Back to December

This month, we closed out with our therapists here at Elite Therapy. It was sad to leave them, because they all have done so well with Beckett. I'm definitely going to miss this clinic, but I hope his next clinic is able to make me feel just as comfortable with their working with Beckett.

Following his one-hour EEG, we had a follow up with neurology scheduled to discuss in more detail those results, and just have a check in. She asked me a bunch of questions on where Beckett was at developmentally, and looked at him as well to see what sort of skills she could see him do. She was very pleased to see some progress since our last visit in August, which I was as well! Then we talked about the EEG results and that seizure activity that was caught on his last EEG. Obviously with his diagnosis we know that he will always be at risk of having seizures. So what was caught on his EEG was his brain sending seizure signals off, but they were only lasting for a few seconds at a time. Those signals need to last for 10 consecutive seconds for his body to actually go into having a seizure, which was not caught on the EEG. That is why we decided to have the 48 hour EEG done in the hospital, so we could get more data, see more of that's going on, and try and get more information from his brain. 

I was so worried going into the 48-hour EEG, and worried how Beckett was going to handle it. The timing was crazy because we went to the hospital on a Sunday, and our movers were coming to pack up our house on Tuesday, but I had a lot to do to prepare the house for the movers, and pack all our bags for the hospital and Houston, so it was a very stressful time, and I was also, again, worried about Beckett. Luckily he's not very mobile, so he laid in his crib in the hospital, we brought some toys for him to roll to, and we brought his bouncer chair so I could feed him his jarred food. He surprised me with just how well he handled his stay over the course of 3 days. It was exhausting for all 3 of us, and we didn't sleep very much with all the nurses, food services, and cleaners coming in and out all day long, which I should have expected. I remember waking up Tuesday morning and looking at Beckett and thinking he didn't look like himself, and he wasn't behaving like himself. He didn't eat much that day either. So when we got discharged from the hospital and checked into our hotel for the night (because there were movers at our house, and we needed our own space outside the chaos of moving to recover from the hospital stay), I ran by the house to get a thermometer. What do you know? A 102 fever. So I gave him some Tylenol hoping he'd feel a little better. This pattern continued for two days of Tylenol, fever breaking, fever returning, Tylenol, until I decided to take him to urgent care to see if something more was going on. They tested him for everything they could, all negative. I can only guess that he was just so exhausted from being poked, and messed with for 3 days and his little body was so tired. After a few more days of relaxing and recovering from all the stresses of the last week, he was back to himself. We have a follow up with his neurologist here for the middle of January to discuss these EEG results, and hopefully get some more answers!

Last time we saw the Ophthalmologist was in March of this year I believe. He told us we'd see him again around one year old. Beckett's going to be one next month and since we are moving, I wanted to see him one more time even though it's a little early so that I don't have to find a new ophthalmologist immediately upon moving. So he checked Beckett's eyes again and he came to the same conclusions. That being, his left eye is great. Top notch vision. His right eye is blind in the center but he does have periphery vision. I imagined it being like if he can't see in front of him then he'll be able to see things on the sides of his face, like if we were to approach him from the right side, he'd see us. His doctor informed me that that is not the case. It's more like seeing a shadow, if he's lucky. That being said, that eye is pretty much useless. It turns inward quite often, and as he gets older it will begin to turn outward. Since it does not follow with his left, and often crosses, we would have an option to do surgery and force it straight if it was something we didn't want to look at, but that is just ridiculous to me and not something I would ever imagine us doing.

We are officially checked out of Fort Hood, and now spending Christmas in Houston before Regan starts to drive to Washington on the 26th. The boys and I will fly out the first week of January once Regan is in the house, and our household goods have all been delivered. Until then, we'll just be hanging out here!

Since being in Houston, we got some one year photos done for Beckett and they were SO cute. I cannot wait to see how they turn out because he was in a great mood, and the photographer got some great shots!

Next month, we will start seeing Beckett's new pediatrician, start getting all our appointments  scheduled with his new specialists in Washington, and hopefully start back up with weekly PT/OT and Speech.