Looking Back and Looking Ahead

Carson and his buddy, Greyson, who was also born with Spina Bifida

It's hard to believe that six months ago we we're still anxiously waiting to meet our baby. We had no idea if he would be born kicking his legs or experiencing paralysis. We didn't know how long we would be making trips to the NICU to visit our baby after his birth, or what types of surgeries to expect during the weeks following his birth. Will he need a shunt? Shunt revisions? Will we leave the hospital only to return shortly for UTI's or other infections? Will our lives ever return to a sense of normalcy? Will God answer our prayers?

Looking forward and anticipating the future still brings loads of questions and uncertainties but also a new sense of confidence and trust. God has shown us such mercy and compassion. I cannot even express what a blessing Carson is and how many milestones we have reached. Dealing with Carson's health issues is still the hardest thing I have ever had to go through, but I am reminded by looking back that God's plan for redemption has never failed us yet. I know that Carson's future is in God's hands and that his life is going to be a testimony of God's goodness amidst struggle.

Last week Carson had appointments with all of his specialists. Again, he is doing very well. So far he still has no need for a shunt. His urologist was pleased to see that Carson has avoided UTI's and infections and his hip X-ray lent good news from his Orthopedic doctor.

Unfortunately, Carson is showing signs of weakness in his right arm. His neurologist is concerned that it could be a symptom of a tethered cord and chiari malformation influencing his cerebellum which controls fine motor skills. Fixing this requires a tethered cord surgery. Carson's physical therapist believes that the weakness could simply be from an imbalance of muscles in his legs influencing his upper body and which arm he chooses to use. Obviously we're hoping that this can be resolved through physical therapy. Were keeping an eye on it for now. We'll also be visiting Carson's eye doctor again because his pediatrician wasn't pleased with how his eyes are doing. Also coming soon is a scheduled MRI so we can get an idea of what's going on inside our little guy.

After Carson's appointments I feel challenged in a new way. There are always going to be things to worry about but if I preoccupy my mind with worries then I will miss out on enjoying Carson's miraculous life fast-forwarding before my eyes.

Almost 6 Months Old

Again I can write with more good news. Recently Carson visited the Spina Bifida Clinic for a general check up. We were pleased to learn that we can adjust the time Carson spends in his AFO's (leg braces). Up to this point he had been wearing them 18 hours a day. Last week they reduced it to only 12 hours a day. This pretty much means that the entire time Carson is awake he is AFO free! This news was a great relief and surprise. In the summer heat Carson's feet were pretty much permanently sweaty so it's great letting his legs air out all day long.

I'm also pleased to say that I don't have any other medical news because we have hardly had any appointments. It has been great getting a break from those but it almost makes it more nerve racking for the next ones. Mid July brings appointments with Neurology, Urology, and Orthopedics. Please pray for us as we prepare for these appointments.

Lately Carson has been working quite hard on all his physical therapy stretches and has also been up to eating new things. He has recently started vegetables which he doesn't seem to care for. I think he's destined to have a Cornell sweet tooth.

Carson is always endlessly entertained by his dad, the musician. Nate is constantly coming up with silly songs about Carson. No matter what music seems to always cheer him up. It's fun watching his personality emerge!

5 Months Old!

It seems that I am long over due for a new post. We have been quite busy lately so we have lots to share! As you can see in our photos Carson got his first taste of solids. We weren't really sure what to expect as we prepared Carson's first bowl of oatmeal. I assumed that he would be confused and that it would end up all over his face instead of in his mouth. After feeding him a few bites I was surprised to see him eagerly eating it. Although I was still right about the oatmeal ending up all over his face as well!

Recently my mom, sister and I took Carson to the Meijer Gardens. Carson is enrolled in "Early On" and they held a function at the Gardens. Carson could care less where we went, but we had fun taking him all over in his stroller. Carson is a pretty easy-going little guy. He's perfectly content relaxing in his stroller no matter where we go. My mom likes to always remind me how fortunate I am to have a pleasant baby, she claims she wasn't so lucky with me.

Another first was taking him up North to his grandparent's cottages. He was a very good sport about his not so comfortable looking life jacket! We could hardly stop laughing at him the entire time we were on the boat!

Not much is new as far as his appointments go. Carson will start additional physical therapy at the myelomeningocele clinic at Mary Free Bed so I'm looking forward to hopefully learning more about what were dealing with.

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."