Hello everyone, and happy quarantine! It's been a crazy past couple months with everything happening, but we've mostly been able to keep our same routine. CJ is an essential worker, so he's been continuing to work. Our therapists through early intervention have started doing tele-therapy through zoom, doxy, or FaceTime. Xander's sessions at Good Shepherd have been discontinued since mid March. They are supposed to be setting up for tele-therapy as well, but haven't gotten the approval for feeding tele-therapy from our insurance yet. 

Xander has been THRIVING during this quarantine. He started walking on his own at the end of March and hasn't stopped. He's even able to do a bunny hop on his own. We love when it's warm out so we can go out on the deck or go for walks through our neighborhood. He's still getting used to the grass - he hated it at first and would cry anytime we went out in the yard. But now he's even standing up on his own out there. 

He's eating more and more each week. It's incredible to see how much more movement he has with his tongue and how fast he's able to get the food back to swallow now. I don't think anyone really realizes how much coordination goes into swallowing unless you're working with someone who doesn't have all of the coordination down. It's just really incredible to watch how much he's improved. Our therapists have talked about moving to a thicker puree or even starting on meltables soon. It's just hard because we don't really have access to doing another swallow study at the moment to see just how much he has improved since the last one. 

Xander's receptive language is unbelievable. He knows so many commands that we give him or questions that we ask him. We're still working on getting him to talk more and make different types of sounds. He's got mama and dada down, and he's been getting a lot better at trying to imitate us. We just haven't gotten that breakthrough yet.

Last time I wrote, Xander was just about to have his eye surgery, which went very well. The surgeon ended up only doing the left eye - they go in and detach the inside muscle on the eye and reattach it back further so it doesn't pull the eye in as much. He went in and tested both eyes and noted that the left eye was much tighter than the right, which is why he only did the left eye. Things were great for about two weeks, and then we noticed his right eye starting to turn in. We asked the surgeon about it and he said we'd have to do another surgery. He said it's very easy to overcorrect if you try to do everything at the same time. And if you overcorrect, then it's very hard to backtrack and get things perfect. So this outcome is what he expected might happen and he's not worried about it. He said we can do the surgery whenever he wanted, but he would suggest waiting until after the flu season. Little did he know the coronavirus was coming! So we're not really sure when we'll get a chance to get his right eye fixed, we're hoping it will be sometime this summer.

Xander also had a sleep study at the beginning of February. This study was to measure how many apnea events he had and to see if he still needed to use the CPAP. Xander and I went down to CHOP and stayed overnight in the sleep lab. They come and hook up 50 electrodes to his head with all these wires connecting to a little command center thing. He basically had a "ponytail" coming out of the back of his head that tethered him to a certain spot on the bed. Also, he's in a strange bed, in a strange room. Needless to say, he didn't sleep very much that night. When the tech came in to take everything off him, she said they didn't really get a lot of data and it would be up to the doctor with whether or not he had enough information. I was so terrified that we'd have to do another sleep study. Xander actually threw up that morning and got a fever while they were taking everything off him because he was so upset. We ended up going across the hall to the emergency department and stayed there until 2 because of his fever. 

3 weeks later we had his pulmonary appointment, where we would find out if they had enough information to make a decision about the CPAP. They said they got enough and he was cleared from needed the CPAP at night! They said he still had about 3 apnea events an hour, which isn't ideal, but it's a lot less than the 70 he had before he went on the CPAP. They said that if he was a kid who didn't have a history of Moebius Syndrome or CPAP use, it wouldn't be enough to put him on a CPAP and since we had so much trouble keeping him on it, we didn't have to use it anymore. However, they wanted us to go see ENT to see if his tonsils or adenoids were enlarged and causing the apnea events. We had that appointment scheduled, but were unable to go to it because of everything being shut down.

The last change in the past couple of months is that I have started a little side business! My company is called "Smiling Heart Designs" and I make wooden signs and t-shirts. You can find me on Instagram and Facebook - I'm still working on trying to get on Etsy one of these days. I'd love if you followed my pages. It's been a fun outlet creating things and making them and I can't wait to get my orbital sander for Mother's Day! 

I also wanted to say a HUGE thank you to everyone who wore purple in honor of Xander for Moebius Syndrome Awareness Day. We really appreciate all your support and your willingness to help raise awareness for our little man.

I hope you're all doing well, and thanks for reading this!