This month we had one visit with PT, and she brought us Beckett's new "Theratog" suit. It is quite an interesting set of fabrics, because they're essentially cut pieces that I velcro together and it gives him an incredible amount of stability. It is working to strengthen his trunk [core]. There are also pieces I can add when he's on his tummy to pull the weight back into his hips, and wrap his legs to bring his knees to his hands. He rolled over from his back to his tummy for the first time. He is getting very comfortable rolling to his side, and he is finally able to get all his weight across. It doesn't happen frequently, but I know he's capable, and he will continue to get stronger. His therapist had an abdominal procedure, so she took the rest of the month off and we will see her again in September, but for the time being, we will continue to work using his Theratogs.
When Beckett had his 6 month check up with the pediatrician, we discussed starting OT. So I talked with a few friends on who they had experience with in the area, called to see about scheduling an evaluation for Beckett and got the ball rolling. All of the specialists Beckett sees require no referral from his pediatrician, except PT and OT. So I waited for them to send the request to insurance, and to the therapy facility. Then they called me for scheduling. We were able to get in for his evaluation within about a week which was really nice. After discussing what my concerns were, the therapist did his exam. He worked on a few things with him to see what he was capable of at this point, and asked about what I was seeing in him on a daily basis. I had mentioned that his neurologist and PT both have mentioned CP (cerebral palsy). It's common for people with CP to have a strong side and weak side. For Beckett it appears that his left side is his weaker side and his right is his stronger side. We're able to see that because his left side is much more tense than his right, and he is reaching for things more from his right. When you grab his arms/legs, he fights it more with his left as well. Initially the therapist said we could start with once/week and when he has a reevaluation we can move up in frequency if necessary. A reevaluation wouldn't be for 6 months, so I asked if we could start with twice/week. I know he's so young but I want to get him all the opportunities I can...even if it's an extra 30 minutes. We do have to drive to them, they don't come to us, but it'll be worth it for Beckett.
Since we had to postpone our neurology follow up last month, we went to see her this month. He weighed 16 lbs, and has reached the 15th percentile in weight which is so amazing thinking how far he's come!
Beckett had an EEG at the beginning of July to check his brain activity and see how it compared to his first EEG done in March.
To give you some reminders of what the first EEG showed:
EEG was completed at 45 weeks old (8 weeks old, born at 37 weeks), and brain activity was equivalent to a 38 week old, I.e. immature. There were also sharp waves in left temporal lobe where he has a cyst (higher risk of seizures from this region)
His EEG in July was completely normal. Now what does normal mean? Well no sharp waves, and age appropriate brain activity.
It's quite common to have an abnormal EEG, followed by a normal EEG, so who knows what the next one will look like, but the good news is this one was normal. He will have another EEG done in a few months, or sooner if he starts to show signs of seizures. His neurologist put in a request for us to see a pediatric rehabilitation medicine doctor, who will be able to evaluate Beckett, or prescribe medication that would relax his muscles to prevent contracture (permanent stiffening).
I remember when we had our first follow up in March with neurology following our NICU stay, and how devastated I was after the appointment. She had mentioned the potential that he would have cerebral palsy. It was devastating enough hearing in the NICU that he had Lissencephaly and thinking of all the challenges he would face in his life, but then adding CP onto that? I was completely heartbroken for my baby. I've since had many months to sit on this information so when this neurology check up came, and she definitively said he had CP, I almost wasn't phased because I now see it every time I look at him. I see all the signs, PT sees all the signs, peds sees all the signs, and we've been discussing it for months at his appointments. He still qualifies for the same therapies with this diagnosis, and we will continue to work with him toward the common goals.
I have requested from his pediatrician that we start speech therapy to help him work on learning how to swallow different foods. Right now, he's doing well with different purées and oatmeal, but I want to do whatever I can to help him be able to eat table food and avoid needing a feeding tube in the future. We are currently waiting for the therapy facility to call and set that first meeting up.
After these check ups, we loaded up and headed to Houston for some great family time! We only have a few more months here in Texas before we pack up and head to Washington so we are soaking up that time while we can!
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