Ally Heintz

HAPPY VALENTINE'S DAY ALLY!

Well, looks like you, Ashley, and Ashleigh G. will have to be my Valentine girls for today! ;) What better than three great little girls!

Ally, today is a day your mommy and I have worked hard to put together for Ashleigh G. and her family. It's a day I know you would be proud of us both! Send us all those big smootches and hugs!

If anyone is still considering on attending today's event. Tickets will be available at the door. We have sold over 200, but have about 30 more to put us at full capacity!

BEEF 'N' BEER
February 14th
6 - 11p.m.

Keystone Fire Company
240 N Walnut St
Boyertown, PA 19512

Tickets are $25 each. TPrice includes all the beef and beer you can handle, as well as a night of music and dancing!! We also ask that you wear something "RED".


If you can not attend, please consider donating by making a check out to:

Angel Ally Memorial Fund
National Penn Bank, P.O. Box 547
Boyertown, PA 19512
MEMO: ASHLEIGH GIDEON


HUGS & KISSES to you ALLY!!!
Daddy

Happy Birthday baby girl!!! I'm sending you five big birthday kisses! Today is a day to be especially thankful. God gave us such a precious gift 5 years ago on the day you were born. I'm grateful for every moment we had with you and for all the wonderful memories you gave us!

I'll send up some balloons for you later today so keep an eye out for them! I pray today is your best birthday yet! Enjoy your special day!

I love you Ally!
Mommy

The story below captures the feelings and heart ache of what our last day were like, when Ally left to be with God and his other Angels. In the end, like this MOM I take comfort in knowing Ally is happy with the LORD, and continues to shine her light down on all of us! -Shane

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She jumped up as soon as she saw the surgeon come out of the operating room. She said: 'How is my little boy? Is he going to be all right? When can I see him?'

The surgeon said, 'I'm sorry. We did all we could, but your boy didn't make it.'

Sally said, 'Why do little children get cancer? Doesn't God care any more? Where were you, God, when my son needed you?'

The surgeon asked, 'Would you like some time alone with your son? One of the nurses will be out in a few minutes, before he's transported to the university.'

Sally asked the nurse to stay with her while she said good bye to son. She ran her fingers lovingly through his thick red curly hair. 'Would you like a lock of his hair?' the nurse asked. Sally nodded yes. The nurse cut a lock of the boy's hair, put it in a plastic bag and handed it to Sally..

The mother said, 'It was Jimmy's idea to donate his body to the University for Study. He said it might help somebody else. 'I said no at first, but Jimmy said, ' Mom , I won't be using it after I die. Maybe it will help some other little boy spend one more day with his Mom .' She went on, 'My Jimmy had a heart of gold. Always thinking of someone else. Always wanting to help others if he could.'

Sally walked out of Children's Mercy Hospital for the last time, after spending most of the last six months there. She put the bag with Jimmy's belongings on the seat beside her in the car.

The drive home was difficult. It was even harder to enter the empty house. She carried Jimmy's belongings, and the plastic bag with the lock of his hair to her son's room.

She started placing the model cars and other personal things back in his room exactly where he had always kept them. She lay down across his bed and, hugging his pillow, cried herself to sleep.

It was around midnight when Sally awoke. Lying beside her on the bed was a folded letter. The letter said:

'Dear Mom ,

I know you're going to miss me; but don't think that I will ever forget you, or stop loving you, just 'cause I'm not around to say 'I Love You'. I will always love you, Mom , even more with each day. Someday we will see each other again. Until then, if you want to adopt a little boy so you won't be so lonely, that's okay with me. He can have my room and old stuff to play with. But, if you decide to get a girl instead, she probably wouldn't like the same things us boys do. You'll have to buy her dolls and stuff girls like, you know.

Don't be sad thinking about me. This really is a neat place. Grandma and Grandpa met me as soon as I got here and showed me around some, but it will take a long time to see everything. The angels are so cool. I love to watch them fly. And, you know what? Jesus doesn't look like any of his pictures. Yet, when I saw Him, I knew it was Him. Jesus himself took me to see GOD! And guess what, Mom ? I got to sit on God's knee and talk to Him, like I was somebody important. That's when I told Him that I wanted to write you a letter, to tell you good bye and everything. But I already knew that wasn't allowed. Well, you know what Mom ? God handed me some paper and His own personal pen to write you this letter I think Gabriel is the name of the angel who is going to drop this letter off to you. God said for me t o give you the answ er to one of the questions you asked Him 'where was He when I needed him?' 'God said He was in the same place with me, as when His son Jesus was on the cross. He was right there, as He always is with all His children..

Oh, by the way, Mom , no one else can see what I've written except you.. To everyone else this is just a blank piece of paper. Isn't that cool? I have to give God His pen back now He needs it to write some more names in the Book of Life. Tonight I get to sit at the table with Jesus for supper. I'm sure the food will be great.

Oh, I almost forgot to tell you. I don't hurt anymore the cancer is all gone.. I'm glad because I couldn't stand that pain anymore and God couldn't stand to see me hurt so much, either. That's when He sent The Angel of Mercy to come get me. The Angel said I was a Special Delivery! How about that?

It was the perfect kind of day for you today Ally. Just the type of weather you loved, not too cold and definitely not hot! Ashley took your Lighting McQueen car for a spin and it reminded me of you driving it last year on the day Grandmom and Pop gave it to you. I still have a picture of you from that day on my phone!

It would've been a great day to take you and Ash to the park. You could've went on the swings. I bet you've mastered the big girl swing by now! Ash and I did the kid's yoga on TV today, the one you used to like where we pretend we are swimming! Ash can't wait for summer to come so she can really go swimming.

Thanks for sending me some little signs this week Ally. Ashley especially liked the one we saw yesterday morning! It was just what we both needed. We love you Al.

Mommy

P.S. We still have a bout 30 tickets left for the Angel Ally beef and beer benefit! All proceeds from this event will go to Ashleigh Gideon (to read more about her go to www.ashleighgideon.aboutmybaby.com). The event will be from 6 to 11 at Keystone Fire Hall. There will also be music by DJ Bruce Miller and we are asking everyone to wear red because Ally will just love that!

We would love to have you help us honor Ally's memory and sell out this event! If you are interested in tickets or need more info please send an email to aajsheint@yahoo.com or I can be reached at 484-942-8831.

Thank you,
Jill

Hi Ally baby! Just wanted to talk to you again before I went to bed. I hope you are good, even though I am sure you are! I guess you are busy up there helping God watch over all of us. Some of us down here need some extra special care right now. Remember to look out for little Zac too, his Mommy and Daddy are worried about him.

I think Ash missed you even more than usual this week, so we gave your picture extra kisses every night before bed. I slept in your bed last night so I could be right next to Ash and to help me feel closer to you. It doesn't smell like you though anymore, I miss that. Ashley's very concerned about your birthday and what we are going to do for it. I have some special ideas and of course I'll be sure to send you up some red balloons!

I miss you baby girl. Sleep well tonight and feel free to send down an Angel kiss or two, I sure could use some!

I love you,
Mommy

Hi baby girl! How are you? Today made three months since you went to heaven and I miss you more everyday. I try not to focus on it too much cause I know it's never going to change. Most days I just want time to stop so it won't feel like it has been so long since I've held you. When I'm done updating this I'll have to watch your video so I can hear your voice. It always makes me smile.

Ash made me laugh a little tonight when I put her to bed. She told me she wished you could just "poof" right back here and say your prayers with us at bedtime. Of course it also broke my heart, but hearing her say that reminded me of how sick you were last January when you were in Pittsburgh. I remember the one day Dr. Kyle came by and he was just as frustrated as I was that you were so sick again. He said to me why don't you just "Poof!" and make her all better! I told him if I could've done that I would've done it the day you were born!

