Our Fight With Toxic Mold Illness and Lyme Disease

2010

2010-01-03T20:11:00.005-05:00

The last month and a half have been a blur of ups and downs. Coleman has battled a bad case of the flu and is finally coming out of it. In Lyme patients the flu leaves a lot of fall out and we're dealing with the set backs.

Despite this, we had a great Thanksgiving - all of our extended clinic family rented the clubhouse at the apartments and had dinner together - it was great to be together outside of the clinic and have time to talk more meaningfully to people. It goes to show that we really are family.

My niece Erin spent a month with us helping out between Thanksgiving and Christmas - in short she was a Godsend and made the holiday more special. Our 4' tree is still lit and she was good to bring her craftiness to our little Christmas and had Coleman wrapping presents and making cards. She learned the city well and left us a bit sad on Christmas Eve Eve. Spen spent his whole two week break with us and Jeff came in for Christmas as well.

Coleman had one wish, besides some Lego requests, and that was for a white Christmas. It rained all day on Christmas Eve, but after nightfall, I looked out the window to a blizzard. Both the boys were so excited. Coleman insisted that we roll him out in it. Like many others in treatment, he is always unbearably hot, so he lives for the cold of the snow. It snowed all Christmas day making his wish come true. I'm crazy enough to believe that God grants these small tangible things along the way to remind us He still hangs out in our neighborhood.

The doc has changed his protocol a bit coming at the bugs from a different angle so we're managing that as well. Spen was the last to go home yesterday. Coleman and I took him to the airport for his solo flight home. It's tough for me to say goodbye and Spen sincerely asks me not to cry, so I bite my lip, pinch my side, borrow my girlfriend's trick of digging my nails into the palm of my hand and manage to choke back the tears, until Coleman cries, then all bets are off. As much as this coming together and breaking apart hurts, it is absolutely rewarding for me to watch the bond between these boys deepen. I imagine them being this close when they're older...a girl can hope.

So tomorrow we're back in the saddle with treatments and the holidays are officially over. In many ways I am claiming 2010 as a better year for Coleman and our family. I hope for a great year for you all as well.

Up Periscope

2009-11-13T09:52:00.002-05:00

Just coming up above the surface for an update. The changes in Coleman are steady coming and the biggest is that as of one week and two days ago (who's counting) his hearing sensitivity is completely gone! It's a whole new world for him and us and we've been in bookstores, malls, an IMAX movie and the zoo. His pain has not lessened but his joy for normal hearing far outweighs it for now. He said he would take any physical pain compared to the hearing pain.

He feels like a "normal person" now and talks more positively about things. The doc says the seizure meds are beginning to do their thing and she continues to sharpen her focus on the broad spectrum he's dealing with. We're nearly 3 months in and there are shades of Coleman coming back every day. Simple things like hearing his voice singing in the back seat - memorizing lyrics and melodies again - his laughter at things that he thought not funny for the past year and his desire to be a part of the world again.

We're on a good stretch right now - understanding more every day why this process is long and tedious but so thankful for the battles won each week and for a doc and a team that understand this illness inside and out - and for the fact that she has taken others down this road before us and knows the way. We've said some goodbyes to fellow patients and wished them well as they regain their health and head back to their families. We all continue to bond as a family here and find a reason to laugh every day.

Here's to seeing shades of the son I have missed for a year now.

Do your best

Prepare for the worst

Trust God for the victory - I never forget those words.

60 Days In

2009-10-20T08:24:00.003-04:00

I apologize for not updating more frequently. Our life is a never ending cycle of routine here - we frequently call it Groundhog Day around the clinic and it's far more time consuming than I had imagined.

Today marks 60 days on the meds for Coleman and I welcome every subtle sign of improvement I see. Coleman has made some friends at the clinic and all the parents here have become his parents as well. There is an unspoken support system among us that I don't think any of us could do without.

On good days, we work puzzles out in the main room and play Go Fish. He bought one of the other mothers gluten free cupcakes for her birthday last week and it's special to see that his sweet side has remained unspoiled by all the not-so-sweet things he has been served.

November marks a time when we'll move into some more meds to address his other illnesses.

For now, we're steady on our course and although we can't see the dock yet there are lots of great channel markers. My nautical brother taught me to navigate waterways a little and I always remember what he said to help me know how to find my way home. The red buoys were always on your right side and we remembered it by saying, "Red, Right, Return."

That's exactly what we're doing and saying now.

45 Days In

2009-10-02T09:50:00.002-04:00

I was just sitting here counting the days on meds and tomorrow makes 45. I am thankful for the very subtle signs of progress. We've also had those same 45 days to settle in a bit better and our routine and surroundings are starting to feel comfortably familiar, maybe even like home.

It's best for Coleman that they do. Each week we have found at least one new thing we can do, watch or store he can go in, which lifts his spirits. He's interacting with his co-patients here, remembering their names and even working puzzles with some of them. These are things which mark progress to me.

We see the doc again next week and should have updates on his clearing progress. Right now, it's a quiet morning here at the clinic and one of those good mornings when he is able to fall asleep and take a much needed nap. The room is dim, I'm working away at the card table and every now and then I glance over at him curled up in his chair, hugging his pillow, lost in sleep and I think about what a special, unique, rare young man he is and how I feel small in comparison to him and how grateful I am that we have made it this far!

Our Life

2009-09-18T08:42:00.002-04:00

I think Coleman and I both are getting our sea legs for this new life. We're finding places that work for us, a quiet market for food, a car with tinted windows, a quiet apartment, and a group of friends at the clinic.

It's so helpful for me to have moments with other moms, dads and patients here. It's good to realize we all sweat through this and I am constantly reminded that we have it easier than many of our new friends. Coleman has begun to interact a bit more with folks here.

I met with the doc again this week and overall Coleman's bad news is still good. When I look around at the other patients, I think Coleman is handling his meds well.

It's a whirlwind most of the time with a split day clinic schedule - and there are stacks of forms, test results and bills that stare at me from the coffee table, so my time is far more limited than I imagined. As a result, I am not able to update as often. Having said that, it means we appreciate being remembered more than you might think right now. Coleman is a fighter with a good heart and it will take him far!

A Touch of the Goodbye Blues

2009-09-08T22:00:00.003-04:00

Having Jeff and Spen here was such a great thing for Coleman and me - it even surpassed the fact that Coleman and I got to sleep in FOUR straight mornings....ahhhh like a long drink of cool water.

Spen was still in the birthday mode. I have two favorite visual memories of him I have been replaying since they left. The first is when he burst through the apartment door like he owned the place and said, "Uh, Hello!" I didn't know I had left the door unlocked or that they could make it in the building without a key so it was so unexpected to see his smiling face. The second was looking over at him going down the big death drop on the Mamba roller coaster at Worlds of Fun. He is such a thrill seeker and his face was sheer delight. He was especially good to let me hug and kiss him...even in public. He knows how much I miss him, it's the hardest part of this journey not being with the other half of us. He visited the clinic and Supertarget with Coleman and although he would need more time to adjust to seeing his brother out and about some, he was as gracious as a 10-year-old jet lagged, getting over a cold, little/big brother could be. I'll save the story of his gastric perils at the TRex cafe with Lisa's family for another more appetizing time...funny in retrospect though.

Having Jeff here gave me some freedom to do the things I used to take for granted - like return something, get a haircut, go to the freezer section in the grocery store - you know, big time high maintenance stuff. It also makes me feel more complete. Girls, they don't make them like my Jeff anymore and I see that more than ever now.

More than 15 years ago I worked on car commercials for this dealership in Kansas City. I used to wonder why they came all the way to Va. to make commercials...maybe now I have at least one reason. A big thank you to Rana, David and Greg for rekindling relationships and the biggest thank you to Conklin Cars for helping us get around town. We are all grateful.

It's back to the early AM call time tomorrow so I'm going to get Coleman off to sleep. I could tell the difference in him this weekend having good rest and a break from the meds. He enjoyed himself and remains solid. He will make a great leader one day. I would follow him anywhere...and I guess I have...sort of.

Those of us who are strong and able in the faith need to step in and lend a hand to those who falter, and not just do what is most convenient for us.

Strength is for service, not status.

Thanks to the strong who have lent a hand to us.

Happy Birthday Spen and Dad!

2009-09-02T21:29:00.003-04:00

Today is a special day for us. Spen turned 10 and my Dad turned 77. I remember being out at my dad's birthday lunch having the kind of contractions that make you look cross-eyed at your mother across the table until she drives you (reluctantly for me) to the hospital.

I have the sweetest Dad (and Mom) on earth, truly - he's the quiet type, unless you know him, and I missed so much being with him this year. It's been months since he's seen Coleman, yet without fail he chokes up slightly at the end of each conversation and says, "Tell Coleman I said hi." I have always admired his patience and wish that apple had fallen a bit closer for me. He just never complains and I admire the way he handles himself so much - his cup is forever half full and he's the most loyal man you'll meet - true and constant in every situation. Even now in everyday situations I hear his words ringing in my ears, "If you want something done right, you gotta do it yourself." Happy Birthday Daddy - I sure do miss you and I'm doing more things myself than I had planned.

And my sweet Spen, I would be torn apart inside about not being with you as you turned 10 if that airplane with angel wings wasn't bringing your sweet self and you Dad here tomorrow!

Coleman and I have planned things to celebrate Spen's birthday. We'll hit the zoo, a Supertarget, Gamestop and of course order in. Coleman wants Spen to come to the clinic and see what goes on there. In so many ways Spen is the big brother now and he rises to the occasion nicely. I watched him wait on and be his brother's only friend for so many months. I know that Spen has strong character traits and one of them is compassion. He's a wild one, make no mistake, but he loves deeply.

We are rolling along here. Coleman and I feel like zombies a lot of the time from the early AM roll call. He is settling in to taking a nap during his AM treatment and it helps. He and I have a good time planning our simple days and nights together. They don't come much sweeter. The doc says that these kids with good hearts, just tend to get well.

To date, the thing that makes me feel the best is that so far we know that everything Coleman has is treatable and I'm so glad we're treating him here.

The Weekend

2009-08-29T15:17:00.002-04:00

I was talking to some other people in the clinic today and we were talking about how our schedule is the same 7 days a week and how you can't really tell if it's a weekend. We noted there were less cars on the road at 6AM and the apartment is quiet enough for Coleman to take his ear muffs off today. It's beautiful outside.

The meds are kicking in for Coleman and the drips make him tired. He has slept a good long nap the last two mornings during the AM "line" as he calls it. After his line was done, I could hear everyone in the main rooms packing up, but I decided to let Coleman sleep because he was so tired. I just kept working for a while and then went in the hall only to find the whole side of the building dark with us locked in. We snuck through the back office and found our way out. Coleman was glad he got to take a nap. He likes coming straight home and finding new games on the Xbox live. We watched a movie today, with no sound and it didn't have closed captioning. Odd, you really don't need either of them to get the plot and he's making me a decent lip reader.

We're getting ready to head back to the clinic and my friend Lisa called yesterday to say some future new friends of ours wanted to go together and get Coleman a comfortable chair to have at the clinic - lots of people bring one in since they are in them several hours a day. We're headed back in an hour and he's excited to have a new chair. Thanks to Teresa and friends for giving Coleman a soft place to land each and every day!

Each day I get one more task checked off the list and I'm learning that One-A-Day is enough. I' m looking forward to next week and some more results.

Enjoy your One a Day whatever it is.

P.S. The second brain scan was the charm - Lisa doesn't like driving in the city so I could handle that and I don't like hospitals but she's a nurse, so she could handle that. Together we got it done!

Getting Into the Groove

2009-08-26T09:30:00.003-04:00

It's Wednesday and we're getting into the groove. This military wake up call of 5:30 7 days a week is tough on Coleman...and on the one who gets up before he does in the dark. We are starting to look like the other clinic regulars, unshowered with ball caps pulled low.

Some days are harder than others for Coleman but for the most part he's probably one of the best patients I have known. He tries not to complain and takes his meds as scheduled. Tests are making their way back in and I see the doc next week for an update.

Otherwise, apartment life is good and quiet and we're finding our way around this great city.

A New Week

2009-08-24T08:00:00.002-04:00

We're in the clinic doing the AM drip now - the weekend was a stressful blur. Even with Jeff here we are just running around madly trying to get us settled in to the apartment and our routine. There have been at least 5 Walmart, Home Depot and our new all time favorite SUPER Target runs. We don't have those in Richmond so this newly single (not in the literal sense of the word) mom was thrilled to find organic vegetables, Starbucks, a pharmacy (well used already) and motorized carts that Coleman drives at full power. Yesterday they were kind enough to cut off all the TVs manually so that he could look at the games and videos. As exhausted as he is, he lives for that.

Jeff leaves in a couple hours and we are both so numb about that. It's as hard for him as it is for us, but we do have another son who would like to see his dad...oh yeah, and I forgot Jeff works for a living. He took a week of "vacation" to be here, we were all laughing about having some "vacation."

In trying to find the good in the bad I have repeatedly said that the weather here is so amazing. I guess we Virginians are used to living in so much humidity that we just deal with it. Each time I step outside it feels like those few short weeks we have in the spring and fall where the sky is so blue and the sun isn't beating down. As we ride along the river going to and from the clinic I noticed all the joggers and walkers and it struck me as funny that they were all smiling - it just feels so good outside! Another fact, there are beautiful fountains everywhere in this city. They are second only to Rome for number of fountains. We have to avoid them because of the sound, but one day I hope we can sit together next to one and enjoy it to the fullest.

Drink up!

A PICCture is worth a 1000 words

2009-08-21T18:03:00.000-04:00

Today he got the first dressing change...makes me a bit queasy. He was directing the nurse. Didn't make it into the apt yet. We're headed there when the drip is done!
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AM IV Drip Done

2009-08-21T13:52:00.001-04:00

We got through the IV drip this AM. The worst part was getting Coleman up and out at 6am. He fought us on that. We made it in time, hooked up (photos later) and got underway.

Within a few minutes the girl in the private room next to us arrived in her wheelchair and sunglasses. She has a private room because of her sensitive hearing and light issues.
I felt so unnerved by Coleman's yelling when the inevitable mowing started next door for over an hour. He was in a bad way with his eyes jumping a lot. It amazes me now to know those are seizures.

They have decided to move us to the center room this afternoon. If it works, that will become our home. We can bring in a more comfortable chair-most people do- and other things. I might try to bring the XBox in daily and get a few things for the wall. I have seen another boy in the main IV room and secretly hope he could sit in and play games with C one day.

We're in the car basically killing time while we wait for the furniture to get in the apt. Car rides are tough because of the noise so he's a bit agitated and not talking. When ever he is anxious about something, like this AM in the drip room, he tends to loose his speech for a while.

Hopefully we'll get out of this overloaded car soon...
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Stares

2009-08-20T18:57:00.000-04:00

I grew up with and still enjoy to the fullest my cousin Larry. He's basically a down syndrome celebrity around home. Of course I remember people staring at him when we were in public or at Moore's Lake swimming and although my aunt, uncle and cousins handled and still handle it with grace I always studied my aunt's reactions in those public staring, pointing and whispering moments.

Sometimes she would give a short sentence of explanation but most of the time she just let it roll by and treated Larry like he was absolutely no different.

Now that I'm the mom of the son getting the stares, I know what she must have felt inside all those years. It is a certain sense of holding your head down to avoid eye contact mixed with a fierce amount of mother bear silently daring anyone to even think of making him feel strange.

My short answer when I get the stare and the occasional question is "He has Lyme disease.". But typically I just look past it and concentrate on how happy he is to be out.

Sure we feel strange walking into Game Stop and asking if they'll cut off the music and turn off the ringers, but we do it because it's our job.

I find most people are genuinely compassionate and as long as they want to help make Coleman feel somewhat normal...a stare is on the house.
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PICC in

2009-08-20T13:40:00.001-04:00

We just left St. Joseph's Medical Center and our first positive hospital experience ever. They let me come in the surgical room while he got the line in. He did a great job. Ironically, the ultra sound of his abdominal area was much more painful. We still can't touch that part of his body.
I'm anxious to hear Dr. R's interpretation of it.
We're headed to the clinic now for our first IV treatment...my guess is the first of very many. We also get loads of instructions today.
Coleman says he wants to go back to Game Stop today. He looks so beat but is so happy to be in this "new place that doesn't hate him."
Supposed to move into our apartment tomorrow.
I don't know what I would do without my gray haired prince of a husband. I would simply not be able to do all this start up stuff without him.
I will just miss him so much not to mention his pack horse carrying capabilities and sense of humor!
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Wednesday Night

2009-08-20T00:35:00.003-04:00

I just had to look at my calendar to see what day of the week it is...way too immersed now. The three of us met with Dr. R for over an hour this evening. Both Jeff and I agreed that this woman is so experienced that we would never dare stray from her formulas. Honestly, I had visions of myself coming here being far more researched than most of her patients, you know maybe slightly disagreeing and suggesting other things that might even impress her...fat chance. I just sit quietly and write as fast as I can.

She has about 1500 patients - 90 % of whom are outpatient. It's the 30-40 of us who relocate and stay for extended periods who are the most "serious and severe," in her words. It was enlightening to watch her watch Coleman. There was a thunderstorm outside (lots of them here) so he was holding his ear muffs and screaming with every roll of thunder (like he's doing as we speak tonight). She told us to look at his eyes and that he was actually having seizures when he does this. Bartonella is the culprit that causes the mental disturbances. She noted his talking in first person and how that represents a disconnect from himself both physically and mentally.

I will go out on a limb and say that she is expecting Rocky Mountain Spotted Fever but please note - this has NOT been diagnosed - just her gut today - waiting on labs to confirm. She explained that RMSF and Bartonella are the most deadly and to have a combination is lethal - not to mention the mold and PANDAS. Beta strep is a big part of her equation. She gave a great explanation of biofilms and how they form around the red blood cells and basically trap everything in. They cause blood coagulation issues and basically nothing can move in or out. That's why some people who have had literal years of treatment with antibiotics for Lyme are still sick. The biofilms were never broken down, so the meds could not get in and do their job.

There are so many things she will be treating him with. We start with antihistamines, drinks for dehydration, probiotics, minerals, heavy C - these are all things they mix and he'll take them in his PICC line each morning before the AM 2 hour drug drip. We will start with the famous doxycycline and see how he detoxes. 7:00 AM each and every morning and 4:00 PM each evening - about 6 hours at the clinic each day. Because of his hyper sensitive hearing and anxiety issues, she has arranged a private room for him each day for his IVs. She has two other girls like this who sit in a private room. Hopefully Coleman can eventually find some friends at the clinic.

After Jeff and Coleman left the clinic this evening, I stayed for another hour to get so much info that I don't even know how to condense it tonight. While that was happening, Coleman hit another milestone. He and Jeff went to Gamestop. This is the first store he has been in since December, I think. Picture this guy holding his stuffed animals, wearing gun muffs walking bare foot in this store. Sure, there are lots of stares, but generally nice people. Jeff asked the man to cut off the music and Coleman stood and picked out a game. He couldn't wait to tell me and it made me so happy. We then went to a 7-11 and he went in for a slurpee - lots of yelling from the noise but Jeff and I just keep moving like we don't hear it...we probably don't.

I am convinced we will find Coleman while we're here - I am becoming convinced it will take some extra time and patience. Dr. R has such a tried and true system but she says we'll be testing and retesting and moving slowly so as not to have a crisis in healing.

