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12/26/07
We did it! We spent our first Christmas Eve AND Christmas day AT HOME in FIVE YEARS!!! It was great. Even though Maddy is still hooked up to TPN 16 hours per day, it somehow worked out that she was on her break during the running around times. She really enjoyed it, as did Benjamin.
Healthwise, she is really no better, still sick to her stomach after eating the littlest thing, but mentally she is so very, very happy. That means a the world to us. What a miracle, after all these years, to finally be home!
We are Looking forward to, and wishing you, a happy New Year!
12/23/07
This week we went to Maddy's GI Doc. He said that the testing for Celiac is very hard, especially with her T cells not functioning and her B cells working well, the tests are thrown off bit and hard to trust. The Pathology report suggested damage consistent with Celiac, but her blood panel showed negative for Celiac. Next week will go in for another test to check the genetic marker for Celiac.
We are on a 100% Celiac diet (gluten free) and plan to stay that way to try to keep her healthier. It was pointed out to me that the word gluten is derived from the word "glue" and for a person with severe constipation, that doesnt sound like a good idea! www.netwish.org sent us $100.00 to help buy all new food for her. Her food is very expensive and has to be free of Oats, wheat, barley, rye, MSG, nitrates, artificial flavors, fillers and many other things.
We are also starting a new drug (what is one more???) to put pro-biotics in her belly in hopes that maybe it will keep any "bugs" from backing up from her intestine and making her vomit. Although I dont think it is an "answer" to all our problems, I think it may very well help.
Today is the day before, the night before Christmas!!!! Although we are home on IV nutrition, we ARE HOME! She has had a sinus infection and fever all week (you may remember the time we almost lost her due to sepsis in her head from a sinus infection) so we have been very cautious, not taking her out at all. Tonight we will go for a car ride to look at Christmas lights, she loves that, and then pray to GOD that we can actually celebrate Christmas eve and Christmas day at home for the first time in FIVE YEARS!
I am very excited at the thought of it, but a small piece of my heart hurts for the kids that are not home. Sadly, the motto among the parents at the hospital is "better to have them in the hospital Christmas, than to not have them at all". Please say a special pray for those kids, especially this one www.emmie.info She has DiGeorge like Maddy and is suffering terribly with the whole vomiting thing right now.
Wish us luck, we only have to stay well 48 more hours!!!! Merry Christmas :)
12/17/07
Yesterday, Becca finished Marathon #2 (out of 5!) for Madison! Read her latest blog here, and follow her journey on www.beccabigsby.com
Yesterday I completed #2. Sorry I do not have any great pictures...I will explain later in my blog:)
Sunday morning I woke up at 3:30 in the middle of a complete downpour. Just my luck, I have never run a marathon without the rain. But, my luck changed and at then at the start it cleared up. Remington took me to the start line around 6:30. He had the camera then, but it was so dark we did not get any photos. Then at 7 sharp we started to run.
For the first mile I checked on the status of my legs. I was still not completely healed from my last run, so I was fairly nervous about this one. We started the run with all the 1/2 marathon runners, making it a nice size crowd. I was just cruising along and suddenly realized I was running about a minute faster per mile than I should be. But, it felt good so I went with it.
Then at mile 7 the 1/2 marathoners went their own way and the solitude began. I ran the next 5 miles a nice pace and crossed the 1/2 marathon mark right around 2 hours. The biggest change I made in this run is I ate a lot more of those gross gels and gummies in order to keep my energy up. It was very helpful. The one problem I did face was the heat. It was so much hotter than Atlanta that I dehydrated really quickly.
In order to make this one less on my joints I did walk a little more then the last, but I think that was necessary for the next three to come. At mile 23 Remington meet me in his running close and ran the last 3 miles with me. It was great to have company. He was a real cheerleader. Then at the finish all we had was his cell phone to call Sean to pick us up. So all our pictures are on his phone.
When we figure out how to get them off, I will be sure to post them. Then Sean, Remington and I went out for lunch and a beer :) Remington and I hopped in the car after lunch and headed home. The most amusing part of the day was watching me get out of the car after 4.5 hours of running followed by 6 hours in the car. It was a very slow process.
Today I am felling pretty good as long as I do not have to bend my knees. My personal training clients got a kick out of it this morning. I think they see it as revenge.
12/14/07
We are still alive and well! Madison has been trying to eat some gluten free food this week...very, very little, but it has stayed down! She is still on 100% IV nutrition for now. I think Monday I will attempt feeding her through her G/J-tube. Her mental health is much better. She was able to go to therapy this week and was sooooo happy about that! She lost a bit of ground in speech, but not too much in occupational or physical therapy.
God willing I will have a nurse start coming 6 hours per day on Monday. It is so very hard to manage her hooked up to IV and get Ben ready for school at the same time. She wants to follow me and it just cant be done. Hopefully with the nurse we can get around easier and she wont feel so trapped until noon everyday.
Our days have been so jammed packed. Yesterday after we dropped Ben off, she went to PT, then speech, then to the pediatrician, then her nurse came and drew labs and changed her port. She was exhausted by the end of the day! She has gained most of her weight back (thank God for the lipids!) and other than a diaper rash from the antibiotics, the pediatrician was very pleased with how she was doing. Next week we have our first appointment with the psychiatrist, and several other ones we have missed while being sick for a month. By then I will be carrying around 2 backbacks with fluids, I might need a psyc appointment myself! ha ha ha.
That reminds me, I was accused of "unauthorized use" of a handicap parking space ( I have a special license plate) by some old lady with a cane because Maddy didnt "look" handicapped!!! Now, I'd like to say I took the high road and was thankful she didnt look different than a normal kid, but I couldnt help myself. Instead I told her that she was a 2x cardiac survivor and that maddy had probably been through more in her short 5 years than she had probably been through in her whole life.
