Ally Heintz

Well it wasn't the best check up for Ally but than again things could always be worse. On the good side Ally was able to gain some weight this past week, despite all the vomitting. I think the extra fat in her IV fluids is helping. On the bad side her liver functions took a pretty significant jump up. Because of the jump Ally had an ultrasound performed yesterday. As far as they could see things looked unchanged since her last ultrasound, which is good. Tomorrow we draw labs at home and get the results on Thursday. If her liver function levels are still elevated or increased than we will be stopping Ally's blood thinner and she will be having a liver biopsy done later this week or the beginning of next week.

We know that everyone is pulling for Ally but please pray that Ally's liver function levels come down to normal. Take care and we will update Thursday night when we have some results.

Jill

Hi everyone, I figured I better take over here since Mom and Dad are slacking off with the updates again. Last Monday I had checkups at duPont with GI and pulmonary. Mommy also drew my blood for labs before we went so we dropped them off too.

My GI checkup went okay the docs are a little frustrated because I haven't been gainig any weight. Actually I weigh the same now as I did when I checked into duPont last August. That's hard to believe when you look at me but it's true. Anyhow they added some extra fat to IV fluids so we will see how my weight is this week.

The pulmonary visit went well. Dr. Chidekel seemed pretty impressed with how well I am doing off the vent. I'm basically only on the CPAP at night and when I get my breathing treatments. We also turned down my pressure support setting for CPAP. This week I'm getting a special speaking valve for my trache. It will take some getting used to but it will make it a lot easier for me to make sounds and to try to talk. Dr. Chidekel said he would like to have me decanulated in September but it is really going to depend on how well I do with my surgery for the G-tube. If it takes me a long time to recover it could set my respiratory progress back a little. If I don't get decanulated by September I have to wait until April. We'll see!

Unfortunately my liver function levels went up a little last week. We drew labs again on Thursday and one liver enzyme level stayed the same, one came down and one went up. I like my liver to be a mystery for everyone. I have labs drawn again tomorrow. My mommy is a little worried because I have been vomitting a lot this past week and I ran a low grade temp Thursday and Friday. The last time I did things like this I ended up having a rejection episode. I guess will know more tomorrow once they have my lab work back.

Other than the vomitting and fever I had an okay week. The highlight was watching my Pop and Rowdy Randy compete in the Fear Factor competion at Boyertown's Sidewalk Expo. They didn't win but it was very entertaining and I was very pround of both of them.

Everyone try to stay cool this week. I'm hoping for a little rain so the grass softens up. Don't forget to check out my new video. It was my first bath with my sister!

Today turned out to be one of those days.

We had planned to spend breakfast at Jills Moms house with the rest of the family, but right after we arrived, as we were getting Ally out of her car seat, some how her central line (this line goes into her heart which feeds her IV/TPN fluid) got caught on the seat and tore completly through. This meant instead of having breakfast, we would be making a trip to delaware to the emergency room to see if the line was able to be repaired.

We thought for sure Ally would need a new one since she already had this repaired a few months ago for a small tear. So we packed our bags and made a trip to duPont.

We spent most of the afternoon in the ER. Lucky for us, room #7 was just that. LUCKY! The docs repaired the line and sent us home.

Ally in general is doing OK. Thursday and Friday she was not quite herself. It seems she had some bacterial overgrowth happening in her bowel. The docs gave us some meds, and hopefully this will clear things up. She also has needed some extra breathing treatments and suctioning of her trache, because of all the stuff making her feel so ill.

Tomorrow Ally will take yet another trip back to duPont for her weekly labs. Pray that they continue to be OK.

Thanks Nurse Karen for my father's day message!! I can still remember last years fathers day and how you stayed late to wish me a happy fathers day, and the wonderful surprise! You sure did make some memorable moments for us!! Thanks.

HAPPY FATHERS DAY to all!

Shane

Ally spent most of today at duPont, getting her labs drawn. The good news is that her liver function levels have come down. So much so, that Ally does not need blood drawn Thursday for more labs. Her next trip will be next Monday. If all goes well the rest of this week, we will also be able to increase Ally's feed 2cc per hour. GI first needs to approve the change.

Some other news regarding Ally's health; she continues to be doing very well off the vent. Yesterday she was only on the vent for about 2hrs. As of right now, she basically is only on the vent when she is sleeping.

