Heart of a Warrior

Welcome Home, Allie!

2009-05-09T16:25:00.006-05:00

(Emma was at track practice)

Freedom (At Last!)

2009-05-06T11:14:00.002-05:00

It's the day that seemed quite impossible--I am out of the hospital after 3 months and who knows how many days!!!! People have asked "What was it like finally getting out?"Well, at first I was nervous--would everything be what I thought it would be? Most of it was. My first step out, a breeze blew, making all the smells of the city rush to my nose. The first thing I smelled was cigarrette smoke,

Time to Celebrate!

2009-05-04T17:16:00.002-05:00

Barring any hiccups in Allie's amazing progress, by this time tomorrow she will be moving freely outside, breathing fresh air for the first time in 3 months!! Better have a box of tissues when we leave. I'll be crying all the way to the Ronald McDonald House.Even better, we were told this morning that if Allie's clinic results Thursday morning are good (& I think they expect them to be), she'll

Life in Children's Memorial Hospital

2009-04-29T12:55:00.002-05:00

Hello from rm. 517!!! This is Allison--for the third time, but the first after the transplant. People have been very supportive and just this morning my mom handed me a ten-pound plate of heart-shaped cards from the Pancake Cafe. I think I opened about thirty, and I'm not even a fourth done.People have asked me if I feel different or like a new person--I GUESS, if I think really hard. I feel

Allison and Erin Hunter

2009-04-28T13:00:00.002-05:00

Allison and "Warriors" author Erin Hunter (aka Victoria Holmes). For those of you who don't know the story, the Warriors series of books is one of Allie's all-time favorites. Friends of ours, Lori and Brian, contacted Erin Hunter through the Warriors' Web site. Vicky (pen name Erin Hunter) was so moved that she wanted to meet Allie, and suggested that they do so the next time she was in the US,

Allie is back in 517!

2009-04-27T20:17:00.002-05:00

Allie began her day by saying goodbye to Schroeder, her IV pole, & is ending her day back in her old room on 5West. What a glorious day!! You'll hopefully see a post from Allie on these events in the next couple days. Her thoughts on this are more important (& interesting) than mine.We've already taken a walk around the floor & stopped at our favorite window to view the skyline. We laughed

On track to be out of ICU on Monday

2009-04-25T10:16:00.002-05:00

Looks like we have a good chance of being out of ICU on Monday. Two factors are at stake: she first has to get off of Milrinone, the last actual IV drug that she's on, and secondly, a room has to become available up on the 5th floor cardiology unit. We think the second part is being taken care of. Our understanding is that they are cleaning the room right now. Apparently it's a triple

Article in the Naperville Sun about Erin Hunter and Allie

2009-04-22T13:39:00.002-05:00

Just wanted to post a link to this story in our local paper. Click the headline above. Enjoy.

The Sun is shining in Rm. 201

2009-04-21T10:07:00.003-05:00

It may be cloudy & chilly outside but not in Rm. 201! After a great night's sleep at the Ronald McDonald House (can't say enough good things about that place), we're ready to "go to work" again today. As I write Allie is sitting in her chair waiting for breakfast. Yesterday at 11:30 we had a hard time getting her to sit in her chair for 30 minutes (pain & discomfort). Less than 24 hours later

Moving right along!

2009-04-20T11:42:00.003-05:00

So many machines & medicines have been removed in the past 24 hours that I've lost track of it all. That's good news!Allie's nurse & I managed to get her up this morning & dangle her feet over the side of the bed. The goal was to move her to the chair next to the bed. Allie didn't make that goal but she did her first round of breathing exercises instead. She showed her fighting spirit because

Allison"s breathing tube is out

2009-04-19T20:56:00.000-05:00

Late this evening the doctors agreed that Allison's breathing tube could come out. To us it's a milestone because she is breathing on her own---a real sign of progress. Tomorrow they will see about letting her dangle her feet off the side of the bed which also means sitting up and finding your balance. So we are still making progress. This pace she is on is not abnormal. Many pediatric heart

Another good night

2009-04-19T10:34:00.000-05:00

Allie has been semi lucid this morning as they bring her sedatives and pain killers down. We're having a tough time trying to keep her comfortable though when she grimaces but can't talk. She does have a Yes/No board that she can point to but so far we've been unsuccessful. The team of doctors continue to be encouraging and hope to have her breathing tube out by tomorrow. Outside chance of

Allie had a great night last night and is doing well today....