There is so much more I want to say, but am spent. Tomorrow we head to another hospital for the insertion of the PICC line and an abdominal scan - hopefully this scan will be possible since it's much less involved than the brain scan (which we'll be doing next week and he'll be under full sedation). From the hospital tomorrow, we'll go to the clinic for his first drip. Off to the races.

Tonight when I left, it felt late and I said to the doctor, "Do you know what makes me happier than anything?"

"What?" she asked.

"That I'm no longer in charge." She smiled at me with full eye contact.

"Now you've got some reinforcements."

We walked out of the office, I thought she was turning her lights off for the night and she turned them back up (had to be down for Coleman's eyes). I asked if she was going home. She turned around and said she had three more patients to see. It was 8:45 PM. She said there were lots more sick people to make well.

Such a load has been lifted today.

Wednesday

2009-08-19T15:05:00.001-04:00

This doc is like a Lyme bloodhound..that's the best way I can put it.
We have been so busy that I can barely keep up. We are driving (Jeff that is...not texting and driving...) To UK hospital for Coleman's 45 minute brain PET scan.
He is again sedated and barely awake. He has to sit still for 45 minutes and I think it's a bit noisy. Prepare for the worst hope for the best...
Found a place to live about 30 minutes ago. Trying to coordinate furniture rental by friday for move in.
Back to Dr. R's at 6 pm today. No rest for the weary, but very happy to be here!
Back soon
Ok back sooner than I thought. The brain scan was a bust, he'll have to have full sedation to even get through the noise of the scan. So we basically just wasted efforts and further fueled his fear of hospitals.
I'm sure the doc will have insight but it makes me think we'll have to postpone the abdominal scan as well...
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At long last

2009-08-18T12:50:00.001-04:00

At the clinic now for 3 hours and at long last I can say we're in the right place. So much so that I keep getting emotional everytime she asks me something I have tried so hard to make other doctors understand.

Emotional in the waiting room when we walked Coleman through and saw other people hunched over shuffling in pain, wearing sunglasses and whispering.

31 more vials of blood drawn today. Coleman is trying to cooperate but he feels so sick and at last there are people who understand, expect and work with it.

I am exhausted, overwhelmed and confidently blessed to be here...more later
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We made it

2009-08-17T15:47:00.002-04:00

The flight was wonderfully smooth. Coleman slept for two hours but was also able to look out of the window and see some of the sights. Of course he was the equivalent of a major bar fly so everything was a bit "smokey" in his words. The car was waiting for us right at the plane and we're in the apartment now. He actually enjoyed seeing the sights from the car. It's been so long since he's been able to do that. He does feel that everyone here likes him which is a bonus. He wanted to make sure that our great pilots Adam and John were friends...and they are!

Coleman is hung over, hungry and grumpy.
Getting settled in here will be a big obstacle for him. It's not his home and he's on sound patrol looking for any offending new noise.
Jeff is gone in search of beans and rice...
Working our way through this...grateful that we made it here.
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Twas the Night Before..

2009-08-17T00:01:00.002-04:00

We're all packed. I've kept Coleman up as long as I can stand - he's exhausted and I'll wake him at 6:00 - feed him - wait an hour and give him the meds for sleeping.

I talked to the pilot today and we're on schedule for 10AM EST. That will put us in KC at 1:00 their time. The first step is to get there, just get there, get to the apartment. I'm sure there will be bumps along the way...not to mention Jeff's body does not enjoy flying.

Thanks Steve for coming by today to pray with us - it was good to see your face and hear the English accent I miss on a weekly basis. Thanks to our neighbors for keeping an eye out for us and to Val for one last sanity walk and one awesome southern meal.

I'm still feeling we're on the right track, just need to get the wind behind us. As always we are so grateful for those of you who stop to remember us during these trying times. We will be remembering you too!

One More Day

2009-08-15T22:51:00.002-04:00

Well, first let me say that the sedation tests have been a bust, so glad we're doing some trial runs. Coleman has always been one of those "opposite" kids - you know the kind you give Benadryl to and then you're up till 3 AM talking with him.

On Thursday, Spen and I gave Coleman a teaspoon of the sedation medicine and told him goodnight - soon he was singing about cabbages and rhyming everything. Can I confess quietly that it was good to hear him laugh? So in about an hour he was really groggy, but that was it - we added the anxiety med and a bit more groggy, but soon he was eating pizza...We added another small dose and he finally slept for ONE, count it, ONE hour.

Today we tried plan B - more of a sleeping med. We were supposed to take it on an empty stomach, but just couldn't make that work in our schedule at all, especially at the rate he is growing and eating. So again, I had a quite buzzed young man who walked around a bit in a sleepy sort of awake but not awake state. He did sleep some, but not enough to make the flight or check out from the noise.

Jeff and I were talking through our approach for Monday and I think we have a plan in mind. After that, it's up to God and the angels that sit on the wings of that King Air that will so graciously fly us to Kansas City.

I don't want to experiment any more. Coleman needs a good day tomorrow. Physically he has been doing better and I do think the therapy we're doing has made a marked difference. There is clearly such an emotional component to Coleman's cognitive impairment and we're trying to help him work through that.

I was just writing a letter to my cousin encouraging her to try natural remedies for her cancer especially after so much chemotherapy. This said from a woman who has applauded homeopathy as her son's lifesaver. Never mind that she's getting on a plane to take her son to a doc who will drip IV antibiotics in him twice daily...never say never I guess. I do feel that drugs are a necessity for Coleman's type of bacteria and co infections but I don't feel like they will actually cure him. I think that comes from what we do after the drugs do some heavy lifting, but hey, I've been wrong before.

Believe it or not there are two suitcases with clothes in them tonight. It's odd packing for such a long time and for a weather change all the while cramming it into one suitcase. I realized today that there are only two pieces of clothing in Coleman's wardrobe that still fit him. I am certain he's added three inches during this illness and he weighs in at 125 lbs right now. He hasn't worn anything but shorts and t-shirts for so long, I had very little I could pack. Nothing fits him now, not shoes, not button up shirts, not underwear. I guess it will be easy enough to pick up stuff as we need it in KC.

Spencer and I swam a little bit today and there is one vision as a mom that has been my favorite through the years and that is being at the bottom of a crystal clear pool and looking up to see Spen's face with goggles, puffed out cheeks and his hair floating. He always smiles in the water because it's his favorite place. Today I was looking up at him and I could see the fractured tree line and the blue sky behind his face and if I could have stopped that moment and taken it in for an hour, I would have. Well, I would have been dead by that time, but what a way to go. Oh, to squeeze that youngin' into my overloaded suitcase. This part hurts.

As torn and melancholy as I feel about this move, I am certain it is right and I'm ready to go. Admittedly, any room besides this den would help lift my spirits, but this den has been where we have spent the better part of a year and I hope to come back to it with a different young man.

Thank you all for the posts, the emails, the texts, the calls - they help so much. To my neighbors who raffled for us, what a touching thing to do - the next time I'm walking this neighborhood, I hope to have Coleman by my side. Your generosity will help so much. To the Pullers - thanks so much again and Lydia we'll pray for you as well. I wish I had known to be more helpful to you during this time. Hopefully you'll be running laps around your house when we get back. To Robin - your words were uplifting and so is your friendship, thanks for remembering us. To my folks - does your generosity every stop? Thankfully you're cooking doesn't - what an awesome send off meal tonight. I am so thankful for all the errands and understanding. I plan to bring Coleman back to all his grandparents as soon as I can.

I'll update tomorrow - then we'll be headed out...just felt my stomach turn when I typed that. I'm certain it's nerves...or maybe gas.

Testing

2009-08-12T21:13:00.001-04:00

Just testing my cell phone link to the blog tonight. Today we decided to switch from a porta cath to a PICC line. Last night I felt unsettled about the porta cath...just uneasy. Today before noon the hospital called to say they could not properly sedate a child for porta cath insertion but they could do a PICC line. That was all the proof I needed that a porta cathing we would not go. I'm sure we'll soon know why.
We're going to test the sedation tomorrow so I'm praying we are on the right track there. Coleman told me to give him a sleepy pill and make a lot of noise! I wish I didn't have to test it but that would be a foolish move when considering a 4 hour flight.
Spen and I went out for some special time this evening. I am not ready to say just how much this effects him and you'll seldom hear it from his lips. I can't imagine this much time away from him and Jeff. And in the words of Forrest Gump, that's all I have to say about that...

Sent from my Verizon Wireless BlackBerry

Coming Together

2009-08-11T13:57:00.002-04:00

I'm still running around the house sometimes perfectly on task and sometimes just staring at the empty suitcases trying to figure out how "little" to pack. The last two days have brought many answers to a list of questions.

Our flight is now confirmed for Monday the 17th at 10:00 AM out of Chesterfield. Thanks to my brother's friend, whom I may never meet, and Jay's diligent work, we have a private plane that will get Coleman, Jeff and me to Kansas City. This is such a key factor in getting Coleman well. This clinic is far away and the biggest part of the early battle is just getting him there.

I just got off the phone with our doc, deciding on the safest but most beneficial sedative for Coleman to take to get him asleep for the flight. Otherwise, I think the noise will do him in. We are going to do at least two trial runs this week to see just how deeply he will sleep.

I am constantly on the phone with the insurance company trying to do whatever precertification is possible. Inevitably, I will be writing letters and making calls for a good couple of years...of that, I am certain.

Our apartment arrangements are settled - thanks to the R family and Frank! At least 15 times a day, I get this feeling in the pit of my stomach, it's a bit like fear and anticipation mixed...you know that feeling when the roller coaster is clicking up the big hill and your senses heighten one by one. There is a dash of, "I should not have gotten on this ride," with a teaspoon of "just get down the hill already." Then I get off the ride and give it back to God - there are just so many signs that this is the right direction for us. I don't think it will be easy. Just the twice daily clinic schedule will wear on Coleman, the new faces, the public situations, the noise of the neighborhood, the noise of the car, the surgical insertion of the porta cath - all work, but hopefully work that will have rewards.

We have a 3 hour appointment with Dr. R the day after we arrive. You can imagine the questions I have for her and probably she for me. I have filled out 10 pages of info for the clinic and hope to pick up films and x-rays to take with me - well armed.

Coleman is doing as well as I could expect and perhaps even better. He has been undergoing some therapy for the last 6 or so days that is making a difference. We have hopes that it will make this travel and healing easier. Because it is designed for healing, there is a fair amount of die-off or occasional Herx effect. This is a true sign that toxins are leaving his body. Maybe this is one of the reasons we have had this time to wait before we leave...

There seems to be so much more to say, but for now, I need to hop back on the phone and continue to circle the suitcases like a vulture. Maybe this time I'll drop something in them.

An inadequate but heartfelt word of thanks to the wonderful web of people holding us up in prayer and support. Thanks to grammy Suz for donating your flyer miles to the boys so Spen can come out west for his birthday, to my Scotland family Pat and Johnny for the gift on the doorstep (thanks to Kathy the courier too) - I'll wrap Coleman in it until he remembers his time in Scotland, to our neighbors the Pullers for your unexpected generosity, my dear Gumbie for the loot, to Val for being Spen's neighborhood Mom, to Marna and Jody for carrying on with our business efforts without me...and in spite of me, to Lisa in KC, who would have known when we were sitting in high school together all those years ago, that you would come to my rescue in KC one day, to my thoughtful friends pulling strings everywhere that I can not see but will feel the effects of when the time is right, for your emails and texts that hit just when I can use them. And to anyone else I have forgotten, you are appreciated and I will say thanks when you come to mind...often.

A note to all the caregivers - those who spend their lives, actually those who dedicate their lives to caring full time for someone they love. I have learned how draining, how trying, how refining it can be and I send you this reading from the good book. I hope it lifts your spirits like it lifted mine:

..If you help, just help, don't take over
if you teach, stick to your teaching
if you give encouraging guidance, be careful that you don't get bossy,
if you're put in charge, don't manipulate
if you're called to give aid to people in distress, keep your eyes open and be quick to respond
if you work with the disadvantaged, don't let yourself get irritated with them or depressed by them.
KEEP A SMILE ON YOUR FACE.

I read that one morning when forcing a smile required a crane and a surgical procedure. I forced many that day, I looked right in Coleman's eyes and smiled - I felt my love for him just pour out of me. We locked eyes for a while and he smiled just a bit and then looked slightly confused and asked, "why are you making that face?"...as Spen would say....he schooled me.

:) :) :) :) :) :) :) :) :) :) :) :)

Less Than Two Weeks

2009-08-06T12:00:00.003-04:00

First, Ms. Joan - can you call me? I don't have your number in my cell and I've tried every way I know of to find you - so if you're reading, will you give me a ring? We miss you around here!

It's Thursday and I keep finding myself in that somewhat stalled position. You know the one you land in when you have so many things to do on your list that you literally find yourself stalled. Maybe posting to the blog will stop the trail of circles I seem to be walking in today.

I would say our preparation to leave is going as well as can be expected. The most unknown factor is insurance. I would imagine most all of us have ended up in an insurance quandary at some point or another. This morning I just said out loud, this one is not my nut to crack. There are so many details that have fallen into place that demonstrate to me that KC is the right move and if I truly believe that, I have to believe God will handle the insurance as well. Going to KC is "out of network" and although we have a certain amount of coverage on that front, it will ultimately come down to writing letters, arbitration, etc. I've done it before so I'll be ready to do it again. I remember there are some in this situation with absolutely no health insurance. I'll probably meet another mother whose husband lost his job during their child's illness and my faith will seem small.

Coleman is holding his own. He met a new practitioner yesterday - a man - he bonded with him immediately and their session went well. We are working on the emotional quotient and trying something that I've not heard of before. I'll let you know if it seems to help. His hearing remains his worst enemy day and night and I hopefully wait for the day he can enjoy the beautiful noise of the world again. He talks every day about his new home and how everyone will like him there. It makes me feel great to hear this, although I'm not sure if he understands the extent of what he'll have to do once we arrive.

Not too much news to post today, so I'll be back when we get some more answers. The one answer I read this morning:

If you seek God, your God, you'll be able to find him if you're serious, looking for him with your whole heart and soul.
When troubles come and all these awful things happen to you, in future days you will come back to God, your God and listen obediently to what he says.
God, your God is above all a compassionate God. In the end he will not abandon you, he won't bring you to ruin.

Still seeking.

Soaking Feet

2009-08-02T21:10:00.002-04:00

I'm sitting on the couch across from Coleman with my feet soaking. We've done this several times for him to help his peeling skin and it looked too inviting for me to pass up tonight. The great thing about having your feet in to soak is it's virtually impossible to be asked to get up and get anything...ahhh....think I'll prune my feet.

We're basically two weeks from leaving and although part of me would like to be leaving tomorrow to expedite his healing, the other part of me understands what we need to accomplish during this time. One of the important things to do is to begin trying to chelate and move out the metals in his body. With metals in the way, it's really tough to move anything else out of the way. We do a daily 5 step process and we've done it for three days now. As with each other time we have tried to move metals, it takes its toll on Coleman. The target becomes his speech and today it is challenging. We will take a few days off from this process and give him a chance to clear. We'll try again before we go. We have confirmed that he has blood coagulation issues and we are doing further testing to find out if its genetic or due to bacteria. Sludgy blood makes it tough to chase the bad guys out and when the drugs are administered directly into the bloodstream, they'll be a lot more dead sludge in that blood to move out. I think these two weeks are made for that.

Today was an odd milestone. For the first time in nearly six months Coleman left the house in our car. We have offered so many times in so many ways to just drive to the end of the street, anything. It has always been met with absolute no. With his hearing so sensitive, the neighbors' mowers drive him literally to the edge. Today he was in anguish and I said we could get in the car and we did. It would be an understatement to say he was scared, but he did it. I never thought about the noises even in the car. The chimes when it starts, the noise of the AC fan, the sound of just putting the car in gear - all overkill to him. We parked in a couple cul-de-sacs in the neighborhood and although he wasn't talking, I could tell he was taking in the scenery. I was thinking what it must be like to have the limited surroundings he has had for so many months. I wondered most of the day if it was a good thing or not and then when another mower started in the evening he wanted to get back in the car. For better or worse, he went in a car twice today and it takes a bit of a load off because he'll need to go in a car every day in KC.

I have a list that is two pages long for prep - he and I are essentially moving there - so odd. I have been communicating with the landlord and couple we are sub renting from and they have gone out of their way to help us. Today we got some pictures of the inside of the apartment so Coleman can warm up to it and know what he'll be waking up to. Jeff made the comment that we have angels everywhere it seems.

Spen is rolling through summer. He won't make the initial trip with us because he has testing to prep to enter a new school system and more importantly a few more play dates to fill. I took he and a friend to Busch Gardens Friday evening and we were crazy enough to go in during the rain. I didn't mind walking around with an umbrella - watching him so happy was worth the drenching, and the lines were short! Hopefully he'll come to visit us for his birthday just before school starts. Coleman and I both are bummed about our family being split in half, it will be so hard for him because he lives for the moment when Jeff and Spen come through the door everyday. I'm sure one day when we look back on our time apart, it will seem like just a drop in the bucket to a life well lived.

Thank you JR for hooking us up with a roof over our heads and to Val and Mern for taking sanity walks with me even if you do nothing but nod your head because I just can't stop talking.

These pruned feet have to spring back into duty. I'll stay in touch with new info this week. Grateful to you all!

Medical Jargon

2009-07-28T22:13:00.003-04:00

I had a productive conversation with our nurse practitioner yesterday. I am always so grateful that the people that are on our team are so concise and articulate and willing to translate medical jargon to language I can truly understand.

Our first practitioner, who by the way is still in the trenches with us, is always good about saying "research word" in the middle of a sentence. That's my cue to mark that word or topic for a few hours of research. It has helped me have a much better grip on what we're dealing with.

The blood tests that deal with coagulation came back and Coleman does have the blood coagulation issues she suspected. In familiar terms, he has "sludgy blood," which makes detox, clearing bacteria and other bugs more difficult. Once the coagulation issues are documented, the next step is to find out whether they are genetic or due to Lyme. It's important to know because it changes the method of treatment. She has ordered the follow up genetic test using the extra serum waiting in Las Vegas.

In the meantime, these biofilms that trap things in the blood cells need to be broken down for less sludge. The drug approach would be to use a blood thinner or something similar, the natural approach would be to use a series of products that begin to break down those walls. Tomorrow morning we start with the natural, which is a 4 step approach each morning - each step is 20 minutes apart and involves stomach prep, breaking down the walls and then clearing out the sludge.

Today, she received his Vitamin D ratios from the blood work. A normal range is 33-100, Coleman's is 13.5. This tells her two things - the first is that his body is fighting infection and it's using every single bit of Vitamin D store it has. The second is that to her, this puts the icing on the evidence of Lyme.

We have exactly three weeks to do whatever final prep we can to his body for the heavy antibiotics. There are several things we are doing each day and he's up and around much more with his walking stick which is always helpful to every part of his body. I have been amazed what a toll lying in bed takes on a body, and just how fast it does its dirty work.

Things are beginning to fall in place. The best news for me today is we have found a place to stay. My old friend and coworker, JR married a chap from Kansas City and I can't tell you how many years KC was a part of our conversations. Her in-laws keep an apartment there that will be available to us till Christmas. That takes a load off of my mind. My high school friend, happens to live right outside the city and we've been emailing as well. I can't say how much these practical items ease the mother's conscience.

