June

We started the month meeting with his new Neurologist. We went over his and my medical history a little bit, how we learned about him being born with congenital CMV, and just kind of how we got to where we are today. She was wondering why we had an MRI before age 2, and I let her know that since he was having a sedated ABR, I wanted to get updated images so he would not have to be sedated again in a few months, and she agreed that that was a good idea. We looked at his new images and compared them to the images from when he was born, and I was finally able to see those images from birth. I remember his initial appointment with neurology back in March 2022, and his first neurologist really shooed us away. I could now see just how smooth his brain was at birth and it is wild to finally see.

Some main takeaways from the updated MRI:

-The images have more definition, but definitely still have lots of areas where he is lacking folds.

-There is a part of his brain called the cavum septum which is two pieces that fuse together into one, and his never fused. Since they never fused, there is a little cavity of fluid in the middle. This poses another risk of seizures.

-The calcifications in his brain can make him at a higher risk for seizures as well. 

Other takeaways from appointment:

-For now, Kate Farms is working for his nutritional needs. We should be open to the possibility of a g-tube in the not so distant future as his nutritional needs increase, but his oral capabilities remain delayed since the rate at which he is gaining weight is also slowing (more on that with Feeding Therapy)

-He has microcephaly from being born with congenital CMV. His head has been in the <1 percentile since birth. When we were discussing this, I was immediately taken back to going over CMV with my Maternal Fetal Medicine doctor, and how Microcephaly was my main concern for him with having recently had CMV myself and wanting to dig deeper and get more answers about Beckett. If I knew then what I know now, I would not have even batted an eye!

-While he does have CP, he is already receiving all the necessary therapies with the Lissencephaly diagnosis, so there's nothing new we need to do. Most of the time, kids need this formal diagnosis in order to begin receiving services, but he already receives services through his other diagnoses. On the other hand, sometimes insurance can fight you on receiving devices or necessary equipment, and having that formal diagnosis can help, so we will be getting that this year sometime for sure. We haven't had any issues with insurance yet, but we don't want to have any hiccups down the road!

-We will always monitor him for seizures, and be on the lookout for any seizure activity because he will never be out of the clear in that realm. He has had past EEGs that show seizure activity, he has had abnormal EEGs, and he has also had normal EEGs. I am grateful that his seizures have not started yet, but in all likelihood, they will start at some point in his life. I really hope that whenever they do start, we are back in Texas so that I can have my mom there to help, because I need her! (Hey mom and dad, we found a house for sale 2 minutes away from your new house, so fingers crossed for next summer! 😉)

-The developmental pediatrician's office has a year long wait to be seen and he is receiving PT/OT/Speech, so he does not need to be seen by them. By the time he would be able to get an appointment with their office, we would be moving back to Texas. 

-His hypotonia (low tone)/hypertonia (high tone) can get worse as he gets older, so if the need for medication to relax his muscles becomes necessary, we will handle that later on, but for now with the help of therapy he's doing great!

-We will follow up with an EEG, and appointment with our neurologist at the end of the year to go over the results. If anything changes before then, we can always have an EEG sooner, or be seen sooner. 

Following his latest swallow study, knowing he is at a high risk for aspiration, we needed to check and see if there was anything structurally getting in the way of his swallow. The way to check the structures in his throat is by putting a camera down each of his nostrils. In order to get the scope down, I held his arms and legs, a nurse held his head in place, and his ENT put the scope through each sides of his nose. The right was as easy as it could be, he screamed through the whole thing and tried to escape, but she said everything looked fine. Then came the left and she could not get the camera through his nose because his septum is deviated. She sprayed some Afrin in his nostril to try and open it up. She tried again to get the scope down and got it as far as she could, and said that other the his septum, it looks normal. So there is nothing in his throat that is preventing him from swallowing correctly, which is good to know, but also to be expected. The main cause behind his delay in swallow and risk of aspiration comes from his neurological issues. With ENT, we also discussed his ABR results, and decided that it would be best to have another sedated ABR in 6 months to see if there is any change in his hearing.

