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12/27/05
We made it home for Christmas!!! We were released from the hospital 1 1/2 days prior to Christmas and as it turned out maybe that was too early. She was fine when we left (after I got done begging to leave that day) but in the car on the way home she was sick as a dog. She never even really woke up that afternoon or evening. It has been at least 5 days and she is still having these periodic episodes of retching, poor kid. She at one point had broken all the capillaries in her face from being so sick. Anyway, Christmas eve was fantastic at my parents house, but she then was sick all through the night. We were drug out of bed early by Ben :) too tired from being up with her, but we came down and had a great time with Ben.
She mostly laid there on her pillow not too interested in anything. In that aspect it was a bit of a disappointment, but it was great to be here with all 4 of us under one roof. The past couple days she has begun to perfect the art of being a couch potato. She got a lot of different blankets and pillows for Christmas and is putting them to use! Today we will shop for her birthday. I have lower expectations after Christmas, but look forward to it for sure! It is a very emotional time for Dan and I, to see our miracle that wasn't going to live past 2 months, turn 3 years. We also think about what the future brings and that can be very emotional as well. Regardless of where it is celebrated, it will be a huge day for us!
12/8/05
Wow! We really did get to spend Thanksgiving at home! It was the best holiday I think I ever had. I cried twice, literally, tears of joy. It meant so much that she was with us another year, but more so that we celebrated together doing what we wanted... NOT in the hospital. The kids ran around with so much excitement watching the Macy's day parade and then played outside on the swing set for hours. We took some great pictures, ate a ton and it was just wonderful. Being home for that gave me enough happiness that I can continue on even with some more holiday admissions. I had my day :)
Madison went to neurology today and we were told to go see another neurology-opthomologist for her eyes. Although her low-muscle tone is her worst issue with them, there is nothing they can do for that. Her eyes may have some hope with this other doctor. Whats one more doctor, right??? We also have met with the school system about special needs-head start-preschool. I am not happy yet! Her sign language is too advanced for public school, but the speech school and deaf school will not take her with a g-tube. Guess that leaves me, huh? Mom, nurse, teacher...whatever! I am still working on what I hope to be a solution.
I am thinking of pushing for a sign language fluent tutor at home. Thats not asking too much in my opinion. I mean I certainly want a teacher more fluent than her, and a speaking board to talk for her is out of the question. Next week we are full of appointments so I will up to date again soon. Surgery still scheduled for January 23rd.
11/16/05
I hardly ever get to update between hospitalizations, but I wanted to share this week with you. This week Madison had her school pictures taken. Now, as you know, her 'school' is medically fragile kids as students and nurses running it, but to her it is "school". Benjamin picked out a new, beautiful outfit and matching hat for her to wear for her pictures and when she got all ready and Ben and I dropped her off, I burst into tears. Benjamin didn't even know what to think, but I explained that they were tears of happiness. LOOK at some of her 'scary' hospital pictures, LOOK at how her life started having open heart before she was a month old, think back to when I was told that her infection was 'not survivable'...and here she is getting her school pictures taken! I thought back to when I was told to make plans for her funeral and I snuck out into the hall and called her primary nurse at home. I asked if they were just going to unplug everything or give her sometime. I called everyone in to say today was the last day...God, where we have been. And then, there she was sitting and getting her school pictures done like a typical kid. I cried and cried tears of joy, pride, relief...I cant tell you all the emotions I've had. Before we got out of the car, Ben said "We are really proud of her, huh?" Truth is, I am really proud of both of them.
I thought I wouldn't top that moment for a long time, until I went back to school to pick her up that afternoon and for the first time ever, she signed "Mommy". Because I am the primary signer in the house I am always signing everyone else's name, but she never really sees anyone sign Mommy. She is now signing full sentences and I cant believe her cognitive ability when she comes in from another room and tells me a whole story about something she just saw! Just today, as we rode in the car, she signed "Look at the red trees". She is truly experiencing life and all its changes. I cant tell you how she takes in life...every little bit of it. Her mind and her spirit are truly a gift that we get to share everyday. For her to be so different, she is just so happy.
