 I can't believe that it has only been 3 years since God sent Haylie to us!
I can honestly say that this is the first birthday of hers that was almost 100% stress-free for our family. What a blessing to be able to simply enjoy watching her on her special day and seeing how much fun she was having without thinking of the time gone by as much as the beautiful times that are to come.
She celebrated her birthday at Chuck-E-Cheese with most of our family attending and she had a great time playing with her sister, Kate and her cousins. We had Kate's 3rd birthday there, so we thought it only fair to have Haylie's 3rd birthday there too. We lucked out and it wasn't at all crowded, so that made it more enjoyable as well.
We did have a bit of a scare on Saturday morning. Haylie wouldn't wake up and was lethargic when we were finally able to rouse her. I'd no sooner got her to drink her medicine and take a few bites of breakfast, when she got sick. Though she didn't feel feverish, I rushed her to the ER, knowing that for her, those are signs of the beginnings of adrenal crisis. When we got there, she had a temperature of 102.5, but luckily, she ended up being fine with just a shot of solu-cortef. They drew blood, but the doctors never did find a cause for her fever.
All's well that ends well. She remains one of the great joys of our lives!
I am so thrilled with how well Haylie has been healing and with the love and support we've received and continued prayers and friendships that have come out of all of this. We will be joining the Gold Canyon Candle distributors at their August meeting so we can meet them and say our thanks in person. They have been angels to Haylie, along with so many others.
Haylie is my angel and I'm so proud and glad to be able to share her joy.
 Here is a picture of Haylie and her big sister Kate finally being able to play and jump in their Shamu pool (thanks Mom & Pop)!
We are so thrilled that Haylie's surgical physical restrictions are now passed and she can be free to have a normal, happy and active remainder of the summer!
As her mom, I can't tell you the relief I feel knowing that this is behind her and we can now just concentrate on her being a little girl. She still talks about her nurse, Ashley and some aspects of the surgery and trip have stayed with her, but for the most part, she is the same happy baby she was before we left. We will be going back in November, but that will be a very short trip and we're going to try to bring Kate with us as well...we just can't leave her again, it was devastating to us!
We hope all is well with everyone! Drop us a line now and then and let us know how you are!
 Haylie has been doing great so far. We will hit the 2-month mark on July 19th, so we're marking the calendar! She still has some redness, but the days are fewer are farther between when she complains of pain.
Haylie is not happy that she hasn't been able to go out to play at playgrounds or ride on any of her toys or tricycle, but it's been so hot here (over 104 degrees EVERY day since we've been home) that we have to wait until the cooler evening hours to try to do anything anyway.
Our household is getting a bit back to normal too (or at least as "normal" as we are, which is questionable...he,he). Hope you are all doing well. Would love to hear from you to find out how you are. Sandra L....if you're reading this...e-mail me so I can find out how your Nicco is!
Write more soon--all of God's blessings to you all!
Is it me, or is the air cleaner, are the birds singing sweeter, is the sun shining ever more brightly than before? Maybe it's me, but I feel that way, as if the world has allowed me to breathe again after what has been such a long journey for our family and for Haylie.
She is doing as well as can be expected! For the most part we are going through our days relatively pain-free and she's being the same happy little girl she has always been. She and Kate missed each other so much, that they are making up for lost time with lots of kisses and hugs, pulled hair and one hitting the other on the head with a toy or doll...oh the fun of normalcy!
I now feel as though I've been called on a mission to help others and I have all of you to thank for that. We are going to continue Haylioke every year as a CAH Research fundraiser and to also benefit a local family in need of medical travel expenses.
We're also in the process of creating a social awareness venture for Kate called "Katie's Closet". It involved having an armoire set up in hospitals filled with new toys/games/coloring books,etc., to help distract kids in the midst of a hard day while being hospitalized. They had one in the hospital in NY and it was really lovely!
I'm trying to raise the girls to care for others instinctively, as a way of living life, and I think these two projects are a great way for them to feel involved and support our community.
Much love and blessings to all of you! Angela
I do believe that our fundraiser was a success. I can't believe the amount of love and support we received from people in the community who took 4 hours out of their lives, to spend time with us and help us get to New York! We are in awe of your selflessness.
GOOD NEWS TOO--Haylie's pre-surgical labs came back today and all her endocrine levels were wonderful, so if those stay great, her surgery should be able to go ahead without any glitches.
You've already done so much, but I'd like to ask everyone to continue to pray for Haylie's good health. She and Kate are the light of our lives and my world is so much brighter since God gave them to us.
The next week is going to be more nutty for me than the last month, since we are leaving a week from tomorrow. I will try to write once more before we leave, but please know that my sister, Rachel will be filling in as my guest blogger while we are in NY and she will update everyone on Haylie's progress.
http://haylieshope.weebly.com/how-is-haylie-doing-in-the-big-apple.html
I know I've said it a million times, but I really can't say it enough--THANK YOU!
