Long overdue

Wow so, I don’t even know how long its been since I’ve posted.  I really didn’t think anyone read this.  Well to update.  Gracie is 3 now, and going to school, when she can.  Currently, she hasn’t been in a week.  She has recently started the ketogenic diet.  She was put on it to try to help get rid of some of her seizures, and help get her off of some of the medicine.  It was a very rough start getting on the diet, and now about 3 weeks into, still rough.  She is having more seizures than ever.  I went into this diet with so much encouragement, hope and enthusiasm, but now, I just hope to have enough strenght to make it through each day.  When we started, she wasn’t a kid who had a ton of seizures, just bad reactions to meds.  Now shes having up to like 20 in a day.  The nutritionist treats me like I’m an idiot, I call her first, instead of neuro, and she tells me to call neuro, what does neuro say, lets take her off the diet. She freaks out, well lets see, maybe there was a reason I called her first.  Then she wants to blame everything else for the seizure, well, monday is D day, one by one the tests are comming back, so far, nothing, so changes are going to have to be made.  I think this diet may actually work for her, or at least help her, if it is managed properly.  We shall see.

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Add a comment April 30, 2009

Progress note

Well, so Gracie had another surgery this past monday.  She had her tonsils and adnoids taken out.  Did ok through the surgery, although we spent about 20 mins talking to the anestisia doctor about weather or not to have it done at all, because she was sick.  He said there’s a risk that she would have to stay intubated and be put in the icu.  The only problem was if we  had canceled it, and some back in a week, a month, whatever, she would have pry been sick all over again.  So they did it, and she did ok, she had some issues with dropping her O2 sats when she’d go into a deep sleep, but they came right back up, as soon as she was messed with.  So that was a week ago tomarrow.  SHe seems to be doing pretty good now, still needs some pain meds, but thats ok.  I’m hoping this will help her sleep better now, and eat.  The ENT said when he got in there, her adnoids we almost totally blocking her nostrils.  ANd much the same with her tonsils, he said they were HUGE.  Partly because her head really isn’t growing like it should.  THat been a big factor of her development, if the head isn’t growing, the brain isn’t either.  Though, she did just recently learn to say ‘mom’!!!! THis comming from the kid who they said would never walk or talk.  THe walking thing still seems to be a little ways off.  If I could just find something, anything that she really WANTS, I think she could at least crawl, she has the strength.  Its just the motivation.  Theres nothing that she really wants that bad to make her want to do something.  She LOVES her dumbo movie, and her binki, but if she doesn’t have them, she will just look at her hands, or play with her foot.  She is learning to play with me and other people.  When she wants you to play with her, make a silly noise, or whatever else she’ll look at you until she sees you look at her, then she’ll look away, then back at you, then away, then back at you, until she gets you to play with her, then she’ll throw her head back laughing.  She’s just getting soo much personality so quick.  She’s also learned to choose what she wants to play with by looking and holding hergaze on the picture she wants.  She’s come so far, and worked so hard to get there. 

She's getting soo big

She

2 comments August 31, 2008
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Cornelia De Lange

Well.  Lets start with me, my name is Jennifer.  I live in Florida, and we’re always hot!  I am a single mother to a very special little girl named Gracie.  Gracie was born with a syndrome called Cornelia De Lange Syndrome, or Cdls.  Gracie was born all of 5 lbs 2 oz, and every bit of perfect to me.  It wasn’t until she was 10 weeks old and started having seizures.  We went to our local hospital, and after six hours and numerous sticks, they sent us home and said she was ok.  An hour and a half later we were back because she had another.  A few more hours and a spinal tap later, they sent us home again, saying she was ok.  Two days later, another seizure.  We ended up at a hospital 45 mins away, then with one blood test they said she is having seizures, and at 10 weeks old, thats not right, so we were transfered to another hospital thats about an hour and a halp away from home.  That is where our lives changed forever.  My perfect little princess was looked up and down by a genetisist.   SHe took me into a room and told me my child would never walk, never talk, basically never be any kind of productive human being.  We were sent home after a week of head to toe testing.  Within about 2 weeks she had surgery on her belly for a malrotation.  Since she has had a total of 3 ear tube surgeries, a feeding tube placed, then a Mic-key button.  Recently she had a Nissen Fundoplication.  She is comming up on yet another ear tube surgery, which will inclued removing her adnoids, and possibly her tonsils.  Gracei is now an independent sitter, who is working on learning to stand.  She has spent much of her life very doped up on seizure meds.  Right now, she is not.  Her personality is getting larger and more goofy every day!  She continues to struggle with communication, although she gets her point across.  She is working with a vision teacher to learn to use her vision.  Gracie also has something called Agenesis of the corpus collasum.  This is where the part of her brain that connects to the two sides is not fully connected.  This has resulted in her not understanding how to use her vision.  In the 10 months since she started with vision she has come a long way, she now makes eye contact, and looks where she is supposed to most of the time.  She continues to light every day with her smiles and silly little giggles.

Gracie

Gracie

2 comments July 14, 2008
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