Hope for Max and Alex: April 2013

All we can say is WOW! I think we made an all-time record for our team this year with almost $4,000 in donations. Aaron and I cannot thank you all enough for your continued support! This year’s MDA Muscle Walk was a huge success. A grand total of over $21,000 was raised, more than double last year.

We really have some of the most generous family and friends around, whether it is through financial support, moral support, and/or prayers we are always so humbled that you all take time for our family. We know there are lots of worthwhile organizations and causes to support, so we thank you for taking the time to support ours.

As I said in my last post, it is new equipment spring in the High household. We received word this week that both Max’s new bath system and WREX robotic arms were approved! We are hoping to have both in the house prior to summer. Speaking of summer, I can’t believe that there is only four weeks of kindergarten left this year! The time has flown by and we are so pleased at how well Max has done, both in the classroom and with his immune system. I was super excited to sign him up for a week long summer camp with his gifted teacher…although I’m not sure who will enjoy it more, him or Ms. Robin.

Right now we are very excited about “condo week” on Perdido Key. My parents stayed in one last year and every time we go over the bridge Max asks when we can go back to the condo. I am praying the weather cooperates for at least some of the week, so we can all enjoy some much needed beach time.

MDA MUSCLE WALK SATURDAY, APRIL 20TH, PANAMA CITY MALL

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...and let's face it, in Florida it is almost over. The weather has been beautiful for the past few weeks and we have been busy. Max was on spring break and I think we all enjoyed the much needed break from his school schedule. That week was also pulmonary and orthopaedic surgeon week, ya know 'cause we really know how to live it up. We met another new pulmonary doc (our 4th since moving to this area, the 3rd one is still here just wanted to meet both of them) and got Max's scoliosis checked at the ortho clinic. I think we were all relatively pleased that Max's curve only increased 4 degrees (29-33) in the past year, especially given the amount of growing he did.

Then came Easter and my BFF/the boys' Godmother, Kristen came to visit. It was such a great time, although I wish the weather would have cooperated for some more beach time while she was here.

Oh my goodness, Alex is really funny at the beach. Proof that he doesn't have texture issues, he loved playing in wet sand and proceeded to eat a couple of handfuls.

Pretty sure we should dub this "new equipment spring." We have been super excited to get our NEW COUGH ASSIST MACHINE! We are working on a new suction machine (that is supposed to be just as powerful, but 50% quieter and comes in blue and white versus that hideous clinical gray). We trialed the WREX robotic arm last week and are working on a major power chair revamp, replacing lots of worn out pieces and attempting a joystick driving capability. We are also working on a bath transfer system, as Max continues to grow and this will make it much easier to give him a shower - no lifting required.

Alex continues to amaze us with his progress. He is actively "army crawling" around the house, gasp, we may have to invest in a baby gate! He is able to bring himself up from laying down to the sitting position. He is able to push through his legs and even get up to sitting on his legs, but is not pushing up to attempt to stand. It's funny though, because when you try to stand him up he will draw his legs up to avoid it, so there is some muscle function there. We are so pleased with his abililties and are very excited for trialing power chairs for him this summer. Of course, Aaron and I are having to get use to some more "normal" things like feeding a kiddo by mouth, which when your previous baby was at constant risk of aspiration, can be a little intimidating.

I think that is about it for now. We are in full swing for the MDA Muscle Walk, so if you are joining us on the team we will see you there!