Updates on Carter's Condition

Buy a case of candy to Help Carter

We are selling candy to raise funds to help Carter and his family. The candy currently avalible is Milk Chocolate, Chocolate Crisp, kind of like Nesle Crunck, Chocolate Peanut butter, and Chocolate with almonds. They are all very good and sell for $1.00 a bar. If you are interested please send an E-Mail to info@helpcarter.org and we will get back to you ASAP.

Carter leaves for Riley to be admitted on April 8th. He will be there for 3
days for an extensive testing to hopefully help the Dr's diagnose the types of
seizures he is having. They have been increasingly stronger and longer in
duration. His last two, he nearly lost consciousness. We are very concerned but
know that these tests are very important in the Docs figuring out what kind
of medication he needs to control these.

He also is being completely fed by his feeding tube now. Baby food has been
taken away, and he can't have anymore bottles, even thickened He was
beginning to love his baby food, but he has been choking and aspirating so
much, that the Dr's just don't want us to risk this any longer, so everything is
going through the tube. He is a trooper about it like always, but we can
tell he misses his food. He still looks really swollen and puffy. We don't know
for sure, but that usually means his blood pressure is very high. We are
praying that they can get everything under control this week while he is an
inpatient.

Today, the WWVMC, held a benefit ride on behalf of Carter. We don't have
final totals as of yet, but early figures suggest that they raised over 2000.00
dollars and had over one hundred bikes. They presented Sierra with a
commerative plaque and a T shirt for Carter. We have never felt so much love and
support. They are a wonderful group doing fantastic things for children in our
area in need. I encourage everyone to visit their web site _www.wwvmc.org _
(http://www.wwvmc.org ) support their various causes that they ride for. We are
eternally thankful for what they have done.

I will update everyone midway through his visit this week. Thank you all for
the thoughts and prayers. We appreciate them all.

Quick update on Carter because we have had so many emails asking. We are
leaving for Riley tomorrow. This will be the first of his in hospital stays this
month. He is scheduled for four. They will help better diagnose his breathing
and seizure difficulties,hopefully more precisely. Right now, they are doing
the best they can, but it is really educated guessing. He is being
completely fed by a feeding tube now. We have had to stop all bottles and food,
because the choking was just getting too dangerous and he was aspirating on
everything. The Dr's just didn't want to risk this any longer.His seizures are very
different. Instead of the short ones that would come one right after the
other, he is having what they think may be grand mal.They are hoping to catch one
on his Video EEG that is coming up. He still has the little ones, but the
bigger ones are coming more frequently and are scary because he actually looks
like he could lose consciousness. They seem like they really have a handle
on it, but of course, we will wait for the tests and see what they say.

His therapies are going well.They visit him 3 times a week, and we are
really seeing great progress. They have fitted him for 2 different braces,one for
his leg, and I think the other goes on his pelvic area. He doesn't have them
yet, but they think those will really help him alot. The hand splints are
working. He doesn't always have a clinched fist anymore, and has started using
them, which is a great sign. Oxygen is still on 24/7 which is a battle,
because he hates it and really fights it, but for the most part, he cooperates.

I think that is it. Thanks to all for the emails checking on Carter. We
appreciate it very much.

Just wanted to update everyone this evening. I know it is late,but I am
afraid that if I don't do this now, it will be days. Carter's past two days have
not been good. He is having a very hard time breathing as though his airways
are becoming even more obstructed.His oxygen has been turned up and he
continues to have very restless hours of sleep. We are calling the Dr's first thing
tomorrow, well today, to see if we can get him in. Of course, if he becomes
critical, we will get him to Riley before morning. This kid is a fighter. He
had blood taken yesterday and didn't even flinch. He watched the entire time
that they were preparing his arm and taking the blood. Somehow that just
isn't right for a 9 month old baby to understand the concept of blood being
drawn.He just looked so sad when they were doing it.:(

We are hoping we can get these breathing issues worked out. If not, he could
be headed for a tracheotomy and we don't want that, as the risk of infection
is just so much higher. We have enough to deal with without adding any other
variables.

