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

< > October 2007

Tue, Oct 30, 2007 9:44 PM
Well so much for coming home this week and at this point next week is not looking so good either. Ally spiked yet another temp on Sunday and this time she grew bacteria in her blood, urine, and trache cultures. Her blood cultures have been positive for two days now so the docs are getting a little concerned. Thankfully Ally has not been acting sick and has not had a temp since Sunday morning.

Ally has also been having an increase in stoma output. She was rescoped last Thursday and then again this Monday and both biopsies looked good. Transplant is thinking that it is probably related to her Milk allergy and have decided to switch her formula. Hopefully we will see an improvement in her output over the next few days.

Both of the girls are excited for Halloween. The had some trick or treaters tonight via our webcam. The girls got to see most of their cousins in their costumes. The girls also got to talk to their Daddy and both sets of their grandparents with the web cam. Ally got to do some fun Halloween activites this week thanks to her stoma nurse, Patty. She also had a girly day for Ally yesterday complete with feather boas, nail polish, lip gloss, eye shadow, hand cream, glitter spray, a new princess nightgown with a magic wand :) Ashley is going to trick or treat in the evening with some kids from her class. They do not dress up at school but are having pajama day instead.

I have been busy having training this week on Ally's homecare equipment. I am starting to feel a little panicked about having Ally as an outpatient, or maybe just a little overwhelmed. Thankfully I did have a wonderful relaxing weekend with some of my girlfriends from home. I also went out last week with Lynne and some of her friends for my birthday. We went to a Hibachi Japanesse Steakhouse and we had a really great time.

Hopefully I will get some great pictures of the girls tomorrow in their costumes and then we will add them to the site soon.

Happy Halloween!
Jill

Comments:
winky bergdoll: Glad to see some happy things mixed in with the not so good news. Continuing to pray for Ally.
God bless you all!

Carol Yeager: I was beginning to wonder what happened that I havent gotten anything from you in the past few days but I was so relieved to see your letter this morning when I checked my mail,I only hope that things are going to get better from here on in
May GOD be with you allways and God Bless you all.HAPPY HALLOWEEN TO ALL

phil h: Hang in there things will get better, and you guys will be back in Boyertown before you know it. Keep thinking postitive

Pastor & Kathy: O God, watch over Ally and heal the infection that is in her body. Give her Mom strength as she prepares for being an outpatient. Be with Dad who watches from so far away. Give Ashley all the love she needs to be a good 'big sister' and watch over all the family for Jesus' skae. Amen.

The Bollingers: Hang in there! A small step back and a giant leap forward...Can't wait to see the halloween pictures. Keep your chin up, our thoughts and prayers continue for all of you. God Bless!

Sandy Maicher: Hang in there Jill, you never cease to amaze me. Hope both girls have a good Halloween. I know what you mean about feeling overwhelmed about taking Ally home as an outpatient. I remember when they told me I was taking John home after transplant.....but you somehow manage to get into a groove. We miss you...I'm here if you need me.

Steph: Hey Jill, Hang in there. Happy belated birthday. The G/J tube feedings.. whatever they are doing with her may cause high out put. I never did tolerate those very well.. always dumped. I knwo they are necessary for her since she hasnt eaten but just something to keep in the back of your mind. I am glad the girls are enjoying some halloween activities. icant wait to see some pictures. hang in there. Let me know if I can do anything foryou...
steph

Add a comment:

Name: Email:
Comment:

Notify me of scrapbook updates
Tue, Oct 23, 2007 9:46 PM
As always, our days have been filled with non-stop excitement here in the Heintz family!

Our weekend started off nicely. Saturday we had my cousins wedding to attend, and enjoyed every moment. I wish we could of done something for Jill's 29th birthday, but with all of our other committments, we just ran out of time. We tend to always somehow do nothing for ourselves, and always are too busy thinking of the others around us.

