Dominic's Story: We are here!

Thursday, August 6, 2009

We are here!

We made it to Germany (Frankfurt) yesterday around noon and decided to take a taxi instead of the train to the hotel. Who knew that a 10 year old could stay up the equivalent of all night? We were all too tired to navigate the train system as Dominic did not close his eyes once during the entire 9 1/2 hour flight. We arrived at 4:00 a.m. Denver time and no one slept all night. I have to say that for someone with no sleep, he did not fuss or whine once. What a trooper! We did take a good nap after getting into our hotel room.

We are on our way to Munich tomorrow for a relaxing weekend before getting to the clinic. Dominic seems nervous about the whole ordeal as he does not want to leave the hotel and does not want to go to Dusseldorf. I think he is worried he will get the spinal headache like Harrison did. I do not know how to reassure him about this. He has been very brave and I know he will do well.

Thank you all for your thoughts and prayers. Please send them our way on Monday and Wednesday. We will keep you posted.

2 comments:

UnknownAugust 6, 2009 at 6:49 PM
My prayers are with you!!
May God bless your son and his disabilities go away.

Please let me know how it goes as I have a son with CP also and I would be very interested to do the same procedure.
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AnonymousAugust 6, 2009 at 9:35 PM
Hi to the 3 Kings in Germany.
I met Harrison at the airport this evening. He had a great big smile and looked terrific! Mom and Dad looked a bit tired! Hopefully Dominic won't have the spinal headaches, but even if he does, he's a strong boy with an amazing family that will help him get through anything. All my thoughts and prayers are with you!
Love,
Fran
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Dominic's History

Written by his mom

Dominic was born in Scottsdale, AZ on October 29, 1998. My pregnancy was normal and there were no scares until 4 weeks before he was born. I reported to the nurse that he was not moving as much and was assured that this was just because he was getting bigger. On my next appointment two weeks later, he still wasn’t moving much and I saw my doctor this time. She wanted to put me on a fetal heart monitor just to be sure. Dominic’s heart rate was showing signs of distress. I was sent over to the hospital for fluids and oxygen to see if this would help Dominic recover. It did not and by 7:00 the evening he was born via emergency C-section. Everything looked good. He was pink, his Apgar scores were 8 and 8 and there were no worries.

Then, he went to the nursery for the standard testing and it was found that his blood sugar level was 17 (it should have been around 85). Dominic spent the next 15 days in the NICU trying to stabilize the blood sugars. While he was in the hospital, he had spinal taps, brain ultrasounds, and many other tests. When he was released, the doctors did not feel there would be any long term effects from this event.

By about 6 months old, my husband and I started to notice that Dominic was not doing what other babies his age were. We began a very long journey at this point. We got a referral to a neurologist and at 10 months old, an MRI of Dominic’s brain was ordered. The doctors had not discussed any possibilities or problems with us. When we went to check in for the MRI, however, at the top of the sheet on a sticker, it was printed that a probable diagnosis was Cerebral Palsy. We didn’t really know what that was, but knew it was serious. When I asked my husband about this, he thought that they just had to put something on the form for insurance purposes.

Long story short – Dominic did and does have Cerebral Palsy. He is very impacted physically, but cognitively, he is doing well. He is in fourth grade at our neighborhood school and participates in the regular classroom over 80% of the time. He has playdates, goes to birthday parties and enjoys being a “typical” fourth grader. However, he is in a wheelchair that he drives with his head, he uses a computer that he controls with his head and he has difficulty speaking. But he has the best attitude around. He does his school work and then therapies and tries to keep the complaints to a minimum.

Dominic’s form of Cerebral Palsy makes it hard for him to control his muscles. He gets too much input for his extensor muscles and not enough for the flexor muscles, so he looks like he is extending his limbs much of the time. This makes it difficult for him to use his hands, arms, legs and feet.

We are hoping that doing these treatments in Germany will help him relax and control his muscles so that his overall movement is much more smooth. This will help him do schoolwork, move a wheelchair, make speech easier for him and for him to possibly start to use a walker.

Dominic’s attitude is so good and he is such a strong person, that even if these treatments do nothing for him, he will be fine. But what if they change his life …..

Thursday, August 6, 2009

We are here!

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