I do want to tell everyone that we are so grateful that the WWVMC Elijah
Blackie Pennington club will be doing a ride for Carter on April 6th. Please
visit their website and encourage anyone that you know that rides motorcycles
to come and participate.We feel so blessed and lucky that they have continued
to follow Carter throughout his journey. We just can't thank them enough.
Their website is wwvmc.org and they have a flyer on there about Carter with his
picture and all of the information regarding the event. Again, we want to
extend our heartfelt thanks you's.

I will keep everyone updated on Carter.

Thank you all for the well wishes and prayers.

Hi everyone. Wanted to update all of you on the appointment we had at Riley today with Carter. We met with his general pediatric Dr's today, and they were very happy with a lot of the progress that Carter has been making. I know that I have said it over and over to you, that for all he has wrong with himself physically, he certainly makes up for it mentally!!! He is jabbering and making so many new noises, that it is possible at times, to forget the physical ailments that he suffers from. We talked about his breathing, and seizures for the most part, as well as his physical developmental delays. He was referred today for braces on his legs, and we will get them fitted on Wednesday afternoon at 1pm. Hopefully this will help Carter gain strength and mobility, that he is very much lacking right now. I am sure he is going to like these braces just about as much as he enjoys wearing his hand splints. NOT AT ALL!!!!! His body still tires very easily and he doesn't have a great deal of strength, but we are seeing him do things that he hasn't done before. We will keep praying and never put limitations on this little guy ever.

We are going back to the hospital on Wednesday and will have an update at that time. We will see his Developmental Dr's as well as get his braces for? him.

Thank you to all of you that are always asking and praying for Carter. We know that is what gets us through each day.

God Bless you All!!

I was asked this evening to provide an update on Carter, so here it goes.
First of all, the past 2 weeks, well not quite 2 weeks, have been very busy and
hectic with Carter back and forth in the hospital. I feel like we have been
in a twilight zone and life has stopped for the most part. You get used to
things going so nice for just a short time, and then bam, all of a sudden we are
back into the routine of Dr's and not being home ever.

He is good right now, but we will be back at Riley next week for 3 days. His
seizures are really strong and becoming very scary for all of us to watch.
He has grown so much and his strength is so amazing when his seizures strike,
that I am really afraid of what they will be like when he gets even bigger. He
has been having a hard time breathing and his feeding tube has been really
infected although, today it does look a lot better.

Really, everything is really the same. It's just been a reality check for
all of us once again, to know that Carter's condition is not something that he
is going to simply outgrow. It is forever, and will live with this forever, as
he will. We will push him each and every day to be the best he can be, and
to have the very best life he can possibly have. We will never ever put
limitations on what Carter will or won't do. We will however be realistic and know
that some things Carter may never do. His mind seems to be very sharp and
right on target. Physically, we are struggling and know that this will be the
areas that Carter will work the hardest to overcome.

To my dearest friends, Clara, Tina and Denise. I am sorry that I haven't
been in direct contact with you this past week or so. My mind has been very
focused on Carter. I am sure you were all picking up on my mental telepathy and
knew something was wrong. We're home now and he is really good. We'll just
keep saying prayers and hope the positive improvements continue. I love you all
very much and thank you for your prayers and support. I know at some point,
life will get back to sort of normal!!!

Oh one more thing. They are doing a motorcycle ride for Carter April 6th.
Alan will get the information on the website for everyone. We can't thank them
enough. They have followed Carter for his first nine months of life. Today he
is 9 months old. We can't believe the journey we have taken, but look so very
forward to whatever else is in store for us.

Thank you all again. Know that we love you all very much and appreciate the
support!

Hi Everybody. Well yesterday was an exhausting day with Carter to say the
least. I suppose his Dr. summed it up for us, when he said, that now that
Carter has (thankfully) begun to grow that, this is the time when we will see
exactly where we are with Carter. His appointment went very well yesterday.
Frustrating for us, because we want answers, but he was with 2 of our favorite
Dr's.They listen to everything and always make the extra effort where Carter is
concerned. His phenobarb levels were at a very strong 35 last night. That is
actually very good for him. It means that his phenobarb is maintaining in his
blood, and we would hope it would stop his seizures. His is not. At this
point, it is beginning to sound like he needs a new medication added. Those all
come with side effects that we really don't want to expose Carter to.
However, we may not have a choice at this stage.