Sunday morning, came and before leaving for Pittsburgh we thought we would have breakfast with my parents and grandmother. While on the way to breakfast, the cars empty gas light was on. Knowing this the night before that our car was low on gas, and knowing from past experience we have driven it before numerous times with the light on empty for miles and miles, we thought we had plenty to make it to the gas station. Of course, as our black cloud would have it, we ran out of gas about a mile from home, just after all the steep hills have been passed, meaning only one thing.....I had to start walking home!!
Breakfast was delayed about an hour, but we finally managed to eat and then make our way to Pittsburgh afterwards.

On our way back, we learned that Ally was not feeling well, and had spiked a temperature. Cultures were drawn, and we knew before we arrived in Pitt, that Sunday night was not going to be much fun.

Once in Pitt, we found out another surprise. The oldest of out three cars (don't let the number 3 fool you, one has 200,000+, and the other has 160,000+ miles), the one I planned to return home in 2 days later, decided it was not going to start!! Again, what else could go wrong?

Monday came, we found a garage to fix our car, which of course needed a new fuel pump...another $800 out the door! Oh well, I guess it could be worse, we could be without the car at all, and I would be then flying home, minus one car.

Monday and today, Ally was feeling much better. She has not had a temperature since after having her antibiotics started on Sunday. The cultures that came back, shown she was growing something in her trache, and whatever it was is being treated and going away as the days pass.

Ally did some working out with PT, standing on her feet with the assistance of a workout board device for about 10 minutes. The goal is to get her muscles and body stronger, so that the rest of her will also feel better, including those lungs of hers!
Besides PT, Ally also had OT. She worked on playing and tasting food. I can tell you now, this will be one of our biggest challenges,,,getting Ally to eat by mouth!! Ally has never really ever eaten anything by mouth, so you can only imagine the struggles she may face ahead! Could mean some tough love, if you know what I mean?

Ally also had a scope of her small bowel yesterday. There was a few areas of some slight concern, so more test will be run Thursday. The doctors never really gave much explanation what they were seeing, but said we should not worry...easy for them to say of course.

The last final piece of information to share is that we are currently working with the hospital staff to develop a plan to get Ally out of the hospital, and home to our apartment in Pittsburgh as an outpatient. Needless to say, this takes a lot of work and planning, and for the most part we were told that Ally should be able to leave as early as November 1st. Don't hold your breath on that, because as past history goes, one doctor says one thing, and the next one on shift the following week has other ideas. At this point we know not to think that something is set in stone, and know to work a day at a time. If the November first happens, great, if not, we will try the next available day ;)

Continue to keep Ally in your prayers, and pray for continued strength, that she will soon be able to make it out of the hospital.

Shane

Comments:
Margaret Ann (duPont PICU): I love the smiley picture of ALly. Talk of a discharge date: YEAH!!

The Bollingers: Glad to here that you had a nice weekend home, sorry about the car troubles though...I am sure for you it seems like one more thing to worry about. Glad to hear Ally is feeling better. Our thoughts and prayers continue.

Landis family: Happy birthday, Jill! Glad to see a picture of a smiling Ally! We feel your car pain - we just had to get a new transmission in one car and replace the other car all in the same week. Not fun! Thanks for the update. We continue to rpay for Ally daily.

Winky Bergdoll: Glad to get an update. Hadn't seen one for 10 days somehow. Prayers continue for Ally and her family and now for the cars! God is with you!

Sheila Duffy: Well its about time we got an update! Ha Ha! Sorry to hear about the car problems but I like reading that Ally is getting stronger. I'll cross my fingers for November 1!

The Davidheiser's: It is great to hear such good news about Ally. We miss her in our class and are making something for her. We will have it for her soon. We wanted to wish Jill a happy birthday! Hope it was fun. We keep you all in our prayers at home and at Sunday School.

Add a comment:

Name: Email:
Comment:

Notify me of scrapbook updates
Wed, Oct 17, 2007 9:49 PM
Not all that much to report since things have been going well. Ally finally is off her fentanyl (narcotic) and they will probably start to wean her methadone on Friday. She has also been doing CPAP all day and will probably start to do it at night too instead of the bi-pap. Tomorrow the docs said she could try a speaking valve so I am anxious to see how she does with that.

