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12/29/06
Madison had her follow up appointment today with Cardiology...it went perfect! He couldn't have been more pleased with how everything went. He said her heart looked great and he couldn't believe how different it sounded. She has no more cold hands and feet, no more heavy breathing, she is talking all the time, it is truly amazing what the valve replacement did. She feels like a new kid! I bet over the next year she grows leaps and bounds in all areas. Once we get past the calories going to organ repair, I think she will be the best she has ever been. God has been so good to us and especially to her. We have so much to be thankful for.
12/24/06
Shortly after I wrote last, Madison was readmitted because her blood was septic. She was released today...Christmas Eve! She will spend her first Christmas home in 4 years!!! She went through a terrible time of it last week. She couldn't tolerate her g-tube feeds at all and had a terrible bout of vomiting, I am sure that hurt terribly. The quality of her blood was poor and she had to receive yet another blood transfusion. She did a round of IV antibiotics, started a round of another kind and then has come home on a 3rd kind. Yet somehow, her fevers remain even now. We are hoping that because her heart, lungs and blood are no longer showing infection, that she will be okay in a couple of days.
She is home, and that is what matters. I had to over hear a nurse tell a Grandpa that his Granddaughter had passed away last night, it was terrible. We have it rough, but we have her still. We are so blessed to have so many trials that we overcome with prayer. We have never lost Faith in our hearts even though our heads wonder what we are thinking :) Her stitches are out, her lines are removed, she no longer looks like the bionic woman...just Super Woman :)
Merry, Merry CHRISTmas!
12/16/06
I am so sorry I couldn't get to a computer to update about Madison's surgery! That wont happen again :) Maddy did AWESOME! She was out of the cardiac ICU in 26 hours, off the vent after only 6 hours. Part of her determination, I am sure, was that her hands had to be restrained while in the ICU...she couldn't sign! Day 2 she had a set back where she started with her cyclic vomiting. She was retching every 10 minutes for 17 hours, can you imagine the pain after having surgery and chest tubes? Eventually she even ripped open the bottom part if her incision. I had a small panic attack when her chest tube opened up accidentally. That could have been a HUGE issue, but a nurse was right there to handle the emergency. Day three, they stopped feeding her g-tube and started IV nutrition, unfortunately she came home on IV nutrition and will be on the IV's for a week here at home. That is good for her, but really, really hard on me and Dan. She actually stood up yesterday but hasn't asked to stand up again since then. Cant really say I blame her, we can work on strengthening later. She is happy, smiling and trying to talk a little bit, and thankfully her new wheelchair/stroller came in!
Her new valve should last 5-10 years, as long as there is no calcification or disease that sets in, and we should see a good change in her energy level. Anytime you add a foreign part to the body there is increased risk for things to happen, but she has surpassed so many challenges just this week, I am confident she will do just fine. Plus she has the added bonus that Benjamin has kissed every single boo-boo better :)
Thank you for all the PRAYERS, support, phone calls, emails, balloons and snacks we received. We are so lucky to have such a support system.
12/10/06
We got the call this afternoon that surgery will now be Monday 12/11/06 at 6am. Dan and I are very nervous and having a hard time with the up's and down's that all this rescheduling has caused. It is really hard to find your courage once, but then to have a set back and then to have to find it again is a lot to endure. I am already feeling drained and we haven't even started yet. The Doctor expressed some concern with the amount of scar tissue she has making it more difficult and time consuming to get into her chest. I am worried about that too. I have to remind myself that he has done this a million times before, it only isn't routine for us. I will post again tomorrow, they are very sure she will go tomorrow, they do have a bed reserved for her. Please pray every chance you get. I don't care when she gets home, as long as she does.
12/8/06
This morning we arrived at Egleston at 6am for Madison's heart surgery. 4 hours later they advised us they had no ICU beds and we were turned away. We look to be ready to try again next Wednesday the 13th. I cant begin to express the stress we were under this morning all to have it suddenly taken away, it was exhausting. We will rest this weekend and try again Wednesday.
11/29/06
We have had a great week of good news! Yesterday we found out that Bruce Springsteen was kind enough to donate another auction item! I should receive it soon and am anxious to see what it is. The last item fetched slightly over $1000.00 on the Ebay auction block, with all that we have going on this is really exciting for us.
I also received a phone call yesterday that a friend of mine was able to get Chuck E Cheese to close their doors for 2 hours for Maddy to have a 2 hour private birthday party! A crew will disinfect as best as possible before she gets there and then she, Benjamin and a handful of people will be able to have full run of the place! Madison could never do this in a million years because of the risk of germs. Remember, Madison has never been inside a McDonalds, or to a movie...there is so much she can not do, this is HUGE for her and happening just 5 days prior to her heart surgery. Thanks so much to Carol for the idea and the work to make it happen and to CHUCK E CHEESE on Roswell rd in Marietta for making a dream come true!
Aside from that, we are slowly preparing for the big day next Friday. Deciding where Dan and I will stay at night, what to pack, and making arrangements for Benjamin. I am so very happy that I have a lot to be thinking about prior to the day, because I am still physically sick thinking about it. Hopefully soon I will get to the point where God gives me the grace to go through it...not there yet :)
Lisa
Thanksgiving day!
