We had the absolute best visit with Erin and Charlie, complete with game nights, Lego building, human playgrounds, ringing in the big 2-8 with my favorite local restaurant (and people), and a Thanksgiving turkey that was less than delicious.
Shortly after they left, my mom came and she helped with all the things! She watched the boys so we could finish our Christmas shopping, and forced us out on a date (which I admit its never easy for me to leave Beckett, but we don't have the chance to do it often, so we try to take advantage.)
Beckett is so motivated to move. He has taken steps independently from me to Regan across the playroom, can stand on his own for about 30 seconds, and has even gotten himself up to standing from sitting a few times. He has been at this spot developmentally for awhile, but he is clearly driving this ship and has his own path he's forging. His main choice is to crawl everywhere, so we try to keep our shoes off in the house as much as possible. Since Beckett is starting to take steps, he really needs to be wearing his orthotics inside as we aren't spending much time outside. With that said, we ordered him a few pair of indoor Billy shoes, so we've been working hard to have him wear them multiple hours a day. This should help him to correct his foot placement since when he's walking without them on, his right foot is almost at a 90 degree angle. As we've known, his right side has always been weaker, so he just needs that extra bit of support to get his steps in!
He's been working more with using his hands in play, and figuring out what that looks like for him. He loves to empty toys out of containers (much to my dismay), and point to different toys he wants to play with, and vision is helping with that piece too.
He specifically knows to crawl to the kitchen and point to his bottle on the counter when he wants to eat, so Speech is ordering him some buttons that we can stick on the cabinets so he can learn to press them when he wants certain things. We'll start with training using his bottle. His vocalizations are the constant "ah"s and when he really wants to get his point across, he will shout "ahhhhhhh" for up to 5 seconds sometimes! Speech doesn't work on "speech" so much anymore and mostly narration, or pointing with one finger rather than multiple fingers.
He has lost almost a lb in the last two months. We've added more ounces of formula on a daily basis to try and make up for what he may be lacking in terms of solid food. The first two nights after upping his formula, he slept independently through the night, so I thought we solved the sleep problem...the third night, and every night since then has proven me wrong. He occasionally will eat the food I offer him, but its pretty few and far between these days. So I am going to continue to offer him foods when we sit down to eat, but also give him more formula to fill him up otherwise.
During the summer he was sedated for both an MRI and ABR, and that time he had a breathing tube down his throat. Thankfully, this time he only has was being sedated for the ABR (auditory brain response) and it wasn't going to be as long of a sedation so he only have to have an IV and have oxygen at his nose. I knew what to expect for this process since we were at the hospital 6 months ago. Check in was seamless. He was quite cranky after his IV was in when he couldn't sleep or eat, and we were waiting on the doctor for close to an hour. Finally the doctor showed up to discuss the procedure, the nurses grabbed him and then I just had to wait. All the other parents had been called back to their kids, leaving me the last man standing. I saw a doctor approaching, and assumed she had to have been coming to talk to me since I was the only one there. "Beckett?" She asked, with a defeated look on her face, and I nodded. She came to sit next to me and asked if I had noticed any changes at home, to which I said no (Beckett often lives in his own little world anyway). She went on to tell me that his hearing loss had progressed, and he now has moderate hearing loss in both ears. I was immediately brought to tears because to be honest I hadn't noticed any changes at home, and I fully expected her to tell me his hearing was exactly what it was 6 months ago. We've always known that he has a chance of losing his hearing well into his childhood years, but I truly believed since his first year of life he passed all his hearing tests that hearing loss was not going to get him. To find out that CMV really had done more damage was difficult to hear. The next thing to do was get a behavioral hearing test to confirm what this test showed. I got a call the same day to schedule that follow up, and they didn't put us on the schedule until February. Knowing that he qualified for hearing aids, I didn't feel like it made sense to wait over two months for that appointment, so I sent a message to his doctor a few days later. Thankfully, I got a call and they were able to get us in that day for a behavioral hearing test (which is in a sound proof room, putting headphones on Beckett, playing sounds and seeing how he responds). This confirmed what the ABR showed...moderate hearing loss in both ears. His ENT signed off on getting hearing aids, and sent a referral for Beckett to start seeing someone from the Hope School for Deaf. Yay, another appointment to add the our repertoire! We won't have to check in with ENT/Audiology again for 6 months, so we will likely wait and get established in Houston. We scheduled our hearing aid fitting appointment and were on our way!
His hearing aid appointment was so easy and to the point, which I really appreciated because most of his appointments are not like that! We went in, talked a little about next steps and got to business. Tricare has to authorize him needing hearing aids before we can get them, but that didn't stop us from getting fitted at least. Since he has moderate hearing loss on both sides, his audiologist reassured me that the authorization would happen, it would just be on Tricare's timeline which will hopefully only be 3-4 weeks. I was able to pick the colors for the hearing aids themselves (the plastic piece behind the ear that contains all the technology). This piece he will have for up to 5 years before needing a new one. Then I was able to choose the colors for the plastic piece that goes into his ear, but those will change a lot more frequently as he grows and needs bigger ones to mold into his ears. He sat patiently as she created the molds of his ears, and we were all set! His audiologist was even able to show me what his hearing loss sounds like for each individual ear. In his left ear, he has hearing loss across all pitches, so it was just like hearing a very quiet whisper instead of a normal talking voice. His right ear he has hearing loss of more of the higher pitches and he is hearing more low sounds, so it was similar to being underwater...a very muffled sound, able to hear noise but maybe not able to tell what those noises are or what those voices may be saying. All of this to say, he's been living in a pretty quiet world, but these hearing aids are going to change that.
It has been over a year since Beckett had his 48 hour EEG following seizure activity on an EEG last fall. We haven't seen anything at home suggesting he was having seizures, but he is always at a higher risk for them, so we will continue checking on what is happening. I feel like a pro at EEGs at this point, the only difference is this one was shorter than I was used to at only 30 minutes (they're usually an hour), and the tech stayed in the room with us (typically its been a very calm environment with soothing music to keep him asleep). It was pretty straightforward, but certainly not a long enough nap to sustain him the rest of the day, so when we got home, he slept for another 2 hours! His neurologist called a few hours later to go over the results. No epileptiforms (seizure activity), but his brain waves are immature for his age. His brain waves have been immature for his age since he was born, so that isn't surprising, but so so grateful there was no sign of seizure activity! We don't have to meet with neurology again until we get established back in Houston unless we start to see something change in him.
Both boys got their updated Covid shots, and annual flu shots this month as well. With having Lissencephaly, I always worry about Beckett, but even more so when it comes to how he will handle a virus. He can cough and sneeze, but the toll it takes on his body wears him out, so we will always do what we can to protect him from the potential detriment these viruses could cause. If there's one thing I've learned in the last two years, its that [cytomegalo]viruses are no joke! 😉
We had a quiet Christmas spending it as the four of us, and we look forward to all the family gatherings we get to be present for starting next year back in Texas!
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