Ally Heintz

May 2007

  • Thu, May 31, 2007 12:44 PM

    Yeah, we are heading home. This was by far our shortest and healthiest stay in a long time. Other than Ally's fevers Tuesday and yesterday morning, she has shown no other signs of being sick. She has been extremely active and happy. She has not had a fever since yesterday morning so we are all set to go.

    Also I talked to Pittsburgh today and we straightened out the whole phone number thing. I talked to the transplant coordinator and she said that they had the numbers the whole time that the other coordinator was not looking in the right place. She was in the process of calling our regular coordinator to find more contact numbers for us when I called her back.

    We will update sometime when we have time which, when we are at home is never!!! We are praying for a longer than 10 day stay at home this time!

    Take care,
    Jill

    P.S. I keep forgetting to include this in my updates but I wanted to thank all of the wondeful nurses, clerks, and aides on 3Csouth. You guys have grown to be our extended family. We thought Ally's quality of care could never be as good as what it always was in the PICU but you guys definitley rank just as high on our list. You are all awesome and I can't begin to explain the relief I feel knowing Ally is always in such loving and capable hands! Thank you.

    Comments:
    PTC Aktion Club:  So glad to hear Ally will be home again and that she is doing well. Our thoughts and prayers as always.
    Pastor & Kathy Pearson:  Hurray! We rejoice at the good news. Thanks be to God. And thanks to Ally for letting me play with her in ChildLife. Pastor and Kathy
    kelli willoughby:  I have been keeping up with Ally for some time now...I pray everyday for her and your family...my daughter, sara, was a liver transplant patient there, so I know, too, how wonderful the staff is on the floor and in PICU...there were days I needed them for support and they provided for both sara and I...Rachel G-Smith for one...and many others...also in the BMT unit as well...I pray God will answer your prayers and Ally will be healed...God Speed
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  • Tue, May 29, 2007 5:08 PM

    Well we had a few nice days at home the past week and a half. Unfortunately, as of now Ally is headed back to duPont and is being admitted for high fevers. All of her liver numbers are elevated, and frankly she looks awful. Put it this way, she is a nice shade of yellow/green! Means only one thing, liver issues!

    Not sure what the plan is for the rest of the week(s) ahead, but we need to see if Ally can still make the trip to Boston to be evaluated.

    We found out today that the organs that were available yesterday in Pittsburgh, went to no one! Turns out the organs had poor blood flow. So I'm guessing we are now back in the number 2 spot on the waiting list. Please continue to keep Ally in your prayers as she fights off these infections. Thanks!

    Comments:
    Audrey:  Hi Ally! I will be in Pittsburg next month and I am hoping to spend a day visiting you. You are always in my prayers. Lots of hugs!
    Jen Harmer:  I am sorry to hear that Ally had to go back to Dupont, but so glad that you all had such a nice weekend. I will keep you all in my thoughts and prayers.
    Christina Hopkins:  We will keep you all in our hearts and prayers.
    We love you all,
    Christina and family
    aunt shell and uncle george:  WE LOVE YOU AND YOU'RE ALWAYS IN OUR THOUGHTS AND PRAYERS.AUNT SHELL AND UNCLE GEORGE
    Pastor & Kathy Pearson:  Jill & Shane,
    The roller coaster goes up and down for your family. We pray that God would grant Ally healing from the fever and the opportunity for the life giving transplant. We pray for you as parents, for Ashley as the big sister, and all your family for strength and courage. We pray for the families that will suffer loss when organs become available for transplant. We entrust all this into God's care. Pastor and Kathy Pearson
    Vinnie Miller, Orl.FL:  My heart goes out to all of you in the ups & downs of Ally's care. I know how hard it is to remain positive, but pray that God's perfect timing is done, & that you feel His arms of love surrounding you as your ordeal continues.
    uni-brower:  many prayers are being said-been thinking of all of you alot
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  • Mon, May 28, 2007 4:39 PM

    Today at 2p.m transplant called from Pittsburgh to say they were looking for us because they had Ally's organs available!!

    We were excited and scared, but after talking with them they said they had tried calling our cell phones but got no answer. The reason why they got no answer was because they were calling our old cell numbers from 12 months ago! Why? Good question, especially since we had given our cell numbers again to Pittsburgh this past Friday!

