HardyHacienda.com

Leukodystrophy in the News

Aaron — Sun, 15 Aug 2010 22:36:28 +0000

I saw this story on the local news and thought it was a great opportunity to share this cute guy’s story and raise some awareness of Leukodystrophy. He is also undiagnosed. These kids have such amazing strength!

Video Courtesy of KSL.com

Father’s Day

Holly — Sun, 04 Jul 2010 19:39:35 +0000

I am finally motivated enough to get our Father’s Day pictures up. We had a great weekend starting with a picnic with Aaron’s fam and then a Sunday dinner with my fam. Aaron wanted a long nap and a day of games for Father’s Day. He’s an amazing dad to Brinley and just loves her so much. I think I hit the jackpot with him as my husband!

Father’s Day 2010

And just for fun some of my favorite Aaron and Brinley pictures…

Kevin and Tracy Get Sealed!

Holly — Wed, 09 Jun 2010 05:15:43 +0000

Well I must be setting some kind of record because I do believe this will be two posts with new pictures in one week. Woot! This week was a particularly fun and eventful one. We had the chance to go with Tracy and Kevin to the Manti temple to be sealed (see pictures Kevin and Tracy Sealing). I loved seeing my little sister get to reach her goal of being sealed to her hubby. I want Tracy and Kevin to know how proud I am of them for getting sealed on their 1 year anniversary, which I know was a big goal for them. They are both amazing people and I’m glad we get to live near each other. I’m very lucky to have sisters who are my closest friends (you know I wouldn’t leave you out Katie) and they both mean the world to me. I’m proud of you Tracy!

Some of the highlights of the sealing day were….

1) Brinley was at home with Grandma

2) Road trip to Manti with Katie and Spud

3) The perma-grin Tracy and Kevin wore all day

4) Going to the temple with my family

5) Witnessing the sweatiest bald head I’ve ever seen in person (yep that’s you Kevin)

6) Pizza Pie Cafe buffett till I puke

7) Playing sports late into the night with the Clarks

8 ) Finally going to bed absolutely exhausted

Spring Time Photos

Holly — Thu, 03 Jun 2010 21:08:32 +0000

Now that Utah is finally getting temperatures above freezing and the snow has taken a hike it really feels like Spring! Which means it’s time to post some pictures from the last few months. I know I’m really behind… I could blame it on the computer which doesn’t think our memory card exists, or the crappy weather failing to motivate me, or the nice weather really failing to motivate me, or my floppy mcflopster child who doesn’t like mom to have a break, or the fact that our lives are just so boring there seems to be no reason to hurry,or I could just admit I’m lazy. The photos are called Spring 2010 and have the usual 95% Brinley photos with a few standouts such as discovering Katie’s hair, standing up (sort of), trying to pull off her bow and getting her glasses instead, G tube surgery, standing on grass, playing with a bowl full of stuff (her way of exploring so the OT says). Also pictured are some Mother’s Day photos. I especially like the one of Aaron flipping a pancake in the air. The breakfast was part of his Mother’s Day gift. He’s so good to me! Anyhow enjoy and I’ll see you in another half year for more pictures!

Can’t Get Enough?

Aaron — Mon, 24 May 2010 04:05:02 +0000

For all you who just can’t get enough Hardy Hacienda (and haven’t figured out what an RSS reader is), you can now subscribe using exhibit A there on your left. See that? Go for it. I dare you.

We’re Home!

Holly — Fri, 14 May 2010 03:11:47 +0000

Our hospication has come to a close. We were so glad to be back home! Brinley calmed down so much once she no longer had nurses and doctors poking and prodding her all day long. She seems to be recovering well and getting used this new tube attached to her. I’m only feeding her a little through the tube right now but she thinks I’m playing with her whenever I do tube feed. She starts laughing and blows bubbles up through the syringe and then thinks that’s really funny and causes more formula and bubbles to come up. Doing this over and over again does make it a slow process, but at least she enjoys it. Here’s a photo of her new tube and I’ll have more in our photo album later.

Why Hospication Rox My Sox

Aaron — Wed, 12 May 2010 15:39:34 +0000

Top ten reasons why hospication rox my sox:
(10) We get all the lights and sounds of a casino without the smoke.
(9) We never have to worry about bad weather ruining our hospication.
(8) In case of an emergency, qualified personnel is always an earshot away.
(7) Friends and family get to participate and bring treats.
(6) Wi-fi is always available.
(5) A restaurant is always within walking distance. Nay, even within our living quarters.
(4) Every two hours, day or night, someone checks in to see if everything is okay.
(3) Room service comes standard for at least one of us.
(2) Upon return from hospication, I can flash my wristband and brag about being a VIP of my favorite band.
(1) We’re guaranteed to have a better time than at least one other hospicationer.

