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
Video’s of Paige’s Experience at the NIH
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http://www.youtube.com/watch?v=x_6YOf4Q8ag
http://www.youtube.com/watch?v=vNCcyBoueP4
http://www.youtube.com/watch?v=OX7lQ2KhauE
http://www.youtube.com/watch?v=UYelMKq0OY4
http://www.youtube.com/watch?v=oQxzfaefBVs
Paige on Fox 5 10pm News
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http://www.myfoxny.com/myfox/pages/News/Detail?contentId=7700288&version=2&locale=EN-US&layoutCode=VSTY&pageId=3.5.1
Paige on Good Day New York
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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!!
NIH Wrap-up Day
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Paige’s day began with OT at 9:00, we found a few today she actually like to hold on to, one was called a pop toy or something like that 
Of course we’ll be running out this weekend to buy everything we can find what that texture!! Next was PT, Paige did some good standing and they said her feet are in good shape. They felt that braces weren’t right for her but gave us inserts for her shoes, they do not seem to bother her and she has been stepping nice. Paige also visited the dentist and her teeth are in great shape.
Our wrap up session began at 12 with Dr. Gahl, Gretchen, Michele and several other doctors. Dr. Gahl began by asking us if we had any questions/concerns that we wanted addressed which was really nice to know they really listen to the parents. They also made us feel REALLY good by saying that Paige has been seen by some of the best doctors in the world and they were honored that we turned to them for help considering who we have seen. My opinion has always been that the NIH is the best medical research/treatment facility in the world so of course we turned to them!
Due to the fact that we have not yet arrived at a diagnosis much of the time was spend with us asking questions about there thoughts/feelings on Paige and what to do next. Paige’s blood is on it’s way to Baylor for more genetic testing and the NIH will be running a genetic test that is not available on the outside. We hope to begin receiving the results in the coming months. We discussed some alternative/treatments and those will be discussed again in the future based on the outcome of her testing. So basically we will continue to provide with as much ot/pt and speech as possible. We will take what we learn from them and work with Paige ourselves.
So while we did not receive an answer we do know that Paige is in great hands!!!
NIH Experience
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I didn’t really know what to expect when we arrived here, of course we wanted an answer but we also wanted it to be an answer that we liked. As our time here comes to end tomorrow, we are hopeful that we are closer to ending the mystery. Paige’s blood is being analyzed for more mitochondrial conditions and we hope to have the results in the coming months. But they are also investigating other potential causes. One of the doctors today mentioned that they do see 1-2 children a year who experience severe side effects to illnesses.
One of the only positives i can find after two years of searching is that we have been extremely blessed to have met some of the nicest and kindest medical professionals in the world. i know that i have mentioned this before but the people we have met this week have gone above and beyond to make us feel comfortable. They were there to support us when we were sad and were more than willing to answer all our questions two or three times.
We believe we might be back here in the coming weeks for a day so they can run some additional tests on Paige that could not be scheduled this week. So our NIH journey might continue………
Day 3 at the NIH
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Another long day has come to an end. It’s 9 30 and Paige has finally fallen asleep. I must say that she has been extremely smiley since about 6pm tonight. It was so nice laying next to her and watching her smile as I sung to her, and trust me I am not a good singer!!
Paige had a swallow study today and it seems that she isn’t moving her tounge, which considering her movement issues, isn’t all that surprising. After that we met with PT and we discussed some new options for her in terms of devices that might help her move around better. We were also given the names of some doctors in Jersey we can see.
The next appt was with a movement disorder doctor and his thoughts will be discused tomorrow but we anticipate some ideas on how to improve her movements. This would be a huge step for her becasue it seems she really wants to walk and play with things but her body gets in the way.
Next we met with neurology and there was about 10 people in the room with us. This was the critical appoitnment because we were anxiously awaiting the results of her MRI. After about 45 mins of discussing Paige’s history we found out that her MRI looked just like the one taken about 6 months ago. This was a relief for us because we were so afraid they were going to tell us it had gotten worse. They requested her first MRI so they can compare how her brain has changed since the initial MRI about 2 years ago. Our final meeting of the day was with nutrition, Paige is in the 25-50% for weight and 50-75% for height. Not a bad place to be, so there are no concerns about her weight at this time. Paige can continue to enjoy Balducci’s without having to worry about her hips.
Day 2
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Paige had another long day today!!! She was sedated for about 3 hours for an MRI and several other tests. We also met with an immunologist to discuss her immune test results and if it was possible that an infection could have caused her condition. We expect to discuss this further later in the week.
I really have to mention again just how wonderful everyone has been to Paige!!! Our floor nurse today was soooo nice, and i cannot even begin to describe how wonderful the members of the program have been to us. I do not think there are words to describe them!!!!!
Tomorrow is a HUGE day for Paige as we will be meeting with a movement disorder specialist and neurology. Hopefully all goes well.
DAY 1 AT THE NIH
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Well day 1 is over, it began about 7am and ended just after 6pm. We found out today that there appears to be a problem with Paige’s optic nerves and that she might not be seeing good!! Obviously this was extremely upsetting!!!! Tomorrow will be an extremely busy day, Paige will have her 6th MRI and maybe another LP (spinal tap) plus some other tests.
The only positive to come out of today was that we met some amazing doctors and nurses! Everyone here is been so kind, friendly and supportive!!!!
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