Sorry it has been so long since the last update. Always something to do! We had to make a last minute trip to Children's on Monday. Our primary nurse from the hosp called us on Friday and ask that we be at the hosp Monday morning at 8 am for Reagan to have a scope to see if she had any scar tissue! So, off we go for Reagan to be put to sleep again. Nerve wracking but, praise God, she did very good and they did have to remove scar tissue from around her stoma hole. She had two pieces the size of grapes blocking her airway! That would explain the constant desating! They kept her overnight and we got to come on Tues. afternoon.
We are now able to hear her sweet voice and are very thankful!!!! She has not been able to talk to us in months! She would get frustrated, we would get frustrated, it just was not good for anyone! Now she is able to wear her passy muir valve (Mr. Talky as we call it) and we can understand her perfectly. God is so good! Even on my bad days I know He is watching over her.
She has been staying off of her vent during the day! She is still not tolerating the trach collar at night, so that has not been any fun. It is just too noisy! I say you can hear it next door it is so loud! Maybe soon she will start tolerating it so she can be closer to getting off of the vent. She is so smart! She will ask for you to put her back on her purple ventilator! She will cry and hold her breath until you do!
If she stays healthy, and we are praying that she does, she will not have to go back to the hosp until January.
She is still moving her left arm and legs pretty good. She doesn't have any strength back yet so instead of ordering a power wheel chair we went to get measured for a bigger stroller today. She and all of her vent stuff have grown and she hardly fits in her stroller anymore. They said it could take 3 months for her to get it! Glad we are not in a hurry!!! We are praying the she just continues to get stronger and stronger.
Big brother is doing very good and is cute as a button. I will try to put pictures of the two of them the next time I update. Hopefully before next year! Thanks for the thoughts and prayers!
Reagan's Mommy