I cant believe we are home again for Thanksgiving, we normally have terrible luck on holidays. Madison is getting ready to watch the Macy's Day Parade with Benjamin and then we will head up to Mom and Dad's for dinner. This has been a really hard time to go through this surgery, with the holidays and all. Christmas shopping is a mixed blessing, thanking God that I have 2 smart, beautiful kids to shop for, but on the other hand I worry about what Maddy will be like when we come home. I guess I have had too much exposure to kids having brain injuries during surgery, and that is a big worry of mine. I pray that Madison will come home the same kid I brought in...that's all. I did hear however that her wheelchair was approved by insurance and should be here within 30days. Not soon enough if you ask me, she is really wearing down a lot everyday. This week she went to bed at 2:30 one afternoon and stayed asleep until the following morning. Mostly she is asleep by 4 or 5pm for the night. I know that isn't good :(
December 6th is an IVIG infusion day, Dec 7th is a 6hr pre-op day and her surgery is on the 8th. Not much longer, now.
11/4/06
We got the date for Madison's second open-heart surgery, it will be December 8th, 2006 and done at Egleston hospital in Atlanta. Needless to say we are sick at the thought of having to endure all of this again, but we also realize there is no other choice. I firmly believe that it is in God's hands and that we will do what we humanly can, but leave the rest up to Him. We learned long ago that we are NOT in control and that we have to surrender, hard as it may seem. Madison is now at the age where she will meet with a childlife specialist for an hour in hopes that they can explain what is going to happen to her. I hate knowing that she is going to be scared and I cant protect her. Hopefully, like with most surgeries, you forget so much as the weeks wear on, she wont remember much.
Did you hear us on the radio??? We were on Star 94 telling our story about Miracle Madison in hopes to raise money for the hospital that helps sustain her life. I owe everything to them...from saving her life initially, to rehabilitating her every time something else goes wrong. Before rehab she couldnt even clap her hands together, now she is learning to peddle a bike and climb stairs! I thank God for them...every single one of them that work with her.
10/25/06
Madison will be admitted to Egleston for her second open heart surgery within 4-6 weeks. Yes, right around Christmas. The group of Doctors came back and agreed that it was a really good time to replace her valve. She is symptomatic to the point where I am concerned, but still healthy enough to tolerate the surgery. I cant begin to tell you the roller coaster of emotions we have been on since we have heard. I cant stop looking at Madison and praying to God that he gives her strength enough to endure this. This is a very major operation, very major. We have every reason to be concerned knowing the potential problems. God willing she will come through better than we took her in. Almost daily now she is going to bed by 3-4 in the afternoon for the NIGHT! She tires so easily, and gets so blue sometimes, I know it is the right thing to do.
I was watching her outside today, she never misses a chance to live life. She was walking around picking up every leaf that looked neat, she rolled down every hill of grass that looked like fun. She stopped to watch the birds fly by and just sat to feel the grass. Madison has taught me a life time of lessons, everyday is another lesson another reminder. She lives like no one I have ever met, making the best of everything and tolerating the bad knowing that soon she will be happy again. I think of all the good things she could do with her life as she gets older, I pray to God she recovers from this and gets there. I plan to do everything in my power to keep her comfortable and keep her spirits up while she is admitted. Best case scenario will be about 3 weeks of admission.
10/18/06
Madison recently had an 4D MRI of her heart to decide where she was in regards to her next open-heart surgery. I spoke with her Cardiologist today and he said that her pulmonary artery was wide open, meaning there was no discrimination between red/blue blood, it was all just swishing around in there. Her valve, what's left of it, is no longer functioning and therefore she is a candidate for valve replacement surgery. Because she is sleeping so many hours per day, and has a blue upper lip, they think it is the right thing to do. Because I am "Mom", nothing could convince me it is the right thing to do right now. I just cant get "there" yet, call it protective denial, whatever...I just am going to have to have someone tell me to do it! Not ask me if I want to do it, nobody should have to make that choice about their child. Based on that, cardiology is going to present her case Monday night to the board of cardiologist, cath-lab people and cardio-thorasic surgeons. Together they will decide what is the right thing to do. There is a chance it could still come out 50/50 and that would put the ball back in my court. I pray God really makes this obvious to us as to which way to go. If we wait too long she could be too sick and it could be too late, on the flip side, we don't want to rush it because she needs time to grow. I'll know more Tuesday.
Today we also ordered her wheel/chair stroller. Because she wont walk when she is tired, or if there are too many people around, or if it is windy...whatever her reason maybe, we ordered it so everyone will be more comfortable. It is soooo much easier to push and to attach her fluids or feeds. She sits more upright, has a table top, and is 100% safer. She also feels more grown up and not like a baby in a stroller. She got to pick her color and I think she is really excited about it. It should be here in 60-90 days depending on what insurance covers and what we have to cover, you gotta love insurance :)
Please, especially now, keep our family in your prayers.