    Long story short, transplant first called another child for transplant and got no answer, so then they called us, no answer (wrong numbers) then the other child's parents got the message and accepted the organs, leaving us with alot of questions!

    I guess the good news is now, we should be first on the list!!! Talk about getting your heart rate up this afternoon. We never really stressed, its just that this afternoon left you with alot of mixed emotions. We want this transplant to happen, and it needs to happen, but its a scary place to be heading with no warning. So today is our sign to get ready!!! We're next!!!

    Please pray for the child who lost their life today, their family in making the right decision to donate life, and pray for the child who is now accepting those organs as I write to live a much healthier life thanks to the kindness of others! Continue to keep Ally in your prayers and that her turn happens real soon!!

    Comments:
    winky bergdoll:  Thank you, Jesus, for giving another child a chance. Thank you, donor family for giving another child a chance. Thank you, Jesus, for allowing Ally to make it to the top of the list.
    Please richly bless the donor family for giving life when their child went home to be with you. Keep Ally and her family strong.
    In Jesus Name,
    AMEN
    The Houcks:  Your in our prayers. Please let us know if you need anything.
    Lou & Cheryl Torres:  We pray the Ally's call comes very soon and you are blessed with the joy of Ally getting her transplant. God bless you all.
    Lou & Cheryl Torres:  Subsequent to the
    Sandy Maicher:  As always we will continue to keep all of you in our prayers. Always know that I am here for you if you need me.
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  • Sun, May 20, 2007 9:14 PM

    Nothing but good times this weekend to report. We had a great few days at home. You could tell we have been locked up for most of the year when you here all the things we were doing.

    Saturday, Ashley had her first dance recital! It was great to see her on stage doing what she enjoys most, dancing in circles! We are so proud of her and all she is able to handle as a four year old! To see her on stage with no fear was amazing!

    Also on Saturday, we decided to buy Ally a "big girl bed" and put Ashley and Ally in the same room. Not sure how this will work, because tonight is the first night, but without night nursing we need Ally upstairs with us. The last two nights Ally has not slept very well. She wakes up about every hour or so screaming. Getting her off her hospital stay hours of staying up all night will be tough, but hopefully within a week she can sleep through the night again.

    Sunday we went to a trout rodeo, and Ashley caught one fish. Missed a few others, but that was daddy's fault. Ashley did however help Daddy clean and gut the fish. That was a shocker!! Later Sunday afternoon we had cousin Luke's birthday party to attend. The girls had a great time playing on the moon bounce and just being out with other kids.

    Be sure to check out the new photos added from this weekend. We will update again with any changes to Ally. Continue to pray for Ally to stay healthy and home, and for all our friends at duPont!

    Comments:
    Jalena:  Who is ally just wondering and you go to my school don't you??
    Cris Matlack:  What a great update! I just pray it goes on and on until you get the call for transplant! Love and joy to all!
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  • Fri, May 18, 2007 6:15 PM

    Tonight will be another busy night for our family of packing. However this time it will be to come home. That's right...we will be coming home again with the hope we can stay home for a little while. We know our days at home will be minimal, but we can hope for a few.

    Ally is doing much better. She had a new central line placed in her chest late last evening. Since she has been fine for the last 24 hours, we are able to leave the hospital. Ally's poor wrists and feet are badly bruised from all the sticks from placing temporary lines, but other than that she looks to be ok for now.

    We talked again to transplant today about what is taking Georgetown so long to consult with us, and it seems that they are busy. My response...so are we, and our family is the one's with the burden of watching our child die! There's no excuse in the world of medicine for not even giving us a call back! We need to list a second time, and if we do not get a response soon, our next move is to Boston. Dealing with insurances and hospital politics is not much fun! All of this causes alot of frustration and stress when people don't understand the importance of time, and how little we have. Each day that goes by without a call from transplant, is one more day closer to losing Ally. We need to do everything in our power to ensure we did everything possible as parents to save Ally's life. I will not sit idle and wait any longer for someone to call me, its time to get things moving, and that is what we will do early next week.

