Christmas 2010

Christmas Fun

Grandad comes over every day to read books and nursery rhymes with Kendall.

Her vision teachers brought a fun activity over and Kendall got to play in the snow!

Daddy gives Kendall rides on his shoulders every night and it returns huge belly laughs and squeals.

The hammock swing that sits in the MIDDLE of our living room still provides much entertainment to Kendall. (mostly because it is so hard for me to get her in it...she thinks that's pretty funny)

And the iPad which went kaput on Saturday and had to be replaced (ok...it ended up being the outlet we were charging it from, but I got to spend 3 hours on Saturday night at the Apple store) is programmed with Christmas greetings and other things to say. And lots of Christmas music and stories.

This Christmas Kendall is enjoying so much more than she was last year. She's fascinated by the Christmas tree and grabbing ornaments from her kidwalk, and loves all the Christmas treats she's able to eat now.

We've had beautiful weather the past several days (in the 80's) so we've taken lots of walks and enjoyed talking about the "crunchy" leaves and nice breeze.

It helps that her sugars have been under control. She's much less irritable and the pump has really given us the freedom to feed her whatever we want off of our plates. We've even made a few ice cream runs during the day!

Leaving all the test results and doom and gloom attitude behind has certainly made room for lots of living! Every day is a gift around here. Kendall loves her visitors and enjoys having family and friends around (it just has to be on her turf!)

Her latest thing way of telling us she's overwhelmed is by pulling her hair and grabbing her glasses. It is driving me absolutely crazy. I didn't think she was going to have sensory issues since there's always chaos around our house with the dogs and kids around, but it's looking more and more like she might. ugh!

My mom is doing great and gaining her strength. She's been baking cookies the past few days and walking on her treadmill! Hearing her speak is music to my ears. She only has a little impediment which will surely go away after the swelling goes down. She's one tough cookie for sure!

We're excited to spend Christmas with our entire family, celebrating the year and each other.

Back to School

I always thought I'd get my master's degree in education...then life happened, I had Kamden, got busy with teaching, then I switched careers and wanted to get my MBA, then I had Kendall, and life happened again :)

So here I am staying home and definitely keeping busy with Kendall each day. I've had a file on my desk to apply for graduate school for about 3 years now. Well, I finally did it. I was accepted and even received some grants to help cover the cost.

I will be working toward my masters in special education from Texas Tech University...mostly online. Initially I wanted to just get my supplemental teaching certification to be a certified teacher of the Visually Impaired. But after talking to a few advisers, I decided I'd better commit to the whole thing if the certification was going to get me half-way to my master's degree anyway. And now it's official. I start classes in January :)

I certainly don't know what the future holds for my family, but the way I see it, the things I will learn will only help me help Kendall along the way....so it's a win-win.

So it's back to school I go. Maybe it will be different this time around without the 5 nights a week fraternity parties and skipping classes. (sorry, mom and dad...you sent me to a private Christian University....what did you expect?!)

Metabolic Geneticist and Mitochondrial Disorder.

We saw our Metabolic Geneticist today.

Kendall screamed and cried the entire time. Probably because right when we pulled up to the office, she had a huge dirty diaper and her poor bottom was raw.

When Kendall cries during an appointment, I have to pull her out of her chair and hold her. She's gained weight since getting off the Ketogenic Diet. A lot. When holding her, her feet almost go to my knees. She's big, she's heavy, and when she's upset, the arching and twisting make it even harder to hold her. She was sweating and having muscle spasms, and so was I.

I'm not a scientist, or a Dr. I don't remember anything from high school about cells. At all. This is all just way over my head.

Our Metabolic Geneticist is an MD and a PhD. She is very soft spoken. I've liked her since the second I met her a year ago in the hospital. I don't like all of our Dr.'s but I really do like her. She's very thorough. She listens, she reviews everything and doesn't jump to conclusions.

