Beckett had his 15 month check up this month complete with the final round of many vaccines. He did great! She made sure we had gotten our appointments with all our specialists set up and the ball rolling with all those things, which we have! We will check in again with our pediatrician for his 18 month check up.
In the weeks leading up to Beckett's sedation, I was growing increasingly anxious. Since he was born, we've had a lot of doctor appointments. I have been there for every single one. Every appointment, every procedure, every study, everything. For this hearing test and MRI, I was not going to be able to go back with him and I was having such a hard time with that. Not only am I with Beckett all day everyday, but I don't like when other people watch him. I shed lots of tears, and I was very worried. All the nurses that were prepping him were so great, and so caring. They kept us together until the last possible moment, and I only cried a little bit! Thankfully, I had a friend go with me to the hospital while Regan stayed home with Lincoln (because he didn't want daddy to leave him either), and she kept my mind distracted for the 3 hours while Beckett was in the hands of the doctors, nurses, and technicians. There was a tv screen in the waiting room that let us know where he was at all times, and we would go back and forth periodically and check, as we didn't sit in the waiting room the whole time. When he got to the PACU (post anesthesia care unit), we were able to go back with him as he was waking up. He was intubated for the procedure, so he had the weakest/saddest cry I have ever heard from him, but thankfully once we got there I was able to scoop him out of the bed and give him some juice and cuddles while he was waking up. He had to spend about 45 minutes in the PACU to make sure he was coming off the anesthesia fine, and all his vitals were normal. Then we got to take him back home. It was a draining day, but I'm glad we were able to get this testing done! He amazes me with every scan, test, EEG, all the things he deals with. I have a great deal of anxiety leading up to all of these things, and he handles everything like a champ.
The audiologist who completed the ABR (auditory brainstem response) hearing test called me the following day to go over the hearing test results. His right ear is perfect, he was able to hear everything on that side. His left ear has mild hearing loss. He did not respond to high and low pitches. It is something we will continue to monitor for any changes, but he isn't experiencing enough hearing loss that he would need a hearing aid or anything yet. He was on Valganciclovir for 6 months after he was born, and that medicine was supposed to help prevent any hearing loss. It's not 100%, however for the majority of kids who do go on Valganciclovir, have the same hearing for life at 1 year old. SO that should mean that what this hearing test showed, should be what he has for life. We will likely do another sedated ABR in 6 months to see if there are any changes.
His pediatrician also called to let me know that she had received his MRI results. She wasn't able to answer many questions as this is not her specialty, but she did inform me that he still has Lissencephaly (this is not something that will ever go away because his brain developed this malformation when he was in my tummy, so I'm not sure why she had to tell me that). She said there was nothing worrisome on the MRI, but that I could take any questions to our Neurology follow up next month. I will be asking his neurologist plenty of questions because not only do I have so many questions about the MRI report, but I also am very interested in getting another opinion from a new neurologist. I'm excited to see all her takes on the reports, her own observation, and what she believes next steps for him would be. Hopefully she'll refer us to developmental pediatrics so we can pick back up with that specialty.
We are still waiting to hear if Beckett has been approved for a gait trainer. He is so motivated by Lincoln, and wants to move so much but his core is a little unstable so getting this gait trainer would be a great thing for him to use as he continues to get stronger. He has the drive to move, but he's lacking the coordination.
Speech Therapy continues to use the AAC, and lots of verbal communication in pair with that. Not much to report here, as he's completely nonverbal. Maybe one day! For now, he is clapping his fists together more and more, and it's so cute!
Vision therapy continues to work with him and she gives me lots of ideas on how to better play with him to incorporate his strengths in his vision. Channeling his auditory senses is really important since his right field of vision is pretty nonexistent, and that's always a great way to get his attention! His eyes are crossing less than they used to, and he's gotten comfortable with turning his head to use his field of vision on the sides that he can, rather than looking directly and not being able to see what's in front of him. He's adapting to his abilities.
We had our initial Ophthalmology appointment with his new doctor. We discussed his previous doctors findings, and then his eyes were dilated. When she did her exam, she came to the same findings that our doctor in Temple had told us. His macula didn't develop properly, so he cannot see directly in front of him, but he does have shadow-like vision in his periphery. We will see her again in 6 months to discuss the possibility of putting him in glasses. He doesn't need glasses for vision, but rather to protect his left eye from being damaged. With the lack of vision in his right eye, his depth perception could be off, and we don't want him to accidentally do something to damage the left eye.
By the end of the month, we had two weigh ins, and Beckett has reached the 50th percentile, which is phenomenal. His weight increasing has slowed a bit, which is good because we don't want him to gain too quickly. He's still getting all of his nutrition through his formula, and also eating some puree, and yogurt. We did not have any feeding therapy appointments this month. There's not a whole lot that we can do at this point in feeding therapy, we are mostly waiting for his oral capabilities to strengthen as he develops physically, because we can't be trying to feed him more foods knowing he's aspirating; he's definitely not ready for that. Hopefully in the next couple months I'll have something to report here, but for now we're at a bit of a standstill.
Moderna has developed a trial vaccine for CMV. A few months ago, I had checked to see if there were any testing sites in Spokane and unfortunately there are not, so although I qualified, I was unable to participate since there was no where for me to go to be a part of it. I would literally do anything for Beckett, and do whatever I could to try and prevent other parents from dealing with the devastating effects of CMV on babies. It's amazing that there is a trial for a vaccine at all, and I wish I could help out in this medical process. All of that to say that my sister has started the process to be a candidate in this trial and that means the absolute world to me. So if you're reading this, at this point the pool is still open and you can still try! CMV is very easily transmitted, and this vaccine could be huge in preventing other developing babies from being effected.
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