A Few Months of Updates

Well needless to say I'm a bit late with an update on the life of Carter but life in our little world has been a bit chaotic since the last time I wrote an update. I found a new teaching job closer to home, Mike is now a partner in the chiropractic office he has been working in since graduating, and Carter is now a two year old full of life and is curious about everything he sees! I will try and breakdown updates as best as I can by months or events and not make this the longest post in history but there are no guarantees.

Summer was amazing. Carter and I had a wonderful time exploring, swimming, and soaking up the sun. When late summer arrived it was time to get back into work and for Carter to begin spending his time with a wonderful caregiver and her son. We lucked out with finding a great woman who is willing to watch Carter which is great for him because although day care was an option, it can get tricky if Carter ever needed to have a catheter or need other care in a center. It's something we are still learning ourselves but for now, we love the setup we have for him.

September & October

These months were pretty low key for Carter in the Spina Bifida category with no appointments, issues, or disruptions in our lives that deterred him from his growth. Carter continued to improve with his walking abilities, and walking independently, he grew with his vocabulary, and enjoyed visiting friends from out of town while tailgating for mom and dad's favorite team. Oh and did we mention, Carter turned two!!! He had an amazing 2nd birthday and was able to spend it with wonderful friends and family who came out to spend the day with him celebrating his life. We had a truck themed birthday and was once again, thankful to have the nonprofit, Icing Smiles provide us with a baker to make Carter's cakes; that's right, his baker made TWO cakes for his birthday and we are so thankful to Sabrina at Eclectic Cake Company in Brighton for providing us with these great looking and amazingly tasting cakes.

I think he had a good time... and got plenty of gifts

Birthday Cakes galore! 

Halloween with his cousin! 

November

November gets it's own month because Carter was busy in the Spina Bifida world. First, we found out that his physical medicine and rehabilitation doctor, Dr. Green, would be leaving Mott. She has been with us since Carter was 8 months old but luckily we were able to see her before she left and get some feedback on his care, where we would go from here, and who would begin to see him once she was gone. While at this appointment, we were told that Carter should get a new pair of orthotics and that the second pair would not go up as high but would be more for supporting his ankles as he walks. At times his ankles give out while walking and he tends to roll them a lot so having something to help support his walking has been beneficial. Dr. Green also and finally might I add, gave the approval for a wheelchair.

Carter's new orthotics. 

I know what some of you may be thinking "but he walks just fine, he doesn't need a chair" or "You said he was walking, why would he need a wheelchair?" All fair questions. Carter does walk very well and is very independent as a walker but he does not have the stamina that a lot of toddlers might have while walking. Imagine this, you're at the zoo and your child wants to get out of the wagon and walk to see the next animal so you let them out, hold their hand, and walk with them. For Carter, he would get out of the wagon, hold your hand, and it would take almost three times as long to walk to the same exhibit because he moves at a slower pace due to his ankle and the fact that he gets tired a lot faster than that of a "normal" toddler walking around. His doctors used to say, "Well he can be in a stroller when you go places that's not a big deal." Oh really? Have you tried to tell a two year old they cannot get out and walk around even though his cousins are? Yea, okay thanks for that. It's been tough sometimes to think about a wheelchair and we really don't believe that Carter will need it all the time or even for a long amount of time but for now, he will need it if he wants to walk for a period of time and gets tired or if we are at the zoo and he wants his own independence and I refuse to take away his independence.

While this is something that we are excited about his finally getting approval it does take some getting used to. I have been fortunate to connect to another mom who has a son with Spina Bifida and she write this amazing piece that has been helpful to not only us, but to friends and family to understand better. Please read below and the link to Heather's Facebook page about her son is below to click on too!

"Why getting my child a wheelchair isn't me “giving up on him.”


"In my son’s lifetime, we have only been told by 1 of his 15+ doctors that he would never be able to walk (just for the record, that same doctor gave us a slew of other incorrect, outdated information, and we haven't been back since that visit.) Noah's spinal defect starts at L2 and goes all the way down his spine, however he has full movement, full feeling, and has all of his reflexes. As nice as that is, the reality is movement, feeling, and reflexes are not the end-all and be-all of walking.