9/23/06
We had a visit with Cardiology this week due to some symptoms I thought Madison was having. She has been very tired and having a lot of blue spells. Sure enough things are a little worse than they were 6 months ago, as I expected. The Doctor suggested that we change her meds and get an MRI of her heart to see what we are dealing with. Today was the first day we changed her meds and she was miserable all day. Her blood pressure was pretty high and she was beyond fussy. The MRI will be scheduled very soon and should give us a better indication if it is getting close to the time to repair her pulmonary valve. We are getting closer to the point I have always dreaded, watching her slow down and start to fail as her heart tires more easily. There is a fine line in repairing her heart as a healthy child and waiting too long and her being to sick to repair it. She will have to be followed closely.
In the mean time, we have an appointment at Scottish Rite hospital with the wheelchair clinic to order her a convaid stroller, as they are called, for when she is too tired to walk. Hopefully the MRI will show we have some more time for her to grow and get stronger, but in the mean time we will have a way for her to continue to get out and about without tiring out so easily.
8/31/06
We have had such a nice quiet summer, Madison has grown so much...not physically, but into a real little person. She is so expressive and has so many likes, and dislikes, she knows so many things and loves to share her day to everyone she meets. She is still using sign language although she finally has about 5 spoken words that everyone can understand and about 10 more that only people close to her can understand, that is HUGE!
This week we took her to the ENT and found that she had a terrible ear infection. She never complained one time about it...not painful enough on her scale I guess, but it was bad enough that they had to stick suction into her ear and vacuum the fluid out. After, she said it felt better. We also saw Immunology and based on their assessment we are going to keep her out of school for another year. Best hope is that she will go to elementary school in the fall and spring and home-bound all winter when she is older. For now she will remain 100% homebound for school. We are also going to run rheumatoid levels on her to see if she is at risk for arthritis. DiGeorge kids are prone to it at about age 3-5. We will also keep her on IVIG infusions for at least another year...Hey, it works!
All the Doctors were very impressed with her cognitive growth and agree that this is Madisons time to catch up on life. She is so enjoying every single day that she is healthy and is learning leaps and bounds. She knows her ABC's, can count to 10 and is learning to read sight words. Her aqua therapist even has her jumping into the deep and of the pool with her head going completely under! Madison has no limits to her capabilities. She is awesome :)
Next month is Cardiology and the eye doctor, stay tuned...
7/12/06
I found out today that another DiGeorge child in Florida passed away yesterday. We knew him and his Mom through our very tight knit online support group. He passed away after a very brave fight post heart surgery. It is always very hard to hear of another death knowing that Madison is soon going to have to go to that same battle. I know the desperation that the parents feel as they watch the child fight for life, it is just too much to bear. On the other hand, hearing about it, he was 3 1/2 years old as well, makes me hold my kids a little tighter tonight and reminds me to give extra kisses. It also renews my strength in making sure that Madison gets the best care possible. I know that when God decides time is up, for any of us, there is no fight, it will be over regardless. I have to have the confidence however, to know that I did everything the best I possibly could.
Another parent who lost a DiGeorge child told me that as hard as these kids fight to live, when the time is up, they fight to die as well. It is almost like they know when time is up and it is time to get your wings. I hate to have the cloud over my head all the time, worrying about her next surgery. The stress could about kill me before she even gets to the OR. I have to keep praying for God to remind me that he is control and I am just along for the ride, good, bad or ugly.
6/29/06
Madison went the her first dental appointment two days ago. It went so well. I hear of so many DiGeorge Mom's saying that these kids have teeth removed at 3 years old because of being so ill their teeth are in terrible shape. I was also worried about bacterial endocarditis getting into her heart repair...that can be fatal! We took antibiotics before and after and everything went so smooth! He said her teeth looked amazing and that although she would need a palate expander and braces later, for now they were great! I am not sure if we can do a palate expander after having a sub-cleft palate, but we will get to that later. She would also be at risk with braces because they cut your mouth...so we will see about that too.
Today she had another booth test and new hearing aids made. Hearing is same as always, although she said there was a perforation (sp?) where the tube was and she needs to be seen by ENT right away. Needless to say, they haven't called back yet :) Hopefully it will be no big deal. Turns out, both tubes are already out after being put in January! The speech pathologist saw her as well and was blown away that she was talking...remember he said 7 years old??? He said her tongue was showing sings of a previous stroke (unconfirmed, but not surprising in he least) because it works so much better on the right side. No big deal as long as the sound is okay. They also want her to continue her using a bottle to avoid nasal regurgitation when drinking for another 6 months. By then she will be 4 years old still using a bottle! What can you do though? We didn't even start using one till she was 2 years old :) He is waiting for her to have enough cognitive understanding of what to do with the liquid before we push her to start a sippy cup. We are delayed, but we are getting there!!!
