Wednesday, December 22, 2010
Daddy gives Kendall rides on his shoulders every night and it returns huge belly laughs and squeals.
Friday, December 17, 2010
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?!)
Tuesday, December 14, 2010
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.
Sunday, December 12, 2010
Saturday, December 11, 2010
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 :)
Thursday, December 9, 2010
Thursday, December 2, 2010
Thursday, November 25, 2010
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.
Tuesday, November 23, 2010
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.
Sunday, November 21, 2010
Sunday, November 14, 2010
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!
Thursday, November 11, 2010
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!
Monday, November 8, 2010
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.
Sunday, November 7, 2010
Saturday, November 6, 2010
Monday, November 1, 2010
Sunday, October 31, 2010
Friday, October 29, 2010
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 :)
Tuesday, October 26, 2010
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.
Monday, October 25, 2010
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.
Sunday, October 24, 2010
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.
Thursday, October 21, 2010
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.
I'm singing your song
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
I'm singing your song
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.
Tuesday, October 19, 2010
Monday, October 18, 2010
Sunday, October 17, 2010
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!
Wednesday, October 13, 2010
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 41Triglycerides 241 (super high!)
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?!