I know many of you have been following Zac's story since we shared it with you a few weeks ago so I wanted to share the news that Zac is currently in the OR getting his second chance at life! His mom called me this morning to let me know that they had gotten the call around 3am and that Zac had just been taken into the OR (around 8am).
Please say some extra prayers for Zac and his family today they will all need a lot of strength to get through these next couple of days. Also remember to include Zac's donor family in your prayers. The decision that their family has made in the face of tragedy is the only reason Zac will be getting his second chance at life.
If you would like to follow Zac's story more closely you can do so via the link on Ally's homepage. Jodee if you are reading this hang in there Matisse is next!
A huge thank you to all who supported our family today by joining our Angels for Ally team or contributing to the effort of raising yet another huge amount of money, that will no doubt save many lives in our community!!! Over the next few days the total will be complete. There is still time to donate, if you like.
Today as we walked, we remembered and took time to honor our donor families from Texas and Michigan, both of which have provided Ally the Gift of Life! Without their decision to say "yes" to donation, Ally would not be here today. We also honored our little buddy Logan Davis who passed away in December from complications after his transplant. His mom also flew in from Ohio to join us in our walk.
We had a very busy weekend with the walk, having friends from Pittsburgh in town, and just making time to enjoy each other as a family.
The event today went very well. The team was well represented with many of our friends and family. Having so many people attend an event like this, makes it difficult at times to just get a quick hello into some of the team members. If we missed talking or catching up with you, please forgive us! We were being pulled in many directions today.
Ally's day was fairly good. When we arrived at the event and she had seen the amount of people, the first thing she said was "go home"! Ally does not do well with large crowds, alot of attention, and hates loud noises. Most of this is due to being confined to a hospital setting for so long. Something we will need to work on over time (as well as many other things).
The think worst and most terrifying moment of Ally's life did happen to her today. Some of you were witness to it. As the walk was about to start, Ally was sitting in her double seated red wagon, with her back to me, when all of the sudden out of no where came the Philly Phanatic. Without realizing Ally was seated in the wagon, the Phanatic jumped right into wagon. Remember Ally is in the wagon, so that meant he was sittting on her with his belly covering her. If Ally would of just seen him from a far, she would have be terrified, but to sit on her, well I thought she may just need a heart transplant! I quickly gave the Phanatic a push and wisked Ally away from the scene! It took about 15 minutes for her to calm down and remove the hands from her eyes. The poor kid can never just have an uneventful day!
Anyway, the rest of the day went well. Weather was cool, not to hot, and no rain!! Jill, Ashley, and Ally left tonight to go back to Pittsburgh, so I'm sure the girls will be exhausted tomorrow from the long day today.
We will update with photos in the next couple of days. If you were at the event, and captured some photos, please pass them along to us at firstname.lastname@example.org. We would love to include them to the website.
Thank you one more time to everyone for such a huge effort to Angels for Ally and the Gift of Life! You are all truely the best friends and family one could have!
Next year, we have some bigger ideas for the event, so plan now to mark the calendars to join us again in 2009!!!
Thank you so much to everyone who has joined or contributed so far to the Angels for Ally team! There is still time to make your donation. Remember, every dollar counts. The link is on Ally's homepage. You can donate to by clicking Shane's name, or by joining the team Sunday!
The schedule for the Gift of Life Walk/Run this Sunday 4/20 is as follows:
If you want to Register at the event and not online you can. The times for open registration are 8:30-10:45a.m.
5k runners need to be at the art museum by 9:45a.m.
10k runners need to be at the art museum by 10a.m.
Walkers, we would like to have you there by 9:30a.m.-10:00a.m.
Walk begins at 11a.m.
If you want to be part of the team photo, we are scheduled for 10:30a.m. We would love to have as many people in the photo as possible. Please try and arrive as early as possible.
Angels for Ally t-shirts
If you have not gotten your Ally shirt(s), don't worry... they will be available at the event. If you have not emailed your sizes to us, please do so at email@example.com
If would like to pickup your Ally shirt(s) before the event, they will be available for pickup at our house between the following hours:
Friday (today): 3p.m. to 7p.m.
Saturday: 10a.m. to 4p.m.