I wish it were that simple. I wish when I wake up at night cause I think I hear your pump beeping, that it was actually beeping. Everyday I look at your meds and wish I still had to get them ready to give to you. I wish I knew the right words to say to Ashley when she tells me it's not fair that you aren't here anymore.

I wish for a lot of things and as much as I may want to be able to "poof" you back here I know it's not going to happen. I do know that you could've left us last January when you were so sick but thankfully God gave us some extra time with you.

No matter how much time I had I still miss you. I love you Al!
Mommy


Don't forget to honor Ally's memory by helping us to kick off our first Angel Ally Memorial Fundraiser, Beef and Beer event! Proceeds from this benefit will go to Ashleigh Gideon's family to help them cover the substantial out of pocket medical expenses associated with raising a chronically ill child. Ashleigh is a five year old little girl who has been diagnosed with conditions, Chiari Malformation and Cystic Fibrosis. To read more about Ashleigh please visit her website which is linked off of Ally's homepage.

BEEF 'N' BEER
February 14th
6 - 11p.m.
D.J. Bruce Miller

Keystone Fire Company
240 N Walnut St
Boyertown, PA 19512

Tickets are $25 each. Tickets are limited, so hurry!!! Price includes all the beef and beer you can handle, as well as a night of music and dancing!! We also ask that you wear something "RED".

To obtain tickets, contact Shane or I via email at aajsheintz@yahoo.com. If you have any additonal questions or prefer to call to reserve tickets I can be reached at 484-942-8831. Hurry, tickets are starting to go fast and may not be availabe at the door!

If you can not attend, please consider donating by making a check payable to:

Angel Ally Memorial Fund
National Penn Bank, P.O. Box 547
Boyertown, PA 19512
MEMO: ASHLEIGH GIDEON

Any and all donations will help Ashleigh and her family! Thank you for your support, and we look forward to seeing you at the BEEF 'N' BEER!

Jill

Since the start of this site 5 years ago, my visions and use for this site were to teach Ashley and Ally as a family to use this tool as a way to communicate the need to help others.

Well, the last few months have created some changes/challenges in that vision, but the core values of this site remain. Help others!

So it is my privilege to introduce to you the first "Angel Ally" recipient!

Ashleigh Gideon is a 5 year old little girl who suffers from Chiari Malformation and Cystic Fibrosis.

On April 2, 2008, Ashleigh was diagnosed with Chiari Malformation. The lower part of her brain is pressing on the bones of the lower part of her skull and her upper spine. This causes fluid build up in the spine. Fortunately, Ashleigh's spine looks really good with no fluid build up. She still gets an MRI every 6 months.

On June 13, 2008, Ashleigh was also diagnosed wih Cystic Fibrosis. The signs and symptoms of CF were present since birth, however it took the family and doctors awhile to figure out why Ashleigh struggled with her weight and constant cough.

Ashleigh's mother is a former resident of the Boyertown area, however is now living is Tennessee with her husband and 2 other children. The family takes trips to PA to visit family, but many of times have to reside in TENN. due to expenses with traveling, or Ashleigh not being well enough. The family also takes quite a few trips to CHOP which causes more loss of time and money.

So, this is where Jill and I need the help of all our Angels for Ally. On February 14th, we are planning the first ever "Angel Ally" benefit to help a child in need. All details in how you can help are below.

BEEF 'N' BEER
February 14th
6 - 11p.m.

Keystone Fire Company
240 N Walnut St
Boyertown, PA 19512

Tickets are $25 each. Tickets are limited, so hurry!!! Price includes all the beef and beer you can handle, as well as a night of music and dancing!! We also ask that you wear something "RED".

To obtain tickets, contact Jill or I via email at aajsheintz@yahoo.com, or pick up your tickets at the door. If you plan to pick up at the door, please email us and let us know. Any other questions, please email.

If you can not attend, please consider donating by making a check out to:

Angel Ally Memorial Fund
National Penn Bank, P.O. Box 547
Boyertown, PA 19512
MEMO: ASHLEIGH GIDEON

Any and all donations will help Ashleigh and her family! Thank you for your time and support, and look forward to seeing you at the BEEF 'N' BEER!

You can read more about Ashleigh off of Ally's homepage, in the link section.

Shane

Since Ally was born I have written an update at the end of every year to say how fortunate we are to have Ally in our lives. This year is no different! Everyday I thank God for every moment that we had with Ally. Do I wish we had more time with her? Every second I wish for that! I think the thing Shane and I struggle with the most is "Why?" I don't know if that will ever change. I want to share a story with you that Shane had found and had shared with one of Ally's surgeons. Maybe it helps explain the "Why" just a little.


"Tomorrow morning," the surgeon began, I'll open up your heart..." "You'll find Jesus there," the boy interrupted. The surgeon looked up, annoyed "I'll cut your heart open," he continued, to see how much damage has been done..." "But when you open up my heart, you'll find Jesus in there," said the boy. The surgeon looked to the parents, who sat quietly. "When I see how much damage has been done, I'll sew your heart and chest back up, and I'll plan what to do next." "But you'll find Jesus in my heart. The Bible says He lives there. The hymns all say He lives there. You'll find Him in my heart."

The surgeon had had enough. "I'll tell you what I'll find in you heart, I'll find damaged muscle, low blood supply, and weakened vessels. And I'll find out if I can make you well." "You'll find Jesus there too. He lives there."

The surgeon left. The surgeon sat in his office, recording his notes from the surgery,"...damaged aorta, damaged pulmonary vein, widespread muscle degeneration. No hope for transplant, no hope for cure. Therapy: pain killers and bed rest. Prognosis:," here he paused, "death within one year." He stopped the recorder, but there was more to be said. "Why?" he asked aloud "Why did You do this? You've put him here; You've put him in this pain; and You've cursed him to an early death. Why?"

The Lord answered and said, "The boy, My lamb, was not meant for your flock for long, for he is part of My flock, and will forever be. Here in My flock, he will feel no pain, and will be comforted as you cannot imagine. His parents will one day join him here, and they will know peace, and My flock will continue to grow."

The surgeon's tears were hot, but his anger was hotter. "You created that boy, and You created that heart. He'll be dead in months. Why?" The Lord answered, "The boy, My lamb, shall return to My flock, for He has DONE his DUTY: I did not put My lamb with your flock to lose him, but to retrieve another lost lamb." The surgeon wept. The surgeon sat beside the boy's bed; the boy's parents sat across from him. The boy awoke and whispered, "Did you cut open my heart?" "Yes," said the surgeon. "What did you find?" asked the boy. "I found Jesus there," said the surgeon.


Thank you to all the people who helped support, love, guide, and care for Ally, Ashley, Shane and myself throughout this past year. My thank you list continues to grow and someday maybe I will have the strength to tackle it. But for now thank you to all the doctors, nurses, and hospital staff, teachers, co-workers, clergy; friends, family, and an entire community for everything you all have done for us.

A special thank you to all the nurses, doctors and staff who worked so hard to save Ally on the morning that she went to be in Heaven. I am constantly haunted by the images of that day but I take great comfort in knowing that you all loved and cared for Ally so passionately and that now she is forever at peace.

I love you baby girl,
Mommy


We are planning to start the new year off on a good note so look for a great update New Year's day with some exciting news! Wishing everyone a very happy, healthy, and safe New Year!

Merry Christmas Angel! Santa left Ashley a note in your stocking at Daddy's. It said that he had talked to Jesus and delivered all your presents to Heaven. I hope you had fun with them I'm sure there was a bunch of Lighting McQuenn toys and probably some Mickey Mouse things too!