We will meet with his neurologists again on Friday and try to determine,
together, what way we need to go. It is frustrating for us, as his seizures just
keep coming and getting stronger. It's a wait and see at this point. If his
activity remains, we will have no choice, than to admit him. Not something we
want to do, when the entire hospital is contaminated with RSV. That is the
condition that Carter needed vaccinated for and his insurance wouldn't
approve. They are expensive and we certainly understand that, but one hospital visit
would be a lot more!!!
For the rest of the week,we are going to try to keep him inside and just
pray that we can keep him home. I want to be optimistic, but realistic at the
same time, and am not sure we'll be able to accomplish that. They did adjust
his medication dose over the weekend by giving him one loading dose and
increasing his evening amount. It could take time for that to work, so maybe we will
get lucky, and things will work out! We're certainly going to hope for that!!

That's it for now. We are praying for a quiet week!!!!

Hi everyone. We have had so many emails asking about Carter, since everyone
knows that he is not doing so well. We were at Riley until 1:30 am Saturday
morning and then back on the phone with his neurologists for a good part of
the day Saturday. One call alone was 53 minutes, with all of us deciding what
the next course of action was going to be. As everyone knows, Carter is having
some very serious breathing issues, but the Docs are now thinking that his
disruptive sleep patterns could very well be stemming from the increased
seizure activity that he is currently experiencing. His medications are being
altered and changed, in hopes that he responds to this treatment. However, as of
this writing he has not, and we may be going back to the hospital today. His
seizures are becoming stronger and far more frequent. They are affecting
everything in his little body. He sometimes looks like a rag doll that is in need
of rest!!!

I think we kind of became spoiled. So much of the beginning of Carter's life
was spent in the hospital and back and forth, that we have enjoyed not
living at Riley. Now it seems we are falling back into that pattern once again,
with his breathing and seizure activity increasing at alarming rates. We're ok.
Sierra and I are getting back into the hospital mode, as it appears, we may
be awhile in finding a solution. Still, Carter is a happy guy! He is still
smiling and jabbering away. We know when the chatter stops that he is not
feeling very well at all. His disposition is amazing. I continue to learn every
day from this baby, and thank God we have him.

I am trying to be better at updating everyone. I will work on getting more
pics of him on the site.

Thanks so much for all the prayers and well wishes. We all knew that when
Carter started getting older, we would find out more regarding his condition
and the long term affects. That's kind of where we are now. We aren't surprised
at all. Just very happy to have him, as he is such a joy in our lives.

Keep him in your thoughts and prayers please.

Hi Everyone!

We just got back from Riley,,,,,,,,,,,,again. Carter has not had a good week
at all. We kind of knew taking him to the Pulmonary service last week would
prove to be sickly for him, and it has. He started coming down with what we
were hoping to be just a cold on Sunday, but it quickly developed into
something more. As you all know, a cold for Carter can be an immediate hospital stay
with all of his respiratory, cardiology and neurological issues. On Monday
we called the Docs and they said to watch and wait it out. We did and his
fever has continued to climb and get a bit higher each day. Last night it was
decided that he needed to be seen at Riley immediately today. He sounds
horrible, but let me tell you the good news, we didn't need to have him admitted,
just yet, as they know that we are equipped like a small hospital at our house
to take care of him. They felt like we could manage his condition at home, as
long as he didn't get any worse. He does have bronchitis, but they don't
think it has turned into pneumonia just yet. We are expecting a new breathing
machine to be delivered around 9:30 this evening, so hopefully once we get his
therapies worked out, he will be on the mend.

However, we are leaving tomorrow morning to head back to Riley to see the
neurologists. His seizure activity is out of control. He isn't having seizures
from the fever, as they are more indicititve of focal seizures that are
becoming longer and stronger. Just when we thought they were leveling off and we
had a good phenobarb level, things change. The Dr was concerned about them
today, and said we needed to get him to Neuro in the morning, so off we will go
bright and early to Neurology again.

He has changed all of our lives. And for that, we love him even more. If
someone would have told me a year ago that our lives were going to be filled
with Children's hospitals and medical specialists beyond reason, I would have
said no way. My living room now resembles a mini hospital ward, and my once
beautiful decor has been replaced with tubes and wires and various medical
machines. I once loved to walk in my house and see everything nice and neat and
just where I had left things. Now, the chaos and turmoil of a child in constant
distress has replaced any kind of order in our home. Our family was always
close, but now, we are even closer. Our friends have become our rocks. How we
would ever get through any of this, is un imaginable. I try to thank you all
each time I write these updates. I want you to know how much your love and
support mean to us. We are stronger now, for having all of you, and Carter in
our lives.