Please call first: 215-234-9686
Address you can map to for directions:
2500 Deep Creek Rd.
Perkiomenville, PA 18074
Team colors are Black & Gold!!
As for how Ally is doing ...well she is healthy enough that she is going to be there at the Gift of Life event!!!! Ally missed last years event because she was extremely sick and in the hospital. For some, Sunday is your chance to finally meet our little angel for the first time!
If you have not thought to contribute, or cannot join us, please at least keep our little buddy Zac Johnson in your prayers. I know all your prayers in the past have healed or gotten Ally this far, and now our friends the Johnson's need your help! You can follow Zac's progress via the link off of our site. Let them know you are praying and thinking of them. They really need our help!
Not too much to report since my last update. Ally has remained at home and seems to be doing great. She has had a busy week of appointments with PT and OT, transplant, and she also got fitted for some orthotics or possible braces that her PT had recommended she get. Otherwise the weather has still been beautiful so we have been on a lot of walks.
Today Ashley had a playmate over and then her friend's mother invited us all over for dinner. She also has a younger sister so Ally got a chance to play with her a little. It is always nice to get out and do something normal. Ashley's school is planning a trike-a-thon event to help raise money for our Ally's Angels team. The event will not take place until May but the sponsor sheets will be turned in next week so that the money raised will count towards our team at the Dash for Donor Awareness.
I am so thankful to have found Ashley's school, they have been such a wonderful support system for both Ashley and myself and really to Ally too. They have helped to make things so much easier for all of us. This month her class is learning all about their bodies so it goes perfectly with talking to the kids about organ transplantation and why they are participating in this event. The kids are already very excited and have been asking their teachers a lot of questions.
All that being said about organ donor awareness, I have a great story that shows how many people in this world still have no idea about what it means to wait for an organ transplant. Yesterday Ally's equipment company sent someone out to deliver oxygen to us. Now this guy is definitely familiar with seeing people with a variety of medical problems. So he asks me about Ally and I say "well she is trached but her main issue is that she had a multi-organ transplant this past summer that she is still recovering from.I then proceed to tell him what organs she had transplanted and he says "well why did they wait till she was four and not do it when she was a baby? Were they waiting for her to get healthier and stronger?"
By this point I must be looking at the guy like he is crazy! First of all no one that I know gets stronger when they have end stage liver disease and a bowel and stomach that do not even function!!! Second, has this guy never heard of people waiting for an organ transplant. So I say "well she was on a waiting list for over a year and a half." His response, "there is a waiting list for something like that?" (apparently he has never heard of this)!!!
This story is exactly why the Dash for Organ Donor Awarenss is so important to us (and by us I mean all of us). There are currently over 98,000 people on the transplant waiting list in the United States. Everyday approximately 18 people will die while waiting for organs and almost everyday I encounter someone who does not know the first thing about organ donation. We are talking about something there is a cure for and yet still people are dying.
If you are still planning to sign up for the walk make sure you do so before April 14th. After that date the registration fee will be increased from $25 to $30. Click on the Ally's Angels link that is located on the homepage or go to www.donors1.org to register. Thanks to everyone who has donated to our team and to all those that will be joining us. We have almost reached our goal of 120 team members!
Just a super short update to say that Ally did come home, again. She never really did have an additional line infection all of her repeat cultures stayed negative. She came home on Saturday and we have just been busy with appointments and getting out. The weather in Pittsburgh has been gorgeous the last three days so we have been out a lot.
I will update again before the end of the week, or at least I will try.
Okay, if you thought I was frustrated last week that pales in comparison to how I feel right now. I don't think there is enough silly string to make me feel better. I will warn you this will be a long update. Where to begin...
Around 7:30 last night Ally was discharged from the hospital (Please hold your applause, rule number one, always keep emotions in check when dealing with a chronically ill child!) After three days of negative blood cultures I was sure Ally was good to go. Afterall she will be treated with IV antibiotics for 42days so that should definitely equal about 6 weeks out of the hospital, right? WRONG.
