Ally Heintz

August 2007

  • Fri, Aug 31, 2007 9:58 PM

    As usual it has been a busy couple of days. Shane arrived late last night and my brother and his family, Ashley, and my parents all arrived this afternoon. It is great to see Josh and Kelly and the kids. Ashley was exhausted today but I think tomorrow she will enjoy showing Katie and Luke around Pittsburgh.

    Ally's last two days have been okay but not great. She has been up and down on her vent settings. Currently her vent settings are higher then what they were on Wednesday. She will have another scope done on Monday. The docs said there was no reason to do one today becaue they will be leaving her on the rejection regimen until Monday.

    Today Ally was awake for a while and was very excited when watching Barney on the DVD. She was mouthing the words and pointing with her finger. It was nice to see her so happy.

    I probably will not update until Sunday unless there is something to report.

    Jill

    Comments:
    Carol Yeager:  Thanks for the update and I hope you can enjoy your family being there with you GOD BLESS ALL OF YOU
    Barbara:  Have a great weekend and tell Shane I will call him on Tuesday. Kisses for Ally and hugs all around.
    Love
    Barbara
    The Bollingers:  Our prayers continue for Ally and your family. Enjoy the holiday weekend with your family. God Bless
    Pastor & Kathy Pearson:  Enjoy the weekend with your family and tell Ally we are praying for her.
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  • Wed, Aug 29, 2007 11:27 PM

    Today was an okay day for Ally. It was actually very uneventful so I guess that is good but it also meant no weaning from the vent. The plan this morning was to wean but then her noon and late afternoon blood gases were not so great so the docs kept her settings the same.

    Ally's biopsy from Tuesday clearly shows some rejection so her docs will be keeping her on the OKT3 till Monday. Another biopsy will be done on Friday but Dr. Kyle said it will probably be unchanged from the one that was done yesterday. Ally spent a lot of time sleeping today. I am thinking she doesn't feel that great because of the rejection. Although, I guess it could be from the open abdomen, or the broken down skin around her stoma, or the stitches that have been in for 5 weeks, or the amount of medications she is on or possible the breathing tube, NG tube, J tube, and two JP drains. Put it this way she has the right to feel however she wants to feel! She also had some low grade temps today which is probably from the rejection.

    On a good note Ally seemed less agitated today and was very happy to watch some movies on her DVD player. I got a chance to go to parents night at Ashley's new school. I even met another mom and got to talking with her for a while. She has a son starting school with Ashley and he and Ashley have the same birthday. She asked about getting the kids together for a play date sometime over the weekend or next week so that they both would know someone when they start school.

    I managed to fit the Pirates game into my busy schedule. Lynne was right when she told me they stink. It was a very boring game but Lynne, Amy and Jamie kept me entertained so it was a fun night. Thanks again Lynne.

    I am hoping Ally has a day of progress tomorrow and that she can do some weaning on her vent.

    Take care,
    Jill

    Comments:
    brenda and rod:  hey jill, keep the faith we think about you and ally all the time and pray she stays strong have a good peaceful weekend and labor day hope ashley likes her new school and friends.take care.
    Carol Yeager:  Prayers go out to you and your family,Strength and willpower also goes to your daughter,God willingly things will get better for her.MAY THE GOOD lord bless HER AND KEEP HER FROM ANYMORE DISCOMFORT.bless you all
    Robin - Angel_Wings:  Ally - You continue to be in my thoughts and prayers - sending you GREAT BIG ANGEL HUGS, SMILES AND RAINBOWS!!! Hope you feel better soon!

    Mom and Dad - You continue to be in my thoughts and prayers also!! Sorry, have to say this after they just had a four game sweep of the Mets - GO PHILLIES!!!!

    Ashley - You are in my thoughts and prayers also! Have fun with your new birthday friend - that's so cool - I have one of them also!
    Amber Rice:  I work with Kevin F., he shared your story and I have been praying ever since. God bless your family.
    The Bollingers:  We all keep our fingers crossed that the anti-rejection drugs will do their job and Ally will continue to heal. Always in our thoughts and prayers.
    Pastor & Kathy Pearson:  O God, we pray that the anti-rejection drugs will do their job and that Ally will continue to improve. We entrust her to your tender care. Amen.
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  • Wed, Aug 29, 2007 5:45 AM

    Another good day for Ally. She has been able to stay off of the dialysis circuit and has had good urine output. She looks good and is definitely back to her pre-transplant size. The docs were also able to do some more weaning on the vent and I am hoping she could be extubated by the end of the week.

    Unfortunately Ally's biopsy show more rejection so she is getting some stronger doses of therapy (OKT3). Dr. Kyle thinks this will take care of it so we will see. This med has the potential to cause very adverse reactions but Ally seemed to handle her first dose just fine (prior to giving it the premedicate with benadryl, tylenol, and methylprednisone). Ally had to have her scope repeated today and they actually opted for an endoscopy so they could get a better look. More biopsies were taken but they will look about the same as the biopsies taken yesterday considering the rejection therapy was just started this afternoon.

    I'll try to update sometime tomorrow. I am headed out to a Pirates game with Lynne and a couple of her friends so it should be a nice night. Prior to that I have to go to Ashley's school for parents night.

    Take care,
    Jill

    Comments:
    Pastor & Kathy Pearson:  O God, we give thanks for this good day and the progress that Ally has made. Continue to watch over her and all her family and grant your healing touch, for Jesus sake. Amen.
    Carol Yeager:  HURRAY FOR ALLY, I will keep praying that things only get better from this day on.You all deserve a break from all this and I know that there is most likely a long road to go yet but today we must all count our BLESSINGS as they are given to us.GOD BLESS and keep you all in GOD's hands
    Oscar S.:  Glad to hear that Ally is doing better!!! Hope you enjoyed the game; you certainly needed the break.
    winky bergdoll:  Thank you for taking the time to keep us up to date. I am also glad you are taking care of yourself and Ashley. I am praying for all 4 of you. God Bless!!
    The Bollingers:  Keep up the good work Ally. Our prayers continue for you. Have fun at the Pirates game and at Ashley's parent's night. God Bless
    phil h:  Glad to hear Ally's doing better. We are continuing to pray for Ally in 2nd gr Sunday School at St. John's
    Sandy Maicher:  Glad to hear that Ally has been doing better. Our prayers continue to be with all of you.
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  • Tue, Aug 28, 2007 11:04 PM

    Ally had another good day today. She did have to go back on the CVVH dialysis machine for another 12 hours but was taken back off again tonight. This was really not a set back it was more just that she was not quite ready to come off yesterday. She has had good urine output all day even while on the dialysis circuit.

    Ally also has been able to wean some more from the vent. She is now back down to a peep of 5 and her breath rate is at 14bpm. She had another scope down this morning so we should find out those results tomorrow. Her belly looks okay she has a fairly large area in the center of her abdomen that is open. The docs are using a wound matrix to help Ally form granulation tissue. I told her before she went to bed to think "pee" and "granulation tissue". I'll see if she listens!

    Ally was awake a lot today. I still don't know if this is a good or bad thing. She seems so withdrawn and really wants nothing to do with me so it is hard to see her like that. I guess Shane and I always worry that she will end up hating us for all that we have put her through, but then it is not like we had a choice. I just pray that someday she understands the decisions we have made for her.

    I got a chance to meet another mom today who has a child in the PICU. Her son had a multi-visceral transplant on August 4th. He has had a lot of set backs similar to Ally since having his transplant so we had a lot of things to talk about. She is also here alone this week so it was nice to have some one for company.

    I also had a chance to go visit a preschool/kindergarten program for Ashley. The program is run by Carnegie Mellon University and seems like a great program. I got a call back from them later in the day saying that they would be happy to have Ashley in their program. They are having a parents meeting Wednesday so I will attend that and then make my final decisions. The program is Mon-Thurs 8:30-2:30 so it takes up a big chunk of time for Ashley and will give me some alone time with Ally. Friday is a shorter day just 8:30-11:30 and usually involves a special activity. Hopefully she will love it and will make her feel more at home out here in Pbugh.

    Jill

    Comments:
    Steph:  Hey guys, just checkign in and letting you know we continue to say many prayers. DOnt worry Ally will not hate you. You have only made the best decisions for her. She is just
    Kristin:  I keep checking in on you guys and hoping for the best. Sending prayers your way for Ally and your family.
    Carol Yeager:  I am so glad to hear that your little girl if having good days and I hope they continue to be
    Dont think that she will ever hate you for doing the things that you are doing for her,I am sure that your love is stronger and that she also knows that
    A mother's love is stong enough to make you realize just how precious life can be to all of us.PLEASE dont ever feel that she would ever hate you,all you have been throughwith her I am sure that she senses that too.
    GOD BLESS and GOOD LUCK to you all.PRAYERS are allways there for you from all of us.
    KEEP THE FAITH
    Valerie Pursel:  Hi I just wanted to let you know thast you continue to be in my thoughts. I have been checking regularly to see how Ally is doing.. I am a platelet donor and it is nice to see who some of our platelets are going to.. I wish the best for you all..Sounds like Ally is making progress.. That is wonderful.. Like
    I said last time I know God has big plans for Ally.. God bless you all.
    Janine & Kurt Davidheiser:  This is encouraging news and so happy to hear that Ally's weaning off the vent. The school for Ashley sounds great and she will enjoy it and make some new friends. Ally won't hate you or Shane. She's probably withdrawn from all the meds and all that she's gone through w/the surgeries. she's such a fighter. hang in there Jill and don't forget to take care of yourself too.
    The Bollingers:  So glad to hear that Ally is having good days. Keep up the great work Ally. Ally won't hate you, you have given her a chance at life and she is a fighter. It may seem like it now that she is withdrawn but as she grows older, she will be more than thankful for all that you have done for her. I am sure Ashley will love the new school and meet new friends. Everything will work out. Our prayers continue for you all. God Bless.
    Pastor & Kathy Pearson:  It was so good to hear your voice on the phone yesterday. We will miss Ashley in Transitional, but it sounds like the program at Carnegie Mellon is excellent. Please know that our prayers continue. Pastor
    Barbara:  It's good to hear some better news. I am praying
    for strenght for all of you. You have always made the best decisions for Ally and she will always love you all..as everyone who knows you.
    I am working on a time to come up after Labor day so I will try to contact Shane annd see when is best. I miss you all and wish I were there to hold my Ally girl's hand, but know I am with you in spirit and thinking only positive thoughts and prayers. Love you all.
    Barbara
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  • Sun, Aug 26, 2007 10:56 PM

    Ally is holding her own in the pee department tongiht. The circuit for the CVVH dialysis machine needed to be changed and since Ally has been making urine the past two days the docs decided to see what she can do. So once again pray for pee.

