Ben Gets Feeding Tube

So proud of Ben for being brave enough to undergo the surgery to have a feeding tube placed yesterday. With the disease he has, ataxia-telangiectasia, it is very difficult for him to swallow properly and he is not growing like he should. Even though it was a hard decision to make and the recovery has been painful I know it will be worth it in the end (hey! and he has had unlimited electronic time at the hospital) so it will all be worth it!!!

 

Rachel's 1st Dance Recital

Rachel's 1st dance recital. Thank you Noelle Larson for giving our girls such an awesome experience and for being such an amazing Sunbeam teacher to Nate!

 

Happy 14th B-Day Ben & Bekah!!!

Happiest 14th birthday to Ben and Bekah--the coolest twins that I know !

 

A-T Caregiver Conference

 Last weekend I had the amazing opportunity to attend the ataxia-telangiectasia (A-T) caregiver conference in Chicago with my good friend and children's speech pathologist, Jen Putnam. As I have 3 children that are battling this disease I was so grateful to be there to learn more and see so many of my friends who fight this same battle. The things that stuck out to me the most from this conference are:

1. A-T kids are just normal inside. What they struggle with is their input and output abilities. They just need a little more time to accomplish what their peers are doing and often need assistance in performing school work or other tasks. The one input that is not affected by A-T is their ability to hear.

2. The mortality age for our A-T kids used to be 18.5, but due to life improving therapies and understanding of the disease the average mortality rate is now 25 years of age.

3. The 3 main reasons that we lose our A-T kids are:

1. Lung problems (due to their compromised immune systems many of our kids face recurring infections which lead to lung damage and can eventually take their life; they also can have struggles with aspiration when eating)

2. Nutrition (due to their swallowing struggles A-T kids often struggle with the ability to swallow or they are using up all of their calories in the eating process; this is where the feeding tubes have been an invaluable blessing in so many of our children)

3. Cancer

4. They are no longer recommending the rubella vaccine for A-T kids as they have found this vaccine in granulomas that were present in these children

5. Back in March our children were diagnosed with “mild” A-T which typically means that A-T will have a more mild course. Mild A-T is rare in the United States, but more common in the UK & Ireland (that was very interesting to learn as Larry and I have a strong heritage from those countries). Mild A-T for our family means that instead of having 2 severed A-T genes, one of the genes is a missence gene and they are likely making some of the ATM protein that most of the kids are missing.

6. Genetic science is moving at an increasing exciting rate and there are some very exciting things in the works.

The most important thing I took away from this weekend is how blessed I am to be surrounded by so many wonderful people in the A-T community. I have a great respect and love for each of you.

Happy 7th Rachel!!!

 

Happy Birthday (July 6th) to our Minnie!!!

Trek 2017

3:30 A.M. at our house this morning. All dressed up and ready for 3 days of trek in Mosida UT. This is the same place that we did a family day Trek with the Ward family and Spencer's cousin Joshua Ward was baptized in the river there. So excited for them to have this experience and feeling so grateful that all of them are physically able to go.

Baylor's Birthday!

It's always good to have your good friend around on your birthday! Ben and Baylor have been good friends since they were little. Happy 13th birthday Baylor!

Rachel's Feeding Tube

 

Rachel had her surgery at about 11 this morning and everything went really well. We think her fever last week was likely caused by the wipes they had her wipe down with right before surgery last time. We didn't use them this time and everything went smoothly. She started her first feeding through the tube a couple of hours ago and if all goes well she will be released tomorrow. Thank you for your continued thoughts and prayers.

Rachel's Feeding Tube

About 4 years ago I started looking into getting a feeding tube for Rachel as she was not eating or growing right. Rachel is now 6 and struggles with energy, slow growth, and her ability to eat. Lately she has been telling me it hurts to eat. I finally got the courage up to schedule her to get a feeding tube thanks to all of my A-T family that shared their own experiences and the positive results they had experienced once they got their child a feeding tube. Most of them wish they had gotten one sooner. When Rachel found out she was getting a feeding tube she went into her bedroom and made a countdown calendar (this confirmed to me that we had made the right decision and it was a bitter/sweet moment). Rachel was scheduled for surgery last Friday. We drove up Thurs. night and stayed the night. She had a little bit of a runny nose (something that is not unusual for Rachel) and was dancing around at breakfast that morning. We got to Primary Children's hospital where she was admitted for her surgery. She was dressed in her hospital gown and we had visited 2 of the 3 doctors in preparation for her surgery when out of the blue her cheeks went bright red and she spiked a 102 degree fever. It was so disheartening to be so close and then have it all fall apart. With A-T their immune systems can be very fickle and I believe that was likely the cause of the quick change in her health. She is scheduled for surgery again on Feb. 10th. Your faith and prayers in her behalf would be greatly appreciated. Once she has the feeding tube in place she will still be able to eat normal, but we will be able to get her extra calories and nutrition throughout the night that she desperately needs. We will also be able to directly give her medications and supplements through the tube which will be a great blessing to her.