I can't say that I know much myself, but I can let you in on what I do know. My head is spinning in a million different directions right now and I am wondering who ever told me that parenting was all puppy dogs and rainbows :-P
Anyway, Monday she had just an hour long EEG, no big deal, just a recheck on why she had a few headaches and one big outburst in the month of March. Yesterday the neurologist (Dr. Palat - LOVE her and recommend her if anyone ever has to see one) called me and said that by the looks of the simple one hour EEG things seemed to be getting worse. The seizures (most are silent, some actually show to me) are progressively getting worse. In that one hour time she had one seizure of concern and a bunch of smaller ones...to me it looked like my daughter was laying on a bed bored out of her mind
) She also noticed some spikes in a different section of her brain indicating a migraine. She said with the seizures getting worse she wouldn't be surprised if the Grand Mal seizure would come out, but is also hoping that we can get to this before it happens.
Ella is set up for a 24 hour EEG on April 7th where she will be hooked up to the monitors and they will have video surveilance on her watching her movements. She will be allowed to play in her hospital room, but will not be allowed to go down to the peds playroom :-( That is why I am looking for several things for her to do because I am sure she will get bored out of her mind quickly. I will be with her for the whole 24 hours since a parent has to. I am sure that Adam will come too, but I am not leaving my baby's side.
Dr. Palat is hoping that the 24 hour shows that we can control this. I am so scared of all of the "what ifs" right now that I am not sure what to think. All I know is that I have a very smart, beautiful little girl and I NEVER thought any of this would happen. I am trying to be a strong mommy for my little girl, but since I actually know what is going on it is harder for me. When I told her yesterday (while we were making cookies) her response was "what color sprinkles should I put on my cookies." Obviously she is worried :-P
Thank you for all of the thoughts and prayers, they are more appreciated then you will ever know. My baby is too little to be dealing with any of this.
Also, I am really open to ideas on things to keep her occupied in the hospital room...apparently she can get out of bed, she just has to stay where the video camera can see her. Thanks!
Re: Ella update
Huge, huge hugs Ally! This must be so rough on you
( I'm glad Ella is dealing well with it, and I hope the 24 hour observation gives you the answers you need.
As for activities, all I can come up with are movies, craft projects, coloring, and reading. Maybe you could even read a chapter book with her and read it out loud in smaller sections while doing other things in between?
HUGE HUGS!!!
Such a trooper! I'll make sure to say an extra prayer for her & You all!!
I don't know if they still make them, but I remember my sister and I making like hot pads on this thing, it was nylon strips and you had a loom type of thing, and it had hooks or something to attach, and you weaved them in and out. Like I said, I don't know if they even make that anymore. Could you get beads? have her make braclets for the nurses/doctors/Jovie/Daddy?
Puzzels? her own hospital scrap book?
Wedding 6.18.04 Cole 11.20.06 Gavin 3.31.08 Parker 07.15.10 Logan 04.03.12
I'll keep all of you in my prayers. That has to be scary for you, I'm sure. I don't have any crafty ideas off the top of my head right now but I'll brainstorm for you!
Married 10.11.08
Baby LJ 05.21.10
TheRookieChef.com
Lots of prayers for little Ella. I didn't realize she was having trouble again
I'm with Little Bug - have her pick out a couple of craft kits at Michael's or Hobby Lobby. Something she can leave out and keep coming back to all day, to make things for different people.
Prayers, Prayers, and More Prayers.
I replied to your FB status earlier but I will keep thinking. *hugs*
Prayers to you and your family. If there is anything I can do, please let me know. Other have given you great ideas, I agree with all of those
I also have a portable DVD player if you'd like to borrow it.
Good Luck!
Oh man, that's no good! At least they are working towards answers though. I think you've done a great job staying strong so far!
I can't think of anything else to suggest that PPs haven't already suggested to keep her occupied.
Lots of Ts&Ps heading your way. You are such a strong and wonderful mama and I'm sure that is helping Ella so much. (((HUGS)))
Neena Mae. 1/7/10
"A baby nursing at a mother's breast is an undeniable affirmation of our rootedness in nature." - David Suzuki
I've seen a few of your posts & have been hoping things are okay -- or that Ella's situation improves soon... Glad to hear you have a doctor you trust & like; that's got to be helpful at such a stressful time. T&P for Ella (and you!).
What about wrapping up various crafts, books, CD's, games, etc. in individual packaging (my favorite is tissue paper & pretty curly ribbbon) and writing times on the outside of each indicating when they can be opened? You could even put a little picture/drawing on the outside of the package showing what the clock will look like at that time (10 AM -- hands point to 10 & 12)... Could be kind of a fun thing to look forward to as the hours pass... Then you could "time" the packages for what's appropriate at that time of day/evening. Maybe check out some books/DVDs/CDs from the library to wrap up... Or fun jammies for bedtime... A craft project for the afternoon... Nail polish for a mini mani/pedi session... A blank book to write & illustrate her own story...
Hoping everything is resolved soon!