Muscle tone plays a huge part in mobility, and those with spina bifida are prone to low muscle tone in their legs. Noah has low muscle tone in his legs and even his core. He is a chunky little boy, just like his older brothers were (sorry for the crappy genetics, guys.) The difference between him and his brothers is that when they started crawling and walking, they stopped gaining weight and continued to get taller and leaner. Noah is also following this pattern (he is still the same weight that he was last year,) however because of his low muscle tone, it's taking him longer to build up the muscle and strength to walk. He is standing and cruising like an expert now! I, and his doctors, have no doubt that this boy will walk one day, whether that be with a walker, arm crutches, AFOs, SMOs, shoe inserts or independently. BUT the reality is that even when he learns to walk he will likely tire easily. Expecting him to walk an entire day at Disney is not practical or fair to him.

Even more than tiring easily, so much can happen to our children that can affect their mobility, whether this be temporary or long term.

You developed a pressure sore from your bracing rubbing against your skin?

No bracing until it's fully healed.

You just had spinal surgery?

No walking for 4-6 weeks. The list of examples can go on and on…


So why get a wheelchair for a two year old? Plenty of two year olds are still held everywhere they go!

Remember that muscle tone issue we talked about? Yeah, so that doesn't just affect his bearing weight, it also means that he can't help evenly distribute his weight when held. It's like carting a 30lb sack of potatoes everywhere. Noah has a brother that is almost 13 months older than him. Mason weighs 35lbs, and I can pick that kid up all day long without any pain. Picking up Noah for extended periods of time is hell on my back, and if I hold him too much I spend days in pain trying to recover.

Okay, well, why a wheelchair?

When is the best time to teach children a second language? As babies! Bring them up exposing them to that language and it becomes second nature. They will only remember a life speaking both languages and they won't struggle and fight to only use what they are comfortable with. I want Noah (and his siblings) to grow up knowing that the wheelchair is a valid mobility option. I want Noah to never remember a time that maneuvering a wheelchair wasn't a skill he had. Should something happen and he temporarily needs to use it full time, I want him to already be comfortable with it and not struggle with his mobility while attempting to figure out this “new language.”

While we are at home, we emphasize hard physical work to meet whatever his newest goal in PT is. If he wants to watch TV, he stands up while doing it. If he wants to play with the water table in the backyard, he will stand to do so. If he wants that piece of fruit, he is going to crawl or cruise using furniture to reach it. While at home we give him every opportunity to push himself. If we were to put him in the stroller or shopping cart while out, he would just be sitting there doing nothing. By allowing him to use a wheelchair while we are out he is able to work on core body strength, arm strength, coordination, cognitive development, social development, etc. He is learning a new language and having a blast doing it!

How can I be sad that my son is using a wheelchair when I can clearly see how happy he is and how much progress he has made since learning to use it?

The wheelchair is not me giving up on my son, it's me giving my son another tool in his belt to take on the world with."


Mr. Noah William- Facebook Page

Now, after having Heather explain that to you, we are currently waiting for Carter to get fitted for a chair and in the meantime we are starting our own research on what chair would be best for him. We got the call for his appointment in November and it isn't until January 30th. Following that appointment, it could take another 6-8 months to actually get the chair so it's quite the process but one worth waiting for.

On top of one of Carter's providers moving (which we have a new PM&R doctor but have yet to meet him) Carter has his annual MRI done of his brain. This gives us the chance to see how he is doing with his shunt and if there have been any changes. The last time Carter had an MRI he was a little more than a year old and it was a quick scan (about 3 minutes). This MRI would take much longer so he had to be semi-sedated which just means he was given some medicine to make him loopy or "baby drunk" so that he wouldn't move around as much or at all while he was getting the scan.

He did a great job with his MRI and then we met with neurosurgery. It was a great appointment! We were told that Carter's brain and the excess fluid he has looks great. There is a slight change on his left side with fluid but nothing that the doctor was concerned about and they told us that barring any shunt issues Carter doesn't have to be seen by neurosurgery or need another MRI for the next two years!!! Mike and I (and I'm sure Carter) was ecstatic about this news and although the shunt issue is very much alive (see December), this was a very big deal.

Shortly after his appointment with neurosurgery, Carter was seen by urology for his annual check in. This included getting his CMG which is a test where Carter has a catheter inserted and we check his bladder pressure so that he isn't exerting too much pressure and it affects his kidneys. Carter has done very well with this appointment in the past and it's usually the appointment we are the most nervous about. Thankfully, Carter was a rockstar yet again.

Through his CMG Carter's results showed that although he did exert pressure to empty himself, it was not at a level that is a cause for concern. His doctor had explained that his level was around 20 at the most and the cause for concern is at 40, so he is all clear. Due to the fact that Carter has never had a UTI or bladder issues he is cleared to not need a catheter for another year, so long as no UTI or bladder issues arise.

