Simplify..

I finally did it. I cleaned out my e-mail on my phone (I had 6,798 e-mails) and my yahoo account (9,213.) It was a great feeling. Of course I didn't read all of them, but now they are gone for good!

I liked the feeling of having a fresh start so much that I took it a step further. I went into my Yahoo list serves (I had 10 of them) and support groups who have been so insightful these past 2 and a half years and changed all of my lists to "no e-mails" status. So, yesterday and today I only received a few e-mails, and was able to see the ones that I really needed to see! It was wonderful.

Don't get me wrong, the support system is great, but it was beginning to stress me out. Too many e-mails on too many topics, makes me worry about things I don't need to worry about. It was starting to make me feel like I wasn't doing enough...when I know in my heart, we are.

I often think that my obsession with knowing everything about Kendall's health, therapies, etc...takes over in an unhealthy way. If I could refocus my energy on doing things with Kendall instead of reading about them it would be so much better!

I've also been running a lot lately. It's my therapy. I love it. I have a half marathon this Sunday, and I have never felt so strong going into one before! I know this will be a personal record for me! Barring any unforeseen injuries, I plan to do the White Rock Marathon the first week in December. We'll see how that goes....

Anyway, I have issues cleaning out my running shoes. (obviously) There are a lot of miles and memories on each pair of running shoes I own. It's kinda ridiculous. But I can actually remember each race with each pair of shoes, and every situation in my life I worked through my head while running. But I did it. I narrowed it down to 4 pairs... and am putting these in the attic!

Next, I plan to tackle the black hole....closet....in my office. Wish me luck!

A Waiting Game...Again...

Well, it seems we are apparently not in the "clear" with the muscle biopsy...yet.

After multiple phone calls with both our Neurologist and his nurse last week, we are in a holding pattern again. Kendall's muscle biopsy pathology report came back normal (with the exception of the Type 1 Muscle Fiber Atrophy.) Apparently the enzyme testings were not sent where they were supposed to be right away. So, yesterday they were sent out again. And we will have more specific results based on those results in around two weeks.

Kendall and I spent Friday morning at the zoo with our friends Aileen and her son Reece, and Holly and Caleigh. We bought zoo passes so we can return again this fall whenever we want. Kendall is pretty opinionated on the animals she likes. Fish and birds are in the lead, while anything that has fur and is bigger than her she turns her nose up at. For obvious reasons, we didn't even attempt to visit the horses at the zoo!

Friday afternoon she was pretty fussy. But she and I had a big break through. Her communication with the iPad is going well, but she definitely prefers the guessing game instead. (That is where I guess what's wrong and she answers me with a smile, a nod yes, or a firm "uh uh" for no.) I put her in her swing because she told me on the iPad that's what she wanted to do. After about 2 minutes, she was saying no, so I took her out. Then she pointed (with her pointer finger) at the stuffed animal. She wanted to push Tigger in the swing. So we did. She laughed, until it was boring...then I suggested we take him out and put her baby in the swing. She enthusiastically nodded yes...so we looked for baby. She was on the supply shelf in the corner of the room. I knew that, but we walked around the room looking for her. Under the bed, under the covers, in the closet. Then, I walked by the shelf and Kendall started squealing, and reached out to grab the baby. My heart sang!

So, no matter what those results say about her having Mito, I have to keep myself in the mindset I had on Friday before the call from the Dr. Kendall's health hasn't been declining, and her development has been soaring! I need to live in the now. (for Kendall's benefit and mine!)

Well, Crap.

I really didn't want to have to write this post...but figured I better since we have so many people who keep Kendall in their prayers and ask about her daily.

Yesterday when she woke up from her nap she had a 20 minute seizure.

It stopped after I gave her Klonnopin.

She's been drooly and lethargic ever since.

I'm very disappointed, but have licked my wounds and picked myself back up. Of course I know one seizure over a period of 7 months isn't bad. It is still so much better than we had before, but it broke my heart.

I've been watching her like a hawk, and treating her like she's made of glass.

I should hear back from the Neuro team to see what we need to do next. I'd take the diet over lots of medications any day...so if we need to continue on a higher ration, I'm good with that.