    We will update again soon with any changes to Ally's health. Please continue to pray for our friends Gavin, John, and Kierra! Each of them need prayers of strength, guidance, and hope for a better tomorrow! Oh yeah, Ally could use some help from above also ;)

    Comments:
    Tracy Lambeth:  Wow - I am thrilled to know that you will all be able to be home, even if it is just for a couple of days. May you find some peace and relaxation while you are there.

    Keep fighting those insurance companies and make sure the hospitals DO call you back. If there is anything the rest of us can do - please post it on your site. We all want to help in any way we can. I will continue to keep you all in my prayers and will do the same for your friends Gavin, John and Kierra.

    God Bless,
    Tracy
    mandee:  hey baby girl, i'm sorry to hear about your poor cute little feet and wrists all bruised up, that's no fun. i hope you feel better and i'll be praying for you. i love you baby girl and say hi to ashley for me. hopefully aunt jeanne will bring me up to see you guys sometime! love you all
    Colleen B:  Jill - I have been following Ally's health since a pancake breakfaset over a year ago. You are the bravest woman and mother I know. In every posting you have made- the same with your husband - you show such grace and spirit. You are so spiritual and it is a blessing that I can pray for Ally and your family.I have two healthy children and your example has given me more strength and patience as a mother. I give my children an extra hug and kiss at night and pray for your children as well. I pray that you and your family keep strong!

    Colleen
    Gilbertsville
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  • Thu, May 17, 2007 10:46 AM

    Sorry for the delay in updating about Ally but it has been such a down kind of week.

    After a torture session on Monday afternoon Ally's line was finally removed. Ally has never before had a line removed without being sedated and after they way things went Monday probably won't be having one removed again without sedation. Her line had only been in about 6-7 weeks but it was stuck and they had to make a small incision to remove it. This of course came after the morning torture session of placing a peripheral IV. Ally is not an easy stick so this took two attempts. Needless to say it is not Thursday morning and Ally will shortly be getting yet another IV because the one placed early this morning has already failed. This makes four IVs in less than four days.

    Since having her line pulled Ally has had negative blood cultures which is fantastic. Unfortunatley she has still been having significant fevers. We are all very concerned by this because we have no cause for the fevers and this is exactly what she did two months ago when she became so sick. Her spirits have been good so I am holding on to that. On top of all of this Ashley had a stomach virus over the weekend and I was lucky enough to have it all day yesterday. Sometimes I think the big black cloud that follows us around is trying to consume us!

    Ally is supposed to go to the OR tomorrow for a new central line. The docs are a little hesitant about placing a new line while she is still having fevers but since they have tested her for everything and everything is negative they decided to go through with placing it. Ally really can't be without her line much longer becasue her peripheral access is so poor and she can not receive the amount of nutrition that she needs.

    No word yet from Georgetown, really you don't even want to get me started on that subject. Pittsburgh has been keeping pretty close tabs on Ally through transplant here at duPont.

    I have never really been able to pray for Ally to receive her organs because I know the loss that it means to someone else's family. So, I typically just pray that God helps Ally to be healthy. However, over the last few weeks I find myself often thinking about praying for Ally to receive her organs and then maybe my prayers for her to be healty could be answered.

    Jill

    Comments:
    Diane & Dan:  Jill, Shane, Ashley & Ally--we continue to keep you in our prayers. May God give you the strength to get through this difficult time and help Ally to get well and be her smiling self again. That black cloud will go away and brighter, happier days are ahead. May your faith pull you through.
    steph:  Jill, I am sorry things are so rough right now. As for
    Pastor Carl, Lois, Anne Wenzel:  What hardship you still have, and what courage, especially when hope is hard to hold on to. Sorry for your trials, but glad you can share and receive our prayers.

