Friday, May 28, 2010

G-Button Question...

Hello friends.

Kendall's g-button is giving me fits. I'm not sure if it is the KetoCal formula and the extra greasiness of it, or if the button is busted on the inside. Either way, we are getting a new one on the 16th.

When her button was inserted we didn't really have an option. I guess the standard go-to button is the Microvasive. It is different from a MicKey, I guess because it doesn't have a balloon. Anyway, the plan was going to be to keep the current type, but get a new one. It really isn't time to change in size either. But I don't want to miss an opportunity to switch out to something else if possible.

I don't want a button that will pop open during therapy anymore. I also don't want one that I am responsible for changing or watching, or anything. (remember...I'm super queasy, and if it falls out, I will be going to the ER no matter what)

So, I guess we need one that isn't a balloon, but has a lid? And isn't too bulky! And won't clog with Nexium, and I don't know what else.

Can any of you guide me on what to try possibly and what to definitely stay away from?

Wednesday, May 26, 2010

Three Meals

Yesterday Kendall ate three square meals! (well...as square as Ketogenic Diet food can be)

She's been showing a lot of interest in eating. When I'm cooking, she opens and closes her mouth. I've been letting her smell all the food, and trying to match her meals with something we are having.

I swear Monday morning she was sitting in her chair as I was getting Kamden ready for school and she requested eggs.

So yesterday my mission was to feed her three times. She ate eggs, cheese and mayo for breakfast. Cheesy crackers with peanut butter for lunch (although she did gag when trying to talk with a mouthful...and threw it all up) and "tacos" for dinner (hamburger meat, cheese, sour cream, and whipped cream for dessert)

The beauty of this is that I didn't even whip out the food processor. I smashed the crackers with a spoon and she did well with the texture. She chewed the hamburger meat too. Her oral motor skills are improving by the minute.

Unfortunately, this morning her sugar was 340 and her Ketones were 7.8...which means we're teetering a very dangerous line with DKA. I plan to call the diabetic educators this morning to see what tweaks we need to make to the insulin since she's eating more. It's a little confusing, since her carbs run less than 3g/meal, and daily with KetoCal still less than 10! Insulin is very confusing. It's possible that her diluted Humalog doesn't need to be diluted anymore and she can have one full unit. That would certainly save me time at the pharmacy!


We went to see the surgeon yesterday. He told us what to expect on the 16th when she has her muscle biopsy. Pretty simple procedure. He's also going to give Kendall's button a tune up, zapping granulation tissue, and replacing her button. She'll be good as new soon afterwards...well, minus the scar on her leg :( Then, I guess, we just wait for results.

We're adding another speech appointment at Monkey Mouths each week. This will give us two seperate appointments for augmentative communication and feeding therapy. More on that later :)

Monday, May 24, 2010

All Good Things Must Come to an End!









This weekend....my friends went with my sister and I to the Train concert! It was kinda close to home, but we thought it would be a safe idea to stay in a hotel walking distance from the festivities!


It was a blast! Honestly, these are the only pictures I felt appropriate for the blog :) And we took hundreds! We spent the day tasting foods from all of the awesome restaurants in Addison. Then watched live music in the grass all day.


I felt like myself again. I stayed out super late. I laughed until my tummy burned. I was a groupie, scoring back-stage passes after the show. My sis and I were front row. Like as front row as you can get at any concert. Like hanging over the rail front row. It was one of the BEST shows Train has ever given. And we made major memories as a group....most of which I will take to my grave :)
But, now I'm finished. I think I need a break from the madness it takes following a band all over! No more concerts for me for a while...(well until they tour with John Mayer...then I'll just be going to see John Mayer!)
This Monday home from my get-a-way has been stressful. The ugly reality of battling insurance companies and fitting all Kendall's therapies and appointments in our hugely busy schedule has proven itself exhausting. I truly need more than 24 hours in a day! I guess my self-induced sleep deprivation is taking its toll, but it was so worth it!
Thanks to all my dear friends for an amazing weekend... I love you all! And we should be the next Real Housewives of Tarrant County fo sho.

Tuesday, May 18, 2010

Careful What You Wish For!