Say a prayer for Carter. He is in for rough times ahead. We know that he has
a lot ahead of him. We're going to count on you guys to continue the prayers
for him. He is a strong baby. And he has all of you!

I am going to go get things ready for home health care. I just walked in the
door and thought I should update while everything was fresh on my mind.

We love you all and thank you for the emails and prayers!!

After speaking with my friend Jeff yesterday, I realized that we had not
given an update on Carter since
December. So I decided that I had better get one out. We don't take him out
unless it is to the Dr or hospital and that has not worked out well. He seems
to catch something new every time we go!

The main problem Carter is having is his breathing. He barely gets any rest
day or night. When he finally get to sleep, his airways close and he awakes
gasping for air. We are starting to think he fights his sleep because he knows
what is going to happen. What Carter is lacking in his physical capabilities,
he is more than making up in his mental capacity. The Dr's are amazed at how
advanced he seems to be when it comes to his mental sharpness. Much to Jay's
happiness, he has been babbling DA DA since he was six months old. He is a
jabber box for sure.

His breathing has worsened over the last month or so. He was doing so well
sleeping all night and took at least 2 one hour naps. Now, it is 20 minutes
during the day, if we are lucky and he is up about every half hour each night.
Jay and Sierra are exhausted. It takes both of them to pull double duty each
and every night. Because of this, they are going to move back in with us. It's
too exhausting for the two of them, and we can offer a little bit of night
time support. I don't think I really understood how bad Carter was breathing,
until I had him for an afternoon, and tried to get him to sleep. He wanted to
sleep so bad, but each time when he would just almost be right there, his
airway would close and he would wake up screaming, of course. There are several
things going on. He does have asthma, which is problematic, but not the
cause of this. He is now on an inhaled steroid twice a day and has an inhaler if
he needs it. More than likely, he will have a nebulizer as well. But, the
problem is kind of two fold, his brain not telling him to breathe and his
laryngo Malaysia. That's basically what is causing his airway to close. Right now
we are at a point where they will consider two things. One, surgery to repair
the defect, or a trach inserted to keep his airways open and the little guy
breathing. We will be going for a sleep study soon, to a different hospital.
The Dr suggested that, so we could get a 2nd opinion at the same time the
test was being done. They wanted to do a nap study, but there is no such things
as naps these days with Carter.

He has therapy three times per week now. They come to us, and have been
working really hard with Carter. He is doing better,although he still can't sit
up, or roll over. We have all noticed that when we pick him up, his bones are
cracking, like that of a 90 year old man! He will be visiting an orthopedic
surgeon to see what's going on and also to take a look at his hips, as they
think there are some issues there as well. Right now, we can only hope that
Carter will walk, but we must be realistic and prepare ourselves if he doesn't.
His little legs just don't seem to want to work. We have been looking at
wheelchairs for him that will help support his head, because he still doesn't
have super good head control and bobs around a lot. He has a very nice stroller
that he can't use, because of his head control,so we'll probably get him into
the wheelchair soon. It will be more comfortable for him.

His seizures are under control. His medication is doing what it should be,
or at least the levels in his blood are good for now. He still has them during
the day, but the night time ones have leveled off to not so often.
No end in sight for his Gtube. He was doing really well, but lately it has
had to be used more often. Some days he gets the majority of his food through
the tube. He struggles with the area that it has been inserted into his tummy
with infection. We will be back at Riley this week to have the area
cauterized. Carter hates that. They burn the granulation tissue around the tube, and
it really hurts him! He understands where we are when we go to Riley. He
knows the scales, tables, blood pressure cuffs etc, and lets us know that he is
not happy.

So for now, we are hanging in there,full of hope and faith that Carter will
be the best he can be. We knew that as he got older, we would be finding out
more and more of the things that will be wrong with Carter. But the good news
is that we can start helping him either get better or just learn to live his
life to the fullest with what he has been given.