Had to share :)
11/12/05
Once again we have returned home from a 7 day hospital stay. She was diagnosed with pneumonia and chronic sinusitis. Being this sick sent her heart into distress and she required oxygen for 2 days, more due to stress than lung issues. She was also symptomatic of heart failure and required IV lasix to pull fluid off her heart and lungs every night. I will admit, I was scared. She came home and is feeling much better. She is on antibiotics for the next 4 weeks, until she goes into the operating room. She will have her sinus area cleaned out and new holes drilled into her maxillary sinus for they have closed again. She will also have her ear tubes replaced and tonsils removed. Lastly, we are hoping that they will fix her strabismus (wandering eye) while in there. She has already lost a lot of vision in that eye from lack of use. This is Maddy's version of "extreme makeover" :)
With some of the money from the tennis tournament we were able to purchase a GPS locator for Maddy. We found out, the hard way, that when we call Madison's name she cant respond because she is non-verbal, so we cant find her!!!! Even if she is 5 feet away, if I cant see her, I dont know where she is and you can really freak out quickly not knowing. She is so short that she walks under clothes racks in stores and is shorter than bushes outside so it is really hard to give her some freedom. The GPS will go on her belt loop or shoe and will chirp if I press my button. I am already relieved and it isnt even here yet!
On a more personal note, I am struggling lately with Maddy turning 3 in January. It is getting to the point where it is more obvious that she is delayed and I guess I am just now tuning into that. Shopping for stage 2 baby food...hoping she can eat just a bit, purchasing size 3 diapers when she should be getting training pants, looking for Christmas presents at the 6 months language level. She cant walk on a street, she cant even say mama, she has a bottle and a pacifier...for a while it hurts.
On the flip side, I keep reminding myself that she actually knows 2 languages because she understands english but uses ASL! I also remember that she knows how to work a G-tube, dispense medicine and work 1/2 the pumps at the hospital. She is so bright-just different from most kids. Anyway, she is perfect the way she is. Certainly her spirit is whole.
10/28/05
Madison had another dose of IVIG yesterday. We were there for 9 hours held captive in a little tiny chair...no fun! They gave her benedryl to help her body from freaking out when the infusion started so she slept rather nicely for about 6 hours. I mostly stared into space, ahh...another productive day! She was diagnosed with strep AGAIN on Wednesday so we started oral meds and the IVIG to give her a fighting chance. She also had red sores all over her tongue which I found out were from a viral infection. No idea what kind of infection, and no way to treat something viral, so we just watch and wait.
I had a 3rd therapist suggest to me today that Maddy maybe color blind. She cognitively understands the color games we are playing, but cant seem to get the color thing down...not even close really. She watches your face to see if your expression will tell her if she is doing it right or wrong. If she is that smart to watch your face, then she could surely be able to learn a couple colors. She even knows the sign for almost all the colors if you call them out, but she cant pick them out. Dan said that is good because now we don't have to fight her about driving a car :) Daddies and their little girls...
On Friday we are going to the cardiologist for our 4 month check up. Everything SEEMS fine with her heart except for her blood pressure, but we will see what he says. Strep can attack a defective heart because the lining is rough instead of smooth so the germs literally get caught in the scar tissue and infect the heart. Something we always risk and always pray about. I do wonder if he will push for her tonsils to come out because of the constant strep. Three times in 3 months seems a bit much to me. Ped's said that if they are in there for any other reason they will take them out, but that is what everybody says about everything! We are waiting for hernia, eye, and now tonsil surgery!!!
None the less, we are home and loving it!
10/14/05
Maddy was just released from Egleston again this week. She was admitted for fevers of 104. Turns out aside from strep throat, they couldn't find the reason for her to be so ill. Five days into the fevers she received an IVIG treatment and the fevers broke. We stayed 5 more days trying to get her to accept her G-tube feeds again without vomiting. She came home on Tuesday night and played baseball in the cul-de-sac with Ben...what an amazing girl.
