One Crazy Week!

This past week has been a bit tough. Last Tuesday we we're instructed to take Carson the ER because of vomiting. Taking someone to the ER because they're throwing up may sound a bit overkill, but when your dealing with a person who has Spina Bifida it could be much more serious. Vomiting can indicate a neurological issue which needs urgent attention.
On our way to the hospital I thought that we were finally at the beginning of more surgery. I imagined that Carson's neurologist would have to arrive and suddenly perform a scary surgery of some sort. I was terrified! I hoped that Carson's diaper bag contained enough supplies and toys for what I thought would be a several day stay.
Thankfully we were released from the ER several hours later. The doctors believed that Carson's vomiting was most likely due to a stomach bug of some sort (Even though he had no temp. and was his normal self).
Yet, almost a week later and Carson's still throwing up almost daily. His pediatrician feels that this is probably simply Carson's new norm. As long as his wet diapers and weight gain continue, she is not concerned.
Of course I am relieved that were not looking at surgery or infections, but I still can't completely shake the fear. Please pray that Carson will cease vomiting and wisdom for myself and his doctors.
On the bright side, Carson will finally receive his standing AFO's early Oct! AFO's are plastic and velcro ankle braces designed to help with standing and walking. Carson loves standing upright with help from Nate and I. I hope he'll be eager and excited to try it in his braces!

8 Months Old

It's hard to believe summer is over; time is just flying by. I also cannot believe that my little guy is already 8 months old! Sometimes I wish I could hang on longer to certain days and just savor them. Carson sure is keeping us busy!

After a few weeks of constantly yanking off his glasses, Carson finally seems to have made his peace with them. What a relief! He pretty much leaves them alone. Our next goal: Getting him to actually look through them instead of over them like an old man.

Carson is still continuing with physical therapy, but starting this fall he'll be doing a lot more of it. He'll receive therapy through Early On, Mary Free Bed, and also a group class. We're also considering taking a swim class and a session at the Conductive Learning Center.

So what's new in Carson's world? He is mesmerized by his feet. Nate and I are thrilled that he has the strength and flexibility to reach them. Carson is also sitting up; he's not completely sturdy yet, but he's getting pretty close. He's certainly progressing, but the area he has always thrived the most in is eating. Carson now eats chunks of food like meat and loves it! He'll eat anything in his path with little trouble and washes it down with sips of water from a glass with help from his mom. The other day Carson and his dad ate sizzler steaks, yum:)

Wednesday we had another head check with the Neurosurgeon and everything still looks stable. There is still concern about Carson's lack of upper body strength. We're hoping it is something we can work through with physical therapy. There is a possibility that his syrinx, tethered cord, or chiari malformation is causing it which would lead to a surgical intervention. For now all we can do is watch and wait. His next MRI will probably be January.

Glasses

MRI Results

Last Friday we headed to the hospital for an MRI of Carson's head and spine. The MRI was ordered by Carson's neurosurgeon who requires all of his patients with SB to get an MRI around 6 months of age.

Naturally we were very nervous for the MRI and even more nervous for the results. The MRI was hard because we pretty much had to starve Carson before the procedure because they had to administer anesthesia. During the MRI he had to have a ventilator down his throat which caused discomfort afterwards. That, mixed with the anesthesia , produced a very disoriented and unhappy baby. The whole ordeal took 6 hours.

Wednesday we meet with the neurosurgeon to discuss the results. The MRI showed the issues we knew about (stable hydrocephalus, a tethered cord, and a chiari malformation) and also a new issue. Near the top of Carson's spine the MRI showed a syrinx (a pocket of fluid). Currently it is not a threat, but if it continues to grow an operation will be needed. In 4 months Carson will have another MRI to monitor the size of the syrinx.

Unfortunately there is no easy path for operating on a syrinx. Eliminating the pocket of fluid could mean a shunt, a chiari surgery or a tethered cord surgery or a combination of several surgeries if the first one doesn't work.

We are also closely watching Carson's right arm as it is showing signs of weakness. It's possible that the weakness is related to a chiari problem (an area of Carson's brain affected by the SB). We are currently watching for more symptoms of a chiari and hoping, again, that it doesn't lead to surgery.

After the appointment we were wiped out. There is so much anxiety and stress leading up to these appointments. We never know if we're going to hear good news, or schedule a surgery. Carson's MRI wasn't the best case scenario, but it also wasn't the worse. We are thankful to avoid surgery for now. Please continue to keep Carson in your prayers. Pray for God's continuous mercy on Carson.

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.