Lots of things happening around here. I should have posted weeks ago about this, but haven't. Eli's hands are improving and he no longer has to wear his thumb splints or hard casts at night. His PT Chris has been amazing, in helping us reach this point, and I am happy she is staying on with us throughout the year so that she can log his progress and make sure that we are seeing continuous improvement.
On the 24th of July, Erin, Meg and I were involved in potty talk. That weekend I decided we were done with diapers and that it was time for us to take the leap. Monday was horrible as expected, but after that, it got better and better each day and she stayed dry all day on Friday. She has been doing so well ever since. It was a breeze training her compared to Miss Ruby. And as a plus she has been staying dry at night. We are definitely happy.
One evening, Jed put Emma to bed only to hear her "screaming bloody murder" 10 minutes later. He went up to check on her, it turns out that she had taken her pajamas off and replaced them with her 0-9 month robe she wore as a baby and needed help tying it. She slept in it the whole night. The two things I find somewhat funny is that she stayed in it all night and plodded around in it all morning, not caring that it barely covered her keester.
Eli has started having episodes where he checks out for about 15-25 seconds. His eyes stay pretty much in the same place and he doesn't move and makes a very small swallowing sound and taking very small breaths which causes him to turn a dusky color. And then all of a sudden he takes a huge breath and seems to be fine. Except when he has multiple in a close proximity. We made attempts to call his neurologist, so we called Dr. R and he wanted us to bring him in. I didn't have a car yesterday morning so I called my sister on a whim positive that she had already left to go up to Sandy. (She told me the day before they were leaving at 7 a.m. ) How grateful I was that at 8:29 they hadn't left yet. They came and picked the kids and I up.
We saw Dr. R. He said he looks good other than this problem he is having. He thinks that he is having seizures. We have an EEG set up for him on Thursday so that they can monitor his brain waves and see what is happening. The challenge of this will be that we have to put him to bed one hour later and wake him up two hours earlier, so we will be getting him up at 4:40 in the morning and keeping him awake until 9:30. It will be quite a feat with the fact that he likes to sleep, his episodes make him tired and we have a 40 minute car ride. They said if he falls asleep they can't do the test so we will do everything we can to keep him awake.
I am hanging in there, and the real challenge for me is seeing my sweet little guy having to deal with this. He is so patient through it all. I know that Heavenly Father is aware of my son, and that whatever the purpose of this current trial, we can and have felt His love for us and are assured that we are never left alone.
Walt Disney World With Girlfriends
1 day ago