I'm very nervous about everything going well tomorrow. I've had nightmares that there are 20 people who show up and they are all related to us!! I'm sure, no matter how many people show up, it will be fun and help get us to New York City for Haylie.
Haylie thinks that HAYLIOKE is her birthday party and her sister is perpetuating her thought on that!
Being that we've never done a fundraiser before, I'm worrying about all the details and ways to help make our 3 hours as productive and smooth as possible. If anyone has any suggestions, we'd sure love to hear them!
If one or 1,000 people show up tomorrow, we have been so richly blessed by all of the people who've taken time out of their days to say a prayer for us, or to donate time, money or raffle/silent auction items.
I've enjoyed stopping by and talking to all those we've come across about CAH and Haylie. Your interest gives me hope that perhaps when all is said and done, you'll still care about Haylie and CAH and maybe even support research for CAH in the future.
You have a friend with Congenital Adrenal Hyperplasia now!
You have a connection to CAH that you may not have had before, and I hope that compels you keep up with Haylie, as this website will remain up until CAH is cured!
Please keep checking back during our time in NYC. My first priority is Haylie, but if I find access to a computer, I'll try to update you from NYC, otherwise, my sister will be sending updates for everyone who may want to know what is going on.
THANK YOU ALL! We wish you love and blessings always, Angela
I have to say that I've always been a big dreamer. Some of them have come true, others have not, but I've kept dreaming regardless.
Sometimes I've found myself dreaming WAY loftier dreams and than I think are ever possible, which brings me to my point...I had a dream that someone "out there in the hill country" would donate a GRAND-PRIZE item that would be something with universal appeal that everyone (men, women, children waiting to turn 16...) would be interested in winning!
After sending out many hundreds of e-mails, one of them reached Mr. & Mrs. Kee with Destination CycleSports in Kerrville, TX. I got a call on Friday night from Mr. Kee with the awesome news that they wanted to donate a Yamaha Vino Scooter for our Grand Prize in our raffle drawing! I really didn't believe him when he first said it...then I found myself so happy, I could've jumped through the phone and given him a big hug right then!
Saturday, our whole family found our way to Kerrville and we got to meet the Kee's in person (and meeting their dog, Maggie was huge for Kate & Haylie). They couldn't have been kinder folks and everyone who works for them were wonderful as well.
I STILL can't believe that call came in!
I know dreams come true because many moons ago, I had a dream that I would have two little angels. For the last 4 years, I believe in dreams even more, because I get to watch two of them play in my presence every day!
WHAT A BLESSING THIS DAY THIS HAS BEEN FOR US!
We were invited to be on our local morning show KENS-5 "Great day SA" (thanks to Luis Munoz!), and much to my personal amazement and shock, at the end of our segment, Spirit Airlines executive, Michael Pewther, presented us with round-trip tickets for our initial trip to New York!
From comments I've received, I realized that maybe I didn't emote the relief and gratitude that I was feeling inside. I was truly in shock and not expecting such a gift at ALL! Having been severely sleep deprived for many days and a television studio being a new environment, I think it took me a few minutes to really wrap my brain around what had just happened.
I really don't know how we can thank all the wonderful cast and crew at Great Day SA and Spirit Airlines for easing that portion of our worries and giving me, as a mom, some breathing room and less anxiety! Mr. Muniz and Mr. Pewther could not have been more kind and acommodating and we are ever grateful!
Today was an excellent day...God is watching us!
In the little over a week since we began this undertaking, we've come farther than I could've ever dreamed possible. We started out (with the help of my dear sister, Rachel) with our goal and motto being, "We just need a few angels for Haylie".
Just a few angels...
In the last 48 hours, we have been beyond blessed!
Rachel sent an e-mail to a Gold Canyon Candle local director who sent word of our website to hundreds of Gold Canyon Candle representatives and we have received several selfless donations. ANGELS...
KENS-5 "Great Day SA" morning news show, which airs from 9-10am weekdays, is allowing us a short segment on Monday, April 14th to discuss our fundraiser and Haylie's disease. They don't normally do segments such as this, but they happened to have a cancellation and their producer after getting information from Rachel, gave us a small segment. ANGELS...
John T. Floore Country Store in Helotes has gifted us the use of their facility for our fundraiser, and at such short notice, I didn't know how or if we would find a 'home' for our fundraiser. Becca Payne with Floore's was so wonderful when I met with her and they are going way above and beyond what I would ever have anticipated they might! ANGELS...
We've also had several generous offers and hopeful donations for our raffle and silent auction. ANGELS...
I do believe that God has heard all of our prayers and the prayers of those of you who have taken the time out of your lives to think of ours. Your wonderful letters of encouragement have brought me great strength when I need it most....Blessings to every one of Haylie's current and future ANGELS!
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