While there she received her flu shot which usually makes her very sick within about a weeks time. Maybe with the IVIG in her system we will bypass that. I did come home and wash clothes and re-pack just in case.
On a good note, Maddy learned to suck from a straw this week! You can not imagine all that goes into that when nothing comes natural anymore. The lip closure, proper tongue placement, suction from a cleft palate and then not allowing the fluid into her lungs! Okay, okay, so she choked a ton the first two times, but then she really got it. I think we will be better using a coffee stirrer until she gets it better. Who knows what she will do next???
She did manage to stay through Dan's birthday and our anniversary, but you know how much Maddy likes the hospital to celebrate holidays!
9/21/05
This will kind of serve as 2 updates in one. Madison has been in the hospital again with cyclic vomiting. No reason for it to have happened, she just woke up one morning and there it was. Cost us 7 days in the hospital, 5 days she wretched non-stop and the rest of the time she was withdrawing from Adavan. Turns out that every time she does this she will have to be admitted, where as we used to manage it at home. They said that she is too hypertensive and to fragile and that she needs to be watched, so..so much for keeping her home. It does make it easier for Dan and I to have her there because she can get better sedatives and sleep through a lot of it.
Today Madison started to make intentional utterances! When shown a flash card she would sign the word and when I pushed and pushed for her to talk she would in fact make noise with her mouth!!!! This is the same child that made NO noise except for crying and laughing until very recently. So far she has said "b" and "eeee". SO cute to see her point to her mouth (like I do mine) and babble :) Oh Lord, if this broke the dam between the brain and mouth she will have so many more possibilities. The quality of her speech will still reflect her palate issues and paralyzed vocal cord, but along with the sign language she should be able to get her point across. Thank God for this sign of improvement. It has been A LOT of hard work!
8/30/05
Madison had port put into her chest yesterday in the operating room. It was put there so that we would have direct access to a vein when needed. It was taking up to 2 hours to start an IV or to draw blood because her veins are so poor. This will allow for a lot less stress on her when she gets her IVIG treatments every 4 weeks, let alone all the other admissions throughout the year. She did amazingly well and came home the same night...unheard of for her! When we pulled into the parking deck of the hospital at 5 in the morning Madison signed 'crying' and 'boo-boo', she knew what was coming. She is so smart. I am glad that it is over and that she did so well. We have to pray that it doesnt clot, doesnt get infected and that the vein holds up, she really needs this to stay for a while.
The soccer tournament this weekend was amazing! It was so much fun and we raised a good amount of money for Maddy. We found out the next work day that the tennis tournament will be in October. We have to catch both these events between seasons, so they kinda end up close together but it lasts her all year :) We are so blessed to have such great friends and family. A HUGE thank you to each and everyone that came out there!
8/26/05
Madison returned to the orthopedic this week to discuss how her new orthotics were doing. We had talked about how her legs were hyper-extended and she walked as if one leg was longer than the other. We measured and they were in fact the same length. I suggested doing a spine x-ray because of the anomalies that DiGeorge kids have with their spine and sure enough it came back that Madison has neuro-muscular scoliosis. It is not the kind of scoliosis that the general population gets and never really has to deal with...that would be too easy :)
She has scoliosis because of weakened muscle tone from either her spina bifida or possibly cerebral palsy. This can be rather progressive and she will have to be watched every 4 months or sooner if she hits another growth spurt. She went from being fine to having an 11.5 degree curve in 5 months. At 50 degrees they usually put a rod in their back. We will certainly pray about that!!!! In the morning we have her tournament and we are very excited about seeing all the people that care about Madison's health and well being. She certainly has touched a lot of lives and is a true inspiration to so many. It will be our families last hoorah for a bit since Maddy goes back into the OR on Tuesday to have a port put in.