    JIll, your harship praying for Aly's transplant is so understandable, painful. Can I offer this: that God would no sooner take Ally just to make room for another child to have her hospital room. So I do not believe that our God of love and grace, mercifully would not find a person to slay for the sake of giving Ally her organs. However, when one is dying, what greater gift to give the donor's family than to have their loved one's organs not die, but have their life extended by giving an extended life to another of God's children. This is the love of God--that life not be taken, but given. I hope you can pray, and let God help you find healing of the awful and unavoidable feeling that your daughter will be the survivor when another has died.Prayers, love, even tears for you all, Pastor Carl, for Lois and Anne, and your family at St John's.
    Susan:  Jill - My thoughts are with you, Shane, Ashley, and Alley every day. I too have a 5 year old son with health issues (an immune disorder)although nothing close to what you have to deal with. I so understand your note today regarding the iv's as my son's veins are shot too. And yes your statement about the black cloud is all so true. But for whatever reason, which we will probably never know God has given us this challenge for a reason. Please know that my prayers continue for all of you.
    Pastor & Kathy Pearson:  Gracious Father in heaven, you know the anxiety that Ally's family suffers. Bring your calm and peace to them and your healing presence to Ally. Grant your protection for Ally as she receives the new central line. We pray that Ally would be a healthy child. We entrust all these things to your tender care for Jesus' sake. Amen.
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  • Mon, May 14, 2007 12:52 PM

    Just wanted everyone to know we won the airline tickets and share the letter below from the Gift of Life. Thanks again to everyone who contributed or participated in this year's event! The hope is that we can continue this annually, growing and setting our goals higher. Thanks again. Letter is below:

    Dear Shane:

    On behalf of Gift of Life Donor Program, thank you and your family/friends for raising over $24,000 for the Dash for Organ Donor Awareness. Your family is an inspiration to so many people and we thank you for your commitment to organ and tissue donation, especially during this hard time. Ally's story has touched so many lives and we wish nothing but the best for Ally and your family.

    It is no surprise that you are the top fundraiser for the Dash for Organ Donor Awareness and I want to personally congratulate you on a record breaking amount of money fundraised. I have never seen anything like this before in the history of the Dash. Congratulations and thank you for all of your hard work. I will be sending you a package next week with two airline tickets, complimentary of AirTran Airways, in which I hope you and your family will be able to use them to go somewhere special.

    This is a very small thank you for all you and your family have done. I just wanted to touch base and let you know to expect the tickets via UPS next week. It was a pleasure to meet you and your team at the Dash.

    Again, thank you and best wishes.

    Sincerely,

    Megan

    Comments:
    phil haddad:  congrats. you guys deserve to have some good luck for once
    winky bergdoll:  Thanks to Ally's site and her friend Vinnie Miller I stand corrected. I am elated that I CAN still be a donor. May many new donors be signed up. God bless Ally!
    Cris:  Congratulations! You really deserve the tickets for all your hard work! Great job! Next year I will donate directly to Shane instead of in our name, typically, I was too busy and I was not thinking it would be more beneficial to donate through him. Now if I can remember that until next year! And if you continue to get my family reunion emails you can let me know how many have RSVP'd and you're invited! Sorry about that, somehow I got your email on a sendout to all my cousins!!!!
    VinnieMiller:  This is in answer to Winky Bergdoll's comment about cancer survivors not being able to donate organs. I spoke with someone at The Living Bank, where I'm signed up, 1-800-528-2971 & was told that cancer survivors may donate after being cancer free 5 to 7 years depending on the type of cancer. I'm a breast cancer survivor of 18 yrs. as of 6/6/07, so just wanted to set the record straight. Thank you & may God continue to bless you & yours.
    Winky Bergdoll:  Great news for you! It is time for a treat for you. Great job by your supporters! They will be blessed for their giving. It was with great regret I received the news that cancer survivors cannot be donors. It broke my heart, but I now pray for many others to make the decision. Looks like many have. God Bless!!
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  • Sun, May 13, 2007 8:25 PM

    Mommy,

    Ashley said that I had to write a quick message to you to let you know how special you are to both of us. We are two of the luckiest little girls I know to have a Mommy like you!!! Your days are always difficult, filled with things many mothers will never understand. You continue to amaze all of us with your never ending love. I wish our day could of been spent outside the hospital playing and having fun, but somehow we always manage to make our days special just as long as we are together as a family!

    One day Mommy when you look back at Ashely and I and see what amazing things you accomplished raising both of us through such difficult times, you will finally relax and enjoy life and all that God has given our family!