We have always thought Carter was given to us for a reason. He is here to
teach us all something. My admiration could not be any higher for this baby who
has had to endure and go through so much in his short time with us. He has
taught me a lot. As bad as it gets, we always know that there are so many kids
out there worse than Carter. We pray for them and count our blessings for the
good things and the progress that he has made. We love him so much, and
can't imagine him any other way.

Thank you all for the love and support you have shown in Carter's first 7
months of life. It means so much to us all. It's nice to know that our family is
in so many of your prayers.

We hope all of you are doing well and off to a great "08'. I will try to do
better in my updates, but we are gone so much that when I get back, I have
mounds of work waiting for me. Please feel free to email anytime. I am much
better at those.

Take care and Bless you all.

I know I have just updated all of you yesterday, but Sierra has asked that I send everyone a mail thanking all of you for your support and words of comfort that many have extended since Carter has come into our lives. It has been a very challenging year for our family, with his arrival and the heartache that has followed while he continually endures more and more medical challenges. We thank God that we have him, and whatever comes down our pike, we are prepared, as a family handle those challenges and love him,the way God intended us to do so. The kindness and love you have all shown our family throughout, will always be remembered. To those of you that have ignored the rumors, and fought back the horrible lies that have been said about us, we can't express the gratitude we feel for having such loving loyal, friends and family.

I have one more request. This email list was created in the very beginning of Carter's medical journey. Some of you may have other addresses that you want us to send to. Please email and let us know if you want us to change the emailing address and we will do it. Also, he still has his www.helpcarter.org page, that Alan graciously maintains and adds new pics for us, as well as his myspace page. Sierra tries to keep the pics current, but sometimes they lag behind when we are at Riley alot.

Carter went to Riley today. He had 2 scheduled appointments with his General Peds Doc and also his Pulmonary Dr. We saw general first and his visit went very well. His Dr's are very pleased with his progress that he is making mentally. Most of Carter's issues at this point seem to be in the physical Dept. They are still concerned with his mental issues as well, but right now he seems to be close to what he should be doing. Although, as he gets older, we are seeing the milestones that he is missing. He is still having seizures,apnea alarms and oxygen desaturizations. The way to stop these sharp desats are still not known, as he is on oxygen 24 hours a day. Everything is a result of the brain injury that Carter suffered at birth. Both of his general pediatric Dr's came into see Carter. They are concerned that he was denied the RSV shot, that he needs so badly and asked that we speak to his pulmonary physician at his visit to see if we can get an approval. Carter is at very high risk for developing RSV, because of his underlying conditions, but because he is not a premature baby, the insurance will not pay for the vaccine. It costs about 3000.00 per shot, according to his weight, and he needs 5 shots.

We went to his pulmonary Dr. who quickly told us that insurance companies are very selective about whom they approve the vaccine for. He has actually gone to the pharmaceutical companies and the insurance companies and delivered speeches on the importance of RSV vaccines. He said Carter won't get approved because he was not a preemie. We were told that he is very high risk and needs the series of shots,and we should consider paying out of pocket. It took awhile to grasp that. I think we are still in shock. The drug companies get richer and the insurance companies decide who receives necessary treatments, based on their guidelines. Somehow, that just doesn't seem fair at all. It gave us a new appreciation for individuals that are suffering from Chronic life threatening illnesses such as AIDS, Cancer, and organ transplant recipients , that must wait and pray that somehow they can get the care they need to get better.

His weight has started to slow down, but his blood pressure remains high. Not to shocking when he weights in at 19 lbs at six months of age. They are scheduling a sleep study, and also a new video EEG that will last for 2 days. He has 2 different kinds of seizures, and they want to really pin them down. If they are focal seizures his medication may need to be changed. The sleep study will help them determine if we are treating him correctly with his oxygen, and if there is something else we should be doing.

Carter spent 3 days at Riley last week. One was because he stopped breathing and they wanted to make sure he was ok. The other days were for his G tube which is severely infected and ultimately in need of replacement. On Friday, we went to neurology with him and they agreed that there is something going on with his swelling. No one can figure it out, but at 5 mths and 19 lbs, he is very overweight. The mystery is why. He doesn't get nearly the calories that other babies get and he hasn't even been able to use his tube, because of the infection, so at this point, everyone is concerned, but really has no answers. It isn't normal baby fat. It is definitely Edema.