I also told her we werent lucky enough to have a temp hang tag because Maddy was permanently disabled! Okay, then I went a little too far maybe and I lifted Madison's shirt to reveal the "bionic woman" that she is. The lady was horrified to say the least...GOOD! Anyone can buy a cane in a drug store :) That'll teach her.
PLEASE pray for Becca who is running marathon #2 this weekend!!! Not even 30 days after the first one, she is running ANOTHER 26.2 miles to help raise money for Madison. Remember to visit her blog at www.beccabigsby.com to see how she finished. Please pass it along to your friends and co-workers so we can all support her through this amazing journey. THANK YOU BECCA!!!!
12/08/07
Really now, how do they expect you NOT to have breakdown coming home??? Before we even left the hospital her suction machine was delivered for us to take home. The minute he left, the nurse said "Oh, this is the wrong one!" It was then supposed to be switch out when we got to the house. On the way home we stopped at the pharmacy to get her prescriptions.
The pharmacist, who I love, said each and every script was written wrong! He said there was a dose of Zoloft to kill a cow...does she weigh a lot for her age? he asked. Are you kidding me??? He got all that straightened out and advised me that nobody would carry her antibiotic the way they wrote it and I'd have to call them Monday. Interrupt an antibiotic for 2 days??? That didnt sound good. So off to the register with my grocery bag of drugs.
One single prescription alone was $120.00 AFTER insurance! It would have been $744.00 without it, can you imagine? Take a deep breath and remember that this is why she has her fund. We get home and her nurse comes to re-access her IV port (which couldnt be done by our hospital nurse). She brings with her TPN and all the supplies that go with it, you cant imagine all the stuff.
Poor Dan had to run out and buy a college size fridge for her room because each infusion bag is like the size of a gallon of milk , and we get 7 at a time. Thank you Home Depot for giving us a discounted one and telling us to return it when the bigger fridge comes in. (again, thank God for her fund!) So I get the 15 minute run through on TPN and we are on our way!
The suction machine company calls and guess what? They dont carry the machine we need. So now we are at home at 8pm, with a tube down her nose that we cant even use, and they are "sorry" and wish us luck. What do they expect me to do at 8 pm? I just pray she doesnt need it, and so far, God is with me :) The good thing was her new bedroom set (compliments of Mimi and Pa pa) was in her room and she was very excited to see it. Bad thing was if she falls off the bed she was going to rip out her IV port...humm...with some rearranging of furniture, I think we have her safe. (I hope).
This morning she awoke and wanted to go play, who wouldnt? Problem is, she still has 4 hours left to be attached to the IV bag. Movies! Lots and lots of movies and coloring in her highchair. I cant wait until she can go to therapy tomorrow and work with her therapists, it will be so much fun for her to feel like normal again! She can finish her IV while sitting with them, and she wont even notice. Just to get out will be great for her.
I am off today to buy all new food with someone who knows all about the gluten free stuff. I already saw somethings like Mac and cheese for $4.55 and plain pasta for $4.00, Brings a whole new meaning to "priceless" :) Today will be a better day, I am sure of it. We are home and Ben will be back from Mimi and Papa's house and I cant wait to squeeze him! So that is what we have been through since yesterday, in case you see me looking a bit frazzled and out of it :) Today is going to be a better day, watch and see!
12/08/07
Madison came home today! It aint pretty, but we are here! The MRI came back clean on her spinal views, except for the scoliosis, and the brain views only showed the brain damage from her first year of life (lack of oxygen causing developmental delays).The next day she went to the OR for a scope and it came back that she has Celiac disease!!! Basically, she has to eat a gluten free diet, and she will be okay.
It isnt easy to find gluten free food, and it is very expensive, but we can do it! It may take a year to repair and recover and get back on track, but thats okay, we are totally committed to her getting better. Madison came home on TPN (IV nutrition) and with an g-tube and a J-tube (G goes to the stomach, the J by passes the stomach and goes into the intestine), she also has an NG tube (from her nose to her stomach) that we have to attach to suction until her belly distension goes down.
She is very high maintenance right now! Her medicines have also increased quite a bit. So anyway, I wanted to take the time to thank everyone that came to see her...you truly brightened her day! and for the gifts, meals and balloons. I also wanted to especially thank everyone that took the time to tell me about Ben! The Moms that saw him in school all reported to me how he was, and his teacher was an extra set of eyes for me, and an extra set of hugging arms, I cant tell you how happy that made me. I missed him so very much.
Although we are knee deep in medical stuff right now, I am so happy to be home and to know what is wrong with her. Madison is the first DiGeorge patient to have Celiac disease...always treading the path!
Thanks a million for all the love and prayers, the helped us so much! Lastly, you know she always has a major break through while admitted, this time she said her name!!! First time in 5 years baby!!! Yippy :)
12/06/07
Madison is in the operating room right now getting a scope to see if they can find the problem. Her MRI came back with a "normal" view of the nerves in her spine (thank God) and her brain only showed the brain damage that occured from axphixiation (sp?) early in life.
It was good that we were able to document the brain damage, but it wasnt any help for what we are dealing with now. Celiac panel is still pending...it got canceled by accident :( so we had to redo it. Yesterday her belly was the largest it has been at 60cm, she was just miserable.
They talk now about if it is just "dismotility" related to DiGeorge, than they dont see any other answer than to do a temporary sigostomy (think colonostomy). Lord knows we dont want that! Please pray that the scope shows us a problem that we can FIX.
We need answers and we need them fast. They are biopsing everything and checking the enzymes as well. Please pray for her well being today and I'll post again when we know something.
12/05/07
No time to write since I am alone with Maddy in the library and she is hooked to a million things on the pole, but I just wanted to say that nothing really has changed. The 3 hour MRI hasnt been read yet and we are still waiting and not feeling well. Write more soon!
