We had a follow-up appointment for his arm with Orthopedics at Children’s Mercy on Wednesday. You know you have been to Children’s Mercy a few too many times when, before we get there, your children ask you to park in the yellow submarine level of the parking garage. Those of you who have been there a few times know exactly what I’m talking about. His appointment went well, however there was a slight slant in his arm where the break was healing. They said this happens sometimes when the swelling in the arm goes down and there ends up being too much room in the cast. They had to remove part of his cast and put a wedge in to move the cast up a little bit, which then straightened out the arm. It caused quite a bit of discomfort for him, but he took it like a champ. They ended up having to wrap the cast in blue fiberglass so he was pretty excited about that. We have another follow-up in one week.

Following this appointment, Chase and Roman had their 4 and 6 year well-exams with their pediatrician. Roman is right on track with everything. We discussed again how we are all still surprised that Roman was diagnosed with BMD and has the exact same deletion as Chase because you would just never know it. Roman also started Taekwondo a couple weeks ago and couldn’t be more excited! He is doing so well, continues to be so strong, and he is very excited to start preschool in two weeks.

Chase, however, has some more issues we needed to address.  He had been complaining that he can’t hear his sound machine at night, and wakes up screaming sometimes because it scares him when he can’t hear it. They checked his hearing right there in the office, and to my relief, he completely passed the test! Now I can with 100% certainty know that he DOES hear me, even if he acts like he doesn’t sometimes!! His vision test came back at 20/40 so I will need to follow-up with an eye doctor. This didn’t surprise me because everyone in our family wears glasses, I think he will look pretty handsome 🙂

There is one more serious issue that he has been struggling with for a long time. I don’t want to go into too much detail and embarrass him, but this caused his pediatrician to send a referral to the Gastrointestinal Clinic at Children’s Mercy. Basically they are concerned that there are some nerves in his lower intestines that aren’t working properly. The testing would involve probes and rectal/intestinal biopsies. There is a possibility that the nerves have deadened a bit simply due to constipation. A child can get so constipated that it can stretch out the colon and it can cause nerve/sensation loss. We have, however, taken steps to try to combat the constipation and restore the nerves, but with no good outcome. His pediatrician is now concerned that he has a disease that causes there to be missing nerve cells in the lower intestines. Since they are completely missing, they cannot be restored. The only way to treat this is with surgery to remove the affected part of the intestines and reconnect the functional parts. 

When I got home after this appointment, I realized that it was this time last year when all of the testing started that led to his BMD diagnosis. We had his 5-year well exam, I expressed concern about some weakness and pain he was exhibiting, the pediatrician referred us to the rehab clinic for occupational therapy, and then all the testing, poking, prodding, and waiting started. The thought of him starting a new round of testing, after the year that he has had, and now dealing with the broken arm, my mama heart was just breaking.

I called the pediatricians office back to gather more information about this disease, and what can be done, if anything, if it does turn out to be the cause of his problems. I just didn’t want to put him through any more invasive tests if there really wasn’t a treatment. That was when I was told about the possibility of surgery. I asked what kind of risks would be involved, and basically the nurse said there are risks with all surgeries, but there are also risks if you DON’T have the surgery. We decided that since it will probably take awhile to get into the GI clinic anyways, we will try the regimen at home again and see if we get a better outcome. The nurse also gave me a few more steps that we didn’t know about to do last time. We will do it all this time around and hope and pray that it makes a difference. I thought also, since he is older, maybe I can explain it more to him and he might be a little more cooperative. Anyone with a soon to be 6 year old (or any age child really) knows just how uncooperative they can be when told to do certain things. 

We are going to give it a try, actually we started today and so far he has been pretty darn cooperative. I am feeling hopeful as the day goes on, but I am honestly still scared of it not fully working and having to put him through all of this. We have noticed with some of his behaviors and moods lately that it seems like he is really frustrated with his body right now. I ask that anyone reading this, please continue to keep him in your thoughts and/or prayers for the next couple weeks. Please pray that what we do at home works, those nerves can restore themselves, and poor Chaser boy doesn’t have to go through anymore testing. Thank you so much!!