Dysfunctional.

We're a mess.

Kendall won't keep her glasses on.

Kamden is the only 10 year old I know who won't wear a costume for Halloween...other than this Karate Kid headband.

And as we were getting ready for a costume party on Friday night, my husband suggested we forgo our original costume ideas and instead I go as Fred and he Wilma (due to our height difference) Once I saw him in the dress, there was no turning back.

Hopefully tonight we can pull it together and have some resemblance of a normal family :) But I won't hold my breath. And Kendall's getting fitted for her contacts tomorrow!

Petting the Dog...

Here's a video of Kendall petting Cooper. This was actually taken the night she went into the hospital last weekend! As you can see, she seemed completely fine and was thoroughly enjoying herself petting Coop and being entertained by Nonna and Grandad :)

Kendall is recovering very well. She just has a little cough right now, but is back to being her energetic, high maintenance self. Pulling off her glasses has become her favorite past time, along with throwing toys off her tray. She is a stinker...but I'll take a healthy stinker any day :)

Strep

Well, thanks to my blog...and detailed documentation of Kendall's life and medical issues...I was able to diagnose her with strep!

Ok, well, the Dr. confirmed it with a swab today at the pediatrician's office.

She had a very rough afternoon yesterday. So much so that I actually had a bag packed to go back to the hospital. I caught the Dr. right before closing and he insisted we start her on another steroid. When I went to get the prescription filled and take Kamden to guitar, she started to sound better. She was breathing normally after a breathing treatment, so I never gave her the steroid.

She had trouble sleeping, just seemed really miserable. Then this morning I noticed that she had hives. All over. So I looked back in the blog and decided it was either the Xeoponex neb treatments or Strep. I called the Dr., got an appointment, and the swab in the office came back positive.

She's been running a low fever, had high sugars, croup, and has been extremely lethargic. Tonight she looks plain miserable.

And to top off our perfect day, we found out our Nursing hours have been cut. I knew nursing was never a guaranteed thing. I've always been thankful for whatever extra help we can get. I have also heard they are "cleaning house" and cutting a lot of hours back, particularly seizure kiddos, but the thing is, they said it was because she's not having seizures anymore....which....she actually is. So, whatever. We'll appeal and pray it all works out, and if not....well, I guess we'll just make due. What other choice do we have?!?

It's been a quiet week otherwise. We canceled all therapies and have stayed in our pj's.

Oh, and the good news is her Hemoglobin A1C came back as a 7.4 which is an average blood sugar of 160. In the hospital they did an electrolyte panel on her and everything looked good, but her potassium was a bit high. So, we are continuing with the wean of the diet. 2.75:1, so far so good.

Keep us in your prayers.

Home

Thanks for all your thoughts and prayers. We are home now, and Kendall seems to be doing better. The steroid did make her sugars go through the roof, but we feel comfortable with her correction factors for sick days now. She's definitely not your typical Diabetic due to the diet, so I do understand that in the hospital it puts everyone in a tizzy. Ultimately the decisions come down to Justin and me. We are the ones who have to worry about checking her sugar every 30 minutes after a large correction when she dips into the teens or 20's. Nobody wants to be responsible for that and I get it. All the more reason to come off this diet and start fresh.

We thought we were going to end up back in the hospital late last night. She gets worse at night, but with lots of repositioning and a cool mist humidifier, she made it and is all smiles this morning.

I made a quick run home on Sunday at 4am to gather the rest of her supplies. With Kendall we have to have lots of things, so when we rush out to the hospital without prep time, there's no way at all we could pack everything. Her formula has to be measured out with a gram scale, she uses a very special meter that reads ketones as well as blood sugars and they are calibrated with a special stick each time you open a pack. We keep extras of everything we can, but some things are just impossible to duplicate.

Our problems with the hospital are that not only can they not provide the correct insulin, they will not allow us to use our own. They will use our brand name Keppra, and they have the emergency Klonnopin and Diastat on the floor, but insulin is considered too high risk. They don't trust the pharmacy that prepares the U50 insulin, and they only have U10 humalog. Since Kendall uses half units of insulin on a 30 unit syringe, it is impossible to measure a half unit. All of this will be fixed when we start the pump and get off the diet.