Our first appointment with Dr. R is on the 18th in her clinic, the second is the 19th, on the 20th we go into a local hospital for out-patient insertion of a porta-cath and if all goes well, start the meds that afternoon. We'll go each day for two treatments. We follow up with the doc on the first Saturday evening. Yes, she is clearly working us into her already full schedule and I'm obliged. Our nurse says that there is no one better qualified for the complicated neurologic piece of Lyme than she.

Our transportation out there is still a bit in flux. There is no way Coleman could fly public transportation so today's insurance coverage conversation was about transportation and just how much we could sedate Coleman for travel.

My kitchen table looks like a paper factory exploded on it and its spilling over to the dining room table now. There are so many things to coordinate and I'm thrilled to do every one of them. I truly feel like this is the right choice for Coleman's health.

Ironically, he is very excited about his "new home" and he was telling the social worker that to him it would be like starting over and maybe he wouldn't be afraid of so many things there...maybe "they would like him there". I can't say enough how much this is the one over riding prayer request that I could ask for. Coleman needs to feel confident enough to ride in a car (hopefully a quiet one) and walk into a clinic every day. He also has to face his biggest fear and that's to go back to a hospital. Even as an outpatient, this will cause him the most trouble....then I read:

We know how troubles can develop passionate patience in us, and how that patience in turn forges the tempered steel of virtue, keeping us alert for whatever God will do next. In alert expectancy such as this, we're never left feeling shortchanged.

Here's to a pocket full of change in us all!

Moving Quickly

2009-07-24T17:10:00.004-04:00

So much has been happening over the last few days that I hesitate to post because much of this feels in flux. There are some things that are beginning to be certain. The first is that Coleman's test results from Fry Labs in Arizona show organisms most likely Proteobactor and/or protozoa. Not all Lyme patients have them, but those who do often have neurologic symptoms. Although our Lyme panel from Germany has unofficially come back as "indeterminate" neither positive nor negative, it is rare that one would have the co-infections found in Arizona and not have Lyme.

The nurse practitioner puts it this way: The coccobacilli are co-infections with Lyme. The current Lyme infection is not the biggest player right now, but these infections sometimes competitively inhibit one another and when you treat the coccobacilli, other less active infections ie Lyme might emerge.

This is also one of the clearest descriptions I have found about co-infections:
There are other co-infections that complicate the diagnosis and signs and symptoms of Lyme Disease. These infections can also occur by themselves or in various combinations. For example, another tick-borne infection is caused by the intracellular protozoan Babesia, first described in domestic animals in Romania [8]. There are over 100 species of the genus Babesia, but most infections in humans in the United States are caused by Babesia microti and in Europe by Babesia divergens and B. bovis. This type of infection can occur as a co-infection with Borrelia (about 20% of cases of Lyme Disease have Borrelia plus Babesia infections).

And an interesting paragraph on Lyme itself:
Borrelia organisms are among the most malevolent bacteria known to humankind. They can evade antibiotic therapy; down-regulate the immune system; withstand very cold temperatures and “starvation”; change their shape to become more resistant or invisible to the immune system; invade cells and “hide” inside them, and can even “cloak” themselves by pulling their host’s tissue around them! (Sounds like a sci-fi story, but it’s all too true).

The bottom line is that once they invade the body, these bugs are hard to get rid of, sometimes even when they’re caught right away. So it stands to reason that for many patients longer antibiotic therapy is necessary and very often essential. And if the infection has become chronic, a multi-faceted approach including long term antibiotic therapy; gut clearance; immune modulation; homeopathics; chelation therapy and detoxification, is the only way these people will recover.

We still have a few results to see next week, they are equally as important.

Even with what we know now, the nurse practitioner feels that Coleman needs aggressive and prolonged IV treatment. Outside of injecting the antibiotics into his bloodstream, there are other treatments involved. These include supplements, oral antibiotics, potential oxygen therapy, neuropsychiatric testing and others. Our nurse works with several Lyme literate MDs in DC, Maryland and NY, but in her words, "if it were her child, she would be with none other but Dr. R (blogging is supposed to refrain from names) in Kansas City, MO". This clinic is pediatric and headed by an dedicated physician who treats Lyme, Chronic Fatigue and autoimmune disorders. She (gender slip) is also published in the area of PANDAS which Coleman suffered at the height of his illness. To boot, she is highly versed in the field of neurotoxins and mold and was quick to step in early and have us stop the Bicillin shots we started last week. She noted that those shots were mold based and should not be used on Coleman due to his mold illness.

How have I seen God's hand? At the top of the list was the fact that Dr. R was booked through the end of October, but when she heard about Coleman's condition, she cleared him in for August 18. Normally, she requires an initial two day visit with a return home, month wait and then a return for treatment. Because our nurse has done most of the testing the doc does, we will have our initial two day visit and start treatment on the fourth day. The third day would involve an in-patient hospitalization for an insertion of a PICC line for the meds. All the medicine is administered in the clinic and typically consists of two daily visits morning and afternoon. Our stay there could range from 1-3 months so I'm preparing on all fronts. Certainly there are many questions still and today alone I was on the phone with the docs office, the insurance company, the nurse, the social worker, etc.

On Monday I have a 2 hour call with the nurse and will get more test results and lots of answers.

We are beginning to arrange transportation and housing. The short wait will be valuable for that and for our work on Coleman's mental state. We have begun using meds to help with his anxiety as a first line approach for enabling him to leave the house and travel. Physically, I see a bit of improvement each day, which will help a great deal.

Although things are moving quickly, I have an over riding sense of peace and a confidence that we are on the right track for his treatment.

I will update early in the week, but for now wanted to answer some of the questions in my in box! Thanks for asking and thanks for caring.

P.S.

2009-07-21T17:49:00.002-04:00

I forgot to add that Coleman has been up and around again - as of yesterday he is walking with his walking stick and not the walker. He walked out to the deck today and is able to put his feet nearly flat on the floor. Just wanted to add every bit of good news when we have it!

Test Results

2009-07-21T17:17:00.002-04:00

Thanks to everyone who has politely prodded me to update. It seems every day is a swirl of information and sometimes a bit much to juggle. We have only received one test result back and its called a CD-57 which measures the natural killer cell for Lyme. 100 is low and the lower the number, theoretically the longer the body has been exposed to Lyme. Coleman's was 66, which in the nurse practitioner's eyes is a strong point to Lyme and also explains why a western blot would be a false negative.

Tomorrow, I am due to have the results of the Lyme panel that was sent to Germany. This test carries a lot of weight and probably the most definitive for us.

We are now discussing ultimate treatment options. The nurse practitioner is convinced that Coleman needs to be treated in a specific careful manner and that the treatment he needs isn't local. We are talking with the facility of her first choice to see if they will work Coleman in earlier due to his condition. There will be a bit of a wait either way and that time of waiting is actually valuable for us. We will continue to use meds here and focus on widening his world. The best way I can describe it is that both mold neurotoxins and Lyme spirochetes attack the brain so directly that there is fallout that you just wouldn't normally expect...until you read well written publications about Lyme and email other suffers and their parents. It gets all too clear then and is a haunting but somewhat comforting reminder that we're not the first to deal with this. We have to get Coleman in physical and mental condition to travel.

He did have a milestone today - after much emotional work, he met a new person today and that was a social worker from the visiting nurse group. She has been in our home a few times but never met Coleman. I felt today was the day and they had a good visit. He just kept looking at her and then he said, "sorry, it's just strange to see a new person." He was ultimately glad and talked to her and then said he had a friend. These moments come at such a great emotional cost but the connection is worth it. With that, his world was just a bit wider.

When you remember us over the next several hold-your-breath kind of days, I would be personally grateful that you would whisper my name along with Coleman's - we are knit together through thick and thin and some days it feels thin. God is our very present help in trouble and I realized this past weekend that it is not his plan to pluck us out of the eye of this nasty storm, but He is navigating us through it. I just never liked storms.

Phewf

2009-07-13T22:14:00.002-04:00

That's a Coxism around these parts. It comes from Spencer who for some reason thinks the expression "Whew" is pronounced "Phewf" of "fewf" (whichever you prefer).

Phewf is all I could say today when I walked out of the last Fed Ex drop. I had just walked out from handing the man behind the counter the blood samples from my precious boy.

Our nurse met us here today and Coleman was a champ for a draw from both arms - not even a wince. It's so wonderful that he can be touched and handled now - it helps on all fronts. I think it was between 13 and 16 vials we drew today and we had packing and shipping instructions across the den floor. We had two LabCorp stops until we made it to the one that would specially prep some of the vials. At first we were told they couldn't get it prepped for tonight's shipment...it must have been the look on our faces. We were told it would be prepped and make it out tonight. As I sit here with Coleman, I am thinking about three different planes headed to Las Vegas, Phoenix and Germany all with a small clinical pack tucked somewhere in the cargo bay carrying the blood that hopefully holds the answers we need.

Back to waiting - waiting and working on detoxing. Coleman is also scheduled to start taking a weekly dose of meds via an intramuscular shot this week. This drug will clear out any residual strep and also begin to work on the bacteria. These shots are frequently used for Lyme patients and I hope he is ready to handle them without a big set back. Even without a clinical diagnosis of Lyme, these shots should help. They may also hurt before they help.

He has been standing some on the walker with enough muscle strength to get the job done but the bottoms of his feet still hurt too much to put weight on the floor.

For now, we have done what we can. We have researched and petitioned for the proper testing and I believe that's what we have done. Now we just have to hope the lab works goes as planned and they have everything they need.

It's time for lights out because somewhere in this hectic day we shot a commercial as well. So grateful we were able to jump through the hoops and that when all was said and done, the day was as good as we had hoped. That's what we're thankful for tonight!

If you make it through a tough day, just say what we do...Phewf!

Catching UP

2009-07-10T22:19:00.003-04:00

Looks like it's been 9 days since I have posted...give her an inch and she'll take a mile. There are nights I walk by my computer and start to post and decide not to. There are reasons not to blog, most of them political, some of them emotional. What I've learned while channeling my way through what seems to be the Great Dismal Swamp is that some days only 30% of your time might be spent truly focusing on the illness and treating your child, while the rest of the time is spent calling docs, insurance managers, and simply dodging bullets.

I have spent the last 9 days walking a tight rope of research, fear and politics. I have come to appreciate docs more. Whether or not I agree with their opinions at the time, I have to appreciate what they must go through in the true interest of good health. With all the paperwork, malpractice and emotional parents (self included), it's a wonder they can actually treat patients. I can see where many parents would give up and I have been at that crossroad.

If I thought toxic mold illness was difficult to navigate, it was just a warm up for the wonderful world of Lyme. I hesitate to say too much about the topic because opinions flare on this one. It's a misunderstood bacteria with a gaggle of co-infections that can take your life. I have had one goal for the last two months and it has been to have Coleman properly tested for Lyme. This does not include a western blot, which tests for antibodies to the bacteria, but actually crushing the cell and finding the spirochetes of Lyme. Having that goal puts you center stage in the politics of Lyme.

If we are able to tie up some loose ends on Monday morning, we will draw blood in home during the afternoon and send a few kits to labs in the western part of the country and to Europe. Each time I talk with the Lyme RN we are working with, I am more convinced that she is on point. Today she spoke with our doc and that really helped tie things together. When it all boils down, this testing is the single most important thing in the course of this illness. With a Lyme or co-infection diagnosis we head in one specific direction of treatment that will be involved. If he tests negative, we will head in a polar opposite direction and quite frankly, it's the one I fear the most.

Fear, I'm working on fearing it less...working on trusting more - as though it were ours - having confidence and staying in the race. On the worst day I can remember in a while recently, the day I thought my world might unravel (and I thought I was out of rope to begin with), I read "don't sit on your hands, stay in the race and stay the course - finish what you started." I knew that day was going to be challenging and when I laid down numb that night, I thought of those words.

Coleman is getting just a bit stronger each day since stopping the antibiotics. We are exercising in bed again and his leg muscles are coming back. He has been blindsided by what has to be the worst cold I have ever seen. It was an import from his brother who is back in full swing and maybe a bit too much. Today Coleman has felt a bit better from it and we're just pushing through it. Even with the cold, I can tell he's a bit more engaged and eating nonstop.

Spen had his first chiropractic adjustment and is taking a good regimen of immune boosters. He and I took a walk tonight - he saw the Tansformers movie today and gave me a blow by blow...male version...which is the story in about 3,000 less words.

I apologize for being off-line. I admit to being consumed by getting the stars to align for this testing and by working a bit here and there. I appreciate all of you for reading and for those of you who comment and drop emails. They help pull me back out of the woodwork and keep my head in the game. Guess that makes you all coaches.

Put me in coach...

Done with the Drugs for Now

2009-07-01T22:04:00.002-04:00

We finished the 21 day antibiotic provocation trial yesterday and in my humble assessment, it did just that...provoked the bugs. I did expect his symptoms to get worse, but maybe not for this long. Within two days of the full dose, he really seemed to feel worse and truly take a step back on all fronts. Today I have been looking for any change and I think his stomach might feel a bit better and he might be a bit more calm, but truly hard to see much difference and too early to expect it.

During this time, I have done more research on Lyme disease, joined state and national blog groups to find other parents with similar stories and to search diligently for docs....Lyme Literate docs. I have to admit that I thought researching my way through toxic mold was tough and seemingly lonely enough, this topic is deeper still and seems to confound equally as many people in the medical profession.

Like many other Lyme and toxic mold suffers, I too, for obvious reasons, believe they tend to travel in pairs. Some people I talk to believe that Lyme is so prevalent in our society that many of us live with it dormant in our bodies until something like a toxic mold exposure blows the lid off of it and brings it to the surface. Given Coleman tick bite history and symptom load, I have to believe it. The thing about these two health issues is that they both share many of the same cognitive, respiratory, joint and gut symptoms, so sometimes isolating them is tough. The most interesting thing to me is how both are systemic and compromise the host's immune system so greatly. I am beginning to think that there are several illnesses with different names whose roots actually are firmly planted in Lyme and mold.

We are charting our next steps. For Coleman, we will ideally wait two weeks which will be the best time to blood test again for Lyme. I hope to be working with an RN who is well equipped to order the full battery of specialized tests for Lyme and its co-infections (which are frequently as important as Lyme). A clinical diagnosis is necessary on so many future fronts. During these two weeks, we will be targeting detox of the neurotoxins and hoping his joint pain will subside enough to get him up and around again. At that point, most all future steps will hinge on the outcome of the tests.

I can say this, finding a Lyme literate doc who will see your child in less than 6-8 months is practically impossible and they don't take insurance, so finding this in-state RN with so much specific experience was a relief and I trust God's way of saying we're still on course. Much is also in the hands of the insurance provider and I am making a specific case on our behalf. What we wouldn't sacrifice for our kids, but it would be great for some of the expense to be covered....or, more than some.

I have been dealing with shoulder/back issues and attempting to ignore them until it became impossible to take care of Coleman properly. Fortunately, I found a great chiropractor who holds the shop open a bit late for me to come after Jeff gets home. Two visits have made a solid difference and I am grateful! Our practitioner and I think it's how my body is detoxing and fortunately both the Zyto and the chiropractor's muscle tests show me clear for Lyme.

Spen is still at it, swimming and skating - and planning to finish all of his 3rd grade work by the end of this week. We are going to move in some supplements next week to get his immune system set for school in the fall! I promise to post his Johnny the Suitcase Head cartoon soon.

So much remains uncharted, but that's what faith is all about, walking where you can't see. My brother and I had a 3 hour evening visit last week while he was in town and he was telling me about taking a big boat into New Jersey's port late at night through what sounded like the eye of a storm. The boat was literally beating the crew and he said his nerves were racked because he realized the fate of the crew was in his hands and there were no lit channel markers, just radar and ears...and guts. It occurred to me that we're the same here, navigating these waters without a chart, while the fate of our crew rests in our hands. Fortunately, I know the chart maker and I've given him the wheel.

I've been reading in Hebrews about faith:
So don't throw it all away now.
You were sure of yourselves then.
It's still a sure thing!
But you need to stick it out, staying with God's plan so you'll be there for the promised completion.

Sometimes I think really think I'm lead to specific pieces of guidance in this book of wisdom. Maybe I always have been and just didn't have the ears to hear or the eyes to see. Funny how the senses heighten at the rope's end.

Catching up on the hugs

2009-06-27T22:33:00.002-04:00

Here's an experiment for all the parents. Try going just a day or maybe two without touching your kids, not even when you hand them something or walk by them - no hugs or kisses, no touching at all. It really is a bizarre thing. That's how it has been with us and Coleman for months.

I have failed to mention that over the last few weeks, my ability and now our ability to touch Coleman has come back. Now I can actually put my arms around him and hug him - no more "scarecrow hugs" as we called them, when we stretched our arms out straight to the side to make sure we didn't touch Coleman when he tried to hug us. - It's just so strange and such an odd habit to have to develop. I am catching up on giving him all the affection I have been storing away for months.

This symptom is common for PANDAS - strep in the blood - one of Coleman's first hurdles. It's also the illness that made him afraid for us to leave him. Ironically, the inability to be touched also lines up with Lyme so take your pick...I do. Spencer is so conditioned not to touch his brother that I've noticed he hasn't gotten his nerve up yet to touch him.

Touch is such a wordless communication - something you feel so strongly with someone you love. It seems like talking to plants and watching them grow. It reminds me of the stories my friends who have adopted tell me about their children being smaller when they got them because they had not been touched. I guess like anything else, we don't know how important it is, especially with our kids, until it's gone.

The last couple of days mark two full weeks on antibiotics and we all agree that there is a very slight improvement in Coleman. In his coloring, in his upper body strength and in his involvement. Today didn't seem quite the same - he seemed more tired. We had a rough night as the storms passed through and the thunder and lightening sent bolts down my spine and I don't even have hyper sensitive hearing. Tonight, the planes are quiet, the frogs are croaking and I don't hear any thunder rolling in the distance...which is why I'm going to cut off this computer and keep my comrade company until he drifts off into hopefully a much more peaceful sleep than last night.

For fun, count how many times you touch your kids today and then touch them a bunch more...just because you can. I truly believe there is healing in touch.

Into the Meds

2009-06-22T22:46:00.003-04:00

My friend called me today to get an update on Coleman - he reminded me that I wasn't posting enough so he had to track me down. That prompted me to jump back in.

I'm sitting next to Coleman in his bed tonight. He's now 10 days into the antibiotic and there is some tough going - welcomed, but tough going. Most all the research I have done talks about latent Lyme and how it can take 1-4 weeks for the meds to begin to show some positive effects and in the mean time, expect the symptoms to get worse. In some ways, it's like jumping back a month or so ago when small tasks were harder for Coleman. He isn't feeling strong and although he stays occupied, he's mostly in bed working through it.

His hearing sensitivity is probably the toughest symptom for him and truly for all of us. It takes some ingenuity to wash dishes, clothes, cook or run water. We have a daily drill where Spen and I blitz through dishes, laundry, etc. while Coleman takes a break outside. The most challenging thing is that we happen to live near a municipal airport and this year in particular we have been noticing that the planes are flying so much lower and suddenly so much louder. Today, I could have sworn that there was an air show going on overhead - it was so hard on Coleman and in turn hard on us to watch.