    Ally was awake on and off today and answering yes and no questions for us. Her vent settings have been weaned over the last three days and she is taking some breaths on her own. Her stoma site has had some bleeding so she did receive some blood and platelets to help stop the bleeding. Dr. Mazerigos looked at her stoma and said it looked okay and tomorrow we will get another look at her abdomen.

    We had a nice visit from Dr. Rabb today. Dr. Rabb was one of Ally's main docs back at duPont and was in town for a wedding. It is always nice to see familiar faces. Ally even managed to pop her eyes open for a few seconds while he was visiting.

    Everyone else headed home this afternoon including Ashley. It was another tearful goodbye but she didn't seem quite as hysterical as the she did the previous weeks. I am planning to look at some schools tomorrow and Tuesday and then make a final decision about were she will be going. Next week when she starts school will be busy but it will be good for her to have the interaction with other children. I think seeing kids her own age is what she misses the most.

    Hope everyone is doing well and enjoys this last week of summer. I'll update sometime tomorrow.

    Jill

    Comments:
    Cindy Bohn:  Jill our prayers are with Ally and your family,we have Ally on the prayer chain at the First Church of the Brethren in Wyomissing. We're from Boyertown ,your in our hearts and prayers.
    Toni:  You don't know me, but I'm doing the pee dance and asking my friends to do the same. I am hoping the best for all of you, especially Ally. I am the sister to a Burns, White & Hickton employee. Toni
    Carol Yeager:  My PRAYERS go out to you and your family,My only hopes are that things keep going well for Ally,If anyone deserves it she does.GOD BLESS ALLWAYS.
    The Bollingers:  Way to go Ally, keep up the great work. Good Luck in finding a school for Ashley, I am sure things will fall into place. Our prayers continue for all of you.
    Pastor & Kathy Pearson:  Jill, We will dust off the pee-pee dance! We rejoice at the positive progress. Our prayers continue. Pastor and Kathy
    Jeanne:  Jill, you continue to totally amaze me. I am soooo touched that in the midst of everything that you are dealing with in life, that you could stop and think of someone else. Thank you for looking after Michael. You are truly a friend. I receive far more from you and your family than I can ever say that I have given you. You guys are incredible! I am very glad to hear that Ally is holding her own. She continues to amaze me and everyone at BMH!(though she has impressed us from day one!)Hold on and know that so many thoughts and prayers surround you and Ally and Shane and Ashley. I miss you guys and can't wait to see you all again. As always, anything at all, just ask! Love you much, Jeanne
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  • Sat, Aug 25, 2007 2:08 PM

    Another day of progress. Ally is still doing well on the circuit and they are pulling off about 25cc and hour. The docs are hesitant to push Ally further since she is doing well at this and slow and steady seems to work well for her. Since getting some of the fluid off and not being septic the docs have been able to decrease her vent settings. SInce she is being kept paralyzed (due to her open abdomen) they will probably not be able to decrease her settings too much more. The biggest problem we are facing right now is keeping Ally comfortable and sedated. The circuit pulls off a lot of her medication so everything has been increased to extremely high doses and some addtional meds have been added.

    I told Ally to keep being good girl and I think she is doing just that!

    Jill

    Comments:
    uni-brower:  good luck in finding a school--we are all doing the pee dance-little steps one at a time-love ya
    Nan Moyer:  My prayers continue to be with you. Nan Moyer
    Carol Yeager:  I am so glad that things are looking up and I hope to GOD that they keep looking up more and more each day The only hope we have is the belief in the man up above.I know that if he sees it in his work he will do what ever possible.We will keep you all in our prayers and hope for the best
    Sandra DiCesare:  Keep up the good work Ally!!!! We are happy to hear she is doing better. Our thoughts and prayers are with you always. Love to all of you.
    Oscar S.:  Such good news is a blessing for the family. Ally is such a fighter!
    phil h:  glad to hear she's doing better
    Pastor & Kathy Pearson:  It is great to hear your good news. All of St. John's holds Ally and all of you in our prayers.
    uni-brower:  keep fighting-we are behind you all the way-many prayers are being said love ya all
    The Bollingers:  Little steps, that is all it takes. Keep fighting Ally. Prayers are with all of you.
    Aunt Jeanne:  Yeah Ally! Keep fighting. Remember that we are going to watch Mickey when I come back to Pittsburgh. I was thrilled when you shook your head yes to movies and no to reading!I can't wait. Continued prayers for you and Mommy, Daddy and Ashley...
    Lynne:  Another day of answered prayers, thank you, Lord. Prayers continue...love, Lynne
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  • Fri, Aug 24, 2007 8:15 AM

    Quick update because I want to get back to the hospital (we can not access Ally's site there because it is blocked). Ally is doing so so. Her vent settings have remained the same for the past two days which is good. Unfortunately her urine had dropped off to pretty much nothing.

    Late yesterday afternoon Ally had a dialysis catheter place and was started on a CVVH dialysis circuit late last night. She did well transitioning to the circuit and when she had the dialysis catheter placed. When I saw how much Ally's urine had decreased I asked her docs about the circuit and they said they were planning to talk to me about it because they wanted to be very proactive and get things started before they got too bad.

    On a positive note her docs said her belly looked good. One of the infectious disease docs (thank you Dr. Green) was nice enough to look at Ashley's ears which were definitely infected. She has started on some Augmentin (which she spit out all over me last night). She is definitely feeling better this morning.

    We'll try to update sometime this afternoon.

    Jill

    Comments:
    Carol Yeager:  Thank you so much for taking the time out of your hectic schedule to keep all of those who are so concerned about the progress of your little girl.We all hope that things soon start to look up for her and your family.
    Keep the FAITH and GOD BLESS
    phil h:  I will continue to pray for your family, and so will the St. Johns 2nd gr Sunday school
    Pastor & Kathy Pearson:  We continue our prayers each day. May God continue to give you strength to be good caregivers.
    The Bollingers:  Keep fighting Ally, our prayers are with you. We are glad to hear that Ashley is feeling better as well. God Bless you all.
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  • Thu, Aug 23, 2007 1:08 AM

    Another quick update because it is after 1a.m. and I am beyond exhausted. But before I update I have a lot of people to thank. Thank you to Lynne for spending some time with Ashley so I could visit with Ally and also thank you Lynne for being my family and support system while I am out here in Pittsburgh, truly my words could never express how much your help has meant to me. Also thank you to my Uncle Wally (who was out here on some business). Having a familiar face at the hospital has helped to give me the strength I've needed these past few days. Finally a huge thank you to Jeanne and her family (especially Mandee) Jeanne you have been their for Ally since day one and without your guidance and support I would be lost.

    On to my Ally update. Ally now has an open abdomen again. The docs had to remove a portion of Ally's new bowel because it was so inflammed and they also had to remove some more of her colon. She has a new ostomy and her colon is no longer connected to her bowel (before her ostomy and bowel was done in a "Y" pattern so her colon had been connected to the small bowel). Her abdominal cavity was quite frankly a "mess". She was already full of adhesions and her abdomen was also full of intestinal fluid (basically stool).

    The docs will be keeping her paralyzed for the next couple of days. Her biopsy from Monday looked good (Thank God!) so they can hold off on doing a scope tomorrow. Her vent settings are fairly high and she is having pretty poor blood gases so I don't expect her settings to improve anytime soon. She is also very positive as far as her fluid goes and her urine output has dropped off considerably (better start that pee pee dance again). She has been maintaing her blood pressure (with the help of some hydrocortisone) and her hear rate has improved since yesterday. Infectious disease is very concerned because Ally has grown a very resistant bacteria from her abdomen so they will be following her closely.

    As usual if one thing wasn't enough. Mandee had to call me at the hospital tonight and ask me to come back to the apartment, Ashley was hysterical and I think I figured out why she has slept so restless the last couple of nights. Needless to say I am pretty sure she has an ear infection. I will have to add a doctor's visit to my list of things to do tomorrow.

    Please say prayers for both of my girls. Pray for Ally's kidney function and that her body to rid itself of this resistant infection. Also pray that her bowel can go on to function normally and be healthy. Pray for Ashley's patience and strength not to mention her hurting ear. Also pray for my sanity ( or maybe just some wine!)

    I'll update tomorrow when I get a chance. Ashley was up to close to midnight so I am sure I will have to bring her back for a nap and then maybe I will have a chance to update in the afternoon.

    Take care,
    Jill

    Comments:
    Karen:  You and your sweet family are on my mind. I'm checking on you and Ally daily, and hoping your days get brighter. You have friends that you don't even know, hoping and praying for Ally to pull through this. She's a fighter, and you are a pillar of strength. You're my Mother of the year (century). Ally knows you're there loving her no end. Someday soon you'll be able to rest knowing your sweet girls are safe. I'm wishing that it will be in the VERY near future. Keep all your positive energy for Ally, it's working. It's healing time. She's doing it.
    Sincerely, Karen Dougherty and family.
    Dale and Lori Heimbach:  Dear Shane and Jill , We stand in awe of your perserverance in all you have been enduring. We pray that God keeps you and the girls safe in the hollow of His hands til this storm passes on and it will. Keep in mind that body of belivers in Jesus Christ is lifting you up constantly before the Throne of Grace.
    Kristen McNamara:  Sean, Aaron, Josh and I are praying that God will continue to carry you all through this. Your strength and unfaltering faith is truly a blessing.
    Carol Yeager:  I pray for you and your girls every night, I also hope that things change for the better for all of your sakes.I hope that you keep up the good faith and dont give up'this is GOD'S way of testing your strength.
    stephanie:  still saying lots of prayers
    steph and nate
    Ken and Beck:  We will pray for strength and peace for you and all your loved ones.
    Carla Brodbeck:  I'm praying and dancing'!
    The Hannahoe's:  You are all always on our minds and in our prayers. You're strength and perserverence are amazing. Love to you all.
    The Bollingers:  Our prayers continue for your entire family for good health, strength and patience. Stay positive.
    The Davidheiser's:  Jill, as a Mom, you've had more than your share. I am amazed at your strength. We are praying for Ally and Ashley, that they can both heal. The boys are praying for them every day too. Keep your faith in the Doctors and God!
    Pastor & Kathy:  O Lord, we need your presence now. Grant Ally and Ashley your healing power. We pray that Ally's kidney function may improve and that Ashley may have patience with her infected ear. Grant a double measure of your strength for Jill and Shane. In Christs strong name. Amen.
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  • Wed, Aug 22, 2007 4:25 PM

    Just a quick update to let you all know that Ally has finally made it out of the OR. She was in for almost five hours. Her surgeon said he thinks everything went well as far as the surgery goes but Ally is having some problems with her vital signs. Thankfully Lynne is coming to stay with Ashley for a little and I can have a few hours at the hospital to help get Ally settled and talk to the docs. (Thank you Lynne!)

    I'll update later tonight with all the details.

