Ally Heintz

What a busy weekend it was! Friday we took some time during the day to enjoy the nice weather before all the rain. We took a 4 mile bike ride with the girls. Little did we know, later that night we would be spending our night in the hospital. If we would of known, we would of conserved our energy and rest.

Friday Ally started a temp. It went as high as 103. We took her to the ER at duPont at 2 am, and spent the next 9 hours treating her for yet another line infection. We returned home, found a few hours to rest and prepared for another busy day.

Ally continues to need oxygen, and is still battling a fever.Most of the day she was fine and had no temp but this evening her temp was up to 103 again. We did just speak to her doc and they probably will want to see her again tomorrow. He said as of now her cultures are still negative, we will see how things look in the morning.

Crazy as we are we were determined to all show up in Philly for the Donor Dash today! The weather held off and the day turned out great. It was so nice to see all of our team there supporting us and Ally. Thank you for being there and taking a few hours of your weekend off to show your support for not just us, but to help the community fund the education of donor awareness!

Our team was made of family, friends, co-workers, nurses, and kids! We had over 30 team members, 4 who ran, and the rest participated in the walk. It was great to see others in our area, who were either donors or recipients of the gift of life. The day made me realize we were part of something special today. Today was a day you spent sometime looking at others enjoying the day, happy that someone thought to make the right decision to donate life so that all these folks could enjoy life again, and together. To see those young kids full of life, dancing, laughing, and enjoying time without a care in the world, brought a smile and hope that Ally one day could be doing the same thing as they were. Chances are, you, yourself will know someone who will either need blood, or an organ donation to save a life, and I hope you remember to make the right decision to donate!

Enjoy the photos of the team, and one last thank you to everyone for joining us, and who contributed to help fund the team. We look forward to you joining us next year in the DASH again!

-Shane

Hope everyone had some time to enjoy the holiday weekend, and the nice weather we had. Our weekend was busy as always, but found time to enjoy ourselves as a family.

Ashley and I spent Friday night and part of Saturday in the mountains for the opening of trout season. It's been a few years since I had some time to go fishing. It was Ashley's first time fishing, and of course when we hooked her first fish she freaked out! Needless to say she caught two trout, even beating daddy for the biggest fish! We had a fun time together.

While we were away, Ally and JIll ate dinner with her parents and spent some time together. However, late Saturday Jill caught a virsus and spent most of the day sick.

Easter came and Ashley couldn't wait to see if the Easter bunny visited the house. She quickly hopped out of bed, ran to the window, hoping to catch a glimpse of him in the yard. The girls had a great day. We went to church, had lunch at grandma's, two easter egg hunts, and finally dinner at my uncle's house. It was busy, but we are always up for busy, it fits our lifestyle now.

Enjoy the new photos from this weekend. Also, anyone interested in the dash please let us know soon, the team continues to grow. It always amazes me to see all the support we recieve from different folks at the various events for Ally. Thank you to all who joined or contributed. If you are still considering joining, please don't wait much longer, we would love to have all of you there if you could make it. Also please continue to include John and his family in your prayers!!!

-Shane

Hi everyone just a quick update because I don't have all that much to report. Ally's sleep study went fine it was pretty much uneventful. Ally slept pretty much the whole night and no alarms went off so I think she will pass just fine. We will not know the official results of her study for about a week and a half.

Thanks to all of you for all the prayers for John. I got to see him twice during this visit and today he was awake and joking around with me. I have seen John numerous times over the past month since his transplant and today he seemed on his way back to being the old John. He still has a long recovery including a transport tomorrow to Jefferson for some further testing on his new liver. Currently they are treating John for a rejection episode hopefully this will be his only one! Anyhow, keep the prayers coming for him they are obviously working.

Also don't forget to sign up for the Dash for organ donor awareness. The link is at the bottom of Ally's site. Registration for the walk goes up until the start of the event but after the 17th the registration fee is increased from $20 to $25. Also thanks to the many people who have already signed up or who have made a contribution.

Take care and have a wonderful Easter holiday. We are decorating eggs tomorrow and than I think Daddy and Ash are heading to the mountains for fishing while Ally and I go hang out a Grandmom and Pop's. We will all be home together on Easter day though to see what surpirses the bunny brings!!

Jill

I know I said that I would not update until after the sleep study but I lied! Anyhow, I am not really updating on Ally because she has been doing fine.

What I need is for everyone to say a prayer for our dear friends the Maichers. John has been having some more difficulties this week. His respiratory status has improved slightly and he has remained off the ventilator the past few days. However, John is having some problems with his new liver. John and his parents have been on a roller coaster ride for about a month now even though for them I'm sure it feels longer.

Please prayer for the Maichers to have strength and patience through this difficult time and please pray that John's liver begins to function again as it should.

Jill

P.S. Remember there is a link at the bottom of Ally's site to John's website. Please feel free to check that out and offer words of encouragement to the Maichers. John's mom often reads the site's guestbook entries to him. From my own personal experience I know how uplifting some of these messages can be.

Also I will still try to update Ally's site on Thursday after the sleep study. Hopefully Ally will sleep because I know Mommy won't.

It probably seems like forever since our last update. I know last week we really didn't give any info on Ally we just updated about the Dash for Organ Donor Awareness. Thanks to all the people who have signed up for our team. There is still time if you want to sign up. Early registration is till the 17th of April for a fee of $20. After that you can still register up until the 23rd but the fee is $25. Visit the link listed at the bottom of Ally's site for more info and remember to email us at aajsheintz@yahoo.com if you are signing up for the team.

Now onto your Ally update! She has been doing great and we actually have a lot of news to report. On Monday Ally had a check up with her pulmonologist. My main question was, "could Ally be decannulated?" and my answer, "I see no reason why she couldn't be, let's try to schedule for late this month or early May." Needless to say I was ecstatic!!!

Next Wednesday Ally will be spending the night at duPont for a sleep study and if all goes well with that than she is scheduled for a bronchoscopy and decannulation on May 9th. She will have a two to three day hospital stay at that time.

We also found out some more info from Pittsburgh. They finally made up there mind and want Ally to have the motility study done. This is scheduled for June 20th and 21st out at Colombus Childrens' Hospital in Ohio. Ally will be an inpatient for those two days. She is also supposed to go back to Pittsburgh for more checkups in June so we are trying to schedule those for later that same week. WOW! Summer vacation in Colombus and Pittsburgh. We probably are just going to make a week of it and that way we will get to have sometime exploring around Pittsburgh and to get more familiar with our surroundings.

No word about Ally receiving exception points. Pittsburgh seems to lack good long distance communication skills. I am praying she gets the exception points and that she gets transplanted before the trip to Colombus. It certainly is an added expense that Shane and I still pretty much feel is unnecessary. However, we are not the experts and Pittsburgh certainly is when it comes to bowel issues so that's why we will go for the motility study.

We have been busy filling our days with a lot of play time. Ally has also been busy with her therapies and is even trying to figure ou how to crawl. Her vocabulary is blossoming and I can't wait to hear how much she has to say once the trache is out. Last week we took a trip to Elmwood Park Zoo (thanks Aunt Jeanne). The girls had a good time and sometime I'll get Shane to put up some pictures.

Take care and I will update next week after the sleep study.

Jill