Good news; Bad news

First off the good news...

Aybra has had a few appts since my last update on her. She was off of all of her meds but now she is back on one of them, which is bad news but hopefully within a month she will be off of it. She is off of her monitor though. That is great news. Her last weight was 13# 9oz at the doctor. She is 22 inches. She is still only rolling from front to back but I think she might start rolling the other way soon. She smiles and laughs a lot and is starting to get interested in toys. She loves to play with her brothers. She thinks they are a lot of fun.


Kaia has just been Kaia. He is quite a happy, outgoing little boy. He is very smart, sometimes too smart for his own good. He is doing well with his glasses. He doesnt mind wearing them, but will often take them off so he can play dress up. He is doing fantastic in his school work. He can now write his name "Kaia" and the numbers 1-5. His 3 looks more like an "M" but we are working on it so I think he will have it down in no time. His speech is improving, though strangers still have a hard time understanding him. I admit some of that is my fault because I do not approve of him playing with some of the children around here in our complex so I keep him away from them. (Their parents allow them to play with toys that I do not allow Kaia to play with and they play too rough and are much too mature for Kaia.. I would rather Kaia not play "spitting on each other") So, his main source of interaction with children is from Alo (and he doesnt talk) and from my nephew. I really do not have a problem with it though. I would prefer Kaia to be more into imaginative play than the spitting, or weapon play. Children these days are forced to grow up too fast so Im just letting Kaia be a kid for as long as he can.

Alo is good and bad news. Bad news first.. He is sick. He has the trach heebie jeebies. He had an appt last week and they took a culture, but it has gotten much worse this week and tonight he started running fever so if he doesnt make improvements with that then we will have to take him to the doctor. I never talked to the doctors after the culture so Im not sure what, if anything that he grew out from last weeks culture. Im just praying that he will improve and we will not have to go to the ER. He has been doing great for almost a year. His last hospitalization was 10 months ago. This is the longest EVER that he has been out of the hospital. The good news is actually excellent news. He has been working with PT as I mentioned in prior blogs.. He started about a month and a half ago and already is making great strides. He is able to put some weight on his feet. He is tolerating his stander very well and will actually use it to support himself in a standing position without crying! He is also learning how to pull up and stand at the coffee table, though its kind of a half-stand as his arms are doing a lot of the work, but even just a few months ago I did not know if he would even be able to do that. Ive got a video of him doing it but will have to wait until later to upload it.