neurologists and neurosurgeons

Lately it seems that the more doctor visits we have the more confusion we gain. It's funny because you'd think that more doctors= more clarity, but unfortunately the opposite is true in our case.
Carson's lack of upper body strength and his left-arm preference has been our latest mystery for the past several months. After his MRI we visited with Carson's neurosurgeon to discuss these symptoms. He felt that although Carson has a chairi, syrinx, and tethered cord, none of these issues should be causing the problems according to the MRI. The following day we met with our newest specialist, a neurologist. We were relieved to hear that he felt Carson had no additional neurological problems to diagnosis. Instead he disagreed with our neurosurgeon; he believes that Carson's issues are a result of the chiari, syrinx, and tethered cord.
We have decided to get another perspective on the matter from another neurosurgeon but who knows how far that will get us? Is this the beginning of going in circles?
Perhaps I should translate some of this; sometimes I forget that not everyone speaks "spina bifida" :) SB typically affects more than just your legs or your ability to walk. Because of the initial lesion in the spine it can affect multiple areas of your anatomy. The chiari (which controls your fine motor skills) is located at the back of your brain and is connected to your brain stem. Carson has a chiari II malformation which I believe is caused by the spinal cord "pulling" on it. The chiari can cause problems or become "symptomatic" when theres not enough room in the skull for it. A decompression surgery is performed when a neurosurgeon determines that it is symptomatic and is suffering from lack of space.
A syrinx is hydrocephalus(increased fluid) of the spine. Carson has a syrinx near his neck. His neurosurgeon will monitor the size of the syrinx by doing routine MRI's. If the syrinx grows it means another surgery. Typically either an operation directly on the syrinx or a shunt.
A tethered cord typicaly happens at the site of the initial lesion. It is the build up of scar tissue adhering to the spine. Among the symptoms are changes in the person's physical abilities. The solution is a surgery to release the tethering. Unfortunately this can become a "maintenance" thing because more surgery= more tethering which means more surgery and so on.
Obviously the decision to operate is not taken lightly. Since Carson is not experiencing symptoms that are putting his life in danger it may not mean that surgery is the right choice. Hopefully our next doctors visit will mean more clarity and above all more peace with the decisions we are faced with.
On a happier note, Carson transitioned himself from the floor into a sitting position for the first time several days ago! He is also enjoying some of the new things were learning at therapy. Lately he has learned to climb onto higher surfaces like a step, pillow, low toy, or a lazy grandpa laying on the ground :)He has become quite ambitious with this new skill. Sometimes I catch him trying to climb onto his floor heater which is about 18" off the ground. It's funny to see him eyeing objects determining if he can conquer them! I don't think I'll ever relate to the mothers who complain that they spend their days chasing their toddler around the house trying to keep them from climbing things and getting into stuff their not supposed to. I cannot wait to chase Carson!

Marathon Update!

Hello everyone,
I think it's about time for an update as we have a lot to share! We have completed our first session at the conductive learning center. The class lasted 3 weeks and went rather quickly. During the course of the class Carson improved in many areas. He gained alot more strength and although he doesn't sit completely steady he is getting closer. He also has gained speed with his crawling which is exciting to see. His biggest improvement in my opinion is his ability to stand with more confidence and his ability to steady his body against a surface using his arms and hands. Today I was reminded by this new milestone when I was preparing some food for him in the kitchen. Instead of laying him on the floor, I helped him into a standing position. As I prepared his lunch he stood holding onto a drawer for the entire time! Not only did he stand without falling, but he enjoyed it as well. We have worked incredibly hard for this blessing. It sure makes you thankful in a new way for these milestones!
I wish I had only positive updates, but unfortunately we were recently discouraged to learn that it was time to catheterize Carson. We were hoping that we wouldn't have to deal with this until a few years from now, but Carson's hydronephrosis (fluid in the kidneys) has gotten worse so we're hoping that cathing will help. It was overwhelming at first, but now it is part of our routine. The hardest part, in fact, is that Carson is always full of energy and cannot lay still during the cathing. This makes it tricky, but it is always fun to see his legs kicking! One of the risks with cathing is the possibility of UTI's and today, sadly, we learned that Carson has his first infection. Since we caught it early we're not anticipating fevers so please keep him in your prayers!
Friday we had another MRI. Somehow the hospital expects you to arrive 2 hours before the procedure to sit around with a hungry, crabby baby. Nate and I were dreading the day, but Carson did surprisingly well! I know alot of you were praying for him that morning, thank you! Since the MRI was 2 hours he had to be sedated. He was upset and out of sorts when he woke up, but he quickly recovered and was his normal self again in no time.
Today I received the tentative results. We're excited to report that there has been no change in his chiari, hydrocephalus and syrnix since his initial MRI in August! This is very good news. We'll talk more in depth about it with his neurosurgeon in a few weeks. I hope he is pleased with all he finds.
Lately I have felt some new anxiety over a new specialist we will soon be adding to Carson's list. Since Carson is not progressing well with his upper body strengthening we have decided that it is time to see a neurologist. Hopefully we'll get some answers as to why he is lacking strength. I am nervous and eager, please pray that we'll solve this mystery and overcome whatever the new challenge is!
And now for the biggest news: Carson turned 1 last week! I blinked and suddenly a year went by. The day was more emotional than I thought it would be. I cannot believe all that we have been through in a years time. We are so thankful for Carson and all that he is teaching us. And we are grateful to God because he has provided EVERYTHING we have needed. A year ago the thought of not only raising a baby, but a baby with special needs was stressful and overwhelming. I felt inadequate for the task (and still do!), but I am always reminded that God provides everything that we need (and in our case even more than what we need). He has given us the resources we need for Carson's medical issues, the finances we need to afford it all, the intellect to understand and react, and an awesome and supportive community filled with people who pray for us, encourage us, and even new friends who are going through the exact same thing.
Please continue to keep us in your prayers, we have been blessed by them.