6/20/06
Well, we finally have the website up and running again...and we have so much to share!!! Thank you first to Chris and Carol for helping me get it up and running again :)
Our vacation was fantastic! Can you believe we made it there and back??? She was diagnosed with strep throat just hours before we left, but thanks to the pediatrician and pharmacy we were on the road in just 3 hours. Madison and Benjamin had the time of their lives. They swam in the pool and ocean and saw dolphins and just really lived it up the whole time we were there. There was not anything we didn't do! Dan and I were able to go out alone every night while Mom and Dad sat for the kids. It was so amazing to be alone and not worry, the kids were so tired every night they were a breeze to sit for :) We took Madison to lunch one day and she actually ate a hot dog! We cut it into tiny little pieces and after about 2 hours, it was gone! She only wanted it because Ben kept ordering hotdogs, hey...whatever it takes! Also, Dan's art work was accepted into a gallery while we were there!!! That was just a HUGE moment for us. We felt blessed over and over all week long. The trip was really just the best time I ever remember having.
Since then, we have had another IVIG infusion and a g-tube button change out. Soon she will be going for another hearing test and her first teeth cleaning. She also spent one night in the ER because her intestines seem to have come to a hault. We are still working on that everyday, hopefully when we get the right medicine she will be up and running again. So far, this summer has been the best yet. So few illnesses and she has handled everything so well. We hope and pray that our luck continues!
5/7/06
Well, now that we spent $8000.00 on a communication device for Madison she has said her first words! She can say Ma-ma, ba-ba, Da-da and Bye-bye! Although they aren't perfect, you can certainly understand what she is saying, without a doubt! I am very excited that she has finally spoken something, but I am not getting my hopes up that the dam has broken and words will just flow out now. I've talked to too many Mom's with kids with DiGeorge and they say that a few words emerge and then there seems to be another brick wall to go through. That's okay...we have a fantastic start and she is signing everything else she needs. The communication board will serve its purpose for sure. It will help her understand and express sentence structure and to communicate her needs to people who do not know ASL. Last week she scored the "expressive verbal language" score of a 14-16 month old! We had been stuck at 6 month age level for 3 years, so this is great news :)
I did forget to mention the conference we went to earlier this month. I gotta tell you, it wasn't pretty. There are a lot of things in the teen years that aren't going to be nice. When kids are little people tend to admire them more then when hey are teens or young adults. Madison is going to have a very hard road ahead of her with the aggressive scoliosis, and possibilities of such things as crippling arthritis and psychosis. It was very hard to hear of such terrible things, but the stats are there in black and white and it is better to be prepared and get early intervention for such things. I only pray that Maddy has the same support later that she has now, I know it will carry her though anything.
We are taking our first vacation in 4 years at the end of May. Madison has never been further than Atlanta, and poor Ben hasn't been to the beach since before she was born. I feel pretty good about it since I have instant contact with her doctors via email and cell phones. They also promised to get her back to Atlanta if the crap really hits the fan! It is more mentally challenging to actually get her and all her stuff to Florida! I have been keeping a list of all the stuff I have to remember to bring incase of problems. Even without problems there is soooo much stuff! You cant buy this stuff either, so I better get it down pat :) Hopefully her health will hold out and we will be on our way. She will get to go to the pool in the am and pm, but will spend most of the day shopping or in the condo since she cant take the heat. I want to take her to the beach at least once, but we are looking for Maddy-perfect weather! No wind, little sun, not too hot, not to cold. Wish us luck!
4/28/06
Maddy never really recovered from Easter and was admitted later that week with a 104.4 temp and no voice. Somehow she had managed to catch croup. After 2 days of IV antibiotics, just until her cultures came back, and a dose of IVIG she was released to finish recovering at home. She is just going to have to lay low this week and try to get her body strong again. I am sure that just being home this long has been tiring her body out. This past dose of IVIG was very, very hard. She has muscle spasms so bad from low calcium that she was vibrating and then convulsing. It was terrible to have to watch, I cant imagine how uncomfortable she was, it was just awful. Starting next month, we are going to do 1/2 doses 2 days in a row to try to help her body deal with it. It was just such a bad time for her, I just prayed and prayed the whole time for God to make it stop...and soon it did and then I thanked God over and over. Again, the word terrible just doesnt even cover it.
On a better note, the constant in and out of the nurses has now gotten Madison to say bye-bye!!!! It is so funny because she sounds like she is from the old south when she says it...ba-baaaaaaaaa! Heck, I'll take it. She also calls everyone older than her Ma-maaaa, there she has a little bit of a french accent :) I have heard from oher Mom's with kids that have the syndrome that they are very good with "b,p and M" sounds and then the brick wall again. When you think about it B and P are plosive sounds either with or without your voice on so they are really one in the same, and M doesnt take much...just turn on your voice and close your lips. I can see why those would be first...we will see what happens next!
4/17/06
Maddy was home with the family for Easter and it was fantastic! She had such a great day with her family it was so amazing. She looked so beautiful in her dress and Ben got to enjoy the day with ALL his relatives :) in one place! Madison had to take a recovery day today after having so much fun, but you know, its like I said from day one, She has to have a life worth living. These awesome days like Easter fuel her fight for life. When she is sick she can remember the great days and know that there are more to come when she gets better.
4/7/06
What a week! Madison took a rather bad spill into a door frame on Wednesday and cracked the bone that surrounds her eye. Needless to say she has the worst black and blue eye! Two nights later she fell face first onto the feet of the IV pole and busted lip. Now she has a black eye and a fat lip. When her mouth was bleeding Dan and I about lost it, she just looked horrible. She is none the worse and is back to her self! We did take her right away to the ER to make sure that she was really okay, and she was. I was more angry at the fact that it was low vision that caused her to fall! We have gone ahead and ordered her a helmet, but I dont think that protects anything more than her skull, we will see how it works out for her.
