Pictures and EEG Results

First...I'd like to share the pictures Holly took of our family! We were afraid none of them would turn out...but Holly is sooo talented....and I am very excited about the shots she got! Thank you, Holly for capturing such a great shots of our family...and thanks for photo-shopping my tan lines :)

It was a rough few days... Kendall hates the hospital. As soon as someone tries to mess with her, she freaks out. She doesn't like anyone messing with her head/hair, so it was inevitable the EEG tech would have a rough time.

After the leads were placed, it took a very long time to calm her down. We read books, played with the iPad, took walks around the hall...but she was still not having any of it. She kept saying "go home" over and over again. The poor girl cried so hard and loud she made herself hoarse and croupy.

Remember the issues I had a while back with the hospital and insulins?! Well, I even received a fancy letter stating they resolved everything and each time we were admitted we would have diluted Humalog and brand name Keppra. Thankfully I planned ahead and packed everything...because they definitely didn't have either one. In the middle of holding Kendall and pressing the button, I was dealing with the pharmacist and risk management team trying to get our home Diluted Humalog back. They weren't going to allow us to use it...long story, but our Endocrine Dr. is the head of the department and out on medical leave. I asked "risk management" aka some stupid lawyer sitting behind the phone line, what they wanted us to do. He said the pharmacist would distribute the equivalent dose of their non-diluted Humalog. By the way....that meant eye-balling 1.67 units. Yes. 1.67 units on an insulin syringe. Ridiculous. Before I was forced to rip the wires out of the wall and leave, the Endocrinologist on call insisted I get my meds back and give it myself with the understanding the hospital had nothing to do with it! Which is what I wanted to begin with!!! Hospital politics. Ugh.

Anyway, Kendall wouldn't sleep, which ended up being a good thing. (thankfully my dad came up so I could get dinner, and stuck around til she was out for the count) She had herself so exhausted she showed plenty of the seizure like movements I've been concerned about. When she did finally fall asleep, she had a decent stretch of rest. (or so I thought.)

The next morning the Dr. came in to dismiss us, and went over what he could see so far. He made it a point to say it wasn't his official report, but based off of the episodes I pressed the button on, which he quickly reviewed. He said I was definitely a little "jumpy" meaning every time she had a jerk from gas or her tone, I thought it was a seizure. (didn't hurt my feelings....that's why we were there :)) Out of the 32 times the button was pressed, 28 of them were definitely not seizures. The other 4 very well may have been. When I say 4, I mean 4 spasms...like she used to have. Just a quick jerk of the arm and her head and eyes darting to the side. He said it was hard to say, because when kids Kendall's age are overly tired, they often have myoclonic jerks before falling asleep. There weren't any seizures that he could see in her sleep. Her EEG on the left side was almost normal, and her right side was a little slow. He is still thrilled with her progress (given the fact that 1/4 of her brain is a porencephalic cyst) We will continue the Ketogenic Diet Wean (now....putting her on a normal Diabetic diet by Thanksgiving) but he will definitely not be taking her off the Keppra any time soon.

I thought Kendall had a decent night, but according to everyone in the observation room....she needs to be on something for sleep. I have just become used to adjusting her every 2 hours when she tries to roll over and fusses, and she usually goes back to sleep. In the hospital, they don't allow you to sleep with the child, so I had to get up and down across the room. Apparently I was up 18 times from 11-5:30...I tend to wake up easily, so each time she shifted or kicked off her blanket, I jumped up to put it back or put her passy back in. So I think I contribute to her waking up. Now that we don't have to worry about seizures while she's sleeping, I don't have any excuse not to put her in her room for sleep. I plan to try that first, then add melatonin if she's still restless. I hate to add more meds to her already long list, but since melatonin is all natural, I figure it's worth a try.

Her enzyme results from her muscle biopsy are still not in. He asked me to give them another 2-3 weeks. Weird, since he said that 2 weeks ago....

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!)