A year ago, she was the one who did not want the muscle biopsy. We did it anyway. She reviewed the results with the other Geneticists in her office. Yes, her Succinate cytochrome c reductase was low. It was a 31, and normal is in the 50's. That means her Mitochondria isn't working correctly. That was the only thing abnormal. In order to fully understand this, a coenzyme q10 analysis was recommended by the lab. They don't have enough of a specimen left to do that. Kendall would need another muscle biopsy. More blood work could be ordered to get more specific information on the rest of it. She was willing to do whatever I wanted.

That's when I snapped. Literally snapped. I think I scared the poor woman. I have had enough. No more testing. No more answers to tests that I don't understand. No more searching for Dr.'s who can "specialize" in my daughter to further their research. I'm finished. I've lost my desire to change the world. My primary care is Kendall. That's my focus. That's the reason I get up everyday, to be a mom to my kids. To make sure they are happy and as healthy as they can possibly be. That's it. I don't have the energy to do any more than that.

Since there's nowhere for this road to lead, except labels and more tests. I'm opting out. If there were cures and medication proven to slow progression and improve quality of life, I would consider it. But there aren't. So I'm all finished.

She stopped the appointment and calmly told me that she agreed with me. She feels the same way. Kendall's file isn't going anywhere. If I'm not searching for answers, there's really no sense in putting her through all the testing. If something else comes up down the road, we can revisit it and order the tests. Then she said something I've been thinking about all day. She said one of the men in the lab had told her ordering tests is "kinda like picking your nose in public." Basically, you'd better know what you're going to do with it when you get what you're looking for. You'd better have a plan.

There isn't a plan. There isn't anything that can change my daughter's genetic makeup. Nothing. So, I'm choosing to live my life now. Without regrets. I don't care if I have a name for what she has, or a reason. CDKL5, Mitochondrial Disease complex 2 or 3... Truth is, she's Kendall. She's always been special. She always will be.

The statement above is a very easy thing for someone to say who isn't living this life or dealing with these issues on a daily basis. It is probably something I would have said to someone if I were an outsider looking in on a family facing these decisions...but the truth is, everyone is different. Getting me to this point has been a process. But it works for me. I might change my mind later a year or two down the road, and she said if I do, we'll pick up where we left off.

I did the best I could today following up on the results, but I don't feel any different. If I could change anything in this whole process, I wouldn't have done the muscle biopsy in the first place.

So no more testing. No more nose picking. I'm all finished.

Santa

I haven't mentioned nursing in a while...we recently lost hours, then recently lost a nurse, so our extra help during the week has been cut by over 50%... and with Justin traveling ALL THE TIME, it has been an adjustment for me...but I'm dealing.

Anyway, our nursing agency,Vicvicare Health Partners, (owned by a few friends I grew up with) has been a huge blessing. They have such kind hearts and always go above and beyond to make sure our family is taken care of. I like to think I get special treatment, but I know they do the same for every family. They had a Christmas party last week complete with yummy food, a professional photographer, Santa, crafts and activities for the kids and siblings. They also had gifts for each of the children under the tree...Kendall got a toy cell phone and lap top which has been a big hit around here! They take amazing care of their nurses, which I believe is why they have some of the best too. And they donated $10,000 to Camp John Marc, a camp for medically fragile children. It was a great evening. (and I enjoyed seeing my friends and their families too!)

New Accessory

We did it! We started pump therapy on Friday. I loaded the cartridge, placed the site, primed the cannula....all by myself. (with the Diabetic Educator and Justin looking over my shoulder)

Kendall doesn't seem to mind it. And the thing is absolutely amazing. I don't know why we didn't start it sooner! (guess I said the same thing about the g-button too!)

No more shots, just sugar checks and inserting the needle every three days. So far it seems doable. She's only had one low in the middle of the night, but other than that it's been smooth sailing since Friday. Tomorrow we will adjust the settings a bit so hopefully it will be pretty fine-tuned by the end of the week.

Justin's traveling so I'm a little nervous to do it on my own tomorrow...but I'm sure I will manage.