    Jill

    Comments:
    Susan Bratcher:  Shane,
    Vent on....all you want and need to. We are here to listen and help. We pray for your family everyday to heal and be home again together. Kids are so amazing....Love Susan
    The Huff's:  We have you all constantly in our thoughts......
    Steph:  Jill, we are praying so hard for ally.
    steph and nate
    A friend:  Dear Jesus, Divine Physician and Healer of the sick, we turn to you in this time of illness. Our dearest comforter of the troubled, alleviate our worry and sorrow with your gentle love, and grant us the grace and strength to accept this burden. Dear God, we place our worries in your hands. We place our sick under your care and humbly ask that you restore your servant to health again. Above all, grant us the grace to acknowledge your will and know that whatever you do, you do for the love of us. Amen.
    pam:  Please lord watch over this little girl who has been through so much and has overcome so many odds. Keep her strong, and her family faithful. God Bless.
    The Bollingers:  You are in our thoughts and prayers...Thanks for all the updates, I am sure it isn't easy taking care of Ally and Ashley and updating the website all the time. God Bless
    Teresa:  Praying for you all.
    Sandy:  Prayers are with you.....hang in there.
    Landis family:  We continue to pray for you daily. Thanks for updating so we know how to best pray for your family. God's peace and healing be with you!
    John & Linda:  You are all in our thoughts and prayers
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  • Tue, Aug 21, 2007 8:31 PM

    I honestly don't know how much more bad news we can take in a week, but things are just getting worse for Ally!

    I talked with Jill tonight, and Ally will be heading back into the OR again for the second time this week because she is leaking stool into her abdominal area. The catheter that was placed yesterday is not working, so back in the surgeons will go to either repair the area in need between the small and large bowel, or possibly create yet another ostomy (colon), along with her lleostomy. How many bags does one girl need?

    I wish I could explain and have you understand just how difficult days like these are when nothing goes right. To watch Ally fight every day just to live....only to have all hell fall upon her when she makes the smallest amount of progress. I guess you could say my frustration level is at its greatest right now. All I want is for her to heal. If you were to see the wounds she has currently, the poor girl looks like she has gone through war and back again!

    I know I guess I should remind myself yet again to be positive, but for some reason after 3.5 years of telling myself to do so, you start losing the strength to keep a healthy mental status. Don't worry, we don't give up, failure has never played a role in my book, and as long as Ally continues, then so will we. Guess venting on the website may not be the best place, but hey I do have an audience, right? ;) Well, our lives have been an open book for everyone to read, so I guess I do have some right here. If you haven't noticed, I'm frustrated. Having to be on the other side of the state, not able to be with Jill, Ashley, and Ally also makes things that much more difficult. I should be able to do more, and can't.

    Enough rants, please pray extra hard for Ally tonight into tomorrow. Also, please pray for strength for Jill to handle both Ashley and Ally, while I am not there to help in Pittsburgh.

    P.S.
    Thank you to Maura G. and Densie T. from Vanguard for stopping by the hospital this past weekend to visit with Ally and us. In case everyone does not know, much of what we have accomplished so far with Ally could not have been done so gracefully, if not for the overwhelming care, support, flexibility, and friendship that all of my fellow crew at Vanguard have given to our family. Your support, continues to amaze both Jill and I, and I want to make it a point to thank you as much as possible!

    Shane

    Comments:
    phil h:  Shane, don't worry about the venting on the website I think if we were in your shoes we would vent too. Don't give up, and keep trusting in God
    uni-brower:  Let it out it's good to vent-we are all here to listen-We are praying xtra hard -take care and stay positive-love ya all
    Oscar S.:  Shane, vent your frustrations; many people are here to listen. We are praying for you, Ally, Jill and Ashley. May God direct better days for all of you, especially for the recovery of Ally.
    Joe McDonough:  Shane,
    You have EVERY reason to be frustrated! I know what you mean when you say
    Maragaret Ann (PICU RN):  I am praying for you and Ally and your family. I hope today is the day for some good news and progress. I hope Ally has a a peaceful and healing day today.
    Betsy Jaquith:  We continue to pray for Ally each day - May God be with all of you!!
    Johanna:  With all you and Ally have gone through, it's sometimes hard to imagine more valleys and hills. But you and Ally and your family are amazing people, and you have many, many people supporting and praying for all of you. Although it often doesn't make much sense, without both the good and the challenging it's hard to really appreciate the good when it's there. It can be hard to appreciate this when the going gets tough. I know you will take a deep breath, reorient, and with prayer and support make it through this time as you have with the multiple times before. As always, you are in my thoughts and prayers.
    Barbara:  I am still praying and have everyone I know praying too. The gang here at duPont is pulling for all of you. We know what a fighter Ally is and all of you too! Keep up your faith, even though it is frustrating. You are the best parents in the world and your whole family and friends are all behind you. I'm coming up as soon as I can.Love to you all.
    Barbara
    Carol Yeager:  I am so sorry to hear of all the letdowns that you are going through I hope that you can remind yourself every day that it of thr LORD's will that you are being tested to see just how much you can take
    Our prayers are allways with you and your family and especially with your little girl,such a fighter she must be
    I just cannot imagine where you get your strength to go on except to think that she will allways need you and also your faith and strngth to go on
    I allways feel that the LORD above knows what is best for all of us and he will make his decision when he sees it possible
    I am sure that he does not want any of his children to suffer and it is only that he is testing you to see just how strong you are and how strong you believe in him.
    ALL our prayers are with your family allways,GOD BLESS
    Heidi:  Dear Shane and Jill,
    as a mother I can only imagine the pain you and your family are going though. Just by the tone in your letter I can hear the hope you have for your daughter. I know she get's her fighting spirit from you and her dad which is a wonderful thing. You are strong and your family is strong. The church and I have been praying for little Ally. Know that you are not alone, many people are with you and are there to support you and to cry on, please do not take this weight on all by yourself. Please remember, I know it might not seem like it now but God is with your family and holding Ally each and every day. You are in my thoughts. Yours in Christ, Heidi Snyder

    Irene:  Dear Shane, Jill, Ashley & Alli,
    Just wanted to let you know that the prayer warriors in Australia are lifting each of you every day.
    Remember, Abba Father is in charge He is the supreme physician & will see you through. Alli will be a witness for Him that few will have ever seen before. Abundant Blessings strength peace and love to each of you.
    Andrea Kershaw:  None of us on this end have any idea what you and your family have gone through and continue to go through. We are here to listen and do our part praying for Ally and her wonderful family. Don't feel bad about
    Karen Koller:  I'm praying for Ally to heal and for strength for your family. Keep fighting Ally!
    Pastor & Kathy Pearson:  Heavenly Father, Send your peace to Shane, Jill and all the family who agonize for Ally. Let them put their trust in your healing presence. Grant healing each hour to Ally and use the skills of the medical team to bring strength to her. In Jesus' name. Amen.
    Diane:  Shane and Jill: Hang in there through this very difficult time. Ally is a strong-willed child and she gets her perseverance from you--you have much more strength and courage than you realize. God will see you through all of this. We'll keep the prayers going for you at our home & neighborhood.
    Carla:  Shane and Jill--I can't say I know how you feel, but I'm praying all the time for all of you. I know it's easy to say, but God will never give you more than you can handle. Know that you have thousands of people all over the world praying for you. Ally's quite a special little lady; God's hand is upon her. Keep the strength and the faith; God is in charge.
    Liz:  I'm a friend of the maichers and I just wanted to say that i am praying for ally as well, she's an adorable little girl and i hope she is able to make a quick recovery :)
    The Bollingers:  You have every reason to feel frustrated and to vent. Being far away from the ones that you love is hard. You have our continued prayers for Ally and your entire family. Ally is a fighter and will continue to fight. You are always in out thoughts. God Bless!
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  • Mon, Aug 20, 2007 9:54 PM

    Sorry for the delay in updating things have just been busy. Ally is doing okay. She spent about 3 hours in the OR last night and of course things turned out to be a little bit more involved then what the docs first thought.

    Ally had been having some bleeding from the bottom part of her incision since Thursday. By Friday the bleeding had stopped until yesterday late afternoon when the bleeding really picked up again. The bleeding appeared to be old blood and we thought it was probably a hematoma just under the skin. Unfortunately by last night her incision had opened up about a half of an inch and Ally's abdomen seemed to be getting bigger and was definitely very tender for her.

    During the trip to the OR the docs drained the hematoma and placed a drain in that area in case it fills up again. They also repaired an area around her ileostomy that had broken down and was separating. The surgeon then noticed that the area where the small bowel was connected to the colon was leaking but he decided it would be too damaging to repair this area by sutures and thought it best to place a catheter for the time being so that this could drain easily and not have fluid and stool collect in her abdomen.

    She will need to remain paralyzed for the next few days until things start to heal up some. The docs also took out the allograft that was covering Ally's abdomen and closed her completely. Unfotunately since she is paralyzed all of her vent settings have been increased along with her narcotics and sedation meds. The docs are using the paralytic that does not have to be metabolized by the kidneys or liver so that should help.

    On top of all of this Ally had a fever this afternoon and all of her cultures were repeated. She had a very high heart rate all day and we are not sure if this may be because she is septic, a little on the dry side, or just not sedated enough. She also had a scope and biopsies down of her bowel. The scope looked good but so did the scopes that were done last week. The biopsies will come back sometime tomorrow.

    I'll update again later tomorrow evening.

    Jill

    Comments:
    Marnie/Angel_Wings:  Dear Ones, May God BLESS little Ally and all of you, saying little prayers all the day long for you all...
    Robin - Angel_Wings:  You continue to be in my thoughts and prayers! Sending you GREAT BIG ANGEL hugs, smiles and rainbows!!
    Polly/Angel Wings:  PPraying for you today and everyday, sweet heart. May the Lord give you comfort, strength and healing.

    Sending you Angel Hugs, Praises and Prayers.

    andrea & jeremy horn:  our thoughts and prayers are with your family...
    Jukebox Friends of Ally:  We are all praying and constantly thinking about you and your whole family. Ally is so blessed to have you all and she is just a tremendously strong little girl. We all hope and pray for a quick recovery for this little angel who makes us all so lucky to know her.
    Nan Moyer:  Jill, Shane, family,

    You are all in my thoughts and prayers. Nan
    Sandy Maicher:  Our prayers will continue to be with all of you. Thank you for the updates. If you need anything, just call.
    mbh:  I hope today brings good news for you guys. Many people around me (who've you never even met)are praying for Ally and all of you.
    phil h:  Let's hope for the best, and tht Ally gets better soon
    Cheryl Hewlett:  Jill and Shane,
    I pray for you all daily. Just had a chance tonight to get caught up on Ally's last few months. What a road. I'll have the ladies at church put her prayers higher on the list and I'll light every candle I can find. Jill I hope you and Ashley feel better soon.
    Miss you guys. My thoughts and prayers are with you.
    Cheryl
    Pastor & Kathy Pearson:  Thnaks for keeping us updated. The prayers in our house and from St. John's continue. Let us know how we can best help.
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  • Mon, Aug 20, 2007 7:33 AM

    Yet another tough weekend. Ally has had her ups and downs this weekend, but last night at 1 a.m. put a nice finishing touch. I can tell you that when the phone rings at that time, you know its not good. It seems Ally's horizontal incision line has come apart at both ends, and she needs to go back to the OR this morning. The kid can never get a break, I really don't know why she has to be made to go through so much? As soon as we find out more on this we will let you know.

