Thursday, August 1, 2013

Life Update

Haven't posted in a while because for the most part everything is okay. Here's a quick update and some photos for fun.

Will: we have seen a significant increase in his ataxia and walking ability. It's been happening the past two weeks and it's like his legs almost just come out from under him and he falls or he runs into the door jams or walls more frequently. Poor guy got a little bruise under his eye and then on his cheek - same side of the face - within a few hours of each other. However, he's been doing good in physical therapy, which I find odd.

We think we might have figured out what's going on - he has been hiccupping in his sleep. Usually between 1 and 3 a.m. Sometimes it wakes him up and other nights he is just very restless. Lots of moving. You can see a noticeable decrease in energy the following day after the hiccups. When he doesn't hiccup during the night he seems better the next day.

So, we're going to do another sleep study, scheduled for next Wednesday. I don't anticipate any poor results, but this will give us some reassurances and data on his sleep which is a big contributor for his energy levels the following day.

Research has shown that putting a mito patient on oxygen while they sleep actually helps them get better, more restful sleep and helps to conserve and secure more energy for the following day. I'm really hoping we don't have to add that to the list, but if we do, it would be an easy fix if it helps his stamina.

At the Circus

Hard to believe Will has been doing speech therapy for 6 months now! I am still amazed at his progress. We did a three day test during speech to assess his abilities.
  • Fluency, which tests stuttering, is not going to be good. He still is stuttering quite a bit and thankfully, Dr. Koenig doesn't attribute it to disease progress, but rather "normal" four year old stuff. We're continuing to work on this through therapy and we've seen a change for the better. Just a work in progress.
  • Language, this tests his critical thinking or what I call, cognitive ability. This little four year old scored on a 6 year old level for his language skills. Oftentimes I have heard many parents say they think their mito child is "trapped in their body" - I am so very thankful that Will is able to express himself.
  • Articulation, this tests how well he pronounces his words. So for example kids by age two should have conquered the "f" sound. Now, he has and uses it in spontaneous talk. We're continuing to work on quite a few letters and slowly but surely he is mastering them.
So overall, speech therapy is working. Ms. Cassie (who we all love) has done an amazing job working with Will and is so patient. There are some sessions that I have to zone out for a minute because it's so frustrating. I can only imagine how Will must feel.

His therapy and school schedule is demanding and he handles it like a champ.

Riding the bronco in full cowboy gear. At our apt with Dr. Koenig one of the other patients parents was wearing "cowboy gear" and one of the nurses talked him into visiting Will. Will was in absolute awe. Come to find out this family had just been diagnosed with Leigh's as well. Then I was in awe - that this dad was able to do that for another child on such a hard day was amazing.

We had a mito/neurologist apt a few weeks ago and Dr. Koenig thought he was looking really good and to keep doing what we're doing. He is 48 pounds and 44 inches. He's now wearing size 6/7 shorts and 5/6/7 shirts (depending on the store). He keeps trying to wear some of his favorite cowboy shirts that simply do not fit anymore.

He's been growing so much we're in the process of finding a new pediatric rehab doctor for his AFO / leg braces. His old doctor retired and this "new boot" process can take well up to 6 weeks. I don't want his toes sticking out over the edge and making him uncomfortable. And so begins the next round of boots. I'll be curious to see if he picks a new design instead of the usual sports theme.

How I found Will asleep one night - note the pillows are in the top right corner.

Baby Martin #2: Everything is still looking and going well. 17 weeks and counting. I am out of the tired phase and am happy to have some energy and "zest" back. So far the biggest problem has been headaches. I'm not a fan and just try to power through them. We'll be finding out the gender in late August so looking forward to that day.

Life in general... is good. It's so much easier to take these little hiccups in the road - speech, a sleep study and new boots - when you know who to call and what to do.

Being silly before bedtime.


  1. So glad everything is going well for Will and for Baby #2!! XOXO

  2. Think of you all often and pray for you every day. Will is such a cutie!! I look forward to your updates and pictures of Will. Love you.

  3. I am so glad Will is kicking butt! Being able to express himself verbally has got to be huge for you guys. Glad baby#2 is going smoothly...can't wait to find out the gender ( I hope you're planning to share!) :). Sending love and positive vibes from San Antonio!

  4. Congratulations on the news of this newest addition to your family! It is such a blessing on it's own, but the amazing things it will do for Will's life are beyond measurement. We have four and our last was our only "unexpected" little one. The pregnancy came in the midst of some very stressful periods of Sam's fight with Mito and I wasn't sure what life would look like with 4 including one with such serious medical needs. But now, the smiles and joy of Sam being a big brother have made even the hectic moments a blessing. We send our prayers for Will. Sam just had another sleep study too and awaiting results. He is already on oxygen at night and intermittantly throughout the day and it has been life changing. Sam is shifting his mito care to Dr. Koenig with our first appt next month and I feel further reassured about this decision in reading all the praise I hear from other parents like you. Maybe one day our boys will meet in the waiting room and compare cowboy stories. :)

  5. "Research has shown that putting a mito patient on oxygen while they sleep actually helps them get better"
    Any research pointer for this ? I am really interested in trying this for myself.