My Uncle Wally is in town on business so we got to visit with him some tonight. I also got to catch up with some of our friends at the hospital. Logan was looking good and hopefully he will join us on the floor soon (cotaforlogand.com) Matisse is another friend of ours and she is currently waiting for a multi-visceral transplant. She and her family are here all the way from New Zealand (and I thought I had it tough) Matisse was admitted early this morning with a line infection but seems to be doing better. (I don't know her official address but you could go to caringbridge.org and then click on visit a site then type in matissereid).

Grandmom also game into town today. Ashley and I will be headed home for the weekend so Grandmom can keep Ally company. Shane and I have a wedding on Saturday and then we will all be headed back out to Pittsburgh on Sunday. Ashley has open house at school on Monday so Shane will get to be in town for that and have some time with both of the girls.

I am sure I will not be updating again until Sunday so no need to worry. Oh yeah I almost forgot Ally's biopsies looked good from this week and next week they will probably switch her to an oral dosage of steroids.

Take care,
Jill

Comments:
Robin - Angel_Wings: Hey Girlie! Keeping you in my thoughts and prayers! Glad your biopsies were good! Hope you're having a great weekend with Grandma! Sending you GREAT BIG Angel hugs, smiles and rainbows!

The Bollingers: Great news, keep up the hard work Ally. Hope you enjoy your weekend. Our prayers continue for all of you.

Rachel Frey: Jill- sounds like things are going well, Im so happy for all of you, I hope things keep improving. Enjoy your weekend.

Sandy Maicher: I'm so glad to hear that Ally is doing so well. We miss all of you and are trying to plan a trip out to visit. Have a wonderful weekend. Our prayers continue to be with all of you.

Sandra DiCesare: Jill,I was so glad we got to catch up last night.Happy to hear Ally's biopsies looked good.Have a safe trip home. Have a wonderful weekend. We Hope you have a great birthday on Sat. You deserve it!!!! As always Ally is in our thoughts and prayers!!!! Hugs to all of you.

Lynne: Ally looked wonderful, so good to see you being able to hold her last night! Have fun this weekend, and Happy Birthday Jill!! :) Enjoy this weekend, you deserve it!

Add a comment:

Name: Email:
Comment:

Notify me of scrapbook updates
Sun, Oct 14, 2007 9:07 PM
Yet another week has flown by and Ally is getting stronger everyday. Sometimes it seems so strange how time can move so fast and yet so slow all at once. I can't believe we have been in Pittsburgh for 2 and a half months. There has been more and more talk of Ally being an outpatient and I am hoping that this week we will be able to set a target discharge date to aim towards.

We had more visitors this weekend and Ally and Ashley both enjoyed their time with their grandparents and cousins. Ashley got to visit the Carnegie Science Center which was a ton of fun and is definitely a place we will re-visit. She also had yet another trip to the Zoo (I think that was her fourth visit) but managed to see some new things. Including one of the tigers face to face. She told us that if the glass wasn't between them the tiger would have licked her!

Ally got to have some one on one time with her Gram and Pop and then some alone time today with her Daddy. She is settling into a nice routine as far as being asleep and awake. This of course is a huge help because I know when she is napping I can have a few hours of alone time with Ashley without feeling guilty for leaving Ally. She has also been participating with PT and OT. PT has been working on getting her to stand a little (with lots of support of course) and OT has been doing a lot of food play. The girls also got a new Barbie video this week that we have watched a least two times everyday. (Annie and Sandra I don't know if I should thank you for this video or send it back!)

Medically Ally is doing well too. We have finally reached her goal on feeds (45cc/hour). This week I plan on working with her to get her to take some formula by mouth. She has been doing well taking some of her meds by mouth so that is at least a start. Her scope and biopsies looked good and that makes three weeks of good results. Her white count was on the rise a little so she had some labs to check for EBV and CMV which can be nasty viruses for bowel transplant patients. We should have those results tomorrow. She has been doing well on her Bi-pap machine and today did CPAP for the entire day. She was put back on BI-pap tonight because she was breathing rapid and seemed a little distressed but lasting all day on CPAP was a good first day.