She went to immunology and GI this week. They did decide to increase her dose of IVIG in hopes to keep the infections at bay. Seemed like the last week, we were always on the fence of an infection. Hopefully this will help. We decided to keep up the treatments until at least next summer and then take a break and see what happens.
GI was thrilled to pieces to see how well she has been the past couple of months, it really has been great. He never gets to see her so happy and normal. I could tell it really made his day to see her doing so fantastic. (Aside from the black eye and busted lip :)
3/29/06
Still home! We had an IVIG infusion today which went well. She has been having reactions these past couple of times with back and leg cramping, but we slow the rate down and she does better. She looks like a caterpillar while she is sleeping, inching and inching all over the mat trying to make the back pain go away. She has another week of oral antibiotics to try and clear the ever persistent infection in her head. Dan and I are doing better with the whole idea of another open heart surgery. It isn't like I didn't know it was coming, but somehow the confirmation from the cardiologist still sent me reeling. I almost have to separate myself from the whole thing because I HAVE to do it for her and there isn't a thing I can do about it. I am hoping that by then we can do something to help better prepare us for the final count down of days. I don't want to watch her health go south and know for certain it is her heart failing, it makes me sick to think about. Still working on enjoying everyday and pushing the ugly back, but I know with that I am setting myself up for shock again when the time comes. What am I to do? Nobody knows, that's for sure. Dan and I will navigate this course like we have everything else and wonder at the end how we made it through, and I am sure we will have the same answer...by the grace of God :)
3/22/06
Yup, still at home! We had a close call this week with yet another sinus infection, but I think we have it under control so far here at home. She managed to pull a new trick by retching and causing her nose to bleed at the same time...Lord, I didn't know what to do first! I was shot and good for nothing the rest of that evening :) She always is eventful! Today we picked up her leg braces and new shoes. I have to say, they are very obvious, a bit Forrest Gump-ish, but I tell you what I've never seen her balance better! She wore them for 4hrs today and never fell one time, what a relief it was to see her so much more stable.
This week she will be having a visitor from the Georgia Sensory Project. It is a non-profit organization that comes to the house to help with Madison's vision therapy and to help us make the house a safer place for her to be. They have already given me some great ideas, so I am very excited at how else they can help her.
Maddy also learned to blow a whistle in music this week! Now, you may think big-deal, right??? Well, this means that Maddy can blow out her candles next year on her birthday, she can blow whistles, bubbles and best of all KISSES! We are so proud, we have worked on this for years...YEARS I tell ya! Cant wait to see what is next :)
3/10/06
Madison had her appointment with cardiology today. He was very, very pleased with how she looked and her energy. He also thought that her artery stenosis was minimal, which is really great. He then said we are looking at a valve replacement within the next couple (1 to 2) years. I know that seems like a long way off, but you have to remember we are still recovering from the first traumatic experience and certainly aren't up for another. We thought that we were looking at a balloon or a stint in the cath lab, but now are facing another open-heart surgery. The doc was hesitant in doing an MRI because he said that she wasn't at all symptomatic of "needing" the new valve anytime now. He said that the ECHO numbers indicated it might be time, but he said that he wouldn't do anything about it now because of how she looked. When she is symptomatic he will do the MRI and then proceed with the operation. The valve will either be a pig or mechanical device placed inside her heart. She will have to take a new medicine post-op and possibly for life to avoid clotting. The symptoms that she will have will be difficulty breathing, very tired, big change in her ability to play. The fact that she has grown so much lately has played a part in her outgrowing the valve she has now. She was 29lbs today!!!! Time flies by and I am truly sick at the thought of going through this again any time in my life time, let alone a couple years. Sometimes I think we just cant catch a break, but then I remember that today Maddy played all day w/ her Uncle and his friends and then all afternoon on the playground in the backyard. She is enjoying every single day 100%, so out of respect to her, I should too. I will try so hard not to worry about it until I have to and just enjoy every single minute that God gave me with both Benjamin and Madison.
3/8/06
Please keep Maddy in your prayers as she goes to Cardiology on Friday. She has been having some issues with her hands turning purple and becoming very cold. Hopefully it is nothing...keep praying none the less :)
3/2/06
On Wednesday Madison had an appointment with a vision therapist. We have been to 2 other eye Doctors but have had no luck with anyone who understands her syndrome. THIS lady did! After playing with Madison for about an hour she came back to tell me what she had discovered. Mind you, I was already aware that she had issues with her eyes, I just didn't know what was wrong exactly. She reported that Madison is near-sighted in one eye and far-sighted in the other. She has no peripheral vision in her left eye at all and no depth perception. She also said that she is has symptoms of another disorder because she watches TV with her head tilted to the right all the time. She noted that she has double vision when her brain allows her to use both eyes, but for the most part her brain turns off the left eye to limit the double vision. She said that Madison needs glasses immediately and that she needs transitional lenses because she has photo-sensitivity, hence the squinting outside. We see the pediatric-neurology ophthalmologist in 2 weeks so I am very excited I can go in with all my ducks in a row and get Maddy the help she needs.