I know you were with us today but it was still hard not to hear your laugh and see your beautiful smile on Christmas morning.

Watch over Ash she didn't have the best day since she wasn't feeling well. Hopefully just a cold but I have a feeling her ears hurt again and she just doesn't want to tell us so we won't take her to the doctors.

I love you Ally.
Mommy

Don't stay up too late playing with your toys!
Merry Christmas.

A friend shared this poem with me and I would like to share it with all of you.

REMEMBERING

Go ahead and mention my child
The one that died, you know
Don't worry about hurting me further
The depth of my pain doesn't show.

Don't worry about making me cry
I'm already crying inside
Help me to heal by releasing
The tears that I try to hide.

I'm hurt when you just keep silent
Pretending it doesn't exist
I'd rather you'd mention my child
Knowing that she has been missed.

You ask me how I'm doing I say
"pretty good" or "fine"
But healing is something on-going
I feel it will take a lifetime.

By Elizabeth Dent

I miss you Ally, every second of every day. When I'm happy and when I am sad. No matter where I am or who I am with. I always miss you most though when I see Ashley because I know she misses you so much too. I would give anything to see the two of you sitting and playing and laughing together again.

Help us all to stay strong Ally and when we can't be strong any longer help us to accept the support others offer to us. I feel like everyday without you gets a little harder to make it through. I know people say the pain is something you get used to, I just don't know how.

I love you baby girl,
Mommy

Ashley made it back from her week in Disney! She seemed to have had allot of fun. Lots of stories to tell me, that's for sure.

On Sunday, Ashley, my parents, and myself spent the day driving to Delaware to deliver toys to the Ronald McDonald House. I've always said that once we had time to help others, I would find ways to teach my girls all of the good we could do to give back, like so many have done for our family. Sunday was a first of many plans I have to create new traditions for Ashley and myself. I want Ashley to remember places like Ronald McDonald House as places that were life savers towards our family. People who went above the call of just volunteering, but caring for us as family! Without charities like this, so many families lives would be much more difficult when caring for a sick child.

After coming home from our day trip to the RM House, Ashley looked at me and said, "It felt really good Dad to help all those kids!" She then said. "Maybe next time we can go to the hospital and deliver them to the kids ourselves!" I smiled and said it sounded like a great plan for next year!

In the coming months, I have been working with Jill, to help another family in need. More details will follow, but you may want to save the date of Feb. 14th 2009!!! ( A red day for sure!)
All the help would be appreciated to ease this families burdens, so they could spend more quality time with their children, instead of worry about medical costs.

Shane

Wow, I love the fact all of you "Shane" haters have come out to comment. If you read the last update and could actually understand what I wrote, you maybe would of not had such nasty things to write. Maybe I should of started the last update with "This message was approved by Jill"?? Would you of felt better?

You are all entitled to your opinion and can continue to leave your messages. I dealt with much harder comments in the past year and will continue to still hold my head high.

Never once did I say I was perfect, never once did I trash Jill, who is still the mother to my children. The only two people who understand any of this is Jill and I, none of you! Period.

If you don't like what you read, don't read the site! I started the site, I own the site, and I will continue to manage and use the site to encourage others to help support others in need.

The last update was discussed with Jill, she had the option of telling you all herself about the divorce. She couldn't find the words to do so, and allowed me. The last message intentions were not to be mean or harmful, they were meant to allow others to know what was going on incase they would see Jill or I with others in public, and also to express my feelings on what I tried to do my best with, with all I could do. I also was only expressing my concerns for Jill's well being and my hope she finds more than what she had.

I understand who it is that has the nasty comments, and maybe you could one day tell me where my wife actually went? You seem to know her better than I.

Here is an inside hint to what Jill hates the most (if you knew her so well, you probably already knew not to comment in this way):

Jill hates to hear comments on how "Wonderful", "Great" etc. a mother she is. Neither one of us like to have this type of pressure placed on us. But, of course you probably already knew this. . . right?

If you want to continue to leave your nasty comments, by all means send your hate mail to aajsheintz@yahoo.com. I would love to respond directly to you one on one.

If you have nothing nice to say, or can't comprehend what it is I may actually be going through after a year of losing my daughter, my wife and my family, then please don't bother coming back to the site.

Thanks!

Ally, tonight I write this update knowing that you already know the news of our family and that it has finally come to an end. As of Friday, mommy and I are no longer married. This was your mommy's wish and what she wanted. Daddy tried for one year to get your mommy to feel differently, but others stood in the way.

Ally, I gave your mommy the first chance at writing this update, but she said she could not find the words to explain it. If she can't explain it, GOD knows I can't either. I guess you nor I will never know, WHY?

All I know are the facts of how I approached life with our family. I gave every ounce of me. I gave you, Ashley and mommy a life of joy and happiness, and I am so proud of all I have accomplished. I know that I never caused you or Ashley pain, and I know I made all of the right decisions. What I know is that no other man, father, or husband, could have come close to what I was able to do!!! This I know for sure. I think this is why I can easily get through these days of hardship with my head held high.

Ally, I am so thankful that the week before you left to be with Jesus, I took the time to explain to you what was happening. You learned the truth, and knew I was not the one causing you pain. Ally you told me that your home was here with me, Ashley and your kitties, and this I know is true. I feel so comforted at home, (even when most times I am alone) I can really feel your presence and love. That day after we sat and talked, you gave me the biggest hug and kiss, and told me you loved me, and knew I never caused you hurt or pain. Thinking back to that moment, brings such relief and peace to my heart and soul!

Ally, watching your mommy from a distance, listening to how she is dealing with life, and all of the decisions she continues to make, I hope and pray you watch over her. Mommy is lost and is searching! She needs a point of light, and I no longer can be that for her. I tried so many times to extend my hand to pick her up, just like I had so many times in the past. I can't do that anymore. Ally, help mommy find some spiritual people in life, ones who will guide her in a life that Jesus and you would be proud of. Help her off this path of where she is now. I pray so much you can help her, and guide her broken heart.

Ally, I'm thankful that even though times are tough, I still am able to wake up each day. Not just wake up, but wake up with a smile on my face. And most of all, I'm thankful that no matter how bad things get, my faith will see me through.

No matter where you are in life, no matter how bad things may seem, God is in the blessing business. And that is reason enough to give thanks.

God works through people, and He has blessed me to have Ally and Ashley in my life. All of my friends continue to support me, encourage me and inspire me. So, I take this moment to say that I will keep my dreams alive. Every set back in life is only a set-up for a come back. I won't let other people stop me from living. I will live more, give more, love more and laugh more. The moment you stop laughing at life; Life will start laughing at you.

Miss you Ally! Daddy will always do what is best for you and Ashley and continue to lead a life that makes you proud to call me Daddy!

Happy Thanksgiving baby girl! I am sure you had a wonderful feast up in heaven. No tubes, no gagging, no eighty million food allergies. I wonder if you liked turkey (you know how I feel about it! Gross!!!)? Dessert is always my favorite but you didn't really care for anything with a sweet taste so you probably did eat the Turkey!

I am getting ready to go out shopping with your Aunt Kell( I know it's almost midnight but if I can't sleep I might as well do something!). Shopping for Christmas seems kind of silly when I know what everyone on my list wants the most they can't have. I just want to skip past the holidays, somedays it is too tiring to keep moving forward with all the celebrations of life. I will make the best of it for Ash though and for me cause that's what I have always tried to do. Besides no matter how much I may want the world to stop I know it is not going to and I certainly don't want to miss anytime to make the best of things.