Ally has finally made it off her insulin drip and her glucose seems to be staying between 70 and 200. Which means it is still fluctuating a little but much better than it was before when she was anywhere between 40-455. They have also been able to wean her fentanyl a little everyday and she should be off her drip by the end of this week. Then we will need to start weaning her methadone and then the ativan. She really seems to like the methadone so that might be a slow wean too.

I guess that about sums up the week. Sorry I never get to update that often but like I said time just seems to slip away. If I think I am crazy busy now I don't know what I am going to do when Ally is outpatient but I still can't wait to find out:)

Jill

Comments:
mandee: aw i miss you baby girl! i'm glad to see you're finally up to 45cc/hr missy :) can't wait to see you again. say hi to ashley and mom and dad for me. love, mandee

Nan Moyer: I am happy for all of you! What wonderful news! Praise be the Lord!

uni-brower: love the video & the Outpatient Word--great news still praying hard-love to all

Kelly J, 3CSouth: I'm glad to hear all this good news. She is so cute in her video, I can't believe how good and strong she looks. Stay strong!

Bruce & Deb S.: Your doing a great job of taking care of both Ally and Ashley. Thanks for keeping us updated, we look forward to the updates and we pray for you all everyday.

winky bergdoll: Answers to prayer, AMEN! We continue to pray for Ally and all the rest of you who love her so dearly. Don't apologize, you do a great job of keeping us updated. Your plate is so full I can't imagine how you keep from dumping some on the floor!
God is with you!

Dawn Stinnard: That's wonderful news. Wait the day will come and she's home and then you'll are going to love it. Then your going to need a break, no time for the weary. Keep the faith we are. Everyone is in our prayers.

Carol Yeager: I am so happy for you and your family that things are beginning to look up and that you can finally start to have positive thoughts about Ally and her future
I am praying and thinking about her constantly and my prayers will continue to come her way to see that she will get better more and more everyday.GOD BLESS and GOOD LUCK

Oscar S.: What wonderful news! We keep praying that for the whole family. That light at the end of the tunnel appears to keep getting brighter!!!

Kristin Hedgelon: I can hear (read) the exuberance in your updates! Our prayers are being heard!

Kristin Hedgelon: I can

Steph: So glad to hear all the good news. I pray the feedings and the breathing and the standing all show some great progress this week so you guys can work on getting out of there. Please give her a big hug. Praying for all of you guys
steph and nate

The Bollingers: Keep the good news coming Ally. All your hard work is paying off....Our prayers and thoughts are with you. God Bless you all!

Pastor & Kathy: Thank you God for Ally's healing. Continue to strengthen her each day. Thank you for an excellent hospital, skilled nurses and staff and wise physicians. Be with Ashley, Jill, Shane and their entire family as they go through the long days of recuperation. In Jesus' name. Amen.

phil h: glad to hear the good news, I and the 2nd grade Sunday School at St. John's will continue to pray for you Ally and your family

Sandy M: I'm glad to hear that Ally is doing better. Just the fact that she is taking some of her meds by mouth is amazing. Our prayers continue with all of you.

Sister Millicent: Thank you again for wonderful news! We continue with our praises and our prayers. Looking forward to seeing you this weekend.

Add a comment:

Name: Email:
Comment:

Notify me of scrapbook updates
Wed, Oct 10, 2007 9:45 PM
I hope everyone is enjoying the new video that Shane added of Ally. I know it has been too long since the last update but we were just too busy enjoying our week.

Ally finally moved out of the 6th floor ICU she is on the 7th floor's ICU. This is yet another step down unit but with semi-private rooms. Ally's roomate and her family are wondeful so that helps a lot. Plus it is still all the same docs and most of the same nurses that we had downstairs. She was also move off of the vent and onto a Bi-Pap machine. I am hoping that in the next couple of days she can do some sprinting off of this machine.

I got a great look at Ally's belly today and I really think her belly could be fully closed in the next two to three weeks. She has progressed well on her feeds and dare I say it but she is at 40cc/hour. Her overall goal would be 45cc/hour. For the first time in her life Ally's docs wrote an order to discontinue TPN!!! We did have to work on Ally's blood pressures a lot today. The last few days they have been ridiculously high (150's/100's) and that is with Ally already recieving three blood pressure meds. All of her doses have been increased and at least by tonight her blood pressure was 130's over 80's.

