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Days 4-6 of pre-transplant workup and weekend

Posted Jul 31 2009 11:54am
There hasn't been a whole lot to write about the past couple of days so here are a few days all together. On Thursday we had to be at Aiden's eye exam at 8:30am. I don't know why they make appts if they are not going to keep to them. I don't mind waiting, but when I check in let me know that they are running a little behind. So Aiden got in at about 9:30am and they lady did a little exam and then we went back in the waiting room. Then a little after 10am ( at this time we were scheduled to do draw the rest of Aiden's labs) we got called back in, they did another little exam and then dialated his eyes. Then back to the waiting room we went. About a half hour later we were called back in and Aiden had to get a couple more drops because his eyes weren't very dialated. Then the eye doctor came in about 10 min later and his eyes are fine. By the time we got to the lab it was 11 am. They were very accomidating and Aiden got right in. Then a little after noon we met with the nurse coordinator to go over more transplant education materials.

On Friday, Aiden had an MRI of his bilateral hips and an echocardiogram, which he did very well with the sedation. Later that night we met a wonderful person who has helped two famalies with Sanfilippo Syndrome through the transplant process, one of which was her godson. It was so nice to meet her and it was nice to talk with someone who know what we are going through.

Saturday was an off day so we were a little lazy, lol. After dinner we met up with another military family from Ft. Lewis whos daughter has Sanfilippo type B and she will be getting transplant as well. It was so nice to finally meet them we have talked on the phone quite a few times especially about how to deal with the insurance. They actully started the pre -transplant workup today so please keep them in your prayers as well.

Sunday was a very relaxing day. We slept in and had a pancake breakfast. Then we drove around a little bit and did some sightseeing. Not really Gil got lost trying to find the At&T store because he decided to take his phone swimming, lol.

Today was a very early morning, Aiden had a pre -op screening at 7:45am. They just went over the surgery for the central line placement and he will possibly have ear tubes put in at the same time. Then we went home for breakfast. At about 10am went over to the adminastrative office for the bone marroow transplant unit and met with two of the family support coordiators, the insurance coordinator and the nurse coordinator. One thing I a going to suggest is that famileis who come for transplant should meet with the family support team at one of the first apptsbecause they give a lot of information on things to do in the area and how to get places. We went over more transplant education materials and actually got to see a central line and they had a life size doll that had one placed. Lucas was asking a lot of questions we didn't realize he paying attention because he was coloring. We also got a book called "My Central Line," I read it to Lucas last night so he could ask questions and he thought bothAiden and Hannah were getting one. After I explained it was only Lucas he was asking why they weren't helping Hannah and finally came to the conclusion that other doctors will help Hannah. He made me want to cry he just couldn't wrap his head around the idea that no one was helping Hannah and I understand because I feel the same, as I am sure other Sanfillippo families do. The only virus that Aiden tested positive for was the form of herpes that causes cold sores, which he usually gets when he is stressed just like his grandma. I am very happy that is the only thing and it is nothing would flare up later and cause a complication for him. We are almost done with the pre -transplant process and so far everything is on track and Aiden will be admitted on June 29 th.
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