3 p.m. my phone rings (rule number two and this one I am going to start following more! If your chronically ill child is with you and a call comes from the hospital, DO NOT ANSWER! There is nothing wrong with screening calls and then playing dumb and saying you never received a call!) When I answer (stupid me, forgot rule number two) I hear, "okay, just remember I am only the messenger!(already a bad sign, I knew I should have thrown my phone out the window) Ally's blood culture from yesterday is positive you need to bring her in to be admitted for a different IV antibiotics. Come to admissions around 4!" Are you kidding me NO, NO, NO!!! Now the tears start. Oh yeah, did I mention Ashley is in the car the whole time so now we are both crying. Hang up. Curse, curse, curse!!! Ashley crying and saying "You told that doctor no, right mommy? I don't want Ally to go back to the hospital. It is not fair!"
Seriously, this is our life and today it was not fair, not fair, not fair! Trust me I am so grateful just to have Ally and Ashley but come on, we need a break! The plan now is to add another antibiotic and get more cultures. That is it, still not symptomatic but we have to stay until we get a negative culture. Oh yeah and it is the start of the weekend which translates to us having to stay at least until Monday.
Okay I am done complaining. If you did not get to read my donor story earlier this week be sure to read it. Besides it puts into perspective what I am really trying to say here, that my life is crazy but I will take it anyday as long as at the end of the day I have my girls.
Thanks to everyone who has signed up for the walk we are now up to almost 100 team members!!!
April is organ donor awareness month and I thought it would be nice to start the month off with another story about organ donation. However unlike the other stories I have shared with you, this story comes from the donor's family. I hope this story will honor the memories of Chad's life and bring to light the wonderful person he was. Ginny, Denny and Nikki, thank you all for letting me share Chad's story.
On April 30th 1998 on his way to work Chad was involved in a car accident and both he and the driver of the other car were killed. Chad was just 19 years old when he died, a life cut way too short.
I have lots of memories of Chad from when I was a child. His mother and my mom have been best friends since grade school. I remember endless shopping trips (definitely our mothers ideas), summers at the pool, and one trip to a water park. Mostly I remember Chad loving the outdoors. Whether it was hunting, fishing, camping, or just hanging out, Chad was always outside. In fact I can still picture him running around the woods behind his house. I think the only memory I have of Chad inside is of him in school in a weaving class that we had together my senior year in high school. Knowing Chad, school was probably about the only time he spent indoors.
When Chad was 16 he got his driver's license and he made no hesitation in checking yes to be an organ donor. His mom asked him are you sure you want to do that and Chad looked at her as if she was crazy and said "sure, why not?"
Chad's words are so simple but so true. "Why not?" Why not change someone's life for the better? Why not give someone else a second chance at life? In the end, when the doctor approached Chad's family about donating, there was really no decision to be made. Chad had already done that for them. Chad's mom said "he never questioned it and therefore we never questioned it either."
Chad was able to donate bone, bone marrow, skin, and ligaments. His corneas were also donated and his family has received letters from both women who received these. The letters stated how grateful they were for the decision Chad and his family had made to donate. They also said that they thought of Chad everyday. Chad's parents said that they felt both proud and happy that their son had made someone's life so much better.
Chad's story definitely shows us all the importance of organ donor awareness. Had Chad's parents not have discussed organ donation with Chad prior to his accident they would have had no idea how strongly Chad felt about organ donation. Perhaps they would have made a different decision about donating. Please remember to talk to your family about your wishes to be an organ donor. If it is marked on your license that is great, but your family ultimatley has the final decision to make. Let them know how important it is to you that they carry out your wish to be an organ donor.
Thank you Chad and Happy 29th Birthday!
If you have not done so please sign up to participate in the Dash for Organ Donor Awareness. You can click on the Ally's Angels link that is on the homepage of this site or go to www.donors1.org to sign up under Ally's team. Time to sign up is running out. As of now the registration fee is $25 but it will soon be increased to $30 for all those procrastinators. Also remember to send us your shirt size so that we can order you a shirt with the Ally's Angels team logo on it. Email shirt sizes to firstname.lastname@example.org. We have youth xs to Adult 2X available. We would like to place the order for shirts on Friday so please try to get your shirt sizes to us by Thursday. Also if you can not participate in the walk you can still donate to the cause. Click on the same link (Ally's Angels) on the homepage and the you can donate under Shane's name on the team page. The website is secure so all credit card info is safe. Also if you make a donation and you would like an Ally shirt please just let us know. If you have any questions please email us.