Spen started a cartooning class this week at the Visual Arts Center and he's all about that. His first character is a man with a suitcase head. He said he eats clothes and can travel anytime he wants...hopefully some art to follow.

I admit to being at one of those low points at the end of last week. The feeling of being closed in on - like good things weren't happening fast enough, like I wasn't feeling well enough myself. I have hit enough of these times now to recognize that its right after these lows that I seem to find some new clarity and confidence and just plain faith to keep the course.

I found some of that new confidence when I read this yesterday:

Now that we know what we have - Jesus this great High Priest with ready access to God - let's not let it slip through our fingers. He's not out of touch with our reality. He's been through weakness and testing, experienced it all. So let's walk right up to Him and get what He is so ready to give. Take the mercy, accept the help.

So I'm back to direct communication with the docs and with our health insurance carrier, they have proven to be a good ear and hopefully a good ally for plotting our next steps. These next two weeks are some of the most important. Thanks for remembering us as you run your errands, sit at your desk, take the kids to baseball and stand in lines...long long lines.

New Meds

2009-06-16T23:05:00.003-04:00

We've worked our way into the antibiotics and Coleman has been taking them for almost a week. He is experiencing some die-off symptoms, which is when so many bacteria or organisms are killed quickly and the body has a bit of a struggle working through the load.

The fact that this is happening clearly tells me we're on the right track. It's a bit of a challenge right now as we talk about getting a bit worse before we get better. Coleman is more tired and staying down most of the time. I miss seeing him in the pool and up and around more but I know this is what we have to do to at least begin down the road of eradicating the microscopic enemies that have shacked up in his bloodstream.

Lately I have felt so separated from family, friends, co-workers, church but I know this is a special time for us that needs concentrated attention and this is where we belong until we can work through it.

Tonight I want to express my appreciation to you for truly not forgetting us. Coleman can use your prayers as his body has to be as strong as ever right now to work with the antibiotics. This is physically challenging for him and there were new side effects before we started the drugs, especially in his hearing - it is highly sensitized and we have been adapting all our daily routines to the silent side. Creativity is in high order. Coleman is being the best sport that he can...better than I would be.

Do your best
Prepare for the worst,
Trust God for the Victory.

Goodnight from the quiet as a mouse house!

Quick Check IN

2009-06-11T23:01:00.002-04:00

Sorry for being off line a bit. I have been truly focused on communicating with the docs and practitioner as I keep a close eye on my boy. We are underway with meds - traditional meds and are working up to a full dose.

It's interesting that my friend Andrea (her post is in the upper right corner of this blog) has posted on Lyme Disease. It is such a hot topic and I believe it's becoming an epidemic our country can no longer ignore. I am hoping to see Under Our Skin, the documentary that is premiering around the country now. The excerpts I have seen hit far too close to home.

Although blood tests are frequently negative one has to consider the symptoms and the history, both of which we have. I'm glad our approach is addressing this and truthfully, we are banking on it.

It is printed in so many places that a neurotoxin exposure can awaken sleeping giants of other kinds. There are several mold patients I have personally communicated with who have experienced the same dual illnesses.

I will be checking in, but for now, staying close to home and close to my comrade in battle!

This morning I prayed for discernment - patience and discernment - I wish the same for all of us in whatever decisions you face today!

Great Expectations

2009-06-05T22:25:00.002-04:00

Happy to be back on line with an update. For all of Coleman's physical progress, there are some cognitive issues that are commanding most of our attention. For more than a couple of months we have been suspicious of bacterial infections that would require traditional meds, but Coleman was not in the shape to handle them. I've been communicating with several doctors, including three today and we are all in good agreement to give these meds a try.

This protocol will need some time and some patience while we work with it and through it and my recurring prayer is that it will work or at least work well enough to let us know we're on the right track. We've made some other adjustments to our meds to make his body as strong and rested as possible.

Most of our days are the usual routine. I worked out of the house two days this week and had my usual feelings of concern while I was away, but enjoyed when Coleman called me three times during the day to check on me. I guess he feels like we should be together too.

It's been a while since we've made some good progress and I'm banking on some good progress soon. The best progress here has been for Spence. He has made some amazing steps. He draws every day, just like he never stopped, he sculpts, he has been going to after school care a few afternoons a week just to play with his friends, he has play dates and my mom just keeps saying "he's back," even doing math. Ironically, he made it back to school for one day and that was today, the very last day of 3rd grade. He enjoyed seeing his classmates and it gave Mom a chance to get a clear picture of what we have to accomplish to have Spen successfully complete the third grade. He was working with my Mom earlier this week and he thought for a minute and told her, "Gram, I've got to get my life back in order." That statement sums up my boy in a nutshell, he has the beginning traits of an alpha male who knows what he needs and likes to have a plan. I like seeing him back in action and I like that he's back to petitioning me non stop for play dates and more clay.

Thank you for remembering us as the weeks pass. I am praying that we're making the decisions that will bring our boy back to the same health his brother is enjoying.

Thankful

2009-05-29T23:02:00.002-04:00

I've been offline a couple of days - I'm working this week and it makes me realize just how much work it takes leading the boys down the path back to good health. We are changing up the protocol on Coleman a bit and that alone requires careful attention to every detail. I know I've said before what a slow process this is, but honestly, I'm reminded of it every day. Sometimes it's two steps forward...

I am looking forward to next week when we'll take yet another step and look for some more positive movement. Coleman is swimming and loving it so much. There are moments in the pool when he seems so much like the Coleman before all this happened. He gets tired more quickly, but so enjoys the water. It's a real work out for him and he falls asleep more easily at night as a result. He has been eating a lot this week, enough that it makes me ask him, "you want what?". He is growing at a rate I can't even believe. Becky, his PT commented this week that she has seen him grow in the short time she has known him.

Spencer has become a flurry again. When he was young I called him the Wildcat or Homewrecker and in the last week, he seems to be re-earning that title. Into to so much, full of energy, drawing every day again, more school subjects, play dates and riding the four-wheeler with his grandfather. He is still detoxing and rashes still, which is actually a good sign, but also a sign that his immune system is still under reconstruction. He continues his daily regimen of meds and is doing so well. Coleman isn't the only one growing around here...

All in all, we are moving in the right direction and so thankful for how far we have come. Coleman and I list something to be thankful for each day and some days it's hard for him and then he'll come up with something as simple as a cheeseburger and then it's the downhill thankful train after that.

Be thankful, even in this.

Memorial Day

2009-05-25T22:58:00.002-04:00

We were having that conversation around dinner today - what the holiday meant, why we celebrate. We remembered the people who protect our country and people we have lost.

I was talking with my mom about how all those years she and her siblings were faithful to take her mother back to the family grave sites every Memorial Day. They always enjoyed their time together, but in the end might comment on how they would really rather do something else besides that on Memorial Day.

I remember that holiday growing up. We would ride in the back of a pick up truck across an overgrown field to the most picturesque small cemetery that was a perfect square with maybe about 50 gravestones. It still has a black wrought iron fence around it and some beautiful trees that have grown so massively over the years. This cemetery is where my grandmother's first husband, the grandfather we did not know is buried. My dad would cut the grass with a push mower and my mom would always change out the flowers to my grandmothers liking and my cousins and I would read all the headstones.

Since Grandma died just recently, this would mark the first year that her family really wouldn't have to make that trip to the cemeteries...but guess where they were. This time was tough for them as they remembered their mother, it all was a bit too fresh. Interesting how old habits get ingrained so deeply, then they become more than habits, they become part of who we are, what we're shaped from and it shows nicely in all of them.

We enjoyed our day here, had a cookout, swam, did the usual list and we topped it all off with a fresh strawberry pie. Coleman and I are about to call it a day and I'm listening to him talk to God - he's asking Him to help us be closer to Him. His faith truly leaves me speechless. I read something about that today...can't quite remember what it was, but it said something like if we are striving to do the right thing and ask something of God, that it will be heard and acted upon. I sometimes feel like I'm eavesdropping on their personal conversation and I know Coleman is being heard.

Hand It Over!

2009-05-24T22:58:00.003-04:00

What a celebration around here today. It all started last night, Jeff and Coleman were downstairs calling it a day and Spen and I came upstairs to hit the hay. I was so tired that I thought I was asleep before I hit the pillow.

It was about 12:30 and Spence said, "Mom, I'm getting a chill in my hands." I told him to see how hard he could squeeze my hand and I was shocked at his grip. He kept talking about it and honestly, I was half asleep and he gripped my hand again about 5 minutes later. Because this was a really long time compared to other "post-chill" episodes, I asked him if he wanted me to cut on the light. He asked for a notebook, so I grabbed mine from the nightstand and found a pen in my stupor. I have to say that the minutes that followed were some of the most rewarding in months. He could not believe it and neither could I. He started drawing a face and letters and turning the page to sketch as fast as he could - in case it "ran out." He quickly sketched the angel scene he had talked about and a man eating a slice of pizza. I watched him quietly and resorted to tears when I saw them in the corners of his own eyes. He said out loud, "Thank you God."

Embarrassingly, I admit that I watched for a long while and the last time I remember looking at the clock it was closer to 1:30. He woke me up twice in mild disgust...how could I? Needless to say, he woke up at 8:00 this morning, and was at it again. Today he has been into all the new sketch books and pencils just getting it all out. We celebrated with a sculpting contest, a Mexican lunch with Dad and he went to a special place to give a special thanks to God - that will have to be his secret.

Here's a shot of my favorite drawing from today. He's a die hard Mario and Luigi fan, so naturally, that came out too.

Coleman was absolutely exhausted this morning from a whale of a day in the pool yesterday but went back in this afternoon. He and his dad are camping out downstairs tonight and they secretly love when we leave them alone and they get into the movie channels together. I heard them listing all the movies they have to catch up on.

I told Jeff tonight that although we are sequestered from life outside our home, these have been some of the most bonding family times ever in our life. There is a part of me that admits I will miss them. Don't get me wrong, I won't miss the difficulties and feelings that we're hanging on by the one thread that once was a part of a rope, I'll miss the situation that forced us to be so tightly knit and so keenly tuned to each other...behind these four walls.

The Big Swim

2009-05-23T23:13:00.003-04:00

Both of the Cox brothers have always loved the water - they will stay in the ocean for a couple hours and then run back to the pool. Coleman told me he would swim today if I did. So, I ignored Spen's purple lips and jumped in the chilly water. Coleman swam so much today. We finally got him out of the water for a while and then he was back in after the sun set. It really put him in a good mood and he laughed a lot.

I had a good phone consult today with our practitioner and an MD out west. We came up with a game plan to attempt to get in place in about a week. This is really designed to go after his illnesses that aren't associated with mycotoxins but probably were exacerbated by mycotoxins.

We're having a good beginning of the summer weekend here and hope you are too.

End of the Week

2009-05-22T23:33:00.003-04:00

I was away from the house today for work and "personal maintenance." The thing that kept striking me was that everyone was talking about where they were going for the weekend, who they were staying with, getting out of the office early...then I realized it was a holiday weekend...sometimes you just have to laugh at how significantly this journey changes the family calendar.

I stopped in to see our practitioner and pick up some new meds for stomach repair and for my regimen of detox. Mold illness does tend to hit the female body in different ways than the male body. I'm so looking forward to consulting with the doc out west on Coleman's behalf tomorrow. I have a page full of questions and am praying that he has opinions that make sense to us here.

When I came home today, Coleman was so excited to tell me he hopped on the pogo stick. I forgot we had one and am surprised it didn't end up in the yard sale (which reminds me - THANKS too to my friend Sybil for helping out when she had her own house to pack!). He jumped over 60 times and was pleased with himself. He seemed to have a good day and we have now watched Paul Blart Mall Cop SEVERAL times.

Spen and I are wrapping up the week. We added two new meds for him today. He also told me he had several minutes of good hand ability after a "cold chill" this morning. He had one this evening and was able to draw part of a face. The return of his hand ability is fascinating to watch and inspirational to all of us around these parts. He was the first to swim this season and we hope Coleman will get in this weekend.

Enjoy your holiday! Every day is a holiday when you see the smiling faces of your children!

To My Fellow Mold Mom

2009-05-21T23:18:00.003-04:00

It's been a good day here. I have a new feeling of confidence about moving forward and getting new experienced opinions. We had a good PT appointment today - Coleman shot some baskets with us.

My heart is with my fellow Mom Against Mold, Andrea. She's the one whose blog is linked to mine in the upper right corner. If you've been following her epic journey, you'll know she is on one of the toughest stretches of life battling mold illness in her large family. Now, she has just said goodbye to her mother who passed away peacefully around midnight.

Our lives have been brought together by this illness. I truly believe God let our paths cross to help one another and to bear one another's burdens. We feel that it is our mission to soon help other mothers in this situation.

The thing that strikes me about her mother's passing is the same thing that struck me when my grandmother passed. This illness is such a long, drawn out one that it stretches across many markers like holidays, birthdays, seasons, birth and death. It waits for no one and it has no respect for simple normalcy in life and wishful normalcy in death.

I hope you find some sweet memories of your mother in these weeks ahead Andrea.

New Thoughts

2009-05-20T23:40:00.002-04:00

I missed posting yesterday - battling an allergic reaction of my own and doing some scriptwriting when I can squeeze it in. Happy to be blogging tonight. Coleman and I are in our usual spots - he's defeating villains on the Wii and I'm holding up the laptop.

This week we are going to take another look inside Coleman with bioenergetic screening. I always look forward to these and they continue to fascinate me as I watch him so carefully every day looking for the slightest change, the slightest progress, the slightest changing symptom, the slightest ray of hope. Sometimes I can almost guess what we'll find now that I have a better handle on the villains we're fighting in his body. It also helps to have such a good vantage point for watching this process.

I am also beginning a consult with an MD in Arizona who specializes in mycotoxins' effect on the brain. We are due to talk this week and I have some burning questions that should help rule out some things. I always feel like we're making some forward movement when we're trying new approaches, meds or experienced opinions. We could use some forward movement to jump start us again.

Spencer is improving quickly again. He continues to get a hand full (no pun intended) of "cold chills" down his hands a day. He always comes running to tell me and shows me how he can move his hands normally right after they happen. We are adding new remedies to his regimen on Friday as well and I'm waiting every day for him to pick up that pencil and write again. I laughed the other night when we had a sketch book and he jumped up to say he had the cold chill. I told him to draw quickly. He drew a nose and an eyebrow. It let me know that all systems are go in there and I could tell by the look on his face that he felt that too. He was thrilled to say the least. He is also coming back so strong on his schoolwork. He wants to do extra work each day to catch up and avoid a summer's worth of work.

From John today:
I will talk to the Father and He'll provide you another Friend so that you'll always have someone with you. This friend is the Spirit of Truth.

We have felt that Friend in these parts.

And today I realized that I left out a thanks to a fine friend and mother who gave up some of her time on Saturday to wheel and deal and that's Renee. Sorry to have left you off the list, here's a special shout out to you. I so miss your oldest child running through my house!

Still Working

2009-05-18T22:51:00.002-04:00

Today was a great day for Spencer. He really made some strides with his schoolwork. He called me so excited because he was able to do some math again. He's still having more of these "cold chills" that run down his hands. After they happen, he has normal hand movement for a few seconds. He had one tonight when I was having him try to sketch and for a few seconds he started to draw like his old self. The best part is that it really gets him so excited. Seeing him so happy is contagious for me.

Coleman and I held the fort down today. We had a visit from Ms. Becky and he wanted to show her how high he can jump now. I've been doing some more research on some of Coleman's co-infections - trying to line up some phone consults with docs who know mold illness and the co-infections. I'm hoping this is a way to move us off the plateau we are on.

Otherwise, we're working on the physical progress and the protocol. Working through one day at a time, my boy and me.

Thanks to our Angels

2009-05-17T20:28:00.052-04:00

On the way home from the yard sale yesterday I heard the song Calling All Angels. I thought how perfectly fitting the words to this song are for all the thoughtful female and male angels who flew in yesterday to make the day a great success.

Rana and Connie hard at work

Tracey shows the stuff

Jody can never get away from the drums.

Cherryl buys back a gift she once gave Grandma

Ray and Hunny, aka Killer

Wellman's Cookie Wonders

Let's Make A Deal Anne

Jody's Up Do

My SuperMom works the table

Gabi's Super Sign!

Rollin'

Connie and Marna fighting off the media

Cherryl avoids the press

At all costs...

Till Loren ropes her in.

The muscle men

Use it or lose it.

My life-long Buddy Shaun stops by.

Greg gets one short sit-down-on-the job

Conrad loves Ray's husband Brent too!

Marna models her 80's leather

And works a deal.

A celebrity visit from Jerry

We're on a first name basis.

The girls love him.

Work 'em Connie

The old timers from Park Group

Ray's Director Chair

Howdy Anne!

Daddy-O

Swain Man and Swain Boy

Sydney loves the Jonas Brothers' poster

Ali and her donated bike

Mama knows best.

Liv makes a purchase.

Go for the money Ray.

Tracey's Mother and Son Necklace

Mother and Son

Ray and her boys.

Matt Mays donated his Pokemon cards.

Evan Almighty

Baby Meets Baby

Hustle with Muscle

BIG sale

Finally at the end.

That's a Wrap

Thanks to the girls.

Coleman grabs the cash! - over $2K at the end of the day!!

Like the song starts, I need a sign to let me know you're here...I have looked for signs at every turn during this illness and they seem to come just when I need them most. Like my friend Jen feeding the words back to me that she said I told her over 10 years ago, "God never gives you more than you can handle." They sound good falling back on my ears. And the sign of just turning on the radio after a big day and hearing a song that makes me eternally grateful for my angel friends here on earth!

Post Yard Sale High

2009-05-16T20:46:00.007-04:00

I have a special post of thanks to make for the amazing duo that put together this yard sale for us.

Rana and Connie - what you guys have done has been the biggest uplift for me personally and for our family. You put your all into this and it meant the world.

And then to the faithful wrecking crew: Mom, Dad, Loren, Marna, Jody, Brent, Greg, Dave, Anne, Joe, Cherryl, Gabbi, Val, Tracey, you all missed soccer games, rushed back from family events, dodged the rain, took home a farmer's tan, negotiated with the best of them and gave us your time, the greatest gift of all.

I came home and got in the floor with the boys to count the loot. How often can you bring home over $2,000 from a yard sale? This was one of those days and it will be put to good use.

Then we came home to be gifted with dinner. Much gratitude to Chuck and Dawn for co-cooking a perfect summer meal and breakfast to boot. You guys put the icing on today's cake.

Coleman was so happy when I got home and wanted to know all about the yard sale. He loved looking at the pictures and was honored. The first thing he asked me was whether this money would help me with my work. My answer was a simple yes.

I have some great pictures and so many words of thanks to post, but it will have to be tomorrow because I'm so whipped. Tune in then for all the behind the scenes work!

Twas the Night Before Selling

2009-05-15T23:41:00.003-04:00

Tomorrow morning is the yard sale and I'm so looking forward to seeing my amazing friends who have given up their time and producerness on our behalf. Several people brought stuff by here and we packed the trailer all day. Jeff just finished up and as I walked by the garage and caught a glimpse of the trailer piled high with ropes across it my first thought was..."here go the Clampets off to Beverly HIlls." The girls tell me we have lots of good loot and I can't wait. I'm just excited to see the faces I've missed for months.

