Somewhat backwards...after 7 years of being with our wonderful neuro-genetics, we had to say goodbye...our Dr. Raymond is moving onto new things for his career. While we are very happy for him, we are very sad for us. However, he did tell us that it has come at a good time for us, if you can look at it that way. Given the diagnosis of SMA with PCH, he needed to move us on to another neurologists who has more knowledge of SMA and dealing with this heart-retching disease. So we have had our last appointment with Dr. Raymond, said our good-bye, although we know we will be in touch with him and keep him updated on what is going on...so that brings us to some new doctors at Kennedy Krieger's Muscle Clinic. We had our first appointment there a few weeks ago and felt very comfortable with all of them. We are hoping for many more comfortable appointments.
Tough decisions...this stems from the appointment with the muscle clinic...there were three recommendations made by them. One, to have a feeding tube placed; two, have c-pap changed over to bi-pap; three, have Ian on bi-pap 24 hours a day. The reasons behind all of the recommendations is to help conserve as much energy as possible for Ian. Brian and I have had many conversations with each other, Ian's other doctors in order to decide what we were going to do with these recommendations. One, over the past few years, Brian and I along with most of Ian's doctors have discussed a feeding tube, not as an if he needed one but as when would be the best time for him to get one...knowing he would need one. We have decided that now is the best time...Ian is healthy and holding his own. Brian and I had a nice meeting with Dr. Katz (Ian's GI MD) and he explained everything. Surgery is scheduled for Friday, November 30th... Two, c-pap being switched over to bi-pap. After another sleep study and conversations with Dr. McGinley and Dr. Escolar, Ian started bi-pap a few days ago. So far, the change has not been a hard one as Ian was already used to the mask and the pressure, so it has just been getting used to two pressures instead of one. Three, bi-pap 24 hours a day. This has been something Brian and I have discussed with Dr. McGinley as well as with each other to really figure out what is best for Ian...we are not moving him onto bi-pap 24 hours a day but will use it during the day if we are home hanging out or if we see Ian needing a some extra help.
Ian has been having a harder time driving his chair lately, we are not sure if it has to do with the joystick or if this is more of the disease progression. There are other types of joysticks which may make it easier for Ian to drive and continue to be independent. We are waiting to find out if his chair is compatible with it...if not...then more decisions.
The benefit....it was wonderful and overwhelming. Most of the evening was a blur to me...people I did not expect to be there were there...words are not enough to show how grateful Brian and I for all those who participated in it and made it happen....THANK YOU FROM THE BOTTOM OF OUR HEARTS....Marci, Brian, Becca and Ian....