Hi friends! As you can see, I’ve taken a bit of a break from the blog lately. Do I even have any readers out there? We had a pretty nice winter and spring. Leah continues to learn and grow, and each day is something new for her. But I will say that 4 has been the hardest age so far. 2 and 3 were a breeze, and now that she’s 4, she’s testing the limits a lot more. I’m getting reports from school that she’s having a tough time with social interactions as well, things like hitting or saying mean words to others. It’s coming from a place of frustration, she sees other kids get up and move around much more quickly than she can, and she can’t defend herself when they take something that she wants. She’s trying to exert control over things, like choosing not to participate in a song or game for no other reason than she doesn’t want to. It breaks my heart just a little bit to hear her say that friends didn’t want to play with her, or that she doesn’t want to go to school. Our teachers are trying to work with her on things she can do or say that will make her feel better. The school offers mental health therapy, so we have her meeting with a therapist once a week to help her deal with some of these feelings. It’s been great because the therapist talks with her teachers about how she’s doing in the classroom and they can set goals with each other. And the therapist picks her up right from her room, so one less appointment that I have to take her to! As difficult as it is in the moment, I also have to remember that her behavior is very normal. Isn’t that what we wanted? A child who is so normal on every other front, and her frustrations are a reasonable output of her situation. She knows she’s different, she is starting to understand that she gets around differently and she has to process those feelings and emotions. I have to remind myself of that when I want to wring her little neck for sassing back at me. Ahhh, serenity now!
Back in January, she had a Spina Bifida checkup. The usual suspects of urology, rehab, physical therapy all came in for evaluations. She had grown out of her old Hip-Knee-Ankle-Foot orthotics (HKAFO’s), so I wanted to get her a prescription for a new pair. They looked at her hips and legs, and everything is checking out good for now. Her skin looks great, so no pressure sores or breakdown of her skin. That’s something that can lead to infections and issues, so it’s important to keep her skin healthy. Her hips also look good. Again, hips are known to be an issue for kids with SB, and right now hers are still staying in the sockets. They do pop every once in a while, so we’ll continue with yearly hip x-rays to check them out, though it’s pretty hard to fix a hip issue easily. We’re just happy that now we don’t have issues. As we were talking about the HKAFO’s, they recommended Knee Immobilizers, which are much lighter than braces and could be a better option for her to get back into walking. Unfortunately they didn’t work, as Leah needs much more hip support than they offered. The really unfortunate part is that I took them home and got her into PT in the hopes that they would work, but ultimately did not. Instead, here we are almost 6 months later and we still don’t have new braces for her. They will be ready next week but we wasted a lot of time, and I’m really kicking myself that I didn’t get moving on it quicker.
We also did new urology studies while at clinic, which put us on a new path when it comes to bathroom management. She had an ultrasound done on her kidneys and bladder, which showed quite a bit of reflux. That’s not good because the kidneys should be sending pee into the bladder, not the other way around. So we had more intensive studies done to see the extent of the reflux. It showed that her reflux was pretty severe in the left kidney. Her urologist has always told us that her health is his job; her social continence is our job, so he had to step in because she can’t have that severe of reflux for a long time. That was hard for us to hear because for so long, things were looking really good in her body. We knew that we had to do something immediately to correct the reflux. He gave us a few options. First, we could have a surgery done called a vesicostomy. It is where he would cut a hole in her bladder and she’d leak excess pee out of that hole. That would clear up the reflux in a matter of days. Then, after a period of time, it could be reversed and closed back up. We initially thought that would be a great solution, until we realized that the hole would extend externally to just below her belly button. Not a great solution for a 4-year old who is trying to get OUT of diapers, and not wanting to leak pee all over… which is what we found out is the reality of this procedure. ICK! But again, we have kidneys on the line here, so this was seeming like a viable option. Second, we could insert a foley catheter, which is a permanent catheter and continually drains pee out of the bladder. It would need to be changed weekly, and she’d have to double up on diapers, as it also comes with extra leaking. Again, not idea for a 4-year old who wants to get OUT of diapers, not into more. Our third option was a long shot. It was to put her on a medication to expand the bladder so it can hold more pee and do intermittent cathing, which means cathing every 3-4 hours. If it worked, her reflux would clear up AND she could start transitioning out of diapers. After a lot of debate, we decided to open door #3 and do intermittent catheterizing. Again, a long shot and we had a pretty severe case of kidney reflux to fight, but we agreed that we would try it and go to a more aggressive option if it didn’t work. I’m happy to report that it was the right thing to do! After a month of being on the medication and doing the intermittent cathing, the reflux went away completely and her kidneys look normal. What a relief!!! We’ve had to adjust medication and dosing to find what works, but she is pretty much totally dry during the day.
The other thing we started was a bowel management program. I’m not going to get into great details here because it’s kind of gross and it’s very private for her. We were able to get approval from insurance to use the Peristeen method of cleaning out her bowels. Look it up online if you’re curious. It entails sitting on the toilet for about 30 minutes each evening, and she is able to get totally cleaned out. That process was purely for social continence. She could have gone her whole life without doing that, but eww, gross. We all wanted her to stop having poop in her diaper during the day. It took us about a month to figure out the system to get it totally right, but now we have a nice routine down, and she’s been (mostly) accident free. I’m not ready to give up diapers altogether but she can now make it through the day in a pull-up. And just like that, she’s (mostly) potty trained.
In other fun news, she is playing on a t-ball league for children with special needs. This league is awesome, and they provide buddies to all of the kids. Each game they are paired up with a high school volunteer who helps them hit, run and catch. Mostly, Leah just likes being out there socializing! As I was sitting there last weekend on a beautiful sunny Sunday afternoon, I watched with such pride and happiness. There I was, in the stands, while my little girl was rolling around on the baseball field, like any other kid her age would be doing. What a wonderful gift for me and the other parents to be able to sit and cheer them on. I could actually have a conversation with the mom next to me, all while knowing that she’s being looked after and having the time of her life. Her favorite part was getting a popsicle after the game, of course. I know that we’ll never be a normal family. It takes extra time and effort for us to do many things, and some things are quite impossible for us to do at all, but I had a glimpse of what it’s like to be normal.