Ashley and Ally really enjoyed themselves today. Ashley got to sit in bed and play with Ally. They played Barbies and watched a video, played Candyland and Ashley showed Ally the pictures from her birthday on the computer. The girls were laughing and giggling and just acting silly like little girls should. It was really a wonderful day.

If you didn't checkout the new video of Ally make sure you do, she is too cute.

Jill

Comments:
Diane: It is great to read your journal entries with positive news about Ally's recovery. No TPN! Finally! You are great parents taking care of Ally and Ashley's needs and ensuring that they have special sibling times together. I'll continue praying for you. It's so great to see the progress.

Sheila Duffy: Now that's an update I love to read! Yea for Ally !

Pastor & Kathy Pearson: Wow! What wonderful progress. You make each of these steps feel like the triumph that it is. Know that our prayers of thanksgiving and for healing abound. Pastor

andrea and jeremy horn: it made us smile to know that your family has had a happy week. we wish you all the best...you deserve it! the video of ally was wonderful!

Carol Yeager: Thank you so much for the beautiful video and may God bless Ally and your family with all the love in the whole world. I cant tell you what it meant to me to be included in watching such a lovely moment of you and your little girl enjoying some wonderful moments together.It was really touching
Thanks so much and may God Bless you and her allways

Dawn Stinnard: Hey that great news to see they've moved her. Hopefully one step closer to being home. Glad to hear she likes her roommate, that should help to keep her spirits up. Tell Ashley great pictures. I liked the mini golf too, cool colors, neon alright. Noelle and a bunch of us went mini golfing too. We all tried to stay out of the water, to say the least my kids aimed for the water. But a great time was had by all.

Noelle: Great to hear that things are looking up for everyone in the family. Ashley must be so overjoyed just to play games and spend time with her sister! It also must be great for her to have a roommate. I loved the pictures of the golf party! That was such a neat idea, and of course, happy belated birthday to Ashley!

Rachel Frey: It is so wonderful to read about and see Ally's progress. I hope that things remain positive and we can't til you all are back home.

Peyton: Hi Ally! I got to watch your video today! I couldn't take my eyes off of it. You sure know how to make a silly face!! Hugs to you and Ashley (and Aunt Jill and Uncle Shane).

The Bollingers: What great news! Keep up the good work Ally. The video you shared with us was wonderful. What a happy little girl considering all that she has been through, that is all part of the love from her family. The pictures of Ashley's party were fantastic and everyone was having a great time. Our prayers and thoughts are always with you. God Bless

Sandy M: It's great to hear about the good progress that Ally is making. The best words I could have read is Ally being taken off of TPN. I have really grown to despise those 3 letters. I watched the video from yesterday numerous times and it was great to see Ally having some fun. Our prayers continue for all of you.

Sister Millicent: How wonderful to hear of the continuing progress and to see the great video! My prayers continue for all of you.

stephanie: So glad things are looking up. We think about you everyday and pray for your whole family

Add a comment:

Name: Email:
Comment:

Notify me of scrapbook updates
Sat, Oct 6, 2007 9:56 PM
Crazy, crazy, crazy, or busy, busy, busy!!! I can never decide which way to describe my life. Maybe it is because I am so busy that I am going crazy:)

Anyhow, Ally's last few days have been okay, certainly not as good as the beginning of the week. Thursday and Friday she had fevers and today she had growth on her blood and urine cultures. Yesterday she was started on IV antibiotics and she had been off them about five days. Not to mention the line that we are getting positive blood cultures from was just placed on Tuesday. More than likely it is an overall blood infection and not just a line infection. The good news is she did not have a fever today and she was much more happy and content compared to yesterday.

Ally was also having increase stool from her ostomy so the docs backed off on the feeds a little. The increase output along with the fever made the transplant docs think rejection, but a scope and biopsies were done and everything looks good. We are all in agreement that a line infection would be better than rejection (lesser of two evils). She is doing well on the vent and has been mostly on CPAP settings.