2009-04-18T14:53:00.003-05:00

....She's still asleep though. She was revived yesterday for a short while but the doctors wanted to put her under again just to give her more time to heal. While she was awake she did nod her head when we told her she was in the ICU. But she was in and out and the time was brief. Memorable though.I won't say there haven't been scary moments in ICU, but all in all she is doing well. When

Allie is in recovery phase

2009-04-17T10:45:00.000-05:00

Allie should be coming off the major part of her sedation that forces her body to relax and her mind to sleep. We should see her eyes open this afternoon. Mom and Dad will be there when she awakes. We'll have Taylor Swift playing off her MP3. Right now I'm catching up on work and Fran and the girls are hanging. The doctors say that everything they have had to do so far has not been out of the

Allie is doing well in ICU

2009-04-16T10:40:00.000-05:00

Fran and I are in the waiting room. The nurse will call us when we can see her. We have to go in fully gowned. Allie will be heavily sedated for the next 24 hours. Surgery went very well. No sign of acute rejection or other complications. Heart is beating on its own with no assistance from a pacemaker. It is a very good heart they got for her apparently. More later but for now we are all

Allison's New Heart Is Here!

2009-04-16T01:44:00.001-05:00

We learned this evening at around 7:45pm that the doctors accepted a heart for Allie. She just went into surgery at 1 am Thursday morning. At 3am the actual heart will get to the hospital and then the actual surgery will begin. By 11am she May be out of sugery and in the ICU.We were joined by Pastor Greg and our friend Erin. Grace and Emma are with us and sleeping in Allie's room. Fran and I

Happy Easter, We Rise Again

2009-04-12T08:20:00.002-05:00

If anyone had told me a few months ago that I'd be running through Lincoln Park along the lake on Easter morning, I'd have said, "Impossible!" But that's where I found myself this morning. It's a beautiful day to wish all of our family, friends & neighbors Easter hope & renewal. This message is all the more poignant as we approach week 10 & realize that it's easier to track how long Allie has

Odds & Ends

2009-04-05T15:30:00.002-05:00

To all those who had cards & packages returned, please try, try again. We learned a couple weeks ago that the hospital mailroom decided Allie had gone home. A lot of wishful thinking I guess. Everything's been corrected & Allie is receiving mail here again. As Holy Week begins we focus on the most difficult but most significant part of Christ's journey on earth. It always reminds me that

Mary Kay Spring Boutique Trunk Show & HOW Fund Raiser

2009-03-28T07:34:00.008-05:00

Mary Kay Spring Boutique Trunk show & HOW Fund raiserDate: Saturday April 4thLocation: 267 Scott ave. Glen EllynNational Sales director Brigit Briddle’s homeTime: 2:00- 5:00 p.mCome experience the New Mary Kay mineral products, color line of cosmetics, our spa line and fabulous skincare collection.Goodie bags for each attendee, raffles and door prizes!Bring a friend!Proceeds benefit the Allison

Random Photos

2009-03-27T13:06:00.017-05:00

Allie's room in the hospital. Whenever someone walks into this room for the first time, they are amazed at the lived-in feel, but mostly its the cards on the wall. Allie and her tutor, Mrs Ebervein. Allie has school each day for an hour. But one day while watching her click away on the computer, we had a brainstorm that maybe we could make better use of this machine by getting educational

Happy Birthday Allison

2009-03-24T14:36:00.003-05:00

Each Week Has Its Own Signature

2009-03-22T08:58:00.002-05:00

By the end of each week I look over my shoulder & realize that it's developed its own signature. One week was all about getting school & activities coordinated. Another was about the miserable rash that had grown on Allie's arm around her PIC line. The next was about moving the PIC line to her other arm & having housekeeping do a thorough cleaning of Allie's room (had to move everything out).

