Dominic's Story: First Procedure Is Done!!!

Monday, August 10, 2009

First Procedure Is Done!!!

The bone marrow collection is done. Dominic was awesome!!! He shed a couple of tears and screams right before going into the treatment room, but who wouldn't? The other kids that were there did it too. Luckily, we called the clinic this morning to find out what time they would pick us up. Our appointment was scheduled for 2:30 and they told us they would be at the hotel at 10:45. Turns out, they rescheduled the time, but did not bother to let us know. Dominic actually slept in to 9:30 and we wouldn't have made it if I didn't call. They are very laid back here.

Once they took Dominic to do the procedure, it only took about 1/2 hour. The process beforehand, though, took about 1 1/2 hours. He still has not eaten today (neither have we) and it is after 3:00 p.m. Steve is out getting food right now. It will be the same on Wednesday.

Dominic feels good right now; a little tired and very hungry though. Tomorrow we will probably take a Rhine river cruise and look at the fancy shops here. Then it is back to the clinic on Wednesday and lots of rest after that.

We met a family from Florida before Dominic's treatment and a family from Wisconsin that was after Dominic. I think the word is getting out in the US. Let's hope things happen quickly back home for this type of procedure. Hope everyone has a good couple of days and we will update you again on Wednesday. XXXOOOO

4 comments:

AnonymousAugust 10, 2009 at 10:26 AM
Great to hear the first part is over! Dominic is a real trooper! Enjoy some food and a bit of relaxation. You all deserve it!
Fran
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deannaAugust 10, 2009 at 12:00 PM
I am so glad to hear Dominic is doing so well. What a tough little Guy.
Hope all goes well, my prayers are with you all.
Deanna
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Jessica SalmonAugust 10, 2009 at 3:18 PM
I'm so happy that you are posting Dominic's progress. I'm from Canada and we will be heading to Germany in October in hopes for our daughter who has CP. I have also been following Harrison's Blog and I'm truly grateful for all the details that you have posted. This will help us dearly when we go. I wish Dominic all the best and will be crossing my fingers for your little guy!
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AnonymousAugust 10, 2009 at 10:16 PM
Sweet! You are the Man! Glad that is done and it doesn't surprise me that the "Dominator" handled it well! Way to go!! Chill it Tuesday and before you know it you'll be headed back home! Take care Big Man! Uncle J out....until tomorrow.

All the best!
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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 …..

Monday, August 10, 2009

First Procedure Is Done!!!

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