    As far as the rest of the weekend, both Ashley and I came down with some pretty nasty colds. I'm sure it's because we are so exhausted and were vulerable to getting sick. Just another thing to deal with I guess.

    Other Ally news, the cultures that were drawn the other day, all came back negative. As for the rejection, we will find out today after her scope test. Some good news, Ally has been doing some sprints on the vent, and is handling it well. If you would of asked me before 1 a.m. this morning, I would of told you I would think she would of been off the vent by end of week, but now that she is going back to the OR, that means more sedation meds being pumped into her body. As I said, she nevers gets a break, she always gets into a viscious cycle of things.

    Please keep Ally in your prayers, as she will have another tough day ahead of her. Thanks, Shane

    Comments:
    courtney:  i pray every night for Ally.. I hope everything go's good for her and yous... She is a tough little girl.. ♥ love Courtney
    stacy and brian stauffer:  Ally is such a tough little girl. We keep her and the entire family in our prayers.
    Joanne:  We are all thinking of her here in the NICU, and our prayers are with you all. She gets her strength from you and Shane. I have never known a more couragous family. God Bless.
    Stacey Cleaveland:  I'm one of Aunt Kelly's
    Kranick Family:  Shane and Jill: God bless Ally and all of you--stay strong and know that our prayers are with you.
    Cheryl Nagle:  Keep fighting Ally!!! You are loved and prayed for and we all keeping the promises of God right in front of us. God will see you all thru this.
    Carrie:  Ohh Ally, your strength amazes me! You have to endure so much. I am sorry to hear of the set back. I will be thinking and praying for you.
    Donna Hausman:  we're praying sooooooooo HARD for all of you... the Lord listens, it's hard to understand sometimes. Hope you have the BEST WEEK ever.Love, AUNT DONNA & NANA
    Karen Dougherty:  Hi, I'm thinking of you and your sweet Ally.
    I think of all of you so much and am sending positive
    thoughts and prayers your way. I hope we get to meet
    in person some day. Sincerely and with love, Karen,
    Gina (5), Reese (3) & Harry
    Pastor & Kathy Pearson:  Jill & Shane, You know that the set backs will come on this journey for Ally. We pray for God's strength for you as you face them and for Ally that she may be healed. Know that we all are waiting and watching with you.
    Johanna:  Praying for better things for all of you- every little positive helps towards the right direction. Shane, I can tell you're working on that one!
    The Meitzler Family:  Our prayers and thoughts are with you.
    Margaret Huber:  Jill and Shane,
    Thank you so much for sending out Ally's pics...it means the world to me to see her and helps me to pray for her more effectively. She looks wonderful for all that she has been through! Stay strong and keep trusting the Lord to be her ultimate Healer!! I'm praying for you everyday!
    Oscar S.:  Another bump in the road. We pray that those
    KElly:  So sorry to hear of little Ally's set back. As a parent, I cannot even imagine your heartache at hearing something like that. I'll continute to pray!
    Aunt Sherry & Uncle Wally:  Ally, you are such a fighter, just keep it up. You, Ashley, Mom and Dad are always in our prayers.
    Love all of you
    Ashley and Shane, hope you feel better fast.
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  • Sat, Aug 18, 2007 8:17 AM

    Ally has been having a mixed few days of good and bad. I'll start with trying to be positive...Ally continues to be much more awake and answering questions when asked, she enjoys listening to her music, and even had the chance to see some of High School Musical 2 last night!!

    Now for some things Ally could use your help with through prayer! Top of the list is Ally's new bowel is going through some rejection episodes, in fact it has gotten worse over the last few days. They increased her anti-rejection meds in the hopes that this will help. Ally also ran a really high fever yesterday morning, so a ton of different cultures have been run to see what that is about. On top of all of this, Ally is battling withdrawal from her medications. It's been hard to stand by her bedside lately and watch her have to fight so hard to live! I know we said this in the past, but everytime we as parents have to go through this with Ally, the more difficult it gets not being able to do anything to ease the pain and suffering. I guess that's why we turn to everyone here, through all your support, thoughts, and prayers, God hears and is listening to just how much Ally means to us. It also helps to know we continue to do all of this not on our own.

    Please pray for Ally, and that she can overcome this rejection episode! We will update again soon when we know more about the next set of results.

    Shane

    Comments:
    Kelly J, 3CSouth:  Jill and Shane,
    We continue to keep you and Ally in our prayers. She is a fighter and I can't wait to see her running around! We all all here for you.
    Jeanne:  Jill and Shane...I was just watching some of the old videos of the girls. Ally has such incredible strength and is bright light to everyone that knows her. I believe and pray that God will continue to heal her and bring her to good health. She is a very special child and has touched so many lives around her. While this journey is going to be very difficult at times (remember, this is Ally that we are talking about;}!)please know those around you all are here to hold you up and help you through. Please give both those beautiful girls a big hug and kiss from Aunt Jeanne!
    winky bergdoll:  My prayers continue for Ally and her family. Big sister, of course, but big time for Mom and Dad.
    Holly Cusumano:  Thinking of you every day. God bless you.
    Carol Yeager:  I pray that she will keep on getting better and that she will get stronger and be able to fight tto handle the med decreases
    God will be watching over her and he will be the only one that can tell if she will be able to handle this, you know thathe will do his almighty best to help her get well if that is what he sees in her future. Our PRAYERS are with her allways, we all just need to believe and trust OUR LORD above
    KEEP PRAYING AND BELIEVING,My husband and I send all our love and faith
    GOD BLESS
    The Yeager's
    Teri Hinckley:  God will bless you for submitting to Him and encouraging others to the same on Ally's behalf. Praise Him that He promises to answer!
    phil h:  Keep the faith and know that God is all knowing and loving and answers the prayers of his faithful children
    Priscilla, Angel_Wings:  I am praying for Ally every day and sending her (((Angel Hugs))) and butterfly kisses.
    steph:  Shane and Jill - We are praying really hard back home that she fights these rejection episodes and withdrawal and can get back to being your little girl. Hang inthere. Please email me if you need anything.
    steph and nate
    Pastor & Kathy Pearson:  O loving Lord, watch over Ally and help her body to accept the organs which have been transplanted. Use the skills of the doctors, nurses and staff to continue your miracle of healing. Be of comfort to Jill and Shane as they watch at Ally's bedside. We entrust it all into your care in the name of Christ. Amen.
    Sandy, Al & John Maicher:  Jill & Shane, Our thoughts and prayers continue to be with you. Ally is a tough little girl. We know how rough it is to watch your child go through things that you can not do anything to make better. We continue to believe that God has a plan for Ally...she is come so far. As you have told me many times....a few steps forward, one step backward...take one day at a time and know that you are not in this alone...you have so many people behind you. John asks about Ally everyday and wants to send a healing hug her way :) Tell Ally that John has matching sun glasses for her and him when he gets to see her again.
    Sandra DiCesare:  Jill& Shane, Our thoughts and prayers are with you. We pray for your strength as parents,We know how hard it can be to watch your child suffer. We wiil pray that Ally recovers from this rejection. Hugs and Love to you all!!!!!
    B.S. @ CFK:  A gospel song by the Easter's (They sing with the Gaither Gospel renunions) called put it in GODS hands (I know you have) has helped my family over a lot of hurdles I just thought if you hear the words it might lift you over this hump too. Know that you are on a lot of prayer lists and depend on HIM. There is no hold buttom on HIS knee-mail

    a friend at CFK














    Diane:  Jill & Shane, May God give you lots of strength and courage at this time, as Ally gets over this difficult hurdle. Keep remembering what a strong girl she is--she will pull through. Keep focusing on those good moments.
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  • Thu, Aug 16, 2007 7:59 AM

    Just a quick update to let you all know that Ally had another good day yesterday. The EMG test that was going to be done today was put on hold since Ally has been so active the past few days. Yesterday she even had to wear no-nos. Which means Ally was very busy checking out all her tubes and wires! I also got to read her some books and she got a chance to listen to some of her favorite music. I told her she could watch Mickey Mouse this morning so I gotta get going:)

    Jill

    Comments:
    uni-brower:  great news-keep up the good work-Tell Aunt Jeanne to give you a hug from all of us--Love ya
    Aunt Jeanne:  Who would ever have thought that having to wear no-no's was such an exciting thing! You go girl...I'm so thankful that our prayers are being heard. We will continue to pray for you, Mommy, Daddy and Ashley every moment of the day. We all can't wait to see you next week. I'll bring you a special book to read to you, OK? You are an amazing girl and have such an amazing family. We are blessed to be a part of your lives.
    Hugs and kisses to everyone...
    Oscar S.:  What a fighter; Ally is amazing. Prayers do work; the Lord does hear you!
    winky bergdoll:  What a joy to hear such good news. I up-dated the ladies at my Bible Study yesterday. I can't wait to give them even more good news Sunday.
    God Bless you all!
    Bernadette:  Every day when I check the website, I am so pleased to hear of Ally's progress.

    I have everyone I know praying for you -- people in CFK, the Corvette world, Muscle Car World, Street Rod world, my ofice, my family, my hair dresser . . . you are one strong family and you will ALL pull through.

    Bernadette (VP, CFK Board)
    MOPS friend:  So thankful to hear of so many answered prayers! Gosh, Ally, you are such a little fighter. And Ashley, you are SUCH a good big sister! God definitely has his hand over all of you . . .