Dad's Right--The wait is the worst part

2009-03-16T16:10:00.003-05:00

Dad is so right when he says waiting for a heart stinks. I could care less about the transplant (that might not be true), but I am so mad about the wait for the heart. Also, my birthday is coming up soon--March 24th--and don't feel bad if you can't get me a heart--neither can the doctors.So Dad, I liked the lyrics. Mom laughed when I got to the "Oohohohoho" part because I was saying it like Santa

The waiting is the hardest part

2009-03-16T10:11:00.002-05:00

Tom Petty was right. The waiting is the hardest part. That song is stuck in my head like a broken record. Anyone you talk to who has gone through a transplant will probably tell you that the wait can be excruciating....some say harder than the actual surgery and post-op. We're certainly building up a lot of memories here at the hospital. Here are a few which will also serve as an update

Allison has taken over!!!

2009-03-03T22:04:00.002-06:00

Hello from the hospital! You may think this is my mom or dad, but NOOOO--this is Allison! Of course, you have heard from my parents that I am doing fine. But you haven't heard anything from me, and it's about time you did. So yes, I'm doing fine, and the nurses are nice (they can't be mean, otherwise I'd have them fired...8)...) So right now I'm watching Family Guy (Uncle Time, I'm thinking of

New Web Site for Allison Huff HOW Fund

2009-02-26T10:43:00.005-06:00

As we said in our last post, we have set up a non-charitable fund for Allison's heart transplant. The purpose of the fund is to raise money for immediate and future medical needs. This new Web site, while not a replacement for this Blog, might make it easier for people to contribute---or at least present another option. You can now donate through this site by clicking on the Donate Button, which

Quick update

2009-02-22T22:11:00.005-06:00

We don't really have a blog post for this week. There wasn't much interesting or newsworthy to update you on. We could tell you about our other daughter's dental check-ups. They went well. No cavitites. I could tell you how I connected with some old friends that I haven't spoken to in years, or that Allie's favorite author (Erin Hunter) sent her a package of books and posters. That was really

Week 3

2009-02-16T18:42:00.002-06:00

Week 3 of Allie's great adventure at Children's Memorial began with fewer doctors & nurses than expected. A blessing. Don't get me wrong, we love the entire staff here. However the number of questions can get tiring & overwhelming at times. Instead of physicians, Allie met with teaching staff this afternoon...a very good thing. She'll receive her school instruction every week day at about

A week of getting settled in

2009-02-14T13:30:00.002-06:00

After much hard and appreciated work from family, friends and neighbors, we can finally say that we feel settled in.We have meals coming to our home thanks to Kitty S, Judy O and Donna W who are helping to organize this. We never realized what good cooks we have in the community. That's a real blessing, but there goes my diet :-)We're set up with a laptop for Allie in the hospital thanks to

Pacing Ourselves

2009-02-08T20:26:00.010-06:00

It's hard to spot the sick girl in this picture. They all look healthy to me. All smiling little girls, cousins having a good time.Looking at this picture, we can't even believe it's the same week. What started out so traumatically and intensely, ends so, so....what?. Normal? Not quite the word we're looking for. "End of the beginning" might be more fitting, but reality says that this is too long

A few web sites worth looking at

2009-02-08T12:51:00.004-06:00

For Parents:The United Network for Organ Sharing: This site will give you the statistics behind the waiting times and the number of patients waiting for any type of transplant. Click on the Data tab to see the stats. I'm really not sure if I'm using the site right, but maybe someone out there can explain it to us. Experts only, please.Scientific Registry of Heart Transplants: Information that's a

All in all, a very good day

2009-02-06T01:01:00.003-06:00

When you are at CMH, there are a lot of people that want to see you. Doctors, nurses, psychologists, social workers, magicians (seriously, on Tuesday night I came back to the room to find a magician in the room doing card tricks). Anyway, you get the point. It's all good, but you have to learn to deal with it. I think Allie is getting there.Take last night for example. They put her on this drug