12/02/07
Yesterday I regretablly said how well she was doing...that didnt last. She started to get sick after eating 2 teaspoons of plain rice. That made her sick for 4 hours until we were able to sedate her enough to sleep. She got sick again last night for a couple hours, then she finally slept for the night.
Today, so far, so good. She cant even take her medicine more than a teaspoon per hour or she will get sick. Crazy! The order for tomorrow is the MRI of her spine, hip region and now we added her brain as well. Just to clear everything up. The anti-anxiety meds are already making a HUGE difference! I think all you teachers and therapists will be very shocked to see the change in her.
She is so much more relaxed and her attention span is awesome! She even put togther a 60pc puzzle today with out ever complaining or getting frustrated. SHe is still funny and smiling and active, just so much better :) They have also ordered an endoscopy to see why her tummy is so reactive to the least bit of fluid.
Tomorrow will be another rough day, today atleast she has some rest. Please pray for some answers, we have to get out of here soon!
12/01/07
Yesterday was terrible, but today is finally better! She was so violently sick yesterday that although we got to MRI, they refused her for fear she would drown if she got sick while sedated. That was rescheduled for Monday. We did a visit with a psyc team and Maddy started some anti-anxiety drugs yesterday.
So far, so good...no more throwing up, no more hives! They said in all the years, they only 1 time ever prescribed drugs after meeting someone once. I guess that means I made the right choice, although it is still a hard pill to swallow, having a 4 year old on anti-anxity drugs! They did diagnose her with Anxiety and OCD based on our interview and her "playtime" with them.
Last night they started her on antibiotic as well because she ran a fever and her CRP is evelvated indicating an infection. Sadly it is a mycin drug and she will lose her hearing a bit while she is on it. Hopefully it wont be too bad. Ugh. Today she has some vistors coming and she is MORE than excited (okay, me too) to some "outside" people :) Hopefully some of these new issues will resolve themselves over the weekend so we can focus on the reason we came here :)
11/30/07
We are going to have a big day today. We already had a psyc consult to see if Maddy needs to be on a low dose anti-anxiety drug to make her life a little easier on her. I am not one to dish out drugs, but she has been getting worse and worse with even "good" anxiety that we had to do something. She has been on adavan here at the hospital and it has helped a lot.
We are going for the MRI sometime today, please pray she will be safe. She will also have a ciliac (sp?) panel done to see if she is suffering from that disease...very likely, they think. That is managed by changing what she eats...a pain in the butt, but we can do that! Little Skinny girl will also go back on TPN, thank God.
She is beyond skinny after not eating for a week. Her little arms are only 2 fingers wide. That should make her feel better too. She is still vomiting from the anxiety caused by the gas distension and probably will be for another 2 days or so, knowing her routine. We are trying to keep her as comfortable as possible, but last night was the worst. She was so angry that she was sick again, and so tired. We are really over it, as you can imagine.
I'll post again if we get test results. Pray for a "fix"!
11/29/07
What a roller coaster ride! Yesterday afternoon Madison made some great improvements. She was happy and playing and feeling a ton better while visiting with Aunt Jen and Caroline. Today she has slid down hill all day and it isnt getting better. They had her g-tube feeds on all night and she woke up with a bit of gas in her belly, by this afternoon she was so distended that she cant even sit up! We just came back from x-ray to try to find out where the gas is and why???
Her belly is enormous, truly unreal. I tried to make the effort to bring her downstairs for the Christmas tree lighting last night and she was just miserable. I tried to smooth things over while we waited, but she just wasnt having it. When I went to give her a hug I realized that her entire neck and back was covered in 2 inch hive welts. Nothing some benedryl didnt fix...but again...why???
Needless to say, we missed the tree lighting. This morning Madison was walking down the hall and her Doc was following her by coincidence. She asked me why Madison was walking "like that" and I told her she always walks like that. She asked how long she had been on her toes, I told her that we got braces to help, but about 6 months making sure she knew I was aware of the situation and had it covered.
She then looked at the other Doc and said "I think you are right, she may have a tethered cord"! Their concern is that her spine may be strangling some nerves and causing bladder/bowel/leg/spine issues. I had asked Ortho to test for that a year ago and they didnt want to make her get an MRI. I pray that she does NOT have that since it causes permentant nerve damage and requires surgery on her spine, but she does have a lot of the symptoms and DiGeorge kids are prone to it, so I am very concerned about that.
I would however, like some answers. We are tired, and poor Maddy has been through the mill. This has been the worst trip in a long time. PLEASE pray that we get some answers and that it cant be "fixed" or managed easily. She is just so miserable this afternoon. I am faithful that we will be on the road to recovery soon...positive thoughts!!
11/29/07 Second Update
Well, we have one answer anyway. We went and had the x-ray and it turns out that she has C-diff (it has a longer name I cant spell :) . What happened was that when they cleaned her out, it killed all the good bacteria and now the food was fermenting in her belly. She will be on IV medicine called Flagil for 2-3 days and then she can switch to oral meds.
In the mean time she has started to vomit again, I am sure from the pain/pressure and she is M-A-D!!! Tomorrow she is supposed to get the MRI, which is good...great even, but please pray for her. They have to sedate her so she will be still and they usually have to give her a LOT of sedation because she is so used to it. That means they have to "bag" her because she is so asleep she doesnt breathe on her own. A Mom and Dad NEVER like to see that, it is very upsetting to see.
Please pray that it will go just fine, but that we will have some answers when it is over.
11/28/07
Yesterday was nothing short of a nightmare. Madison endured WAY more than her share of trauma to her "personal space", you know what I mean, but after 5 enemas and 1 gallon (not joking) of "go-lightly" in only 24 hours, she is "cleaned out".
She had another test this morning for Hirschsprungs and I was never more proud of her. After all that she endured yesterday, being so violated, she calmed herself by doing deep breathing that we practiced before hand. She was so strong and brave and mature to understand that we were only trying to help her and that although she was in pain, and once again being violated, she needed to try to be still so we could get the test finished.
