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We haven’t updated you since March. If I can be honest…when your kid has been put under for multiple tests and the results are not what you expected, it’s a bit of a let down. The appointments are tiring and writing about them is a task I often avoid because it solidifies the reality! Today I’m ready though. I’m ready to share the last several months with you all, in hopes someone finds comfort or knowledge in our story.
In April, we got Brayden’s genetic tests results back. They were looking for anything that may come back from FMR1 gene (Fragile X) in hopes that would explain Brayden’s severe intellectual disabilities. The results came back normal. He has no extra chromosomes or deletions. Next, we completed the WES genetic test (where they compare the parents and the child’s genes). We won’t get those results until June, so for now, we wait again. Brayden also had an appointment with the neurologist in June. She said that she would order an MRI, but was pretty sure we wouldn’t get any big results from it. Really, this is all good news except when you’re grasping for answers or an explanation, it’s frustrating.
In May, we got a call that Brayden could start intensive therapy with Richmond Hope Therapy for speech and PT. Oh what a blessing they have been! They deserve their own post…something for y’all to look forward to! Brayden’s trial AAC (communication device) finally arrived from our appointment back in February. While it took us forever to get the device, I don’t believe it has to take that long. I’m going to work on publishing a resources page on our website soon that will walk other families through the process and help you all learn from our lack of experience, so you, or someone you love, doesn’t also go through the painful process we did. But, I digress.
June came in fast and didn’t disappoint. We received the genetic test results for whole exome sequencing and mitochondrial genome. Those results both came back negative for extra chromosomes or deletions. Again, fortunately and unfortunately. We also opted in to check for genes related to hereditary diseases and cancer. Those, thankfully, all came back negative. Brayden got his MRI and we received the results that afternoon. Since the genetic tests came back negative, we thought that this was going to show signs of a possible stroke that could explain Brayden’s left side weakness or diagnoses. However, there were no signs of a stroke, lesion’s, or tumors. The results did find that he has diffuse cerebellar atrophy though. This does explain Brayden’s muscle tone and his muscle weakness and how he fatigues after walking long distances. Timely enough, we also received Brayden’s stroller from our fitting in 2021. We use this as a tool for long distance walks/adventures, with the goal of keeping Brayden as active as possible.
Just like that, it’s July! We saw Dr. Kimbrough (pediatrician) who was impressed with B’s height and weight gain. He is still barely on the growth chart (1st percentile for weight, 5th for height), but we are getting there. Brayden had a check up with Dr. Rolin (physical medicine and rehabilitation.) who explained to us that Brayden may be plateauing as far as his gross motor abilities go. He explained that Brayden was at his prime around 6-10 years of age and likely has started to reach a point of no return. He encouraged us to keep Brayden active to sustain his ambulatory abilities. He even asked us what we thought about a wheelchair. Lindsay and I attended this appointment and were admittedly shell shocked at the question. We’d never considered Brayden would be anything other than constantly on the move. After time to process, we understand the doctor was only saying that carrying his increasing body weight may become more difficult and that someday he may need to utilize this tool. In the meantime, we enrolled him at our local River City Inclusive Gym where Brayden has started taking gymnastic classes with people of all abilities. They are an amazing non-profit and Brayden loves it there. Moving right along, Brayden also had a 6 month check up with Dr. Kuester with orthopedics this month. He did such a great job with X-rays to check on his scoliosis and legs. His scoliosis hasn’t progressed which is great news and hopefully will stay that way!! However, after our first set of X-rays for legs, the doctor came in and explained that she was concerned about his ankles because they pronate. They always have, hence the SMO’s but she also found that Brayden’s growth plates in both of his ankles are titled when they should be straight. After a second set of x-rays to make sure, they told us he needed surgery. It is suppose to be a very non-invasive surgery where they will place pins in his growth plates to allow the other side sometime to grow. Brayden will have this surgery on August 25th.
Hello August. We started a month of calm and relaxation before school starts for the boys. Brayden has picked up outpatient speech with Richmond Hope Therapy. He has mastered saying yes or “Yea”, and is working on the letters p,b,m,h. ABA has been working with him on independent play skills. They visit his daycare regularly and report that he has come so far and is even seeking out friends to play with there. Speaking of daycare, this is our last year in a traditional daycare setting for Brayden. We will miss Mrs. Penny, his favorite teacher, and all the love she has shown our boy over the last several years! With ABA’s help, we will be spending the year working on potty training in hopes that we will be able to secure some camps for next summer. In the past, we’ve been incredibly limited in terms of where Brayden can attend because he’s not potty trained so this will be huge if we can accomplish this goal. Please cross your fingers for us.
Ankle surgery on August 25th.
Check up with Dr. Silverstein (for cataract surgery)
Please know that we wouldn’t be here without the help of the CCC+ waiver! If you know of anyone who may benefit from this waiver, please send them our way so we can help other families get their children the benefits they deserve!
Thank you all for following our journey. We are anxiously waiting to welcome the new school year but until then, you can find us watching our oldest play football and enjoying the rest of the summer!
You have so much on your plates. Brayden is so lucky to have such loving parents who would go to the ends of the earth for his care, and yet, I can only imagine how frustrating it must be to not have answers. I will keep you all in my thoughts and prayers for all that you handle every day with grace.