Just a few short weeks and things will hopefully be changing for the good around here. At the end of the month Jack will have his 3 month post halo removal X-ray and the plan is to start taking off his collar. He has been with either a collar or halo since June 2010 so this will be nice for us but I’m sure very unusual for him. Then a few weeks after that Hunter will have his 6 month post op CT scan and hopefully removing the halo and having him go into a collar. Hunter did have a mishap as some of you know and I want to let you all know that this was not a serious emergency. Or even an emergency at that. He feel about 3 weeks ago and he was fine, no bumps or bruises, no lose pins or bleeding. I am assuming that this is what started the migration. Slowly the halo started to migrate up on his right side. He was telling us he had boo boos and his pins hurt. A couple were lose so I finger tightened them to see if that helped. He was still uncomfortable so we took him to see his doctor that Monday morning. At this time when were up at the hospital is when we noticed that his halo had slightly migrated. This is very common with falls or good bumps to the halo. Normally they would have fixed the halo right in the office but because Hunter doesn’t like anyone touching the pins (even for a cleaning) we had to give him anesthesia to put him asleep. He has had anesthesia frequently and does very well with it and we have very knowledgeable anesthesiologist that have worked on others with MPS and one other with Morquio Syndrome, besides our boys. Our neurosurgeon then fixed the halo right in the treatment room where they put him asleep. After a couple days he was back to normal. They did move some pin sites because they were looking kinda yucky (which is what happens after almost 6 months of wearing the halo) so those new sites were extra sore. There was no movement in the neck. He was still very solid and still because of the halo even though it migrated. If he was not sore then they would have left him with the migration and just kept and eye on him. We actually tried to talk the doctor in to taking him out and putting on a collar but 6 weeks early was too much for her and it’s best we keep in it for the max time if possible. So there is no need to worry about Hunter I would grade this visit as a little bit more then a scheduled check up. We did not feel as there was a need to alert everyone because to us it was just like a basic visit to the doctors where he just needed a little tweak. Sorry if not by telling everyone that we may have caused panic. We just did not see this as an emergency and only as an extra visit to the doctors.
On a lighter note the boys are doing well in school along with Taylor. We have noticed that since they have been in school (last March) their speech has become much better. They enjoy school very much and will point out their friends who they play with and show us the things they make in school. We are very blessed that they are very happy kids and nothing slows them down.
As some of you know We have started up a 501c3 non profit to help research Morquio Syndrome. We are holding our first fundraiser which consists of 14 days in November of raffles including gift cards and gift baskets. The cost to enter the raffle is $10 for one entry or $25 for three. Every entry will have a chance of winning every day even if you had already won! So you can win multiple prizes. I know some of our supporters do not live around here and some prizes are for gift cards to local stores but if you want to participate and know someone up here in the area theses gift cards would also make great gifts. I will have all the information under the Fundraisers for the Non Profit and if you have any questions you can leave a comment or email me at email@example.com. While we appreciate all the donations to the boys themselves and all the help we get, we need a treatment or a cure that will help slow the progression of the syndrome down. Bio Marion Pharmaceuticals is working on one now but the treatment requires you to go the hospital once a week (all day treatment) for the rest of their lives. Wouldn’t it be nice to be able to to once a week just administer a shot ourselves or only go to the hospital once a month. This is why we are still raising money! I hope you are able to help our cause and because we are a 501c3 all donations are tax deducible.
Thank you for all your continued love and support