She is horse from screaming, her face is swollen from all the crying, she is breaking out in hives from stress and she has the shakes from not eating since Last Friday, but where is she now??? Playing in the playroom, watching a movie on the TV and hoping that she can go downstairs to see the lighting of the Egleston Christmas tree tonight at 6.
She is truly the bravest little girl ever, always looking past the "now" to a brighter time or day. No word on going home at all yet, or what the remedy is to our problem, but I think for now all the invasive stuff is over and we can focus on getting well.
Thank you for all the prayers, and a special thank you to The Wood Acres school, Benjamin's class and his teacher Mrs Legan for all the love and support they send us...truly the greatest place ever!
11/27/07
Madison had her first enema last night at midnight...good timing on their part, huh? She had her third at 3am and still no progress. She has been on go-lightly via g-tube for 14 hours at 150cc's per hour....and nothing. Today they are giving her 2 more enemas and then they are going to have to go in get the "problem".
Her belly is huge with distension and she is very uncomfortable (ya think???) but manages to sit up and color for a couple minutes after her medicine takes effect. We cant perform the next test for Hirschsprungs until she is clean out. Could be awhile :(
Keep praying for her please.
11/26/07
Tonight is Madison's 3rd day in the hospital. Today the medicine has finally taken hold and she felt well enough to wake up and color some...too bad for me it was 1am-7am that she felt so well, but I am not complaining. She had her barium test and it came back that they do not suspect Hirschsprungs disease.
Tonight she will have 2 milk of molasses enemas and then start a drip of something called "go lightly". From what I hear, there is nothing lightly about it and it should clean her out. That is the prep for the second test for Hirschsprungs which will be either tomorrow or Wednesday depending on how long it takes the drip to work completely.
She is NOT going to be too happy about all this and we all know how uncomfortable it is for her. PLease send good thoughts her way and say an extra prayer that she finds some sort of comfort in it all. Also pray that we find and a reason/answer/plan of action...something to help prevent this from happening to her all the time. THANK YOU!!!
Lisa
11/25/07
Madison was re-admitted to the Childrens hospital at Egleston last night for chronic vomiting. She is to undergo a battery of awful tests starting tomorrow to TRY to find the source of her problems. I feel confindent that we will leave here with some sort of insight as to what is going on and I hope that we will have a better game plan as how to keep her healthy.
She is 100% miserable, but has just been sedated so hopefully that will help. She was so violently sick last night that she was throwing up blood. PLEASE pray for her to find some sort of peace/comfort in all of this. As of now, We will be here at least until Friday.
11/21/07
I am so sorry it has been so long since I have updated! I wasn't able to get the program to upload...again :) Anyway, as usual life hasn't been dull. Madison was in the hospital for 6 days last week due to chronic gastrointestinal issues. She suffered terribly for several days and once again, we have no answer as to why.
She is due to go for some testing in the next two weeks to see if she has Hirschsprungs disease, which DiGeorge children are more likely to have than the general public. The symptoms suggest for certain that she has it, but some of the other DiGeorge kids symptoms meet the criteria and they do not have it....so we will wait and see.
I am trying some homeopathic things to see if we can make her more comfortable in the mean time. We are trying to gain back the 3lbs she lost without making her sick again. If she does in fact have Hirschsprungs she will have to undergo surgery to remove the diseased portion of the intestine. Hopefully, it wont be a lot. You know I always try to find a ray of sunshine in everything, and I did while we were there! Madison slept in a bed, not a crib, for the first time and she was able to order a tray. The tray of food was truly the highlight of her day!
Tomorrow Becca (www.beccabigsby.com) runs her first of 5 marathons for Maddy. I cant tell you how it warms my heart to see someone doing something so amazing for Madison. The commitment to this project is just huge, not only training for months, but the PR work she has done is awesome! Becca and Madison have even been featured in this months Point North magazine!!! We wish you all the luck in the world Becca, stay safe and have fun!!!!
10/02/07
Madison did indeed go to cardiology yesterday and we were so HAPPY to hear that her heart is better than ever! She had no germs on it (bacterial endocarditis) and her pump action was awesome. I couldnt believe my eyes watching the ECHO show the distinction between blue and red blood. That new valve is working perfect! So perfect infact, that her heart has actually shrunk 1/2 inch in size!!! The heart is a muscle and it was way over used before, so now it has been able to relax a bit and shrink in size. The heart is one muscle you do not want overworked and over sized.
Because she is still symptomatic, we are running a couple of blood tests to see what is wrong. She has a blue tint around her mouth and is constantly asking to go lay down. She is constantly yawning and wanting to be held. We are looking into Thyroid, anemia and blood sugar as possible problems. She has had issues with all of those before and they are all common with the syndrome, so I wont be alarmed if anything shows up. MUCH BETTER THAN HER HEART! We can deal with all the other stuff. Funny how when you are facing heart issues again, everything else seems so easy. Most Mom's would freak out at the thought of amemia, blood sugar or thyroid problems, but compared to what we have been through...I can tackle that with a smile on my face :)
09/30/07
Madison has not had a very good week. We have an "as soon as possible" appointment Monday with Cardiology. She has been sleeping for 12-15 hours per night, napping, and is still exhausted all day. We are carrying her almost everywhere and she cant complete an hour of therapy or homeschool without constantly yawning or laying down through it. Normally we have to drag her out of the therapy pool kicking and screaming and now she cant swim for more than 20 minutes. All she talks about is "bed time" and "sleepy". Her pulse oxygen at night has been suffering and we have reason to believe that she is very possibly in congestive heart failure once again. For months before her last open-heart surgery in December, her pulmonary artery was falling down...then all of a sudden her pulmonary valve was gone and we went in to fix that. I worry that her artery is now falling down again (it looked better post-op) and is needing repair. She seems oxygen deprived if I have ever seen it. We will see what happens on Monday I guess. I can hardly say I am prepared for another surgery not even being a year out from the other. She should be feeling the best ever since the new IV infusions are going so well for her, and that is just not the case.
