Sunday, January 3, 2010
Friday, November 13, 2009
Tuesday, October 20, 2009
Friday, October 2, 2009
Friday, September 18, 2009
Tuesday, September 8, 2009
Wednesday, September 2, 2009
Saturday, August 29, 2009
Wednesday, August 26, 2009
Monday, August 24, 2009
Friday, August 21, 2009
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
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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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, August 19, 2009
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!
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
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
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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Saturday, August 15, 2009
Wednesday, August 12, 2009
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...
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Tuesday, August 11, 2009
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
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.
Sunday, August 2, 2009
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
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
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 . 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
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 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
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
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
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
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
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
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
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
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
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
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
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
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
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
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!