Saturday, February 28, 2009

No Shunt Yet...

Yesterday I tried to prepare myself for some hard news that I thought was heading my way. Because of our last appointment with Dr. Foody I thought that I was probably going to hear that it was time for Carson to have a shunt surgery. Miraculously we learned that there wasn't enough significant change in his ventricles to do the surgery! Isn't it interesting when your surprised God answered your prayers?

We were also surprised to hear that Carson's next appointment to measure his ventricles isn't until 3 weeks from now. So I guess that gives us a little time to relax.

Carson is of course oblivious to all the medical fuss. His primary concern is pretty much getting his food when he wants it (which is quite a lot and quite often). Carson continues to pack on the pounds; he now weighs 11 lbs and somehow becomes more and more loveable.

It's pretty crazy how different my life is now! Everything changes. The other night Nate and I visited Brenda and Brandon, friends of ours who just had twins. Instead of showing up at 9 and deciding when and where we were going to go, we arrived at 7:30 and pretty much spent the evening feeding the babies with the TV on in the background. At 10:30 we wrapped it up. Quite different from my weekends leading up to Carson's birth! It sure is an adjustment, but change is okay. Carson is my world.

Saturday, February 21, 2009

A Visit to the Spina Bifida Clinic

Friday was a big morning for our little family- our much anticipated meeting with the Spina Bifida Clinic. Of course the night before Carson decided he didn't want to sleep so Nate and I did our best to try and focus on what the doctors there had to say. We meet with an Orthopedic doctor, a dietitian, a Physical Therapist, an Occupational Therapist, and a pediatrician. Most of their assessments on Carson were things we had already learned, but there were a few new bits of information.

The Physical Therapist confirmed that she believed that Carson would some day walk with ankle braces. Secretly I had always hoped that maybe he would exceed this and wouldn't need any assistance at all, but after meeting with her we know it isn't possible. Carson does not have calf muscles or the ability to build them. This means he'll need the ankle braces to help balance out his shin muscles and quads.

In the near future Carson may also need casts on his legs to help increase his flexibility in his ankles. The tendons in the front of his ankles are extremely tight forcing his feet upwards. We are currently working on exercises to help stretch that tendon so that his feet will rest at a normal angle. Hopefully if the stretches are successful he won't need the series of casting.

Overall Nate and I felt uplifted and motivated after his appointments at the Spina Bifida Clinic. It's easy to feel overwhelmed by Carson's special circumstances, but compared to what could have happened, Carson is well off. It puts it in perspective.

Also positive to report is Carson's baptism right around the corner; March 1 at 9:30 am. We'd like to extend an invitation to everyone- friends, family, and anyone else connected through our blog. We will be serving at least cake (but probably also a light lunch) following the service. The baptism will be at Woolawn CRC. This is not the church Nate and I attend (We're currently looking for a new church), but it's the church Nate grew up in and was also baptized at. Please join us!

We'd also like to remind everyone to please pray for Carson's appointment on Wed. Recently the fluid in his ventricles increased so he will be having a CT scan to take a closer look at his brain. It is likely that we will learn that he'll need a shunt surgery to relieve the fluid. Please pray that the tests will reveal a decrease in fluid.
Thanks to everyone for the prayers and support. We hope to see you all on March 1!

Thursday, February 12, 2009

Disappointing news...

Unfortunately we had a disappointing appointment yesterday. Carson's recent head ultrasound indicated hydrocephalus, a fluid increasement in Carson's ventricles in his head. Hydrocephalus is controlled by a surgically placed shunt in the brain. The shunt is attached to a tube which empties the excess fluid into the stomach. Because Carson had some extra fluid he now has an appointment in two weeks to get a CT scan. This will show a 3-D image of Carson's ventricles so they can better understand his situation. The CT scan will determine if Carson needs a shunt or if we still will undergo some more waiting and watching. If they decide that a shunt is necessary the surgery will be scheduled for the following week. In other words, it's a possibility that Carson will have this surgery in three weeks.
The idea of putting Carson through another surgery breaks my heart, we were hoping that when we brought him home it was for good. The surgery itself and what it could mean for Carson's life is also scary. Typically people who have shunts undergo shunt revisions throughout their lives. A shunt revision is a surgery to fix a clogged tube, or an infection. Some people need many revisions and some a few to none. We're told that if you don't notice the symptoms of shunt failure it is fatal.
We always knew that a shunt surgery was a probable possibility for Carson, but obviously we were hoping he would be one of the lucky ones who didn't need one; and of course it's possible that he still may be. Hopefully we will know in two weeks.
Nate and I always remark how fortunate we are to live in a country during a time period where these life saving measures are obtainable to us. We are so thankful that we have access to the things that Carson needs and that we can provide those things.
Please pray that in two weeks the CT will reveal less fluid and that Carson will not need a shunt.

Tuesday, February 10, 2009

Prayer Request

Carson's recent appointments have still been going very well. Next week for the first time we'll be visiting the Spina Bifida Clinic at Mary Free Bed where we'll be meeting with an Orthopedic doctor. We're a bit nervous for this one. We obviously know that there are problems with Carson's legs, but it's a different reality hearing about the specifics. We're praying that we'll leave this appointment uplifted from good news. God has shown us such mercy with the rest of Carson's appointments and updates, please pray with us that this will continue.
Our friends, Leigh and Andy who are pregnant with a boy with SB, will have their C section on thursday! They're extremely excited! Please pray that God will be near to them at this time of anticipation and that their baby boy will amaze them with his capabilities as Carson has with us. Check out their blog:

Wednesday, February 4, 2009

Carson the Chubster

Carson continues to surprise us. Today at his pediatrician appointment he weighed just over 9 lbs! I began to worry that he was gaining too much weight, was I contributing to the obesity epidemic? But my doctor assured me that this was wonderful news and that Carson is growing at not only an impressive level, but a healthy one too.
Carson's head size is also right where it should be, still no need for a shunt. We really hope that this continues!
This morning we visited Dr. Naum, Carson's plastic surgeon. He said that Carson's back closure looked excellent; normally the scar is a "cross shape," but Carson's is only a single line. He explained that this was due to fact that Carson's lesion was so small, and that he had great muscle and skin tissue to work with.
All these positive appointments have been pretty amazing. Since Carson's birth I have left almost every appointment in tears- the good kind.
As my grandma would say, Carson is such a trouper. He hardly cries or fusses and now sleeps in 5hr+ durations! As evident in his weight, he loves to eat and noisily chugs it down. Carson's getting chubbier especially in his face. Today I dislodged his pacifier which was stuck in his double chin, and his cheeks are perfect for constant kissing.
We're pretty sure he can't get any cuter!