Saturday, January 31, 2009
So What Comes Next?
Well it's just a lazy day here . My daughter Autumn went to teakwondo with her Dad this morning and now she's playing with her neighbor friends. Isaac's taking a long nap and I'm catching up on the laundry. Sam (my husband) is playing a new video game on his playstation 3. He's my other kid..LOL.
So what comes next for little Isaac? This Tuesday Isaac has a Neurology appointment and then on Friday, Feb. 6th he has a follow up appointment with the ENT. The follow up appointment is for the procedure he had done a couple of weeks ago to replace his right ear tube. I'm sure the doc will also want to talk to me about his hearing test too, which I'm kind-of not looking forward to. In March we will we will be seeing the Pulmonologist, Endocrinologist and the Opthalmologist. April is still looking uneventful other than a trip over to Shriners Hospital.
The Pulmonologist wants to start weaning Isaac off of his diuretic meds in the spring. He started taking this because he had severe edema last April that caused him to gain as much as 8 ounces a day of fluid! Since Isaac has a rare chromosome disorder and is a mystery, the doctors really couldn't figure out what was wrong with him, so they diagnosed him with Lymphedema. Well thank goodness the diuretic worked for him and he lost all of the fluid, poor little guy, looked like a water balloon for awhile. Lynn, my home nurse also gives him a head to toe massage everyday to keep the fluid circulating out of his body(yes, he is very spoiled.) Anyway, weaning him off these meds is going to be a process, but he will hopefully do just fine.
Isaac continues to do very well on his oxygen levels and is staying infection and pneumonia free, which is amazing for this time of year! I have been exploring the option of possibly transitioning him towards the spring and summer months from home therapy to attending the center at the Guild School. This would be great for Isaac, but especially good for me as it will be a good outlet for us. Isaac is limited to only 6 therapy sessions per month while recieving home therapy. This includes PT and ST. If we were able to attend the center he would have more options. This of course is only something I am considering and the doctors will have to say that Isaac is well enough or not too medically fragile to phase into this, So we will see what happens.
Have a Great Week! Love, Colleen