She was able to get molded for her new leg braces this week and I was SO proud of her! Incase you havent casted a small child...THEY HATE IT! Instead of restraning her, like we usually do, I just sat her on the table and told her they were going to make her pretty white legs and then take them off. She was totally cool with that and just rolled with it! She even kinda liked it. With that in mind, when her infusion came due this weekend, I sat her in a chair and didnt restrain her then either, she knew she had to hold still and she wasnt already fighting someone off her, so she pretty much sat there! She did fantastic and I feel like we have really turned a corner with her knowing what needed to be done and what we needed to have happen to make it go quick. SOOOOO proud of my big girl!
Please pray for her on Monday.
09/18/07
It seems so much has happened since last week! Maddy had her second infusion at the hospital and it went better than the first! She had less fever, for fewer days and her tummy wasnt near as sore. I still havent had to inject her myself, so that is a relief too. I plan on checking my coverage to see if a nurse can come out to do it..I have some serious issues with doing it myself. I am comfortable with the "ability" part, but worry that Maddy isnt going to trust me anymore. I have always been the one to protect her, not to hurt her. I cant imagine how she would feel wondering everyday if this is the day I am going to poke her with the big needle. Maybe as she gets older, and gets used to it, it wont be so bad for me to do it. As of now she has to be held down by THREE adults to get it done, its no fun.
We went to Ortho last week because Madison has taken to walking on her toes ALL the time now. The took 7 x-rays and found no changes that would cause her to do it. The think it might be spacitiy (usually from Cerebal palsy, stroke, brain damage, etc), but that doesnt explain the sudden onset of two months ago. Her PT wondered if it might be metabolic, but her Doc said she would have problems in her hands too...and she doesnt. There is also the chance it might be sensory related, and thank goodness that can be "fixed" in therapy, but no telling if it is yet.In the meantime, back to leg braces. She gets casted for them next week and will wear them about 8 hours per day to keep her off her toes. Walking on her toes all day can shrink the legiments and they would have to be surically lengthened later on. I hate the braces because she cant really run in them, and has to wear shoes that are too big for her, but the alternative is much worse. It makes me very upset to think that there is a very real possiblity that the best she will ever walk has already come and gone.
Two days later we are back at the hospital for X-ray- abdomial views. Her GI track has quit on us again and everything is "stuck" for lack of a better word. We are pushing and pulling with medicine and homeopathic methods trying to get the thing up and going again, but no luck yet. We are stuck here at home for day 4 now. The good news is...Maddy is now in a big girl bed! We took down her crib today, and moved a spare bed into her room. She was finally able to climb out of the crib and we were worried that she might bungee jump (as Dan put it) while hooked up to her feeding pump at night. In a big bed, if she trys to get it out, at worst it will pull and she will stop and call me. I am off to go buy rails for the sides so she doesnt roll of in her sleep. Hopefully this will work out for her! I told you we have had a lot in the past week!
09/07/07
Today Madison had her final attempt at her Immunoglobin infusion and...It WORKED!!! It was very, very stressful to be "mom" trying to hold her, comfort her and support her and at the same time "learn" what my new duty was going to be. I am really nervous about injecting her with that needle, I am sure you understand all that comes with that! I have my "choice" of giving it in her tummy, flank, or upper leg, today she got it in her belly. The side effects, if any, come on about 24-48 hours after the injection, and she already has a fever. Hopefully that will be the worst of it, but if not, at least we know that with each injection the side effects are supposed to get better, not worse like before. I am taking her back to the hospital next Friday for another injection and lesson and then I am on my own here at home. She will still have to have her Port accessed once a month to flush it, which stinks because now we aren't even using it for the IVIG. It is there if she gets sick, and that is good, but it can also become infected and make her very sick...I cant worry about the "what if's" or I'll drive myself crazy.
On the bright side, when it was all over today, Madison did ballet in the hallway for all her Doctors and nurses...there were a lot of eyes welling up with joy. She was very forgiving with the pain she had to go through and even said "see you next week" when she left. At 4 years old, she knows it is for her own good and holds no grudges. Every day, is a lesson.
08/20/07
Thank you for being patient while our site was down!!! Thank you Chris for helping us get it back up :) You are awesome. Since I last wrote Madison has had yet another operation. Her Port had a huge blood clot and needed to be replaced. It was done last week and went without any problems. It was removed and they were able to replace it in the exact same spot using the exact same incision...thank God for that. It was really difficult this time because she "knew" what was going on, but couldnt really understand that her Port was being replaced. They were able to drug her before we fully disclosed what was to take place, so it worked out well this time. I worry next time it wont be so easy and we are going to have a harder time dragging her in there.
She went back the next day to try the IVIG once again. She had a reaction to the infusion after recieving less than one teaspoon of the blood product. Lucky we were there! They gave her a bunch of meds to counter the reaction and we went back home. We are now looking into her receiving a subquantious injection here at home 1x per week. Less dose, under the skin, not in the bloodstream, and we can inject it here at home. It is given with a little machine with a small needle we will put into her leg or belly, much like the diabetics wear. What is one more procedure to learn, right???
Madison is two weeks into her Intensive Therapy Program and doing well. She is having some sort of autoimmune issues where she is limping a lot, but we are pressing on, per her request, and making great headway already. She is now answering "wh" questions and says "Okay" when you tell her something. She is still very hard to understand, but speaking...communicating...much, much more. I know that she feels better expressing her thoughts, that had to be really hard for her not to be able to do. They are also working very hard on her balance and vision.