Also, on Monday she had her first home IVIG infusion and it was wonderful!!! She had a small reaction that the nurse was totally able to handle and I think we were all much, much more comfortable :) The past 2 days I have been able to go to work and just enjoy and relax. I needed that break so very much...I think Maddy has appreciated the break from me too!
2/25/06
Yesterday Dan, Madison and I went to see the Cranial Facial Team @ Scottish Rite. We first spoke with the Dentist who thought the health of her teeth looked great. He set us up with a cleaning in 3 months and then every 3 months there after. No big deal, right? Well, then he proceeded to tell me that the same "bug" that causes strep or viral infections is the same "bug" that likes to attack cardiac repair sights! That she is 3 times more likely to have decay than regular kids because of the g-tube and reflux and that if I notice anything at all in her mouth to get help immediately. The germ in her mouth can travel to her heart and well...make her very, very sick. Okay...something else to worry about. No normal cavities here!
We then saw the palate surgeon who agreed that we certainly need another palate operation, but he didn't really feel like there was enough tissue to pull from and that if he closed her throat any further she might have a hard time breathing. He said that with the incompetence in the back of her throat, she would have to remain on the bottle and not have any sippy or regular cups. Another lesson here....Not to judge a Mom when you see a 3 year old with a bottle, I do get some looks sometimes or get "offered" a cup as they tell Maddy to use a "big girl cup". Here is where I have to breathe before I speak :)
The speech pathologist was next in line, he came in and assessed Maddy as best he could...by this time she was over it. He was the second Doctor to independently tell me that Maddy wouldn't talk until she was 7 or 8. I guess I have to file that "realistic" thought in the back of my head and try to stay "optimistic" that it will be sooner. At least we have her signing for now. Together the speech pathologist and the palate surgeon will do more testing, probably a scope, to see if there is anything that they can surgically do to make the nasal reflux better. On Monday, Maddy will receive her first IVIG infusion at home. I am a bit nervous because there is always a risk for a reaction, but God willing it will be smooth and will allow us 1 less hospital trip!
2/22/06
Oh, what a day!!! We started out at the Orthopedic where sadly I was informed that I was correct about Madison's chest growing crooked. Her scoliosis has indeed gotten worse and has even added yet another curve. She is now at a 14.5 degree curve and we were told that she will have to have surgery at 40 degrees. A back brace will not help with this kind of scoliosis and physical therapy will only help to slightly slow it down. It will not stop on its own. I was at least reassured that her chest is growing bigger on her left side so it will not squeeze her heart. We were also told to think about her getting a soft helmet to prevent a head injury as her falls have increased dramatically. We are still considering that.
Then we were off to The Atlanta Speech School in Atlanta for her hearing evaluation. We took a tour and saw that even the most profoundly deaf kids SPEAK! No one used sign, and no one was even hard to understand. One girl with a recently placed cochlear implant sang like she was ready for American Idol! Truly, amazing what they can teach these kids. We knew right off the bat that Madison wouldn't be able to go because she had a g-tube, but it was great to see what could possibly be, one day.
We did her hearing eval and they reported that with "tone" sounds she was "severe to profound" in her one ear and only mild in the other. With "speech" sounds she was found to have mild in one ear and moderate in the other. Her hearing aids will have to be adjusted on to compensate the higher frequency sounds. On the way home, Mom and I were talking about her going there one day and that if God wants her to be there, he will make it happen. We were sad that if she couldn't go she truly would be robbed of a chance of a decent chance to talk. No sense in fighting it because they do not take g-tube kids . Then it happened...my phone rang and it was the therapist saying that they had an opening in a 2 day per week preschool and that we could fill out an application to be considered on a trial basis!!!!!! I cried and cried and cried. I was so broken hearted watching her tour the school, sitting in the chairs, interacting with the other kids and ready to learn thinking about how no one wants to take responsibility for this girl who has so much potential. Here they were willing to take a chance! Even on a trial basis, I am ready to leap into it. I have to stay at the school for the 6 hours per week because of the g-tube situation, and I've heard that some parents even work there to help pay off the tuition ($7000.00a year for 6/hr per week...financial aid, here we come), which I am will to do as well, heck, I am already there! PLEASE PLEASE pray that this works out for her. It is truly one of the best opportunities she will probably ever have. You can check out the "Hamm center @ the Atlanta Speech School" on the web page www.theatlantaspeechschool.org
Also remember us on Friday when we go to the cranial facial center to discuss another palate operation.
2/18/06
We have been home for 2 weeks now! Madison is doing awesome. The IV antibiotics, which are not hard but they are very tiresome, have really helped her. She went from taking only 3 cans of formula a day to taking 5 without any problems at all! She hasn't retched or gotten sick one bit. Her cheeks are so full and she even feels heavier, I cant wait to see what she weighs. We will be done with the IV drugs Monday night, thank God. It has been exhausting getting up all night to hook them up. We have been pretty resourceful by putting the IV ball into her pocket so she can still get around. It works better-and safer-to do will she is contained so we try to schedule nap time at the same time. The IV drugs are in a ball like a downy fabric softener ball and we hook it up into her port and off she goes! Her body just pulls the medicine in over an hour, no pump needed at all.