No more coolers, syringes, and glass insulin bottles everywhere we go! Just a few little pushes of a button and Kendall has her dose calculated based on her ratio and blood sugar correction. All we have to do is confirm the dose and push OK!

We can even custom set the alarms to her favorite ring tones! Isn't technology amazing!?!

Update on My Mom

This week has been one of many answered prayers for my family...

I mentioned a few weeks ago that my mom had oral cancer. The surgery she was to undergo involved cutting out the tumor and surrounding area on her tongue, replacing it with an artery and tissue from her arm, and skin grafting the arm with tissue from her leg. We weren't sure what the recovery would look like, or if she would regain movement in her tongue. We weren't sure where the cancer was, down her throat, in the lymph nodes, etc.

After her VERY LONG procedure on Tuesday, we started receiving good news after good news. They got all the cancer out, it had not spread down her throat. Her trach was replaced on day 3 with a smaller one because her swelling was going down. She did not have to have skin and tissue taken from her leg since her arm is so thin they were able to just close the skin. (she's very petite!!) Her pathology report came back that the lymph nodes were fine. She will not need chemo or radiation! Which made her smile. (well...my sister said it made her "half" smile!) The cancer is completely out of her body. Praise the Lord!!!

She is out of the ICU now and her trach was removed when she got her room on the floor. My dad said she ate a whole bowl of soup, and had ordered oatmeal for breakfast!

Everything has gone exactly as we had hoped. Please continue to keep her in your prayers for pain management and complete healing.

I am completely amazed at the Dr.'s and the ability to take out part of someone's tongue and replace it with their arm! It completely boggles my mind. But I am very thankful!

My sister and my dad have tirelessly been by her side the whole time. And once again, I have been reminded how important family is, and how grateful I am to have such a close and loving one.

I guess I underestimated how many people read my blog that I don't know about! I recently found out Kadie one of my grandmother's nurses at the nursing home reads it to check up on our family! So, Kadie..since I can't come see you guys with Kendall this week, please spread the word about my mom. And as always, thank you so much for the loving care you give my Nana daily. We love you!

I have lots of updates on Kendall, and pictures to share in the next few days...but my computer time is limited right now :)

My Marathon

"Only those who will risk going too far can possibly find out how far they can go." ~TS Eliot

I guess this post could go two different ways...I could tell you all the things that went wrong in the marathon...my knee situation, the freezing-cold-windy weather, my over-hydrating resulting in way too many port-o-potty breaks, the long 5 hours it took to finish...

Or I can tell you about all the beautiful things. The friendships I made throughout the training, the unbelievable support I received from my family at mile 10, 20, and the finish line, and from my amazing friends on the last stretch before crossing the finish line. The fact that I never hit "the wall" and ran the entire time.

The emotional roller coaster one goes through when putting your body through such extreme exercise is indescribable unless you've experienced it yourself.

Of course this to me was a metaphor of life. Continuing to put one foot in front of the other even when you don't think you can. Relentless forward motion until you see the finish line. I'm sure I don't have to point out the symbolism.

But I did it. It's done. I'm a marathoner. Probably will stick to running halves for the rest of my life, or maybe a few sprint triathlons....but it was a great experience. One I'm glad I did. And one I'm glad is over!

Living.

So over the holiday weekend I did a lot of soul searching. Guess most of it was done while drinking wine and decorating my entire house inside and out (by myself) for Christmas. I'm not a huge holiday decorating person. Honestly, I couldn't care less if we even had a tree up...but since I do have two children, it's not really all about me :) So I sucked it up and got into the attic, sorted through all of our holiday junk and decorated the stinkin house. (with a happy heart of course)

The little twinges of anger about Kendall not being "normal" always sneak up on me around the holidays. This one was a little harder than the last few because we're in a new ballgame now. I'm angry at myself for not celebrating her life more when we didn't think she had anything progressive. For not living in the moment and being thankful that things weren't worse. For complaining about her inability to sit unassisted, or hold her head up for a picture...it seems I was always wanting her to do more or work harder.