His seizures are still coming, though not as often they are different and stronger. In January, he will be admitted for 2 days, so the Dr's can watch him and do a follow up EKG to see if they are of a different kind and he needs different medication. He continues to be in oxygen 24 hours a day, but still has problems with his levels dropping very low. The Dr's aren't sure why he dips, but plan on more tests to follow up.

He has along winter ahead of him and will work very hard with his therapists that will come two times, each week. He will have developmental and physical therapy Monday - Friday. Right now, he has very low muscle tone, and can't even attempt to sit up, or provide any support for himself. There is one side of his body that just doesn't work, so hopefully the therapists can get him moving, but of course, they make no promises.

Carter is home, but goes back to Riley on Tuesday, Thursday and Friday of this week. He has a biopsy this week on his intestines, and a new short ekg.The other appointment is with pulmonary. He had three apnea episodes just today. They seem to be increasing.

The last two days have been off days for him. Sierra has had to increase the amount of his oxygen to keep him at a steady level. Ray and I had Carter for about 4 hours today, and he seemed happy, but just a bit off. He just doesn't have great color.

It's hard to believe Carter will soon be four months old. His first three months are a blur. I can't believe we are almost in October. Sierra and I were just saying how fast the summer has gone. The good news, he is four months old, and while we have no idea what the future holds for Carter, he is getting stronger and we are continuing to learn about all of his conditions.

As of right now, Carter is a patient in Riley Hospital. He has had numerous tests done over the past month on his stomach, his lungs, heart, brain and a sleep study. The sleep study revealed abnormal brain waves,that indicated two different types of seizures. He is now on increased doses of Phenobarbital. However, the seizures are continuing and becoming more frequent, longer in duration, and very strong. His blood pressure yesterday was very high 120/80. This is an adult pressure, certainly not one that you would expect to see in a 3 month old baby. They have been doing blood tests, chest xrays, echos and EEG's to attempt to figure out why he is having so much swelling. He is retaining water, to the point of gaining almost one pound a week over the past 6 weeks. He now weighs 15 lbs 5 oz's. The G tube is working well, but the number of calories Carter takes in, there is no reasonable explanation for this accelerated gain. Obviously his water retention is a huge problem, and for now, the Dr's are not finding the culprit. He looks like the Michelin man in the commercials he is so puffy!

Last week at his sleep study, his oxygen dropped to 65. Anything under 93 is considered abnormal and a reason to be concerned. The drop to 65 has been a very big worry. He is on oxygen 24 hours a day. When I left the hospital last night, his oxygen was dipping to 79.The nurse that was taking care of Carter said that she thought it might have been due to him having a seizure at that particular moment. He had 7 seizures that they could document in a 20 minute period upon initial evaluation yesterday afternoon. We were thankful that they occurred with the medical personal standing by watching him. It gives them a better understanding of what happens to Carter's body when he has these seizures. He is also scheduled for a biopsy on his colon, due to his difficulties he is having with his tummy and digestive system. His G tube area was cauterized yesterday afternoon, so he is very tender.

By the way, the winner of the TV was Sherry Love of Richmond Indiana. We wanted to take her picture with the TV, but we caught her off guard having a bad hair day!!!! Just kidding Sherry. For those of you that don't know Sherry she is an owner of a local hair salon here in Richmond.

We will get updates out more often. Alan has been maintaining the site, for us, and his own wife Regina, has just undergone one more surgery two days ago. We don't want to take time away from his responsibilities to his wife, and we aren't computer people, so if the information lags, I apologize. Having a sick family member takes up a lot of time, and sometimes, you are simply so drained after being in the hospital, the last thing you can do, is relive the days events and spend time on the computer. We absolutely support and pray for Alan and his family. We hope you will join us.

Lastly, many have asked if we were going to sue and retain counsel for Carter. The answer to that has always been yes. However, our primary focus and concern has always been Carter. We did however, meet with an attorney that traveled to Richmond from Indianapolis, and Sierra and Jay will initiate the papers when Carter is released. At that time, the attorney will become the spokesperson for our family and will handle releases and such through the website and the local media outlets.