This week we went to talk to the rehab center about her speaking board. It was the craziest thing I've ever seen. They symbols for the words were crazy...ex, a picture of a train stood for the word "can", as in "I think I can, I think I can". Like she would ever get that! It was way to complex for her (me too!). I have been looking for a speaking board that has sign language symbols and cant find one. Next week I am going to talk to a couple people about having one made, who knows, I may be onto something!
Next week we get her legs casted for her new leg braces...she loves that...UGH! Then we also see the cranial facial team, speech pathologist and special needs dentist all in one day. I am sure we will be coming home only to prepare for her next palate surgery. I only pray to God that it goes better than last time, it was really horrible. She also had her first music therapy this week and she LOVED it! She was trying so hard to sing along, just to get some sound out of her brought tears to my eyes. She tries so hard, she looks so confused as to why it doesn't work for her. Hopefully that will get better post-op.
2/7/06
Madison has been admitted since 1/30/06 with fever and sinus infection. Finally the Doctors were fantastic about getting to the bottom of the problem and I really feel confident that we made progress. After another swallow study it was determined that Madison was refluxing liquid up her nose and into her sinus cavity, thus causing infection. Simple solution...no more open cups or straws, bottles and sippy cups only. She also came home on IV antibiotics that will run a course of 2 weeks minimum, but possibly as long as 6 weeks to make sure the infection is cleared once and for all. Her palate allowing the liquid to come back into her nose means that the palate surgery she had last year was not 100% successful and will need to be redone. Right now a Doctor in New York and 2 of my surgeons here are discussing the best path to go down. Her anatomy in the back of the throat is a real mess and we want the best result without messing anything else up, like her vocal cords. It has been a tiring admission we are very glad to be home, even though Dan and I are now having to play the role of nurse. Cant have it all :)
1/25/06
Madison went and saw a developmental pediatrician @ the genetics clinic today. She was a great doctor and very helpful. Her main concern was Madison's speech and her hypotonia (low muscle tone). She said that there are a percentage of these kids that are never able to be understood, but she felt like Maddy was making progress so I should be hopeful. She told us that not eating played a huge part in her lack of oral motor skills and that the hypotonia may keep her from sounding like a normal speaker. Her recommendation was a speaking board to speak for her and to use ASL sign language at home and with family. She also wrote a prescription for her to start aqua-therapy and music therapy! I didnt even know they had either one. Aqua is another form of physical therapy and music is supposed to help with language, both are covered by insurance...hey, what are 2 more appointments per week??? Her last thought was to get Madison back into leg braces (AFO's). For her safety and control of her feet and legs she wants her in braces up to her knees. I see her physical therapist tomorrow and we will talk about it then.
Lastly, we went to ENT for her post-op visit. He was pleased as anything with the work he did but when the redid her hearing test, she failed. Seems to be that her right ear has a significant loss, she hardly responded at all to the right side and really favored the left. That does explain why when she put toys to her ears, it was always the left one...she can hear better in that one. I dont know at this point if she can hear at all in the right ear. They have ordered a sedated ABR test again to check for certain what the loss is, but until then we are back in hearing aids.
Next week we have Immunology on Monday, Orthopedic on Wednesday, and GI on Friday...dont forget her 4 therapy appointments as well! I'll post again after those appointments :)
1/21/06
Madison's health has been fantastic (for her anyway!). She has been having a bad time at night as usual, but otherwise has been going to respite care during the day and doing very well. We have had a hard time this week with her new abilities and the danger she has put herself into. She has learned to work the back door and has disappeared on me twice in one day. Thank God Benjamin was out side in the back yard (yes, it is fenced) and was watching her. Could'nt have been more than 2 minutes, but I about died when I looked in the living room and she was gone. She was already outside, on the slide and hiding. When I approached her she started to shake her head "no" like she had nothing to do with it. I brought her back in and she opened the door and walked out about 3 minutes later, she was actually looking to make sure I wasnt watching her! Although this shows her cognitive level is typical 3 year old, she really has no idea of the danger she puts herself into. We are checking into the Sheriffs department new Project Lifesaver. (projectlifesaver.org) it is a bracelet that she would wear to have GPS locate her anytime she wanders off. I understand that this of course dosent keep her from wandering...thats our job, but the fear of her getting out is unreal. We have implemented everything we can think of in the house and she still manages to get out. I cant exactly bar the door shut because Ben needs to get back inside after playing outside. She is constantly trying to make a run for it and has to be watched like a hawk. The stress is unbelievable when home alone with her. She certainly meets the criteria for the bracelet, wanderer, non-verbal, no understanding of what she is doing, etc, hopefully they already have it in our county and I wont have to fight for it on my own...but trust me-if I have to, I will!
