We put Jayden in the bed with Analeigh from time to time because we want her to start learning him. I don't know to what degree she will be capable of recognizing and understanding her relationship to him, but it won't be because we didn't try. Sometimes she doesn't seem to mind him being close to her and other times, she looks anything but happy... but I know these pictures will also be special to us for years to come!
Here is my sweet girl in a beautiful dress I found at Sears when we were there taking Jayden to have his 2 month pictures taken. As soon as I saw it, I knew she would look gorgeous in it... so when we got home, her nurse Mary and I dressed her up and took a bunch of pictures. As you will notice, she is now wearing her hand splints and also AFO's. She's tolerating them pretty well, I think, and I'm hoping they will really start to do her some good!
I dressed her cousin Trinity up in the same dress and took some pictures of her so I could put them side by side. Makes them look like "twinkies" lol. So adorable! <3
And here is my sweet girl today... She's had a pretty decent last few months and only one short hospital stay since her last one back in July. Her GJ (feeding tube) accidentally came out and had to be replaced. While she was in the hospital to have that done, it turned out that she had another case of strep pneumonia and had to stay and extra couple of days for IV antibiotics. Also while she was there, she had an MRI done. It was originally scheduled for the 3rd of November but was done instead on Oct 31st... The results from the MRI were not what we had hoped for. Her brain shows no progress and no further damage. I asked her neurologist a series of questions and basically his opinion is that she will inevitably start having seizures, will most likely never come off the vent/oxygen/trach and probably won't ever learn new things (such as walking or eating).
It's now Nov. 20 ~ we went to go see the pulmonologist on the 18th. Her CBG looked good enough that he wanted to wean her breath rate on the vent down to 12 from 15 and her oxygen from 1.5 LPM to 1 LPM. He made the changes in his office before we left but tonight/this morning rather, I had to go back up on the breath rate to 15 again. While her sats look good, her respiratory rate has been elevated and just by watching her, her breathing seems more labored. I left the O2 setting at 1 for now and we shall see if that will last or not... I asked his opinion about what the neurologist told us regarding her ability to ever come off the vent and reluctantly, he admitted that he supports that assumption. He said we'll do our best to wean her as much as she will tolerate in hopes that it will happen one day but in his experience, it has not happened before with any other patient he has treated with her conditions.
Well, that's pretty much where we stand right now. I am too tired right this minute to go into much more detail but wanted to post an update before too much more time goes by.