I hesitate in sending this email out, because I every time I think we are doing well, with Carter, he literally ends up at the hospital. However, his stomach is still bothering him, and we will see the GI Dr's this week, at the same time he will be admitted for his video EEG. We are dreading that test, as he will be hooked up and monitored for 24 hours.

Right now Carter is up to 7 laxative doses given per day, and it is not working. We are calling GI tomorrow to discuss the possibility of a 2nd needed surgery. This is what they have been trying to avoid. However, I think the writing is clearly on the wall. If he needs it, he needs it.

I will let you all know how carter is doing in the morning. He looked very sick when they left and would not stop crying, which is definitely not normal for Carter. He is usually very quiet baby, but tonight, you could tell he did not feel well.

Sierra and Jay appreciate all of you. Thank you so much.

I will check in, in the morning.

Please keep Carter in your thoughts.

Monday July 30, 2007

Carter has a busy week this week. Today he saw his Dr's in both pulmonary and developmental. It was decided that Carter would benefit from a feeding tube inserted into his tummy direct. The tube that he has now is in his nose and down his throat. He is gaining weight, but because of his tape allergy and the way we must move the tube each day, it isn't helping his respiratory system. He is snoring more, and getting congested. If they were to start him on steroids, then the tube could not be inserted as he would not heal well. Also, he is having difficulty keeping up with his increased feeds, so the stomach tube makes a lot of sense. The surgeon called Sierra a few minutes ago, (almost PM) and said he would check his schedule and get Carter into surgery this week. We will let everyone know.

Also, he will begin physical therapy as soon as he gets out. Speech therapy was also mentioned after his exam. We are not sure if they noted something when looking down his throat, but they told us that Carter probably would need to have this as well.

Last Thursday he was at Riley and they repeated a test for glycine, that had come back abnormally high. We hope to get the results of that test tomorrow when we see his neurologist. He was tested for 83 genetic disorders, and the results of those test are not back yet. The Phox 2B is the one we are anxious to get back, and it isn't here. It will be 4 weeks tomorrow, so we are hoping they may have something back on a lot of the tests. They did tell us that some take 6-8 weeks for results.

Carter also has Atrial Septal Defect, which we were unaware of until today. This usually heals on it's own, but they are concerned with his, as he has 3 additional abnormalities along with the Atrial Septal Defect. He see the pediatric Cardiologist on the 9th of August.

His alarm for breathing has been going off alot. Three times last night, so they are keeping a very close eye on his heart lungs and seizure pattern. He has a video EEG on August 14th that will go for 24 hours. We hope to learn a lot at that time.

Raffle tickets will arrive from the printer on Wednesday. We are giving away a 42 inch plasma HDTV. Insured shipping will be done for any winner not residing in the delivery area. Drawing is August 31st. 10.00 donation for each ticket.

Friday, July 20, 2007
Carter is home once again, after a three day stay in Riley to have his medicine adjusted. He will have weekly appointments with his Dr's typically 2-3 times per week. Because his condition affects so many of his systems, each team of Dr's are keeping a very close eye on him. The seizures are the biggest area of concern right now, as they are affecting his breathing. Imagine a 2 year old holding their breath, as they have a temper tantrum. Often times, when he has his seizures, that is what he does. He just forgets to breathe.

Last night we noticed an area on the back left side of his skull beginning to swell. We are calling the Dr's today, and more than likely we will be off to Riley once again. Carter weighed 6lbs 3 oz when he was born. He now weighs 8lbs 3 ozs. The pictures make him look very big. He is actually small and has very skinny legs. I am to increase his feedings by 5ml each week, through his tube, so he can continue to gain weight. Right now he is doing ok, but they need to insert the feeding tube into his tummy if the feeds become a problem. He has a tape allergy, so we are constantly fighting an infection on his face. Most babies have soft baby skin on their fact, but Carter's is very rough, bumpy and irritated. We feed him every three hours through his tube, and it takes awhile to feed him and get him his medications.

I will try to update at least every 2 days, but sometimes I run out of time. Sleep is a luxury these days.

Please pass this website on to those on your mailing list. I received an email yesterday from a girl, that said she was worried about her Dr. before, but after viewing my video, she really was. She was going to call today and change her Dr. That made me feel good. I don't ever want anyone to go through this. Our lives will never be the same.

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