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12/21/09
This is our busy season with Madison. Last week we went to ortho and found her scoliosis a couple degrees worse and her hip still displaced. He seems to think that her hip will self correct by age 10 or 12, but if it gets any worse he will go ahead and break it and screw it in straight. That doesn't sound fun at all. I thought he was pretty optimistic about it correcting on its own, but then he is making us come back in 9 months instead of 1 year...just in case. Hmmm...
Today we saw ENT because Maddy has been telling me she hears beeping in her ear. Sure enough it is still packed with fluid even after 3 rounds of antibiotics. So, come January after clearance from cardiology and immunology we will schedule a trip to the OR for tubes. Funny thing is, she passed her hearing test in the fluid filled ear, but failed it with the "clean" ear. I guess that one has permanent damage from before. it does explain why she has a hard time telling the difference between "M" and "N" sounds. That's all for now! Next stop in January is Immunology, GI and cardiology...wish us luck!
12/14/09
Sorry it has been so long! We got locked out of our own website for a while, but with the help of a few great friends we are back!
Madison has had a great couple of months. Still many irons in the fire, but everything is on hold until her next re-check. As many of you know, December is the month we recheck with almost all of her specialists, so there will be lots of updates in the next 30 days. Whats new? Well, this winter Maddy is NOT doing IVIG! She finally, for the first time ever, is making her own antibodies. Enough so, that they felt like she didn’t need help with the monthly infusions.
So far, she has had a chronic sinus infection for over a month and 3 ear infections, but that’s not so bad! In a couple weeks we see about getting another set of ear tubes, that ought to help. Her teeth have been falling out like crazy. We had 2 pulled in the OR and several capped and filled while she was sedated, but now they are falling out and new ones are coming in like crazy. Its fun to go through normal milestones, that’s for sure.
Her schooling is going really well. She is still hospital homebound and not allowed to go to school, but the teachers from the local public school come everyday for about an hour to help her. That didn’t seem to be enough, and she was learning so much so fast that I went ahead and purchased a homeschooling program and we do it everyday as well. She is reading and writing on target and seems to only have issues in language and math so far.
In the next few weeks we will be seen by GI, for a new g-tube and eval. They will be pleased as she is eating like crazy…although still not gaining weight, but not losing either which is good! We will also see ENT for a possible trip to the OR for ear tubes and sinus surgery. Immunology is in January to reevaluate schooling, but I can already tell you they wont consider it…its just a formality really.
Then comes cardiology, which I am not sure what is going to happen. Its been 3 years this month that she had her last valve replaced, and we have known for a while that this one was not so good. Well, as winter set in, her circulation has been terrible and she has to take 3 baths a day just to warm up! She can’t sleep alone because she doesn’t produce enough heat either. Also, everyone says her heart sounds different than it has. Since it cant be getting better, well, its time to recheck our status.
Lastly, we will see ortho. Her legs are getting worse and worse…I just don’t know what they can do! The right hip turns in so bad and the scoliosis is so much worse than it was. When she grows she gets curvier and curvier. Other than all that…she is rocking, loving, thriving and living it up! She still does ballet, and wants to take karate! She is also trying to stay involved at Unity, our church, and loves to meet up with friends at the neighborhood pool when she can. She can even swim by herself. Check back soon to see how everything went and thank you for loving, praying and wishing Maddy well!
3/4/09
Maddy went to Endocrinology today to see what is up with all that has been going on with her. Long story short...they don't know. The good news is, they are curious so we are going to keep working on it! She has seizure type activity, facial grimacing/limb locking, etc, that he feels is typical with hypoglycemia...the question is why does she has spontaneous hypoglycemia??? We have been preventing these events by giving her a lot more protein and today they tell me that she has growth retardation because of lack of protein...what??????