Thankfully today was a great day for both Ally and Ashley. Ally was extremely happy this morning and this afternoon (although in between she had some meltdown moments). She was laughing, smiling, playing games, reading books, and watching movies. She was also awake from 8-4 and was beyond exhausted. Not to mention somehow she missed her noon methadone dose so by 4pm she was getting a little wild. The nurses were nice enough to sneak in all of her cousins to visit. I think Ally enjoyed this just as much as all of her cousins did. She even got dressed up for them. First she applied her big girl chapstick (which is bright red and Ally applies it for about five minutes. We have to get a picture!). Then she put on her new princess dress (thank you Patty her stoma and wound nurse) along with her matching headband and shoes. She was really too cute!

Ashely had a blast at her glow in the dark miniature golf birthday party. Afterwards she went with her cousins back to their hotel to swim. Then we all had a nice dinner out and headed back to the apartment for presents and cake. However, I think I forgot to mention that it was 10pm or after when they all went to bed last night and they were all awake before 7am. Not a good combo. Tonight I am praying that they all sleep to 8am (I am not joking either I am really going to pray for this). Tomorrow Ashley has another birthday party to go to for a little boy in her class and then I think we are headed to the zoo or the childrens' museum.

So I guess overall the week has been good. Ashley had another babysitter the other night (her one theache's daughter) which was a help and I think she will be helping out on a regular basis. Not to mention she was such a well behaved girl all week at the hospital and really got to enjoy being with Ally again. Ally's week was up and then down but seems to be back on the upswing and that's all that matters. We have a ton of pictures from the week so I will try to have Shane post some soon. Please leave Ashley some birthday messages in the guestbook and enjoy the rest of the weekend.

Also before I forget thank you again to Lynne. All of our faithful website followers may start to get sick of seeing her name but it is going to come up a lot because she has been such a huge help to me (not to mention she has now enlisted all of her coworkers, friends, and family to help me too). Lynne had planned a little outing the other day for Ashley as part of a birthday present and Ashley had a blast with all of the kids. Thank you Lynne, Terri, Grace, Kelly, Sidney, and little Jack too:)

I'll try to update by Monday.
Jill

Comments:
Aunt Sherry & Uncle Wally: Happy Birthday Ashley, you certainly look like you had a fun time at your birthday party. So glad that you had fun with your cousins and friends. Also it it good to hear about the things you do in school, and that you are enjoying it. We want to thank Mommy for all the info she sends to us about you and Ally. And also thank Daddy for all the wonderful photos. And we are really happy when it is good news. Enjoy today, because I think you have another enjoyable day. We hope to see you and Ally real soon.
Happy Birtday sweetie.

Denise: Happy Birthday Ashley!! Sounds like you had a great birthday.
We keep Ally and the rest of your family in our prayers every day. Denise & Larry

Kathy & Jeff: Happy 5th birthday, Ashley!!!!! You don't know us, but we've been following your website and praying for you and your family. Our church was praying for John Maicher and we've been following his website. They asked for prayers for your family and there was a link to your site, so we've been following and praying for you, your sister and your mommy and daddy. Kathy & Jeff

deedew'06@yahoo.com: ASHLEY !!! Hope your Birthday was GREAT!!!! Libras are the BEST!! Can't wait to see all the pictures. Keep being such a Wonderful big sister to ALLY! Hugs and Kisses DEE HPHC

Audrey Eddinger: Happy Birthday Ashley, hope you got lots of good presents, have a good week. Glad Ally is doing better. Our thoughts and prays are always with you.

brenda: sounds like you had a fun birthday ashley, happy, happy birthday from the norman's your mom can tell you who we are and please ally keep getting stronger we pray for you all the time to get better soon! best wishes brenda and rod

Barbara: Happy Birthday Big Girl Ashley!
Love
Miss Barbara

Miss Donna: Happy Birthday Ashley!!!! I hope you had a great one.

Michele Trievel: HAPPY Birthday Ashley :-)
glad to hear Ally had some good days hope they will go on, Keep Fighting Ally.....

The Bollingers: HAPPY BIRTHDAY ASHLEY!!!! How exciting to be able to spend some fun time with your cousins. I am sure they had as much fun spending time with you as you did spending time with them. Tell mom, dad and Ally we are thinking of them as well. God Bless you all.

