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Hope for CP.org
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Written by Kristin Ricci
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Wednesday, 08 July 2009 18:42 |
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We have settled into a routine here in St. Petersburg regarding the vasodilation treatment. We started with the Nitrate paste Tuesday morning. Dr. Hammesfahr first applied it to his arm and it is absorbed into the bloodstream/body within minutes. We then returned in the early afternoon and the doctor applied another little dab to his leg. Today was the same schedule with two applications. Dr. Hammesfahr immediately thought his head control improved and that Drew's hands were more relaxed. I am a little bit more skeptical considering I'm Drew's farty old mother. It's hard to tell sometimes if Drew is having a good day or if we really are seeing improvement. However, I definitely love hearing positive news!
Today, however, was an exciting day regarding our rented minivan. We noticed when we first turned it on when we arrived on Sunday morning that there was a little exclamation point symbol on the dashboard lit up. Well today my mother decided to look up what it meant in the owner's manuel and it was a little scary. It stated brake system failure, stop driving, call dealership immediately. So we had Mike call Hertz and they agreed to send us a new minivan right at our hotel and drive the old one back to the airport. Well, Mom explained to me that the driver drove out here in a tow truck with the new minivan. He explained for liability purposes, he was not allowed to drive the old minivan back to the airport. He then proceeded to check out the old minivan and he said the tire light was also lit up on the dashboard, a possible nail in the tire? To make a long story short, I am beyond pleased Mike handles our vehicles. I usually just stand on the sidelines scratching my head, while Mike does all the work. |
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Written by Kristin Ricci
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Monday, 06 July 2009 12:40 |
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Our little Drew is one well-traveled little rat! We woke up at 5 am on July 5th to wake Drew up, get dressed, pack the car, pick up grandma, and then get our big behinds to the airport. It doesn't seem like a lot, but with kids it always seems to take forever. I do have some comic relief here folks. I packed one bag for Drew and me. I was nervous it would be overweight or over the 50 lb limit. The check-in lady at the counter threw it up on the scale, and we all held our breath. It was 49.5 lbs! Praise the Lord!! I could have just river danced my way to the security checkpoint. Then the evil, evil witch reaches in her back pocket, and whips out her measuring tape!!! She measured the circumference, length, and height. She then snarled, "It's oversized! You'll have to pay!!" The hag then types in her computer for 4 or 5 minutes, while the line grows and grows behind us. I think we weren't the only ones holding our breath! Finally, the shrew charges me 40 extra bucks on top of having to check 2 bags which was another 30....so why is Air Tran so cheap??? We've flown with that bag to China twice and no one ever bats an eye.
Anyways, the flight went fine. Drew slept half of it and didn't complain at all. He loves taking off and landing, which I'm sure everyone reading this loves too! However, I do have to mention the flight attendants were a little rough. Mom counted 7 times that they asked us to place Drew in his seat and buckle him in. There were a few times during the flight where the fasten seat belt sign would come on, and immediately all three would miraculously appear and demand his butt in the seat. Having Drew sit without arching/wiggling is very tricky. It kind of reminds me of forcing a cat in a bag. By the end of the flight, we had the people across from us rolling their eyes when the flight attendants would start drilling us. Drew got a laugh out of it, so it's all good in the long run.
We arrived in Tampa, collected our bags, and then went to obtain our rental minivan. Everything went fine until Kristin tried to install the carseat. Needless to say, it wasn't pretty. Grandma flagged down two Hertz employees and we finally got it in. I guess the back straps had gotten loose on the flight and weren't in the right holes.
Our next step was to drive from Tampa to St.Petersburg then to Treasure Island. Mom printed out directions and Hertz also had a GPS in the van. Wouldn't you know we still got lost!! Well we eventually arrived but had time to kill because check-in wasn't until 4 pm. We had lunch at IHOPs and shopped for groceries at Publix. We were delighted to discover at Publix they have their own baggers and they also will load up your groceries in your car for you! It was awesome! What's also interesting is that Publix and a lot of the newer buildings are up on stilts. Treasure Island is really a large sandbar, so I guess they must have had some serious flooding issues in the past. Anyways, it was neat that we got to park our car under the grocery store in the shade instead of out in the hot sun.
We checked in yesterday at 4 pm and we are very pleased with our accommodations. We are staying at the Sunset Vistas on Treasure Island. Check out their website. It's only 3 years old and has a cafe serving all three meals, pool, jacuzzi, parking, and it's right on the gulf. Our suite has two bedrooms, two bathrooms, two tvs, kitchen, washer/dryer, and a living area with a dining room table. We have a large balcony overlooking the gulf too. A++.
