4 Months Old!

For the first time in his life, Carson finally left Grand Rapids and ventured out to Lake Michigan. On Sunday we celebrated Nate's mom's birthday in Grand Haven . Before we left I gathered all the things I could think of that Carson might need; baby things may be small, but boy do they add up! Our car was packed to the brim by the time we left. When we arrived Grand Haven was surprising warm (eliminating the blankets, hat, and sweatshirt I packed for Carson). I doubt Carson ever realized that he was anywhere significant, but we had a lot of fun taking him around to all the sights.

More familiar to Carson of course was his check up again with Dr Foody, his neurologist. We were pleased to hear that Carson's head ultrasound looked great. In fact, Carson won't be back for another head ultrasound until July!

Recently Nate and I got to hear Carson's first baby laughs! It was probably the most adorable thing I've ever seen/heard. Adorable and slightly awkward; think Goofy's laugh but in a baby's voice:) Ever since the first set of laughs we've been trying to get him to do it again. Apparently we're not funny enough; he doesn't laugh often, but he sure gives us lots of smiles so we're thankful for that!

Please keep Carson in your prayers this week. We're visiting his eye doctor again.

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!

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!

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."

11 weeks

As many of you know, Nate and I recently have had reason to worry about Carson's eye sight. His physical therapist and pediatrician recommended that we see an eye specialist. Carson seemed behind in his ability to focus on a face and track an object. So once again, Carson and his nervous parents headed out to another appointment. And once again we left the appointment relieved!

The eye doctor said that Carson's eyes seemed fine. He said the "cameras" are working, he's just not very interested in what he's seeing. I thought, well thanks, Carson, I can't get enough of looking at you. I guess it's not mutual! The doctor believes that it's due to some immaturities in the brain that still need to develop. As long as we keep stimulating his eyes he should begin to take interest soon.

This past week I felt that Carson was already making progress. For the first time he holds his gaze while looking at me and he seems to take more interest in his surroundings. It's finally starting to feel like he is visually aware of me instead of just reacting to the sound of my voice. It's strange to think that there is so much satisfaction in interacting with someone you've only known for 3 months who cannot even verbally communicate:)

Although Carson obviously cannot talk yet, his physical therapist thinks that someday he'll be quite the talker. She said that he's very expressive with his sounds. I would agree, expressive and loud!

The warmer weather has opened Carson up to a very new world. Like anyone who lives in Michigan, he seems very surprised to see sunshine. We have already used our stroller quite a bit and Carson seems quite content relaxing in it. I should mention that it's a jogging stroller so hopefully our walks will progress to a run:)

Wednesday is another dreaded head ultrasound. As always, please pray that the results will show a stable amount of fluid. Thanks!

Quick Update

This update is a few days late, but I just wanted to let everyone know that Carson's head ultrasound went great on Monday! It is always nerve-racking sitting in the waiting room waiting to hear the results; especially when the doc is an hour late! Of course it was worth the wait to learn that Carson's head is growing proportionally.
Our next appointment is in 2 weeks so please pray for similar results!

9 weeks

It's hard to believe that Carson is now already 9 weeks old (and now weighs 12 lbs)! I can't believe how quickly time is passing! Our frenzy of appointments is finally slowing down and we're starting to get a chance to just relax with our little guy, it's great!

Carson is moving along very well, literally! He has been working with a physical therapist every week and is gaining a lot of strength. Carson can already hold his head high while he's propped on his elbows. He also has learned how to roll over! This morning, like usual, we practised his exercises and he seems to love it. He rolled over again and again. He's a pretty determined little guy! The physical therapist always remarks how content and easy going he is. He is always willing to do his exercises and only quits when he is truly tired out. Carson's determination is an inspiration to me already. I think that someday he's going to be the one encouraging me on, instead of the other way around. It's already amazing witnessing Carson's ability to compensate for his weakness and conquer tasks in his own way.

Just when things we're starting to seem like smooth sailing a new concern came up. Carson seems to have difficulty seeing. Sometimes he makes eye contact but it's pretty rare. We're pretty sure he can see some things, but we're just not sure how much. Obviously we have a vague understanding so we're seeing an eye specialist at the end of April. For now, we'll keep trying to work on helping him focus on objects and tracking them.

Last Sunday Carson was baptised at Woodlawn CRC. It was a beautiful service and Carson did very well! He wore his Great Grandpa's baptism gown so it was very special (although my siblings kept calling him "Princess Carson")!

Like I said, we've been enjoying a relaxed week, but reality hits again on Monday- another head ultrasound to check Carson's ventricles for hydrocephalus. Please pray that the results show stable fluid amounts!