Tag Archives: mitochondrial disorder

Skylar’s 1st Swim Meet

Posted on by under Everyday

Skylar swam in her 1st swim meet with her Special Olympics team this past Saturday.  I was so nervous as I had no idea what to expect.  Even though she practices each week with her team, I wasn’t sure how she would do when we were at the actual meet. I prayed fervently for her to just enjoy herself!  

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Shortly after we arrived, I snapped this picture of her next to the pool.  I could hear her talking to herself realized she was repeating the things that her coaches and I have been telling her the past few months:

“Don’t come off your back until you’ve touched the wall!”

“Make sure you don’t push off the lane line!”

At this moment, more than anything, I wished that “Have fun! I’m proud of you, no matter what!” would have been one of the phrases she kept repeating.  You see, in all of my nervousness and hoping that she would have a legal stroke and finish the race strong, I forgot to impart to her the most important advice of all:  Have fun! I’m proud of you, no matter what!

As her teammates began to arrive, I could see that she was relaxing a bit more. Getting excited for the day.  She was excited when they passed out her team t-shirts.

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Shortly before the meet began, one of her coaches walked over and Skylar blurted out “I’m going to FAIL!”  I held my breath as I waited for her coach’s response.

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“You aren’t going to fail!  You are going to do great!”  (Thank you Coach Patty!)

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Skylar was so quiet while waiting for her event.  I stayed close, but tried not to hover (I’m really working on that!).  She did a great job following the instructions of the group that was helping get them all lined up.  I did manage to capture a bit of a smile right before she got into the water.  

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And then it was time!  Into the water she went.

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Her first event was the 25M Freestyle.  I can’t even begin to describe to you the improvement we have seen in this stroke the past 4 months.  

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And you better believe that we screamed like fools!  

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As she reached for the wall, I said to Chris “I can’t believe it!  She’s going to get 2nd place!  How awesome is that?”

And then, when I didn’t think I could be any more emotional, I saw Coach Patty. She was clapping, encouraging her, giving her high-fives, and congratulating her on a great swim!

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Skylar got out of the water, huge smile on her face and went right back to the staging area where she got ready for her next swim.  She only had a matter of minutes between events and I was wondering how she would do with that little rest, but she did great!  She swam the 25M Backstroke, which is actually her favorite stroke.  She struggled with the sun being in her eyes so she was all over the lane, but thankfully everyone else had the same problem.  I’m pretty sure she swam the entire race with her eyes closed! And believe it or not, she came in 2nd place again!

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She got out of the water and said “Mom, I think I’m done swimming for the day. Can we go back to the timeshare?”  I laughed and told her we had to wait for the awards ceremony.  Right about that time, one of the workers walked by and said that they were having pizza delivered for the swimmers right after the meet.  Skylar whipped her head around and said “Excuse me!  Did you just say pizza?  Mom!  We are totally staying!”

As Skylar waited for her name to be called out during the awards ceremony, she had a little smirk on her face.  She fought back a huge smile.  You could tell that she was really proud of herself!  As she should be!

So proud of our girl!

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And Skylar’s favorite part of the day?  You guessed it!

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Thanks for celebrating our girl with us!  We think she is all kinds of awesome!

Make it great!

JuJu

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A Quick Trip To Chicago and a Bit of What We Learned

Posted on by under Everyday

Skylar and I flew to Chicago on Wednesday for our annual visit to see Dr. Usman.  It was a quick trip this year.  Flew out on Wednesday and flew home on Thursday.  We will NOT be doing that again.  It was way too rushed.  We always take the early morning flight out and get to Chicago by lunch time which allows us the day to spend in the city.

Our first stop is always Bubba Gump’s for lunch.  It is Skylar’s favorite!

We then hit the swings at Navy Pier!

She loves the swings!!  I could hear her squeals as she went around and around! Skylar’s legs are the farthest on the right!

I love Navy Pier.  Yes, it is touristy, but it feels like childhood to me.  I loved going to carnivals as a kid and Navy Pier has that feel, but so much cleaner.

After Navy Pier we usually hit the Architectural Cruise, which is my favorite, but Skylar was super tired from the early flight and wanted to go back to the hotel and rest.  She ended up sleeping all the way back to the hotel.

After a quick dip in the pool and a little down time, we had dinner at Outback Steakhouse.  Skylar was so excited to go!  We usually do Outback for birthdays and special celebrations, but they do not have one in Prescott, so we haven’t been since we moved last year.

I loved our day together!  We had lots of laughs and just enjoyed being together. The following morning was our appointment with Dr. Usman.  Skylar is almost as tall as her now!

We have been seeing Dr. Usman for 8 years and this year by far was our toughest visit.  I was really discouraged about a lot of her labwork.  We discussed the likelihood that Skylar has a mitochondrial disorder.  We have had multiple doctors tell us that they believe this to be the case. We’ve had bloodwork done which have all come back inconclusive.  Unfortunately, the only way to find out for sure is a very painful muscle biopsy.  At this time we are choosing not to do that as it will only give us a definitive diagnosis, but will not change our course of treatment.  As of now, there is no cure for mitochondrial disorders.  Her treatment options include supplements, therapy, and diet changes.  She is already on a lot of the supplements that she needs, but we need to increase her doses.

Wondering what Mitochondrial Disease is?  You can read a bit about it HERE!

We are praying for complete healing!  We serve a mighty God who can do this if it is His will!  We are also praying that if it is not His will, that we will be able to handle that with dignity and grace.

I will be updating more about our course of treatment as time goes on and further decisions have been made.

Thank you for continuing to walk this road with us.  We appreciate all your prayers and messages.  I’m so thankful for each and every one of you!

JuJu