19 Months and a Visit to Mott

Well, we officially made it a whole four months before having to make our way back to Mott for appointments and clinic. I am so thankful that everything has been going well with Carter’s shunt, Des, and that we haven’t needed a reason to make our way to the hospital. Carter has continued his physical therapy both with Mott as well as the Early On Program and has surprised everyone at therapy with what he can accomplish, but it was the doctors turn to see how things have been going since our last clinic in November. These are always long, busy days so I was very thankful to have Mike with us this time around.

May 19th was our clinic day and it was more of a check in with Carter’s progress because there wasn’t a need for tests to be taken due to the short amount of time he had had with majority of his tests (CMG in January, X-Ray’s in March, and MRI in November). We made our way to the 3rd floor, checked in, and waited for our name to be called. Fortunately, this time around, we decided to bring one of Carter’s toys with us where he can walk around the halls, and it paid off. Carter was totally in his element and loved walking up and down the halls and trying to get into other patients rooms too ;) which just meant that we met that many more Spina Bifida families and kids and Carter made some new friends!

At clinic we typically see Neurosurgery, Physical Medicine, Physical Therapy, Occupational Therapy, Urology, and now we also see a couple of people who deal with his medical equipment. We were in our room by 8:45 and out by 11:00 so it was a very successful day time wise but a lot of new information when it comes to Carter and his care.

First up was Neurosurgery and overall it was a great check in. Carter showed off his skills on pulling to stand, squatting, and then grabbing his walking elephant and walking right out of the room while we were talking to the doctor (he clearly was not interested in our conversation). He was very impressed with what Carter was doing and then asked us how he was doing developmentally and what we were noticing with his shunt. Developmentally we explained that Carter is actually above his age in almost all categories except for gross motor skills (naturally) and he was very happy to hear that.

 Carter's elephant chair and push toy we brought with us... Here he is pushing is cousin Eli!

 

We talked about his level of function versus his level of sensitivity and how we as parents should be trying to figure out the different between the two. We are aware that Carter’s level of function is pretty high as he can walk around without braces (needing something to old onto), but that his level of feeling might not be as strong. With Carter exploring more and becoming more mobile he also tends to get some cuts on his feet, and we mentioned that he doesn’t seem to feel these or respond to getting the cut or respond to us trying to clean and check it. We were told that we might not know about his feeling until he is able to tell us what he can feel and what he cannot. For now, we just keep trying different things like tickling his feet, rubbing the tops and bottoms of his feet and toes, and hope that he responds to our touch but for the most part, he only notices because he can see us do this. As he gets older we will obviously know more.

From there we asked the doctor about something that Carter has done since he was about 7-8 months old. About two-three times a day Carter tends to “space out” and it looks as though he is in a daze. One eye sometimes looks crooked while the other looks straight ahead. He never freezes when he does this (for example if he is eating he will keep eating but look “out of it”) and it was something that we wanted to ask about. We were told that it’s possible those little space out looks could be seizures. Now, as soon as I heard that I was terrified. How could I not know that those could be seizures and affecting him?

Luckily, the doctor made me feel a lot better when he explained that a lot of babies do that as they are learning how to wok different parts of the body, and the fact that Carter continues what he is doing when he spaces out (like the eating example) are all good signs. However, he did tell us that he wants Carter to be seen by Neurology just to rule anything out or to at least figure out what is going on. We have yet to hear from Neurology but were told that it was not an emergency situation and so long that his shunt is doing its job and he isn’t having a malfunction or infection all is well. The next time Carter would need to be seen by Nuero. Is in November when he needs his annual MRI.

After Neurosurgery we met with the team of Physical Medicine, Physical Therapy, Occupational Therapy, and our Medical Equipment peeps; it was a full house. Again, Carter wowed them with walking around with his toy. Dr. Green (physical medicine) had asked us if we could put Carter’s braces on him so she could see him walk around with the braces on. Remember, that at our last appointment with her she had said that he had Tibia Torsion so she wanted to see if his braces and twister cables (not really cables, more like Velcro that wraps from his waist and around his legs to his feet) were helping at all. After getting them on his feet (it’s like wrestling a Marlin) he walked around and immediately Dr. Green noticed that not only was it not helping his right foot and the torsion he had, but that the braces were affecting his left foot in a negative way too. She didn’t like that the braces seemed to slow him down and that she thinks he does better without them than with them. However, she did explain that because his right foot is not going to fix itself like she was hoping, another surgery is in Carter’s future.

