Paula called me last Wednesday, from vacation, out of state, on her cel phone... She's AMAZING. She wanted to make sure that Dr. Neuro had contacted me since she had forwarded all of Dylan's information and videos to him. I told her she had and she asked if I was supposed to call her, I told her no. The doctor and I decided that she could have her vacation, he would touch base and she could deal with it on Monday when she was back. To which she responded "Well, I am not back until Monday night." Yes... okay! Apparently that was far to long for her to wait until Dylan was taken care of!
She said she was pretty sure she could remotely access Dylan's information where she was to start the insurance approval process on Friday. She was hoping to have medication in our hands and the process started on Wednesday! That's amazingly fast!
I told her we were okay waiting, she needed to have a break and relax, something tells me those words fell on deaf ears.
After much thought, I think we are leaving Duncan in preschool while Dylan's on ACTH. I had spent some time thinking about it myself and then Jess and I went shopping on Black Friday and talked about it some more. Also having thought about t she pointed out that this probably wouldn't be the last time that something like this will have to happen. It also wouldn't be the last time that we will have to quarantine a kids or two away from the others. She's right. And Duncan and Dylan have little interaction really. Ian and Dylan are a different story, so hopefully the little one doesn't get sick.
Jill also made an excellent point that if we were to pull him out, this would be the very last time we could before he actually noticed and knew he was pulled because of Dylan. That's so true. We could totally get away with it, just this once.
So I got him some of that nifty hand santizer that hangs from places and I will put it on his backpack, we have some in the car, and I will just bring an extra shirt and change his shirt when he gets out of school. It's really all you can do right? I am pretty sure the school is careful about washing hands and "making boats" for hand santizer and I personally think the fact that neither of them have gotten sick yet is a great sign!
So I will have to talk to the manager of the school on Tuesday. I know the government is responsible for getting them in school and getting them the best education possible so I am not sure what they will say, I mean... I know it's up to me, I am just not sure if I have to do a waiver or something for a couple of months. We shall see. She's grumpy anyway, they don't want her again until she's happy.
Honestly, at this point... all I want is my happy little girl back too! I thought it was the ACTH making her miserable last time but I am beginning to think that it's a combination of the IS and the ACTH. She has been far from charming for over 50% of the day these days. Poor kid. We figure if she's going to be grumpy and miserable we were going to make it a productive grump and miserable and throw the ACTH on top!
We have Trina lined up for the shot all except 5 days over Christmas where we will either buck up or (more likely) have Suzie come over and do them.
I also wanted to mention that the little HPE guy that I mentioned in my post that is on his third round of IS started Sabril and has been (IS) seizure free for over a week. After 18 months! Mom said she is amazed at how much he is laughing now. I am so happy for them and I am seriously knocking on wood over here! I was so happy to get this update from her (and also her note of encouragement on starting ACTH's miserable process again), I just had to share. So happy for them!
No comments:
Post a Comment