What a week....and by that I mean of NO sleep! Camerans no sleep is really starting to wear me down, I feel like my body is ready to hit the floor. I have no idea where I find the energy to stay up just a little bit longer.
Last Thursday night was the worst night by far, I don't believe she slept longer than 10 minutes at a time. She was all over the bed flipping and whining then sit up scream at us then we would fight with her to get her to go back to sleep. And imagine this, come 6:30 she was running the floors out and my feet where dragging. How in the world does she keep going like this? You might be saying to yourself well she must get a great nap and that too would be a NO! Man do I wish. If I want her to sleep good I have to hold her and the minute I move she pops up. Or if I just get her down the phone rings waking her and forget that nap she has just now had the best 5 minute cat nap and she is good to go!
This sleeping behavior is only getting worse so I find myself constantly counting down the days till she can have a sleep study done. And I worry of that because any one who has kids know how unpredictable they are. You know, like taking the kids to the Dentist and say oh I just know they are going to scream and then your normally screaming pitching fit child will lay there like a perfect angel and make us look like total dummies! Well I just pray this is not how it goes but our luck would be the night of the study she would have the best sleep of her life!
The earliest they could get us in is mid March and mind you this is just for the Evaluation type deal Dr talking with us about her issues and then they will set up her study which usually takes 2-3 weeks he says! So we are talking another 2.5 months with little to no sleep! I often wonder if she sleeps with her eyes open because for the life of me I just don't know where she gets her energy from....think I need to borrow some!
Now for some more bad news and that is we think she is having seizures in her sleep again. I mentioned this before however I believe its more so true now! The night she was tossing and turning so bad(last Thursday) she did 1 stiffing of her arms again while they raised up and she held it there for about 15-20 seconds....Just like her old ones she did in her sleep. Before we where seeing lots of flinching in her sleep like she also use to do( those kinds read as seizures on her EEG back in Spring last year). I did mention these to her Neuro so we are moving her med around again to see if it helps. If not we might have to add back that weaned off pill or another med. She doesn't do that movement every night, So far I have probably seen 3 of those real stiff ones but we have seen lots of the flinching in her sleep specially when she first falls to sleep. Yeah people flinch in their sleep but when she use to do this when she had the seizures and then became seizure free and we haven't seen any of those for 6 months and then in November we start seeing her do it again it raises a flag. So while we wait for the sleep study we are gonna try to video tape one night of her sleep to see what it shows.
I had voiced a concern last week to her Neuro about how odd it is for her to have theses "movements" only in her sleep and not during the day and his response was not so odd! He said actually its not so uncommon for a child who's seizures come from the frontal lobes to have them more in their sleep. Which in Camerans case would be so true, specially in the last few months of her seizures seemed like she had more in her sleep than during the day.
I took Cameran to the Peditrican Friday to make sure she didn't have anything else going on to cause her to stay awake. Shes had a cough off and on since Christmas but it started sounding kind of croupy again with runny nose. But she came out with just having a head cold. Well go figure that today it looks worse we went though 2 boxes of tissues on her nasty nose and she looks like she doesn't feel good sounds like it too. SO I guess if it gets even worse or comes with a temp we will be back to the Dr.s again! Minus well give them straight access to our bank account.....LOL! Poor gal her little face is so raw from even the lotion tissues. I gave her some Benadryl to help clear it out and maybe help with her sleep as well!
Well that's it for tonight I better head off to bed before she wakes before my head hits the pillow!
Oh one more thing....I did find out about more about her MRI. He answered our questions we had about the Lesion in her Cerebellum. It has NOT grown in size nor has it decreased! So I asked of its size and he said it is smaller than a centimeter. Still unclear of why its their, from birth, seizure????