Standing all by himself, checking out the construction outside :)

Dr. Green explained that this surgery isn’t something that would happen until he was at least two years old as both herself and orthopedic surgery would want to wait between the ages of 2-3. She told us that this is a painful surgery as doctors would have to break his bone, set it in the correct position, and then cast it. From there Carter could not bear any weight on his leg (because it’s not happening right now we didn’t go into detail about how long that would be), before getting into a boot, starting physical therapy, being fit for new braces, and then starting to use the new braces to help with his leg strength and possible walking independently. She told us that as he gets close to the age of two she would contact orthopedics and get us scheduled for an appointment to get the ball rolling. It was hard to hear that Carter would need another surgery, but ultimately we were happy to hear that once he has the surgery his chances of walking independently and having the strength to hold himself up would greatly increase.

After hearing this and going home Mike and I thought that it would be best for Carter if he had the surgery in the beginning of winter because he wouldn’t be missing out on being outside when it’s nice, I would have both Thanksgiving and Winter Break to be home with him, and overall we just thought that winter would be better off for all of us and hopefully give him the chance to heal, start physical therapy, and be ready for summer when it came. We still won’t know when exactly this will happen but understand that we will meet with ortho. In the fall.

Carter's first Tiger's Game, we can't have him miss out next season!



Physical Therapy and Occupation Therapy were very happy with his progress and we were told that for now, until his surgery and recovery he only needs to have PT once a month. He is crawling, climbing, standing, and walking with support and we are working with him at home so meeting once a week isn’t necessary. After surgery, a new schedule will be created for him as well as him getting his second set of braces.

While everyone was there we got the chance to talk to our medical equipment gurus and they had explained that because Carter is doing so well with mobility we can take his gate trainer apart and turn it into a mini walker that he can just push while he walks around, just like he does with his toys in the house. It was so nice to hear that we wouldn’t have to sit him in it because Carter had started to take that seat for granted and just sit and push his legs to slide around the room and not actually walk to get there (lazy baby haha). They broke it down for us right then and there and told us that if we ever needed to add anything back onto it we could because, thankfully, all of the pieces come on and off easily. They also told us that once Carter has the surgery and if he is walking well we could get an actual walker ordered which is much lighter and can fold, which his current gate trainer cannot and is SUPER heavy.

After all of the talk of mobility had ended and we had all of our questions answered they told us that we would be seen again in the fall and that we would be informed about our meeting with ortho. Until then, Carter was a happy, moving kid, and they were thrilled to see how well he does without any support!

Our last stop of the day was with Urology, the always terrifying check-in. However, this time around there wasn’t too much to worry about because he had done so well with his tests in January. We talked mainly about his bowel control, trying to figure out what dosage of Mira lax is best, finding that happy medium with the meds, and when to start a bathroom schedule. For those who don’t know, a lot of parents of kids with SB when they talk to each other, all conversations lead to poop, it’s just the way it is. There are so many kids who do things so differently and so parents talk to try and figure out what other people are doing, what they kids are going through, and new strategies to try for their own kids to help with this area.

I’m not going to lie, it’s a really hard thing to figure out and we are just in the beginning of it all; Carter will have a lifetime of trying to figure out what the right amount of meds are needed and what type of bathroom schedule to have, and these bathroom schedules are no joke. Kids start with a very strict schedule on when they go to the bathroom to help relieve their bladder or bowels without it becoming more of a health issue. Some kids need an enema once a day to help empty themselves because they can’t do it on their own, and that’s something that Carter might need. This can be done in the morning or before bed and creating a schedule and routine for these kids is extremely beneficial to keeping their systems as regular as possible while also staying healthy.

For now, Carter gets Mira Lax every night before bed, and before his baths he gets an enema so that way he can empty everything out and doesn’t have an issue of pooping in the tub (which does happen every. Single. Time if he doesn’t get the enema). Recently, we have been giving Carter the enema in the bathroom and he sits on his new toilet (kid’s seat) and will go there while we cheer for him and also tell him its okay if he cries because it hurts him, and believe you me, it does hurt him to go. As he gets older we will have to establish our own bathroom routine and decide what the best course of action will be but for right now, I just enjoy getting the chance to talk to other moms who have gone through, or are also starting to learn what this process is like for our kids. Not everyone wants to talk about poop for hours so it’s nice to have a support system and moms who are willing to talk poop because it’s a big part of what SB is an how it affects our kids.

Urology told us that Carter doesn’t need to be seen until November for another checkup and that his next tests wouldn’t be until that time or even in December but that with everything going so well in January he was good to go.

On our way out, I realized that so long as Carter continues to do well (praying always), we won’t have to go back to Mott for another appointment for another 6 months! It was such a relief that everyone was happy where he was at and that we could take a break for a little while. In November it seems like we will have some pretty big fish to fry with MRI’s, CMG’s, and meeting about another surgery but for now, Carter, Mike, and I are going to enjoy this sense of summer freedom and pray that we won’t be back at Mott until that checkup, which is good because Carter has a big summer ahead of him with bounce (tony tot gymnastic class and trampolines) class, swimming, physical therapy, and outings each week.

Summer… here we come!