March Madness

We had such a busy month! We started the month with Beckett's speech evaluation to see if he qualified for Speech Therapy. When we were at Fort Hood, Beckett's speech therapist was working on his oral skills rather than his communication. We didn't get very much accomplished in our time there, and I do not feel like it benefited him very much personally, so when we moved here I was glad to hear that he would have a therapist for feeding and a therapist for communication. His speech therapist works solely on getting him to communicate. At this point, his speech is extremely delayed. He makes "ah" sounds, but that's about it. He's not saying "mama" "dada", "baba" none of the repeated noises, which is typically the first thing a baby does. SO after his therapist did her evaluation and heard what he was able to communicate, she found that he qualifies for speech therapy. She will be working on getting him to signal a few different things, since he's not able to vocalize his needs. She is going to work with him twice/month, and I will continue to implement the things throughout the day with him. 

Then he had an evaluation with a vision therapist. Not every child has an evaluation by a vision therapist, but when I initially took Beckett to the clinic, I had mentioned that he was blind in his right eye. His coordinator had mentioned that they had vision therapists and she would be putting in an order to have her come see us and see if Beckett qualified. At her evaluation, I explained his medical background, and explained that his right eye did not develop properly when I was pregnant since I contracted CMV around 10/11 weeks pregnant. Just in her observation she could see that his right side is weaker, and his right eye doesn't follow his movements quite as well. She will be working with him twice a month to try and help him become more aware of his surroundings on his right side and be able to use that side of his body more.

Beckett's feeding has been the biggest struggle lately. He's been showing some signs of aspiration, which I brought to the attention of his feeding therapist and pediatrician. He had previously had horrible congestion, was very raspy after he'd drink his bottles, coughing throughout drinking bottles, and he's been struggling to gain weight. All of these are signs of aspiration. With that said, his pediatrician has ordered a swallow study be done to see if we can figure out what is going on. His feeding therapist gave us a new type of milk for him to drink, that is more nutritious than whole milk to supplement for what's he's lacking from it eating solids, and has a much thicker consistency so he hopefully wouldn't choke on it as much so he can finally start to gain weight. After seeing how his tummy handled it, she put in a prescription for the milk so we can get it for Beckett. It is covered by insurance, and it gets delivered straight to the door with a months supply which is fantastic. After a week of being on it, a lot of his issues have subsided. He's not as congested as he has been, he's sleeping better, and he's finally gaining weight. On the other hand, since he's been drinking the Kate Farms milk, his desire for purees has really gone out the window. So he's not eating that any longer which has been discouraging but the priority right now is to prevent the aspiration and get him to gain weight and get back on his growth curve, and we are getting there. It's pretty cyclical right now. Sometimes he's doing really well and other times he really struggles with drinking.

Next, he had his 12 month hearing test. The audiologist puts a device in his ears to see how his ears are responding. In his newborn, 3 and 6 month hearing test, everything was clear. Today, both of his ears did not respond to the high pitches, which is alarming. Then we went into a soundproof room and he did not react to a majority of the noises. Because of CMV, he can experience hearing loss into his adolescent years. The fact that this change happened in his hearing test is not unexpected, although it was still upsetting from my point of view. Immediately following the hearing test we met with his new ENT so she could check him and make sure nothing was going on in his ears that may have been preventing him from hearing, like fluid buildup, which there was not. The only way to know exactly what is going on with his hearing, and see what exactly he can and cannot hear, is to have a sedated hearing test. So we have that scheduled for May.  

He had an MRI right after he was born, and his old neurologist would have done another MRI when he was around two years old. By the time we are able to have the sedated hearing test, it will be about 7 months before he is 2. Since it's going to be really a rough day for him to go through the sedation, I have requested for the pediatrician to order another MRI so that he does not have to go through sedation in another 6ish months following the hearing test. The hospital is going to be able to do both the hearing test and the MRI when he is under in May. It will be really great to get some new images of his brain, especially for his new neurologist to be able to compare it with his old ones since he has grown so much. 

We have been continuing to have our weekly PT/OT sessions, and Beckett is making great progress. He's getting really comfortable using his arms to pull him forward, his legs aren't incredibly involved at this point in his crawl. When he gets tired of using his arms, he flips over and scoots himself forward with his legs. In about a month or two, he is going to get fitted for a gait trainer, as long as he continues to develop on the same trajectory. He's also been having speech every other week, where we are mostly working on imitation and two signs (up, more). His frequent way to communicate is by bobbing his head, which is so darn cute!