Today was good in general. Coleman's nurse came for her weekly visit and we talked about next steps in his making progress. We're at a tough spot and it's most difficult to know when to be patient and wait and when to encourage and manipulate opportunities. We've never followed our guts or hearts so much in our life, but when you get down to it, why else do we need guts and hearts if it's not for caring for our families?

Well, tonight it turning to tomorrow. If you can stop by and see us, we'll be at Midlothian Middle School on Midlothian Tnpk...in Midlothian Proper...shall I say Midlothian again? We're in the lower parking lot (there's also a yard sale in the upper parking lot) from 8-1 - stop by - do some shopping so your spouse or roommate or parents or siblings can complain about junk imports!

Goodnight from the Clampets.

For the Sake of Others

2009-05-14T23:21:00.003-04:00

I've been having thoughts and conversations with other "mold mothers" via the internet. It is starting to occur to me and us that when the time is right we need to combine our efforts and provide some accessible answers for people and parents who have nothing but questions.

Several people have emailed me to ask how they can be aware and how they can protect their family and how they can find out if they are facing mold illness. If we mothers are able and willing to come together to make some answers public, perhaps we will. I personally feel like I'm still so early in this long process that I have more learning to do as we make it over the big hurdles.

One thing is for sure, this is a real issue that is largely misunderstood and again I will say that it's easy to dismiss it until it comes calling at your door. It is worth careful thought.

Coleman had a good day. We are still at our plateau but were talking today about his small accomplishments that are so important. He can walk down to the bottom of the yard and back on his own now. He is beginning - truly just beginning to be able for me to touch him. I think it will take a while, but I can tell his response to touch is changing. Sometimes it's the little milestones that are the most important.

Thanks Sybil for the impromptu chili - it 's in good hands here!

Coleman was just telling me that God can triumph over anything and I believe he is right.

Back on His Feet

2009-05-13T23:34:00.003-04:00

Coleman was back in action today - ankle much better and back in the bounce of things. In some ways he seems to be at a physical and cognitive plateau and we're waiting patiently for the next good surge of progress.

He and I talked several times today and the future and it wasn't one of those days where he was sparked and interested in the future. He was feeling sad and on those days I have learned to shelf my expectations and just love him...try to stay positive, which can be tough and just love him.

The four of us sat at the deck table for dinner tonight which is the second time and Coleman felt a part of the family. The boys are so enthralled by their dad's stories from work. Jeff has this ability to make the most mundane of events into a story that has us all laughing out loud. His sense of humor is so good for Coleman and Spen. Tonight was no exception and he had us in stitches. Speaking of dinner, we were able to sit and enjoy our time together because KCR is a fine cook and delivered the most amazing meal - the chicken salad is all mine, I've got it on lock down and Coleman ate potatoes and some corn from Grammy Norma's garden stash. I never cease to be amazed and how food can be such a form of hospitality and help. I owe a lot of women a lot of meals. And thanks to Terri for bringing breakfast by - a great wake up call for Coleman.

Lights out for tonight, I have an early morning meeting and forgot how to set my alarm, wash my hair and wear a blouse with buttons!

Pilgrim's Progress

2009-05-12T23:42:00.003-04:00

That's what Spencer and I are reading for school right now. I confess to having forgotten what the story is all about. Spen and I have been talking about how Christian had a tough journey that lasted longer than it was supposed to and to top it off, he was carrying a great burden. This story seems to be right at home around these parts.

The thing that struck us today was how John Bunyan wrote the story while he was in prison. So essentially, the worst time of his life brought out the best work he ever did. We talked about how these really tough times are uniquely setting us apart to learn and share something important. That's tough for me to understand sometimes and I've been walking mother earth a lot more years than my boys. Even in light of that, I think deep inside they are beginning to understand this.

We're just pilgrims trying to make progress.

We had a good day. Coleman is getting around much better on his foot today. We walked outside and it was all I could do to keep him off the trampoline. Hopefully tomorrow he'll be able to walk like he was before and we'll catch back up. I feel like we're on a good path to healing and I'm beginning to notice subtle changes in his awareness and his understanding. We didn't get here overnight and we're not going to get out overnight.

What is it my mother always said? "You can't eat an elephant overnight." Or was it her mother? Or was it my grandmother? maybe my uncle. Whoever said it was so right, not only about this illness, but about anything worth working for in life.

A Month Now

2009-05-11T23:33:00.002-04:00

I was just looking at the calendar and realized that as of today, Coleman has been walking a month. He has come so far in this month on his feet. Ironically, today he was off his feet because he was going for it a bit much on the trampoline yesterday and landed on my foot. When he did he twisted his ankle a bit.

So today, the physical therapist took a look at it, and we're keeping it on ice till tomorrow. He got around a little bit today with his walker and hopefully in a day or two he'll be back in action.

We're still making progress here and he's looking forward to getting back outside and back in the jump of things.

Still going through the attic filling up boxes for the yard sale. I'm looking forward to seeing some friends. I have really missed seeing people in the outside world. But for now, I'm right where I belong getting my boys back in fighting shape!

Doing our best - staying prepared for the worst and trusting God for the victory.

A word to the Moms

2009-05-10T23:24:00.003-04:00

I went in the attic early this morning to pack some boxes for the yard sale. Every trip to the attic triggers emotions for me. The place looks like a cyclone hit it right now so I was trying to step over and around stuff, cracking plastic Easter eggs and knocking over boxes of the boys' schoolwork. I found the Winnie the Pooh stuffed bear that was a gift when I was pregnant with Coleman. Just looking at it brought back so many memories of how Coleman loved it. When I wound the crank and it played the same little music box version of the song that I must have heard 3,000 times when he was a baby, I couldn't help but get misty. I was thinking about my baby that is now 12 and how we just never know what is in store for our children when they are given to us. It's probably better that way, right?

Motherhood is a gift in every stage and in every form. I have shared some of the best moments with the boys during this recovery. A couple days ago Coleman and I were on the trampoline together and he was having a tough day. We were talking about what a difficult stretch of life this is for him. He asked me what was good about his life right now and I thought for a second and said well, the first thing was that he has a life and that we had each other. He didn't think for a second and said, "Mom, you're the best part of my life." It caught me off guard and had to be the best mother's day present ever.

To all of you mothers and step-mothers, surrogate mothers and want-to-be mothers - let's remember how loved we are.

Early Mother's Tonic

2009-05-09T23:28:00.003-04:00

Today was a great day around here. I spent some time with my mom this morning to make sure she knew what an exceptional mom she is, especially this year as she thinks about the mother she just lost. I find myself grateful for her willingness to help out in any way she's asked and to be supportive as we navigate uncharted waters. I gave her a card that has a glass case with a mom in it. The caption read "in case of emergency, break glass. So true these days.

My boys (all 3) have heard me talking with our practitioner and nurse about juicing for health. They gave me Jack LaLane's Power Juicer for Mother's Day and I had a ball making carrot, celery, and apple juices. I'm hoping Coleman will be able to drink some of these. One interesting (and healthy) thing that has struck me about his journey back to health is that he has only drunk plain water - no vitamin water, no Gatorade, no juice, just filtered water for the last 3 months. I know water is a key to life and it's the only liquid his body wants. He asked me to try some juice in the morning for him, so we'll see how he does. Yesterday he ate some fresh corn on the cob and steamed broccoli - so happy to see that.

Coleman had a really good day -his spirits were up, his energy was up, his humor was up and he did new things on the trampoline for me today. He actually ran in a circle on the outside edge of the trampoline for me - about four times round. I also noticed when we were walking today that he held on to me less and walked much more naturally.

Spence seemed to be feeling better today as well - he had a few days this week when he seemed to have a bit of a set-back after a good run of positive stuff. I guess those are to be expected, they just catch me off guard sometimes. He and I are going to work some this weekend on Pilgrim's Progress...trying to remember the plot...

Liz B., you were so kind to make Coleman's craving and you scored big time. He mowed through three bowls of spaghetti and I loved the salad and the boys had me make garlic bread. Tomorrow...the cupcakes. Thanks so much for going out of your way to bring it by - you made two happy families today - Happy Mother's Day to you!

Days like today should be bottled...juiced and bottled. Drink up if you have one of those days.

Slow Day

2009-05-08T23:07:00.003-04:00

Before I started this post, I read my friend Andrea's post - you can find a link to her blog in the upper right hand corner of this page. I have had so many comparative thoughts about medical versus holistic and in this instance, dealing with this multi-symptom illness, an approach that truly seeks to right the body at its core level is the only one that truly makes long term sense to me. This is probably the reason that Andrea and I along with scores of other parents have ended up where we are. It's simple, we all saw scores of physicians with no real answers, we all took medications with little results and we all tried holistic when we had no other options left and it has worked...for all of us. It feels better to know that you are working for true healing and real control of the bacteria instead of treating the symptoms alone. This illness buries deep in the cellular level and takes careful time and attention to eradicate.

Coleman was really tired today. It was one of his most low key days yet, just a slower start for him. There are days when he has to get his body moving and limbered up. He did make it out to the trampoline twice, which makes him exhausted and very happy. He's in good spirits tonight enjoying a movie.

Today is Jeff's birthday so we had steaks on the grill waiting for him when he came home from work. Spencer cut a Spanish fruit salad, he loves to hang with me at the stove every now and then. He loves to stand in a kitchen chair and make pancakes.

Signing off from the den for tonight. It's truly amazing to realize that you love someone not because of what they were or what you thought they were going to be, but just because they are, just because they exist and just because they are yours, because they are a gift from God no matter how life changes them. I will always be sad by the fact that such an amazingly debilitating illness struck such an amazingly innocent boy(s), but I will always be confident that there is a reason for the path we are on and footprints on that path because someone has walked this way before us.

More Technology

2009-05-07T23:36:00.002-04:00

Technology has been our friend and enemy through this illness. There are the friends of electronic air testers, air purifiers, bioenergetic screening and the latest hand held game Coleman is tackling - it really helps make his days more bearable. Then I think about the technology that didn't help - the beginnings of an EMG test, barium GI's, lung scans, etc. The interesting thing to me is that although none of those things helped Coleman, they were probably saving somebody else's life in another room.

The body and brain are truly the most amazing pieces of technology. Imagine how complex their circuitry is. I often think of ways our bodies were trying to tell us things we missed. Toxic mold is a big impersonator - it looks like chronic fatigue, respiratory fungus, brain trauma and more. It works at such a cellular level that it hides from even the best of technology. Why am I talking about this tonight? I have no idea - it's just been on my mind.

Quiet day on the home front. We are still targeting the repercussions of mycotoxins - the tough ones - and we're working in new protocol. I enjoy seeing his progress, and am truly beginning to realize that this will take an investment of time - and it's worth every minute when i see him smile or hear him laugh.

Interesting read today:
Walking down the street, Jesus saw a man blind from birth. His disciples asked, "Rabbi, who sinned, this man or his parents causing him to be born blind?" Jesus said, "You're asking the wrong question. You're looking for someone to blame. The is no such cause-effect here. Look instead for what God can do.

That was a sweet sound to the ears of a mother who wrestles with guilt on all fronts about this. I hope it sounds sweet to you too. Looking for what God can do...

Parallel Journeys

2009-05-06T22:28:00.002-04:00

We just got an email from my cousin Pam's daughter. It was a good report on her progress. I sat here thinking for a while about how much she and Coleman have been through. They are in some ways on parallel journeys and I'm so hoping there will be a day soon where their roads intersect and they can both celebrate what it really means to live.

They are both brave fighters and it's a good thing because they have both ended up in the fight of their lives. Even in the worst of those fights, when it feels like life is going down the toilet, I'm sure they would both tell you that they have felt the hand of God. I know that I have seen the hand of God on Coleman and it has changed the way I look at life, death and the in between.

I look for God in even the small things now and I find myself listening for a small voice inside.

We are ready for the rain to end around here and for Coleman to be able to enjoy the outdoors again. Until then, we keep the computers buzzing, the movies re-running and Spen's books cracking.

Audrey - it was great to see you and your boys today. That meal was awesome and Coleman ate half of the cantaloupe. You are one more reason we're spoiled and I truly miss making music with the likes of you!

Time to put this household to bed...keep the faith, keep the peace!

Good Little Things

2009-05-05T22:37:00.002-04:00

Did you ever notice how when you share a relationship with someone you care about very much, your total outlook on life can hinge on how that person feels and responds to your feelings? Today I was more than content but happy, truly happy. Unshowered but happy, unprepared but happy, unable to complete a third of the tasks I needed to but happy, unaware of the weather but happy, unplugged and happy.

I realized about halfway through the day that the reason I was feeling better was because Coleman was. He had a day where he was in good spirits and clear in his thoughts and aware of his progress. Maybe he felt better because of some things he got off of his chest last night.

He and I talked for well over an hour alone in the den with the lights out and he talked about so many of the things he has been through in the last few months. He has a tough time accepting some of the decisions doctors made and some of the ways he was misunderstood. He talked through a lot of them and I realize this has to happen on his own time, when he is ready. It's simply my job to listen and to support - not to correct or excuse anything.

The in home counselor came by to talk with me today and we both hope that Coleman will be able to talk with her soon, but she is more careful than me about timing. She feels we have one chance to do this right and earn his trust and ability to accept another person into his life. I think if she keeps coming by every week, he'll know how comfortable I am with her and eventually make a place for her. For now, he says he wants to talk with his dad and me and we're always ready to listen.

Grace and Mercy - two words that I never studied much growing up - at least not in a personal way and they are now words that I live by and I'm grateful for the way they write themselves on my doorpost every single day.

Rainy Monday

2009-05-04T22:47:00.002-04:00

A few days of rain around here makes one feel locked down. In between the showers today, Coleman took his physical therapist outside to jump on the wet trampoline. He didn't have any new tricks today, he was still feeling tired. We had a good visit. It does my heart good to see Coleman light up when she and Sharon come in the room. He immediately puts his fist up for a pound and seems to always have something he wants to tell them or show them. It feels like Coleman will have to reconnect with people one at a time when he feels more confident. The way his relationship with these ladies is growing gives me good hope and if you've got hope it's at least a thread to hang on by. I can think of several people tonight who do not.

Ramping up a couple of meds and the results are steady, sure and positive. Right now he's on-line deciding what would be a good birthday purchase. Deep inside he wants to go see a movie in June and there are several hurdles standing in the way. What we have realized is that he has to jump each hurdle on his own time in his own way. When we try to over-encourage or manipulate a jump, it truly backfires. He is more aware of his circumstances than I give him credit for.

We're about to turn the lights out on this rainy Monday. The only time I really like the rain is to hear the sound it makes on the roof in the sun room...good sleeping sound. Good night from a blessed mother.

A Son's Blessing

2009-05-03T21:47:00.002-04:00

Today I read about Isaac and how his youngest twin son stumped him...twice. Even so, his father loved him. Once the youngest came close to his father, deceptively dressed in his older brother's clothes, the father was duped when he caught the familiar scent of the outdoors on his son's clothes. I related very much to what he said to his son:

Ahhh, the smell of my son
is like the smell of the open country
blessed by God.

May God give you of Heaven's dew
and earth's bounty of grain and wine.

I love the smell of my boys when they come in from the outdoors - kind of like a fresh field with a bit of boy sweat and fresh air mixed in. It's a tonic that reminds me how much they love the outdoors and just how restless boys are. It's hard to keep Spence inside these days. He walks along the creek, deep in "pretend" mode and Coleman seems to feel better when he gets a bit of sunshine.

The rain kept us in most of today and tends to make Coleman more tired and sluggish so we kept it low key today and went through the playroom digging up goods for the yard sale. May I say that Spencer Cox will part with NOTHING! That's OK by me because he smells like the great outdoors.

Weekend

2009-05-02T22:15:00.002-04:00

I never thought that Coleman's recovery would be in such separate pieces...then again, I never thought we would wind up here in our lives.

There are days when he is really whipped and I can tell his body is hard at work attempting the healing process. Then there are days where he jumps forever on the trampoline and seems ready to try new things. Those days are so different and they are the luck of the draw. There are the "physical" days and the "thinking" days and we look for milestones in each. They are truly separate and we have to work with them separately.

Today was a physical day so he's wiped out in his bed with stinging quads. It does amaze me how quickly the muscle tone is coming back in his legs, one of the good parts about facing this illness young.

Barb - thank you for one perfect meal - Jeff and Spen were especially happy as they live for steak. We appreciate your carving out time in your day and your freezer for us!

It was a good day here. One more day marked off on the calendar of recovery.

Boxes for the Coxes

2009-05-01T21:41:00.003-04:00

A couple of my long-time TV girlfriends talked to me a while back about wanting to do something in a corporate way for our family. Rana and Connie decided to create a yard sale. It was going to be in Connie's yard...that was until a number of kind people kept asking me how they could help. Next thing you know, we have a yard sale committee and it's grown out of Connie's yard. I guess you call this a "parking lot sale."

I have included a link to the flyer. I'm not one that feels comfortable asking people for favors or to help on our behalf but through this situation, I have learned that people truly want to demonstrate their support. I have always asked for prayer and have felt the true power of like minded people lifting Coleman and Spencer up. I continue to be grateful for your remembering us and now, I ask if you have some spring cleaning to do in your closets, please feel free to join us on May 16 or to bring a box or two from your attic before the sale.

If you have specific questions, you can email Rana (rmorse@parkgrp.com) or Connie (cjervey@comcast.net). They can get you in touch with one of the girl-friends who can answer your questions.

I'm looking forward to being there and maybe seeing some faces I have missed for so long!

Coleman saw his nurse today and she noted his heart rate has come down nicely and he's breathing stronger still. He enjoyed his visit with her and liked telling her about his birthday. Both she and the therapist brought him a gift and he was so grateful. Thanks to everyone who sent cards and shout outs, I have read all of them to him and they mean a lot. All that's left now is for me to talk helium to him before the balloons fall.

Sybil - supreme maker of Shepherd's Pie (half gone) and fine selector of verses:

He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. We have plenty of hard times that come from following the Messiah, but no more so than the good times of his healing comfort—we get a full measure of that, too.

Happy Birthday

2009-04-30T22:18:00.004-04:00

We're wrapping up a good day for Coleman. He turned 12 today and got his wish for an ice cream cake

and a transformer still on its way here on a slow boat from China. We also got him a 3 wheel scooter. Before he was sick he used to ride the Ripstick. This one is a three-wheeled ripstick with a handlebar. He rode it some today and its great for his legs. His grandmother got him a RC helicopter which was great fun until it had a few nosedives on the deck. His favorite thing was blowing up the world's biggest water balloon...the popping was more fun.

There are streamers still hanging in the den, balloons from his grandmother and he's had a great day. A different kind of birthday, but we all stayed home with him and he loved it.

He did some physical therapy today and shot some baskets.

I can't believe my boy is 12 and I wish he wasn't fighting these battles on his birthday, but it's also a day to be grateful to God for the gift of life and to celebrate the fact that he's getting back a little each day.

Maybe this time next year he'll be celebrating life in a full way with his family and friends, but for now, we have enjoyed being a birthday family this April 30.

Looking forward to tomorrow

2009-04-29T22:48:00.002-04:00

Last night Coleman asked me to tell him about when he was born. I enjoyed more telling him about being pregnant with him than the 4 straight hours of pushing...I remember how Coleman and I always seemed in sync with each other. It seemed when I was carrying him that he always slept when I did and woke when I did. I remember keeping time to the music on my belly every time I was driving. I always felt like he was connected to the music. When he started taking piano lessons, the first thing I remember his teacher telling me was what great rhythm he had...I smiled inside.

