*as you read this, prepare for the run ons. There's been a lot of appointments, a lot of information, and it's not flowing so well as I write this month.
We started this month with Beckett's second EEG to check his brain activity again. Three months ago, it showed immature waves for his age, sharp waves in the left temporal lobe (where the cyst is, meaning he's at risk for seizures originating from that region), but no signs of seizures at that time. So we were following up to see what it was looking like at this point. He had the EEG, and I am always so concerned how he is going to do in appointments when they are expecting something particular from him (like sleeping on demand) he's got a pretty regular schedule and appointments don't necessarily line up with his daily routine but I mostly get first available so Regan doesn't miss too much work since I don't know that far in advance when my mom is going to come stay with us. The EEG is supposed to be completed when they're essentially exhausted so that they will sleep during the whole thing and get a lot of really good data. Well he fell asleep in the car ride over, so he wasn't going to be as tired as we needed. I woke him up immediately when we got there because me talking to him in the car wasn't doing the job. We went up to our appointment and waited around to be called. He was in a really great mood which worried me for him being able to go back to sleep. Luckily, all the wires that have to connect to his head takes about 30 minutes and he has to be really still so he was getting very frustrated and pretty much cried the whole time (i.e. tiring himself out). When everything was finally connected I crawled into the bed with him, the nurse turned all the lights out and set the perfect environment for sleeping. By this point, it could have been time for him to eat again if he actually had a nap and it was going to be easier for him to fall asleep if he ate first to help put him to sleep, so I nursed him and he drifted to sleep. He slept for about the next 45 minutes and when he woke up he was not very happy. Luckily, the nurse came in about 5 minutes later to tell me he was all done. Those 70 minutes went by so fast! We disconnected everything and were on our way back home! He was even so exhausted from this whole morning he fell right to sleep in the car on the way home too. It was a rough morning for this little guy!
We were supposed to follow up with his neurologist this week to go over all the results but we have had to postpone that appointment until mid August. We'll see what his EEG showed when we meet with her soon!
After we finished this appointment, we were able to go home and relax, and then we packed up and headed to Houston for a week to spend with family. It was an amazing week! It was the first time Regan had even been to Houston since November, but we were already keeping to ourselves to protect Beckett in my tummy so he didn't even get to see anyone then. So it was almost a year since Regan had actually been back home and seen people that weren't my parents! We all had the such a great time getting away from home and spending time there! Lincoln had the best time as usual being at "bam"'s house! It was truly just what our hearts needed...the perfect distraction, and lots of helping hands with the boys!
When we returned home, we went straight back into appointments. Next up was his 6 month hearing screen with his audiologist. This is the 3rd hearing screen he's had. (He had one around 1 month, 3 months, and now 6 months). It was even the same type of hearing test so we knew what to expect. But it's another one that he's supposed to be sleeping for. Again, I was very nervous for how he was going to do because we need to get lots of good data. He fell asleep in the car again (morning appointments typically align right with his first nap of the day). So when we got there I woke him up and hoped for the best! We get back to our room and there's no need for an explanation this time. We're pros at this point. The doctor is trying to attach all the cords, but he was fighting it a lot! He was getting so hot, and started sweating from how much he was crying as they were messing with him, and that made all the sticky attachments fall off so it took a lot of trial and error to figure out how to get everything attached. Once they were finally done messing with him, he was still very upset so I just rocked him and he fell right to sleep so they could start the test. Just like the previous ones, they test both his ears for high, medium and low volume, as well as high, medium and low pitches, and they're also seeing how far the nerves are sending signals to his brain. He passed everything again this time which means he's pretty much never going to have an issue with his hearing in life (at least from the effects of CMV). If he starts to have a lot of ear infections and has hearing loss from that, that's a whole different story entirely. But as far as CMV goes, we know it didn't take his hearing from him.
He had his 6 month check up at the pediatrician. He weighed in at 14 lbs 7 oz, and the 4th percentile so he's finally showing on the growth chart! His head circumference and height have both fallen off the growth chart, meaning those are not where they should be for his age and weight. These are both effects from the CMV. Next up we discussed his eating and I knew he was going to see if he was ready to start purées. I actually started purées with him when we were staying with my parents by slowly introducing it. He didn't react poorly, or choke, so he has now gone up to eating two jars/day at this point and his pediatrician was very pleased to hear that! I'll continue to offer him different items to get him very comfortable with the different consistencies of liquids because by his 9 month appointment the pediatrician would like him to be fully eating table food and no longer the purées. If he's not there, we'll look into a swallow study, feeding therapy, and potentially a feeding tube until he's able to eat table food on his own. But we're not there yet, so we'll keep working on it. He's still nursing 5 times a day, which I am so happy to say. Breastfeeding is hard and I doubt everyday if he's getting enough but his weight gain shows that he is! When it came time for the physical exam obviously he noticed the stiffness of Beckett's limbs, and is concerned about the potential for contracture (stuff limbs that are not able to move) but the only thing we can do to prevent that is therapy which he's already doing weekly. He also recommended him starting Occupational Therapy so that he can work on bringing things to his mouth, and grasping at things to help prepare him to feed himself since that's the main thing we will work on over the next couple months. Lastly, he got his next round of vaccines. So he will get a break from shots until he's a year old!
He has been making great progress in PT. The first week of the month we weren't able to have our visit because his therapist was sick but we picked up the second week and got right back into things! Its very important for him to gain head control and core strength for many reasons, one of which being the introduction of solid foods. We've been working hard on different exercises to help him with that, and help him to start to roll over from his back to his stomach. He's gotten to the point where I can initiate a roll for him and he's able to finish it out. It may not seem like that big of a deal to some people, but it's been so amazing to see the progress he's made in the last two months alone.
His therapist is a part of a group online of physical therapists from all over the world. There is an instructor through this forum from New Zealand and she is looking for patients to be able to work with and help out and Beckett's therapist volunteered us with my permission. So I took some photos of him in different positions, doing different exercises, and she is sending those to the instructor to get her opinion on what else he can be working on to get stronger. All the other physical therapists are even able to give their insight once the instructor uses it for a teaching moment in this group. We will be getting a core-supporting brace for him to utilize as well and see what sort of difference it makes, and I am very excited at this opportunity for him to get other perspectives on how he is doing as well as more tools for him to use daily!
This month seemed like a long one, with plenty of news. He's the most special boy, and truly an amazing blessing.
Love to you and this wonderful boy.
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