Conductive Learning Center

We have survived our first week of conductive learning! As I have mentioned before, we are enrolled in the parent child program at the Conductive Learning Center- a 3 week intensive therapy session for 2 hours a day, 5 days a week.
Prior to our class we were warned that it was exhausting for both child and parent which proved to be true! By the time class ends I feel that I have spent my whole day’s worth of energy and it is only 11am. But, although exhausting, it has been productive.
Conductive Learning is hard to describe. It is based on the belief that the body can reroute messages from the central nervous system through alternate paths. In other words, if there is nerve damage they believe that an individual can learn new ways to pass messages from the brain to certain muscle groups. Conductive Learning originated in Hungary and is gaining popularity worldwide. The program is known for its success among people with cerebral palsy, but their methods have benefits for people with spina bifida as well.
Carson and I have done multiple types of therapy and there are a lot of things that are very different about the Conductive Learning Center. So far I love the approach they take. They really take into account the “whole body” and well being of the individual. There is also a lot of emphasis on the verbal aspect of the therapy. Although Carson is only 11 mo old it is not uncommon for the conductor to say something like “You do it, Carson. Come on, lift your leg, touch your toes, crawl over here…” Obviously he cannot understand every word, but the repetition of this will help him start to follow directions, and activate him physically.
There are only 4 children in the class and 3 of them have spina bifida. Among them are his friends, Greyson and Whitney. I think it freaks him out a little bit being amidst the chaos of multiple kids, but I think he enjoys the activities and the other children as long as they don’t get too close to him. Eventually the peer pressure of other kids excelling physically is a good way to motivate. As for me, I enjoy the company of the other moms. It’s awesome to cheer on the kids. One of the bonds I think we share as moms is the pride we have when we see one of the kids succeed.
The past few days have been especially exciting for our family because of Carson’s latest milestone achieved. After months of hard work he is “crawling.” I don’t mean in the traditional sense, but he is moving his body forward to travel to a toy so that counts, right? We are so proud of him!

The Art of Thanksgiving

For us the holidays will be more meaningful than ever. As all of you know we have had quite a year! Although our newest family member brings us tons of joy it has been a rocky journey. Looking back on the year brings me mixed feelings. Yes, I feel joy, love, and all the good things, but also a lot of pain, doubt, and tragedy. My pregnancy was not a time full of blissful anticipation, there was a lot of pain and worry. I remember envying surrounding pregnant women at Babies R Us as I registered or watching families with young kids running and playing outside and feeling like my life would never be that carefree (which is foolish of course! Who is to say that these people never had any of their own problems!) At one of my showers I remember my Aunt Kathy telling me that you've got to pray for strength because Satan tries to rob you of your joy. She doesn't know this, but those words really resonated with me. "Robbed" was exactly how I felt. In fact, it was consuming. There were times when I felt so robbed and entitled to what I didn't have that I would forget about all the miracles that God was doing in Carson's body, all the prayers and support from my surrounding community, all the mercy God was showing us, and all the things He provided I never even knew I needed.

Even today it's easy to slip back into those familiar feelings of doubt and mistrust. I don't know what Carson's future holds, and what issues we'll need to overcome. But I do know that being thankful is not circumstantial. It's a choice. Will I decide to feel robbed of things I think I deserve? Or will I choose to be thankful? When you focus on the blessings you realize just how thankful you can be.

Through Carson, God's gift, I have new convictions and passions. He has shown me a world that Carson's story can bless. God is good. This year I am thankful for so many things.

Photos taken by photographer, Ashley Malefyt. Check out her adoption journey at savingolive.blogspot.com

10 months old

I have to apologize for being late on some much needed posting. Everyone knows that the holiday season is a busy time, but with Carson on the loose it makes it even busier.

We are beginning to prepare ourselves for our first "therapy" session at the Conductive Learning Center. This place is difficult to describe, but it's kind of like physical therapy with a different type of approach. In fact, it is quite controversial especially to doctors and some other therapists. Yet I've heard a lot of good things about it particularly from parents whose children are enrolled. During December Carson and I will attend a 3 week intensive program. We'll be there every morning for 2 hours, which I'm told is tiring (for both parent and child) but also productive. Since it is a group session we'll get to see Carson's friends, Greyson and Whitney, and their moms of course:) I am excited to begin and hoping I won't be disappointed!

This past weekend we also journeyed to Livonia for a Spina Bifida Conference. For the first time ever we spent the night away from Carson. I was incredibly nervous that he would freak out, but he had a great time with his Grandma and Grandpa. I was told when I returned that he loved the bakery. Hmmm, I wonder what they fed him?

Anyway, the conference was great! It gave us a chance to meet and hear from new people. Some of them were adults with SB and it was incredibly encouraging to hear about their lives and careers. We ate lunch with a woman, Katie born with SB, who was married and gave birth to a healthy child three years ago. We had a great time traveling with Andy and Leigh. It was fun experiencing our first conference with them as we have gone through so much together already!

This past week we visited a new eye doctor. We had mixed feelings about our original doctor and upon leaving our appointment we were so glad we trusted our gut! Our new doctor found that Carson's current lens prescription was not near as strong as it should be. We'll be receiving his new glasses next week and hopefully we'll finally start to see some improvement! She also concluded that the eye patching is not necessary at this point.

Halloween was tons of fun with our little guy. We hope you enjoy the photos!

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