Ally Heintz

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

Just a quick notice to let you know that Ally has an article in the Boyertown Times this week. Thanks to Diane for taking the time to let us share our updates on Ally with the rest of our community!

Please support the times and pick up your copy this week!

Happy 3rd Birhtday Ally!!!

The celebrating just keeps on going. We started Ally's birthday week on Sunday when she had a Superbowl birthday party. She even took cupcakes to Sunday School, not that she ate any but the other kids enjoyed them. She was so proud of herself all day she kept telling everyone that she was a BIG GIRL!!!

By far the most exciting moment was when she blew out her birhtday candles. It sounds like such a small thing but the past two years because of the trache this was not possible. I was nearly brought to tears seeing her mark this milestone in her life by completing such a simple age appropriate task. I had a flash of memories from the past three years of all that she has accomplished (big and small) in her short life.

Fast forward to today, Ally's real birthday and I would have to classify Ally as a naughty girl (typical 3yr old) not a big girl. Unfortunately last night we did not have a night nurse so as usual I was short on sleep. Ally wanted no parts of sleeping upstairs in her sister's room. After screaming on and off for twenty minutes I moved her down stairs and I camped out on the couch for the night. Thankfully the girls must of sensed I was worn out so after their bath and Ally's numeorus dressing changes the girls played nice. I was beginning to think that for a bad night the day was turning out pretty well.

Well all that changed when nap time rolled around. Ally once again wanted no parts of napping. and after 15 minutes of crying I assumed she had fallen asleep. Obviously not because a 1/2 hour after the crying had stopped she was screaming her head off and I found her in a puddle of blood. Instead of napping she had decided to pick apart her bag around her g-tube. She had also ripped her skin off and her stomach mucosa was bleeding pretty good. She also had blood in her hair, on the wall, streaked down the crib and on the floor. Needless to say it was a bad afternoon, ending with both Ally and I in tears. Ally needed to be bathed again, her bag and central line dressing done for the second time today and I had to scrub down the crib, the wall and the carpet. Not to mention I just started my third load of Ally wash for the day!!! Sorry to vent but sometimes Ally makes me feel like I am the best and worst mother all at the same time and today has been one of those days.

So now instead of a nice birthday celebration tonight, Ally will be going to bed early and I will be having a large glass of wine (I hope!) Ally's favorite songs are "Hard Knock Life" and "Tomorrrow" both from the movie Annie, I think the first one pretty much sums up the day and the second gives me hope that tomorrow will be a better day.

Jill

P.S. Tickets for the beef and beer are starting to go fast, so don't wait till the last minute if you want some. The beef and beer is Saturday February 24th from 6 to 11 pm at Keystone Fire Co., Boyertown. For tickets contact Mary Kay at 610-367-6693 or tickets may be purchased at Body Borneman Insurance of Bause's Super Drug Store.

I'll try to get Shane to put up some pictures later this week. We even have video of Ally eating birthday cake!