Ally Heintz

Another week has gone by and Ally is still doing well! Although that doesn't mean she is not up to some of her old tricks. Lately she has been busy ripping off her central line dressing. Many times in the past week either her nurses or I have found her with her dressing completely off and the central access point exposed. Also she is scooting around so much that her bag on her G-J tube site does not stay on for more than a day. This usually means Ally is draining all over the floor and we are always cleaning up a mess!

Mostly it is just nice to see her so active. Ashley loves having her at home and I even get great pleasure when I see them fighting over toys or the TV because I know that is normal sibling behavior. It has been so wonderful having this long spell (almost six weeks) at home.

Ally finished her IV antibiotics on Thursday night so hopefully she will make it at least a couple of weeks without any infections. She isn't scheduled for any appointments until February 16th which is exactly one year since her transplant. That day she is scheduled with transplant and also is having a sweat test done which test for cystic fibrosis. Ally has never been tested for that and although no one really thinks she has it, transplant in Pittsburgh wanted the test done.

We also scheduled a follow up appointment for Ally in Pittsburgh which is March 16th this is supposed to be just an outpatient appointment but her transplant coordinator was going to check if Ally needs anything else while we are there. We still haven't heard anything about Ally's motility study that is supposed to be done in Ohio and frankly I am sick of asking about it.

Ally's birthday is quickly approaching and next weekend we will be busy with her birthday parties and Superbowl. Go STEELERS! After all Pittsburgh will be our temporary new home. Next week we will update with some birthday pictures.

Ally's breakfast at St. John's church is coming up soon. Saturday Februay the 11th. Tickets are $6 for adults and $4 for seniors and children 12 and under. Breakfast will be served from 7-noon. We will soon have tickets available for Ally's beef and beer which is Saturday March 4th. Tickets for that will be $20 a person.

Take care and have a good week.

Jill

Ally has been doing fine this past week. She is really getting to like being at home. She has been trying to say alot of different words and has learned to scoot across the room on her bottom. She also has been able to put more weight on her legs, allowing her to stand (not by herself of course).

In general everything this week has been fine. Maybe its because Ally is still on her antibiotic? Who knows. Whatever the reason, we'll take it. Its only a matter of time until the days of hospital visiits begins once more. This right now is kinda of like the calm before the storm. So now we are enjoying every day together, just playing and having fun!

As you all may be aware, Ally has two benefits in next few months. The first is the breakfast at St. John's Evangelical Lutheran Church, in Boyertown, PA.

As of now we are in need of volunteers to help with breakfast from 7am to 12 noon; and also 12 noon to 2pm for help with clean-up. Also, if you are interested in making any baked goods for donations, please let us know.

Anyone interested in volunteering, please email us at aajsheintz@yahoo.com. We look forward to seeing everyone there, and hope to bring Ally to the benefit somewhere in the morning hours.

Well now that the hustle and bustle of the holiday season is over, Ally has taken it upon herself to keep us busy.

The weekend was nice and so was Monday. Monday night however I noticed Ally's heartrate was on a steady increase, which always make me think fever. Of course just Ally's luck that is what it was. Tuesday morning I put a call in to transplant and let them know that she had a fever but was acting fine and was not requiring any oxygen. They wanted a blood culture so we headed to Phoenixville hospital.

Wednesday morning I got a call saying that Ally's blood culture was positive. We needed to go to day medicine for an IV dose of antibiotics as long as Ally was still acting okay and no reaction to the antibiotic she was allowed to come home. Four hours and one very rainy drive later we arrived back at home. Ally will continue on IV antibiotics at home for ten days. She also needs another blood culture tomorrow. If that culture would be positive we may need to take her down to duPont over the weekend. We'll see!

Everything else has been going okay. The x-rays taken last week showed no signs over any fractures in Ally's hips or legs but it did show that her bone density is still pretty poor. The have increased her calcium supplement and may consider giving her some additional vitamin D. Her therapies will be starting up again next week here at home.

We are also trying to adjust to Shane's new work schedule. Shane had put in for a compressed work schedule so that when we do go out to Pittsburgh he will be off on Fridays which will allow him to use less vacation time. However, he leaves the house around 6a.m. and doesn't return until 6:30 p.m. This make for a long day for him and I. Thankfully we are rewarded when Friday comes and we have three days at home together. Plus don't feel that bad for him because this weekend he has a four day weekend because of Monday's holiday.

Take care and we will update if there are any changes over the weekend.

Jill

Ally had a checkup today at transplant clinic. She has been doing well and for the most part her checkup went well. Of course Ally now understands when we get to the hospital what is going on so she pretty much cried for her whole appointment.

We have advanced Ally to 8cc/hour of formula. Unfortunately she has lost some weight since leaving the hospital two weeks ago so I am hoping they do not increase her TPN. She is also back to her regular CPAP settings and has been off oxygen for a little over a week.

Today our concerns were mostly minor. Her central line site is pretty red so we hope that does not mean an infection is starting. Also we have been having a hard time getting Ally to stand or to push off with her one leg. When they examined her today her doctor thought that her left hip seemed very tight and decided to get an x-ray just to check things out. I am planning to talk to him tomorrow. I really think nothing major is going on part of it I think is just Ally being lazy and not wanting to do her physical therapy work, we'll see.

Ally will be due for labs again on Monday and we are not due back at duPont until February 16th. That is also Ally's one year anniversary for her transplant.

We also just wanted to let everyone know about some fundraisers coming up for Ally. the first one is Saturday February 11th. This will be a breakfast at St. John's Lutheran Church in Boyertown, PA. They had held one last year for Ally too. The breakfast will be from 7a.m. until noon. We are hoping to attend with Ally. We will update with more info closer to the date. If anyone is interested in helping they can contact LuAnn Reichart (Ally's great aunt) at 610-367-0363.

The second fundraiser will be another Beef and Beer on Saturday March 4th. This event will be from 7pm until 11pm and will be held at Keystone Fire Hall. Bruce Miller will be the DJ. Tickets are not available yet and we will keep you posted when they are, we just wanted to give you all a chance to save these dates.

Hope everyone is finding that the password is working out okay. please email us if you are having any problems aajsheintz@yahoo.com

Take care,
Jill

Happy New Year!

Ally is still home and doing well. She is only feeding at 6cc/hour, but is feeling happy. We are trying to make it our second week in a row home...we'll see if we can break our 6 week record.

Not much news to report about transplant. We are waiting to see when Ally will make her trip to Ohio for a motility study.

Other that we are keeping busy with both girls. Ashley has been sick the last few days with an ear ache and voimiting. We were also without night nursing help over the holidays, so we have been up alot with both Ally and Ashley. The fun never ends.