My mindset of finding Kendall equipment, or adapting things to work for her and enable her to enjoy life hasn't changed. I still plan to do all of those things. But the way I view life has changed. Between my mom's Cancer and Kendall's newly found Mitochondrial disease, I've been reminded that there are things in life way outside of our control. I choose to live my life happy. Worrying and complaining and seeking out an unattainable rainbow makes you miss the little things. Moments like Kendall grabbing a banana off her tray and taking it to her mouth. Or Kamden teaching himself a new song on guitar in his room where he thinks nobody can hear him. I want to pay more attention to those everyday things and live in the moment. I can do it. It will just require me to change the way I think about things in order to break old habits.

We had a family trip to the zoo...and loved it. We went to a friend's house for dinner...and Kendall got lots of attention. I've decided not to let this latest diagnosis define us. If anything, it has instilled in me a desire to do more as a family and spend more time enjoying Kendall. Just the way she is :)

I have a meeting today with the school district regarding Kendall's upcoming birthday and transistion out of ECI and into PPCD. Should be interesting. Oh, and a marathon this Sunday...should be even more interesting! Wish me luck!

Thankful

I have a lot to be thankful for...a loving family, friends who wrap their arms around me and pull me out of a funk anytime I get bad news, great therapists and teachers for Kendall, nurses who save my sanity on a regular basis, and I'm surrounded by love.

Life may be tough at times, but I know I am blessed. Very, very, very blessed.

We had a beautiful day. Hope you did too.

Muscle Biopsy Enzyme Results are In...

6 months later.

The original pathology report came back normal.

The enzyme tests had to be sent to New York.

The Dr. finally called back today with the results.

When you have to wait for the Dr. to call...it's never a good thing.

She had one enzyme come back low in the muscle test: Succinate Cytochrome Reductase.

It's part of the respiratory chain.

He had to spell it for me.

They recommend further testing. A Coenzyme q10 analysis. It requires more tissue.

We are starting her on 50mg of coenzyme q10 immediately.

He's sending us back to the Metabolic Genetecist we saw a year ago when her Endocrine System went haywire and we heard of Mitochondrial Disease for the first time.

She will tell us if we should move forward with the "further testing." And what else we should add to her multivitamin cocktail.

Guess what else helps kids with Mito? The Ketogenic Diet.

Happy Thanksgiving.

Exhausted

Wow. Where to begin.

After our 3 and a half hour appointment on Wednesday, we left the Endocrine office with our heads spinning. Basically, we are starting the whole Diabetes thing from scratch. She now has a ratio, a correction factor, a sick day plan, and a what to do with ketone plan. All of these things are completely new to us, and have taken a lot of getting used to.

To make a long story short, we arranged for our home health company to deliver the new formula on Thursday. I was shocked when everything arrived on time Thursday morning, and we were organized enough to completely be off the diet on Friday. We have a new binder where we have her protocol and carb counting procedures. By Friday evening, her Ketones were 0.1 on the blood meter. She has been eating everything without any aversions. All textures. Including liquids out of a sippy cup. The girl likes her food. She likes it so much I actually had to restrict her intake of the Pediasure because her sugars were running so high. For two days now she has been above 250 consistently. Tomorrow I will fax in her numbers and hopefully we can change her ratio and remedy it.

Everything has been going very well. She is more alert and enjoying food. We haven't seen any of those nasty you-know-what's in a while. If they do come back, we scrap everything and get back on the Ketogenic Diet.

Last night I left for a birthday dinner for my friend, but returned before the dinner because Justin made a mistake giving the long lasting insulin instead of the short acting correction factor. Mistakes happen... He felt very bad about it. But it then turned into a second night of checking sugars every hour. Her blood sugars went to "HI" on the meter, meaning they were over 500, and in the middle of the night they dropped so low it required more juice to bring them back up. She returned to a normal sugar at 7am, but since then she is back up in the 300's. I know we will figure out the right ratio eventually. Most of the time this is done in the hospital when a child is newly diagnosed with diabetes....they have an iv, and levels are adjusted accordingly. We get to do it in the comfort of our own home. But it is exhausting.