8/11/05
Today Maddy had her 3rd dose of IVIG and it was much better than last month. She wasn't nearly as sick w/ it. She was pre-medicated and slept through almost all of it so we will see how tomorrow goes. The bad part was it took over 2 hours to get a IV line started. It got so bad they had to have someone come up from the Operating Room to try. Finally they got it, but Maddy was throwing up from stress and I cant say I was much further away. Several of the other Moms had to leave the area because they couldn't take it anymore. I have already called her doctor and am insisting that they get her a port. That is direct access to a vein, all they have to do is break her skin, the port is already surgically implanted into her chest and stays under the skin...ready to use. Madisons condition makes her veins kinked and many are dead end veins. The few good ones have already been ruined in her short 2.5 years. Today we finally ended up getting her IV started in her foot. We used her feet before but today we had to go so close to the ankle that her foot had to be taped down to a board in a very cumbersome position to allow the medicine to flow in. UGH!
After all we have been through today, I have to share with you what I saw and ask you to try and understand this little underground world I live in. Maddy and I were there all day. First ones in, last ones out. We saw 2 year old kids fighting cancer with smiles on their faces. We saw a beautiful 16 year old girl who had lost all her hair, sick as a dog while getting her chemo...but making an appointment to be back on Tuesday. We saw a set of brothers walk in w/ backpacks full of fun stuff to sit all day and get their weekly blood infusions. We saw a 4 year old boy walk in (barely) with a platelet count of 6 (we have been there!) to get platelets and he walked out all perked up and full of life.
I guess I wanted to share this because it really throws your life into perspective. Have something you don't really want to do? Imagine how they feel. Feel like nothing is going right? Think of them. Think you got it so bad? Think of what your life was like when you were their age! Think of what their parents have to deal with.
I wanted to share because it made me feel happy that I have it so good. It could be worse, it could always be worse. I swear these kids were put here to teach lessons, I just try to spread the lesson a little further than the infusion room :) Have a very happy and blessed day! Lisa
8/4/05
Madison has been home since 6/16/05, that is a new record for her! We hope and pray that the IVIG is working and she is fighting off infections. Since she has been home we have really been able to catch up on a lot. She will be going to The Atlanta area school for the deaf next week to have her hearing retested. A wonderful person from Georgia PINES, a deaf/blind resource, was out to the house and based on her work with Madison she feels certain that she can not hear sounds such as "sh,f,p,th". That would maybe help explain her not talking and confusing words like mouth and mouse. She cant hear the difference. Maddy has started to wear both hearing aids again and is already much more vocal. Her sign language continues to improve everyday. She is so smart!
Next week we go for IVIG for the 3rd time. I am to understand that sometimes they are harder and harder to deal with each time. Last month Maddy was pretty darn sick for 2 days. Still worth it, but so hard to intentionally inflict on her. We also have plans to talk about getting another central line or a port in her chest. That would be a surgically implanted line in her chest for easy IV access. They would only have to break the skin to access the IV line instead of hunting for veins and then finding that they blew or are dead ends. Sometimes it takes them over an hour to start an IV because of her poor vein condition. It is a small operation to have it implanted but having the line in your body is a risk because it is a foreign object subject to infections.
We are really looking forward to the upcoming soccer tournament and hope to see lots of friends and family there to support Madison!
July 2005
Madison has spent the majority of the winter in the hospital, she has again missed Thanksgiving, Christmas and now her 2nd birthday at home. She battled, and won, her fight with RSV, several pneumonias, blood, lung and G-tube infections. She has also recently had 2 operations and has had countless sedation procedures in 2005. She has been diagnosed with strabismus in her left eye which can lead to blindness if not treated surgically very soon.
It was caused from her being paralyzed and sedated during the first months of life which is when your eyes usually develop. We gained better control over her hypoglycemia by testing her blood sugar daily and she was fitted with new leg braces by the orthotics department in hopes that she will be more stable and that her hips will grow correctly. She will have to have hip and spine x-rays every six months to make sure that she is growing straight. Madison is undergoing IVIG infusions every 4 weeks to try to give her a fighting chance against infections. This is a blood product (immunoglobin), given by donors, that will be infused into her vein over a 4 to 6 hour period at Egleston.