    MOPS will be taking a collection in September to pay for an Easy Pass ;-) We know that will help. We love you all! Our thoughts and prayers are with you daily.
    AUNT SHELL & UNCLE GEORGE:  JILL,SHANE,ASHLEY&ALLY, We can't tell you how happy and relieved we are that things are going so well. We pray for all of you everyday. Love, Aunt Shell & Uncle George
    The Bollingers:  Great News. Keep up the hard work Ally. We are all praying for you.
    Rhonda Bealer:  Jill & Shane: I just wanted to let you know that I have been checking your website almost daily for the last couple of years, and we have all been praying for your family. I have never met any of you directly, but you are always in our thoughts. I first got to
    Debra E.:  Jill,Shane. Ashley & Ally; Our prayers continue to be with all of you, several times a day! Ally looks sooooo good! The fight in her seems to get stronger,which is unbelievable. We are looiking foward to seeing all of you soon. we are all going through Ally withdrawl..Love Always All of your nurses @ HPHC
    Noelle:  Jill & Shane...Happy Anniversary!! (belated of course!) Happy to hear that things are looking up. You can always find a bright side to anything! You guys have taught me not to sweat the little things, and to appreciate the time that I have with the kids. Thank you both for that.
    Pastor & Kathy Pearson:  Tell Ally that I want to come and read a book to her! We give thanks for the good news.
    nick slamon:  jill,

    thats good news i am glad no muscle biopsy or EMG is needed. deep breathing for everyone involved.

    nick
    Aunt Kel:  Wonderful news!!! Katie and Luke have been saying lots of extra prayers for you and they are definitely working. Have fun watching Mickey. Love you and miss you lots!
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  • Tue, Aug 14, 2007 10:57 PM

    Well yesterday might have been a mixed bag but today was a bag full of goodies!!! Ally had a wonderful day and I got what I was praying for, Ally was finally able to open her eyes:) I am so proud of her and all the hard work she has been doing to keep strong.

    The neurologist had been in and does have Ally scheduled for an EMG test to be done on Thursday. However when she was talking to me about this was when Ally decided to open her eyes and start moving all around. I think she was letting her know this test would not be necessary. The doc said that if things continue to improve over the next day or two then they probably not bother with the study.

    The critical care team was impressed with Ally's progress over the past two days. Her blood gases were good last night and today and she was weaned to a rate of 8bpm and she is taking the rest on her own. Since she is moving around so much she is requiring a lot of suctioning but she is tolerating it well. Earlier tonight she was even trying to assist with suctioning, and emptying her ostomy bag, and listening with the stethoscope, and pulling every tube in sight! It is good to have our Ally back:)

    Her feeds were started at 5cc an hour yesterday and then they were increased to 10cc an hour this morning. The plan is to increase by 5-10cc per day until we reach our goal (which would be about 50cc an hour). She had vomitted a little once today so they did stop her feeds for a little. She was also very agitated at the time and in need of some fentanyl (narcotics) plus she also needed to be suctioned. Since they have restarted her feeds she has been fine and is currently at 7cc an hour.

    Thank you to everyone who has been praying for Ally especially for the prayers to re-gain her strength, they are obviously working. I ask you to pray for Ally's strength so that she is able to come off the vent and will not need a trach, pray for her feeds to progress well, pray for no rejection of her new organs, and please remember to pray for her donor's family. Also thank you to St. Andrew's congregation her in Pittsburgh, for your prayers and support and a big thanks to Pastor Grill (both of you!).

    Hope tomorrow can be as wonderful as today was!
    Jill

    Comments:
    Pastor & Kathy:  What wonderful news! We rejoice. I am so glad Pastor Grill and her congregation has made contact with you. Our prayers continue.
    ANDREA MOYER:  Great news again! Way to go Ally! Keep those peepers open for Mommy! Keep up the good work!
    Hugs to all of you!
    uni-brower:  Great News--We all now what a fighter our Ally is-we are still praying for you all--Love ya
    Aunt Becky and Uncle Jim:  What teriffic news. Ally keep up the good work. Happy Anniversary Shane and Jill
    Johanna:  Great news!!!!! Way to go Ally and family!!!!
    Susan:  Way to go girl!!!!!!!!!!! You are such a little fighter. Shane and Jill what a blessing to see your little girls eyes again. My prayers continue everyday.
    Carol Yeager:  HURRAY FOR THE Family,I know you all must be so happy and releived that Ally is doing much better,I will pray that she continues to keep doing well and that you soon will have her home with all of your family.Keep the FAITH and allways know that the LORD is watching over all of you and especially ALLY
    The Brensingers:  Way to go Ally!!! You just knew that mommy couldn't wait another day to see those beautiful eyes. I was so happy reading this update - thank you again Jill & Shane for taking time out of your busy schedule to do these updates. Keep up the good work Ally, we will keep those prayers coming. Thank you God for Ally and the progress she is making.
    Love
    Jake, Stacey, Samantha & Sydney
    Sister Millicent:  We truly rejoice with you and give thanks to God for the wonderful news this morning. Be assured of our continuing prayers for all of you.
    Sue Hohl:  You are all truly amazing people! May God continue to be with you every step of this journey.
    Audrey Eddinger:  I was so happy to read the update today, sounds like the prayers are working. I hope Ally will continue to improve everyday. Ally keep up the good work. Soon Ashley will be able to play with her sister again.
    Kristin Hedgelon:  WOW! I was so happy to read this great news today. Keep up the good work Ally and family! Lots of prayers coming your way.
    Carla Brodbeck:  Stay strong, Ally! It's exciting how far you've come already! We're excited for all of you.
    The Bollingers:  Way to go Ally! Keep up the great work. What wonderful news. Our prayers and thoughts are with you and the donors family! God Bless
    Deb & Bob:  Jill and Shane, So very happy to hear of Ally's progress! Our thoughts and prayers are with you always. Hope Ashley is doing well too.
    Donna:  I was so happy to read this update. It appears Ally is a fighter and each time she continues to fight harder. I pray for your family everyday. It must be so hard on Ashley to see all of this and go hrough all of this with her family.
    I pray that this will be the last time your family has to go through this. I wish improvement every step of the way.
    Rob, Vicki and Reagen:  Awesome news! We are very happy for all of you.
    RVR
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  • Mon, Aug 13, 2007 10:52 PM

    Today was still a bit of a mixed bag but I like to think that there was more good than bad. The most exciting news came tonight when Dr. Kyle stopped by and put Ally's order in to begin feeds!!! I was beginning to think everyone forgot about the feeds and that she would begin tomorrow. Of course I should have known better I don't think the transplant docs ever stop working here so I don't know why I was so surprised to see him tonight around 9:00.

    A neurologist came to see Ally today and was pleasantly surprised to see Ally answering "yes" and "no" questions for us by nodding her head appropriately. She did not have her eyes open for us at all but did manage to wiggle her toes and move her finges. She has still not been able to move her extremities and has not opened her eyes. The neurologist said that upon hearing about Ally's condition (extremely high blood pressures, low platelet count, starting with renal failure, long exposure to a paralytic and high doses of steroids and immnuosuppression drugs and lack of movement for days) she was concerned for her neurological status. She was extremely pleased (as was I, not to mentioned relieved) to see Ally still seemed to be cognitivly intact. In closing the neurologist mentioned the EMG test that would help us to determine if Ally is suffering from critical care myopathy. She said she would talk to me more about this tomorrow after she assessed Ally again and talked things over with the critical care team.

    Later in the day the docs made some changes in Ally's vent. Actually her therapist was playing around to see what she could do. She even turned off her rate and low and behold Ally began to take breaths on her own. They obviously weren't fantastic breaths but she was still able to do some work. Her rate was turned back on but her settings were changed some. When I left her tongiht she was still taking some breaths on her own. No mention of a trache was made today but I think Shane and I both realize that if Ally is suffering from critical care myopathy she will have a long recovery ahead of her and trache would then be in her best interest. As Shane said we will cross that bridge when we get to it.

    So like I said I thought the day was filled with more good than bad. I did get to spend a lot of time talking with Ally even if it was just "yes" and "no" responses I was still ecstatic to interact with her. She made the neurologist laugh because she was asking Ally to wiggle her toes and Ally kept shaking her head "no". So then she asked Ally if she wanted them to stop and of course she shook her head "yes'. Thankfully during the time I spent talking to her today she did not become upset at all. When the neurologist first came by she would not answer any questions. When I asked her if she was scared she nodded "yes" and I tried to reassure her that it was okay and then she began to answer their questions. At another point she began to get all red in her face and was moving her tongue and drooling. Knowing how much Ally likes to talk I asked her if she was trying to talk and she nodded yes. Explaining what is going on is so difficult and all I can think is how will I explain to her that she has to have a trache again?

    Oh well tomorrow is another day and I am praying for eye contact from Ally. Thanks again to everyone who helped at Corvettes for Kids and to all the people who came out to support our family. After three and a half years we are still in awe by all the wonderful people we have met along this journey.

    Jill

    Shane it is just now a half hour shy of our 8th wedding anniversary. I am so glad I have your love and support and would be lost without you (even when you are over 300 miles away). I love you.

    Comments:
    stephanie:  Jill and Shane, Just wanted to let you know you are in my thoughts and prayers. Hang in there, you know there will ups and downs. I will pray for many more ups than downs.
    Stephanie www.caringbridge.org/visit/stephanie6
    ANDREA MOYER:  HAPPY ANNIVERSARY! If you guys can make it through the last 3 1/2 years, you can make it through anything! I miss you guys! Here's hoping for some of that
    Christina Hopkins:  Happy Anniversary Shane and Jill! We are still praying for you guys and especially Ally!!
    Love you all and God Bless!
    The Hopkins Family
    Pastor & Kathy Pearson:  What a wonderful update. We are delighted to hear of the progress. Happy Anniversary! 8 years--you are just newlyweds. We hold you in our prayers as always.
    Bonnie Kooker:  I've been following Ally's journey for a couple years now. My heart and prayers go out to all of you. I'll keep praying that she gets stronger every day.
    Keri:  Happy Anniversary!! Glad to hear the good news and loved seeing little Ally girl's updated pictures. Thanks for posting them.
    Oscar S.:  [don't know what happened]...on
    Oscar S.:  Your news is so encouraging; it is good to read about Alley's responses. This year was my 8th wedding anniversary, which was celebrated on
    winky bergdoll:  Thank you, Jesus for continued anwered prayers. I put Ally on the prayer request list at our Ladies Bible Study. They will be praising the Lord for her good news thus far. I know there is more to come!
    Sandra DiCesare:  Jill and Shane, Happy Anniversary!!!!! So happy to hear they started Allys feeds. She is a true fighter and will get get through whatever comes her way. Not a day goes by that we are not thinking of you and praying for Ally.
    Teri & Grace:  Jill & Ashley, It was great meeting you this weekend. Grace loved playing with Ashley! Lynne will send you some pix. I hope your anniversary day is very special. We are praying for you all daily. Thanks for the updates so we can be praying specifically.
    Heather:  Happy Anniversary! Ally, we love you and keep fighting. Jill or Shane if you need anything please call. Love, Heather, Kevin, Danielle and Taylor
    Ken and Becki:  Eight years...In some ways it seems like less than that but in some ways it feels like ages ago. Happy Anniversary, Shane and Jill. So glad to hear Ally is responding and moving. That's precious. You guys are doing a great job. We'll keep praying.
    The Brensingers:  Happy Anniversary Jill & Shane!! That's is great to hear about the feeds - we will be praying for that to go well and that you get to see those beautiful eyes!! Stay strong.
    Lots of Love & Prayers:)
    Jake, Stacey, Samantha & Sydney Brensinger
    The Davidheiser's:  Happy Anniversary to you and Shane. I'm sorry you all aren't together for such a special day. It was great to hear that Ally was interacting with you somewhat. You are always in our prayers and her Sunday School friends are making something for her this weekend. We'll get it to you somehow. Tell Ally we miss her and STAY STRONG!
    Sandy Maicher:  Happy Anniversary. I'm glad to hear that they are going to start Ally's feeds...what a milestone. One step at a time. Hugs to all of you.
    phil:  Glad to hear things went well today, and let's hope for a lot more.

