*Trey had a ‘happy visit’ to the dentist back in January. This visit was to get Trey familiar with the dentist office, having someone look and feel around in his mouth and also for the dentist and I to be on the same page as far as Trey’s dental health was concerned. I was so pleased with Trey’s dentist, he had done some research on MPS conditions and expressed to me that he was not only willing but also excited to learn along side us every step of the way. This very generous man also suggested that we might want to come for visits every three months as apposed to every six and that he would only bill every six months as far as insurance would go. Well, that said, we went back in April for Trey’s first cleaning and x-rays and the good dentist said Trey’s teeth and gums looked great, that Trey did wonderful and if we felt comfortable, we could come every six months until we have something to worry about, but that as of now, we should treat Trey like every other patient.
*Again, we were denied insurance help for growth hormone. I am in close contact with Trey’s endocrinologist who as we speak is appealing this for the second time. It has now been about 18 moths since Trey has gained a pound or an inch. My heart aches at the thought of him living his life at this height but have to put this pain in God’s hands and hope and pray that something good will come of all this in the way of research and medicine.
*It has been decided by Mike and I based on the following advice of Trey’ s doctor’s that we keep his port in place.
The advantages of taking out the Port-a-Cath are:
1.) Reduce risk of infection or damage to the catheter (which is relatively low, especially since Trey has not really had problems with it thus far).
Disadvantages:
1.) Trey could "lose" (permanently) one of the few locations in the body where one can put in such a cather.
2.) He would likely want to have an additional surgery in the future to put in a new catheter for the clinical trial, and this would require another surgical procedure.
Advise;
If it is bothering him or you, then it would certainly be reasonable to take it out now.
If it is not a significant problem, and monthly infusion of heparin is not a huge inconvenience, it would be reasonable to leave it in place.
Thus said, I will be ‘flushing’ Trey’s site monthly and pray that all goes well.
*The results from Trey’s EKG came back and all was well. This same test was preformed back in November in Minnesota but for it to ‘count’ as part of the Oakland study, it had to be administered within the past 90 days. Mike and I were so happy to see that both locations felt there was nothing to be worried about in the way of Trey’s heart at this time.
*Swim classes have begun and Trey’s is in his glory. He loves to go underwater and he kicks like crazy when it’s his turn on the turtle kickboard. Trey has express how much he like’s this swimming class so I have added him to a waiting list to go twice a week in hopes that not only will he learn how to swim but to also add to his weekly physical therapy.
*Trey’s third preschool session ended this past Friday yet so un-true to form, Trey wanted nothing to do with his graduation ceremony (not even the grass skirt or lei) and sat in my lap the entire performance. The next class geared towards preschool started yesterday and so far Trey is off to a good start. He had homework his first day and was so proud to bring it back to school in his backpack, just like his big brothers do. Testing for the two types of preschool the city offers will take place at the end of the month…we will let you know the results of that array of tests soon after.
*Yesterday was also our follow up appointment to Trey’s first hearing appointment. Again, fluid was found behind both of Trey’s ears. Mike and I decided that the next logical step is to have the tubes inserted into both ears in hopes of draining his little ears and giving him a chance to hear better as well as the anticipation that Trey’s speech will see instant improvement.
We are extremely grateful for all the love and prayers that come our way and again, can’t thank you enough for it all. If you feel like making a comment to Trey’s updates, please remember to click “comment” at the bottom of each update on his blog instead of replying back to our home e-mail. We are hoping to keep all comments on his blog site so that when we print it, it will be all inclusive.
With all sincerity,
Mike, Cami, Drake, Broc and Trey
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