A few updates

This morning we went to see Carson's eye doctor again and we weren't quite sure what to expect. Carson has been wearing is glasses for several months now and we haven't noticed huge changes or improvements with his vision. He doesn't seem able to see past 5 ft and his eyes still cross. The doctor concluded that the glasses were indeed helping, but not as much as he had hoped. Our new plan is now patching in addition to the glasses. For 2 hours a day we must place a patch over one of his eyes (alternating each eye daily) until we see his eye doctor again in Jan. Now I suddenly feel back to square one- constantly putting his glasses and eye patch on again and again as he constantly removes them again and again. There is a possibility of eye surgery in Carson's future if we don't see much improvement again.

Last Friday we went to the Spina Bifida Clinic and saw a few more of Carson's doctors. His neurologist determined that Carson's chronic vomiting was not neurological. Even better, Carson hasn't thrown up in 2 weeks so we're all feeling a little more at ease!

Carson's orthopedic doctor feels that he is doing great and is ready for a "stander," or a device designed to keep him upright while he wears his AFO's to help him learn standing. We have been practicing standing without the stander (we don't have this device yet) and he does great! So our doctor agreed that he can practice standing both ways.

Currently Carson is enrolled in a swim class at East Hills with his buddy, Greyson. He loves the water and is doing great in the class. It's refreshing to have just a normal non-medical routine in our week!

We're also excited to share that we're hearing a lot of "da-da's" and "ma-ma's" from our little guy! Somehow he only says "da-da" when he's excited, and "ma-ma" when he's whinny. Hmmm, we're going to have to work on that!

Support a cause, buy a hat!

My friends, Karl and Ashley Malefyt are raising money to adopt a little girl, Olive, born with Downs syndrome. They are currently selling hand made hats to help raise funds. Please take a look at their blog and send them some support! savingolive.blogspot.com

9 Months Old

Big things are happening in Carson's world; his first tooth finally made it's debut! There is nothing more adorable than a baby smile with a little tooth peeking out:) I'm considering all of us quite lucky because the whole teething ordeal so far has not seemed too painful (although the biting of curious fingers is another story- those baby teeth are sharp)!

On our previous post I wrote about the sudden vomiting Carson is undergoing. Out of the blue he started throwing up almost daily (sometimes twice a day). This has been a frustrating and scary time for us. He finally stopped throwing up last Tuesday and I thought maybe somehow it was over. Just when I was starting to relax about it he threw up again today. This Friday we'll be seeing Carson's neurosurgeon; hopefully he can give us some insight into this problem.

Last week we received Carson's new AFO's, or ankle braces designed to help with standing and walking. It's exciting to be moving towards this direction, but I have to admit that it was hard seeing them on his legs for the first time. Sometimes the reality of Spina Bifida just hits me in different ways. There are days where I feel in over my head and overwhelmed with the struggles of SB. Those days are hard, but more importantly, there are many more days that I see miracles happening right before my eyes. God is good!

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.