Coleman is looking forward to turning 12 tomorrow. Ms. Becky is coming tomorrow for PT and Coleman shot a few baskets with me today. He plans on showing her that he can do that - he's uncomfortable being in the driveway, but he had some great shots.

Today wasn't the best of days - he felt really tired and neither of us was firing on all cylinders and we had one of those days that any two people who live in the same room together are bound to have. All is well that ends well and we watched American Idol - only to be floored to find Adam in the bottom two.

I hooked up today and it's interesting that the toxins seem to be stuck in my liver - kind of like Coleman's spleen - I'll add a couple of detox products, a bit different from Coleman's and start clearing out the carnage.

Coleman is walking much better, more stable and less holding on to us. Last week Becky told us that in adults, for every 1 day off our feet, it takes 3 days to recover. I was doing the math for Coleman and he had more like 70-75 days off his feet, so the physical progress I see is astounding. He loves to jump on the trampoline and turned a full flip yesterday. I think that's why he is really tired and sore today..a bit too much of the jump.

Margaret K. - so kind of you to make a meal for us, the boys are in to all things rice and Coleman ate the strawberries and loved them...yes, he hit the dessert too...as did we...back to the exercise bike.

I was ichatting with a friend today who said something like, if we didn't have the tough days, we wouldn't be able to recognize the really good ones. He's right and I'm glad he typed it to me today!

Tomorrow is a new day.

Wondering

2009-04-28T22:58:00.004-04:00

Today has been one of those days when my mind kept wandering off...to wondering. Wondering how long this process will be or how long it will be till Coleman feels back together again. Some days my glass is half full and some days I'm looking for a new pitcher.

Seems like I'm frequently reminded of the holidays and special occasions he has missed. On Thursday Coleman will turn 12 and it will be a different sort of celebration. I remember before he got sick he asked me once about taking some friends to Busch Gardens for his birthday. It's hard for a guy turning 12 to be in this position. He wants the four of us to be together and to have an ice cream cake. I also caught the occasional hint while he was on ebay for a new transformer. I do look forward to birthdays in the future when he's able to circle up with his buddies again.

I'm looking forward to tomorrow, when we actually get a synopsis of my health tomorrow. I've had my own symptoms that pale in comparison to the boys, but you know we moms have to stay well enough to take care of the kids. Hopefully we'll get an update on Coleman too.

Here's some dollar bill Oregami Coleman has been learning to do...the school of You Tube.

And Spence sneaking up on me today.

Looking Ahead

2009-04-27T22:15:00.002-04:00

My friend Mary McMillan has a great new weekly email update called Mary Mack's Minutes.

It's a fun, personal synopsis of undiscovered treasures of the Mid-Atlantic region. I haven't had the chance to tell her, but I look forward to them now and sometimes I make a mental plan to take Coleman (and Spencer) to some of these places when he is feeling better.
Isn't it true how we're never thirsty till the water's gone? Now that we can't do those things, I really wish we could...and hopefully soon will.
Today, Mary used a quote from Abraham Lincoln that stuck with me all day - The best thing about the future is that it comes one day at a time.

That's a motto we can use around here. The days seem to come and go with a similar rhythm to the one that came before. Routine after routine and after a while you give into it and it becomes actually comforting. We're into a good rhythm and trying to hold it there.

Coleman was so proud to show Becky how he jumps on the trampoline. We talked about how jumping on the trampoline can actually help reset the brain. She had him swing some with his eyes shut to work on his inner ear challenges. Later she had him stand on the floor with his eyes closed. Today he could stand for more than 5 seconds before he lost his balance. Last week he couldn't close his eyes and stand at all.

It seems true that his body is beginning to innately heal itself. I'm looking forward to seeing his next results in a week or so.

Spen is still sketching for me once a day - I think the process alone is getting him used to the idea again. He's also got a sponge ball that he squeezes when he's watching TV - and I'm looking for some good signs. He did a fair amount more school work today.

Val, thanks for thinking of us at Mekong - chicken fried rice seems to be THE basic food group here. Thanks to you too Mom, for the schooling and the constant errand runs - couldn't do it without you!

Mondays have become much happier around here and we're looking ahead, one day at a time.

A Good Weekend

2009-04-26T23:07:00.003-04:00

That's what we had here. The instant summer weather around here drew us outside some and it seems great for Coleman to be outside when he can. He jumped three more times on the trampoline today and can't get enough. Such a good workout for his legs.

He also ate some fresh strawberries and some other home cooked food. I'm happy to get some nutrition back in and we've started to move away from wheat in his diet and that's a tough one for anybody, but especially so if your diet is already limited.

Coleman just told me that this whole illness has been so tough for him and that nobody really knows. He says it has changed his life and scarred him. When he says things like this I am reminded just how much he has been through and how none of it has missed him. I do wish I could take some of it off of him because it's a heavy load for a young man, which is what he has become through this.

This big weekend has taken it out of us and we're going to shut it down.

Jumping for Joy

2009-04-25T21:36:00.006-04:00

Coleman has a big surprise for his physical therapist on Monday. He has talked about the trampoline a couple of times because she has suggested that he do some jumping.

Right before dinner he asked me to take him down to it and before we knew it he was on it and jumping. I have to say that this is the happiest I have seen him since this whole new life started. The most surprising thing was that he asked me to get on it and jump so it would help him jump. Now, if bouncing next to Big Mama doesn't make one nauseous I don't know what will. He had to wait a bit before he was ready to eat, but otherwise, his stomach was stable. That's the biggest deal to me. Once he started jumping, we literally couldn't get him to stop. We were a little nervous at first, but so happy for him. Just another step, or jump, in the right direction.

Spence and I have decided to track his hand abilities with some test drawings. He tries to draw something small and I put a date on it. It occurred to me that if we're encouraging Coleman to get on his feet to get his legs and feet working again, why aren't we encouraging Spen to draw and write to get his hands working again. He says it hurts some, but he seems to want to try. I hope that seeing his progress will inspire him.

Wheelers, thanks for the visit in the driveway and for some amazing pasta - the real thing. Your friendship is appreciated equally as much!

Today has really been good and I am grateful for it. A good day around here is not taken for granted especially when they end on a high note!

How Far Would We Go?

2009-04-24T22:48:00.004-04:00

I'm not sure if I confessed that I started reading the Message Bible over again, but I did. I was telling Jeff that it wasn't like finishing Moby Dick and saying, "there I've done it, mark it off as an accomplishment in life and I'll never wade through those thousands of pages again." It was more like a real desire to go back and see what I missed, to see if it was still so in tune with my current situation.

So today I read about a government official during Jesus' time who was connected enough to have heard the rumors that Jesus was performing miracles and that He was coming to his town of Galilee. Clearly the thing that struck me was this man had a son that was on the brink of life and death and he went right up to Jesus and told him his son was dying. Interestingly, Jesus was a bit put off and said, "Unless you people are dazzled by a miracle you refuse to believe."

I really related to the next part when the father wouldn't be put off. I picture him putting himself in Jesus' path when he said, "Come down, it's life or death for my son." Jesus told him to go home, because his son lived.

Now I wouldn't know Jesus if He came to my town, but I can relate with petitioning Him to save my son. I found myself wondering just how far I would go. Would I throw myself at His feet and beg...yes. Would I run behind Him pleading my case for a mile...probably. When you think about it, isn't it really amazing what we will do as parents for our children? What we would bargain? What we would give up? I have to say that I've had these thoughts so frequently that reading that today made me know that I wasn't the only parent who had been there. I had good company before me many years ago.

Today was a tough day for Coleman. Our visit with the nurse didn't go as well because he didn't feel as well. She was understanding and they had some good communication. There are just days when he doesn't have the zeal and it makes me realize how far he has come and makes me more appreciative for the days when his sparks are flying.

Spen worked at home with me today on his subjects and this weekend we are writing some poems for his English lesson. He's running some lines by me about war and battle...truth be told, it's because he's been watching Hogan's Heroes. He wanted me to add this picture of his guinea pig Nibbs in full bling.

A big hug to my longtime friend Tracey for delivering dinner. Yes, we went backwards and started with the cake. Seeing you just took me back to the old days at work when we had lunch together every day and wondered how we ended up in this crazy business. Seeing you with your son you worked so hard for makes you look complete.

You know, when we get right down to it as parents, what wouldn't we do for our kids? How far would be too far? I haven't found out yet.

For The Stay Home Moms

2009-04-23T23:05:00.002-04:00

Lately I have been thinking..."so this is what its like to be a stay home Mom." I have always agreed it was the hardest job out there and this post is a salute to those Moms who have made most of their existence in the den and kitchen like I have learned to do.

Today, I got the boys to try some Wii Yoga with me. I know this kind of exercise will help Coleman's balance and core strength so they gave it a whirl with me. When I turned around and saw both guys in the Tree pose with one leg propped up on the other and their arms stretched to the ceiling, it just cracked me up. It's one of those little rewards that stay home Moms get a bit more frequently...and deserve.

Becky, the PT came to work with Coleman today. His strength is coming back so nicely. He has always been a strong person, so to see him so weak all this time has been unusual. He can now throw a ball at (not to) me so hard that I have to duck for cover. Becky is not only working with his body and muscles, which she is encouraged by, but on helping him "widen his world" again. He has developed a trusting relationship with these ladies and its valuable for him right now.

It's lights out here, time for Coleman and I to talk through the good stuff about today and try to get him to a peaceful night's rest.

To my family members in WVA and TN, we are touched by your card today and blessed to call you family in thick and thin. Truly Obliged!

Food Network

2009-04-22T22:54:00.002-04:00

Coleman and I are getting ready for bed and somehow I got him to watch the Food Network with me. Honestly, I think this is the first non-kid TV that has been on in this room in months...well, there is American Idol and World's Funniest Videos, but I have to admit, if I hear one more episode of Home Improvement, I'm going to jump!

We're watching Dinner Impossible, which I've never seen, but the noteworthy thing here is that Coleman keeps saying, "It looks so good." I can't tell you how many times this poor guy's stomach made him truly gag every time there was any food item on TV. If you haven't thought about it before, the next time you happen to hear the Nick or Disney channel in your home, notice just how many gross food jokes/gags there are...It's great to see his desire for more foods waking up. He had me make tacos the other day and loved them. I'm working the nutrition back in the best I can.

While we're on the subject, thanks Joan for that meal of family recipes. It was a crowd pleaser and apple pie and boys go well together.

More than a couple times today I stopped to take mental note of the fact that Coleman was more himself today then he has been in weeks. It's hard to describe but it was in his responses to things, just the way he was moving around, his humor and he and his brother and Dad were throwing the ball so wild on the deck tonight I thought they were going to break it down. When he came back in he stood in the doorway of the kitchen and was talking to me. I looked over at him, just the way he was standing normally, not holding on to anything, with a ball cap on and laughing at something, it just took me by surprise because for a brief moment it was like it was before - like this never happened. Tonight I'm wondering what might be different in our lives if this had never happened. I confess I wonder where my focus would be. I wonder where Coleman's focus would be and I wonder how our relationship might be. I told one of my girlfriends the other day that I will always cherish these months of being Coleman's comrade in battle. Sometimes I think this time has aligned, realigned or at the very least, "allied" us for the inevitable teen years. At least a mom can hope.

Duck and Lemonade

2009-04-21T22:40:00.002-04:00

Tonight we are giving a bit of air time to Spencer who has been singing his favorite new song top to bottom for two days. It's the Duck and Lemonade song.

http://www.youtube.com/watch?v=P2nCsqujCsQ

Spen is adding more schoolwork each day, science is in the mix and he's able to work longer each stretch. I truly feel like he's going to be good as new before too long. You know how you can just tell when they are feeling more like themselves. If we can get his hands back in play, he'll be ready to tackle school again. At least for now, he's getting caught back up - he lost about a month in the process.

Coleman and I had a great day today. This Wii fit really keeps him on his feet longer and there are a couple of games where he stands for almost an hour straight. He and I also climbed a few stairs today. That is a combination of balance and strength that is the best challenge right now.

I remember when he first got really winded during this illness. We were walking up the stairs of a friend's front porch and he stopped halfway through because he was simply out of breath. So much of the doctor visits and one surgery was about his breathing. The pulmonologist really worked hard on his case (on both boys) and on our last visit he said how much of a mystery this was to him. Coleman's lungs were functioning at 60% then. I am sure his lung capacity is better, especially watching him jog in place with the game. The nurse says its better. We are going to get a home health measuring device so we can track it ourselves from day to day.

Big thanks to Paige and her family. I have never had the pleasure of meeting you, but you rank high in Jeff's book and we are grateful to you for coaching us through the environmental testing. Your delivery came today and the boys always get excited when the UPS truck comes. We'll look forward to cooking up those great meals...maybe Chef Jeff will do the honors. We appreciate your help and generosity. It reminds me how many people have lent their skills to us through this time.

We're about to turn in for the night and I'm watching Coleman fold dollar bills into a short sleeved shirt and pants to make a man. He has found so many things to help keep him busy here in our den. I'm grateful for everyone.

New Monday

2009-04-20T22:23:00.002-04:00

Tonight Coleman and I are talking about what we're thankful for. We just agreed it is the fact that this is one of those new Mondays, the ones that no longer count how many weeks he has been off his feet.

Today he was on his feet, for hours not minutes. He stood to play one of his Wii games and was so intent on beating the levels that he stayed on his feet. He also showed his physical therapist how he could run in place with the Wii. She's happy with his progress and is helping create challenges for him that encourage him to do things and go to new areas that he may not feel ready for.

He and I had a good talk last night about what he feels and doesn't frequently talk about. I am again amazed about how clearly he can describe his battles to me and it reminds me what his life has been reduced to and how that's a battle in itself. We feel like its our job to highlight all the little accomplishments and when we do, we usually get a smile from him. I live for those every day and it's funny, when I have my mind weighed with something, he can tell and he'll ask me to smile for him. Sometimes when you paint one on, it becomes real.

Spen worked with my mom today and she said he had marked improvement in his attention span and they added some Science to the mix. He's on a good path and I appreciate the art tip from the school art teacher today. I think we'll pull out some big paper and let him try some large brush strokes with a big paintbrush.

A thank you to Darlene for the world's heaviest pan of lasagna...I didn't know whether to eat it or climb it! It was awesome, we thank you and the neighbors thank you - tomorrow I'm going to eat a piece of pie while I ride the exercise bike. Think that might work?

It's lights out after a Monday of being on our feet! Thanks for caring enough to check on us.

Lay it Down

2009-04-19T20:55:00.002-04:00

Today was just one of those days - I have to admit that I'm just out of emotional gas tonight. It was not unlike any other day that some of you might have had when things just didn't go like you planned or hoped. I think it's God's way of saying, "Keep it steady, between the lines, keep your eyes on the road." It's a reminder for me that this is no short ride around the block but a good long cross-country drive.

All is well tonight, we just constantly have to keep a watch on Coleman's progress and medical protocol. It makes me truly appreciate the bright moments and the moments where Coleman is able to be proud of his progress. And it reminds me how valuable your prayers are, even more when things seem to start to go our way.

We did get a new bed for Coleman today. Betty's sister was just released from the hospital and she'll be caring for her at home now so they need the bed back. As in most things, the timing was great because Jeff ran out and we got a great fouton that is bigger, and he feels like he's a king in it. The better part is that its just another piece of progress for him and our den now looks less...clinical.

At the end of a day like this I finally sit down and am so glad for the lyrics my dear friend penned when she was navigating a similar stretch of life. They are thankfully new to me again today.

Lay down your burden, I will carry you
I will carry you, my child, my child
Lay down your burden, I will carry you
I will carry you, my child, my child

Cuz I can walk on water
And calm a restless sea
I've done a thousand things you've never done

And I'm weary watchin'
While you struggle on your own
Call my name, I'll come

Lay down your burden, I will carry you
I will carry you, my child, my child
Lay down your burden, I will carry you
I will carry you, my child, my child

I give vision to the blind
And I can raise the dead
I've seen the darker side of Hell
And I returned
And I see those sleepless nights
And count every tear you cry
Some lessons hurt to learn

Lay down your burden, I will carry you
I will carry you, my child, my child
Lay down your burden, I will carry you
I will carry carry, my child, my child

The Cox Detox

2009-04-18T23:33:00.002-04:00

The thing about "toxic" mold illness is that its all about breathing in toxic mold spores - it's not about being allergic to mold, it's about being more susceptible to mold illness. It's apparently genetic, like eye color, long arms, cancer genes, etc.

The thing I think of so often is how our toxic mold exposure in some backwards way actually brought to the surface other physical issues that stayed below the surface or were masked with far too many prescriptions for allergy meds or other things. It's like once your immune system is assaulted so heavily, it finally gives up and says you win and everything you bring out of the closet wins. Then what you realize you are left with is toxins in your body. Toxins clogging up your liver, kidneys or spleen - toxins under your skin...hence the latest household word for us, detox. We detox using several methods and the process of ridding your body of something it doesn't want to carry feels good. Soon, you realize we all live, work and play around so many toxins that we hardly have a chance...pesticides, fragrances, household cleaners, mold and fumes. Now I suddenly sound like a card carrying go green mom and I guess by necessity, I am. I do know that our family will have to make these choices and the boys will have to learn to adopt this lifestyle because they will probably always be more susceptible than their room mates, coworkers or friends.

Spence and I did another bioclense footwash today, mine looked far more toxic than his, but they are always fun to do. Coleman actually jogged in place three times today using the Wii fit. I couldn't believe he could do that, but he's got a soft mat for walking and he gave me a run for my money...literally. He is now my official trainer in the in home version of getting in shape. He picks the exercises and puts me through the paces - he said "See Mom, you don't need to go to the gym to get in shape."

Jessica, the only person that gives Jeff a run for his cynical money, thanks for dinner, who knew you could cook? We are glad you did! Wangee

Last night before we fell asleep Spencer told me he was looking forward to heaven, when I asked him why, he said because we wouldn't have any of this sickness there. He's the quiet one that keeps things in, so it touches the deepest part of me when he shares those thoughts. In reality he's had a stomach ache for five months, he coughed for 15 weeks and now he can't do his favorite thing, draw. But the good news is, he's showing great signs and we talked last night about how when he is able to draw again he has decided he is going to indeed be an artist for his life's work and he's going to be sure to draw some "God stuff." I'm just wondering what that looks like, so I just asked him and he said everything in heaven is what you want so he's going to draw angels worshipping God, a huge picture of Jesus' life, and ...pizza.

Good Friday

2009-04-17T22:57:00.005-04:00

We had another good Friday - seems like the good little things just kept coming today, all because of some thoughtful people who took the time they could have been doing something else and spent it on us. I can't tell you how humbled we are by that...and how much I'm going to be better at doing that when the tables are turned.

Jonnie, what an amazing grocery run, you were right on time and right on the money - we have several meals planned from your Trader Joe's pics and Murph thanks for making the run all the way across town to stork it. Darlene, how did you know how much Spence was looking for a playdate - thanks for taking him out with you guys and for the Arnie Palmer. Marna, your friendship and family recipe are both welcome in my home and heart.