This kid does protein shakes everyday! Obviously, we have some sort of assimilation problem I am guessing. They want to run a bunch of test, of course they do, and I am sure they will all come back normal because she is not a diabetic and she is not typical hypoglycemic. So, unless they catch the blood work when she is having a spell, it will be normal. Last night we got NO sleep because of her pseudo-seizing (as they call it), her limbs were flying everywhere, today she is fine. What is the difference??? I don't know.
They want to try to feed her slowly 24/7 and see how she does. That means wearing her backpack (an IV type bag full of liquid food along with a small pump fit in there) with her g-tube feeds hooked up to her belly 24/7. Sounds great to THEM. To me, I see kids and dogs tripping on the cord and pulling out the button in her belly, her back hurting from carrying a back pack and just the general pain in the butt of it all.
I guess it is worth a try since nothing else is curing her, it just makes me frustrated since we have come full circle. Maddy was hooked up 24/7 until she was 3 1/2 years old, I thought we were done with that. Two more weeks until the do more tests...until then, here are some pictures of her rock'n new PURPLE glasses :)
2/11/09
I'll start at the beginning for those who don't know. Yesterday I went to my Grandmothers house in Canton to take her and Maddy to lunch. We went to Walmart first to do Grandma's grocery shopping and Maddy ate a couple gummie worms rolled in sugar as we walked. I think she ate about 2-3. Soon enough, she said she felt sick and asked to be carried, so I picked her up. She said she had a fever, so I felt her and she was soaking with sweat, but not hot.
Her face had a look on it that you could tell she was really not feeling well. We drove across the street to Cracker Barrel, Maddy's favorite, and I thought if she ate some food, she might feel better. Well, she curled up into my lap and took a seizure. It was a full blown seizure that I haven't seen her do in years! I didnt know what to do since I had my 89 year old Grandmother with me, I was sooooo far from the hospital...I was just at a loss and was so scared!
I took her to the bathroom and she stopped seizing, but then fell asleep instantly. I slapped her a bit, put cold water on her, I just couldn't wake her up. I wanted so badly to call 911, but I knew they wouldn't take her to Egleston and I didn't want anyone else touching her. i threw her in the car and drove like a crazy woman to Egleston myself. By the time we got there, she was awake and feeling much better (of course). the strange thing was so had amnesia! She had no recollection of the whole day, she was asking when we were going to go to grandmas!
That really got me upset because that meant there was some serious brain activity going on. In the emergency room, they did blood, urine and a CT of her head. Everything came back normal, thank God. What this means, is that she probably has dumping syndrome...nice name, huh? Her pancreas freaks out when she eats sugar and dumps HUGE amounts of insulin into her and then her sugar bottoms out. We have been noticing her feeling sick after eating for quite a long time and have had her "grazing" to avoid getting pale, sweaty and curling up on the couch feeling sick.
We didn't know if it was her heart reacting to the blood draining to go to the GI system, or a sugar issue, or what! She just has so many things on her plate, it is so hard to figure anything out. This has her now going to Endocrin and Neuro (although they are never any help) for more tests. I have to finger prick her every time she feels sick o check her blood sugar. If I get poor results, which I think I will, that will explain everything and we can work from there with no more tests.
I already spoke with my homeopathic person and she gave me some GREAT ideas about how to feed her to avoid the insulin rush, and this morning, IT WORKED! We may be able to do this medicine free, which would be nice. I emailed our GI doc and at 1am he has personally asked Endocin, via email, to get right on this...thank God for him, I don't know what I would do with him.
I never, ever, ever want to see her do that again, so I will do whatever it takes to make her better. This morning she is back to her normal self. I happen to have a few more grey hairs :) THANK YOU Mom and Dad for being there when I needed you! you just know she had to do this while Dan was in China, right???? Maddy has no clue what happened, but please pray for her health, and also pray for Ben who has full knowledge of what happened and is very concerned for his sister.
THANK YOU!!!!
