Coach Pink

It has been a year after being diagnosed and Red is moving on to jr.high. The nurse informed me that they are trying to get an AED for the school. She also told me there is another student in the school that has LQT. Red is able to do P.E. with just a few restrictions so he is happy about that. During the second week of school he was approached by a teacher/coach who asked him to play on their flag football team. Red was hesitant to tell him about his heart condition because he thinks having this condition makes him "weak, different, special needs". So after putting this teacher off I finally spoke to the coach myself. I informed the coach of his diagnosis and that he couldn't play. The coach could see Reds love for football and said he would still like to have him as part of the team so he asked Red to be the assistant coach. Red told him he would think about it.

Since being diagnosed with Long Qt Syndrome last year Red has struggled with the physical restrictions he was given. Red loves, loves, loves sports. He has great football & basketball skills so it has been very discouraging and frustrating for him not to play. He felt like if he couldn't play he didn't want to be part of it. So it was a great surprise to me when he accepted the invitation to assist the coach.

As an assistant coach Red is the offensive coordinator while the coach handles the defense. I asked Red if the coach tells him what to teach and he said "No I already know what to teach them". That's my boy!! Red is excited to share his knowledge with the players. He is loving that the players call him Coach Pink and I am sure he likes ordering them to do push ups or sit ups too. I am so glad that he has accepted this challenge. I hope that this experience will help him to see he can be part of the team without being on the field. I am thankful for a good teacher who didn't focus on what Red couldn't do but on what he could do.

Red is absolutely a leader. No matter what school or group of kids he hangs around he is well respected and liked. I think that he can be a positive influence and motivating to those around him. I am thankful for a good teacher who saw his potential and made a place for him. He still gets frustrated and saddened by having LQT but this is a great start of something new. I am very happy at the confidence and satisfaction that Red gets from being part of this team.

CPR/AED Training

Tommye from CPR Solutions donated a class to train our family in using the AED unit and CPR. One of her partners, Janet actually taught the class and did an awesome job. She really made sure we would all be prepared if Red or any one of us should have a problem. I have taken CPR a number of times but learned several new things from her. We practiced on the manequins and we acted out emergency scenerios. Even Grandma got into it.

Laugh of the day:
Instructor: What will happen if you blow too much air into a small child.
Red & Xave: (After a long 'thinking' pause in a serious tone)....They will fart
Instructor: HAHAHAHAHAHAHAHA.....I never heard that one before.
Instructor: The correct answer is they will probably throw up.

We hope to never have to use these skills but glad to know we are prepared just in case. We appreciate the time that Janet and Tommye donated for this.

Life Saver

I posted a few weeks ago that a generous man, Jeff Zeiler had donated an AED for Red to have at school. Well I was contacted by Jonh Rittenburgh this week who would like to donate one for him to have at home. It is the top of the line unit $2400. I was so surprised and grateful I couldn't think straight. This news came at such a good time because I had just gotten the prescrption for him to get one through our insurance but found out that we would have to front the money and then hope that the insurance would pay us back. I spoke to John for 30 minutes and the concern he expressed for Red was so genuine. I am just so overwhelmed at the kindness that strangers have shown to our family. We didn't go out looking for help but through the kindness of Ron's co-worker and her passing our story onto to Michelle at American Heart Association this is what has come of it. These people are amazing!!!

The manner of giving is worth more than the gift.
~Pierre Corneille, Le Menteur

Wii are so THANKFUL

I love family! When my sweet cousin Kami heard about Red's health problems she organized a group effort to purchase a Wii for our family. You can imagine how surprised we were when Uncle Mike walked in with it. Red had been asleep but Becka quickly woke him up. Red later said he felt so happy that he thought he was dreaming, it was just too good to be true. We were leaving to Utah later on that day so of course it had to go along with us. Clifford, Danny and Nicky helped my kids break it in...way fun! It really impressed me that Kami a young college student would be so thoughtful and generous to her younger cousin. We appreciate everyone who contributed to this gift, Thank you very much!

UPDATE

Red is getting used to his medication and we are seeing few side effects. The biggest thing is that he feels more tired than usual. He is adapting well to his physical restrictions as well. His teacher and PE coach have been great so far. I check up on him at recesses every now and then but he is usually just trying to look cool sitting around the picnic tables. His best friend Tevita has been at his side the whole time, this has really been good for Red. The more I research this syndrome the scarier it becomes. It is like a ticking time bomb and we don't know what will trigger it or when. All we can do is have faith and turn it over to The Lord (advice given to me by my mom-Thanks).

Since school started we have been struggling with the school district to get an Automated External Defibrillator put in the school Red attends. During this time one of Ron's co-workers heard about our struggle and contacted a friend who knew somebody who knew somebody on and on. We get a call from the area Rep for American Heart Association who says there is someone who wants to donate this $2000 machine to Red. There is also another company willing to donate classes to our family so we can all get CPR and AED certified. This has just been amazing! We never expected this at all. We feel so blessed. The good thing is that the person/company who is donating the machine is very involved in promoting AED programs in schools & communities and wants to bring some press in on our story. Maybe this will bring some attention to LQT and the need of these life saving machines in our grade schools. Currently AED's are in all of the jr highs and high schools in our district. So I ask why is a Jr High or High School students life more important than one of an elementary student. I never saw myself as an activist but I am all over this. Stay tuned for more updates! ~Thanks for all that everyone has done to show support to Red. Your cards, calls and prayers have all been greatly appreciated. ~

Permanently Benched

In July of 2008 Red was diagnosed with Long QT Syndrome. He was getting a sports physical when our primary care physician thought we should have his heart murmur checked out. So we went to Phoenix Children's Hospital about a month later. He had an EKG and the Dr. said it looked like he had bigger problems than the innocent murmur. So the next week we took him in for a stress test and echo cardiogram. Red was diagnosed with Long QT Syndrome. This is an electrical problem with the heart that causes an abnormal rhythm. For more information go to http://www.sads.org/.


As his mother my heart dropped. So much to take in at once....unbelievable. But it wasn't until Red heard "No Football" that he began to worry. OK he freaked. We were just kind of in shock for awhile. This diagnosis came two days before Red was to start football. He could no longer play.... he was permanently benched.



It is a serious heart condition so his physical activity is very restricted. As you can imagine he is devastated. He really did well in football last year and was excited to strengthen his skills. He and his best friend, Tevita are inseparable so it has been hard for him to watch Tevita play. We suggested that he be a team manager or assist the team in another way. But he wants nothing to do with it if he cant play. So what will I do with this boy whose energy level is already overflowing? How can he let loose of this energy if not on the field?



We are encouraging him to choose an instrument he would like to learn to play. He said if we got him Guitar Hero he could learn to play the guitar......I think NOT! Red is also trying to convince us to buy him the Wii. He feels like he could still play football that way. Can you tell what a joker this kids is? Cousin Kami suggested he takes up theatre she even invited him to be in some of their family productions/music videos. I am sure he could be a great asset to them, he is full of drama. Red will do well in whatever he decides to do because that is just what kind of kid he is. Once he deals with this reality we hope he can find the positive in it. We will be going to The Sudden Arrhythmia Death Syndromes Foundation (SADS) this week in Utah. We are hoping we can find more information on this syndrome and ways of coping with it. We are sad but feel blessed that this condition was diagnosed before it was too late. Thanks for your support!