We will figure it all out this week I'm sure. Just in time to start the insulin pump on December 10th. My mom's surgery is December 7. Kendall has 4 specialist appointments between now and then. Oh, and did I mention our nursing hours dropped?! yeah.

So, my head is spinning. I'm extremely irritable. So is Kendall, but who can blame her with such a huge sugar fluctuation. Justin and Kamden are going hunting, so I will be on my own again. But sometimes it seems like when there is just one person solely responsible for big changes with her, it works out better. I'm sure it sounds insane, but in the middle of the night, I actually dream about what her sugars are doing. I wake up to check, and on more than one occasion my dreams are right. I also set my alarm to wake every hour, but tend to wake seconds before the alarm goes off.

*****and an update.....2 hours after i wrote this....she had a freaking seizure.

Evening Out

Justin and I happily dropped the kids off at Nonny and Poppy's on Saturday night, then headed downtown to enjoy an evening together. We had a very nice dinner and then went to a comedy club where we laughed our butts off. Our anniversary was last Thursday, so we were very happy to get out together and celebrate Justin's new promotion and our 4 years of marital bliss.

This week is a very, very, very busy week for us. Wednesday is the big day getting off the diet. We will spend a long time with the Diabetic Educators, Dr., and Nurse Practitioner formulating a plan for Kendall. She is getting her AFO's re-fitted, and we will also be demo-ing a Rifton Mobile Stander. Hopefully everything will continue to go as planned without any glitches. She's eating well, and seems to be even more alert than before.

My running buddy, Jill, and I are well on our way to completing our marathon December 5th. We did our last 18 mile run yesterday, and I recovered well. Now we begin to taper down mileage until the marathon. I have a small hip situation, and sore knees, but I feel pretty confident I will be able to complete it. I paid the gigantic entry fee last week, so I'd better be able to do it! (and before anybody chimes in about it benefiting Scottish Rite Hospital...please know they have denied Kendall services twice, so I'm a tiny bit bitter, but know they do amazing things for lots of kids! Just not mine....for now!) Either way, I'm running that stinking marathon one way or another this year!

Ho Hum...

Well, this post isn't going to be sunshine and roses.

Yesterday my mom (after all she's been through) found out that she has mouth cancer (again) She will need to have a tumor on her tongue removed in the next few weeks. They will take veins out of her arm and skin from her tummy to perform a 6 hour surgery. While in surgery they will also look to make certain the cancer hasn't spread to her lymph nodes or to her throat. She will also have a tracheotomy. This was quite the blow of disturbing news to our family, but somehow, I can't really explain the peace I have with it all. Holly and I were talking, and its like the attitude we (as moms of special children) have developed is that if something is broken, fix it, go to therapy, and move on. Dwelling and worrying don't do anybody any good. It sucks. Life sucks sometimes. But somebody always has it worse than you do.

Justin got a promotion at work. This is very bittersweet for me because it is a great, much deserved, move in his career, but he will be traveling more than he is home. That will take some getting used to for me. He travels a lot now, but not every week.

Kendall is doing very well. She's making sounds right and left and loves to talk on the phone to anyone who is available. I need to catch it on video. Her facial expressions are hysterical. She has been eating orally lots of new things. I figure if they are quitting her diet cold turkey from 2.75:1 ratio to normal diet overnight, adding a few new things before Wednesday won't hurt. She's eaten a whole serving of Gerber yogurt, a bite of a shredded bbq sandwich, bananas, diced apples, cookies, sugar free ice cream, and has enjoyed frequent licks from lolly pops! All without cream or oil. It has been liberating.

Poor Kamden got 4 baby teeth pulled today to make room for his big teeth. He's been miserable. I about died when I saw how big the roots were. Apparently they get smaller as the big teeth push on them, who knew! He's also very close to my mom, and is taking this pretty hard.