Cortney: Happy Birthday Ashley!!!

Aunt Karen: Happy Birthday Ashley, we hope you had lots of fun wiyh all your cousins. We miss all of you and hope to see you soon. Love Aunt Karen,Uncle Mike Lucas Cortney and Colton

Uncle Jim & Aunt Becky: Happy 5th birthday Ashley!!!! Enjoy your day!!! We love you.

Peyton: Hi Ashley! Mommy and Daddy already left a message, so I thought I would leave one of my own. I hope you had a fun birthday with all of our cousins! I am sure you had a great weekend. I hope to see you soon. Love, your cousin, Peyton

winky bergdoll: Happy Birthday, Ashley!
We just love the video of you dancing. It is so much fun to watch. It can make us happy on a blue day everytime.
God Bless You!
Aunt Winky

Toni: Ashley,
You don't know me but I feel like I know you and your family. My sister, Gelsina, works with Lynne so this is how I know about you and your family. I read the website all the time and admire the sister you are to Ally. I know you are very special to Ally. I hope you are really enjoying all of your birthday celebrations.

ANDREA MOYER: HAPPY BIRTHDAY ASHLEY! HAVE FUN! DON'T EAT TOO MUCH CAKE!

Keri: Happy Birthday Ash! 5 years old already? It sounds like you had lots of birthday celebrations and I hope they were all tons of fun! Your drawing for school was beautiful - keep up the good work and HAPPY BIRTHDAY!!

Tracy Stroble: Happy Birthday Ashley! Can't wait to see the picture of Ally with the chaptstick. I can only imagine. Know you are prayed for and loved. Tracy/Angel_Wings

Gelsina: Happy Birthday Ashley! I'm a friend of Lynne's and she told me about your birthday celebration with her. She's really a fun girl, isn't she? I know it isn't home, but I'm happy you are getting to enjoy Pittsburgh while you are here. And, I very happy for you, too, that Ally is beginning to feel better each day - she's so blessed to have you for a big sister. I hope you birthday weekend finishes up with lots and lots of fun with your cousins. Enjoy!

Uncle Clint & Aunt Jen: HAPPY BIRTHDAY ASHLEY!!! It sounded like you were enjoying all of your cousins when we talked to you last night! You certainly sounded like you were in the middle of a lot of fun! Love you (and Ally too!)

Becky: Happy B-day Ashley!! We're friends of Kirsten Y. so your family doesn't know us. I am continually amazed at what a strong family you are together. I can only imagine what it's like to juggle a husband, seriously ill child, a healthy active child, family, and friends, etc. I gave up trying to figure the

phil h: Happy Birthday Ashley
Let's hope things continue to go well for Ally
We will continue to pray for your family in 2nd gr Sunday School at St. Johns

June: Happy Birthday Ashley! It was great to hear your cousins could be with you to celebrate your birthday. We'll keep praying for Ally to get better and come home soon.

Carla and Bob Brodbeck: Happy Birthday, Ashley! Looks as though you've made many wonderful friends in Pittsburgh already! Continue having a wonderful weekend; you and Mommy deserve it!

Sandy: Happy Birthday Ashley!!!! You are a great big sister. Enjoy your birthday. I'm glad your sister is feeling a bit better and that you can play with her. Tell mom, dad and Ally we are thinking of all of you and praying everyday that Ally continues to get better.

Add a comment:

Name: Email:
Comment:

Notify me of scrapbook updates
Tue, Oct 2, 2007 9:03 PM
Today was the first day that the "H" word has been mentioned (the "H" word is home and I don't dare mention this in front of Ally). Of course this is a long way off but the nurse who does all the homecare coordinating came by to talk to me this morning. It is never to early to get started on insurance approval for homecare infusion, equipment, nursing, therapy, and whatever else it takes to get Ally out of the hospital. We talked a little about what Ally will need and what companies she will start contacting. If all goes very smoothly Ally could be outpatient in another month but that is a big "IF".

