The doctor's office called on Friday to let me know that Aidan's EEG will be August 5th. We'll have to check in early that morning and stay on the peds floor overnight. I hope that this will give us some insight about which behavior goes with which type of seizure he's having. I just wish this nightmare would end already.
We didn't have a nurse Saturday night because of some mass confusion with the staffing. We had someone on OUR schedule, but the office said it was open and when someone wanted to take the shift, they were told it was already filled. It's just extremely frustrating. It isn't that I can't take care of Aidan- I know how to take care of him as far as his medical needs go. I just get very overwhelmed taking care of him when I'm completely alone with him. It is emotionally draining. I'll be honest, last week when it was just me and him (Evan was at my aunt's), I just laid down beside him and cried. I can't help but remember how he used to be and how he used to make me laugh by doing all kinds of silly stuff. I miss how our days used to be and I'm sad. I'm so unbelievably sad. Anyway, I know this blog is supposed to be about Aidan and not my daily whining and moping... I just have a hard time putting that aside.
Aidan is doing well. He seems more alert to me. He's been watching TV (at least it looks like he's watching). He's been tolerating being capped, and we're working on increasing the amount of time that he is capped, but I think once we downsize his trach tube it will help and make it even easier on him. He's been a little fussier than usual, and I don't really know why. We should be getting the passy-muir valves today or tomorrow as well as his formula supplement so we can decrease the volume and go back to our normal feeding schedule. Feeding him every 2 hours is a pain. Other than that, we don't have any hyperbaric treatments scheduled until Friday, the center didn't have any openings, so unless they have a cancellation we're taking a few days off. It'll be nice not to have to go somewhere every day.
I'd like to thank everyone who's donated money for Aidan's treatments. I know that I have mentioned this, but for now, we've decided to hold off on purchasing a soft hyperbaric chamber. We decided that we want Aidan to do the hard treatments and then at a later point, we may look into buying a chamber. Right now, since we live with my mom, we don't have anywhere to put something that big. Aidan's equipment is already taking up a lot of space and he has to have a room to himself. We are hoping to find a house to rent in the near future, but we can't really make that decision until Russell has a permanent job. We have been looking into other types of treatments and therapies, and I'm considering buying a biofeedback unit. They are usually used to treat pain, which I'm sure Aidan does have, but it's also been helpful with the healing process. I'm not sure how to explain it, I've done most of my reading about it on Abby's website (prayforabby.com) and Dr. Tennent's website.
Once school starts back, the Governor Morehead Preschool program will come in to start vision therapy with Aidan. I've had a referral from our neurologist for another place that does vision therapy, as well. We're still doing PT, OT and Speech Therapy. I got Aidan a hammock swing so we can use that in part of his therapy and the PT table has been made for us. Things are moving in the right direction for Aidan.
Thank you for all of your prayers and support. Despite how bad I've been feeling lately, it helps to know that you all are out there. I just have to keep praying and have hope that my son is going to get better.