Sunday, January 3, 2010

2010


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.

Friday, November 13, 2009

Up Periscope

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.

Tuesday, October 20, 2009

60 Days In

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.

Friday, October 2, 2009

45 Days In

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!

Friday, September 18, 2009

Our Life

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!

Tuesday, September 8, 2009

A Touch of the Goodbye Blues

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.

Wednesday, September 2, 2009

Happy Birthday Spen and Dad!

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.

Saturday, August 29, 2009

The Weekend

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!

Wednesday, August 26, 2009

Getting Into the Groove

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.

Monday, August 24, 2009

A New Week

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!  

Friday, August 21, 2009

A PICCture is worth a 1000 words

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

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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Thursday, August 20, 2009

Stares

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

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

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, August 19, 2009

Wednesday

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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Tuesday, August 18, 2009

At long last

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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Monday, August 17, 2009

We made it

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..

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!

Saturday, August 15, 2009

One More Day

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.

Wednesday, August 12, 2009

Testing

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

Tuesday, August 11, 2009

Coming Together

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.

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

Thursday, August 6, 2009

Less Than Two Weeks

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.

Sunday, August 2, 2009

Soaking Feet

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!

Tuesday, July 28, 2009

Medical Jargon

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!

Friday, July 24, 2009

Moving Quickly

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.

Tuesday, July 21, 2009

P.S.

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

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.

Monday, July 13, 2009

Phewf

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!

Friday, July 10, 2009

Catching UP

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...

Wednesday, July 1, 2009

Done with the Drugs for Now

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.

Saturday, June 27, 2009

Catching up on the hugs

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.

Monday, June 22, 2009

Into the Meds

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.

Tuesday, June 16, 2009

New Meds

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!

Thursday, June 11, 2009

Quick Check IN

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!

Friday, June 5, 2009

Great Expectations

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.

Friday, May 29, 2009

Thankful

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.

Monday, May 25, 2009

Memorial Day

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.

Sunday, May 24, 2009

Hand It Over!

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.

Saturday, May 23, 2009

The Big Swim


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.

Friday, May 22, 2009

End of the Week

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!

Thursday, May 21, 2009

To My Fellow Mold Mom

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.

Wednesday, May 20, 2009

New Thoughts

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!