Well as usual the last few weeks have been rather busy and there has been little time to update. Thankfully, the last few weeks have been fairly uneventful (unless you count our exciting trip to Pittsburgh or should I say our eventful trip home).
Ally has just been wonderful latley which, we absolutley hate to say because it always seems to be such a jinx. But, she really has been acting and looking better than she has in over a year or so. She is all but running in circles and talking our ears off. She even sings non-stop and has her own little headphones. She hates the cold weather and wants nothing to do with the snow. Ashley on the other hand could care less what the temperature is and would spend the whole day playing in the snow.
Last Thursday we headed to Pittsburgh with Ally for a checkup. My mom and a friend of mine went along for the trip. The drive out was fine and we had no weather or traffic problems. Ally's appointment went well and they were impressed with how well she looked. We discussed double listing Ally for transplant (Shane and I were thinking about taking Ally to Boston Childrens Hospital to be double listed for transplant so that she would be eligible for organs that became available in Pittsburgh's region and in Boston's region). Pittsburgh agreed that Ally could be double listed but, due to Ally's complex medical history, they would prefer it if we went to another more established program. The had reccommended University of Nebraska if we were going to double list. Needless to say we are going to hold off on that for now. Pittsburgh also told us that Ally's name has come up a couple of times for transplant but that they just have not had the ideal donor yet. So for now we will continue our wait.
During our trip we stayed at a Marriott Residence Inn that was about 1.5 miles from the hospital. They have one bedroom type apartments so we are thinking that is where we will be living when Ally gets transplanted. They also have a hospital shuttle that runs all day from 7am to 9:30pm so that would eliminate they hastle and cost of parking at the hospital. We also got to visit with our friend Lynne in Pittsburgh. Lynne had a very special birthday on Valentines Day and we got to be part of her surprise party, complete with a singing telegram delivered by a gorilla that Ally was completely terrified of! It was a fun evening and we were glad we could be there to help celebrate Lynne's birthday.
Now, onto our "uneventful" ride home. You would think after all this time I would learn my lesson but, nooooo I had to go and jinx myself once again. We were just past the 1st Harrisburg exit of the turnpike and I was thinking we were making great time, when I said "you know I really think this is the most uneventful trip I have ever been on with Ally". Thirty minutes later we were at a stand still on the turnpike and we would stay that way for the next 3 hours. Ally, of course woke up from her nap fifteen minutes after we stopped moving. Thankfully, it really wasn't all that bad, we kept each other entertained or I should say I kept everyone entertained (I am not typing the story behind that, you'll have to ask). We ended up having to exit the turnpike in Lancaster due to an accident closer to the Reading exit. Finally, we got off the turnpike and luckily found a gas station close by (we had been sitting on empty). However, after that there was no smooth sailing, we were detoured and driving at a crawl until we reached Reading. Needless to say after 10 long hours I pulled in the driveway.
I did learn one very important lesson from this trip, well maybe more than one. Shane and I had always hoped that when we would get the call for Ally's transplant that we would have time to drive to Pittsburgh instead of flying (we have a chartered medical flight set up but it is a huge expense). However the average window period for an intestinal or multi-visceral transplant is usually six hours, if your lucky maybe eight hours(the window period is from the time you receive a call for transplant until the time you are wheeled into the OR). So at least now I know that we would never be able to take the chance at driving it would just be too big of a risk.
As I said in the beginning it has been a fairly uneventful few weeks! Don't forget Ally's beef and beer this weekend. We are down to a limited number of tickets (probably about thirty or so). If you are definitely planning on going I would recommend getting your tickets this week. Tickets are available at Bause's Super Drugstore or by callling Mary Kay at 610-367-6693. Whatever tickets are left will be available at the door. The beef and beer is from 6-11 at Keystone Fire Co., Boyertown. Music is by Bruce Miller and hopefully Ally and Ashley will be making a guest appearance in the beginning of the event.
Take care and here's hoping for another uneventful week.
Jill