She will do these treatments for at least 6 months and as long as 2 years. We are also planning to spend the Fall at The Marcus Institute to get a developmental delay workup. The delay situation is due to anoxic episodes during her first months of life while she was in the ICU and the work ups will allow for early intervention so that Maddy can have the best chance at beating the odds.
2/17/05
So many people have asked for a Maddy update and I am glad to say that she has been 100% uneventful! She is eating like a mad woman and vocalizing so much I can hardly believe it. Don't get me wrong, she still doesn't chew or really swallow on purpose, but she puts shredded cheese in her mouth and it eventually slides right down! She loves it.
She has learned probably 3 or 4 signs just this week and is the happiest I think that I have ever seen her. What a wonderful break! Her hearing doesn't seem any better with the ear tubes but I think her head in general feels so much better having her sinus's drain like normal. Imagine that...I said "normal"! She is still scheduled for her surgical palate repair March 9th, and it will be a tough one...I cant imagine how uncomfortable that will be.
Her Uncle is still planning to run the BATAAN Memorial march in March. It is the 26.2 mile run, in the desert, with a 35lb back pack in high altitude. Please keep him in your prayers, he is doing this to help raise money for Madison. (www.madisonfaith.com) We also got "the call" and will be headed to Children's Health Care of Philly the first week in May to see 15 doctors in 11 days! Again, just thought you might want to hear all the great news surrounding us right now. Not to often I can say that, huh?!?!? Enjoying everyday that we are home and together, Lisa
2/8/2005
What a week! Remember that Tomorrow, Wednesday February 9th, Madison will be in the Atlanta Journal Constitution in the Living section of the paper. There should be a great little story about her in conjunction with valentines day (you know, the whole heart deal :) . Also we got the call from Children's Health Care of Philadelphia and they are ready to see Madison in the DiGeorge clinic the first week in May! I am telling you, I think this is going to be a great year for her!
Remember, you can get the paper on line at www.ajc.com
Go to 'Living' section and check it out!
Lisa
2/5/2005
Once again she surprised us, but this time with good news, and came home 3 days earlier than we expected! She looks like nothing ever happened and is walking and playing with Ben. Oh, Lord does it feel great to be here.
Our plan is to stay healthy enough for surgery March 9th to repair her palate. She did so well with this I feel great about her doing it again, but I have already been forewarned that this will require ICU
post-op.
Don't forget...like I won't remind you...that Madison will be in the AJC living section of the paper on Wednesday. Also my brother, Pete, was in the Atlanta Sports and Fitness this month as one of the top amateur athletes in Atlanta...check it out too!
We THANK YOU GOD for offering Madison a better quality of life and for things going so smoothly.
2/3/2005
Miracle Madison!
We have had another miracle!!!! Madison was brought up to our room just an hour ago. She was riding in the wagon...sitting up...and cried when she saw me! Needless to say she is in la la land, on heavy sedation, but she looks GREAT! Her nose is bleeding, and her eyes are already starting to get swollen, but the central line is out and the ear tubes are in! He said that he cleared a huge hole in her sinuses and
everything went great. She even came off the vent without a hitch. they weren't able to do the hearing test but he said that he thinks that she has permanent damage that is pretty severe. We can work with that.
As we all know from Maddy's history we still have a good 3-4 days before she is out of the woods. She has had a PIC line placed in her right arm. Basically that is a temporary IV line in her elbow that is threaded up her arm, across her chest and next to her heart. This will be removed before we come home, but for now it is a source for infection and we want to not have ANY problems with that.
Madison will be able to go home and play in the bath tub for the first time EVER with out that central line. We are so happy about that, she has never had a 'normal' bath.
Thank you for all of your prayers, Dan and I were so blessed to have so many people praying for her. I think God probably said " Alright already!". ha ha ha. Thank you also to the people who came to sit with us and for my special visitor this morning. A woman that I have met through email but never in person, until today, came to the hospital with well wishes and prayers. What a great thing to happen! I'll keep you posted more Friday, it will probably be a difficult day.
FAITH prevailed!