    Congrats to on your wedding anniversary I wish you two nothing but the best
    The Bollingers:  It is good to hear Ally is responding with nods. You can tell Ally is fighting hard, even without the eye contact you are still able to communicate with her, that is great! Keep up the great work Ally! Always in our thoughts and prayers.
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  • Sun, Aug 12, 2007 9:15 PM

    Sorry for the delay. We had a very busy weekend. We finally settled into our apartment Friday and Ally had an stable day. She opened her eyes once, and even responded to a few yes, no questions by nodding her head.

    We spent much of our Saturday with Ally, and then finishing our last few apartment leasing requirements. Ally on Saturday however, did not have as good of a day, as we would have liked. She did have a CT scan of her abdomen, and her bowel is doing great, and we may even start feeds tomorrow. That's the good news, now for the bumps in our road. You should of known these bumps were coming, there's never been an easy road for us, that is for sure.

    Ally has been on the vent now two weeks, without much movement. Much of this is due to all of her sedation medications. We cut some last Thursday in half, and cut today, that amount in half again. The doctors feel like something neurologically could be causing her to be weak, and unable to fight the sedation. Bascially, she is not taking breaths on her own, and is too weak to do so, right now. There is talk about doing some muscle tests, which stick needles into her muscles to test for specific conditions. These tests are very painful, and JIll and I will need to make a decision on whether or not to do this in the next day.

    Please pray that Ally's sedation meds that have been cut in half, will now allow her to find the strength to move and open her eyes, and maybe even take some breaths on her own.

    If we do not get her off the vent soon, we may need to have a trache put back in until she is strong enough to breathe on her own. I know that sounds bad, and is disappointing to think about having the trache back, but if we need to take one step back to take two steps forward, then we will do so. We need Ally to make progress so that she can heal comfortably.

    Enough trache talk, if it happens, we will cross that bridge when we get there.

    As for the Kids for Corvette show....it was a huge success. Thank you to everyone who contributed time to helping with the event, and also everyone who found time to join us, to help Ally and our family with all of our extra expenses! The day was long, I left Pittsburgh this morning at 5 a.m. to make it to the event and to meet and greet as many of you as I could. It was important for Jill and I to ensure one of us could be there to help with any additional needs for the event. Ashley had a great time face painting, and awarding a trophy to her favorite corvette.

    All in all, it has been a very busy couple of days, and we will work on now trying to get Ally strong, so that we do not hit anymore bumps along the way. Fasten your seatbelts...the ride is just begun ;)

    Shane

    Comments:
    Johanna Ray:  I've been out of town for 2 weeks,and find you and Ally have been very busy in my absence! Now I know why I've been praying for all of you while on vacation! Hopefully all will go as well as possible with this new chapter of your adventure! Take care, Johanna
    Nan Moyer:  My prayers are with you. Nan
    phil h:  Sorry to hear that Ally didn't have a good day on Saturday, and let's hope things get better soon
    Diane & Dan:  We continue to pray for Ally to get stronger every hour and take breaths on her own. She is certainly a fighter and has overcome many hurdles. Take care, get your rest and may each day get better.
    Pastor & Kathy Pearson:  We pray for Ally that she can fight off the sedation and for all as you wait and watch. You have made good decisions on Ally's care and I know that will continue. God will walk with you with these bumps along the road to healing. Pastor & Kathy
    The Bollingers:  Sorry to hear Ally didn't have a very good day on Saturday. As you say, there are going to be bumps in the road every now and then. I am sure you will make the right decision for Ally. Our prayers are continuing for all of you. God Bless
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  • Thu, Aug 9, 2007 11:54 PM

    Another good and stable day for Ally which was a good thing because Mommy (and Daddy too) had a chaotic day. I know Shane said the weather was bad at home but around 3:00 it was horrific in Pittsburgh. Not to mention at that exact time my mom Ashley and I were all outside under a tent a few blocks away from our hotel!

    The day started off with a parking ticket. No big deal but I can hardly remember were I have left my car at the end of the day (hospital or hotel) needless to say last night I parked on the street in front of the hotel. Around 9:30 this morning I remembered that I was parked on the street and needed to put money in the metor, to bad I received a ticket at 9:00.

    We finally arrived at the hospital around 10:30,after double parking in the parking garage (to say the hospital is short on parking is an understatement). Thankfully like I said things were good with Ally. Her vent settings were back up a little because she had some very poor blood gases during the night but her 8:00a.m. gas was good. Unfortunately Ally still has not been moving much and has not been awake at all since Tuesday morning. The docs decided to decrease her Fentanyl (narcotic) considerably which she tolerated well but, she was still not awake at all.

    Around 1:00 Ashley and I left the hospital to head over to the apartment so I could sign my lease agreement. Unfortunatley when we arrived in the leasing office no one was around. The memory portion of my brain, which had apparently stopped working, suddenly kicked in and I remembered hearing the leasing manager say "just make sure you call in the morning and let us know when you are coming so that one of us is in the office." Oh well, I figured I would just come over later after all it is only a five minute drive (2 miles to be exact).

    Back to Oakland and to meet my mom at the hospital. We thought it would be a good idea to walk and get some lunch and then Ashley and my mom could head back to the hotel. We ended up at Ashley's new favorite lunch spot Schenley Plaza. It is right in the middle of Pitt's campus and there is a huge tent to eat under and a carousel to ride on. Needless to say a horrible spot to be during a nightmare of a thunderstorm (mind you there was a funnel cloud spotted in the middle of downtown Pittsburgh)! Thankfully we made it out alive and without being struck by lightning.

    Now back at the hotel (and soaking wet) I talk to the leasing office and they say come right over to sign the papers if I can because, the furninture company will not set up for delivery with out a copy of a signed lease. Okay, no problem after all it is only 5 minutes away. An hour and a half later I arrive in the leasing office, that's right and hour and a half to go 2 MILES!!! Plus I still need to get back!

    Thankfully (I know I've used that word a lot) going back only took about 35 minutes. I did find myself in a pretty rough neighborhood during my shortcut back but fortunately (or thankfully) traffic was moving fast and there was a cop in front of me. Anyhow I finally arrived back at the hospital around 6:45 which left me with 15 minutes to see Ally before they kick us out for shift change.

    I did make it back to the hospital after the shift change and Ally was still not awake at all. She was recieving some blood because once again her hemoglobin was fairly low (5.4). Her platelets have also been low (23,000) but they have lowered there threshold for transfusion and will hold out unless they go below 20,000. Her white count has been coming down and her urine output remains good. Tomorrow she will have the CT scan and if all looks good possibly start some feeds. She had her scope done today, which looked good and we will get the biopsy results from that tomorrow.

    Shane and his mom finally made it out to Pittsburgh late tonight. They also had a horrible drive. They said it rained all but 10 minutes of their trip. Plus Shane lost his ticket for exiting the turnpike. I've decided we defintely need an easy pass and I don't mean for the turnpike but for life!!!

    Hope everyone enjoyed this comical update!
    Jill

    Comments:
    anonymous:  Jill,
    Please post the amount of your parting ticket and the cost of an Easy Pass and I think there are a few of us who can go together to pay for at least one, if not both, of those costs for you.
    With love from a MOPS friend
    Jodee Reid:  HI Jill and Family
    I hope you get that easy pass (for life. Hope to meet you soon. Hang in there.
    stephanie:  Hey guys, Glad ally is hanging in there. I hope the feeds go well and she starts coming out of
    Joanne:  Jill, with all the trials you are going through, you have a good attitude. Keep trusting the Lord to bring you through all these things! He is sovereign and is right by your side every step of the way!
    The Weiss':  So happy to hear Ally is doing well. Cody is in her Sunday School class and says a prayer for her at each meal and at bedtime - your whole family is in our thoughts and prayers.
    Susan:  Hey Jill - You always manage to keep your head up and be so optimistic!!! Not much else we can do with sick children. I too would like to know if you find the easy pass for life. So glad to hear all is going well with Ally. You are in our prayers every night as my son who has problems (nothing like Ally's) always asks about Ally and how she is doing.
    Donna:  Jill and Shane, It is good to hear that Ally is doing well. She, along with Ashley and both of you are in my thoughts and prayers. Ashley has been a joy to have in Sunday School the past two years and I look forward to seeing her as well as Ally's smiling face for a long time to come.
    Pastor & Kathy:  Jill--Hopefully all the tough stuff was cramed into one day. I have been working on the easy-pass for life for about 30 years now, but I haven't found one yet. I'll keep looking. You are in our prayers.
    Kristin Hedgelon:  Hi Heintz Family. Good to hear that Ally is hanging in there. I hope your life can settle a bit once you are in the apartment. Steph and I went to Univ. of Pitt, so we know you are in good hands! Sending prayers your way. The Hedgelons
    phil h:  glad to hear Ally is doing better. stay dry today
    The Bollingers:  Never a dull day for you....Glad to hear Ally is doing well, sorry to hear the weather didn't cooperate for Ashley, your mom and yourself. Hopefully the sun will be out tomorrow! Our prayers and thoughts are with you!
    Katie:  Jill, you could write a book - hang in there. Glad to hear Ally is stable and Ashley is adjusting. Hope to visit soon!
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  • Wed, Aug 8, 2007 4:42 PM

    Since Ashley will be back out here in Pittsburgh tonight I want her to have my full attention therefore I am updating early.

    I don't have all that much to report. Ally has had a good day. Her urine output has increased without having to give her extra diuretics. Both her heart rate and blood pressures have been decent today. The docs weaned her vent a little but cannot wean it much more for today because she has not been moving anymore than yesterday and that was only trace movements.

    Last night she lost her A-line so they had to place a new one and they gave her some paralytic to do this. Unfortunately, they gave her the same paralytic that she had before and that took so long to get out of her system. Needless to say she now has a large sign by her bed because the attending doc was not to happy that this paralytic was used on her again. She also had a critically low (4.3) hemoglobin last night and we are not exactly sure where all her blood went. She had received blood in the OR but obviously needed more. This was more than likely the reason she was so tachy yesterday evening.