Lastly....we have had a HUGE offer in the Marathon Miles for Madison program! Becca Bigsby has offered to run 5 FULL MARATHONS in 5 MONTHS to help raise money for Madison!!! That is 131 miles, can you imagine? Thankfully we have already had some donations made and I think it is really pumping Becca up to see all the support she has. Check out her Marathon blog at www.beccabigsby.com . We have been slammed here lately with therapy bills anywhere from $475.00-$3,000.00 each. Now while she is feeling well we are pushing for her to make some huge strides. She will be hospital-home bound again this year for school because she cant do the IVIG, so that too will allow for more therapy time. Gotta get it while the getting is good!
Again, thank you for checking back with us. We will be changing the site a bit here soon, so check back soon for new updates and pictures!
06/04/07
Our trip to Island Dolphin Care was AMAZING!!! Madison had so much success with her attempting to talk and she got such a great work out! I could never put into words the fantastic experience we had there. The staff was warm, welcoming, prepared for her. They treated her like she was just a regular kid, no fear of her what so ever...which we almost always run into :)
The facility was beyond words, the gains she made in her confidence, social skills, and endurance were awesome. Let alone...the fun family time we had! Lord, we havent had a positive experience like that in 5 years!!! There wasnt one trauma, one emergency, one problem at all. She was 100% healthy and we were truly relaxed for the first time in years. It truly lifted us up enough to carry on for another 5 years :) The sea air, the beach, the fun, the nice meals...ahhhh, it was all just perfect, truly perfect. Of course now we are back to the usual...Monday Speech and eating therapy, then off to get her port accessed for flushing. That is so very painful for her.
PLEASE check out www.islanddolphincare.org to help support this not for profit organization that helped Madison so much. In Madison's weakest hours, I promised her a life worth living, if she could just survive long enough to live it. They helped make that promise come true. We would be so thankful for any donation to IDC in Madison's honor.
5/15/07 Latest Publication! "Saving little Hearts.com"
Published Tuesday, May 08, 2007
I think most all of ours stories sound the same after a while with numerous surgeries (Madison’s first was Tetrology of Fallot and later a valve replacement) and numerous days in the hospital (ours have been countless), but we hardly ever talk about what CHD has meant to us. The terms get thrown around and we all shake ours heads in agreeance about repairs and prognosis, but there is more, isn’t there?
I know for us CHD has changed our every single day from her date of birth on. We thought our world had ended with the diagnosis…we had entered some unchartered waters and had no idea what to expect or who to talk to. Didn’t it truly feel as if you were the first to ever receive such news? “What to do” certainly wasn’t in my baby book! Four years later, 2 open hearts, endless admissions, countless medicines, I have finally changed my mind. I came across a saying that says, “If you cant change it, change the way you think about it”. CHD has become a blessing to us. We thank God for every single day, we know what to stress out about (high blood pressures, unexplained fevers, swelling) and what NOT to stress out about (traffic, mail running late, a flat tire). We had been to the depths of despair, in 3 years planning her funeral twice. Now we are living life…I mean REALLY living life! We lie in the grass, play in the rain, roll down the windows and sing to the radio. Because of Madison’s suffering we now take every moment remembering, this moment…right now in time…almost didn’t happen. We almost weren’t here; we almost weren’t able to do this with her. I went from being the “perfect” Mom with my Son to now sometimes encouraging a little bad behavior like, eating dessert before dinner and staying up too late with the kids to watch a special movie. CHD and Madison made me realize we get one chance, we have to take it for all its worth. I’ve changed the way I think about it…I took a bleak prognosis and decided it would be a constant reminder that the clock is ticking for all of us, and we are going to fill every hour, minute and second with love, laughter and LIFE!
Lisa
5/11/07
It has been about a month since our last update...so here we go! Madison has been on antibiotics since we stopped the IVIG, with ear and sinus infections. I know it sounds like no big deal, but we actually had to call an ambulance a couple years ago and almost lost her because of a sinus infection. Her head becomes septic with infection because the drugs do not work and she can become very ill. Anyway, she is very horse but is otherwise handling pretty well so far. ENT said they wont put her ear tubes back in now because he'd like her to be 6 months post-op before he takes her to the OR, and he'd like for her to recover from this and see how she does...hummm...
We also saw GI this week and guess what??? She is 30.6lbs!!!!! She was 28lb for more than 1 year, we are so thrilled to have her FINALLY gain some weight! She is less than 5% on the growth chart, but it is the first time she has ever even been ON the chart! GI Doc was thrilled with how well she is right now.
Two more weeks until she goes to Key Largo for the Dolphin therapy scholarship program. We are SOOOO excited and very nervous. She'll have a great time, but it is a very long drive and very far from home. Benjamin is really looking forward to the whole thing as well. It is too hot for her to be outside after 11am so while she and I hang out indoors the boys can go play. It will be so nice to just sit and enjoy our time together as a family. I LOVE IT :)
4/17/07
We got some really good news yesterday! Madison was accepted to a very elite rehab group at Children's Therapy Works in Alpharetta. In August she will attend what they call an "Intensive Program" for 3 straight weeks. For 3 hours per day...everyday...she will work with a PT, OT, ST and a functional therapist to try to improve her speech and oral motor skills. This is very intensive and a lot of hard work for her, but she was picked because of her severe speech issues and her potential for successful rehab. I don't expect her to come out in 3 weeks talking in full sentences, but we are really hoping to gain some ground in her ability to be understood. She is only understood 10% of the time...if that really, and it has been heartbreaking here lately because she is at the age where kids her age are asking me why she talks like a baby. She is starting to show signs of withdraw because she is ashamed or embarrassed that she cant talk. I never want her to feel that way. This is really our last hope in making some sort of large improvement. She has had oral surgery, got hearing aids, learned sign language, has a communication board, been doing speech therapy since she was 3 months old...there just isn't anything else left. She starts school in the fall and we have to make some really important decisions if she isn't going to be able to be understood. This is really the final straw before we just have to "wait it out" and hope.
