Wednesday, April 22, 2009

Aliens and Spaceships

We're happy to inform that after two weeks Carson is finished with his castings. Although we we're happy that that phase ended we have now moved on to a new one. The casts are now replaced by AFO's (ankle braces). 18 hours of the day Carson wears his plastic and Velcro braces decorated with aliens and spaceships (pretty eighties looking actually!). When he's not wearing his braces we're stretching his feet still trying to increase the flexibility. Ultimately the braces will hopefully keep Carson's feet positioned at a normal angle to help prepare him for walking someday hopefully.
Carson again doesn't seem to mind his alien covered footwear, but as always these types of things are harder on me. The braces are a constant reminder to me of Carson's challenges. It's hard to believe that Carson will be wearing these types of braces for the rest of his life. It's starting to sink in that we're on the brink of a long journey.

Recently we also visited Carson's urologist. Carson was born with hydronephrosis, an enlargement of the kidneys. We discovered that at this appointment one of Carson's kidneys looked fine and the other had decreased from a level 3 to a 2 which is better. Hydronephrosis can be fatal so obviously we are monitoring his levels. We still don't have an accurate idea of Carson's bowel and bladder issues but the doctor told us to be prepared for cathing instead of potty training. It kind of makes you thankful for changing diapers for now!

Nate and I also visited the Spina Bifida support group meeting for the first time the other week. Although we weren't sure what to expect we were surprised to see only several people there. Besides Nate and I and our friends, Leigh and Andy, there were only 5 other people and 3 of them were the board members. They explained that their group was kind of in a transition phase. Since the SB National Assoc has set new guidelines, their board must grow to 8 people and raise about 4 times the amount of money they generate currently. To make matters even more challenging, the only 3 board members are burnt out and ready to pass their responsibilities on. It was discouraging to see this support group almost completely dissipated and overwhelming to hear what the group was going through! But Nate and I felt surprisingly motivated afterwards. Maybe we could help this group flourish.

Next week brings another head ultrasound to monitor hydrocephalus. Please continue to keep Carson in your prayers!

Monday, April 13, 2009

Carson's New Boots

Today Carson received his second set of casts. He'll receive a variety of casts and braces designed to increase the flexibility in his ankles. Currently his foot is unable to flex to a pointed toe position. We found that the casts are doing their job quite well. When we removed the first set which was put on last Monday, he had greater flexibility. It's going so well that his doctor decide to reduce the duration from four weeks of casting to only two!

Carson handles his casts pretty well. In fact, he did a lot better than I did at the last appointment. Watching a group of doctors bind your baby's legs up into casts is hard to watch, but Carson didn't seem to mind. Throughout the week it seemed that he didn't even realize he had them on. The hard part was actually removing them. The machine used to cut the casts off is alarmingly loud especially for a baby, and after we washed his legs they became irritated from the soap or the scrubbing. As Carson sat on my lap crying in discomfort I tried to remember the last time I felt so helpless. He finally started to settle down and just stared at me with the saddest blue eyes I have ever seen. If it weren't for Nate, the reasonable one, I probably would have climbed out the window with Carson and escaped:) Regardless, this is his last week in casts so it isn't so bad.

This week we'll be visiting with Carson's urologist for the first time since Carson's birth. Most people with spina bifida lack bowel and bladder control in varying levels. Since Carson is obviously still a baby I'm not sure what we'll be able to learn.
Carson as always, is a busy boy. Not only from the endless appointments, but he's on the go a lot with his restless parents. Nate and I are so anxious for summer we have already been golfing several times. Carson's eager Grandmas are always willing to take him while Nate and I hit the golf course. We hope someday that Carson will be able to enjoy sports if he chooses to play them. For now we're just focusing on the day to day things and enjoying our little guy!

Saturday, April 4, 2009

3 months old already!

Good news to report again! Carson had another appointment with his neurosurgeon, Dr. Foody, on Wednesday. Dr. Foody determined that Carson's ventricles still look great and there is no need for a shunt yet. The next appointment to check his head again isn't until the end of the month so that gives us some time to relax about the matter.
Next week we'll be seeing Carson's orthopedic doctor again. Most likely he'll have to have casts put on his legs for the duration of this month and part of May. The casts are needed because Carson's feet turn upwards due to the lack of working calf muscles and tendons. The casts will gradually stretch his feet to a normal angle. The Doctor assured me that the casts do not bother babies at all. I hope she's right, they look like such a burden.
I never realized how overwhelming it is having a family member with special needs. There are some days where I feel like everything is smooth sailing and then other days when reality seems to hit me full force. But amidst it all, Carson is smiling and there is no greater blessing than helping him make day to day progress despite his challenges.
I'm always encouraged remembering what my mother-in-law said recently, "We know that God is good. He is incapable of doing anything but good. But God defines "good," not us. Our definition of good and God's may not look the same here on earth, but we can be confident that God has the best plan in store for Carson."