Mother’s Day

Holly — Sat, 08 May 2010 02:27:02 +0000

Mother’s Day is right around the corner so I thought it would be a good time to send a shout out to my Mama. I think I have the most awesome mom ever. She’s made so many sacrifices for her kids and as I’ve gotten older I’ve come to appreciate all that she did (and does) for us. As she went through her back surgeries I saw her time and again limp in the door after work in order to help provide for our family. She worked until her body just couldn’t handle it anymore. I love that she lives nearby now because with everything I’ve gone through with Brinley I’ve needed her for emotional strength (and for the free babysitting). I always had a hard time saying goodbye to my parents when they lived in South Carolina because I knew it’d be a long time before I saw them again. Having my own child has helped me to see how much my mama really loves us. I know she loves being a mother although I’m sure there were times we made her want to run away. What makes her so fun is her sense of humor. Everyone of my friends that has met her thinks she is hilarious! I’ll never forget as a teenager my mom singing along with a popular hip hop song on the radio just to get a laugh out of us. By far the most admirable thing about my mama is her spiritual strength. I can honestly say I have never once doubted her testimony and love of Christ. I don’t know if I’d be who I am without her example. She always called us together for prayer, scripture reading, fhe, and was never hesitant to share her testimony. Happy Mother’s Day Mama and thanks for being so great!

Latest on Brinley’s Health

Holly — Wed, 14 Apr 2010 03:53:13 +0000

Many of you know we had another MRI done on Brinley’s brain last week. This was a follow-up to the one done in July. Her neurologist wanted to see what has changed over the last 9 months. This would lead us to know if there’s other testing to be done and give an idea of what we’re facing at this point. Today I met with the neurologist and he told us there was very little change in her production of myelin. One part of the brain did have more myelin but not much. Now this can be seen as both good and bad. We obviously would hope that more myelin would develop and put her into a different category than leukodystrophy. The good part is at least she hasn’t lost any. Keeping the strength she has and most of all keeping her well and healthy are the goals to a longer life span for our Brinley. We also visited her physical therapy doctor at the hospital and she decided it was time to start Brinley on some medication for her sensory disorder. She doesn’t like new things touching her (see the Easter basket pictures) and others touching her(especially her hands). She also has major issues with anyone other than Mom or Dad even approaching her. If you’ve been keeping up you know we’ve tried the SPIO suit and the weighted blanket but neither seemed to make a big difference. This medicine will hopefully calm her a bit and make it easier to visit others and see doctors.

And the last bit of news…we’ve decided it’s time for a G tube for Brinley. She’s been struggling with feeding lately. She doesn’t want to eat or she gags when we try and feed her or she eats off of some hard food but then bites into it and chokes. We’re thinking having the G tube will allow her to get her nutrition and take the stress of trying to eat away. Brinley also never got the hang of chewing. This will allow her to use more of her energy to growing stronger physically. She also needs tubes in her ears so we’re hoping to do all of that during the same surgery which will be on May 11. She’s going to be a busy girl this summer! Thanks for all the support and prayers. We really feel them everyday in our lives.

Brinley in her Easter dress. Notice the gigantic feet…

Easter and More

Holly — Fri, 09 Apr 2010 04:18:08 +0000

I have some new pics up in our PHOTOS section. They are under March 2010 and also Brinley Standing has some new ones. Also some of our Easter pics are in March 2010 but not her Easter dress pictures because we went to Aaron’s parents and I wasn’t prepared with a charged battery. You’ll notice the major fit Brinley’s pitching when she’s looking at her Easter basket. It’s because she was scared of every single thing in it. I know…soft toy balls and flexible bunny rabbits are so scary. The worst of all was the grass in the basket. She cried and cried until we got it off her hand. It was really funny! We had a relaxing Easter watching conference, eating lots of food, and tormenting our child with new toys.

You may also notice some of Brinley’s new therapy equipment. She has a neck support that looks like a life jacket to wear in her stander and red chair. This was really scary at first too. I think she thought it was choking her because she was hyperventilating and then screaming her head off (she freaked out so much she even pooped her pants!). By the end of the day she was wearing it and having a good time in her stander. The other thing is the large tray she got to go with her red chair. It’s nice for her to play with her toys on and she seems to find the tray itself quite intriguing.