1. silent auction
2. regular auction
3. dinner/tea/brunch
4. walk/run
5. straight donation to bank
6. other suggestions
What would you participate in?
1. silent auction 2. regular auction 3. dinner/tea/brunch 4. walk/run 5. straight donation to bank 6. other suggestions
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Well we have been going strong for a couple of weeks now. All three of the kids made the baseball/softball all-stars teams for their age divisions. Kyra has practice four days a week for about two hours a day. We have crazy busy schedules until the end of July. No complaints here though. I love this time of the year, minus the Texas heat. We found this new drink, since Gatorades have an adverse reaction with Kyra. Its called Neurosport. Personally, I think it tastes horrible but Kyra loves it! Guess that's good since she responds well to it. Its sodium and potassium levels are almost equal but it has other minerals in it to help replenish fluid loss due to sports. She had a tournament last weekend and played four games in about a 24 hour time frame with no complications. I did give her an extra 1/2 pill of hydrocortisone (2.5 mg) and she drank the Neurosports drinks, only 2 of themthou Yesterday's walk was a SUCCESS, thanks to everyone who participated, the walkers, vendors, and volunteers! I appreciate all of you taking the time for my daughter! We were honored to have not only Kyra there but also another young lady who has been fighting Addison's for four years, Jennifer.
Today, we let Kyra sleep until she woke up on her own, which to my surprise was around 11. I fully expected her to sleep the majority of the day especially after completing six miles yesterday. Today, she has a dress rehersal at church for her program then immediately after the rehersal is the play. We are trying to make this a low-key easy kind of day for her as this next week After giving Kyra a mild stress dose (1/2 pill) extra yesterday afternoon to help with her "sleepiness," she seemed to perk up and played a great softball game. Today, I recieved a call from the school telling me that she had just come in from recess where she had been running and her resting b/p was 106/49 & HR was 100, standing B/P was 90/40 and HR was 118. It is days like this that make me wonder if she is sick or is this the new "normal" that we have to get used to.
Or the starting line..... We are on the countdown to the Walk. I am looking. forward to a successful event. I still have lots to do to get ready to make sure that everyone has a great time...
This is going to be a fun week getting everything ready for the walk and six baseball/softball games too. At least the college semester is over Almost walk time..... With the busy schedules, we have managed to work on the walk also. Here are a few of the things accomplished this week.
1. mapped out route 2. concession stand 3. vendor for concession stand 4. shirts ordered 5. PA secured 6. looking into silicone bracelets.... (What do you think?) 7. had water donated (YEAH!!!!) 8. volunteers!!!! WOO HOO!! Slowly but surely we are getting ready.... Still lots to do. HOPE YOU CAN MAKE IT!!!! I just noticed how long it has been since I have been on here. Sorry for the long pause... A brief update... Kyra has been fighting an ear infection for about two weeks now. She still is stress dosing and has the cough and congestion but it has not slowed her down much. I have to hand it to her, she is a trooper, not willing to sacrifice much just because she has this disease. She, and us, are determined to have as "normal" of a life as she can. I know waking up at 6AM every day to take meds and having to take her meds with her anywhere she goes along with a blood pressure machine and her watch that takes her heart rate is not all that normal but hey, we are still playing softball and being able to be a kid. Who could complain about that?!? I feel that I am truly blessed to have such a strong young lady as a daughter!!
As you know, today is Mother's day, a day that is extremely hard for me because I lost my grandmother on mother's day when I was 12. However, my children and my husband have made this day REMARKABLE for me today and I know that God has blessed me with a great family! I hope that each of you have been as blessed on this Mother's day. About the walk: Its only TWO weeks away!! So much to do and take care of to get ready for it!! I am so excited that Kyra has decided to do this to help others. There was never any hesistation about it either. She simply said; "We are doing it" and as you can see, its getting done. Guess she is a little spoiled. Ha, ha, ha. Not really spoiled, more like persistent. "Ha, ha, ha... Real funny mom" Kyra hacked me. Well my supper is cooking and I am taking a break to type this blog. Guess I better get back to my cooking. Until next time. Angela Sorry, it has been a crazy week for us. Kyra has had a few days where she was just completely exhausted, so much so that I contemplated taking her home from school to rest. Instead of going this route, I tried something new. After school, when she was still exhausted, I gave her a little extra hydrocortisone. In about 30-45 minutes, she was wide awake and full of energy, so much that she played a complete softball game. Today was a little better for her regarding her tiredness. We follow up with the endocrinologist on Friday and get the bloodwork results then.
Wishing everyone a Blessed Easter! Remember the true reason that we celebrate Easter. Its not the eggs or bunnies but the almighty savior, Jesus Christ, who in "Living, He loved me, Dying, He saved me, Buried, He carried my sins far away, Rising, He justified freely forever, One day He’s coming, Oh glorious day, oh glorious day." (Glorious day by Casting Crowns) Not only did Christ do this for me, but for you also and the entire world. There is another song that says it wonderfully, "While He was on the cross, I was on His mind." The KYRA Foundation was asked to join efforts with the NADF's AAA team in educating and creating awareness for Addison's disease, in the hopes of saving lives. We are looking at pictures prior to diagnosis and post diagnosis, re-evaluating the information presented to the public, physicians and emergency rooms. We are trying to think of different promotional items that we can put a brief message on adn distribute, such as mouse pads, water bottles, lanyards and such. Any suggestios?? What would you like to have?
* The shirt backs are done and looking great!!! We are truly blessed to have so many friends who are able to help us out!
* Kyra has been doing great, playing softball, pitching lessons and practice. Her desire for life has returned as has her attitude. Ha, ha, ha. Its amazing the difference in her since we have returned from San Antonio. * On an off note, we have a quaker parrot that has showed up at the house. We are trying to get him in the cage with the one we already have. That should be fun... ** Walk signs are being posted around town. I am hoping to be able to place some more out in surrounding towns as well. Don't forget to REGISTER before APRIL 30, 2011. After that date, a late fee will be charged of $5 and no guarantee on the shirt on the day of the event, m |
AuthorAngela, Kyra's mom. Archives
May 2016
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