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Thursday Update: 04/20/06

Well, we made it back safe and sound from our trip to Iowa City. It was another long day on the road, and we spent a lot of time waiting for doctors! We saw three doctors and their three respective resident doctors as well…phew. There was a Radiation Oncologist who specializes in radiation treatments, similar to the Cyberknife we have here in Des Moines. There was also a Neurosurgeon, who would coordinate the radiation treatment IF that’s the route that is chosen. Then there was a Neurosurgeon/Radiologist who specializes in embolization (inserting glue into the abnormal blood vessels). Well, all three doctors agreed that they want Matt to undergo another cerebral angiogram with super-selective WADA testing.

Apparently, they have the ability there to get a more detailed picture than those of Matt’s previous angiograms. The WADA testing will also help them make the decision on which treatment option would be less invasive, provide the lowest level of risk, and give us the best possibility for cure. This test is done to determine which hemisphere (side of the brain) is dominant, or most responsible, for critical functions such as speech and memory. The WADA testing involves putting part of the brain to sleep temporarily (5-15 mins). While the brain is affected, parts of Matt’s speech, memory, and body will be affected too. While the one side is asleep, they will test his memory, speech, and ability to understand speech. Once they have the results of the angiogram and the WADA test, they will make their recommendation.

Another thing they are considering is whether or not Matt’s abnormality is an AVM or an AVF. An AVF is an Arteriorvenous Fistula. It is a short circuit between an artery and a vein. Normally, your blood flows from arteries through capillaries and back to your heart in veins. When an AV fistula is present, blood flows directly from an artery into a vein, bypassing the capillaries. If the volume of diverted blood flow is large, tissues downstream receive less blood supply. (Anyone confused yet, or feel like we’re in an anatomy/biology class!?!)

Treatment options for an AVF are different than for an AVM, depending on which layer of the brain the abnormality is in. (They will also be able to determine which layer Matt’s is with this next angiogram.) So…we still don’t know which treatment we are going to end up doing as of right now. However, all of these doctors felt very confident that once they have the results of their angiogram and WADA testing they will know exactly what it is, where it is, and how best to treat it. Even though it’s been a pain to go back and forth, I’m glad we’re getting seasoned experts reviewing Matt’s case. As much as we want to put this behind us, we are glad to be getting such detailed and knowledgeable opinions. We are going back to IA City for the angiogram next Wednesday….at 7:30 AM! Fun, fun!

Matt is SO excited about having another one. For anyone who doesn’t know what all the angiogram entails…here’s a brief run down: a small catheter is inserted up through an artery in his groin, they inject contrast up through the catheter into the blood vessels, they then take pictures of the highlighted blood vessels, next he has to lay flat for 2 hours, then he can sit up slightly and ‘relax’ for 4 more hours, then we can finally head home. PLUS he can’t eat anything the morning of the procedure, so I can’t even make him feel better with a few Krispy Kremes! This is the FOURTH time he’s had to go through this. It darn well better be his last.

In other news, we have changed up Matt’s therapy schedule a little starting this week. He is now going to go over to Younker Rehab’s outpatient therapy to work once a week on speech and PT (in addition to the work he continues to do at Penn Medical). He will work with the Voice Therapist there on the pitch and intonation of his voice. She has special computer programs to record his voice and its pitch range and will help him work towards getting his voice sounding less forced and more normal. He will then spend an hour with a Physical Therapist there working in the walking tank! It is a long narrow tank with parallel bars inside for him to hold on. The therapists walk beside him on the outside of the tank and can see his foot placement etc. We went yesterday and it was pretty cool! He walked back and forth several times. She would have him use both hands, then only one hand. She had him walk sideways and backwards, as well as just standing and not holding on, to work on balance. I think both of these new therapies are going to be great for Matt and I’m excited for him to be trying new things! You know Matt, he doesn’t get too excited for much of anything…but I think he enjoyed the change of pace and the freedom the water gave him. After he stood in the water by himself for a good long time without losing his balance, the therapist asked him how it felt. His reply? ‘Normal.’ How awesome is that!?!? A taste of normal…it’s SO good for him!!!

We’ve had a busy couple of weeks. My Mom visited in early April and we celebrated my sister’s b-day. We also enjoyed our Easter at my Grandma’s house and spent the day with my Aunt, Uncle, cousins and my sister’s family. It is always so good to be around family!!! Of course, there is always lots of snuggle time with Little Matt…and his big sister Meghan. They are truly the apples of our eyes! We ventured up to Boone and out to dinner with Matt’s parents…something we used to do nearly every week when we lived there! We had some friends over and watched a movie and ate popcorn…also good! Our schedules have been pretty hectic lately, but the warm spring air that is breathing new life into everything around us, gives us a sense of renewal as well. We are looking ahead to good times, good thunderstorms, and good fun with friends and family. I trust you will continue to keep us in your thoughts over the coming weeks as we (hopefully) nail down the plan of action for Matt’s treatment.


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