    The plan for the next couple of days is to decrease her sedation meds and wean the vent. She will receive another scope on Friday and more biopsies of her bowel (this is standard stuff her biopsies from Monday looked good). The transplant docs also want to get a CT scan on Friday to check the bowel and stomach and if all looks good they will possibly start a small amount of feeds.

    So that is enough about Ally. I just want to say how wonderful everyone has been out here in Pittsburgh. The docs, nurses and staff at the hospital couldn't be any more compassionate and understanding then what they have been. Also we have had numerous people contact us, friends of friends or family of friends, and that has helped to make us feel so welcome. I especailly want to thank my dear friend Lynne and that is truly what I consider her to be my newest dear friend. Not only has she allowed me to stay with her the past few nights (although she didn't tell me how environmentally friendly she was NO AIR CONDITIONING:( She has been busy keeping me company and helped to keep my mind off of missing home and my family. The last week and a half would have been much more difficult to bear had it not been for her. Thank you Lynne.

    Jill

    Comments:
    Carol Yeager+Sterley:  I just read about your daughter and I want to send you both my prayers and love and I hope that everything is up hill for you from this day on
    All my hugs and love to your little girl and keep the faith
    GOD BLESS
    Oscar S.:  Your daily updates are so inspiring. Appears the good Lord is listening to all of the prayers for Alley!
    Sheri Waldman:  I'm so glad to hear that everything is going well with Ally. I'm glad that Lynne has been there for you too. I knew from the instant I heard you were going to Pittsburgh that you would be in good hands with her!!! You both are very special people, and I'm sure God intended for you guys to cross paths! We send our love and will continue to pray for all of you.
    Sheila Duffy:  Jill- Caileigh and I enjoyed meeting you and we keep praying for
    Sheila Duffy:  Jill- Caileigh and I enjoyed meeting you and we keep praying for
    Sandra DiCesare:  Jill, It was so nice to talk to you the other night. As always we keep all of you in our thoughts and prayers. I can not be there in person, but anytime you need to talk Iam here!!!!give both girls big hugs from us!!!!!
    The Bollingers:  Keeping everyone in our thoughts and prayers. It is good to hear the updates, thanks for taking the time out of your day to keep us all posted. Enjoy your time with Ashley.
    God Bless!!
    Leigh:  Hello All.... just checking in on my Ali-baba. All of us here at Dupont are praying for her and your family. Keep up the fight. Give Ally hugs and kisses for me... and sing her an Annie song for me...
    Pastor & Kathy Pearson:  Jill, Shane & Ashley, Thank you for the updates each day. I am sure all these days are long for you. We keep Ally, her family and all her nurses, doctors and staff in our prayers.
    Barbara:  I am posting your updates in the unit every day and I'm praying for continued good news. We miss you all here and evryone is praying too. I'll be up when Ally wakes up and can have company...that's a promise.
    Love to all
    Barbara
    Kacy Thomas:  I am glad to hear everything is going well. Your in my thoughts and prayers always!! Love Ya Kacy and Mackenzie.
    Kristen and Andy Duffy:  We're praying for you Jill, Shane, Ally and Ashley. Love, Andy and Kristen
    Lynne:  Jill, I feel the same way, and am honored to know and your family...I'm here to help any way I can. Enjoy the A/C tonight! :) Love, Lynne
    Lynne:  Jill, I feel the same way, and am honored to know and your family...I'm here to help any way I can. Enjoy the A/C tonight! :) Love, Lynne
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  • Tue, Aug 7, 2007 7:15 PM

    Another so-so kind of day for Ally. On the plus side I got to see her eyes this morning and she was moving quite a bit. She also had another stable trip to the OR. Her blood gases have remained good for the past 24hours so they weaned some of her vent settings once she was back from the OR.

    On the down side her white blood cell count is through the roof (indicator for infection) and her heart rate is right up there with that. Today her blood pressures were more normal to the low side and I am not sure if this is due to her blood pressure meds or because she is possibly getting sick.

    The docs were not able to close Ally's abdomen completely, which is a little bit of a bummer but at the same time I certainly wouldn't want them to force her closed. The docs placed an allograft material over the small opening so she will not need another trip to the OR her tissure should begin to granulate and close this opening. The docs are also using a wound vacuum to help close this a little faster. Ally has never had one of these before but I have seem them used on other patients.

    When I left the hospital tonight for the shift change Ally was starting to move again. The docs took my advie on using the other paralytic so hopefully tomorrow she will be little more awake and stable enough to wean some more vent settings.

    The plan for tonight was to try and get her heart rate under control, the docs are giving her some extra fluid for this. She is still on diuretics because quite frankly her kidneys aren't functioning without them. Basically all of this means she needs more fluid to bring up her central venous pressure but her kidneys can't handle the work of the extra fluid. In a nutshell this all means that we desperately need Ally's kidney function to start to improve.

    So I think that is enough info for now. We did get final approval today for our apartment so we can move in on Friday. Ashley and my mom are headed back out here to Pittsburgh tomorrow so I need to go rest up.

    Jill

    Comments:
    Carla Brodbeck:  You are always in my prayers. Next week I will be near Pittsburgh on 8/15 & 8/16. Let me know if you need anyone or anything transported to or from Pittsburgh. I'd be happy to help. My number is 610-970-9213.
    THE DUNN'S:  Our prayers continue to flow your way. I also wanted to share a poem with you that I wrote when my uncle received a new liver in January. The organ donation family is going to see that the giving family receives the poem. I changed it alittle to fit your situation. You can do whatever you choose with the poem.

    Thank you…..

    Such small words
    Without much meaning
    To say to someone’s family
    Who made the ultimate sacrifice?

    We are truly sorry for your family’s loss
    But he or she has made their final journey home

    And before you let them fly
    You in fact
    Gave them life

    See your gift
    Your precise gift
    Has given our daughter, sister, granddaughter
    A second chance at life

    A piece of your loved one still shines
    Still lives
    And still exists

    Your family
    No matter how far away
    Or how close
    Is part of my family

    Please have some peace in knowing that our families are connected
    Even if by small organs
    Your family is now
    And always will be a part of our lives and prayers

    Thank you!!

    8/8/07
    Krista Varady:  Everyone back home is praying so hard for your little fighter. You all have such a long road ahead of you and I think about you all and wish you well. Your strength and positive attitudes are admirable and your family is a reminder to appreciate life on a daily basis. God Bless.
    kelli:  Praying for your family...Praying for your fighter, Ally...God speed...
    Audrey Eddinger:  My prayers are with Ally and your entire family, glad things are getting better. Soon Ally will up on her feet and playing with Ashley.
    Sandy Maicher:  Our prayers are always with you. We will continue to pray for healing for Ally.
    The Bollingers:  We will continue to pray for Ally and your family.
    phil:  glad to hear that things are starting to get a little better, but I will continue to pray for you guys.
    Carla Brodbeck:  We're praying so hard for all of you. I'm happy to hear that things are falling into place with the apartment. We'll continue the pee pee dance for Ally, too!
    Lynne:  My
    Pastor & Kathy Pearson:  We continue our prayers for Ally and for all of you. Pastor & Kathy
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  • Mon, Aug 6, 2007 10:31 PM

    Sorry for the delay in updating but accessing Ally's website has been impossible. That being said a huge thanks to Lynne for letting me use her laptop and her home!

    Ally's last two days have been okay. For the most part she has been stable. Her blood pressures have been on the high side so she was restarted on some of her high blood pressure meds. On and off her heart rate has been elevated (150-170 bpm) and we aren't sure if this is due to pain, aggitation, or possibly some infection process.

    Ally had her first scope and biopsy done on her bowel today. I will find out the result of all of this tomorrow and then Ally will probably have another scope done later this week. She is also headed to the OR again tomorrow. The docs are hoping to close her abdomen but we will see. As for her vent settings they have been up and down. She will have a couple of good blood gases and the docs will change her vent settings but then she has a terrible blood gas and the settings go back to where they were or even worse.

    As for Ally's kidneys she is still making urine but her kidney function could improve greatly. So needless to say keep the prayers coming!

    Jill

    Comments:
    Chris Karver:  Ally is a stronger fighter than
    Phyllis (past DuPont Nurse):  Ally is in my thoughts and prayers, as always. My Sweet Adelines Chorus of 50+ women are also praying for her (and doing the Pee-pee dance!). You're such wonderful parents, hang in there!!
    Oscar S.:  My wife and I keep Alley and the rest of the family in our prayers.
    Palm Schwenkfelder Church:  Ally has been on my mind and in my prayers. God's hands is holding your little one and keeping her safe. We wish the best for Ally and our congregation has her in their hearts and prayers. Heidi Snyder, Palm Schwenkfelder Church
    Susan Bratcher:  Ally and your family has been on our daily prayer list. My husband received a kidney transplant from my sister and the beginning days were scary but they did improve. Ally is such a fighter. Tell her to keep the fight going.....
    phil h:  I will continue to keep your family in my prayers
    The Bollingers:  Ally, prayers are with you and your family. You are a tough little girl...stay strong. God Bless
    Becky Lee:  Ally- You have done a great job so far...my family & I definetly will keep praying for a smooth (boring) recovery for you...I think about you everyday!
    Miss Becky
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  • Sat, Aug 4, 2007 8:46 PM

    Another day with not much to report. It feels great to write that, trust me! I would take a boring life from this day on if I could.

    Ally was stable all day. When you talk with her, she tends to cry...by crying I mean tears start to pour from her eyes, she makes no sounds and can not move due to the sedation. It's so hard to see her this way, even though we have experienced it before. I can't imagine what it must be like to hear people speaking to you and not be able to communicate back.

    Our apartment search is over. It came down to two different ones, and the one we liked most, just didn't have enough room for us and family when visiting. The one we choose is great, and is in a very nice neighborhood. We are preparing to move in by the end of this week, so we will have plenty to keep us busy again this week.

    Ashley has been struggling this week learning to cope with the uprooting of our lives again. She's worried we are moving her forever. She missed home, and misses her sister very much. To be honest, she's flat our scared! It's so hard to balance this type of life, but with the help of others, I know we can do this once again.

    Please think about attending next Sunday's Corvette for Kids event. It's the best way you can show your support!