To give you sort of a base line of where Madison's skills are right now...she cant smile, pout or make a silly face when asked to. She can only say about 5 words perfect. She cant drink liquids out of an open cup and she has no rotary chew. Stacked against her is the fact the anatomically she is a mess! She has a paralyzed vocal fold, cleft palate, Velo-pharengyl incompetence, weakened left side from a stroke, hearing impairment, severe Apraxia, and weak lungs to help push her voice. You watch though...this kids gonna talk :)
4/2/07
Madison had her last follow up with cardiology last week. Now we are just back to regular 4 month check ups! Her visit went great! Her EKG looked normal for her so we didn't even have to do an ECHO. I was happy about that. We were able to take her off of her Lasix which is really good because that drug gives her kidney stones. The Cardiologist said that IF her valve doesnt calcify, and she needs a new one simply because she out grows it, they MAY be able to do it in the cath lab! That means no more open-heart surgery!!!! They are already doing it in Europe on very dire kids that weigh over 80lbs, so in 10 years, who knows??? Maybe she can have it done here and it will be no big deal...that would be amazing!!!
Last week she also had a horrible reaction to IVIG and we had to stop the infusion after only 45 minutes and throw it out. We are done now for sure, no more IVIG because the next reaction could be life threatening. We can switch brands again, but there is only one more left and we need to save it for a life saving situation, not to be used as a preventative measure. I am not sure what this means for her. I do know that while she was on it, she was the healthiest she has ever been, with very limited hospital stays. I can only hope and pray that with her being older, and her heart being fixed again that she will be able to hold her own. I guess I will tighten the reigns a bit until I see how she does without it.
She did run a 104 temp because her allergies were bothering her last week... Who the heck runs a 104 temp with allergies??? She does! The Immunologist said that although her test for autoimmune disease came back negative, she acts like she has it, so we are treating her as if she does. If she has a "reason" for her body to react, such as...allergies, very upset all day, a change in medicine, or even an exhausting day...and she runs a fever then we can treat it at home and as long as it goes down and stays down, we can stay home. Anything over 104.5 for more than 3 hours and we have to go to the ER. Atleast with this pseudo-diagnosis, they wont look at me like I am crazy in the ER when I walk in and say "She has a very high temp, but she isnt sick, just do an x-ray and labs and let us go home!"
Other than all that...things are cruising right along! She is growing like a weed, Eating REAL (toddler) FOOD all day, drinking from a sippy cup and about to go into a big-girl bed. Hard to believe we get to sit back and enjoy for awhile...(I probably shouldnt have said that :) ha ha ha
Lisa
3/14/07
Madison was given a FULL scholarship to attend Island Dolphin therapy for 1 week in Key Largo Florida! May 28th we will head down there to spend the week in a 2 bedroom condo (www.marinersclubkeylargo.com) also included in the scholarship. Madison will have therapy everyday with the dolphins in the water. On Thursday Benjamin can swim with her and on Friday we can all swim! The condo is on the water and we have the rest of the day and all night to do whatever we want around town. We are really excited about Madison (and Ben for that matter) having something so special to look forward to. I know that they will be looking through pictures and watching the video for a long time to come :)
Island Dolphin Care asked me to mention that they are a not for profit organization, and that Madison is attending this therapy because of personal donations made by friends and families of children who have been there before Madison. If you would like to make a donation in Madison's honor, no matter how small, it would be greatly appreciated!!! To do so, Please visit www.islanddolphincare.org We are so very excited and blessed to have such a HUGE thing happen. I really expect that Madison will try very hard in therapy with the reward of swimming with the dolphins :)
On another note, we are preparing to sell our home and move so that we can have more space (medical equipment take up a ton of room!) and less stairs for Madison. I had one realtor come in while a nurse and I were trying to access her port and I think we freaked her out. The next one came in and while we were talking Madison accidentally pulled her g-tube out of her belly! She was standing there screaming with blood and guts (literally) pouring out of her belly. I will be really surprised if I can sell this house without giving someone a heart attack! Geez, what a mess :) I couldn't believe that happened.
Madison starts her eye therapy tomorrow, I am really excited about that. I guess we are going to have to give up her music therapy for a while because insurance doesn't pay for either one and I cant afford both at $135.00 per hour! Hopefully we will be able to pick it up again somewhere along the line. We haven't had any tournaments in over a year and are just now starting to feel the pressure again.
Bottom line is, Madison is doing so well right now. She has so much to look forward to and is really enjoying every single day. She will take a break from homebound school this summer while we move, but will keep going to Tender Health Care for social skills and interaction.
2/28/07
Today Madison went to Immunology for a follow up appointment. We discussed FINALLY stopping the IVIG infusions!!! Looks like we will try to stop them May 1st and see how she does. In July she will get an immunization and we will see if her antibodies respond. If so, we will keep her off the IVIG through the fall and see how well she does. If her body doesn't respond or she starts with illnesses again she will go back on for another year. She may even possibly be able to go to school next fall depending in her blood work in August! She would LOVE that!
We also discussed these random fevers that she gets. I am so used to them, I don't even get upset when she has them anymore. (Even the ER is used to it by now) Every 2-4 weeks she runs a temp of 104-106...we got to the ER, get a chest x-ray to check her heart, draw labs to check for infection and it always turns up as nothing. The Immunologist thinks that this is a sign of autoimmune disease, and will draw labs for that on Friday. DiGeorge kids are more prone to autoimmune disease so I am a bit worried about it. They said the age for onset is 3-5 years old. This is something that has kind of stuck in the back of my head ever since I first heard of it...I cant explain why, I just pray to God that we miss this bullet and the fevers can be explained some other way. Her symptoms (elevated white count, high fever and low platelets) do fit the bill...but we will pray there is another reason :) I'll post again when I know more.