2/04/09
We took Madison to the eye doctor this week and she is finally going to get some help! We have been doing eye therapy for several years now and it has helped, but all of a sudden, since she started reading, we have noticed HUGE issues with her sight. Her head was literally in the book, so much so that I couldn't see to read with her! When writing she was about to poke her eye out with the pencil she was so close.
Now the weird thing was, her vision is actually about 20/20. You knew there had to be something weird, huh? After hours of testing, the problem was that Madison needs prism lenses. In a nut shell, she was seeing as if she was looking from the bottom of a prism through to the point. Everything in her world was squished together.
With these new glasses, they are purple of course, She sees everything normally. When I put them on, the world looks like I am looking at it through those circus mirrors that make everything look wide! Really weird, but very exciting that she will be able to see so much better. I'll send pictures as soon as she gets them home!
She still has about 6 other eye diagnosis, some of which we are thinking about surgery for, but for now, we are going to stick with her cool purple glasses and see how well she does. THANK YOU Dr. Berger in Roswell! YOU are the BEST!!!
1/27/09
Today was our visit with gastroenterology. It started out as humorous because Madison pitched an enormous fit when she had to have her blood pressure taken, and was screaming at the top of her lungs, "I will not sit down EVER AGAIN". Quite embarrassing actually being that 3 of her GI doctors were 5 feet away from us working behind the desk. The funny part came when they stood up and looked to see who was screaming and saw Maddy.
Their eyes about bugged out of their heads when they saw her and they stood there smiling ear to ear chatting about how fabulous she looked and that they couldn't believe that was the same sick girl they had been treating for 6 years. They were all smiles and as I was fighting her I am thinking are you all blind and deaf??? She is a monster, help!!!! In retrospect, It was a funny moment :) As our Doctor examined her, he mentioned that she is now officially diagnosed with Celiac Disease.
You have to be on a gluten free diet for 1 year, with no symptoms, to be "labeled" with the disease since there is no sure test for it. A year ago, her surgical procedure saw "damage consistent with Celiac disease" then you have to treat it as such and see if that works, for us, it did! Our newest problem has been her electrolytes. Things are all out of balance causing her to suddenly become very, make that VERY irritable, have her fingers and toes go to pins and needles, leg cramps, very dry skin, pseudo seizures,...the list goes on and on.
She is also having what GI thinks maybe be erratic sugar issues. I already know she has a history of sugar issues such as spontaneous low sugar and she needs insulin whenever she gets really sick or has surgery. I don't run around testing her sugar all the time, but I used to, and it looks like I might have to again. That ain't going to win me any friends around here, I can tell you that.
It has been months now and she is still sick as a dog if I feed her more than a couple tablespoons of food at a time..could be a sugar rush, they are thinking. Bad news is, in 12 months she has only gained 1lb. Yup, ONE pound. That is really, really bad for a kid of her age. If we can get the eating thing fixed, then maybe she could gain some weight... So, now we are scheduled to go see an endocrinologist, another "ologist" I thought we were through with. Oh well.
1/16/09
Great news...Maddy is reading! I couldnt believe it myself. I thought she was acting ready, so I bought her some things from School Box and sure enough she is reading!!! It amazes me that she can do it. She has some brain/language/vision issues that I think are going to be a little bit if a challenge for her, but nothing we can figure out.
I am so proud of her continued to fight to learn and to be just as normal as every other kid out there. I told her she is my Reading Super Hero :) A lot of people are asking about her current heart condition and all I can say is your guess is as good as mine! We are still sitting where we were, which is good, but I have that gray cloud kinda lingering above my head all the time...waiting...
I suppose if she gets through the winter without getting sick and that illness further deteriorating her heart, then we will see what summer brings. Lots of times, the heat can bring on other problems, growth spurts cause a lot of issues too. I am not LOOKING for problems, trust me. I try to have this equal balance between optimism and realism.
Her oxygen levels are a bit lower than normal, which makes her a bit tired, but not too bad. The only things we notice is her eating slower and feeling pretty darn sick if she gets a full stomach. The blood rushes to the GI system after we eat, and her heart cant take it so she feels faint and has to lay down. For now, we just let her graze all day so she doesnt fill up.
