Caylah bear is doing well. It has been a while since I have blogged about her. I guess you could attribute that to superstition:) Since Thanksgiving(when we almost lost her) she has had two more infections with pneumonia. The miraculous thing is that she trucked right through them like a trooper(unlike her last bought of pneumonia) She is going on a straight month and a half of Sats in the uppper 80's and 90's, lower vent settings and less medications. She has been having more awake times with us and giving us whole bunches of smiles.

She sat in her chair yesterday. We were so thrilled! We hadn't seen her in a chair since Sept!! It was wonderful..she did very well.. she napped the whole time :) Although, midway through her little adventure, she woke up and realized she was sitting in a chair and startled herself. We laughed and laughed..it was the most adorable moment!!

We had a few meetings yesterday discussing how we are going to utilize the progress that she has made to help her reach some milestones. It has been quite a shock for us to have seen her regress so much since she hawaii. She used to bottle feed, play in her activity center, sit in her Bumbo chair, tummy time with making small efforts to crawl, watch her baby Einstein, suck her paci, bounce on my knee, and play upsy daisy.

Macaylah is approaching her 1st birthday on Feb 9th. Our goals(if she allows us to) are to get her to do at least one to two things she used to be able to do back a Tamc. We meet with occupational and physical therapy this week to discuss a plan. I am so excited to get back to being more of a participant in her care. I look forward to those precious moments together again.

We wish for our little Caylah to continue to make progress. We know that at any moment our lives can change but this is a slow journey with many long and winding roads that we have been preparing ourselves for for the past 11 months. We hope to continue to make this a marathon of good days.