Allison is on the National Heart Donor List

2009-02-05T14:54:00.002-06:00

Today, we signed the official papers for Allison to be on the National Heart Donor list. When a matching heart becomes available, she will be on the list of candidates to receive the heart. Here's what that means in lay terms:Allison's name and profile are entered into a national database that hospitals keep. The heart she receives has to be from a person around her age or size.Most of the

Quick update on Allie

2009-02-04T23:29:00.002-06:00

After coming out of the MRI, where she had to be sedated, Allie was really tired, her throat hurt, and she was still reeling from the shock of the news she had heard from us earlier. It was a tough day for all of us.But it ended better. She ate well. She talked a bit even though her throat hurt. She laughed at my inanity. She asked me to explain certain plot lines while we watched Lost

Please send me your email address if you think I don't have it

2009-02-04T22:52:00.003-06:00

When you post to this site, it does not give us your e-mail address. If you've never e-mailed me then I might not have your address. Please send a quick email to me at johnhuff@wowway.com so I can put you in my address list. Make the subject line Allison Huff If you have e-mailed me, then you can ignore this.Thanks

You, your kids and the "Google Machine"

2009-02-04T21:57:00.005-06:00

Just a word of caution here, especially concerning looking out for your kids. There is a lot of great, accurate information out on the web about Restrictive Cardiomyopathy. WebMD has accurate information and can be a great source for understanding what the disease is. But it also has statistics, and trust me, when you read the statistics, you will cry. I read the statistics on WebMD and

Allison will need a heart transplant

2009-02-04T14:49:00.005-06:00

It's official. We're providing this info. here because the news has been given to Allie. The next time she sees home, her room, her beloved books, her school she'll be a heart transplant recipient. Hard to take in for us much less her. And if any of you know Allie, she is really ticked off right now.She has to stay here in order to be on the priority donor list. If we opted to have her come home,

More on Children's Memorial Hospital

2009-02-03T22:30:00.001-06:00

Click the headline above to see the kind of care Allie is getting. I think the entire staff has seen herJH

Allie is doing fine after the cateritization/biopsy

2009-02-03T17:29:00.001-06:00

We got to visit Allie in the recovery room where she was awake and was able to joke around a bit. I asked her how her MRI went---which we've dubbed "Massive Rear Inspection" and that cracked her up. She actually looks quite well. That's the rub of course. A kid who looks so well but can be going through all this.We'll meet with the doctors later on today and they will tell us what the

Catheterization is complete

2009-02-03T13:32:00.000-06:00

Dr. Jeffrey Gossett came in to tell us that the catheritization was successful and that Allie is coming through fine. He did give us some limited feedback and it was more positive than we expected. There is little to no lung damage, but she definitely has Restrictive CardioMyopathy. As Fran said in a previous post, when the doctors do the catheritization and biopsy they are looking for

Can you count on anyone? Yes we can!

2009-02-03T13:07:00.000-06:00

A special thank you goes out to Kitty Saja and her family. When we needed someone to watch Emma and Grace while we took Allison to the hospital, Kitty did not hesitate to offer to stay overnight with them. I once took a survey where the question was "do you know of anyone that you can count on during an emergency."Yes we can!Fran

Allie and Fran fishing in Lake George

2009-02-03T12:46:00.000-06:00

Hospital Location and Doctor

2009-02-03T12:41:00.001-06:00

This is a link to our doctor. Or should I say doctors. Elfriede heads the team of pediatric cardiologists Click Here

2009-02-03T12:20:00.001-06:00

Our dear family & friends,"With God all things are possible." We've seen this played out through all of you as well as every member of the cardiac team we've met. Allie's spirits are good as in her wishing for a room with "a whirlpool in the shape of an A & a 90"x90" plasma screen TV." She was able to laugh when we joked that the MRI she would have stands for Massive Rearend Inspection.As I

Allison begins her journey

2009-02-02T18:17:00.000-06:00

This is a site focused on keeping family and friends up to date on Allison's progress as she begins her fight against heart disease. You might be wondering why we chose this name for the blog: "Heart of a Warrior." The heart part is easy, Allison has heart problems. The Warrior part, though has special meaning. Yes, Allison is a fighter. She might not look big on the outside but she has has a lot