Holy cow! CeCe will be 5 months old tomorrow! Sorry for such a long delay in posts, but this really has been a case of "no news is good news"!She has come so far in such a short while. She came for a SURPRISE visit to my work today...I got giddy when I saw Brian bringing her around the corner. She had been snoozing in the car and hadn't awakened fully yet...she's such a cute little sleeper.
She had her weekly PT visit yesterday and she is doing really well. We still have to do her exercises several times a day to keep her movement and strength up, but she is responding very well and they are pleased with her progress. She has "graduated" to 10-15 minute intervals in her exersaucer and some time in her Bumbo seat...all this is to help strengthen her core and neck...but also to give her some different views of the world. She loves to be on her belly...but only to sleep! We try to put her on it to get her to lift her head and tone everything up, and she abruptly falls asleep almost without fail.
She's potentially got some big changes coming up. She goes back for another round of check-ups May 6-13. The ENT is first (and sort of the most important this go around) on the 6th. He will scope her and determine if she her vocal cords tone and movement have come back enough for her to be able to attend school and for Brian to go back to work. Her stridor is still present now and then and I'm truly not sure whether she'll get the thumbs up or not...We want to make absolutely certain she can withstand a cold without putting her airway at risk. She also has a neuro follow-up on May 5th (I think) and her very first sb clinic on May 13. She'll get to meet with all her docs in one place there and some for the first time. If all of these go well, she will start school (where Caroline goes) on May 16th.
Sidenote: I "met" the mom of another kid with sb and she says she never capitalizes "spina bifida" because it gives it too much credit and I've decided I'm going to do that too...I like the way she thinks.
Anyway, that's about all that's new in our world...please pray for her in the coming weeks and for the doctors to give us strong direction.