Her ketones have been fine still. Running blood ketones between 5-8 has been her norm on the 4:1 ratio, the 3.5:1 ratio, and the 3:1 ratio. So, I don't really know what to make of it.

She did have a flu shot last week.

So today the count starts over. Boo.

My Late Weekend Recap...

This past weekend was a whirlwind! We had something going on pretty much all day each day!

We started out Friday at the Cowboys Stadium with my sister and brother-in-law...in a suite for the Tim McGraw concert, and some sort of Cowboys Hall of Fame thingy for Emmit Smith. (I'm not a huge football fan, so that part was boring) But the concert was awesome, that stadium is unreal, and being on a ground level suite on the 50 yd line is unbelievable! Hopefully we behaved ourselves well enough to be invited back (but that's questionable with my sister and I together!)

Saturday we had a celebration at my sister's for my mom's 70th birthday! This has been a very, very, very long year for her, so it was indeed a birthday celebration!

Sunday morning, we attended a special needs play date at Holly's. I forgot my camera, but I'm sure there are pictures floating around the blogosphere somewhere! We had a very nice time meeting friends we've talked with over blogs or Facebook. It's hard to explain to others the family we have found among other families who are in the same boat one way or another! I think we all share the same sense of humor about things. And as Catherine said...it was a nice break from "normal!" There were lots of laughs, and talk of Dr.'s and therapies, we did a book/toy swap, and discussed lots. It was a good time! We hope to make this a monthly thing... and Kendall needs to redeem herself...since she hadn't had a nap and was really fussy the whole time.

We booked out a little early because Kam and I had to get home so we could make it to the Jonas Brothers Concert! This was Kam's first "real" concert. He had a blast with his friend Brayden, his little sister and her friend. They lasted a lot longer than I thought they would. It was hot, but that didn't stop them from dancing and playing air guitar while looking at the screen. Kamden's throat hurt from singing so loudly! Everyone was pooped and fell asleep on the drive home! I think Kristin, Brayden's mom, and I were more exhausted than the kids after our hour and a half in traffic. We also definitely earned mothers of the year awards when we led 4 kids jay walking across a busy street to the car where we parked to avoid traffic! On the driveway out of the lot, we saw 2 pit bulls eating out of a garbage can right where we had just been! Thank goodness they were too busy scrounging to come after the 6 of us! I don't know what I would have done!

It was a busy weekend, but a really good time! Next weekend I fully intend to stay home, watch movies, and be still!

Hippotherapy...

So, here's the plan.

Kendall's SLP is opening 2 hippotherapy and therapeutic riding facilities in the near future. She asked Justin a few weeks ago if he would like to help her with the horses. He happily agreed to ride for her and help take care of the horses in the barn by our house when she's in a pinch.

Last Friday we discussed the pros and cons of hippotherapy vs. therapeutic riding for Kendall. And have decided hippotherapy is the best fit for her and her needs right now.

But since its not open just yet, we are going to spend the next few months getting Kendall acclimated to the horses. On our own time (as in no official therapy sessions) just letting Kendall get used to the surroundings and the whole idea. When daddy heads up there to ride, we may tag along and watch. On Monday evenings, we will take Kendall to visit the beautiful horses and get used to the sights.

Tonight Kendall met Batman. Batman is a rescue pony that was donated because the horses at his old barn picked on him. He's small and thin, and Kendall found him a lot less intimidating. After only 2 or 3 freak outs (exactly like the ones last week) she actually pat the pony on the back. She's not fond of his tail at all though! And does not like when he sneezes.

She did so much better on her second try. And now, I also totally get it! She was definitely afraid of the big horses. She's not OK with us just forcing her to do something (what 2 and a half year old is!?) This is going to take some work. We left with a bucket, a brush, a sponge, and a chunk of hair from Batman! We also added hay because that is something we found that completely terrified her. We are talking about the horses and these items this week, and will head back again next Monday.

I'm at peace with this decision, and have relaxed a bit. There is no need to rush anything. The opportunity for her to be on a horse at some point is definitely in her future...we're just going to slow our roll a little!



As always, thanks for your suggestions and input!