Ally's last two days have been good. Yesterday she had a wonderful morning and by noon she was completely worn out from playing all morning. Needless to say she slept for the next four hours only to wake up on the wrong side of the bed. Ashley was very dissappointed that Ally wanted nothing to do with her and would not even play one game of Candyland:(

This morning Ally was in an okay mood. She had her melt down moments but twice I caught her smiling. I was also pleasantly surprised when she worked with her OT instead of throwing the toys back. She was supposed to get her first trache change today but she had scheduling conflicts. ENT came in to change her trache just as she was headed downstairs to IR to have another central line placed (double lumen then we can loose all of her other lines). I hope ENT comes by early tomorrow to do the change. Once she has her first trache change she will be allowed out of her bed and then I can finally hold her!

The scope that was done yesterday looked good and Dr.Kyle said that the biopsy looked better than last weeks. However he said he would like her scoped again on Thursday because the biopsy was not perfect. She has not had her feeds increased at all this week so hopefully we will get around to that tomorrow. Most of the day today her feeds were off so that she could be sedated in IR. The only other changes have been the vent weans. Ally did a CPAP trial yesterday and ended up doing so well that she was on CPAP for almost 6 hours. She was then put back on a rate for a few hours and then went to CPAP again. During rounds the docs said that she could just switch to CPAP all day:) Of course then she got sedated and paralyzed for the new line so she is now back on a rate:( Hopefully she will be back on CPAP tomorrow.

Ashley has also been having a good week. I think she may explode with excitement and exhaustion by the end of this week. She is counting down the days to her birthday celebrations (yes, celebrations not celebration) I think next year she may be dissappointed when things are back to normal and she just has her boring birthday party at home. The festivities begin Thursday and will not stop till Monday. Plus she has a party for one of her classmates on Sunday. She also had a new babysitter last night (someone from home who goes to school at Duquesne) and one of her teacher's daughter is going to babysit for a little on Thursday. This is a huge help for me and Ashley loves all the attention. I am going to add a link to Ashley's school. Ashley is one of the featured artist this month in their online art gallery.

Take care,
Jill

Comments:
Nan Moyer: My thoughts and prayers continue to be with each of you.

Jodee Reid: HI Ashley
So glad you had such a lovely birthday with your cousins and that ally was so happy for you. Hope to see you on Thursday.
Jodee, Matisse and family

Carol Yeager: HURRAY and Halaluyah for the great news that things are finally looking up for you and your family.My prayers are with you and your family allways. I pray to GOD that it is going to be going smoother for your daughter from here on in ,God knows she deserves to be on the road to a full recovery.PLEASE do one thing for me and give her a great big hug from all of us here at Douglassville,Pa,The stars are shining down upon her and the GOOD LORD will be watching down over her.Keep up the Faith and be thankful every day that you have with her.GOD BLESS

uni-brower: love hearing things are going better--we love to hear of that

Keith: Keep the faith and stay strong.

Andrea Steffe: I am so happy for all of you to hear this news! I will continue to pray that Ally's progress continues.

Cris: It is SO exciting! I think Ashley is one lucky girl to have you as a Mom. You somehow never neglect her needs when Ally is in so much need! You are the best Jill! Love All of us here.

MJ/Angel_Wings: So glad to hear things are going well, wlll continue to keep Ally near to my heart and always in my prayers.

Pastor & Kathy Pearson: What a wonderful update! We rejoice for all of you. Tell Ashley I am ready to play Candyland anytime. Our prayers and those of all of us at St. John's continue. Pastor

Sandy M: I'm glad to hear that things are a little better. It's nice to hear you actually talk about being an outpatient...even if it is still far away. Our prayers continue to be with all of you.

phil h: Glad to hear things are going better, and I hope all continue to goes well

The Bollingers: Keep the good news rolling in Ally. You are doing a great job! Our thoughts and prayers are with you. It is wonderful to read the notes that you post, everyday seems to get better and better for all of you. To be that excited about celebrating a birthday (to be young again, haha) It is funny you mentioned Duquesne, our daughter has a college visit there this weekend. May each day be brighter for all of you. God Bless.

Add a comment:

Name: Email:
Comment:

Notify me of scrapbook updates