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 :) :) :)

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....