I am glad Ash and I are headed to Disney next week with Grandmom and Pop (not to mention your Aunts, Uncles, and cousins too)! All that chaos should be enough to keep me distracted for another week! I think Ash will enjoy herself but I know you will be on her mind alot, we know how much you loved Mickey! Make sure you join us on a couple of rides, I'll keep my eye out for you!

I love you so much Ally. I miss you.
Mommy

Hi baby girl! It is almost Turkey day! Tomorrow in school Ashley is going to dress up as a pilgrim for Thanksgiving! There are a million things that I am thankful for but I am most thankful to have been blessed with two wonderful children!

I was looking through old photos tonight and found this one of you. I am guessing the photo was taken shortly after you came home from the hospital for the first time so you must be about 9 or 10 months old. It cracks me up! There you were with two tubes in your nose, hooked to a ventilator and probably IV fluids too! Not to mention those lovely yellow eyes and horrific rash all courtesy of end stage liver disease. Yet you are still smiling!

Thanks for your smile baby it always made my day. I try to remember it every time I think of you but sometimes I just can't stop picturing the way you looked at me that final night. I wish it wouldn't have scared me so much and that I could've comforted you more. Then maybe you would have given me one last smile.

Help me to remember all the happy times Ally and help your sis so that she can keep smiling!

I love you,
Mommy

Hi sweetie. How are you? You were on my mind constantly today, which isn't all that different than every other day but most days I try hard to stay busy and keep distracted. Today no matter how hard I tried not to think about it, that ache for you was still there.

I guess it was only fitting I received your death certificate in the mail today. I shouldn't have read it considering all day I was borderline breaking down, but I read it anyway. How can a piece of paper explain what happened that night when every time I replay the day in my head I still can't figure it out. How could you be at the park at 4:30 in the afternoon and twelve hours later be in cardiac arrest because you were so sick! I don't understand, I don't think I ever will. I don't know why I didn't take you to the hospital Saturday, I don't know why I didn't know you were that sick! It's making me crazy.....I wish I could just hold you or just hear your sweet little voice.

Thank you for my sign today, that's about the only thing that got me through the day. I don't think any of the kids had ever really said anything to me before when I have dropped Ash off at school but that little girl today couldn't wait to say hi to me. I almost kissed the kid when she said "look at my red shirt and there's a little girl on my shirt too! With wings!" I said "wow, it's just like an Angel" and she said no "she is an Angel!"

I love you baby girl,
Mommy

Thank you all for your your prayers for a safe trip to Pittsburgh. Ashley and I had a wonderful time and got to catch up with many of our Pittsburgh friends. I think the weekend was especailly good for Ashley and she in general just seemed to be very happy. Unfortunately, she now has a double ear infection so please continue to keep her in your prayers.

On the home page I listed some information about a new fundraiser Shane and I are working on together, along with a new local company, Glass Tears, Inc. Glass Tears mission is to help people through their darkest hours of loss by providing a symbol of love that will cast light upon their path. We feel blessed, to have been given these symbols of love and support, to display in our homes and would like to invite others who loved Ally to purchase one and do the same. As I listed on the home page, half of the proceeds will go to the Angel Ally Memorial Fund. In the next few months Shane and I are hoping to begin sharing Ally's fund with various families who have excessive medical expenses.

For more information please go to www.glasstears.com and there when you click the glass tears link, you will find "Ally's Tear". Also if you want to read the poem that comes with the tear, please click on the poem link. If you have any additional questions, please feel free to email Shane or I at aajsheintz@yahoo.com. Thank you again for all of your love and support.

Jill

Ashley and I are leaving for Pittsburgh this morning. We are excited to go and visit with some of our friends but I know it will be a difficult and emotional trip. Please say an extra prayer for us.

Someone sent me this poem written below, and it gives me a lot of comfort. Shortly after we arrived at duPont that last night I took Ally to the hospital. I kept thinking how are we going to do this again, why can't she just get a break, life should not have to be this hard for a little girl. In the last 30 minutes of Ally's life I watched her struggle so much and in her short life she had to work so hard to just stay alive. Maybe God thought the same thing and maybe he thought the lessons she could teach us here on Earth were over and that it was just time for her to rest.

Thank you all for your love and support. We are all forever grateful. Hopefully this poem brings you as much comfort as it does for me.

Jill

"God saw she was getting tired
and a cure was not to be.
So he put his arms around her
and whispered "come away with me."
With tearful eyes we watched her
and saw her fade away.
Although we loved her dearly
we could not make her stay.
A vibrant heart stopped beating,
loving hands are put to rest.
God broke our hearts to prove to us,
He only takes the best."

We love you Ally!

Another one of those sleepless nights! They seem to pretty much be the norm lately. I haven't written to you in a little while baby girl. Probably because most days I have just been too upset. I know you know that I think of you constantly and that I am always missing you. I am trying my best to be strong and stay positive but some days the sadness just kind of takes over.

Going back to work this week has been hard. I guess I never realized how much I talked about you and Ash to all my patients. Now I just don't know what to say to them. I can't stand to pretend like you never existed and I definitely can't speak of you as if you aren't here anymore cause I know you are always with me. It's just really hard to be around so many people who didn't know you, it is impossible for me to describe to them how wonderful you are.

I think most days I am saddest for Ashley, I just wanted her to have you forever. She loves you so much and took such good care of you. Its all of the little things in life that she will have to go through without a sister that really makes the pain of losing you even more unbearable.

Ashley did seem to have a pretty good Halloween though. It certainly was different for her considering since you were born we have spent every Halloween in the hospital! Not that Ashley ever complained about that because it usually meant twice the amount of candy and goodies! I am glad they did a parade at her school so at least she still had something different to look forward to.

I keep remembering Halloween last year in Pittsburgh. Patti bought you that beautiful Alice in Wonderland costume. Logan was the pirate and you guys exchanged pictures since you couldn't trick or treat! That was also one of the first days I say Tamiya, she was hanging out in her Jasmine costume! Ashley had such a blast too becuase she went to Jack's house to trick or treat in his neighborhood. I am glad we have so many great memories!

I miss you sweetie, please come and visit me soon. Everyone keeps telling me to watch for signs that you will come but I want you here now! I know your busy though watching over all of your friends. Please help to heal Anthony's pain, help John's drainage to slow down, and help Zachary get adjusted to life back at home! Don't forget to help all of their families too we know how much hard work they do and the strength they need to do it all.

Keep watching over Ashley let her know that its okay to be sad some days and that its also okay for her to just be a kid. Make sure she understands that she doesn't have to be strong for Daddy and I.

I love you baby girl,
Mommy

Hi baby girl! Were you up late again tonight watching the phillies? I bet you were. I know you are helping them win because they keep saying it is Red October and I know you would love that!

Ashley and I held your picture from school tonight. She gave you a kiss and so did I. She misses you but she is doing a lot of talking about you so I think that helps her. Mommy cried a lot Thursday and Friday but Ashley was with Daddy most of the time. Sometimes I am surprised by how much my heart actually hurts. Thanks for giving me the strength to do better the last two days.

We got pumpkins on Saturday! Ashley and I carved a silly face on your pumpkin cause we knew that is what you would like best. Ash made a happy face on hers and that certainly made me happy! We also painted a small pumpkin for you, there was a rainbow, a heart, your name, and a handprint from Ash.

Keep helping us be strong sweetie, and help us to remember all the good times. Please don't let me forget anything! I am going to go watch your video again, I love the sound of your sweet little voice. I wish I could feel your hand on my face one last time.

Goodnight baby girl.
Mommy

P.S. I am going to add some photos of Ash doing her pumpkins. Art therapy is a wonderful thing!