    Comments:
    Pastor & Kathy Pearson:  Ally, Ashley, Jill & Shane--We keep you in our prayers each day. We are thankful for the good reports. Pastor & Kathy
    Kristin Hedgelon:  Hang in there, Heintz Family! My family is praying for Ally's smooth recovery. We walked with Steph P. at the Gift of Life Walk on 4/22. Steph has spread the word to all of us to pray for Ally. You Go Girl!!
    Ellen K:  Shane and Jill: every day you and the girls are in our prayers--it's so good to hear that Ally is holding strong!
    The Bollingers:  Our thoughts and prayers are with you! It is good to hear that Ally is doing as well as can be expected. God Bless.
    Stephanie Landis:  We are thrilled to hear that Ally is doing so well. We will continue to pray for positive reports. Rob, Stephanie, Taylor, and Cassidy Landis
    The Willigmann's:  Ally,Jill,Shane & Ashley,
    You are in our thoughts and prayers. We can't amagine what your family is going though but we hung our kids alittle longer each day. I wish there was something I could say to send you some comfort, just know that your family is in our hearts.
    The Davidheiser's:  Ally, Mom, Dad, and Ashley,
    We are sending all our love and prayers to you. We say a prayer for you and your family every nite at dinner. Hope you can settle into your new home with ease. Moving is not the most fun. Your friends and teachers at Sunday School miss you too. Can't wait to see your smiling face again!! Love, Mike, Betty, Kyle and Zachary Stay Strong!!!
    Deanna Benner:  Ally, Jill, Shane, & Ashley,
    We miss you guys!! Everyone here in the PICU is praying for Ally and your family. Stay strong! We are all behind you!
    Love, Deanna and Colleen
    phil h:  Glad to hear things are going well, and that she is getting better. Hope things get better for Ashley too
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  • Fri, Aug 3, 2007 8:02 PM

    We had a very busy day today. It started off seeing our friend Beverly from duPont, who was at our hotel helping transport some tranplant kids from back home to a camp just South of Pittsburgh in West Virginia. The scene in the lobby was overwhelming to see all these few hundred kids that have had transplants, excited about a weekend with friends to enjoy camp activities. I explained to Ashley that these kids were just like Ally, they all were given a second chance at life. I can only hope that one day Ally can join everyone at camp also!

    A big thank you to Jessica and Beth back at duPont for the gifts from Child Life for both Ally and Ashley!! Too much of course, but brought many smiles to Ashley, and I'm sure Ally when she awakes!

    Jill and I spent half the day looking at apartments, we have a few to consider, and will make a decision sometime tomorrow. We met some great people today, that had some fanastic places and accomadations offered to us. It's going to be a tough choice to say the least.

    Besides our friends from duPont making a visit, we had another visitor, Don Razzano from Vanguard (My workplace and co-worker), stoped in at the hospital to see Ally and spend an hour with us visiting. His son was touring the university here, and when he saw how close Childrens was he knew he had to stop and see us. Visitors are always good, and always welcome!

    As far as how is Ally. Well, not much has changed. She was had some issues with her blood pressures, and is just wanting to be awake. I think it's the fight in her that just wants out, and every time she trys they knock her back down with sedation meds. It's in her best interest, but hard to watch her fighting to be awake.

    Not much else to write for now. It looks like the OR will happen on Tuesday to close the rest or her abdomen.

    Keep your thoughts and prayers going for Ally, it is truly working. I wish you all could see everyday at just how much fight she has to live!!!

    Shane

    Comments:
    Mary Ellen Grimley:  Just so happy to hear that Ally is progressing every day; please be sure that I talk to Annie about Ally and feel so confident that she will be fine in the near future!! We are praying for all of you; this is quite an ordeal for all of you and I can understand how upset Ashley is in this whole strange environment. Will keep you in our thughts and prayers and can't wait to hear all good news from you and Shane. Hang in there!!
    Shylah:  Keep up the good work Ally!!! I'm praying for you!!
    Sandra DiCesare:  We are thrilled at how well Ally is doing!!! We are keeping you all in our prayers. Good luck with the apartment hunting. Thinking of you always!!!!
    brenda and rod:  I'm sure the week has been long for you but just think its a whole week already so thats great ally is such a good fighter and we know she will keep improving everyday for she has a great purpose in life we are praying extra hard and her angels are watching over her let us know too if we can do anything to help.
    Oscar S.:  Have been reading the good news each day. Am sure Sister will update everyone tonight at the Saturday @ 6 service. Will continue to pray.
    phil:  glad to hear that things are continuing to go well. I will continue to keep you guys in my prayers
    Pastor & Kathy:  We rejoice at your good news! We keep you in our prayers. Pastor and Kathy Pearson
    Carla Brodbeck:  I'm so excited for Ally. Praise the Lord! We all keep praying, and it's wonderful to hear such great news.
    Sandy Maicher:  Glad to hear that everything is going well and thanks for the updates. I have so many people asking for all of you. Our prayers continue to be with all of you.
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  • Thu, Aug 2, 2007 10:39 PM

    Today was another good day for Ally. I got a good look at her belly this morning when the wound care nurse did her dressing change. It looks fantastic! She and I both agreed that they should have no problem closing Ally's abdomen next week when she heads to the OR again.

    Her vent settings were increased a little today do to some areas on her chest x-ray. Her paralyzing med is still off but Ally has not moved at all yet. On and off today she was a little aggitated when the nurses were messing with her but like I said in general it was a good day. Also thanks to all of you pee-pee dancers because Ally's urine output has been great. This of course is a huge relief we did not want to head back down the same road as a few months ago and have Ally back on a dialysis machine.

    Shane and I have begun our search for apartments. We are going to look at some tomorrow so we'll see. We went to a nice area for dinner tonight and they have some furnished apartment complexes there so we will also be looking at those. Ashley seems to be doing well the last couple of days and she is excited about going home for a little this weekend with her grandparents.

    Hopefully things will continue to move along at status quo. I told the attending doc in the ICU that I have been pleasantly bored!

    Jill

    Comments:
    Tina Eidle:  Hi Jill and Shane,
    My prayers have been with Ally and your family. I am happy to hear all your positive news. I was reading about your apartment hunt. A friend of mine used a program called Host for Homes while her granddaughter was at CHOP. Private families around large hospitals open their homes to families of sick children. There is no charge and she thinks it is offered through out PA. Her original contact was Marilyn Lakin from Boscov's East at 610-779-2000. She placed her in contact with a Mike from the Boscov family. She thinks CHOP may have information on this program as well. I'm sorry I do not have more information on the program, but hopefully someone will be able to get you more information.
    All My Prayers and Best Wishes,
    Tina
    winky bergdoll:  Thank you, Lord for further answered prayer.
    May Ally continue to improve daily. Our prayers are with you all!
    Alissa:  I'm glad to hear that things are going well and that you are pleasantly bored. We're thinking of you.
    stephanie:  Glad she is doing well. Soon she will be up and moving around... you are always in our thoughts and prayers. Good luck finding a place to stay. We know how hard that is and how expensive finding a home away from home
    Pastor & Kathy:  Jill & Shane,
    Thanks for the great news on Ally. We know that this is a very long journey and you are only at the beginning stages. We give thanks for every good day.

    A little prayer of thanks:
    Sandy Maicher:  Thanks for the update Jill. I'm glad that everything is going well for you. I hope that Ally's vent settings can come down soon....and I am extremely greatful that the pee-pee dance worked.
    Hugs to all of you.
    phil h:  glad to hear that things are gong well. Let's continue to hope for the best
    Carrie:  I am so happy to see that Ally is improving. Her strength amazes me! I will be praying for her continued progress every day. I miss her so much!
    Margaret Ann:  I am thankful that things are going well. One day at a time and one step forward everyday is an accomplishment. It's hard not being the ones to take care of Ally but it sounds like she is in great hands. Take care of each other and we'll continue to pray and look forward to Ally's homecoming. Love, Margaret Ann (duPont nurse)
    Barbara:  Glad to hear things are going well...we'll still keep praying for continued progress and anything you need just give us a call...you know our number. Love to you all and my Ally girl.
    Love
    Barbara
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  • Wed, Aug 1, 2007 12:11 PM

    Ally is out of the OR and things went well. The surgeon was able to reduce the mesh and open area of her abdomen by about 50%. She looks good and has been pretty stable.

    When Ally first returned back from the OR she seemed fairly awake (for all you nurses her pupils were like saucers). She received some additonal boluses of fentanyl and even some morphine on top. Fortunately she was not crying. I can honestly say that for a parent one of the most difficult things to see is your child crying when they really seem as if they are "sleeping".

    Her urine output has picked up a little but there is definitely still a lot of room for improvement! So keep saying those prayers and doing the pee-pee dance because it is working.

    Jill

    Comments:
    Dayle and Dave:  You are in our prayers and just want you to know how much we care about all of you. We will continue to pray for all of you. God Bless you and Grant you peace.
    Dayle and Dave:  We were so happy to see everyone at Corvettes for Kids. What a wonderful support team. This update is such a gift to all of us. Keep the faith, you are in our prayers daily.
    God Bless all of you!!!!!!!!!!!
    uni-brower:  We are all praying for you all--one day at a time prayers are being said at our church--
    donna hausman:  What an awesome answer to prayer.... keep your faith... if there is anything we can do, just ask !!!! Love Aunt Donna & Nana
    ToniHertzog: 
    I just learned of Ally's transplant and your family is in our prayers! I know Ally is a strong girl and will get through this! Hello to Ashley too!!
    Dr. Green's office:  Jill All of your co-workers and patients in Phoenixville are pulling for Ally and the whole family. So happy that everything is going well.
    We are getting good at the Pee Pee dance too.
    BOB SKINNER--CFK:  DO NOT WORRY--DO NOT FEAR
    WHERE 2 OR 3 ARE GATHERED
    HE IS ALWAYS NEAR
    WHEREVER YOU GO--WHATEVER YOU DO
    KNOW THIS FOR A FACT
    HE WILL NEVER LEAVE YOU
    SIMPLY REMEMBER HE IS ALWAYS THERE
    FOREVER BY YOUR SIDE--AS CLOSE AS A PRAYER
    Kristin at RMH:  I hope Ally continues to improve. It must be a help to have the grandparents there for Ashley. Two great things to do with kids is the Pittsburgh Children's Museum http://www.pittsburghkids.org/ (which may be where Ashley went earlier this week) and the Pittsburgh Zoo. At least she likes swimming in the hotel pool. I continue to keep your family in my thoughts.
    all the girls at phx hosp:  We are soooooo happy to hear that thing went well. The family is in our prayers and we are doing the pee-pee dance every chance we get.
    Pastor & Kathy Pearson:  Jill & Shane,
    We are relieved and thankful that the first closure went well. We hold you in our prayers and we will keep
    phil h:  hi Hientz family
    glad to hear things are going well and I will continue to pray for your family
    Barbara:  Still praying and thinking about you all, we all are...love to all and kisses for my Ally girl!
    Love
    Barbara
    The Dunn's:  May you all continue to heal and we will continue to keep you all in our prays. God Bless you all.
    winky bergdoll:  Glad to hear the output is increasing. I'll continue to pray for it to increase even more. As a descendant of American Indians I never heard of the Pee Pee dance, but I'll give it a try!
    God is with you!!
    Win:  Shane,
    Try looking into Family House. It's similar to the Ronald McDonald House. My friend lives in Pittsburgh - he's looking into places to stay and other ways to save on expenses. His wife is also a doctor and is looking into this well. I'll have more information later . . .
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