So, ho hum. Keep my family in your prayers in the upcoming weeks, please!

Video...

This might be my favorite video so far. It's pretty quick and to the point, but to me, it shows progress. Not long ago Kendall had a huge fear of horses. We so desperately wanted her to enjoy being at the barn and around the horses. We wanted her to benefit from Hippo therapy or Therapeutic Riding. I wanted her to have something special to do with her daddy. And when given the opportunity to warm up to them in her own time, she came around. Now I feel confident that in the near future she will be able to reap the benefits of horse therapy. (we just have to work on getting the helmet on her...and I'm on the hunt to find a custom boot maker who can build her some to go over her afo's....yes, I'm serious...we live in Ft. Worth!)

The contact fitting went about like I expected. I was able to get the hard lens in her left eye, but unable to get it out. The Dr. who did the fitting left it up to me. She said she can return it within 90 days if we decide against it. I said we had a lot coming up in the next few weeks (ending the diet and beginning a normal diabetic toddler diet) and I wanted to re-visit it in a few weeks. So at our next ophthalmologist appointment with our regular PO in December, we will try again...maybe.

Time Change

Kendall doesn't get that Daylight Savings Time is over. Hopefully that will change as the week goes on, but today has seemed like the LONGEST day of my life.

We went to the zoo again to try and break up the day. She did remarkably well in her chair and didn't fuss the entire time like she usually does. It may have helped that the weather is getting cooler. I guess I will remain optimistic that the more she's in it, the more she'll get used to it. Caleigh is a great role model. I'm hoping peer pressure will work.

Tomorrow we go for our second and final round of contact fitting. I hate to put her through it again, but will feel guilty if I don't at least try. Crossing my fingers.

Cranky

Don't let her cuteness fool you.

Kendall is cranky. And I am cranky because she is cranky. Some days she is so stinking high maintenance. The past two days have been perfect examples of this. She has to be held, read to, swung, or her latest favorite...playing house with her baby doll, ALL the time. I wish that she would just watch TV or entertain herself in some way. Just playing on a blanket with toys and scootching around would give a much needed break to everyone. As soon as she's left alone, she screams. She reaches up and grabs her hair by her ears and then screams louder because she's pulling her hair. It is making me crazy. When she is in her chair, she's fine. Good posture, looking around, singing. But as soon as you stop. It's all over. Same thing in the car. She actually yells "go" when we are at a stop light. So I go, and she stops screaming. It is Kendall's world. We just live in it. But it is VERY exhausting!

Contact Disaster.

Halloween went well. Kendall knocked on some doors and received a bunch of candy that she can't eat. Before we went trick-or-treating, Daddy decided Kendall needed to learn how to be a witch. He zoomed her around the house on her broom, and she loved every minute of it!

Kendall was fitted for contacts today. Because she has thick corneas (instead of round...they are a little more flat) and has an astigmatism, she was unable to wear Silisoft lenses and we had to go with RGP. Hmh.

Everyone laughs whenever I bring up her wearing contacts. I don't wear contacts. But I figured it was the next best thing because she won't keep her glasses on. I also thought it may even be an option to split the difference. Making her wear both and have her glasses lighter and thinner. But that's not the way it worked out.

We spent an hour and a half trying to put them in and take them out. We did it. But they slide down off of her corneas and she screamed bloody murder the entire time. So, the Dr. took them off and we left with an appointment to go back next Monday to try again. I don't plan to give up because the things were extremely expensive. (we hit our insurance deductible back in February, so they are paid for) And I really want them to work. But it was very stressful.

And did I mention they are the size of a pencil eraser? Well, they are. They are tinted and marked for each separate eye, but still it will require lots and lots of practice. And if we lose them in the process, we will be responsible for paying for the replacement.

I intend on thinking this over for the remainder of the week. Is it worth it? I don't know. What I do know is that since the traumatizing experience at the office today, she hasn't taken her glasses off once. I think she's thinking they may not be so bad after all!

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 :) :) :)