Yet another sleepless night Ally! Oh well by now I'm pretty much used to the lack of sleep. Thank you for taking care of Ashley this week. She seems so much happier now that she is back at school. She has also been asking a lot of questions and talking about how she feels so I know that helps. I know her questions help her to feel better but they make me so sad. She misses you and she feels like she is the only child without a sibling. Please keep helping mommy and daddy to take care of her the best we can.

Tomorrow Daddy and I are going to take her to get pumpkins. She asked if she can get you one, of course she can. I think she is going to paint it instead of carving it. She knows how you hated the texture of the inside of the pumpkin!

I was so upset with myself today, I know you wouldn't want me to sit around and be sad but it bothers me that I am able to function with life so normally. Maybe it is because I am so used to functioning in crisis mode but I think it is because I am numb and haven't allowed myself to feel the full impact of you being gone forever.

Last night I fell asleep watching your video, I love to hear your voice. I showed Daddy how to save your voice on his phone, now your his ringtone! It's so sweet. Of course I wish I had recorded more of your voice.

I love you baby girl!
Mommy

To everyone else, I am not sure if Shane or I have thanked everyone for all of your love prayers and support over the last week or so. We truly would not have made it through the week had it not been for all of the out pouring of sympathy. So whether you sent food or cards, said a prayer, gave a call, sent an email, made a donation to the Angel Ally Memorial Fund, or came to the services; THANK YOU!

I am going to try to get started on Thank you cards this week. If I miss anyone please don't be offended we appreciated everything everyone has done for us. Unfortunately I am not the most organized person so I have numerous thank you lists in numerous places so I am bound to miss someone.

Thank you again.
Jill

P.S. Speaking of the video I was talking about earlier here is the link to watch it!
http://vids.myspace.com/index.cfm?fuseaction=vids.individual&videoid=45058500
I will also add the link to the homepage where we have other links listed.
Thank You Zach Reinert @ WZAR internet TV for making this awesome video and for such a wonderful tribute to our Angel Ally!

Good morning Ally,

I woke up this morning, and something told me to turn on my cell phone. I did. You know how daddy doesn't like talking on the phone. It felt as if you were guiding my hands and fingers, I was led to an old saved text message with audio. The message was from August. When I clicked it I heard something I needed to hear! It was you! You said "Daddy I love You!" Ally I can't tell you how many times I have listened to it already!!! I really need to figure out how to save it and never lose that sound of your voice. Thank you Ally for guiding me to that message, it was buried in 300 old messages!!!

I feel so comforted knowing you are here with us, taking care of Ashley, Mommy, and Daddy! Please Ally continue to send me signs that you are ok, daddy really misses you!

We hope you loved your balloons Ally. You should count them, it's good practice! Ashley had a lot of questions tonight when we put her to bed. She wanted to know if you were going to watch over her while she slept. She asked if you were nocturnal!!! Don't ask me where she came up with that! I told her you would stay up if that's what she wanted you to do. She said you would need lots of energy to play in the clouds tomorrow so you better go to sleep too!

So sweet dreams! We miss you, we love you baby girl.
Mommy

Hi sweetie, the last couple of days have been long and very busy. Its good though it has kept your Daddy and I busy. I'm worried about tomorrow well technically today but I am still hoping to get some sleep. It will be nice to see everyone and for them to pay tribute to you but I know it will be difficult.

I got some special red things to wear. I know you will like them especially my shoes. Ashley and Daddy got some red things too. Be sure to let Ashley know how beautiful she looks. She misses you so much. She told me tonight that four years old is too young to go to heaven. It's breaking my heart to watch her please help Daddy and I take care of her and help guide us to do what is best for her.

I have to go now sweetie, I know I should try to get some sleep. I lay your blankies next to me when I sleep but, I guess you know that. They smell like you...I miss you. I love you baby girl!

Mommy

Good morning baby girl! I know its early but mommy can't sleep. I miss you. I think today will be especially hard because today is the first day that I won't get to see you, to touch you, to hold you, to smell you.

When I sat with you in my arms yesterday and today I felt like maybe I would be okay but now I sit and the pain in my heart is so strong. I don't understand how anyone can survive this pain. I know people do and I know I have to because of Ashley but I just don't know how. Please help Daddy and I to take care of Ashley she needs us all so much.

I miss you. I pray tonight, if I sleep, you will visit me in my dreams. Make sure you touch me so I can feel your wonderful soft hands. Call me Momma like you always did so that I can hear your precious voice. Don't leave me Ally, I never want to forget any part of you and I am so afraid I will. Let me know you are here with us. I know you are in a better place, no pain, no tubes, no hospitals, but I am selfish and I want you here.

I love you....I miss you.
Mommy


I know you have all been waiting to find out when services will be held for Ally and I will get to that in a minute. First, Shane and I want to thank everyone for all the support, prayers, and sympathy that you all have offered to us and our entire family. A special thanks for the prayers for Ashley. She really is our biggest concern and we are trying our best to help her but are struggling so much ourselves.

Second, we just want to thank everyone in the ICU at duPont for all their tremendous work in caring for Ally. I basically watched every minute of the care they provided for her the other night, but her little body just wanted to rest. Also thank you to all the wonderful staff who cared for Ashley, Shane and myself. Thank you for the stories you shared and the condolences that you offered.

Third we want to thank our parents. They started this journey with us five years ago when we first learned that Ally would be born with complications. They have held us up, they like Ally and Ashley, have been our rocks. Without them we truly would not have been able to make it through these last few years. We know their hearts are as broken as ours and we wish we could ease their pain.

I also know that there are a million other people to thank and a million phone calls and emails to return but there just doesn't seem to be enough time. Also thank you to everyone who has dropped off or prepared food. It has been delicious and a huge help unfortunately, at this time we are out of fridge and freezer space! So for right now please just send prayers, that is what we need most.

As for the services, we want everyone to know that you are welcome to attend. We know that Ally has touched many peoples lives and we want everyone to be able to come and honor her memory.

We will be accepting visitors on Friday October 17th from 4p.m. to 8p.m. in the Chapel at St. John 's Lutheran Church. Located at 45 North Reading Avenue Boyertown, Pa 19512.

A memorial service will also be held at St. John's Lutheran Church, in the Sanctuary. On Saturday, October 18th at 10:30a.m.

We are planning to have some type of luncheon after the service on Saturday but have not finalized any details. We will post more info on this at a later time.

In lieu of flowers we ask the contributions be made to the "Angel Ally Memorial Fund" National Penn Bank P.O. Box 547 Boyertown, Pa 19512

For those of you that may not know this, Ally loved the color red! We are asking that if you have anything red to wear please feel free to wear it to the services. Also if you were a member of Ally's Angels and would like to wear your t-shirt we know Ally would love to see people there in her shirt. Every time she would see us wearing her shirt she would say "you wearing my shirt?"

Again thank you for all of your support. If you have any additional questions please email us at aajsheintz@yahoo.com Shane added a bunch of new pictures today so make sure you check them all out!

Thank you,
Jill

Oh Ally!!! I woke up this morning early and walked into your room hoping yesterday was just an awful dream. Not to see you lying there has left me so empty.

Daddy misses you so much, and you only been gone one day. I wished so many times I could take your place and pain away, but today I really want too switch places!

We had so much fun these past few weeks, and you were so happy the other day. Why couldn't I see that you were not feeling so well?

We were supposed to go to Disney today to finally have your wish granted, and you left without us. Why, why couldn't you wait! I don't know how I am going to go on without caring for you. That is all mommy and daddy know how to do, is care for you.

My heart just breaks when I look around this house and all the toys you left sitting out. Your room, your cloths, the smell of you, how do I let that all go?