We see cardiology in a couple more months and we will see what he says then, but until then...we are loving life and thanking God for all that she has learned this year. She is really becoming such a little girl!
1/2/09
We made it! Maddy was home for Christmas and her birthday! I try to always think positive, but I have to admit I was holding my breath a little bit :) She had a great Christmas and our whole family was very blessed in so many ways. I keep waiting for Ben to question Santa, but we had so many out of the blue Christmas miracles, I am beginning to believe again too! I am not sure who to thank for making our season so magical, but you Secret Santa's know who you are, and we are so very, thankful!
Maddy woke this morning and couldnt believe it was her birthday and that she was 6. I think this is the first year she really gets it, and that was really exciting for her. We made a trip to Target where she got to spend her gift cards and we came home and baked a gluten free cake.
Dan is already back in China for another 2 weeks, so Mimi and Papa will be coming over to help celebrate this afternoon. I try to not live in the past. We all know where she has been, what was expected of her (or NOT expected of her), and the whole long story. That is what it is, a story, in the past and over and done with.
Today, I celebrate the fact that she is growing like a weed, talking all the time and is becoming very understandable. She is also only on ONE medication everyday. Today is not about the past, and the future isnt here yet, TODAY is her sixth birthday. She is happy and beautiful and celebrating and THAT is awesome!
1/16/09
Great news...Maddy is reading! I couldnt believe it myself. I thought she was acting ready, so I bought her some things from School Box and sure enough she is reading!!! It amazes me that she can do it. She has some brain/language/vision issues that I think are going to be a little bit if a challenge for her, but nothing we can figure out.
I am so proud of her continued to fight to learn and to be just as normal as every other kid out there. I told her she is my Reading Super Hero :) A lot of people are asking about her current heart condition and all I can say is your guess is as good as mine! We are still sitting where we were, which is good, but I have that gray cloud kinda lingering above my head all the time...waiting...
I suppose if she gets through the winter without getting sick and that illness further deteriorating her heart, then we will see what summer brings. Lots of times, the heat can bring on other problems, growth spurts cause a lot of issues too. I am not LOOKING for problems, trust me. I try to have this equal balance between optimism and realism.
Her oxygen levels are a bit lower than normal, which makes her a bit tired, but not too bad. The only things we notice is her eating slower and feeling pretty darn sick if she gets a full stomach. The blood rushes to the GI system after we eat, and her heart cant take it so she feels faint and has to lay down. For now, we just let her graze all day so she doesnt fill up.
We see cardiology in a couple more months and we will see what he says then, but until then...we are loving life and thanking God for all that she has learned this year. She is really becoming such a little girl!
1/2/09
We made it! Maddy was home for Christmas and her birthday! I try to always think positive, but I have to admit I was holding my breath a little bit :) She had a great Christmas and our whole family was very blessed in so many ways. I keep waiting for Ben to question Santa, but we had so many out of the blue Christmas miracles, I am beginning to believe again too! I am not sure who to thank for making our season so magical, but you Secret Santa's know who you are, and we are so very, thankful!
Maddy woke this morning and couldnt believe it was her birthday and that she was 6. I think this is the first year she really gets it, and that was really exciting for her. We made a trip to Target where she got to spend her gift cards and we came home and baked a gluten free cake.
Dan is already back in China for another 2 weeks, so Mimi and Papa will be coming over to help celebrate this afternoon. I try to not live in the past. We all know where she has been, what was expected of her (or NOT expected of her), and the whole long story. That is what it is, a story, in the past and over and done with.
Today, I celebrate the fact that she is growing like a weed, talking all the time and is becoming very understandable. She is also only on ONE medication everyday. Today is not about the past, and the future isnt here yet, TODAY is her sixth birthday. She is happy and beautiful and celebrating and THAT is awesome!
Madison's Update Archives
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