    Without such a special Mommy like you, our times in the hospital would not be as fun, not only do you care for Ashley and I, but you always find time for others to help them cope with their troubled times as well when their in the hospital. Mommmy I hope your day was filled with joy knowing that we love you forever, not matter what tomorrow brings!!

    Happy Mothers day to Mommy and all the mom's reading this update.

    Love, Ally

    Comments:
    phil haddad:  Happy belated Mother's Day
    Mary and Maggie:  Dear Jill, Happy Mother's Day. You are a great and strong mother. I hope things get better for you soon.
    Katie:  Happy Mother's Day Jill!
    Steph:  Hey guys, very sweet journal update. I have been away for over a week so I was catching up. Glad to see Ally at least made it home for a day or so. Sorry she had an infections, but I can understand the thoughts on
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  • Fri, May 11, 2007 9:46 PM

    I know this may sound strange but thank God Ally has a line infection. Last night we got a positive read back from Ally's blood culture. Although blood infections used to make us nervous and definitely used to make Ally's docs nervous we are all feeling a little relief about this one. Since Christmas time Ally has been having these episodes of really high fevers but we never find a culprit and yet she has been a lot sicker with all of them than what she ever gets with a line infection. Why that is who knows but at least this time we know what we are treating however I won't be cheering to loudly until we see a negative culture otherwise I'll end up eating my words.

    Ally was of course started on IV antibiotics and today she received some blood. She has been very pleasant and playful during the day even while having fevers. She and Ashley have made a new friend on South so Ally has spent most of the day playing with her. Tomorrow I am heading home for a little to try to catch up on some things and to bring Ashley down. Hopefully Ally will get that negative culutre soon and stop having fevers. I am hoping we will get out of here early next week and than can finish up antibiotics at home.

    Hope everyone has a nice weekend and a wonderful mother's day.

    Jill

    Comments:
    stacy and brian stauffer:  Happy Mother's Day. You are all in our prayers.
    Wanda Galeotti:  Happy Mother's Day to you Jill. You and your beautiful family are always in our prayers.Our Lord is with you every step to make. Love and Hugs, Wanda Galeotti
    The Gladieux Family:  Jill, Happy Mother's Day to you! And blessings and prayers to all of you. Love from all of us. Lynn & Family
    Sandra DiCesare:  Hello Heintz Family, As always we are thinking and praying for you. We hope they can get Ally's infection under control, so you can come home. Jill, Happy Mother's Day!!!!! Love to all of you!!!
    Landis family:  Hang in there! Your family is covered in prayer! Happy Mother's Day! Rob, Stephanie, Taylor, and Cassidy Landis
    phil h:  I will continue to pray for you Alley. Happy Mother's Day Jill
    Sandy Maicher:  Thinking of you as always. I hope you are able to get out of there soon.
    Hugs to all of you.
    Dayle and Dave:  Happy Mother's Day
    Hang tough, we are all praying for you and know God has a reason for everything.
    Lov ya
    Dayle and Dave
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  • Thu, May 10, 2007 6:29 AM

    Ahhh, the torture continues....after two nights with not much sleep, unpacking everything from the hospital, Ally last night ran a fever. Guess what that means? You guessed right!! Back to the hospital we go this morning!

    Well if I were to look at the positives, I guess I could say instead of just 1 night in our home, this time we had 2. On the negative side...well that list could go on forever. I'm telling you, someone really likes to create challenges for our mental and physical well being through all this!

    We will update again later with what is going on with Ally.

    Comments:
    Carsa:  Oh Ally, I'm sorry to hear you have to go back to the hospital. Hopefully you won't have to stay too long. Get well soon!
    Audrey Eddinger:  Jill,Shane,Ashley & Ally I'm so sorry you had to go back to the hospital. Hope this will clear up quickly and you can go home again. My prayers and thoughts are with you.
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  • Wed, May 9, 2007 6:30 AM

    Ally came home yesterday!!! Now we will see how long it is until we have to return back. We're hoping to stay home for at least a week or two. I guess will see. As soon as Ally arrived home, the first thing she wanted to do was to play on her swing set. She had a blast!!