I swear I'm living a nightmare, I just want to wake up... no parent should ever be faced with losing their child. No parent should have to endure so much pain and heartache!

Ally, I want to be positive and strong for you and Ashley, but Daddy is so tired of being that person. I know the right things to do are to continue to help all those other sick children who need us and your Angel's presence, but how do I get that strength back?

Ally I know your home, and I hope you will wait for me to get there. Daddy misses you so much this morning, and love you, Ashley and Mommy with every bit of my heart!

Please Ally give me strength!


Love you, Daddy

As many of you or may have heard, today our little girl was called upon to take her trip with Jesus. You can't even begin to imagine what it's like to have put so much into raising a child like Ally, only without warning to have her taken from you. She was so happy yesterday and this weekend.

I'm not even sure what to say in this update, for the first time I am lost for words. Not too mention writing while crying never really works well.

Ally passed away this morning at 5:59 a.m. The staff at duPont hospital did everything they could to save her. It seems it may have been an infection, and her little heart couldn't go no more.
Jill was there to be with her, and just like Ally coming into this world, (which I missed) I also missed saying goodbye! Some father huh?

I can't write anymore, my headache is too much to bare. We will update soon with funeral services. Most likely they will be this Saturday.

Thank you for all the prayers and well wishes! Without such great support, we would have never had these past 4 great years as we did with Ally.

Please pray extra hard for Ashley, our poor girl has been through so much!!!!
Shane

Well Ally has escaped the hospital yet again! She was discharged on Sunday but for now we are staying in Pittsburgh to wrap up things at the apartment. Plus, Ally's docs wanted her to have some follow up labs and a few chest x-rays done today. Then she will be seen in clinic on Thursday and we will be headed back to Eastern Pa on Friday morning.

The girls are having a busy week. On top of cleaning up all the little things at the apartment they are trying to see as many of their Pittsburgh friends as possible. I am not sure when we will be back in town so I think I have us a little over scheduled so that hopefully we can see everyone before we head back. Tomorrow we have plans to see people all day and then I think Ashley will be catching up with a bunch of her school friends Thursday afternoon at the Children's Museum. They also asked if they could go to the zoo since there are two new baby elelphants and a tiger cub. But at this rate a trip to the zoo would be nearly impossible to fit into the schedule!

Please keep a few of our friends in your prayers this week. All of the families I am about to mention have websites linked off of Ally's homepage. I am sure they would all appreciate the support so feel free to leave them a message on their websites.

First the Maichers, John had an appointment at Georgetown last week to discuss being listed for a small bowel transplant. Please pray for John's strength and also his parents, Sandy and John. Also pray that his doctors will make the right decision in which surgery would be best for him. Second, please pray for Gavin and his family. Gavin has yet another line infection and yet another stay at Hotel duPont. The last 2 years have been such a struggle for this family and Gavin really needs to catch a break. Speaking of a break, please keep Zac and his family in your prayers too. His parents,Brian and Deeana, got some disappointing news today and again they all just need to have a little bit of luck on their side. Not to mention Deeana is due to have a baby in just a few weeks so catching a break would be nice:)

Thanks for the support and love you all have shown to us and all of these other families.

Take care,
Jill

I'm glad so many of you enjoyed the last update. Having great news is always exciting to post!

This week started out being very rough, but as of now Ally and I are getting by just fine here in Pittsburgh. The week had its bumps here and there, but in general turned out to be some great times with Ally and I. We had lots of playtime, watched movies, had fun running the halls chasing Dr. Kyle with a squirt gun, and at the same time Daddy was sure to keep up with his full time work at Vanguard via his computer.

I know some of you think that Mom is the only one that can care for Ally and all her needs, but that is just not the case. I too have been along this 4 year ride of hospitals stays, battling with balancing work, Ally's health issues, being the best father to Ally and Ashley that time would allow, and also the best husband I could be to JIll. Allot to balance, which in turn created many nights of me wondering if what I was doing was right for our family. I often wonder if many of the folks who read this site could even begin to imagine what life is like having to deal with all of these issues year after year? Issues I know that will never go away completely, but hope they lesson as time passes.

At the end of the day, I still don't know if all I did was right for our family. Some of you feel I may have done wrong, and if you thought that, then you should of spoke up. It always easy to be a back seat driver, or see things in hindsight. As far as I see our future, it will always have its challenges. I as well as Jill are well equipped and ready to face each and every obstacle life throws our way!!

I am extremely proud of what all of us as a family have overcome. I am forever grateful for all the love and care Jill has provided our girls while I was away working. With everyday that God allows Jill and I to be parents, I am amazed at how strong both our little girls have become!! Also, let us not forget to remember the 4 people JIll and I could not do without . . .our parents!! I can not tell you how much our parents have contributed to getting us to this point in Ally's recovery. All four of them have been our Angels to JIll and myself!

I guess the reason to write what I am writing is to give you my last final view of a Dad who was in crisis, who is now praying from this week forward some things will finally end, and new lives will begin. I so look forward to all the challenges GOD has in store for our family! Good or bad, we can get through them!

Thank you to all of our friends for your continued support. Thanks to all of the nurses, doctors, and medical staff for your unbelievable talents for caring and healing Ally. Thank you to all of my friends back at Vanguard for your continued love, support, and everyday worry of my family and myself! Everything you all have contributed has finally given us the chance to be a family!

Thanks, Shane

I guess you can't complain when you get three updates in one day, right? Well this update, is the best of the three!!!

Tonight I get to tell you about the small miracle that has been given to Ally and our family!

Today Ally had an echo of her heart, and CT scan of her chest. Early there was some worry that with having endocarditis and other breathing issues, that maybe a small blood clot leaked out into Ally's lungs. After reviewing the scan, the results were negative, no clot. That though is not the miracle but still an awesome result.

The miracle is that after further reviewing Ally's latest echo, it seems that the large area of endocarditis in her heart has completely gone away!!!!! To even write it brings tears to my eyes. Tears of complete joy, relief, and knowing that finally Ally got the huge break she needed. A break I have prayed for every night since knowing about the infection. I can't even describe the amount of relief this has brought to my mind. For our family it means we can start thinking more about staying home and trying to learn to finally live together as a family, all in one place. For Ashley and Ally, it means less hospital stays, and more time to become sisters.

When I heard of all of these results the first thing I thought was all of the effort to get here to PITT was worth just coming to hear those results! I would travel to hell and back, if I knew the results would keep my little girl healthy!

Thank you for all your continued prayers and support. Without you and GOD on our side, my little girl would not keep getting the miracles of life she continues to receive. Ally and Ashley are bound to one day be great women who will no doubt do many great things for others and their own families. As a father I will do everything in my power to ensure my daughters realize and use all of the miracles that have been blessed upon them, and learn to share with others the importance of how precious life and family really are!

Shane

As Jill mentioned in her last update, please take the time today and pray not only for Ally, but also her donor family that made the decision to give our Ally the Gift of Life!

Even though the last 24 hours have been exhausting for all of us, Ally did very well last night on her first helicopter ride from duPont to PITT. After the first 20 minutes into the flight, the hum and vibrations of the helicopter put Ally fast asleep. When we arrived at PITT just after midnight, Ally was admitted to the intermediate ICU. Besides doing well on the flight, once at the hospital, Ally numbers and demeanor were all looking allot better than at duPont. A chest x-ray was done, and at 3 a.m. Ally decided it was time to maybe start thinking about sleeping. That thought crossed my mind many hours before.

