Sunday, March 28, 2010

Half Marathon

Saturday I completed the Zooma Austin half marathon!!! It was the most challenging course I have ever run, the longest distance I have ever run and the fastest time I have ever completed at that distance.

I was honored to train along the way with "real" runners who encouraged me and fellowshiped me into their inner circle. Here is a terrible picture of the gang (I'm #257) who supported Hayden and Spina Bifida awareness by wearing the shirts that I had made.

Here is the history of why I set out on this journey. I decided to set this goal for myself to loose the rest of the baby weight and to just get in shape. Since I had never been a runner beyond 2-3 miles, I thought this might not be attainable. So I started training for 11 weeks and I did it!! Every time I wanted to quit and not push myself to run anymore and all my excuses like asthma, waking up to nurse a baby, how tired I was, etc, etc, I drew on the strength of Hayden. I thought about how he works so incredibly hard to do the littlest of things. I thought about how he just has to push to hold a pose in PT. I thought about those people with Spina Bifida who may not be able to run. Then it hit me...this was going to be FTWC (for those who can't). Since I could, I had no more excuses.

It was amazing. I don't know if I will do it again, but I know I can as long as I continue to have the love and support of such a wonderful husband like Scott.

Friday, March 19, 2010

Half Marathon for Hayden

In one week I will be running my first half marathon, Zooma. I have never done anything like this. All the times I wanted to quit, I just think of the strength of my little guy, Hayden.

I am having tank tops printed on Monday and if you want one, lemme know ~$20.
The reason behind the design; somewhere I read that the daisy is the symbol and the light color of yellow is the ribbon for Spina Bifida.

Sunday, March 14, 2010

The Tender Mercies of the Lord

Saturday was a big day for us. Scott and the kiddos were hit by a red light runner going 55+mph. Amazingly all are OK except for the vehicles. The man that ran the light by our community flipped several times and walked out uninjured. It was a great blessing that everyone was OK.

I also got a note from a new friend, Nicole, that just found our blog as she learned that her unborn child has Spina Bifida. Here is what she had on her blog. It is a good video.

Wednesday, March 10, 2010

1 Year Spina Bifida Clinic at Dell Children's Hospital

Hayden might kill me for this picture when his is older, but isn't it cute!
Thank you for all of the prayers for Hayden. They are working. Hayden had a hip x-ray and an ultrasound of his bladder and kidneys. Everything came back perfect! And after a year of 7 surgeries, his bladder is emptying nicely (no cathing!), his shunt in his brain is working beautifully, his spinal scar has healed handsomely and we leaned from his MRI that his syrinx in his spine has completely gone away! These are enormously positive reports for Hayden and our gratitude to God and the medical staff that works with him is never ceasing.
However, our happy champ, Hayden's biggest battle is with low muscle tone called Hypotonia. It is caused by neurological injury from his Arnold Chairi II malformation. Hayden's sweet neuro surgeon was very sensitive in telling us that Hayden's cerebellum is very small and has not grown. This is the reason why he is delayed in his gross motor and fine motor skills. There is no known treatment or cure, but his doctor was optimistic in that Hayden's smart parts of his brain are making up for his lack of cerebellum. Muscle strength and tone are very different things and I would strongly recommend that you read this link:
Another great link is:
check out Chloe

Sunday, March 7, 2010

SB Clinic & 1 year well check

BTW... In addition to our earlier post....Hayden did great at his 1 year well check. He weighed in at 20 slim lbs and is in the 50% for height. This week his in now enough in weight and height to change his car seat around to better watch his sister's mischievous advances.

Spina Bifida clinic is also on Tuesday. Prayers and good thoughts are always appreciated. He will have a bladder and kidney ultrasound to make sure everything continues to look OK. This is always a little bit frightening. We have been able to stop catheterizing him because he seems to be voiding his urine well enough on his own. All in all...we have no reason to expect anything but good news at this all day clinic.

His clinic visits will be less frequent from every three months to now every six months. Since he has had a good pattern of his shunt working properly and not being symptomatic of his Chairi brain condition, we fully anticipate continued further positive development and health. Currently Hayden is "emerging" in several of the 6-9 month developmental checklist. I have attached a link to see what this entails.

Austin Ronald McDonald House

This Saturday our church women's group, Relief Society, volunteered to cook breakfast at the Ronald McDonald House (RMDH). It was such a joyful experience for me to have other women who volunteered their time to serve. I think they all benefited from the experience but none as much as I did. It was exactly one year ago that we were there. It brought back a lot of emotions mostly happy.
I have such great love for this organization. Most all the meals provided at the RMDH are done through volunteers. The love provided via meals is such a welcome support and relief for those staying at the house. Now, being on the service end, it was even more enjoyable.

This weekend was a great one. We also got to sneak in a great photo session with a wonderfully skilled photographer, Sara Boulter. Remarkably she kept Hanna occupied and happy. This is a real talent. Be sure to check out her web site: Here is a peak (home photos) at how we dressed the kiddos for the pictures..