A Family Weekend

I should have blogged about this last time. . . but the three of us had a nice weekend together. Jason was able to come up last Thursday night and he stayed until Sunday night. It was fun to be together as a family for the weekend. This is a picture we took Saturday night (I know I look thrashed, but you know. . . under the circumstances . . . ) It's so hard being away from home and it's especially hard to be away from my amazing husband. He has been such a great father, and I know he would do anything for Gavin - he already does. Anyone who really knows Jason knows that he is a kind, driven, funny and sensitive man. He is already an amazing father.

As for the Gavin update - we found out his auditory nerves to his ears are not there, or are so underdeveloped that they will not function. So, now hearing aids and implants are NOT an option. As of right now (because we all know how information changes on a dime) we think his optic nerve for his eyes are in place. We don't know his visual acuity, but he should have the ability to see. And, from a mother's perspective I think Gavin can see. I don't know how well, but I have watched him follow me just a bit and try to focus. His eyes roll a lot. . . could be a strabismus issue. His breathing is much better. I know it's gross, but when kids don't swallow all of their secretions build up and then they thicken and it's hard to breathe. In Gavin's case, his trach can get plugged with secretions and that seems to be when he "desats" or doesn't get enough oxygen. The ENT cleared out his sinuses and throat really well on Sunday, and since then Gavin has done better. He will still desat, but when we suction him he comes right back up. Apparently, that's an acceptable reason to desat. So, for today . . . it's a good day.

We are so lucky to have an amazing support system. I am in awe at the things Gavin has done to help people already - and he hasn't even come home yet! We love everyone who is helping us through this difficult time. We love you all!