When it Rains it Pours

I'm sleep deprived. I mean really, really, really, sleep deprived. I'm using this blog this morning as my outlet. Justin's out of town, my sister won't answer her phone, and it's too early to bother anyone else!

Kendall's been very fussy. Yesterday she started having seizures again after her nap. She's had a low fever, but her ears look fine, and she's not congested at all. She sounds a little like she may have a sore throat...but I can't ever tell.

I ran 16 miles late yesterday afternoon as part of my training program for my upcoming Marathon. I drank plenty of Powerade and had 3 helpings of Gu...but apparently I didn't get enough water, because I've been achy and had a horrible tummy ache since I got home last night.

Being dehydrated (even if it's my own fault) sucks when you're taking care of a cranky Kendall alone. My head was a little fuzzy and during her nighttime routine I mistakenly gave her her morning dose of insulin instead of her bedtime dose. It's a pretty significant difference. I called the Diabetic Educators, and was instructed to do sugar checks every hour of the night. Even staying on top of it, her sugars dropped into the 20's. Super scary. So between me running to the bathroom to throw up and checking her sugars and watching for seizures all night, I didn't sleep at all.

Then I just got the text that our Monday nurse's car battery is dead.

Super.

I'm going to muster up the energy and get Kendall to the Pediatrician this morning and have her repeat blood draw as soon as I feel she's at a point where I can safely take her in the car without a very low blood sugar scare.

I'm feeling sorry for myself today. I know I'm blessed in so many ways, but seriously, normal would be really nice now and then. I just want sleep.

10 Years Old

My baby boy is now a big 10 year old. I can't believe it. He came into this world 10 years ago yesterday, with trouble breathing...(he swallowed too much amniotic fluid) and had to be whisked away from us right away. I remember holding him for the first time and him sneezing over and over. Yesterday morning, I had to laugh when he did the same thing.

We celebrated his 10th birthday on Friday night with a Survivor themed sleepover. He had 10, yes 10, boys over to join in the celebration. They set up camp in the living room and were rambunctious until about 2am. They had a blast, but it is something I will NEVER, I mean NEVER do again!

Justin was busy taking care of Kendall, so thankfully my mom and dad and aunt Kristin and Uncle John were able to be there to help. It seemed like nothing went as I had planned...but the kids seemed to have fun. I did a horrible job taking pictures, which I'm pretty disappointed with.

And true to our family form, it was a bit of a circus. No, not the sparkler candles smoking up the house and burning the cake, or Chloe and Cooper stealing pizza, donuts, and popcorn, or Cooper's non-stop desire to hump pretty much every kid...resulting in non-stop laughter from the 9-10 year old kiddos, or Kamden's vomiting after playing a game where they had to dig through a nasty mess bowl to find objects...those things I could handle. What I could not handle was the child who took a dive into the metal stake holding up a tree in my front yard. And the gigantic goose egg that appeared immediately, and the two scratches on his forehead sent me into a tail spin. Then, as I tried to call his mom, my blackberry was re-booting so I couldn't find her number. Someone else's kid at your house with a possible concussion....not cool. Fortunately, I did get in touch with his mom, and she came to check him out. He stayed and looked so much better the next morning. But still...I was traumatized. It was, yet again, a reminder that no matter how hard I try, things don't always go as I plan.

So, happy birthday my sweet child! I love you and am so proud of the young man you've become. You are a very sensitive, loving, and smart child. I wouldn't change a thing about my blue-eyed, long haired, advanced red belt in karate, guitar playing, shower singing, non-teeth brushing, baby boy. You bring this family so much joy :) I love you dearly.

Seizure Video

I'm posting this video for our Dr. to see Kendall's latest seizure. It lasted about 20 minutes total. I started the video after seeing 4 spasms. They got worse before they got better (much like my bad language in the video.)

We spent close to 2 hours in the Endocrine Clinic today going over Kendall's latest lab results and forming a plan next month to switch her to a "normal" diabetic diet from the Ketogenic Diet that gives units of insulin relative to the amount of carbs she intakes. This will be a very big switch for us. We have been in the groove of the Ketogenic Diet for 15 months.