His PT sent in a referral for him to receive orthotic footwear. This would help his walking tremendously, because it would force his feet to move properly. Right now, he uses the inside of his foot when taking steps, he's always pointing his feet, and curling his toes in, and this would help build the correct movement. Within two days, insurance had approved his referral and we scheduled our appointment to get fitted. At the fitting, they created molds of both of his feet. His left foot is going to have a piece that goes to just above his ankle, and his right will go almost to his knee. His right side has higher tone, so it needs to be larger to help support the correct movement of his foot. I was able to pick the pattern and the Velcro color as well! They'll be finished next week, and then we'll be able to get them the following week. They won't fit into regular shoes, so we'll also be getting him some Billy Footwear shoes that will be able to unzip all the way around the toe to fit his entire orthotic into each shoe.

Physical Therapy also gave us a loaner gait trainer for Beckett to use while we wait on insurance to decide whether they believe it would be beneficial for Beckett to have. We've been waiting for over a month at this point which has been very frustrating but I'm so grateful his clinic has an extra we can borrow for now. Beckett loves it, it is something he can use both inside and outside, and I'm really excited and hopeful that he will have his own soon. In fact, just yesterday, I received a call and insurance gave the approval for his own gait trainer! It should arrive in 3-4 weeks.

Our Speech Therapist has been trying to implement using sign language, narration, as well as introducing an AAC (Augmentative and Alternative Communication). The clinic that we use has a therapist that specializes in AAC, so she felt like it would be the most beneficial to Beckett if we switched therapists to now having the AAC specialist to work with Beckett. At our initial meeting with him, we went over what he was doing communication wise at this point, and what I'd like to see his communication evolve to. I spend all my time with Beckett, I know him even better than I know myself. I know when he's hungry, tired, wanting to change scenery/position, I know all his needs. I let his new therapist know that I really don't need him to be verbal for any reason, sure it may be easier to communicate with others, but it would just be a bonus. The AAC would help with him pointing to images of what his desires are, maybe a photo of a toy, or a pouch he would want to eat. Those are all long term goals, as we are just trying to expose him to the device right now. 

We had an appointment with his feeding therapist this month as well. We haven't made much progress with his oral/motor skills in the two months since she has seen Beckett. He doesn't have much desire to eat, he doesn't experiment with toys in his mouth, hands, crackers, anything. When I am actually able to get a few spoonfuls of a pouch into his mouth, it's a win. We are getting a referral to a GI hoping to let us know if there's anything else that could be impacting his appetite or motility. His Pediatrician is also looking to put him on a medication that will relax his stomach muscles so hopefully he is hungry more often and has more of a desire to eat. We are also going to try and get him to drink out of a sippy cup to move away from the bottle (it will be a long process). He's currently getting all his nutrients from Kate Farms. If he continues to stay in this stage orally, he will just likely need more Kate Farms as he gets older since that's all he's able to have and hopefully we can avoid a gtube. He is eating like a 4-5 month old and I am often discouraged by his feeding but we are hopeful that one day he'll be able to eat solids.

When we arrived here in Spokane at the beginning of the year, Beckett was 13 months old, and developmentally a 5 month old. Now, he is almost 18 months old and developmentally a 9 month old. He has made such great progress since being here, and it's incredible to watch. He is trying to pull up on anything he can reach, but army crawling everywhere otherwise. He also loves to take steps when being supported by someone walking behind him. With that said, we appreciate how careful our therapists are in ensuring we don't compare Beckett to other children as he is truly one of a kind. Because both CMV and Lissencephaly impact each brain differently, there is no way of knowing what he will and won't accomplish, so we try not to compare him to others. We are proud of everything he can do and are excited to see him continue to break boundaries we never thought he would!