Up All Night

Poor Myra.

I wish I knew what she was feeling.

Pain? Restlessness? Agitation?

No one has gotten sleep since we changed her dosage of ACTH again this past Thursday. She is having trouble getting to sleep and staying asleep. Then, when she finally seems tired enough to fall sleep, her body jerks her awake....Over and Over and Over again! I'm not sure if these are some type of myoclonic seizures or just startles or something. But, I hate them. They are just making this whole experience worse. Myra also seems to have these "shakes." You can't see her move, but as you hold her she is almost shivering. It isn't all the time, but I've noticed it a number of times in the past few days.

My poor baby.

Paul and I have starting taking "shifts" in order to get sleep. It's almost 7am and I've been up since 3:30am. Myra has slept about 20 min in there. Paul was supposed to have her from 8:30pm to midnight. I'm really hard to wake, so when she fell asleep around 1am, he actually still had her....sorry, Honey! So, she got a whole 2.5hrs. Oh, the days when she slept 7 and 8 hours... how I long for you!

I just feel so bad for her. I have no idea what it's like to have a seizure, but I'm sure it's not pleasant. I have no idea what her abnormal brain activity feels like. I have no idea what she can see, how she perceives the sounds she hears, what she can understand.... At nine months I started teaching my babies sign language. Myra isn't able to do signs herself at this point, but I plan to regularly do them for her. I hope they will allow her to be able to understand what is happening, predict what will come next. We touch her chin before we put anything in her mouth for "food" or "medicine." Now, when I feed her solids she often times will open her mouth after I touch her chin! She gets it! I have also started to do "milk" by squeezing her hand twice before I nurse her. And I do "finished" with her hands when she is done eating. Sign language has been awesome for my other kiddos, so I suspect it will help Myra. I've always wanted to learn the entire ASL language. Well, God gave me a visually impaired child instead of a hearing impaired child. But, I still think teaching signs a little differently than I have before will help her understand us better and eventually allow her to communicate with us earlier. Helen Keller, hello?!

For now, she is starting to fall sleep in the sling. Do I even attempt to lay her down when the other four kiddos will be getting up in the next hour? Plus, I've already tried to lay her down twice since 3:30am and both times she woke up immediate...WIDE awake...

Sigh.

Morning to all of you who got a lovely nights sleep! I hope I'll be going back to bed soon.

Happy Birthday USA, I don't feel like celebrating you today, sorry. Thank you troops, who do more than we could ever understand!

Night.