As for the rest of our first day, we went swimming from 7:30-9 pm. We had to wait until the sun was setting with our Yankee/Vampire skin. Then we put Drew in the new pottery barn carrier we bought (it's great Erin!) and we walked in the surf during the sunset. No it was not romantic! I was with my mother! Drew got a kick out of a big wave that soaked my mother and her white capris. Finally, we all went back up to our room and snored our brains out.
Check out my previous blog; I just wrote it. |
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Written by Mike Ricci
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Wednesday, 10 June 2009 22:17 |
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Today is our 4th anniversary and wow has life changed since 2005! Our marriage has definitely started on a different course than most but that's okay. We had Drew early on in our marriage and it was a roller coaster both in the NICU and out. I probably don't need to go into detail, needless to say life was pretty tough back then. Life was also challenging when Drew was discharged from the NICU. As newlyweds we had to juggle the frequent NG feedings, oxygen, heart monitors, medications, doctors appointments, and therapy appointments. We had to do this all on our own because we had just moved to Chicago to jump start our careers.
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Written by Kristin Ricci
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Monday, 06 July 2009 11:57 |
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Currently Drew, my mother, and I are in St. Petersburg, Florida, obtaining vasodilation therapy for the king. Initially, I discovered Dr. Hammesfahr's website a couple years ago by "googling" treatment for cerebral palsy. I added this therapy to a mental list of possible things to try in the future for Drew. While we were in China, we met a few people who had success with vasodilation with Dr. Hammesfahr and another couple who had booked their first appointment for when they returned home. I also learned a fair amount from the yahoo group I belong to titled "BIA4Kids." The moderator highly suggests umbilical stem cell treatment, followed by vasodilation as soon as possible upon returning home. Other members of this group have done this procedure and have noticed significant results with their loved ones. Mike and I did a little more research concerning possible health risks and his certifications/credentials...everything looked promising. So here we are!
In theory, vasodilation will open up blood vessels in the brain allowing the stem cells to reach various parts of the brain easier and more effectively. The increased blood flow and the stem cells will then help heal/repair the neural tissue. Dr. Hammesfahr mentioned on our phone conference that the most effective way of utilizing these therapies is to start the vasodilation before the stem cell infusions but if that's not possible then as soon as possible afterwards. Our last treatment was about 2 months ago which hopefully isn't too long ago. The doctors in China told us several times that the stem cells are actively repairing neural tissue for up to 1 year later.
Our first appointment was this morning; it was about 30 minutes of interviewing and asking questions. Our major duties today were to obtain Motrin, magnesium, and a prescription for topical Nitrate paste. Drew needs to start taking the Motrin and Magnesium today because sometimes the nitrate can initially constrict blood vessels and anti-inflammatories can help prevent this.
Tomorrow we will start with a microscopic amount of nitrate on Drew's legs. Dr. Hammesfahr is starting with the cream on Drew's legs because it is the farthest place on his body away from his brain. He wants to assess how Drew tolerates this, and he will progress to different parts of his body like the abdomen, posterior neck, etc. The topical nitrate only dilates the outer portion of Drew's brain. This is the first step to Dr. Hammesfahr's treatment. We may progress to other medications that dilate deeper vessels in the brain sometime during the next two weeks depending on how well Drew is doing. He also suggested we obtain a SPECT scan 6 months after Drew's latest stem cell infusion to see how the blood flow is in various parts of his brain. That would be in November. This makes it easier to judge which areas need therapy.
Dr. Hammesfahr mentioned that he treats brain damage like a cardiologist would treat a patient after a heart attack. He also mentioned this is not a quick fix; that it will take years. During our phone conference a couple weeks ago, he mentioned that the state of Florida mandates out-of-state patients to return every 3 months to continue with medical treatment. I guess we will see what happens. His first aim for Drew is to improve his head and trunk control. Tomorrow he will videotape Drew to catch some of his athetoid-like movements on record.
Please ask me all questions through my comment section so I can ask Dr. Hammesfahr! Our last appointment is July 16th in the morning, so ask sooner than later!! |
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Written by Kristin Ricci
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Sunday, 17 May 2009 10:27 |
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We've been home for about one week and have been drilling everyone with what they thought of Drew's progress. Both of Drew's grandmothers felt that his hands were more relaxed than usual. I remember thinking the same thing after our first trip but then within a couple months his hands tightened back up again. Also, both grandmothers noticed that Drew is talking considerably more. He can now combine a few syllabels to form a few words like "bug" and "bus." It's funny that he started doing this because he started saying these words before his first stem cell treatment in the beginning of April. Dianne, Drew's speech pathologist, taught him this on the plane ride over. In case you missed some of the earlier blog posts, she flew with us to China and spent a couple of weeks with us helping out with Drew.
The biggest news I have however pertaining to Drew's speech is that he has been able to say "ma ma" on request. He's been able to "ma ma" once in a great while over the past couple of years but we think it was due to accident. However, for the past few consecutive days he has been able to say "ma ma" when we ask him to. Go Drew!
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