Nurse Sharon came over today and was excited to see Coleman walking on his flat feet, she took a turn skiing on the Wii with Coleman and told me he was breathing more deeply this week. Those are the little things I love to hear.

This evening Coleman went back outside and he and his dad shot the pellet gun from the deck. He was a dead eye on the target (although he says he sees a few of them), which tells me his vision has to be getting better. That's a little thing I like to see and thought you might like it too.

Spen got in on the action too with his Red Ryder.

You know most days my mind is so full of deeply personal thoughts because I've spent so much time taking deep personal inventory about what our children mean to us and what we would do differently if we didn't have them or if they were suddenly markedly changed, and sometimes I try to write a poem or a song lyric (not much spare time these days...)

Nothing stands to reason
Before the great I Am
When looking for the courage
To ask for life again.

But the maker of the universe
that makes me feel so small
says if I boldly ask Him
He'll reach down and touch us all.

Simple words from the private stock. Enjoy your weekend.

Snowboarding

2009-04-16T23:05:00.002-04:00

That's what I'm watching Coleman do as we speak...on the Wii that is. Becky, our Physical Therapist came to the house for the second time today. Coleman had been talking about going outside and that he did for the first time in at least 8 weeks. It really lifted his spirits to be in the sunshine.

He and Becky threw the ball and she had him on his feet for 15 straight minutes. That was so awesome to see and you can't imagine how pleased he was when she said we needed to buy the Wii Fit for his therapy. So tonight I'm posting late because I have been snow skiing and wrecking all over the place. I can see where the balance board will be great for his leg strength...and yes, maybe even my sedentary side.

We're still working carefully with detoxing especially these days, it's just slow steady, careful work. The physical part will be back in place well before the cognitive and memory, but we see things little things come back to him each day and its always like a new discovery.

My folks are at the farm now and I have to admit I'm nervous when they're there. Jeff has plans for reworking some things in the basement and I'm hoping he can do that soon. He and I have now learned what a luxury it is to be able to just grab the keys, the kids and go. It will be a while before we take that for granted again.

Spen and I did some school work today and he worked much faster and seemed more focused today, or maybe more eager to be dismissed from his teacher...either way, he got his work done.

So from the top of the Bear Claw slope, Coleman and I bid you adieu.

Mid Week Haul

2009-04-15T22:48:00.002-04:00

There was a boy walking by me today in the den on his flat feet and he had a bit of speed to his walk and if I'm not mistaken, it was Coleman. It's the first time I have seen his steps have some rhythm and look almost like a normal walk! This gives him a feeling of confidence - doesn't exactly pull the rug out from under his mother either.

The other things we're working on are progressing too, but they will take some solid time. I was talking to Coleman and the man we're working with today and I said it's not like there is a true barometer for when his insides are getting better. I mean it's not like his spleen is going to finally walk across the room and we're all going to cheer...we are working on these issues one at a time, clearing them away layer by layer and finding more of him under every one. I can only say that this is a far more complicated issue that can hardly be explained by one label. The more mothers and patients I talk to, the more our symptoms line up. We trade tips on line and it helps because this illness feels like such an underground epidemic.

Last night was tough for Coleman so today he was a bit more quiet but was more on the move.

I took my turn at home schooling Spen and let's just say that even though my mom always said I should have been a teacher...that must have been somewhere before my hormones started shifting. Actually we did well and I can tell his reading skills are coming back quickly.

Debi - thanks so much for an amazing dinner - Spen ate macaroni "with salad in it" and the oatmeal bars are dented, very dented! Anne, your Subway run brightened Coleman's day and it was a good day for that. You guys have all shown such love to us, we look forward to repaying.

A small milestone for me while the boys were still sleeping, I finished reading the good book - all the way through. Fortunately, it has a happy ending. Funny at the end, there was a paragraph of reflective questions:

During the past year (and a half for me) what changed about your understanding of who God is?
What did you learn about HIm that you never knew before?
What challenges have you faced this past year that have shown God to you?

It seemed so written to me that I looked behind me left and right to see if somebody was looking over my shoulder. Then I closed the book and wondered, will I start over again?

Coleman's Favorite Video Link

2009-04-14T21:14:00.003-04:00

Today included some new exercises for Coleman -he used some ankle weights and an exercise band to work his thighs. He walked today in the den a few times. In general he was more tired and quiet today and I was reminded that although the walking is wonderful, he is still fighting off some tough stuff inside his body.

He has really made the most of his time in bed. He has a full palette of shows recorded on the DVR, games on the DSI and his grammy's laptop computer. He has shown me lots of spoof videos on YouTube and its easy to catch us around here singing them.

Our friend Anne turned us on to Tim Hawkins and this is Coleman's current favorite Tim song, "Cletus Take The Reel..."

Laughter is the best medicine, well that and some other stuff! He's working hard and being so cooperative with all the things he has to eat, drink and exercise.

Till tomorrow.

Monday - 9 Weeks

2009-04-13T22:23:00.004-04:00

This time last week, I was counting off 8 weeks since Coleman had walked. Now, I think we should start a new count for the weeks he has walked. Today was a busy day around here. We had our first physical therapy appointment. Becky was great with Coleman, and especially creative with ways to work with him without actually touching him. The biggest breakthrough we had with her was using a simple rubber ball - she had Coleman roll the ball under his feet for about a minute and after that he was much more able to put his feet flat on the floor.

She also taught him more leg exercises with the band and ball. She'll be coming twice a week. I was really proud of how well Coleman did with meeting her and being cooperative. He is so fueled by the praise he gets for accomplishing something new.

We also took another look inside both boys with Zyto today. Coleman has made strong progress but we still have some good work to do. I am feeling confident in a full physical recovery - all the signs are there and his strength is returning at a good rate. Oh the joy of having a young body that can recover quickly when given the right fuel. We're adding to and refining our approach this week and will be looking for some marked results.

Spen will add some more elements as well - it is interesting how many things come up identical in them. I think he'll make a full recovery in a bit more time. I'm afraid to put a guess on it, I have discovered there is no guessing in an illness like this. It seems there are surprises every day, it's just that now they're starting to be good surprises. Spen added one more subject to his schoolwork today, soon he'll be back in full swing, said my Mom with her fingers crossed.

This morning I stated the day in the beat up chair and read about King Hezekiah who seemed to make all the right decisions in his reign and prospered because of it. He then was hit with a catastrophic illness. He begged God for healing and God heard him and gave him a sign of His healing. The interesting part of the story to me is that the sign from God made him arrogant instead of grateful. As you might guess, things went downhill for him after that. Funny I read that today because isn't it so typical of us to start getting just a little sure of ourselves and for me, even just a bit presumptuous about it all. Reading that is just a reminder that every good gift comes from above.

I just asked Coleman what we were thankful for today and he said, "walking on flat feet"! There ya go!

Resurrection Sunday

2009-04-12T20:36:00.004-04:00

I woke this morning and really missed the habit of going to church. Something about Easter, just makes me feel like I should be in a place of worship other than the beat up chair in my sun room, but there have been some revealing moments in that beat up chair the last few months. There has also been something special about the four of us spending so much time together in one room, it sometimes feels like we're camping in the den.

Coleman talked this morning about how much he wants to go out of the house. He wants to go to Target and look around. He's not physically or mentally ready yet, but the fact that he wants to go sounds good to me.

He walked across the room a few times today and even sat on the stationary bike and pedaled for a minute. He seems a bit more tired today but he's had some big days and I'm reminded that his body is still hard at work healing and that takes a lot of energy.

Our in home nurse Sharon came today and when she saw Coleman walk she just said "shut up, I can't believe this!" She's planning to make sure physical therapy can start this week. I'm hoping with each passing day that Coleman will better be able to be touched so PT can be successful.

A Big FAT thanks for both of our families for delivering a full Easter spread to our door today. It's almost like being with family when you're eating all the traditional Easter things - 7UP salad, potato salad, ham and turkey...we're grateful for our families looking out for us and for being patient during the healing.

This morning I read a verse that talked about coming back to God and how He would be gracious and kind. The line that struck me was Clasp God's outstretched hand... Thank goodness.

Walking on Sunshine!

2009-04-11T21:48:00.002-04:00

It's Saturday and the norm has become for Jeff to give me a hall pass and I enjoy getting out of the house and running errands and today even running on a treadmill, which was right on time because all this wonderful home cooked food has found its way to my "sedentary side." While we're on the subject, thanks to Kathy for sending an amazing Easter meal - the fellas around here devoured the ham and the sticky toffee pudding took me right back to Scotland. I ate my share and everyone on the current team's share. Here's a shout out to our friends in Dornoch wrapping up the HBC club. Thanks Anna for the shout out to us, and you guys travel home safely...good thing Harrison established a running club!

So yesterday Coleman was taking two steps at a time and when I returned home today, he sat on the side of his bed, stood up with no help and walked right across the room...no walker! I just can't believe the progress he is making. He said the pain in his feet is less today. We're using good doses of B6 and niacin for these final steps.

Today Coleman is talking about where he wants to go when he's well - this is a first and we're so happy to hear it.

We all agree that Resurrection Sunday marks a great week for Coleman to rise out of that bed. You're right Cheryl L. - it was a Good Friday. - one more reason to be grateful for that day.

Thank you all again and again for praying for us - even if it wasn't your habit before, we are so honored you enlisted on our behalf. Obliged.

His First Step!

2009-04-10T19:42:00.003-04:00

I have always been sure that I didn't really witness Coleman's first step when he was 11 months old and I was always silently grateful to the amazing veteran women who worked at the daycare and to my mom that watched him some during that time. His first step with me was just a bit too comfortable and when I came into the daycare one Monday announcing that Coleman had taken his first step over the weekend, the ladies smiled so sweetly...how gracious of them to leave that feeling intact for a working mom.

Today was different though, today was all mine. Coleman walked with the walker at least four different times today. One of those times, he put the walker several feet ahead of him and took his first steps alone! He's unstable because he's still walking on the sides of his feet and because his legs are still weak, but the good news is he said his legs no longer have pain, just his feet. He still can't be touched by us, but his pain is lessening.

When Spencer came home from working on his schoolwork, Coleman walked for him and he was so happy for Coleman. He kept saying, "today is the day, today is the day!" It meant so much to see that because they have been through a lot together and Spen has been on a front row seat through this which hasn't always been the best seat in the house.

I think our latest additions of supplements are making some other positive changes. I noticed today that the dizziness is better as well. The small bumps to the bed that used to make him nauseous don't seem to have the same effect anymore or at least it takes more than it did before.

Each positive thing that happens for him, seems to sort of be traded off for one of the negative things he has been through. It's like watching the scale slowly tipping.

Could he eat any more chicken fried rice? I'm not sure, because it's still a staple. Thanks to Val for the variation with beef and broccoli - I'm the only one that can handle the sauce - here's to clearing the sinuses!

Coleman moved his walker in front of me today and walked right up to me face to face and the first thing that shocked me - besides the obvious - was HE IS TALLER!

So grateful!

On Our Feet!

2009-04-09T21:57:00.005-04:00

Again, that's what we were literally around here today. Without any prompting, Coleman asked me to bring the walker. He has crawled to it before and held his upper body up but today he pulled all the way up and did something very close to walking. He can't put weight on the bottom of his feet because of the pain, but he turned them to the sides and shuffled several steps.

We were shocked to say the least. There is a new sense of pride in Coleman and I think that will give him some confidence in other areas as well. We added some more supplements and nutrition for the body and brain today and are hopeful for more positive results.

Thanks Anne for the Chick-Fil-A run and how did you know I was craving Starbuck's best Arnie Palmer ever? You brightened our day and thanks Mom for the pharmacy run and for being the most patient teacher on the planet for Spen.

Last night we were going to sleep and that is still Coleman's toughest time of each day, which is why we always try to name good things to be thankful for in that day. Coleman reminded me of a line his dad quoted to him from the movie Evan Almighty. Morgan Freeman plays God and when the wife was facing a challenge, God asked her, "When people pray for courage does God give them courage or the opportunity to be courageous?" This boy's courage is something so strong, I can only stand in its shadow.

On Our Knees

2009-04-08T22:29:00.002-04:00

Literally, that's what we were around here today because Coleman went from crawling today to being upright on his knees. He went around the bed a couple of times then he held his weight up off the ground using Grandmother's walker - still not able to put his feet flat on the floor without pain, but we're working on it.

He also stayed on the floor for a bit to work with his old transformers, all of which he absolutely remembers every turn of. Interesting to me that these complicated transforming patterns are from about 4 or so years ago and they're all still there in his mind.

We are beginning to focus more on the cognitive portion this week - adding some elements that are brain food. - Speaking of food, thanks Mary Jo for the home cooking and the chocolate rabbit is now earless.

Spencer stayed on his schoolwork track and we're hoping he'll be able to add more each day. He seems to be losing some of his dizziness and back to watching TV and computer screens without a problem. I'm banking on his hand ability coming back soon. Spencer describes the pain in his hands exactly like Coleman describes the pain in his feet.

Every night Coleman and I review what we have to be thankful for in that day. He says that we're thankful he is no longer "trapped in bed." I still spend a fair amount of time each day researching toxic mold illness and the other illnesses Coleman is battling and today I was thankful that we are battling this during a time when we have the internet for digging and for talking with other mothers who help assure us that what we're dealing with is real - here's a shout out to Andrea and her house full in Arizona- keep celebrating your small victories, you are a hero among mothers!

As always,
Do your best
prepare for the worst
Trust God for the Victory.

Super Tuesday

2009-04-07T22:20:00.008-04:00

For the last 5 hours Coleman has done nothing but work on the new DSi which arrived today. His hospital bed is in the den looking out the front windows, so he keeps an eye on the driveway and the front yard. He has been waiting for this delivery for days and had me tracking the package on-line. It was due to arrive tomorrow but the tracking said it was "out for delivery." At about 6:00, I was telling him it would probably be tomorrow, when he sat straight up in bed and yelled out, "the UPS truck, the UPS truck!" You would have thought it was Publisher's Clearing House (which, btw - has ANYONE ever really won?) He ripped into that box like a shark.

He has been recording his voice beat boxing, surfing on line and taking pictures. He stood on his knees for at least 20 minutes to get the best internet reception. In my mind it came in the nick of time because his frustration level has been mounting the last few days and it makes it tough sometimes for the two of us.

But better than the timely delivery, was the fact that he got himself onto the floor today and crawled three laps around his bed! Again it felt like when he was a baby and started crawling - I think I was equally as thrilled. I was running behind him with a video camera...just like when he was a pup. When he finished, he was able to pull himself back into bed as well.

Coleman is not thrilled with pictures right now but he let me take some of his body exercising and said I could post one tonight.

Spen also got back into his schoolwork with Grammy and she said it was a slow but good start. I think he'll get back into the swing of things soon. Here's a chick he sculpted this weekend making him the Chick Magnet... and then enough of the photo album and off to trying my best to get Coleman to turn off the most beautiful little piece of technology in which I have invested in a long time!

Eight Weeks

2009-04-06T22:26:00.003-04:00

Well today is 8 weeks off his feet, but I'm here to say that today he was upright on his knees in bed and that's a start. I got some advice from a friend who is a physical therapist to tide us over until PT starts in home, so we added a couple of new things today. Coleman was all for them. He sat upright without support and did chest stretches with the band, he crawled across the bed a few times and then he decided to stand on his knees! It was great to see the accomplishment on his face and he did it by his own choice.

He is truly getting frustrated living in that bed and I swear I would have gone nuts myself by now, but I think the frustration is a form of fuel...whatever helps to ultimately drive him out of that bed is good by me. We just want to be safe with the progress.

Spen made a small start and picking up his schoolwork with my mom again today. He is more able to read again and she is going to write for him until his hands are back in the game. Let's just say he's less than thrilled and will probably be my mom's last student in many decades of educating kids...

Coleman is showing me a clip on You Tube of the flying wingsuit he wants to try WHEN he walks again.

So, I'm wondering if these suits have a special pocket for when I loose bladder control?!

Today I read about a King who made at least one good choice leading his people.
But you asked God for help and He gave you the victory.
God is always on the alert, constantly on the lookout for people who are totally committed to Him.

In this fast paced world, I feel like I'm committed to a lot of things...maybe too many. My commitments have definitely honed down to my family and I'm learning a new commitment or at least a new dependence on someone I've held at a comfortable distance for most of my life.

Maybe next Monday Coleman will be standing on more than his knees!

Sunday Afterthought

2009-04-05T22:17:00.003-04:00

This evening I ran out to pick up a pizza and while I was walking down the sidewalk I thought about how I almost ended this morning's post with Happy Sabbath and I decided not to to in case it might offend some. I have been moved by both friends and family who have offered special prayers, positive energy, high prayers, music, meditations, karma, laying of hands, and other things I have not heard of. Whatever place you are coming from, know that your thoughts on our behalf are completely appreciated.

I know I am verbal on this blog about my belief in God - the big G God, and it's only because He has shown Himself to me in an undeniable way through this. I have believed in God all my life and experienced Him in small ways before, but nothing like this. So please know I'm not trying to preach on this platform but to just be honest. I am so grateful for how far we have come and it feels like an injustice to credit anyone else. Now that I'm nearly a month out from reading this version of the Bible all the way through, I do know one thing has been drilled in my head clearly, if we seek God, He has promised He will show Himself to us. I don't remember reading anything about where we seek Him. Maybe in mass, maybe in a temple, maybe in the car, maybe on the battlefield, maybe while meditating, maybe in a pew, maybe it doesn't matter where our body is, but where our heart is.

So many of you have shown us where your heart is and there is no denying the strength we have felt. I truly never knew the value of people uniting on all fronts no matter where they are or what they believe. I feel like Coleman and Spen have so many moms and dads now and I'm grateful. Now, if you'll just pony up and pay for college, you'll be official parents...joking...

Today was such a red letter day for Coleman. He added exercises in bed and at one point flipped over on his stomach and pushed his body up into a "V" shape which meant his legs had a fair amount of weight on them. He dropped back down, but surprised the life out of me. He also did a push up in bed and peddled a bike wheel in bed that used to be his Grandmother's. I also felt the slight sparks of his desire to walk again and they are even more exciting to me.

We repeatedly tell him what a great guy he is. We figure the more we say it, the sooner he might start to believe it. This morning I pulled out a photo album from when he was a baby and he loved looking at it. He is getting some more memory back and its exciting to watch some of the pieces fall back together.

Tonight, I want to send a message out to cousin Pam to let you know that I am praying for your healing just as though it were already ours. I know your days are really tough right now and I wish I could see you face to face to tell you how much you have inspired me as a mother. Keep digging in for that strength, you're a mountaineer, so keep climbing. We're behind you every step!

This time I'll close with Happy Sunday and thank you all again for remembering us in whatever ways you choose. We are honored.

Sunday AM

2009-04-05T10:00:00.002-04:00

Wow, I can't believe I forgot to post yesterday. Could that be a good sign? Jeff was home so I was able to go out of the house and run errands - it felt so wonderful and I finally am able to worry less when I leave the house. Jeff's parting words to me were, "take your time." The weather was so awesome and I was surprised how much I was able to soak in the simple pleasures. The only snag was everywhere I went I would think about how much Coleman loved to go there. He loves the open air malls and has always loved being around people.The truth is that when it comes down to it, I feel guilty when I enjoy the simple pleasures that he can not.