Justin took the reigns this time at the hospital and insisted she not have an IV when she didn't need one. He also told them he wasn't going to wait around for our daughter to go into DKA while the hospital "played grab ass." and proceeded to give her the shot himself! (it was nice for me to not have to be the bad guy!) I was very thankful to have Justin there. He came home early from a hunting trip...and this was not the way he expected to spend his weekend, but he took it all in stride. Thankfully he can hold her and sleep at the same time, so I could run home and gather everything up. I can handle no sleep (thanks to lots of all-nighters in college) and still function, but the boredom of the hospital in a small room makes me crazy. Justin also helped with that by playing charades with me :) :) :) I have never laughed so hard in all my life.

So now we move forward again. Breathing treatments at home and probably a trip to the pediatrician's office to check out her ears and throat later in the week. I also hope to get her enzyme results this week and latest Hemoglobin A1C results today. She is a full time job.

Admitted

Kendall has now been admitted to the hospital...

I'm not sure how this all happened, but she started with a croupy cough out of the blue around 10 Saturday night. It got bad really fast. I expected her to just have a quick visit to the ER, have a treatment and then come home.

But she hasn't responded to the treatments, so we have to be admitted. Her sugars are high due to the steroid. We are in the freaking hospital and I had to call the diabetic educator to find out what to do. It is simply ridiculous. And now we find ourselves without all of our supplies, pump, brand name keppra, ketocal, diluted insulin. What do you think the chances are we will have those things by tomorrow morning? Yeah. I won't hold my breath.

So say a prayer for sweet Kendall. Getting rid of this quickly and without any major complications would be awesome.

Songs of Love

This post is overdue....but things have been a bit crazy for us lately!

I'm sure I've mentioned before how much Kendall loves music. She has it on all the time. Kid songs and mommy music usually top the charts, but she does love her brother's sweet voice singing along with the guitar.

She can usually be consoled with music too. She listens to the words. (like in "if you're happy and you know it" when she nods her head or tries to clap her hands)

Kendall's sweet Aunt Val arranged for a song to be written just for Kendall through Songs of Love a non profit organization that provides the "Medicine of Music" to kids all over. Steve Schuffert wrote and performed the song just for Kendall and it is just precious. Kamden was excited to hear his name in the song too.

So, big thanks to Aunt Val for arranging the song and having it sent to us. I can't upload it to the blog; however, it is available for our friends and family to download for a small donation by visiting their website and entering Briggs in the last name field and 22064 in the record number field.

Here are the lyrics of Kendall's Song

She likes playing peek-a-boo with Mommy.
Reading "Bunny my Honey" too
She likes playing patty cake with Poppy
Swinging and swimming too.


Kendall, Kendall
I'm singing your song
Kendall, Kendall
This song's for you.

There's Nonna and Grandad
Mommy, Daddy, Kamden and Nonnie and Poppie too.
She likes riding a little horsey on Daddy's knee
She's as sweet as sweet can be

Kendall Kendall
I'm singing your song
Kendall Kendall
This song's for you.

So, a big thanks to Aunt Val for thinking of us, and giving us a song we will treasure always. Kamden's already trying to learn it on the guitar :)

If you have a chance, check out the website, make a donation, or nominate someone you love who could benefit from music too.

Getting Better

Last night was another long one. Sunday night the crazy sugars were definitely my fault, but last night was not! Kendall has been running a low fever, we think because of teething, the flu shot, or a little virus running around without symptoms. Her urine is fine, so we've ruled out a UTI, and she doesn't have blood in her urine, so we've ruled out kidney stones... Either way, whatever it was made her sugars soar into the 400's around bedtime. Her ketones read "high" on the meter, which has never happened before. I called the Diabetic Educator who paged the Dr...who called and told me to go with my gut! My gut being not to give her a whole unit of humalog in addition to her sick day correction. Instead, I only gave her a half...and thank goodness because she came down dramatically and by 2 am she was in the 50's...if it's not one thing its another!

My dad came over and spent the night to help out. I thought we were going to have to go into the hospital, since her original correction didn't lower her out of the 400's. She was peeing a lot, and I had to give her 60ml bolus feeds of water to keep her from dehydrating. I was also afraid that since I hadn't slept at all I wouldn't wake up to my hourly alarm to check her through the night...I was right! But my dad didn't wake up to it either at 2, so she went unchecked until 4! But she made it through the night, and she's OK now. That's all that matters.

And thank goodness my husband is coming home tonight! I fully intend on having a glass of wine and watching the Rangers game!!!

***these pictures are past due. I just wanted to share Kendall smiling through all the crap she endures! And the picture of her and Caleigh at the zoo...maybe one day we will have a picture of those two girls both looking at the camera and holding their heads up!

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 :) :) :)

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....