Her Hemoglobin A1C results did not get run (we have to go up there tomorrow and have them run again...) but I suspect it will be higher than it should. Kendall tends to need a very small dose of Humalog when her sugar is over 200. If we go any higher than one quarter of a unit, she will drop below 40. So, we haven't been correcting her unless she is over 300. I found out today the normal range for a 2 year old is between 100-150.



The rest of her results are as follows:

Total Cholesterol 188

HDL 41

Triglycerides 241 (super high!)

LDL 99

Cholesterol/HDL Ratio: 4.6 N (no earthly idea what that means)

I really would have liked to see her get off the diet. I wanted it to happen before April (when she starts PPCD.) The Nurses, Diabetic Educators, and NP's in the Endocrine Clinic really have to stop, shift gears, and think things over every time we call. Today was no exception. Kendall is famous up there, and we had 4 visitors on the same topic and left without answers. Our Dr. is out on Medical Leave but is expected to return hopefully next week! He's the only one who gets it and can ease my mind! Ketones make your body more resilient to insulin (which really confused me today) so starting the pump will require a lot of supervision. Developing a baseline without the Ketogenic Diet is imperative to starting the pump.



So today we found ourselves between a rock and a hard place. We hate seizures. But uncontrolled Type 1 Diabetes can be disastrous too. (Thank you Dr. Oz for that Oprah show that has scarred me for life)



How ironic is it that after an afternoon of stress about being on the diet and coming off the diet...we come home and she has a darn seizure?! Ugh.



On a positive note, she had a great night sleep last night. Maybe the Melatonin will work for her after all?!

Do I See a Pattern?!

Uh-oh. I guess we should be careful what we wish for! (see post below!)

We went to a pumpkin decorating party last night, but Kendall was having no part of it! She cried being in her chair, she cried when I was holding her, she didn't want to participate. Honestly, this was the first time I've seen Kendall react to other kids negatively. She loves when Kamden is around and his friends all talk to her, but it is usually on her turf. I think she was on sensory over-load as the other children were running and playing all around her. It was too much. So we walked her back to our house, and let her spend the evening with her daddy while Kamden had a great time at the party. Today we resumed our efforts to have her decorate her pumpkin, and she was all smiles.

I was (and usually am) very proud of the way Kamden watches out for his sister. He was concerned that she wasn't having fun. He didn't leave her side at first. And he really wanted her to enjoy the party. He was also very understanding when we had to go to plan B. He also did a great job explaining to some kids why Kendall was sitting in a wheelchair. (in a 9 year old way!)

Justin was out of town almost all last week, but I managed to survive. My kids were bathed and fed everyday, but that's about it. My house is a complete disaster. Thankfully, he's home safe and sound...and we have a fun night out planned tonight while Kendall goes to visit her grandparents, and Kamden goes to a carnival with Aunt Kristin and Uncle John.

Today marks the 1 year anniversary of Kendall's g-button. Which, by the way, was the best decision we ever made!!!!

Amazing

I swear. Every single day this child amazes me.

We had a very busy morning beginning with speech at 8am, then our dietitian and eci friends came to visit, then we had OT, then we went for a blood draw.

But Kendall was unfazed. I think she enjoys being busy in the mornings! Ok, I know she enjoys it. She loves to go, go, go.

I snapped this picture of her while laughing hysterically. When the play dough hit Kendall's hands (see....see it....in BOTH hands at the same time??!?!?....she picked it up off the tray on her own!) she began working very hard to get it to her mouth. When she did, I thought she was just going to smell it, but she took a gigantic bite of it instead. It was the funniest thing ever. The expression on her face, and how proud she was made me laugh so hard! She's a stinker.

I've tried to forget that this is a no-no with the diet. Her sugars and ketones are fine so far...but I couldn't take it away from her. I was way too proud of her.

BOTH hands at the same time, bringing something to her mouth, BITING and CHEWING it...amazing :) :) :)