Back in the hospital!!!
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Paige was admitted on Thursday because of increased seizure activity, she will probably be here through Tuesday. Up till yesterday Paige was basically having seizures all day long. It was horrible, she was doing so much better. Right now she is getting seizure meds, fluids and antibiotics through an iv. This evening will will give her the weekly dose of ivig through an iv. We really aren’t sure what caused this increased activity.
Today we brought a little Christmas tree in because it’s almost Christmas and we are seriously lacking the holiday spirit this year. Hopefully we get an early present and her eeg improves.
We have had amazing nurses during this stay at Columbia, Abbie and Cassandra have been unbelievable. they are so friendly and helpful, it makes this experience a little easier to handle.
The eeg techs here are also amazing, it is horrible to watch them hook Paige up but they are so gentle, quick and friendly.
I was desperate for some attention spent some time in the emergency room last night because of my back, they pumped me full of meds and said that I might need surgery for the pain.
Our adventure continues…..
Paige’s Benefit
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Paige’s benefit was last Saturday and it was amazing!! We sold over 300 tickets but we estimate that over 400 people showed up. We had a great DJ, a guy who made balloon animals for the kids and the Skel’s rocked in the evening. Annette and I were so touched by the turn out. We could have never pulled off this event without the support of so many local stores.
Paige visits the ER again
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Paige had a difficult weekend, she was screaming and fussy all weekend long so on Sunday, I took her to the ER and it turns out she has an ear infection and sinusitis again!!! So she is back on antibiotics and we expect that in about 2-3 days she will be herself again. We have always found it interesting that Paige seems to do so well on antibiotics…..guess only time will tell.
16th Video EEG
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We are at Columbia New York with Paige for her 16th or so video EEG!!! Basically, after drawing on her head and marking specific spots metal leads are glued to her head, her head is then wrapped and they record her brain waves for about 24+ hours. It is not fun watching her hooked up because she fights and screams but I will say the EEG tech today was AMAZING, this is the first time I have left the treatment room without a migraine headache!!!! Paige is finally asleep and I think all the leads are still attached to her head which is also a amazing. Hopefully tomorrow I am told there is no seizure activity and her background looks better.
Here are some video’s of what a video EEG is like, clearly it is not something you ever want to experience.
http://www.youtube.com/watch?v=R4Y1wkoKjEQ
http://www.youtube.com/watch?v=5cadY7AJilk
http://www.youtube.com/watch?v=WmYuRBi_IgM
Feelings on the weeks events
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It was an extremely emotional week for us, we could have ended a drought with all our tears. But we still have hope because in spite all all the Paige cannot do, you can see a girl determined to walk! Paige does not give up, she will try to pull up on everything, she crawls everywhere, she smiles, laughs and tries to play with things and really wants to hold things. I believe that she has the ability do all the things she wants but her body limits her. We talked about meds for her movements but the sad thing is those same drugs might turn her into a rag doll, which is unacceptable.
When I look back at the past 2 years I sometimes wonder how I have survived becuase i never considerd myself a strong person. When she was born I use to rock her to bed and tell her about all the things I wanted to do with her when she got older, you know all the typical father/daughter things. Maybe one day I will have to accept that she will never do those things but not just yet! And even if my prayers are not answered it won’t really matter because I will give Paige everything she needs to have the best possible life.
The thing I have really learned and I hope everyone really understands is that life is so precious, I never thought about how much really goes into walking, talking or even chewing. Things each one of us does daily without much thought Paige struggles to do. The second is that if you have healthy kids treasure them, enjoy going to all their games even if it every night, chase them around the house and play with them.
So what’s next, well we’ll patiently wait for the results, Paige will return to the NIH in the near future for some additional tests. I am working on trying to get Paige to Rome and be blessed by the Pope. That might be difficult but nothing is impossible. So if anyone knows the Pope, tell him that I will be calling!!