Good News and Bad News...

Good news...Kendall has definitely warmed up to the idea of Hippotherapy. She didn't cry once tonight at the barn. She pet the horses and even allowed us to put her on Batman the pony.

Bad news....we have to go in the hospital on Thursday for a 24-48 hour EEG to see what the heck Kendall's brain is doing these days! Her last EEG didn't capture sleep, and I haven't been able to sleep because of it. If she's having seizures in her sleep, we need to know. And I guess I'll have to miss my monthly Bunco group to find out :(

We should get the Enzyme testing results while we're there too. We'll keep ya posted. Keep us in your prayers too please...

Getting Stronger

Kendall's balance is improving by the minute. If she would just stop throwing herself back into an arching position all the time, she would definitely be able to sit independently....And if she would just open up her hands and allow weight to be put on them, she'd be even better.

For the longest time, Kendall never had an interest in looking at anything or playing or touching toys. It was impossible to find motivation for her to do any type of therapy other than us moving her on our own to bear weight and have stretches.

I'm not sure if it's the improvement in her vision, her sudden interest in looking at herself in the mirror, or her new found love for playing the piano...but all of a sudden she's interested in the world! She loves movement and now is starting to initiate it on her own!

The latest Kendall development....when the song "If You're Happy and You Know It" comes on, she will clap her leg with her right hand, stomp her feet (you have to watch carefully) and nod her head every time! I even peeked around the corner at her in the room by herself to see if she would do it without being prompted...and she did! With a gigantic smile on her face!

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!

Um, on second thought...

We visited the barn last night just so I could start talking to Kendall about where she was going and what she would see.

As soon as we walked in the arena, she tightened up. I guess it was because it was hot, and there were all sorts of smells, and a different environment than she's used to. And being held up by her tall 6'5 daddy didn't help much. We walked over to the horse to give her a peak, and she freaked out!

Like, freaked out like I've never seen her do before. Granted, it was a big horse, and it shook which scared her, but she FREAKED out.

Then I took her and Daddy came up behind her to give her her pacifier, and she freaked again. Jerking forward and screaming in fear. I think she though he was a horse.

It didn't stop. We walked around and looked at the goats and ponies, and she continued. Then I had the dreaded thought that maybe it was a seizure. The screaming, the hunching, looking terrified, are all familiar sights for us.

When we got in the car she was fine. She was a little on edge, but once we had the car moving she was fine the rest of the night. So, I don't know.

It definitely did not go like I thought it would. My initial reaction was to wait a few more months. We haven't even tried to put the helmet on her yet...which will surely be another freak out. I'm sure they've seen it all before, but I hate to spend all this money just to have her scream crazily each time.

Justin says I can't keep her in a bubble. He says we need to get her involved in the world, and since she's never seen a horse up close before, of course she'd be scared.

Personally, I like her bubble. It means she's safe and happy. Maybe I need some therapeutic riding....

So, those of you who've done this before, did your child freak out the first time they saw one up close? Do I continue to push her if she's terrified? I'm so disappointed!!!

Therapeutic Riding...

We are super excited to announce Kendall will begin Therapeutic Riding at All Star Equestrian on Wednesday!

I have been looking into this for some time now. Hippotherapy was recommended to us very early on, but the only facility that offers Hippotherapy is pretty far from our home. While billing insurance would be a nice benefit, we would have to quit one of our therapies, and I'm so not willing to do that right now! We have THE BEST team of people working with Kendall. Each of them feel like family to us!

We are visiting the barn tonight as a family to scope it out! Kamden is just as excited about this as I am. And Justin (though he doesn't show excitement quite as often I do) seems pretty excited too. He loves horses, grew up around them, and played Polo in college! So, I think this will be a very nice activity for him to participate in with Kendall.

I hope to see tremendous improvements in Kendall's trunk control. I have read and heard lots of success stories, and from what I hear, the younger you start, the better. So yay!

Kendall's IFSP was yesterday. The DAY C shows her adaptive and cognitive developmental areas at 10 months. Her Fine Motor and Gross Motor at a whopping 3 months, and the most impressive gain in the past year....Expressive and Receptive Language at 19 months. What a difference a year can make.

The latest milestone...when asked where her toes are while lying on her back, she will pull her knees in, crunch her head up, and almost (like really really close) touch her little toes. Have I mentioned how proud I am of her lately!?!?!

Living.

"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." ~Albert Einstein

College Football...

Kendall and Daddy enjoyed the night watching the OU game. Justin taught her lots of cheers, and they shared a lot of belly laughs.

Around halftime, Kendall went to bed with me to get caught up on trashy reality tv. It was there that I noticed her new love of "scootching." She will start out in bed with her head by the headboard, and end up doing a complete 180. When she gets to that point, she's very proud.

She's started to make a "kiss" sound back to you when you do it to her first. She's also started saying "oh no!" when her pacifier falls out of her mouth.

Her personality is showing more and more everyday!

Slacking

I guess it comes with the territory of being a mom. I constantly feel like I'm not doing enough. My house isn't ever clean enough. The dogs aren't taken care of as good as they should be. I'm not as patient as I should be when doing 4th grade homework with Kamden. I can't volunteer as much as I would like at the school. Kendall gets loads of therapies, but I feel like I'm not trying enough new stuff. I don't return e-mails like I should. I don't return calls like I should. I feel like I start a lot of things, but don't finish anything...not to metion my tivo'd shows are at an all time max!

And I actually really do feel on most days that I have pretty good balance of things in my life... I just need more hours in the day!

So, the past week got away from me. Justin traveled quite a bit last week, so I was on my own....(probably why I'm so behind on everything!) We had a wonderful weekend with friends, and Kam had a great first week of school.

Kendall had and eye appointment Monday. We are going to possibly start her in contacts. Her glasses are just too huge. She'll still have to wear lenses, but they could potentially be much smaller. Everything looks great with her eyes. We're still watching her right eye for higher than average pressures.

We dropped the ratio yesterday. So far so good. She's been pretty cranky and not sleeping very well. I feel like she may be coming down with something, or its just allergies because my house is so dusty!

We are going to be starting Kendall on the insulin pump soon. Due to the fact that she is such a "complicated" type 1 diabetic...she will have to be hospitalized for 5 days to figure it out. I REALLY was trying to avoid going right in the middle of flu season.

We dont have a whole lot going on right now, and it's pretty nice! Hopefully things can continue just like they are :)