    As far as her health, Ally has been ok. Looking a bit yellowish/green, so that is some concern. Not sure if its her liver or her possibly needing some blood. I guess we will just wait to see how she is the next day or two.

    It is so nice to be home...we did not get much sleep last night, maybe 4 hours, because Ally has been waking up every hour wanting "mommy". I think its just a comfort thing she is going through, wanting to know someone is there watching over her. These last few months in the hospital Ally has grown more fearful, and is wanting family to be with her more. So the whole sleeping thing is going to have to be worked on over the next few days. On top of all that it looks like we may not have much nursing help at night...can't blame the nurses, they can't wait around for months on us, and not make a living. So for now we are going to tough out each night ourselves taking care of Ally. At this point we are not interested in having new nurses come into the house, and build yet again more relationships with new people, and hope that we can trust in them to care for Ally.

    Please continue to pray for Ally, and that her call from tansplant comes soon.

    Comments:
    Heather:  Dolly Kemp has been keeping me updated with your little girl, Ally.
    I am all for fund-raising and helping people when I can.
    I am very successful at raising money for great causes and have ran Bronze every year for the Phoenixvile Relay for Life.
    If you ever need a helping hand, please contact me.
    I am glad to hear your baby is home! We always need our
    Andrea:  Welcome home Ally! I hope you get to enjoy these nice days playing with Ashley. I'm sure she is very happy to have you home too! Have fun and behave!
    Pastor & Kathy Pearson:  Thanks be to God for a safe return home for Ally and all the family. May God watch over you all as you await the call for the transplant. Pastor & Kathy
    Lynne:  That is wonderful!! Praise God for the
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  • Sat, May 5, 2007 9:10 AM

    Ally is doing much better as the days pass along here at duPont. We are getting close to having the smiling and happy Ally back! Currently we are keeping a close eye on Ally's blood pressures, and if they can continue to stay in a normal range, we may be able to go home early this week.

    No word from Georgetown yet. The doctors at Georgetown have been reviewing Ally's information and health records this past week, and it should be only a matter of time before we make the trip. I think it is our insurance company that is holding up the process...don't ask me, it's always something to do with paperwork. These people don't care about the time needed to get on a transplant list, their more concerned about how they will get paid!

    I'm sure the call to go to Georgetown will be right after we unpack all our things from duPont at home, to only turn around and have to repack and go back south to Washington, D.C. That usually is how our world works. Someone always likes to make us work harder in a day then needed. I often wonder what a day would be like without so many challenges? When your days are filled from morning til night with always being on the go, and many of people around you wanting your attention, you sometimes forget what a normal day is like. Three plus years, with no end insight, creates a focus that is so driven to get through a day, that you really forget about yesterday. Time is going by so fast, yet so slow.

    Please pray for Ally, and all the sick children and families in the hospitals that deal everyday with such extreme challenges at watching their kids suffer. No parent should ever have these burdens to face, but if you are so lucky to do so, their is a reason God choose you and your family to walk this path. That I do believe!!

    On another note: If you have not noticed, we put some information on Ally's site to let you know about the upcoming Corvettes for Kids fundraiser. Many of you asked why we put some much effort into the Gift of Life event, when all that money was not even going towards Ally's Recovery Fund. Well, the answer to that is because it does support Ally, just in a less direct way.

    Corvettes for Kids in a local event held every year that sponsors one child/family in the community that is in need of help. For 2007, Ally will be that spokes child! All proceeds will go to helping Ally and our family with housing and travel expenses, either to Georgetown or Pittsburgh. Please let us know if you are willing to help us make this event the largest Corvettes for Kids show ever!! There are all types of ways you could help. If we put as much effort or more into the event as we did the Gift of Life, we should be able to reach our goal of a successful benefit!

    If you would like to help, please email us at aajsheintz@yahoo.com There are plenty of ways to help...selling t-shirts, asking local businesses to advertise or be a sponsor for the event, help with organizing games, donating items for the silent auction, volunteer if you like, any help is always welcomed!!

    We will update again soon with any changes to Ally's health, and or Georgetown news.

    Comments:
    winky bergdoll:  May God continue to bless Ally and her family as well as the other kids and their families at DuPont.
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