2/14/07
So many of you have asked for an update...thank you! We are glad to say that Madison is better than EVER! Her energy level is through the roof, she has returned to respite care during the day and she is back to all her therapies. Her GI Doc has given her his bid of approval, and we see immunology the end of this month. I am truly amazed at her cognitive gain since her surgery. I had no idea how much she was held back because of her lack of stamina. She is trying so very, very hard to learn to talk...and she really realizes now that she is "learning" and that no one understands her. She will sign so that I can get it, but still will try to produce the words. On the not so nice side of that, you can see on her face that she realizes that is nonverbal, and she is kind of embarrassed about it.
Looks like we are going to be moving soon! We have more than outgrown our current home and are looking for something more suitable in our same area. One county over has the best special ed program around, so we will be looking there for sure...Ben will stay in the same private school. Madison has several "special needs" to be met in the new home, so it may take a little longer to find the perfect one, but we are on it! Every thing is so fantastic right now, I am sure immunology will be pleased with her. Next month we see a developmental ophthalmologist because of some serious eye problems Madison has, but I feel really confident with this Doctor that we were sent to.
HAPPY VALENTINES DAY!!!
1/24/07
Dan and I were just saying last night how much Madison has improved in the past 30 days. I cant believe where she was a month ago today. Do you know that she NEVER naps now? She stays up til 8pm??? She can finish all her therapy and is ready for more? I had no idea how "sick" she was for this valve. When kids are growing and every changing it is really hard to tell where she "should" be. I had no idea all that she was missing out on, until the end. There at the end it was very obvious to us it was time, but thinking back, it really could have happened 12 months earlier by the way she was acting. THANK GOD she is feeling so well. I pray that this one holds out for several years.
I applied for Madison to go to Dolphin Therapy in the Florida Keys this summer! Check it out at www.islanddolphintherapy.org
She would do therapy 5 days a week for 1 week with the dolphins! The last day Ben can play too...it will take him that long to get used to the idea anyway:) She would LOVE it! We have sent off for scholarship info and should hear back soon. The program is $2200.00 NOT including a hotel, airfare, rent a car, gas and food. Thank you Allison for helping with the paperwork!!! Wish us luck, it would be a real positive experience for all of us.
1/19/07
This week Madison went to the Orthopedic Doctor to see about the many issues she has there. It was pretty much all good news, except for her scoliosis had gotten 3 degrees worse which brings it to about a 14 degree curve. Her said that she can finally come out of her leg braces for a while and her was happy with the way her feet have corrected themselves with the help of the braces. Her motor planning leaves much to be desired, especially when it comes to running, but all we can do is work on that with physical therapy. Next week is the GI visit :)
1/11/07
Yesterday Madison went to the Cranial Facial Center and met with several Doctors. I was concerned because I know that her palate was never fixed 100% and certainly didn't want to deal with that anytime soon. Good news is...I don't have to! He was more than pleased with what he saw and heard. Although Madison cant be understood for the most part, he no longer considers her Non-verbal, just unitelledgeable...which can be worked on! He said there was very little air escaping through her nose when she spoke, much better than he expected or even hoped for. No more palate surgery for a while :)
The dentist was also really happy with her teeth. He said it is very common for DiGeorge kids to have 10-16 teeth removed in the OR! Can you imagine??? The kids are just so sick and on so many medicines, their teeth are terrible...NOT OURS!! Maddy had a perfect check up. He said the next 6-12 months are very crucial in keeping her from getting a cavity. An infected tooth could be life threatening to her...I cant imagine that either. Everything is so extreme with her.
Sadly, Madison has started to have a LOT of anxiety. She is having terrible nightmares related to her being in the hospital...asking to come home, to make it stop, no more band aids, etc. She screams at the top of lungs for 30 minutes in a complete panic, and there isn't anything I can do, but hold her. Even during the day she sometimes is "spooked" for lack of a better word and runs into my arms like a scared animal...like something is chasing her...I cant explain it any better. She pulls my face to hers and kisses me and squeezes me as if to say "tell me is okay and do not go anywhere". Last night had to be touching her in order for her to fall asleep...that is VERY unlike her. Hopefully this will all pass soon. I am sure her head is just trying to process all that has happened...I wish I could help :(
1/5/07
HAPPY NEW YEAR!!! Madison had a great birthday celebration this week. She babbles something that we finally figured out sounds like "birthday cake" every time you ask her how old she is. She loved the birthday cake! She had an Immunoglobin infusion this week, here at home, and she did amazing. Normally she falls asleep after we access the port in her chest. You may remember it is like putting a push pin into her chest right above her heart...very traumatic for her, but this time she stayed awake the whole 4 hours! They have to give her IV benedryl so she doesn't have a reaction to the donor blood product and even that didn't make her tired...that's how well she is! I have never, in 4 years, seen her with this much energy. I am so happy that she is recovering so well. There have only been a handful of times she points to her chest and says boo-boo.
UPCOMING...Over the next 30 days we have a lot of appointments coming up. She sees the Cranial facial center next week. That includes the dentist, speech pathologist and palate surgeon all in one afternoon. DiGeorge kids, including mine, have a ton of issues with their mouth's. We know we are facing another palate surgery, hopefully it wont be soon. Also her teeth MUST stay perfect because an infected tooth can spread germs to her heart and be fatal...no stress there :)
She also has an Immunology appointment where they will recheck her T-cells and see if we are still on the right track to improving them. Orthopedics is somewhere in January as well. Time to re x-ray her back and see how many degrees her scoliosis has changed. I can tell just by looking at her back that she has had a bit of change, nothing we can do about it but wait. Another gray cloud over my head, one day it will be a very big deal, but unfortunately, there isn't anything I can do about it now. That should do it for January! I'll post again when we get results from all of our specialists. Until then, we are enjoying our time together at home!
Madison's Update Archives
2007 Updates
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