Update on Beckett

Beck has been doing so well! He has been off oxygen for a long time. We still have it here at the house just in case but have not had to use it in a long time. He has been receiving weekly feeding therapy since last August. Unfortunately, my sweet boy is not making any progress in his swallow. We were told that it should correct itself really quickly, like within 4 months. We recently repeated the videoswallow study with no progress at all. Still stuck on honey thick. He had an upper endoscopy done and ph probe placed both coming out within normal limits. We still treat him for acid reflux just so that he does not aspirate on acid. We also had his tonsils taken out and another set of tubes put in his ears because of the constant ear infections and he is now resistant to all oral antibiotics to fight the infections. At our first appointment there the speech therapist seemed to think there was more going on with Beck than I knew to look for. I thought my kid ran funny, kinda cute, kinda quirky. But no, I have been informed that there is more to it. So we qualified for both speech and physical therapy and did those until recently. Speech has been a world of difference. Beck used to assimilate words meaning he would use an ending sound for the beginning sound, cuck for truck, dound for found, gog for dog, etc. Those have been corrected and Beck is coherent. We are taking a break for now from physical therapy to explore some occupational/sensory stuff going on. Beckett falls all the time, like 5-6 times a day. Up the stairs, down the stairs, off the couch, off the bar stools, kitchen chairs, benches, and that is on top of tripping several times a day. So we are exploring that further because they have found that he is hypotonic, meaning has low muscle tone throughout his little body. We have gotten him a set of SMOs. They are supra malleolar orthotics, fancy words for ankle braces. They don't look too bad. He got to pick out the color and stuff, blues with trains and airplanes. And this mom is determined to not put him in orthopedic looking shoes so he rocks DCs all the time. They are up about sock height and just give him some support. They don't help with the falling but the cute, quirky run.



The lack of swallowing progress and hypotonia has landed us in the care of a neurologist. He has ordered blood work and an MRI in July. The neurologist really did not give me much insight to his thoughts other than pointing out what medicine says are flaws, epicanthal folds, wide spread eyes, large ears. The things that I have always found beautiful on Beck. He sent us to a cardiologist who said that Beckett's murmur is unchanged and completely innocent. The cardiologist told me he does not need to see us again unless Dr. R find that Beck has Duchenne's Beckers Muscular Dystrophy. He also felt the need to tell me that this is probably what Dr. R should and probably is thinking for Beck. These are SCARY diagnoses, not anything you ever want to contemplate for your baby. I will not write out what these are. I am trying not to dwell on these. Trying to remind myself we could be dealing with a benign hypotonia. Trying to remind myself that Dr.B is a cardiologist not a neurologist. It's hard! I am holding out till July to talk to the neuro after the MRI. We are not sure if it will show much and know we will have to bring in a geneticist too. Dr. R already said that. So the 12th of July, I am praying for answers for my sweet boy.