After Ally fell asleep, I gathered my work computer, and clothing bag and started my 3 mile hike from the hospital to our apartment on the Southside of Pittsburgh. Not a bad walk, but nothing you want to do at 3 a.m., a ton of baggage, exhausted, and all the while knowing that when you get to the apartment, all you have to sleep on is a floor! Everything in the apartment was cleaned out and the furniture returned, because we thought that after July we may never need the apartment again. Well, here we are a few weeks later and just a few days left to have the apartment and still have not escaped the grips of this town.

So far this morning Ally is doing great. She had an echo of her heart, and has been moved from the IICU to the floor 7 North. The plan for the rest of the day is to get CT scan of her chest. The doctors here think this is just Pneumonia causing ally to be sick, let's pray their right. We really need this endocarditis to disappear!

Jill is planning on working the rest of the week, and will be coming out to Pittsburgh on Thursday night.

Thanks for all the continued well wishes for our family and Ally!!
When we return home, I promise to upload all of the new photos from our week at the shore.

Shane

I always find it a little ironic that so many things in Ally's life seem to come full circle. July 28th 2007 we were heading to Pittsburgh, Ally had received her call for organs! I could never describe all the emotions that were felt that day, but the one I remember the most was the fear I felt. The fear of the unknown. One year later and I am struck with the same, crippling emotion....earlier tonight Ally was airlifted to Pittsburgh. Fear of the unknown has once again taken over my life.

Okay, maybe I am being a little melodramatic here, its certainly not like we are in the same boat as we were last year. We are not facing a 16hour surgery and overall Ally's health is about a thousand times better than last year. But still the irony of it all is so unnerving. I certainly had hoped that by a year post -transplant we would be spending a lot less time at the hospital.

I guess I better back up a little (no you did not miss an update, it has been a few weeks!). Since the last update Ally has been doing well, at least until we decided to go on vacation. Last Saturday we headed to the beach for a week. 12hours into our trip, Ally spiked a fever, no other symptoms. Mid week she spikes another temp, and once again bounces back, no other issues. Friday evening, she spikes again, needs a little oxygen but by Saturday morning she is looking good. Then she has a temp Saturday afternoon, Sunday morning, Sunday late afternoon, Sunday night, by Monday morning temp she has a temp of 103, is needing a liter of oxygen and she can still barely keep her sats above 90%. At this point its clear a trip to the hospital will be inevitable:(

Its very difficult for me to admit when I feel uncomfortable caring for Ally but I did not feel it was in her (or my) best interest to attempt a five hour drive to Pittsburgh. I decided to take her to our old stomping grounds, good ole, Hotel duPont! Unfortunately, no one at Hotel duPont feels comfortable caring for Ally either. Oh, don't get me wrong they were more than happy to see her, but no one really wanted to take responsibility for her care. Once she was stabilized Pittsburgh was contacted and arrangements were made for her to be transported. So Ally and Shane are in Pittsburgh, I had to stay home, my first full week back at work! The best laid plans......

As of now she is receiving IV antibiotics for what appears to be pneumonia (at least thats what the chest x-ray shows). I am not really convinced of this and figure when an echo is done we will have a more clear picture of what is really going on. My guess is the area of endocarditis is bigger or that it could possibly be shedding some of its layers of bacteria in turn, either could cause Ally to be sick. I also pray that I am wrong, that this is just simply pneumonia. A summer cold is probably pushing it, so lets just settle for pneumonia:( For now another ICU stay, although I am hoping she will be moved to the floor sometime tomorrow. Wishful thinking is what keeps me going most days!

Today when you pray for Ally's health to be restored please pray for peace and healing for her donor's family. I know the decision they made to donate is the reason I still have Ally here to pray for.

Jill

I dont know what it is with summertime, but time certainly does seem to get away from me! At least that sounds like a good reason why I have not been updating this site:)

Ally has been doing wonderful!!! She was finally officially discharged to home last Thursday. Since the last update I had written I believe she had another hospital stay, once again it was for fevers/line infection/endocarditis, same old stuff. The line cleared pretty quickly and the docs thought it was just best to pull the line and be done with any kind of central line! So Ally has been without a line since June 30th, her first time ever without IV access:):):) Can you tell I am excited about this?! No dressing changes, no IV fluids to hook up, no need for precautions prior to bathing or swimming and Ally is even more excited than me! She keeps showing people her arm and saying "no more line, its all gone!"

The only down side to no line is the need for Ally to be stuck everytime she needs labs:( Which unfortunately has been fairly frequent due to some of her numbers bouncing around. She also had a pretty high fever over the 4th of July weekend so we had some blood cultures drawn. Thankfully they stayed negative but her white count was ridiculously high so clearly some sort of infection was going on. I don't really care as long as whatever it was stays far away! I will take her Monday to have labs repeated again and hopefully then we can move on to labs once every two weeks.

As far as everything else goes we have just been busy trying to get settled back into life in Eastern Pa. There is a million things to unpack and organize but we are just doing things little by little. We have to head back out to Pittsburgh the first week in August to see transplant again. Plus Ally will also have another follow up echo and scope done. Also I will be cleaning out whatever is left in the apartment and turning in my keys!

The girls have been enjoying lots of time outside and are swimming a ton. Ashley has been swimming like a fish and I am amazed to see how much she has progressed in the last few weeks. Today she even jumped off the dive for the first time! She also has her first loose tooth which she has been waiting for forever, especially since Ally lost two back in the beginning of June. The days seem to be going by so quickly but we are cherishing every moment big or small:)

Have a great weekend. It is going to be gorgeous here!
Jill

I realize once again it has been awhile since I have updated you all on Ally but for once there was a method to my madness. Of course my method backfired so I figured I would just go ahead and update even though it won't quite be the update I had hoped to write.

First off I will start off with the good news, Ally got her trach out last Wednesday and has been doing wonderful without it. She was able to talk fairly loud with the trach but without her voice is even louder and much more clear. She is also so proud that it was taken out, she walks around lifting up her chin so that everyone can see!

Onto the other news. Today Ally's picc line was supposed to be pulled and transplant had planned to officially discharge us to home! Well apparently Ally was not quite ready to say goodbye to Pittsburgh so last night she spiked a temp. Blood cultures and labs were done today and we will find out those results tomorrow.

The really bad news is that we saw cardiology today and they said that if cultures grow they will try one more course of antibiotics but if the fever returns and cultures turn positive again than we will have to talk about surgery to remove the suspected endocarditis lesion.

Now some more bad news. Thanks to all of Ally's IV antibiotics (I am not really complaining about them because there has been no way for them to be avoided) she has some moderate hearing loss in both ears. The audiologist that we saw today recommended that Ally be fitted for hearing aids. Great! I am so glad we could add one more thing to her list of problems!

Can you tell it was a frustrating day? Though tomorrow is likely to be even worse if the docs make me bring Ally in to be admitted for positive cultures!

Since it is already 1 am I better just get to bed and focus on positive thoughts:)

Jill

I think it has been almost two weeks since I have updated so I will try to keep it as brief as possible. This was not one of those times where no news has meant good news, it just meant that I had a computer that was not working!

We did make it home for Memorial Day weekend and had a great time visiting with family and friends. I know the girls enjoyed their time at home a lot, especially all the time they got to spend with their cousins:) Unfortunately Ally and I had our trip cut short when she spiked a fever on Memorial Day. Once I got her fever down and felt comfortable with how she was acting we hightailed it back to Pittsburgh. I was worried that she would start to act septic again and I did not want her to have to be admitted at home and then transported out to Pittsburgh (just to much of a hassle and probably would mean more time in the hospital).

