Bullet Points & Random Pictures

Buc-ee's

There is so very much going on over here, which calls for a bullet point post.

And random pictures.

Of course.

Love this girl

*A week in Houston in May to see the kid’s medical team there (some of whom we had not seen in person in more than a year because of our “excitement” here last year) = long appointments, too much information shared, more changes to care than one can imagine (we are STILL working on making some of the changes happen), and precious time with friends.

With our special friend, Cayde (new lungs!!)

*My trip to the Mito Symposium went really well. I have a partially written post I hope to get posted soon. Lots of information, awesome people, and a few days in California is note worthy.

Pool time

Pretty girl

My birthday with the Fam

*We have now tried to remove the MicKey peg tube (feeding tube the surgeon put in after Madison’s surgery) TWICE and cannot get the stupid thing out. This last attempt resulted in…..wait for it……another stinking abscess. Another stinking abscess = Madi will be going under anesthesia next week for an endoscopy so they can remove the tube and explore her g-tube tract looking for another fistula…..on Wednesday….four days before we leave for Seattle/Camp Korey. Nah….I am not stressed about that AT ALL!!

Father Day

Good2Go Tacos...mmmm

*We had some precious friends come up from Houston and stay with us for the 4^th of July weekend…..and had an amazing, awesome, wonderful time.

Fireworks at Fair Park

*My precious grandmother developed some issues and ended up inpatient on the 1^st of July. Two hospitals & a skilled nursing facility later, she is settling in not far from my home, and is recovering like a CHAMP!! It was a stressful, busy couple of weeks while we got her back to better health, but she is improving daily and we are looking forward to having her closer by.

What a black labrador amuses himself with, apparently

*I apologized to Abby for being gone so much lately (time at the hospital with Memaw) and she responded with, “It’s okay mom, the hospital is just what we do in the summer.” Ugh. It was a gut check for me, but she truly meant it as reassuring.

My son was called for Jury Duty today!!!

*Prep for Seattle has been slowly, but surely, happening. The McNair Kid’s Camp Fund post will go up sometime later today!!!

Look at that…..back to busy and “normal”.

Did last summer really happen????????

Off to Learn....& Worry

Just a little.

Year before last, a friend asked me to co-lead a new support group here in Dallas for those with Mitochondrial Disease. I was hesitant, only because my life is so unpredictable and I didn't want to commit to something I could not follow through on. She talked me into it....and if I am honest, I am glad she did.

She has the youth and hope to make this happen.....I have the age and experience to know how tough it is to make one work here.

I have been down this road, a couple of times now.

I have theories why it's a difficult endeavor for this location, but there is no question it's needed. We just need to be clever enough to make it happen and be successful, in whatever form it might take.

Each year, the United Mitochondrial Disease Foundation holds a symposium in different parts of the country. Some of the top doctors and researchers in the field of Mitochondrial medicine convene in one location to share information with the scientific community for 3 days, and then the families for two.

It has only once been in this part of the country, in 2002, and I was there for that one. It's the only one I have attended, but can say, it's a pretty remarkable experience, and an awesome way to learn more about this disease we are living with.

With a new group here, the UMDF offered us a scholarship to be able to attend this year, to have the chance to learn more, to network, and hopefully find some ideas on getting this group going. I could not have done it without them covering my travel costs, and I am incredibly grateful!!

In all honesty, I don't love leaving town without my crew. I worry a little that someone will get sick and I won't be here to manage it. I worry a little that I will miss some moment, or that we could have created some together had they been able to come with me. Needless to say, I worry a little. And I miss them....a lot.

I have two of my three "acting up" some medically right now, and this makes me, well..... apprehensive. However, I am leaving them in awesome hands (thanks Mom, Michael & Stephanie!!), and I just have to have some faith that this is meant to be.

I am slowly warming up to the idea of three days on my own ;-) (but seriously, way more slowly than I think I should be....LOL)

Please say an extra prayer that my family behaves while I am away.....that my brain can stay engaged enough to learn as much as possible....and that I can get there and get back with no complications!! I fly out tomorrow, and get back at noon on Sunday, just in time to celebrate the man I love.

I am officially declaring that I take NO responsibility for what my crazy family may do while I am away!! You have been warned!!!