On July 7th, we are planning to admit Ally into the hospital to have a G-tube placed into her stomach. This will allow her to continue to want to try eating orally, and also help with speech.
Most importantly, we hope she feeds even better then she currently is progressing. I dislike the idea of actually having to go back, but this is what will get us one step further along. With as many hours as we have logged staying in the hospital, whats another week or two?

Enjoy all the new photos, and we will continue to keep you updated on Ally's progress. Please continue to keep Ally in your prayers, and if you could Ally said to say a special prayer for her buddy John Maicher (his link is off of Ally's site).

Shane

What a great week! Ally and the rest of our family had such a fun time this week. The weather was great, a little hot but still a nice week.

Ally had some labs drawn on Wednesday and then we got her results on Thursday. Two of her liver function levels came down and one has gone up. The docs aren't sure what that means because typically the all go in the same direction. So, tomorrow we are off to duPont for a visit, and more lab work. Ally looks fantastic though, so we are hoping for good results tomorrow.

On Friday we took the girls to fun days in Boyertown. Ashley had a good time with her cousin Katie on the rides. Ally didn't go on any rides but she had fun just being out and people watching. On Saturday we took the girls to the family fun day at Galeotti Family Chiropractic Center in Oaks. This event was a free admission event, but any donations made will go to Ally's recovery fund. It was a little too hot for Ally, but she had fun hanging out inside the office. Ashley had fun outside in the moon bounce. If anyone is looking for a chiropractor or some massage therapy, Chris and Wanda Galeotti are some of the nicest and most generous people I have ever met.

Later Saturday, it was home for naps in the afternoon and then Ashleys' babysitters and Ally's nurse arrived. Shane and I were off to have a night of fun at the beef and beer. We had a great time and as always we were amazed at the amount of people that came out to support Ally. It was so nice to see so many friends and family that we don't get to see that often any more.

Sunday we spent the morning outside playing and then in the afternoon we headed to Grandmom and Pop's for a picinic and some swimming. This was Ally's first trip to the pool. Needless to say she wasn't to wild about the water but she did okay for her first time.

We just wanted to thank everyone that organized and helped with the Beef and Beer event, I would have to say it was a huge success. Also a special thanks to Chris and Wanda Galeotti for the family fun day. The winning ticket for the Florida trip was drawn Saturday at the beef and beer and the winners were Bill and Miriam Spaide, congratulations! Thank you to everyone who bought tickets, this was a great fundraiser. Also a huge thank you to Aud and Larry Eddinger for making this trip possible by donating the one week stay. Finally thank you to Judy Hunter of Hunter HR solutions and Bill Hunter of Affirmative Funding for donating $400 used towards airfare for this trip.

Shane will try to update tomorrow night so we can let you all know about Ally's lab work. Also we have new pictures!

Thanks to everyone for all the support and prayers. For those of you that don't know we have a link off of our website for John Maicher. He is a friend of ours who was also waiting for a liver transplant. John and his family have been having some very difficult times lately so please keep them in you prayers.

Take care, Jill

Another busy day! Ally had a check up at duPont today with the transplant team. Unfortunately Ally's liver functions are elevated again. Not so much that we had to stay but enough to cause some concern. As positive as we try to stay it is hard not to feel discouraged. Everytime there is a little set back like this we know that it puts Ally closer to needing another transplant.

Overall she looks great and you would never know that anything is wrong by looking at her. She had a great week home from the hospital. We did some bike riding, played outside and went to the park. Soon it will be time to go swimming at Grandma's house. Shane and I even got a night out. On Friday we had a wedding to go to. Ally had a nurse come and stay with her while we were gone ( thanks Kim!).

Ally will have lab work drawn later this week and we will see what her liver levels look like than. Shane and I are planning to go to the Beef and Beer this weekend depending on how Ally is doing. We have nursing coverage for her and Ashley has a babysitter. If anyone is interested there are about 20 tickets still available. You can contact my mom, Mary Kay Heimbach @ 610-367-6693.

Also don't forget the family fun day event at Galeotti Family Chiropractic Center 1003 Egypt Rd. Oaks. For more information call 610-935-3066. Located on the corner of Longford and Egypt Rds. Event is from 11am to 4pm admission is free donations will be accepted to benefit Ally's recovery fund.

We will update when we have some news on Ally's next labs.
Jill