Slow and Steady...... the turtle will win the race!

Hey Everyone,

I've decided to start a blog. I think it's going to be a better medium for sharing our families news -at least a better medium than my facebook notes page :-)  I also understand if you don't want to read it all and just skim it for the highlights... it's just as much for me as it is for you. I think purging our life on paper has become a therapeutic way for me to process everything that goes on in our lives. Things have been pretty busy here -not that they are every really slow!! We have been enjoying the Summer weather and getting time to have fun out and about and at the lake. It's been a great Summer so far.

Ashton is continuing to make great progress in physical therapy. He has been fitted for orthopedic supports that help keep his ankles better in line with his legs and will help to prevent 'flat feet'. His low muscle tone have allowed him to turn in his ankles and it makes him wobbly when he walks... the supports really seem to be helping so far! He is responding well to his growth hormone shots. He's grown just over one inch in the last three months! This is a pretty big deal, since he has not grown at all in the last year prior to starting growth hormone. He is still shorter than his peers and his muscle tone is low, but we are seeing improvement in both of these areas! He is doing very well in physical therapy and has a great relationship with his physical therapists. They are wonderful blessings and are so patient with him. He is now walking with very little assistance. He walks well just holding on with one hand.... slow and steady. We are continuing to work on his confidence issue, as we believe that he 'knows better' when trying to walk that if he falls it will hurt. He is so careful... He's too darn smart! We are working on potty training, however with his limited mobility skills it has proven to be a big challenge. We are now working on potty training both him and Kiera together- teamwork! ...and we're still working on it!

We recently visited the Mayo Clinic in Rochester for his 3 month follow-up since beginning growth hormone. His levels are still low, but steadily increasing as we adjust his daily injections to his bodies tolerance. His blood work also showed that his thyroid releasing hormones are steady, but his cortisol (the bodies stress response) levels are on the decline. We know it is likely that Ashton's pituitary will eventually become non-functioning like Owen's... we just pray it won't be so soon. We have opted to have a 're-draw' at our local clinic where they will send out Ashton's blood work to see if the numbers would improve before we choose to begin a lifetime of medication for him. Keep on praying! But like Owen, if his levels are consistently low we are blessed to have the availability of medication to 'cure' him of his deficiencies.

At Mayo we also had the pleasure of visiting with our Geneticist. We haven't learned anything from the many genetic tests we have sent out ... I take it back -we've been told Ashton is 'normal' a few times! That's pretty encouraging! :) We are still exploring the realm of astronomically rare genetic conditions and we are fortunate to have a geneticist that is unhappy with the unknown. We have ruled out nearly all of the Recessive X disorders/gene quirks available. (meaning that we have ruled out almost all the gene disorders that only effect boys in a family) It now seems possible that we are just lucky that Kiera was born unaffected by the problems that Owen and Ashton share. We are now looking into some Autosomal Recessive gene quirks that may point us toward a diagnosis. (Autosomal Recessive: both Shelby and I would have to be carriers of some quirky gene that makes quirky kids) All possibilities seem to be pointing toward the transcription factors of the genetic code (pieces of the DNA that turn on/off other genes) We will be sending out blood work this week, but don't expect results for a couple of months. It's alot to take in... trust me, I know! We are hoping that at some point we can ultimately pinpoint the specific genetic quirk that caused Owen and Ashton's shared symptoms. We also know that we might never find it, but we pray that science will reveal the truth to us. It may not change the here and now of our situation, but it could open up possibilities for future therapies and also provide information on whether our kiddos (Kiera in particular) could pass this genetic quirk on. There's a lot of benefit to knowing, but what we know now is enough too.

Owen is doing pretty darn good! We have worked VERY hard and are happy to share with you that he is no longer using his g-tube! He gets all of his medicines and formula orally! WOOO HOOOO!! This is such a huge deal! We have not used his tube site for nearly 3 weeks! We got a great tip on some 'squeezable' bottles and we've been in business ever since.  Our doctors would like us to leave his button in for an additional 3-5 months to ensure we do not have to put it back in for some reason, but we are on the right track to being a tube-free kiddo! He has really made the transition well! He's really a go-getter. He's been handed so many lemons, I think he's become a real lemonade expert!  He's eating pureed foods once and sometimes twice a day and really enjoying the new flavors and textures. We sometimes find that the more acidic fruits/veggies irritate his nose lining and so we stick to the more bland purees too keep the experience positive until his palate closure. We expect his palate closure surgery to be in late September or early October.

Next Thursday we are scheduled for surgery on his eyes. He has 'congenital estropia' -he's unable to uncross his eyes. It's making seeing and tracking objects very difficult for him (imagine looking at things with your eyes crossed all the time!!). The great news is: we know he has perfect vision/eye health! The bad news is: with his eye muscles holding his eyes crossed, his perfect vision isn't doing him a whole lot of good right now. We suspect he sees a lot of  double images and that's having some affect on his gross and fine motor development. On the 26th we will go to St. Paul Children's and have an outpatient surgery to correct and straighten his eyes. We will probably have to do some eye patching following the surgery to retrain his eyes, but we are hopeful that this surgery will let him see the world like the rest of us do. We also know that the surgery is not without risk. It's possible that his eye problem stems from within his brain and his brain is not interpreting the images properly, but we won't know if we can change the situation until we try. More prayers needed!

Owen is otherwise growing and thriving. He has a very magnetic type personality. He smiles, squeals and his whole body gets happy when you talk to him. He's so social and loves to smile and laugh. He's rolling over and doing well holding his head. He has an Occupation Therapist that sees him on a bi-weekly basis... she's really great! It's nice to have an extra set of eyes following his development.

And then there is Kiera- my little miss sunshine! I could write all day about her. She's so sweet, giving, she's got a heart of gold, she's a daredevil, she's as clumsy as me and has a really sweet personality. She's beautiful inside and out! She's growing so fast right in front of my eyes- I can hardly believe she will be two in a few weeks! She is into everything, on top of everything and learning new things every day. We are working very hard on potty training with her, she gets it... she's just very independent (like with everything else) and is on her own time schedule. We'll get there. It's great to see the relationship between Kiera and Ashton grow, they are best buddies. But, like all good friends- they fight sometimes! :)

Shelby and I are both doing pretty good. It's a constant struggle to find the 'us' time, not just the 'mom & dad' time. We are both aware and consciously work on it. We're stressed a lot but are each other's support and best friends. Thank God we've got each other! We are still working on projects around the house, finding the time to get them done is a huge hurdle. I'm hoping we can get Owen's room done and our entry way floor and trim re-installed soon. those are on my wish list. :) Then on to the downstairs and our master bathroom. Ahhhh...... the plight of the do-it-yourselfer. We once claimed we had more time than money. ha ha ha... and now by the looks of our undone projects- both are in short supply! LOL!!

I guess that's our new news. Like I said before, I now it's A LOT of information and stuff... we are so proud and blessed with our kiddos and we are really blessed to have you all in our lives to help us through the bumps. We can't do it alone! Lots of Hugs & Love to you all!

Sarah & Shelby Fox