So Sweet

I am blessed. I can have a terrible-horrible-no-good-very-bad day, but look what I come home to. My family cheers me up. They are the reason I work hard. They are the reason I do pretty much everything I do. They give my life meaning. They are so precious. It just doesn't get any better than this (Ok, well maybe winning the lottery so I could stay home with them every day...with lots of spending money, a house keeper, trainer, and personal chef)

1st Haircut and Ketogenic Diet

On Monday we went to the Geneticist. No new news. As far as I'm concerned, at that office, that's good news. She looked at Kendall's hip again and isn't concerned. She was intrigued by our findings with the blood, but seemed more interested on what that meant for me (and the possibility of more children...a subject I'm not ready to discuss!) She wants to see us back again in 6 months. She still seems perplexed with the cataracts. We don't have a reason for them and she'd like to be able to give us a diagnosis. I hope she never can...cause that would mean nothing else pops up.

Kendall had her first haircut today! My good friend Denise did an amazing job being patient with her. As you can see, Kendall didn't exactly enjoy it. You may be thinking "why on earth would they cut her hair, she doesn't have any." But, actually she does. It was just really uneven, oh, and let's not forget about the mullet she was born with. We're hoping this will thicken it up more and help it grow! Everyone at the salon gushed and gushed over her. Before we sat down she was really hamming it up for everyone with her signature smile and "ahgggggoooo" noise.

On the way home from the hair appointment this morning, our nurse called us back. It seems Dr. Malik has decided to start Kendall on the Ketogenic diet before ACTH. We will continue with all the other medicine, but she will be hospitalized in July to get her started. We got a book a while back on the Ketogenic Diet, and I started reading it. Like everything else, it will be trial and error with no guarantees for any results. It really doesn't sound too bad. If you have any experience with it that you'd like to share, please do!

At physical therapy this morning, Kendall tested out a new gait trainer they just got in. It was awesome. She is still a bit too small for it, but when she grows I hope we can get one. Its like the stander, but closer to the ground, and when she moves a bit, it rolls.

On another note, I just want to whine a little. I hate Target now. It used to be one of my favorite places to go, but now, in order for me to browse the fun isles, I have to pass by the isle where they have ballet clothes and dress up clothes, and little girl gardening stuff with matching galoshes. EVERY SINGLE time I do, my heart sinks. I thought by now that would go away, but it hasn't. I know Kendall won't be "normal", and I have to be OK with that. But it sucks. It really sucks. It really really sucks. It really really really sucks. I want her to dance, and walk and skip, and garden. I want her to make her room messy and sneak cookies out of the cookie jar. I want her to get sent home from school with a note for talking too much. I want her to drive at 16 and go on dates(OK maybe not that) But you get the picture. It just sucks.

Summer's Here

Just to let you know, this was the baby bird Thursday morning. Yep, she flew up in the tree. Not long after that, she flew up to the fence, and not long after that, she was gone! Thank God. I truly don't know what I would have done if that bird didn't make it!

I got into trouble by Justin for mentioning when he's out of town. I guess he's afraid someone will break into our house and kidnap us when he's not here with his handgun to protect us...ha! That person would probably take us back after about 5 minutes! Anyway, I can't mention it anymore, but I will say he was gone last week, and when he returned he just rolled his eyes at our bird situation, saying that's just what birds do. But I beg to differ. This was an exceptional bird that laughed in the face of adversity, and with strength and perseverance was able to beat the odds. So there. (Justin also criticizes my use of exclamation points!!! I do that for emphasis! Its a blog people, not a term paper! My sister likes to tell me when I misspell words too grrr...sorry I don't have my MBA from TCU, or a Bachelor of Journalism from Texas...)

ANYWAY...

The past few days have been crazy. Kam finished up his 2nd grade year. He was one of two kids on the A honor roll all year. (yes, I'm very proud!) We decided since there's a chance we may be starting ACTH soon, and that means this house will go into "lock down" to be germ free for Kendall, we'd have an end of the year pool party for Kamden's class ~WHAT was I thinking?

The kids had a great time, but since grandad is a sucky lifeguard I had to dive in after a younger child in my clothes, resulting in my cell phone being ruined. I have 320+ work numbers in that phone, so needless to say, Friday was a scramble to get it all figured out. But, I did! whew! Anyway, the same child had to be rescued by Justin about 5 minutes later. After that I made her wear a life jacket. Kendall enjoyed the day with her new shades!

We finally got the stander up and working. She seems to enjoy it, depending on her mood. It is going to be a great addition to her daily routine. It has wheels, so we can push it up to a window, take her outside or whatever. It gives her a new perspective (assuming she can see!)

Justin's cousin turned 40 yesterday so we attended a surprise party for him. The whole family was there. Kendall was held by her great grandfather for the first time. Of course, I forgot my camera, so I'll post pictures when they are e-mailed to me.

Here's a video I took this morning of Kamden putting on a concert for Kendall. Ignore the fact that he's in his underwear! He played in her room with her for about an hour. It was great. I finished the laundry!

We go to the Geneticist early tomorrow. Not exactly sure what she'll tell us, but it should be interesting. In the mean time, please keep Caleigh (Kendall's friend) in your prayers this week. She was admitted into Cooks last week, and we want them home soon!

Hope you all enjoy a great summer!

Time's Up...

Well, today marks one week for Kendall's run with the max dose of Vigabatrin. No dice. I'm calling tomorrow to see what our future holds...



I have this bad habit of thinking I can ignore something and it will go away. For instance, I pretend I don't see Kendall's seizures when I'm here with her alone. We're supposed to keep a running count, but if nobody else is around, I pretend they're not happening. It doesn't work.



So, when I came home today my mom was upset about a bird situation in our backyard. We have been watching the bird's nest for a while now. Apparently, the mama bird decided it was time for the babies to leave the nest. My mom said the mom perched on the fence almost all day trying to teach the babies how to fly. Around noon, my mom went out to check on them and found one of the babies drown in the pool. She told me about the birds, but remained optimistic that the second baby still had hope. The mom hadn't left the second baby's side in hours. My mom said it was as if the baby wanted to fly, but couldn't. The mama bird (sparrow) kept flying down and walking in front of the baby to show her how. Like, "come on, this is how you do it, I won't leave you, watch me, I'll show you how." I've been checking on the baby all night, making sure our dogs don't go outside and harm it. She's still huddled next to the fence, its getting dark, and the mom is still perched on the fence cheering her on.



I'm sure I don't need to point out the symbolism. I sat in the backyard tonight and bawled my eyes out. Not just cause I think the baby bird has Cerebral Palsy, but because I think the baby bird could also be me. With my mom perched on the fence coaching me along with undying encouragement and love.



It's been a rough year. But my mom hasn't wavered, not once. I can only hope I can be the mom to Kendall that my mom has been to me.

Yes, I really did.

Because this is what happens when it takes Kendall 2 hours to eat and take her Topamax and Vigabatrin by spoon. My ADD kicks in. (yep, she has bedazzled big toes)