Merry Christmas
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Paige and Jake had a wonderful Christmas, Santa was very good to them and the Elmo’s in our house now outnumber the people by 5 to 1. Jake loves his Elmo. Paige received so many nice today and some adorable outfits.
But the best present was just being together and having her with us. Going through this experience makes you realize that all the presents in the world are meaningless if you do not have your loved ones to share them with.
Christmas Eve
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We had a wonderful Christmas Eve together, Paige finally fell asleep at 11 30, but I am not complaining because she was laying on me and I read her some Christmas stories and sang some Christmas songs to her. Tomorrow we’ll open the presents dropped off by Santa
Paige on Good Day NY Today!
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Back at home and preparing for Santa
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It is so wonderful having the family together and we begin final preparations for Santa’s arrival. We have our magic raindeer food all read for the 24th but I know Santa would never pass up Paigey, now Jake, well that’s another story 
Actually Jake is a wonderful brother, he always kisses and hugs Paige. Tonight, i was resting with Paige on the couch and Jake snuggled next to us and Paige to rub his head. It is those little things that give Annette and I hope!!
Tomorrow evening we’ll take Paige and Jake to the mall to visit Santa and to pick up some last minute presents. Paige will also be on Good Day NY tomorrow between 7:30-8am
Paigey is home!!!!
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Paige was discharged yesterday!!! Since being home she has been smiling and eating very good, we are all excited and looking forward to Christmas at home! But I cannot forgot all the other children we met that will be spending Christmas in the hosptial. Please keep them in your prayers!!!!
Hopefully today or tomorrow we’ll take Paige and Jake to see Santa and finish up our shopping.
December 19 Update
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Today we found out that Paige’s lactate was normal in her blood and CSF which is a very good thing. They also found white blood cells in her CSF and there shouldn’t be any there so there are funning more tests. The good news is that we are going home tomrorow so we’ll be spending Christmas at home.
December 18 – still in the hospital
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Paige begins her 9th day in the hospital, Christmas is quickly approaching. Annette dropped off a little Christmas tree for us a few days ago. This tree has been in my room since I was a litte boy and now it will always be in Paige’s room.
Paige had her LP aka spinal tap, basically the doctors stick a large needle in your spine and drain some of the fluid. Of course she was sedated for this, I believe this was her 17, 18 or 19th time being sedated but who is counting. She also had at least two blood draws today and is once again hooked up for another video eeg.
Tomorrow, we should learn the results of the mri’s, spinal tap and some blood/urine tests, lets hope all turns out well.
Paigey is now sound asleep and snoring like a little angel so I will now sneak into bed and cuddle up to her and keep her safe and warm on this cold winters night.
December 17, 2008
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Paige had her mri this afternoon, I met her in the recovery room and she began to wake up. A few minutes later they said she was being sedated again for a 2nd mri w/ contrast and a spinal tap, it seems they noticed changes in Paige’s brain. At this point we know very little except they noticed changes in a part of the brain that they never saw before. The doctor said this is the part of the brain where Paige’s current seizures are coming from. There are many reasons there could be changes here and since we aren’t sure yet, I will hold off judgement for now. Still it was a very difficult night and I still feel sick to my stomach. Obviously, we arent’ going home today.
Tuesday – December 16
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Guess where we still are? You guess it, the hospita. Paige is no longer hooked up to the EEG which is a good thing but today we noticed that she is still having many focal seizures. So they are trying some different drugs on her and so far I have not noticed any this evening. Paige might have the MRI done tomorrow and there is a slight chance we might go home in the evening. But she is eating again and smiling more, so that keeps me going.
Santa visited again and tomorrow night there is a holiday party on the floor. We had two more great nurses today, Kenya and May. Congrats to CHONY for finally hiring great caring nurses!!!
Paige is sleeping peacefully, so it’s time for daddy to snuggle up next to his little princess.
5 days and counting…..
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Paige is still in the hospital but doing slightly better. No seizures today, but she is not back to normal. She hasn’t eaten since Thursday and while the food here is HORRIBLE, Paige will typically try anything. I am still shocked that a children’s hospital this size does not permit patients to order meals, someone needs to let them know that children do not all eat at the same time!!!!
She was more alert today but still really congested so we are here for at least another 2+ days.
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