Thankfully all went great on our trip back and Ally did not have another fever. Unfortunately once transplant got wind of the fever they made me take her in to be admitted, blood cultures were drawn and in less then 24 hours we had a positive culture. I of course was not surprised by any of this because I was already having problems with the one port of her central line prior to even heading home for Memorial Day weekend. So last Thursday her line was pulled and a picc was placed. The picc needs to make it through this round of IV antibiotics and then an echo will be repeated to check on the endocarditis. If cardiology is okay with how things look then the picc will be pulled and Ally will be without a line for the first time in her life!!! This also means she needs to keep up with her drinking so that she does not become dehydrated but I will bribe her with almost anything to keep that line out of her:)

Next up is a million appointments this month to try and wrap things up so that we can head home to stay. This week we are trying to schedule a last minute bronchoscopy. If all looks good then next week when she has her sleep study they will downsize her trach and cap her off for the night. Then if all goes well that night the next day they will pull the trach out and observe her for another 24 hours and Ally will be decannulated for the second time!

I think this week we have 4 more appointments scheduled plus hopefully the bronch so it will be busy. Ashley has been home since last Friday so I am missing her terribly but when I talk to her on the phone she sounds so happy to be at home. Ally and I will be headed home for the weekend. What did I used to do with all my free time???

Take care,
Jill

So sorry for the delay in updating you all on Ally. She has been home from the hospital again for a week now. We had also headed home to our house for this past weekend so things have been very busy. She is doing well and looking great. Her line did stay in because her cultures had remained negative. She will be continuing on IV antibiotics until the second week in June and then we will follow up with another echocardiogram and an appointment with cardiology. So we will wait and see how things look then.

Ashley had her last day of school on Tuesday and she had her Kindergarten Graduation today. We took a lot of pictures and video so we will try to add it to the site soon (along with some from the trike-a-thon). After graduation there was a picnic for the whole school and Ashley got to enjoy time with her friends and teachers. It was such a terrific day filled with many reminders and memories of how much Ashley has changed and grown in the past year. Living in Pittsburgh has been a great experience for Ashley. It has given her the opportunity to try many different things and has given her the chance to make many wonderful friends along the way. She has had to deal with and overcome so many things in her five short years of life. I am incredibly proud of her and I am amazed by what a strong little girl she is.

Hope you all enjoy your holiday weekend. Certainly make the most of it, I know we will!

Jill

Ally is still in the hospital hanging out in her old stomping grounds on the transplant floor. She is looking and acting remarkably well and today she finally has a negative culture!!! Infectious disease thinks it might still be a good idea to pull the line and place a picc line. This is because Ally has grown two different types of bacteria, one of which is the same kind that was previously assocaited with the area of endocarditis. The problem is she will need a line for another 6 weeks of IV antibiotics and Ally has never had a picc for that amount of time and I am not sure how well it will work.

Right now the plan is to keep the line in if we can keep it cleared but if we begin to have any trouble with it (flushing or blood return) then we should return to the hospital and have it removed and then have a picc placed. Then hopefully at the end of 6 weeks the line can be pulled and she will no longer need any type of central line access!

Of course that was the plan this morning and since we all know how well Ally sticks to the plan we will wait and see if the plan is still the same tomorrow!

Jill
Jill

I have always hated updating this site with bad news but it seems even more difficult to update with bad news now after having such a long stretch of good updates. So the bad news, Ally is back in the hospital.

Its kind of all a long story but I brought her to the ER yesterday because she began acting sick (septic shock sick). After a long time in the ER we were admitted to the IICU. The docs felt she needed to be monitored more closely than what she would be on the floor so we settled for the IICU.

Today Ally is looking a world better than yesterday. She does have positive cultures from both broviac lumens. Currently her peripheral is still negative. There is a lot of discussion if this is a true line infection or if this is a piece of bacteria that has broken off from the endocarditis lesion (which after 6 weeks of IV antibiotics looks about the same).

Infectious disease, cardiology, and transplant are all putting their heads together to come up with the best plan. We all know what Ally really needs is to get rid of her central line but it is hard to do that when she keeps needing IV antibiotics! Cardiology did tell me that at this point there would still be no reason to think that she would need surgery to remove this lestion so that was a bit of good news for the day. Plus like I said Ally is looking good and at the end of the day that is all I really care about.

I know Shane added some pictures from the walk and also some video from Ashley's schools trike-a-thon for Ally's Angels (there is also a link to a news story). The trike-a-thon was wonderful, the kids had a blast. I am incredibly touched by the hard work that the teachers, parents, and children put into this event. It was truly a touching day and a memory I will always cherish. They also made a beautiful book of pictures from the event for Ashley and Ally so that they can always remember the day.

I may update again before but in case I don't, Happy Mother's Day.

Jill

I know I have not really written an update about Ally in awhile so I will try my best to bring you all up to speed but still try to keep this fairly short.

The girls have been doing great and have just really been busy enjoying their time at home with each other. We have had more walks and trips to the park then I can count in the past few weeks. The weather this past week had a lot to be desired but we still managed one trip to the park and two playdates. Part of me thinks Ashley will be a little bit bored when she no longer has the city life that she has now but I'm sure she will be kept busy all summer catching up with all of her cousins at her Gram's and Grandmom's.

Now that Ally really has no medical complications standing in her way we are working on getting her caught up developmentally with things. Feeding will be one of our biggest challenges. Eventually Ally will take all of her calories by mouth but we are years aways from that. Not that I am complaining, she will get there at some point and in the big picture of things I am fine with that. However it is a daily struggle to just get her to touch or smell food so just imagaine what it will be like to get her to willingly put food into her mouth!

Physically Ally has been getting more of her strength back. She is not quite back to where she was last year before transplant but she is definitely getting close. She has also been fitted for some orthotic type braces for her feet that should help her some with her walking. She of course hates them but hopefully she will be used to them soon. Which brings me to another one of my latest challenges, shoe shopping! Definitely something I would have never thought I would have a problem with. However finding shoes that these braces fit into has been nearly impossible. Not to mention Ally picked the colors for the braces and she did not pick anything subtle or girly, she picked bright red straps and red white and blue straps! Not the most fashionable choice but she picked so I will just deal with it:)

On Monday Ashley's school is holding a trike-a-thon for the kindergarten class in which the money they raised went to our Ally's Angels team for the gift of life donor walk. Together the children at the school have raised over $2,500!!! All of the kids are very excited to participate in this event and Ally will be there to help cheer them on. Ashley's teachers and some of the other childrens' mothers have coordinated this whole thing and they have certainly put a lot of time and effort into it so it should be a lot of fun.

Otherwise transplant clinic has gone well and Ally's labs have continued to look good. The docs have been able to decrease some of her meds and IV fluids so that is another step in the right direction. She is still on IV antibiotics for another week or so for the endocarditis. She had an echocardiogram done the other week and we are still waiting on those results to find out if there is anything else we need to do or if things are all cleared up.

If you have been following up on Zac thank you for all the prayers and support. I know his family appreciates it. He is doing well and has had one trip back to the OR since transplant. He will probably be headed there again early next week so please continue to keep him in your prayers.

Hope you all enjoy the Spring weather!
Take care,
Jill

I know many of you have been following Zac's story since we shared it with you a few weeks ago so I wanted to share the news that Zac is currently in the OR getting his second chance at life! His mom called me this morning to let me know that they had gotten the call around 3am and that Zac had just been taken into the OR (around 8am).

Please say some extra prayers for Zac and his family today they will all need a lot of strength to get through these next couple of days. Also remember to include Zac's donor family in your prayers. The decision that their family has made in the face of tragedy is the only reason Zac will be getting his second chance at life.

If you would like to follow Zac's story more closely you can do so via the link on Ally's homepage. Jodee if you are reading this hang in there Matisse is next!

Jill