I look forward to the day when he is able and wants to be around people again. He was always such a social critter and got his energy from being around other people, I miss seeing that side of him and will welcome it back with open arms and an open front door for his friends' return.

We literally watched the tree in our front yard bloom the other day and it occurred to me that we've watched three seasons come and go outside our window since this all started last fall. This all started when we were clearing the fall leaves, then we had that big snow piled on the window and now we're watching the trees bloom. Coleman is getting really frustrated with being off his feet and I'm hoping it will help spur him on to work toward little goals one at a time.

Coleman was doing some crunches in bed yesterday and then was holding himself up on all fours - so good to see. We ended the day with a fine meal from Anne - thanks for the homemades and the delivery! It's Sunday AM and I miss being in church, it will be wonderfully strange to go back. We're off to a round of exercises!

Week's End

2009-04-03T21:34:00.002-04:00

Today was a great day here at the Cox house. Coleman is getting so much more agile in his movements. Today he washed himself and was reaching all the way behind him to get things off the end table. When he did his exercises in bed, he lifted his leg almost upright and was able to bring it down slowly. He's also sitting up in bed on his own.

The IVNA nurse came today and she could not believe the difference in Coleman. She said it was like he was a different child. She stayed in the room with us for about an hour and Coleman was able to talk with her some and offered her some of the amazing basket that was delivered by our buddies at Elevation today. She took him up on some treats and asked him if she could come back next week. He told her yes. She has the perfect disposition for Coleman, truly like she was hand picked.

She also hand picked a physical therapist for us, who will probably start in about a week. We're keeping close tabs on Coleman's progress and adjusting accordingly. Always trying to keep him thinking positively and remembering what a champ he is.

Ready for the weekend - thankful for a good day! Enjoy yours - talk to you tomorrow.

Big Mama (that's what they call me round here)

Released!

2009-04-02T21:46:00.003-04:00

As long as we're going with this new thing of taking the message at face value, I have a new entry. Ten days ago I read this:

Fear nothing in the things you are about to suffer, but stay on guard. Fear nothing. You are about to be thrown into jail for a time of testing-ten days, it won't last forever.

I have to admit when I read it, I was truly scared and felt like something awful was going to happen. There have been a couple of bumps in these ten days.

This evening our PCP called to say that all 20 of Coleman's tests appear to be negative or normal. At this point we have agreed to not hold the invasive studies over our heads. He agrees that putting him in the hospital now could make him worse. As long as he's making clinical improvement here, we'll be able to hold those tests off. With that phone call, I truly felt like we were released from prison...and then I remembered what I read ten days before.

Sometimes these things I read are a bit too specific - maybe I'm reading between the lines - maybe I'm seeing what I want to see - maybe there is a God who's trying to get some things through my thick head.

I'm not sure we'll have a solid clinical diagnosis for the illnesses Coleman is fighting, but there are several symptoms that line up, the strongest of which is the original overdose of toxic mold spores. I guess I had my doubts about an illness like that, until it showed up on my doorstep and since then I have read countless articles, books and blogs about real people living with the exact same symptoms we are.

Today was better than yesterday for Coleman and we're moving forward carefully. The look on Coleman's face when I came in the room to tell him he didn't have to worry about painful tests right NOW was the most beautiful thing I have seen in a while....yes, I got misty and we thanked God for hearing us again. This is exactly what Coleman needs to make progress not from fear but from "fun". We're having our new weekly visits with the in-home nurse tomorrow and soon are set to start with a physical therapist in home as well.

Today we talked about the things he would do when he walked again - he says "if" I say "when". He wants to go "wing suit diving" and I want to hike up a small mountain.

We were also shown some great love from some awesome girls in my life. It's amazing to watch how the females flock together when it comes to our families. Thanks to Murph for the pharmacy/chili delivery, to Cherryl for the hamburger, school, and bank run, to Cindy N. for a great verse in a card today about how God knows our every detail, to my mom for dropping off some more exercise equipment and to at least four more girls who sent me emails that hit the spot. Who out there ever had the nerve to say we were the weaker sex? Banded together, we females are strong like rope!

No April Fool's

2009-04-01T22:02:00.002-04:00

Still no phones ringing today and I'm trying not to be preoccupied by it. Today was one of those days where you feel like you take one step back after two steps forward. I can always tell when Coleman's body is working hard to fight off the illnesses and today was one of those days.

All in all, he still had improvement today and did a great job on his exercises -up to 20 reps now with the band - twice today and hopefully three times tomorrow. Today more of the tough time was keeping him feeling like he is making improvement. And truth be told it was one of those days when I wasn't as resilient as I would have liked to be, but we worked through it and are looking forward to a better day tomorrow.

After eating a big dinner - thanks Ma Brown, we watched America's Funniest Videos which is a family favorite and then for the first season ever, we honored the fact that we've become American Idol junkies.

Time for lights out now - no foolin'!
Sleep tight friends!

In the Right Direction

2009-03-31T22:11:00.003-04:00

You know what I've been thinking about today? How quickly something can become routine in our lives. Like when you get a new car or add an animal to the family and before you know it, you don't remember life before it. I have felt that way about this journey many times. Days turn into weeks and suddenly you're pushing a wheel chair or reminding your child of his past and it has become routine. Maybe we're made that way to adapt and adjust and to become resiliant when necessary. I do know that this illness threw a big cog in our wheel and brought us to such a dead stop and then it stripped us down to the bare basics - just being at home and really pulling back the layers.

De-layering has made me realize that too much of my life has been about chasing something down, worrying about bad investments and overlooking what's right in front of me. When perspective is forced on us it feels like someone has our face in their hands saying stop, look at me, invest in my life and really know me. Somewhere in the back of my mind I worry that when we make it through this, I'll lose sight of that. Our pastor talks about that frequently and now I know why. These days and nights with Coleman, Spen and Jeff have been a gift. Yes, it's a struggle to care for someone 24/7 and yes sometimes I run into the kitchen to get what's requested, forget why I ran in there and get called back for something else I'll forget...trying to disguise my eye roll along the way.

Today I was surprised again at Coleman's ability to exercise. Twice today he did 10 leg lifts, 20 leg pushes with the band and 20 quad push downs on the bed. He seemed to be mostly motivated by how thrilled I was...whatever works! We are also doing some of the Brain Gym exercises together - crossing left and right sides of the brain and body.

Twice today I heard Coleman singing - just a line from a movie song or a commercial, but that was music to my ears. He enjoys doing things with his hands (the opposite of his brother's challenge) and made this clay flower for me.

No news on the medical side today - just another day of progress for which I am grateful. I woke early again chasing down thoughts in my head and in the quiet of the morning with everyone asleep, I read this:

To you O God belong the greatness and the might
the glory the VICTORY, the majesty, the splendor...
You hold strength and power in the palm of your hand
to build up and strengthen all.
And here we are O God, our God
giving thanks to you
praising your splendid name.

I worried a lot less today.

Monday - not always so bad

2009-03-30T22:35:00.005-04:00

I decided early this morning that I needed to declare Mondays as a day to set aside fear and to untie the knot in the gut that I always feel. It's the day I mark the weekly count for Coleman's not walking and today is 7. Instead I told Coleman that we need to move without fear and be thankful for all we have seen and learned in this.

Today Coleman and I were having a frank conversation about how "life can be crap". I had to agree looking at the obvious, but I also started to list the ways we have seen God in this crap. Tonight Coleman thanked me (and he included the other two guys of the house) for sticking with him through this and that's the same ways God has stuck with us.

God is good, even when you think He is not. We're watching this unfold day by day and we can't flip ahead to the last chapter to quell our curiosity, we just have to turn one page at a time, doing our best, preparing for the worst and trusting God for the victory.

Today the phone did not ring once on the medical side and it gave me a chance to catch up on some paperwork and to stop early on and just be thankful for the little and big things that we have been blessed with like the fact that Coleman did two sets of very simple exercises with his legs today and he did it with a small level of pride and his movement is increasing every day, almost rapidly increasing - it's like the systems are firing again.

I don't want to jump the gun, but I see great progress in his body today and the fact that we're both still up is probably good. He's busy defeating someone on the DS and I'm busy looking at the face that I love, my fighter and my hero!

Ready for the Week

2009-03-29T22:07:00.004-04:00

Today has been another good day. Coleman continued to eat well and today we discussed physical therapy and our next steps.

Although the complete want to isn't quite there yet, we talked about the need to exercise the muscles. He did some of the simple exercises one of the docs showed us in the hospital - one to just push his knees down in the bed to flex the quads, which are the first to go to jelly, then lifting his feet off the bed one at a time. He also used my workout band in his hands and flexed his legs in it. To us, that was a great step forward and one that also begins to open the door in his mind to walking again.

This was a big workout for him and in the end we let him know how proud we were of him to be turning the corner enough to start this. I think physical therapy in home is starting soon and we want him to be ready and open to the idea.

Spen also brought him down one of his transformers today and it's good to see his mind and hands work furiously.

One of our friends and Scotland mission trip buddies just got back from Scotland last night returning from a prep trip for this year's team. She brought us two great flags of Scotland and two enormous pieces of paper signed by our Scottish friends. I have the flags on display in the den and hopefully they will inspire Coleman.

I'm not sure what this week will hold in blood test results, doc calls, etc. and I confess that Sunday night sometimes gives me that pre-exam feeling in my gut, but we talked today about how God has stepped us this far and we are going to be bold and keep walking...well soon enough, we'll be walking!

Here's one of my favorite pictures of Coleman in Scotland last year, getting nailed by snowballs on the famous Royal Dornoch golf course..FORE! Here's a shout out to this year's team preparing to leave, we'll miss being with you and Godspeed!

Saturday Eat-a-Thon

2009-03-28T20:52:00.003-04:00

For some reason each day starts with Coleman eating bread and butter because his stomach is queezy in the AM. I do believe he set the eating record today for this illness. His appetite is returning with vigor and he's got some weight to put back on.

Although his menu choices aren't our norm, I'm happy for every calorie that he can put in. He is also able to take nutritional supplements again - multi vitamins and fish oil, the natural anti-inflammatory. We have also added some herbal remedies for fungus and bacteria.

Coleman's body is working hard to combat and I think today has been perhaps his best day yet. He is watching Nick's Kids Choice Awards and I'm noticing how much he is holding his head up in bed and turning all the way around to talk to me.

A few minutes ago I read some inspiration in the Costco magazine (who knew?) in an interview with Michael J. Fox who battles Parkinson's Disease. He said,

Optimism doesn't mean you get to skip the bad stuff. If you're truly optomisitc or have a capacity to hope, it should allow you to look at what's bad and really get its measure, and say, What is the extent of this? It's the courage to look at something and say, However bad this is, it isn't bad infinitely."

We're not sure what lasting effects this string of illnesses will have on Coleman or even on Spen, but we are sure there is a full measure to learn from and to seek God through.

Still eating...

End of the Week

2009-03-27T17:27:00.004-04:00

Today has been an absolute whirlwind of medical events from 8 AM until this very minute at 6:00 PM.

Spen is back home and his cough is settling down. We were finally able to run a bioenergetic screen with him today and there are some core physical issues that absolutely mirror Coleman's - just on a much smaller scale. His immune system seems compromised at the very least and there are spatial orientation issues that would explain his inability to draw or write. His other core issue is his large intestine and a bad stomach. It has always been clear to me watching from a front row seat that both boys were exposed to the very same thing at the very same time (going back to toxic mold exposure) but their bodies handled it in different ways. Coleman also had a TDAP vaccination during the middle of October which may have played a part - there are certainly all kinds of views on that topic. We started a regimen with Spencer today that is designed to target his immune system, lymph nodes and gut. Because he is already feeling better I think if we can get his immune system boosted and keep him away from mold, he'll be on a good road. He still says his lungs feel like "crushed paper bags" when he runs too much. I'm glad we have a path for him.

We also re-assessed Coleman and in one of the most critical areas, his inflammation had decreased about 70%. I truly think that is why he is thinking more clearly and more engaged, even if he doesn't remember a lot of things. The most interesting thing about looking at him again is that with some of the initial off-the-scale elements greatly calmed, there was the ability to more clearly assess things. One issue that recurred in four places was the inhaled yeast Cryptococcus neoformans which most typically affects the nervous system and the lungs. Now, I'm no doc and I know there are several forms of this from pulmonary to meningitis, but there are some specific symptoms that Coleman has had from the beginning that I have yet to see listed on any symptom list like premature feeling of fullness after only a few bites and lower abdominal pain. The one thing that makes the most sense to me is that this long string of physical events absolutely started in the lungs in November - with an inexplicable cough...for both boys.

A wonderful IVNA nurse came here today and one marked area of Coleman's improvement is that he stayed calm - nervous but calm when she came in the room. He was patient while we did the paperwork and she was awesome and allowed him to do everything he could to do all the necessary things that involved touching his skin. He tied the tourniquet, he applied the numbing cream, he removed the tape. I thought for a minute that he was going to insert the needle...not. Yes, it was extremely painful and he started to loose control but focused right back with us and did a great job. It didn't hurt that I gave him a Three Musketeers during the task...he has started to crave sweets again. It's odd, Coleman has always had a high threshold of pain, so it still surprises me to see him recoil in such pain over a tap.

After the nurse left, I was furiously researching Cryptococcus and called our PCP to ask about adding that blood test to our existing list. This illness really needs a spinal tap, but you can test for the antibodies and antigens in the blood. I also emailed the infectious disease doc we have seen as well as the pulmonologist(s) since he and I have had good conversations about fungus and yeast.

We tracked down the codes for this blood test thanks to great PCP nurses, traveling nurses and friend nurses. We will find out Monday if we have ample blood already to do these tests. As fate would have it, one of the tests may have been pulled in the wrong tube so we may have to do a "take two" on that draw and if we do, we could add the Cryptococcus test then. I don't have the heart to tell him we might do another draw yet, so we'll enjoy the weekend for now.

In general Coleman had a good day - just eventful. He loses his humor and regresses a bit when he has a medical task, but today was generally very good.

The IVNA nurse said she is now scheduled to come into the home once a week to assess his condition, etc. We are also going to start some very simple physical therapy so Coleman can learn some things he needs to at least try to do with his legs. I am thinking that getting used to her coming in once a week may help just begin to break down his fear of being with people besides the three of us. He knows his family and loves them, he is just not ready - this is just another symptom and we know he'll beat it.

Today I was reading about King David and how he made his plans to move the Chest of God the fist time and didn't run them past God and botched (word chosen for Wendy) up the moving of the Chest of God - there were consequences and the next time, he laid out his plans before God, they worked perfectly. That's what we're trying to do, talk to God about it, and not botch it up. That chest was all about a place to worship. We have learned to worship in the kitchen, on the couch and in Coleman's bed. I used to think God might be picky about that, I don't anymore. He just wants us as we are, where we are to acknowledge Him.

Jeff just walked in with PF Chang's chicken fried rice - a Coleman staple while on the mend...did I mention he was eating again? Enjoy your weekend!

Next Steps

2009-03-26T14:08:00.003-04:00

It's Thursday and Coleman and I are catching up. He did a great job this morning giving himself a bed bath. I can tell today that in slight ways his nauseousness is dropping. I think it will take some time, but he has made more movements today that he couldn't before. We were agreeing that a week ago, he couldn't have done what he did this morning. It's great when he can recognize that.

I'm keeping a close watch on his leg and arm movement looking for improvement.

Tomorrow is the blood draw in home and I am thinking positively that he'll be ready and won't feel too much pain.

I had a long day on a shoot yesterday and it looked like Jeff and Coleman had a good guy day yesterday.

Spen is on his way home with his grandparents. They went to a tropical animal "habitat" and my mom said it smelled damp and moldy and unfortunately Spen started coughing again and hasn't stopped. They cut their trip short and I so hope he's not back to square one with the non stop coughing. It really does reinforce in my mind that so much of the brunt of this illness is mold exposure. We have work to do, not only to get them both completely well but to get their immune systems strong.

Here's to another day of getting stronger!

Turning the Corner

2009-03-24T18:41:00.004-04:00

I try to be careful when I evaluate good news - I just don't want to get my hopes up too much, but there is no denying that Coleman has begun to turn the corner today.

He woke smiling and said there were no bad dreams. He ate well again, as the carb king - two orders of Chick-Fil-A fries just a few minutes ago. He has laughed quite a bit with us today and even made some jokes that took some thinking. There are lots of gaps in his mind but we've had some good talks about next steps. He still can't be touched without pain, but is able to sit up in bed, hold his head up for a long while to sketch in his book. I have seen him smile more today than in the last several days.

I went out to a meeting today and felt more confident, no knots in the stomach and tomorrow I'm going to work a full day on a shoot, my first since his illness and he's good with it. There are bills to pay no matter the circumstances, right?

We have introduced some new products to stimulate neuron regrowth and hopefully that's part of the good turn. I spoke with the neurologist's nurse today to ask her to speak with me about Coleman's progress when she can.

We're still praying to see signs of God's hand because it's the reassurance we need to make decisions each day.

We're not out of the woods by any stretch, but we've on a path that will hopefully lead in that direction.

I'm signing off to the sound of Coleman laughing, really laughing at a movie...music to my ears!

P.S. Thanks to my buddy Mern for covering me and making my kitchen look like a craft services table - I'll be 3 sizes bigger when we get beyond this!

Monday Monday

2009-03-23T21:29:00.002-04:00

Today marks 6 weeks since my young man has walked. It's always a tough pill to swallow each Monday.

Today we added some neuron regrowth meds and another step up on the herbal antibiotics. Coleman was tired today but managed to put away three things of french fries...I can't believe what I let this guy eat now.

All very quiet on the home front today - no word on scheduling the blood draw.

Spen left impromptu this morning for a short trip with my folks. It's probably good for him to get a break. It's hard for him to be "half-sick," and sometimes hard for him to be patient around the house.

Our "medicine man" is booked solid this week, but we're going to try to get Spencer squeezed into his schedule toward the end of the week. He has been doing well on his detox mix and had two nights in a row when he went to bed without a stomach ache. Hopefully we're on the right track.

Happy Monday!

Little Milestones

2009-03-22T21:48:00.002-04:00

I'll take the little milestones when ever they come. Today marked almost two days with Coleman having no "twitching" spells - maybe better called muscle jumps that would happen each night right as he would fall asleep and then a few times during the day. They were painful to him and he dreaded when they would come. So that's a good milestone in my book.

Coleman continues to eat well and ate one of Murph's cupcakes tonight. (Thanks for the big meal run Murph and Murph Sr.!) He also woke up this morning and asked me about his shoes. For that last six months or so before he got sick he had such a shoe fedish - wanting to stop into every Foot Locker and look over the shoes. He got a pair for Christmas that he loved and I brought them downstairs. He lifted an eyebrow when he saw them. We talked about how he would have them on when he walked again - I must say he wasn't so quick to deny it this time, another little milestone.

He really laughed hard today when Jeff, Spence and I sucked in the helium from his balloons and sung, another little milestone.

When he falls asleep at night, he doesn't have the same struggle with all the negative things in his head, another little milestone.

He's pushing himself up in the bed now, we don't lift him from behind anymore, another little milestone.

I think we have a good distance to go and my prayer remains that he'll make strong progress this week so that we can avoid the heavy invasive testing.

We're still upping the herbal antibiotic every day because we want to stay aggressive against what ever is ailing him, and then maybe we'll have some big milestones.