Monday, June 29, 2009
Make a Wish Update and Other Stuff
Last week, volunteers from the Make a Wish Foundation came to our home to talk about our wish. Thankfully, I printed off all of the lovely suggestions everyone gave me when I asked for suggestions for our wish. That was really helpful. The volunteers were so gracious and even brought Dear Son a gift! Dear Son had been having some medical issues in the days preceding their visit so I wasn't certain that he would be awake for their visit since they came at 7 p.m. I managed to get him up and into the rocking chair and he laid his head on a pillow on the table while we talked about the trip. After a while, Dad transitioned him to the new swivel recliner and he fell alseep. We talked to them about Dear Son's favorite things-Barney, listening to country music, his love of animals and swimming and tried to build around that. I also talked to them about his medical needs for the trip. We need a hoyer lift and IV pole for the room as well as some other things. As for other wishes, we asked them for suggestions however they didn't really give us any ideas. The only request I gave them was that I need things to be easy since it can be hard getting around with Dear Son.
They asked us a ton of questions and basically filled out a bunch of forms. We had to show proof of our driver's license, auto insurance and give them a copy of Dear Son's birth certificate. They asked us all kinds of questions-did we have our own luggage, what kind of camera we had and then specifically, how much storage on the camera. It was an interesting experience. They also gave us a choice on publicity, you either agree to it and refuse it. We agreed to it since I feel if someone is nice enough to grant you a wish, you should be gracious enough to allow them to photograph that.
The next step is the trip needs to be approved. Once that is done, they'll check with his physician to see if Dear Son can manage the trip. This should take around thirty days or so. If the trip is denied, then you or they come up with a different wish. We are open to suggestions and are simply appreciative that they would even grant Dear Son a wish!
Trips take three to six months to plan, according to the foundation. We are hoping to take the trip in early November, when Dear Son turns eighteen. I think that would be a lot of fun to do this trip on his birthday and then we'll always have these memories. My dream is that I see Dear Son's smiling face the entire time. If we can do things that make him happy, I will be excited. We have to take the trip during cooler months since Dear Son can't sweat, with the patch he wears (He wears a scopolamine patch to dry up secretions in his throat since he can't manage them. As a result of the patch, it does not allow him to sweat so he can overheat easily, hence the trip must be made when the temperature is cooler.)
We are really looking forward to this. After his last hospitalization, I knew that we needed to do something fun. I don't think Dear Son will survive another pneumonia. I can see Dear Son is getting weaker and is losing his ability to sit up. I hope he can endure the plane ride since he won't have a supportive seat, like we do for his wheelchair. I also don't know if he can physically sit up that long, without leaning on anything. And then there is the issue of trying to get him into an airplane seat. Currently, I use a hoyer lift to get him into his wheelchair. If Dad lifts him into the seat, then he is going to need some room in order to lift him.
We also have to figure out what we will do in terms of changing him. We need to lie Dear Son down to change him so we'll have to figure out how to do all of this at the airport since we can't do it on the plane. I really don't want to do a Texas catheter for the trip. Once we get approved, we'll have to check into the weight restrictions on the luggage and may need to have his formula shipped ahead of time. The Make a Wish Foundation has a travel coordinator that will get in touch with us once the trip is approved. They do this every day so hopefully they can make things easier for us.
Other than the trip, it's been a busy week. Prior to Father's Day, Dear Son began having more seizures and then some other medical issues. His feet started swelling, his legs turned blue and cold and the bottom of his foot was burning up. In addition to the seizures, he began sleeping excessively, around 20 plus hours a day and I could not arouse him. The day after Father's Day, he woke up at 5:30 in the morning with a seizure that last twenty five minutes. I tried using his vagus nerve stimulator but it didn't stop the seizure. I then administered his morning meds and the seizure kept getting worse. Finally, I had to administer Diastat, a rectal valium, and the seizure finally subsided. It took a few days for him to get back to normal but I think he's starting to feel better. I am finally getting some rest as well.
After that, summer school started and it's been a lot of work getting everything together. While I keep a template on my pc of last year's instructions for school, it still takes a while for everyone to get on board. Probably the biggest issue I had last week was the school bus. Due to Dear Son's inability to sweat and his weak lungs, he requires an air conditioned bus. It's in the Individual Education Plan (IEP) however for some reason, the school failed to notify the bus company that he required an air conditioned bus. I had to make several calls and after four days, they were able to get the bus issue resolved. The school apologized saying it was their error and the bus company had apologized as well, saying they didn't receive any notice. I understand those things happen however I was worried that he might have an emergency in the interim.
Dear Son is enjoying himself however. Every Tuesday and Thursday, the special education recreation organization offers extended days with extra activities. On Tuesdays, they stay in house but do various projects with art or music. Our cat Wiggles likes the art projects best, because he likes to play with them. When he does, it makes Dear Son laugh so it's extra enjoyable. On Thursdays, they go on field trips. These extended days allow me to work without hiring a sitter. His favorite days are Wednesdays and Fridays because he's down at the pool. His high school teacher saw him last week and said he was just glowing; he was so happy to be at the pool!
Finally, I am having some issues with blogger. Recently, I upgraded to IE8 and some people are experiencing the same issue that I am, being unable to copy and paste from Word into blogger. I typically write my stories in Word and then cut and paste them into blogger so this is a major issue! I don' t know of a work around. Posts like this I can write in blogger however my stories I like to write in Word.
I will try to post more often, now that summer school is underway. Oh, the bills for the May hospitalization have arrived. The billed charges, before discounts, were $254k; 92k was for the vagus nerve stimulator surgery to replace the battery (actually they put in a newer model) and $162k was for the ICU and the rest of the stay. Year to date billed charges are in excess of $330,000. Hospital bills arrive daily however thankfully, we have now met our stop loss.
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