1/13/06
Madison is home! She has recovered quickly and is back to her typical 3 year old self :) She has not told me one time that she has a boo-boo in her head since surgery. Sad to think that even the day after having holes drilled into her sinus cavity she felt better than before she went in. She is one tough cookie! She is no longer holding things up to her ear, which makes me think that the tube made her hearing a lot better again. We have a HUGE schedule of appointments in the next two months, hopefully they will be uneventful. As for now, she will go back to school next week and we pray that things will be quiet and low-key for awhile. Thanks for checking on her!
1/9/06
Madison is back in her room and resting after her surgery. She did not go to the ICU because we weren't able to proceed with all that we hoped for. Before surgery, her blood levels came back that she didn't have enough clotting ability and the surgeon did not want to proceed. They rechecked the levels later and went ahead and took her to the OR. Once there, the surgeon replaced her ear tubes and drilled new holes into her sinus's. When he went to look into her throat he was surprised to see that her carotid arteries were misplaced and were actually located in her tonsils. He told us that her tonsils actually had a pulse! If he had cut she would have had a stroke that could have been fatal. He came out to tell us that he wasn't capable of doing the rest of the surgery w/out a vascular surgeon and possibly her palate team. He wasn't going to risk her having a stroke, and we agreed.
Dan and I are going to have to step up our game in watching her for obstructing when her tonsils are enlarged. If she does obstruct, the team will prepare and operate ASAP to remove the tonsils. It is a wait and see game from here on out. In the mean time, he was a bit concerned about her hearing by the look of her ears, so we will continue on trying to give her the best chance possible by working with her and using our resources and we will keep looking toward the future!
1/8/06
Madison surgery will be "afternoon" on Monday. She will be prepared prior to that with a sedative and us talking to the doctors. I will email after she is taken back and then again later that day after we see her ICU and get settled. Thank you for your prayers, needless to say we are very nervous about this. Sad part, is Ben is really nervous too, he had a really hard time this weekend knowing what is going to happen. I have made it a point not to ever lie to him and we try to be evasive, but at this point he knows what it up. Please remember to pray for her and us.
1/7/06
I have signed all the release forms for her surgery to be done on Monday 1/9/06. She will be having the full 'makeover' as we have been calling it. I was excited because the prognosis was listed as 'good'...we've never had that! Always been fair or poor, but never good! Anyway, Maddy didn't want a boring weekend so she started to retch again last night and we had to turn off her food and go completely to TPN (IV nutrition) until after her surgery. Yes, these are two separate issues we are dealing with, one will be corrected with surgery, the retching is just par for the course. I dont know if we will ever get past it. GI Doc talked today about trying a new motility drug...maybe after her surgery to see if it helps. We also noticed that her 5 little hernias have now banned into one much bigger hernia. We are going to have to have the general surgeon look at it sooner or later. The 'fix' would be to put a screen into her abdomen to hold everything in since her muscle tone is so poor. (no, exercise wont help :) and to prevent any more hernias from popping up. The retching is making that situation much worse. Well, I'll worry about that another day.
I do not know what time her operation will be on Monday because she is an 'add on' but will post when she is taken back. Please, please pray for a good outcome and that she can rest well in the ICU after.
1/5/06
Madison was admitted to the hospital about 10pm her birthday night with a 103.5 fever and a white count of 21,000. She was very sick with infection which turned out to be the same old sinus stuff. She was admitted and put on some serious antibiotics. Her surgery has been moved up from 1/23 to probably Monday 1/9...she is going to be added on to the OR schedule. ENT doctor and I talked about what needed to be done and decided that she would remain on the IV antibiotics until surgery and then go to the OR in the best shape possible. He plans on changing her ear tubes from the typical plastic ones to steel ones that are supposed to last a lifetime. She will also have new holes drilled into her sinus's and have them cleaned out & flushed with antibiotics. Her tonsils will be removed and her adnoids will be evaluated. Although it would be great for them to come out, they help close the sub mucous cleft palate so he may only be able to take part of them. We certainly cant afford for him to undo what they did in her cleft palate surgical repair.
They plan on her going to ICU for a couple days post-op so that she can be on a vent and have no worries about swelling and pain management. Maddy also requires such high doses of pain medicine that she literally would stop breathing before she got comfortable. On a vent, that is okay, the machine can breathe for her. It is always difficult to see her that way, but I feel really good about the condition she is in right now. Her lungs have been well and the antibiotics will have killed any lingering germs by then. I will post the day of surgery and then as much as I can there after. I always appreciate words of encouragement :)
1/2/06 (Madison's birthday)
Well, we really did it! She was home for thanksgiving, Christmas, New Years and her 3rd birthday. The curse has certainly been broken. Today is in fact her 3rd birthday although we celebrated last night. Good thing because today we are dealing with a 102 fever. I am sure we will be on our way to the ER shortly because this fever broke through the antibiotics she is already on. She held out as best she could, I guess. Last night was fantastic. She had a beautiful castle cake and we 'signed' happy birthday to her. She watched Ben open her presents and was very happy with what she got. She even gave US all a gift by tasting a slice of her cake on her own accord. She really liked the icing, finally something with some calories! She started to cry in the middle of the night and it has been down hill since then. I am trying to buy some time, but will probably head out soon. Thank you for the "maddy at home for the holiday" prayers! I'll post pictures soon :)
Madison's Update Archives
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