Now, we are still unsure what this means for potty training because we aren't sure if Carter's body will be able to "hold it" in order to use the bathroom. We are currently in the process of getting him on a bathroom plan in order to empty his bowels but even that takes some research and learning but it's something we want to start because the earlier Carter understands this schedule the easier it will be for him as he gets older and we start thinking about school.

Overall, November was successful in Carter's life with Spina Bifida; no neurosurgery MRI's for 2 years and no CMG or catheter's for a whole year, it was a good month of good news :).

December
December started off wonderfully with some great news from the Public Relations team at Mott Carter is officially in the lobby of Mott now! His picture was selected to be the first photo as part of a new display in the hospital. This display is to thank those who donate to Mott over the years and Carter's picture is huge! We are so excited that he gets to be part of this hospital in many ways and that we get to show off that cute face even more :). Here is a picture of Carter's poster as well as the entire display to see! 

The newest display in the lobby of Mott :)

December was quite a month, one we thought would be nice and relaxed but, that hardly seems to be the case.

Towards the beginning of the month Carter had his first temperature, which in all honesty, for making it two years and not having any fevers we were very impressed with. Now you might be thinking, so what it's just a temperature which for a "typical toddler" you would be correct. However, a fever is a sign that his shunt could be malfunctioning or getting infected. This only meant one thing... time to go to Mott again! Mike and I packed up the explorer and made our way to the ER at C.S. Mott Children's Hospital. Once getting there Carter was well taken care of and the series of tests began.

What was unusual about Carter's fever was that he had no other symptoms of being sick other than a temperature; he wasn't throwing up, had no diarrhea, nothing, just a fever and being very lethargic. After a couple of hours at Mott the doctors determined that Carter was getting the same thing that everyone else's kids seemed to have picked up in December which was great news for us! Again, it's either that Carter could be sick like everyone else, or he needs brain surgery, so being like "any other toddler" was good news for us. We packed our things back up, headed home, and although Carter did get sick, like all other children, it subsided and he got better by the end of the week.

We thought that would be our only scare for a while but again, silly parents, we had one more that happened just a couple days ago. Carter had just been moved from a crib to a toddler bed on Christmas Day and all was going well. On the 30th, he woke up in the middle of the night crying so I made my way upstairs to get him back to sleep. Little did I know, in about 10 short minutes puke would be all over Carter, his bed, and me. That's right, our little munchkin decided to let it all go and throw up everything he had in his stomach.

After getting both him and me cleaned up and changing our clothes I took him downstairs and soothed him until he fell asleep. I chalked up getting sick to what he ate for dinner that night. After a lot of hours of tossing and turning, Carter woke up and asked for some water. I took this as a good sign that he was asking for something and got him his sippy cup of water. Bad move. About 3 minutes after finishing his water, Carter crawled over to me, and once again, threw up on himself, the couch, and me. Luckily, it was all water and no food was left but still, not fun at 5:00 in the morning.

It was at this time that I thought something could be up. Carter didn't have a fever, wasn't tired or lethargic, just throwing up. This is another sign that his shunt could be malfunctioning so I changed our clothes, packed him into the car, and again, made our way to Mott.

This trip to Mott took much longer than the first, probably because as tests were happening Carter was only showing one symptom, throwing up. The doctors decided that he needed to have an X-Ray of his head and back as well as an MRI scan to be sure that his shunt wasn't malfunctioning. After a few hours of testing and waiting to hear the results, we were fortunate to hear, yet again, that the shunt (we named Desmond) was still doing his job and had not malfunctioned. We were told that it's possible Carter had at GI virus and had just gotten sick. However, I was told that I did the right thing by bringing him in and that it was a good thing to have brought him in to have those tests in order to check and make sure he was okay. I was thankful to hear this because it's tough sometimes to know whether or not you're doing the right thing or overreacting. I'm glad I took him in but having that reassurance was comforting.

After 7 hours of being in the ER it was time to go home. Carter and I enjoyed the rest of the day and weekend spending our time on the couch drinking Pedialyte, resting, and watching lots of Mickey Mouse Clubhouse. 

December was an eventful end to our 2016 year but overall Carter's year when it comes to Spina Bifida was a good one. For now we are enjoying our New Year and waiting for the wheelchair appointment towards the end of January, which will most likely be the next update. Happy New Year everyone! 

Carter LOVES Santa Clause.