Lisa
2/2/2005
Madison will be having the Egleston extreme makeover
Thursday at 1:45. They expect the procedures to take
2 hours or so. She will be having the complete sinus
reconstruction, ear tube placement, and central line
removal and POSSIBLE temporary replacement if they
think that she is going to have a 'hard' recovery.
She will also be having a special hearing test done to
measure exactly what her hearing loss is. We know it
is there, but have never been able to measure it.
This measures outside sound to what her brain actually
hears. I am excited about that. Now I will know what
we are dealing with.
I am very optomistic that all will go well, but lets
face it, this is a lot of work and I am her Mom...so
my belly hurts :(
I already know that you will be in prayer with me
throughout the day and I will draw strength from that.
I will think of all of you praying for her and I know
that God will hear us. PLEASE feel free to call me
and ask about her, it helps me realize that other
people are praying too. Sometimes I need that.
I'll email as much as I can tomorrow to keep you posted. Thank you again.
Lisa
1/31/2005
Madison had her CAT scan. I wish I could say it was
uneventful. She had an impossible time getting put
under. They used several different narcotics and she
still was not going to go to sleep. She finally
passed out for a couple seconds and they managed to
get the scan but her stats dropped and she had to be
bagged 3 times. She woke up from that and became
extreamly combative. It took an ICU doctor, the
nurse, Dan and myself to keep her in the bed and from
hurting herself. It is over, and it is done. I'll thank God for that.
I've had my fill today. She is now asleep upstairs in
a padded crib incase she wakes again Dan and I are by
her side.
On the bright side, I am so astonished at the fight
this kid has! I feel so much better with her going to
the OR knowing that she has such a powerful will to
live. So many of us complain about life, and Maddy
just wants to stay in the game :) No matter how bad
of a day she has. God has truly blessed her.
Until Tuesday...
Lisa
01/25/2005
Madison will be admitted to Egleston this afternoon. She came down with infection last night and we went to the ER only to be sent home with a diagnosis of pink eye. We all know that was NOT the case! Maddy has what seems to be a sinus infection that is so bad that it is draining yellow muck out of her tear ducts in her eyes. Her left eye is about swollen shut and she has fever. Her platelets are hovering at about 100 (should be 150-400) which is a sign there maybe more infection in her blood.
Her 'regular' doctor was
informed this morning about her condition and is
admitting her knowing how sick she probably REALLY is. I cant believe that we got stuck with such a
incompetent ER doctor and wasted a whole night. Well,
what can you do???
Soon enough her regular doc's will do her work up and
get to the real root of the problem. Pink eye...I
wish!!!!!
Please keep Maddy (and Ben) in your prayers. Gee, we
were home a whole 10 days!
Lisa
01/15/05
Oh, thank the Lord, we have made it :)
This seemed like the never ending trip! We came home
bright and early Saturday morning, mostly because I
made a thousand trips to the car all night packing.
Seems like we have been there forever. The whole
house looks different with Christmas all put away.
There is a little something new every where I look.
Madison is thrilled to be home, she truly was
screaming with joy as we got into the car and again as
we pulled into the drive way. She will sleep good
tonight!
Ben is much happier with us here and seems a lot less
stressed. I think that he has reached his breaking
point though and we have an appointment Tuesday with
the pediatrician to talk about his tension level. The
poor kid has just had enough. He is so smart that he
understands a lot but he cant process it all. He asked
me the other day, when he came across a picture of
Maddy in ICU, if she was dead there. He needs some
help and we are going to get it for him. In the mean
time we would certainly LOVE if you would keep him in
your prayers.
We are so blessed to be home, Dan even said that he
could not wait for the 'clean' house to look like
Maddy had been in it again! So very happy and blessed
we are!
Also, Please remember to check out Maddy's webpage.
Soon her updates will all be posted on it so that you
can check them at your leisure. www.madisonfaith.com
Madison's Update Archives
| All donations go directly to Madison's fund. You may also choose to send a donation by mail to: Madison Faith c/o MCS P.O. Box 670374 Marietta, Georgia USA 30062 |