Surgery

Surgery

Kylee is scheduled to have her adenoids taken out and new tubes in her ears on May 5th. It is funny how Dr's don't know there schedule. He told us he was going to try to get her in last Wednesday and if not last Wednesday then this Wednesday. When the lady called he had no openings until May 5th. So that is the big day. I am hoping this will help with getting rid of some of the ear infections and maybe help her eat orally a little better also if she is not so clogged up with junk.

Eating

Eating has not been going so well lately. Ever since we took her to the dentist to get her teeth cleaned she will not let you near her mouth. The school speech therapist has decided to start all over from scratch with her. Which means no orally eating but just getting her to be less defensive about have thing around her mouth. This is no unusual for Kylee. Every time she gets sick or something "upsets her life" she regresses in eating. We have however started to fee her thru her feeding tube into her stomach instead of her J tube and she is doing pretty good with it. She can take about 6 ounces right now which gives her an extra 3.5 hours off her J tube feed which is nice. So we are just going to keep working on trying to increase that number so she can spend less time attached to a tube.

Turning Blue

We have been having some issues with Kylee turning blue when she sleeps. The first time it happened in a very long time was on Easter Sunday but she has had it happen several times since then. I can't really figure out what it is. Her oxygen level and heart rate are normal so I wouldn't think it is sleep apnea. She gets lots of fluids so I would think it was degradation and the last time we saw the cardiologist she said her heart looked great. So can't figure it so I had to call in some help.....have a call into my Gurdian angel Deb at the special needs clinic. I thinking it has to do with circulation but not 100% sure.

Night Away

Friday night Jason and I are taking a well needed night away. We are going out for supper and drinks and then spending the night at a hotel in Appleton. Not to far from home but just enough for a little get away. We are so thankful to have such wonderful nurses that are helping us out so we can get this time away and such wonderful family that are helping with the two boys. We would be lost without them. Thank you.