Ally Heintz » June 2007 Journal Entries » AboutMyBaby - online baby scrapbooks, photo albums, videos, birth and pregnancy announcements

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Sun, Jun 24, 2007 10:13 PM
Well, not to much to report. Ally had a pretty good week. It was definitely very busy and she manages to keep up with the pace. Her liver numbers had been up again with her labs last week so the docs decided to put her on some IV antibiotics to treat a possible infection in her liver. Needless to say she has been on this since last Tuesday and I don't really see a change in her. She will have labs done again tomorrow morning so we'll know those results by tomorrow afternoon or Tuesday morning.

I scheduled a last minute checkup appointment for Ally in Pittsburgh so we are headed out there on Wednesday. Poor Shane will be stuck at home by himself. My mom, Ally and I are headed to Pittsburgh and Ashley is headed to the Poconos with her Gram for two days. I am sure he'll manage and probably enjoy the peace and quiet. Besides when the girls and I are living in Pittsburgh he'll have a lot of quiet nights so he better get used to it. I am anxious to see what Pittsburgh has to say about Ally's labs and to see if they have any suggestions. I really think there is nothing to do and it is just normal progression of her liver disease. The only thing that will really help her is to get transplanted.

On the up swing we had a great week spending lots of time outside. We were on a couple of bike rides and Ashley now has a tandem bike that hooks on to mine (and I even manage to keep us upright, which trust me is no small miracle). The girls also spent a lot of time swimming this week and we even took some more video although, I am not sure when Shane we'll get around to putting that up (maybe Wednesday night)! Everyone keeps commenting on the video we put up last week, especially the one of the girls in the pool. On Thursday night we went to the Reading Phillies game for their Gift of Life night. Our family was recognized for the funds we raised for this years Donor Dash (by the way that was over $24,000!!!). We stayed for the whole game and the fireworks after the game. The girls had a blast and Ally got to see fireworks for the first time!

Well like I said we have been busy living life. Unfortunately all of these outings have lead to a lot of extra wash, which is what I must go do now. :(

I'll try to update after we get Ally's labs back.
Jill

Please say an extra prayer for our buddy John. He is headed to John Hopkins hospital tomorrow for a procedure. Also Shane's cousin Lisa is in the ICU at Lehigh Valley Hospital. Lisa had a kidney transplant about two years ago and now she is waiting for a pancreas. Needless to say she is battling an infection so like I said she could use some extra prayers. Lastly pray for our friends the DiCesare's. Anthony is a little boy with similar problems to Ally ( we have a link to his site from Ally's home page). Thankfully he has been doing well but his mom (Sandra) had what should have been outpatient surgery done a few weeks ago and she ended up having some major complications which kept her in the hospital for the last two weeks. All of these people need your prayers I am sure they all feel as if they never get a break.

Thanks!

Comments:
stephanie: Hey guys, Glad to hear everything is still going well for Ally. You will continue to be in our prayers for more good updates. Hang in there, the living away from home can be rough and expensive.

Kristin at RMH: Hope things are continuing to go well. I think of all of you often.

cris: ahhhhhhhhhh moment. Love and prayers to all.

Cris Matlack: We saw Ally's pic going down Rt. 100 and it was an

phil haddad: Glad to hear that things are going well and glad to hear that the girls had a blast at the r-phils game on thurs night. I was there fri night w/ church

HEY SHANE BIG PARTY SINCE THE BOSS ISN'T HOME RIGHT???

Just kidding Jill

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Sun, Jun 17, 2007 9:15 PM
Happy Father's Day!!!

I hope everyone had a wonderful week and a wonderful Father's day. I think Shane was just enjoying the fact that we were home. We had brunch at my parents and the girls got to spend some time with their cousins and in the pool. Later this evening Shane's parents and my parents came over for dinner. We had a very nice day.

Shane put some new pictures and video on the site yesterday so be sure and check that out. I had to bug him all week because I am pretty much computer illiterate so I don't know how to do pictures or video. The videos are too cute!

Ally has had a good week. Her bili and her other liver enzyemes were up again with her labs. The rest of her numbers were pretty good. She had a check up at duPont on Thursday. She had also had a low grade fever on Thursday but thankfully nothing since then. The docs are a little concerned about her bili because since her transplant her bili levels have never been elevated. Her other liver numbers always bounce around but not the bili. We had not been too concerned because we know Ally is already listed for another liver but since her numbers have been increasing kind of rapidly they may need to look into things a little further (ultrasound and possibly a liver biopsy). First the docs will see how tomorrow's labs look. We all thought Ally looked a little better yesterday and today. Of course this may just be wishful thinking or we could just be getting used to her bronze tan.

We did talk to Boston this past week and had set up to go up there next week. Unfortunately later that day we received a call from our insurance to tell us that Boston is not considered a center of excellence for bowel transplants because they have not been doing the bowel transplants all that long (this does not mean that Boston is not an excellent hospital or that their bowel program isn't good it just means they have not been doing them long enough to receive this recognition). Unfortunately for us that means Boston would be considered an out of network hospital and we would be looking at a tremendous amount of out of pocket fees. Also we would not receive a travel and living expense fund like we can receive with Pittsburgh. We are still talking to Boston but it is looking like we probably won't be able to take Ally there to be listed.

At first I was very upset about the insurance thing with Boston but the more I think about it I think things will be okay. Don't get me wrong I am still frustrated with our insurance and the fact that this is even something I have to worry about. However, at the same time I think maybe my prayers have been answered. For months Shane and I have been struggling with the idea of double listing Ally. Then we decided to pursue Georgetown and that got us nowhere (and our insurance approved that trip). Then we decided to persue Boston and we finally get things arrranged and all this insurance stuff comes about. Deep down I would love to just stay at Pittsburgh and all of this time I have been praying for God to help us decide if we should double list Ally and where. Maybe through all of these road blocks God is telling us to just stick it out with Pittsburgh and that Ally's call is coming soon! Anyhow, I guess we will wait and see what his plan is for us!

Happy Father's Day!
Jill

Comments:
Dayle and Dave: The video was great. So glad you all had a wonderful Father's Day.
You are always in our prayers.

Kim Donohue: Hey Jill!!
When are you coming swimming??? Kate and Remi are ready to see Ally!
I'll email you!
Glad all is well and you are home for so long.
Kim

brenda norman: hi ,just want you to know we are always thinking of you and praying ally's trip to pittsburgh will come soon we just got new computor so we are back online thats why i haven't written but deena kept me updated. brenda

Sheri Waldman: Hey Jill, I've been thinking about you guys alot. Glad to hear that you are enjoying time at home w/the girls and that Ally is doing well. We will continue to keep you in our prayers! Hope to see you guys soon.

phil haddad: glad to hear that Ally is doing well, and shane had the best father's day gift being at home

Sandy: I really enjoyed watching the new videos of the girls. I am glad that you have been able to spend some much needed time at home. I keep praying that you get that call soon.

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Sun, Jun 10, 2007 9:42 PM
I hate to update this site when things are going so well because it always seems to be a jinx. However, I know many people have been curious and asking how things are going with Ally.

The last 10 days or so have been extremely busy and the girls are enjoying the summer like weather. We made two trips to Grandmom's pool and the girls enjoy their baby pool at home. I took video of them in the pool so I will have Shane put that on the site. Also, today the girls sang togther in church and we video taped so hopefully he can put it all on this week.

As far as transplant stuff goes we talked to Boston again on Friday. There is apparently an epidemic at transplant facilities and all of the coordinators have lost their communication skills. Needless to say they have done nothing so far to get Ally up there for an evaluation. They called to ask for our insurance info ( which I had already given two weeks earlier) and to ask for a medical release form (which I had faxed back to them on Monday). So we are frustrated all around and at this point still just praying that her call will come soon from Pittsburgh.

Ally is looking good, as long as you can get past her yellowish hue. Which isn't terribly noticeable but her yellow eyes you can't miss. Her bili went up slightly with last weeks labs but not a huge change. Her liver numbers aren't really all that concerning to us because they probably will just continue to rise until she gets the transplant. They are still miles away from being critical or from her having bleeds like she had when she had needed her first transplant. Her bowel function is just so poor right now that she rarely stools so she can not excrete the bilirubin. So for now we will put her in a lot of pink clothes and avoid yellow and green.

Ally has been getting around pretty well and is keeping up with Ashley as best as she can. I think this week I will put a call in to her therapists and try to get some sessions started with OT and PT. As much as I miss our wonderful night nurse (and some of my sleep) I love having so much alone time as a family. Ashley loves having Ally in her room and Ally seems to be equally excited. It means everything to me to be able to tuck the girls in at night together. That is a huge change from three months of tucking Ally in at the hospital and either saying goodnight to Ashley by phone or tucking her in at the Ronald McDonald House.

So many times over the past week I have caught myself just sitting and watching the girls play together. Their laughter and giggles fill my heart with so much happiness. I feel so blessed to be a part of their lives.

Take care,
Jill

Comments:
Ruth Dierolf: All of you will continue to be in my prayers daily. It is such good news that you call all be home together. Savor every moment. May God bless you all, my prayers will always continue.

uni-brower: so glad that you all are home together-enjoying each other-prayers are still strong-take care and enjoy Summer

Cris: And we are all SO blessed to just know you and love all of you. Sit and breathe in every single minute, because even with the healthiest of children the time just flies by. It seems like yesterday you and Matthew were singing at St. John's and your Mom and I sat there in amazement too! Enjoy it all!

phil Haddad: Hi Heintz family,
It was great to see you guys at fun days the other day. To bad we couldn't chat longer, but the boss (Ally) didn't want to sit still (=
can't say that I can blame her

Pastor and Kathy Pearson: Jill & Shane, I understand that I missed Ally singing with the Nursery Class at the 9:20 service on Sunday! I was home sick with a bad cold. Pastor & Kathy Pearson

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