Kendall started wearing glasses when she was 3 months old. I remember the day we first put them on her well. I was so eager that THIS was going to be it! She would see! She'd start developing normally! We'd have a "normal" child with a small accessory! Little did I know!

As with most of Kendall's diagnosis, the first thing I seem to do is join a Yahoo! list-serve. You can't beat a bunch of strangers venting to one another, sharing experiences, and empathizing with you.
I quickly learned we weren't the norm, when everybody was complaining about their child ripping off their patches, or popping out their contacts, or pulling off their glasses. Not long after her cataract removal, but before her first EEG and MRI, I knew something was wrong. I actually blamed her not pulling at her glasses on her being so intelligent that she knew if she pulled at them, she wouldn't see.
After each surgery and procedure, I let the nurses put the "no no's" on her arms and left them there until we got home. Kendall didn't pull at her glasses.
Until now!
She's using her hands more than we thought she could. And she pulls them off.
Over.
And over.
And over, again!!
I lost track today after counting 43 times! She does it more when she's bored. Like when she's in the jogger, or stroller, or sitting in her chair without interaction. She pulls them down (scratching her face) and into her mouth. Like a normal baby would do! Finally!
And, like a normal two year old, she grins at you when you realize she's done it again. It's a game. And while I'm thrilled to see her doing it, it's getting really old!
So, be careful what you wish for...sometimes, you just might get it!

Sunday, May 16, 2010

Eye Gaze. Wow.

On Friday at Monkey Mouths, we started talking seriously about augmentative devices for Kendall.

There's absolutely no doubt in my mind she's a smart little girl. She has a lot to say...and if there's a way we as her family can help her communicate, you bet we're going to make it happen.

Her SLP mentioned this Eye Gaze, briefly explaining the concept to me. Kendall is already successful in making a choice in pictures, but she often doesn't have the dexterity to hit the object each time. Her arm spasticity is much more severe than her legs (uncommon...but what with Kendall isn't!?) But she almost always makes the choice with her eyes.

So this week we'll be working with Kendall to sharpen this skill. Creating a board showing choices of activities that she likes, mixed with ones we know she doesn't is our start. I'm certain she can do this. It is just going to be a long process to find out which tool is the best. Then we will start the fight to get it paid for. It may or may not be the Eye Gaze, but I know we'll find one that is a fit.

Isn't technology amazing?!?

I'm posting the video for you all to see...and so I don't have to try to explain this one to Kendall's grandparents :)

Enjoy.

Friday, May 14, 2010

KidWalk Take 2



She's slowly but surely getting the hang of it.

video




Wednesday, May 12, 2010

My Musicians :)

video video

Kamden and Kendall both love music! Kam's recent self-induced interest in the guitar has really surprised me. He's learned a few songs already, and loves to sing at the same time. Kendall continues to love music therapy. Her great therapist Nikki learned "Hey Soul Sister" on the ukulele...and it motivates Kendall to sing and play instruments! (thanks Nikki, for letting me post the video....even though you have a sinus infection and think your voice is rough...we think it's beautiful all the time :))

As much as I love my little musicians, I love big girl music too! That's why for my birthday tonight (yep, I'm 32 today) we're going to see the Josh Abbott Band in Ft. Worth...oh, and TRAIN again on May 22nd. I know...it's getting ridiculous. Who goes to see the same band perform in 5 different cities?! Um, that would be me and Kristin!

Kendall is moving right along with the Kidwalk (no pun intended.) She's getting more comfortable in it and has started to pick up her feet more. We're just going really slow with it, so it doesn't frighten her. Baby steps (ugh, there I go again!)

So, thanks for letting me brag on my talented young musicians. I'm a very proud mama!

Monday, May 10, 2010

Kid Walk Take One


Kendall received the loaner Kid Walk today. I was pretty impressed. This thing allows her to feel her movements in every direction. Unlike the stander, she can actually feel when she tries to make a move. The middle actually swivels and allows her to feel the movement in her hips. Even the tiniest motion makes her move a little.


It is very easy to push around the house too. She didn't cry at all when we initially put her in it, and even picked up her feet a little and moved backwards.


By the end of the week, I hope to post a video of Kendall moving! She is very intrigued by her new view. She reached out to the dog this afternoon....and hopefully will soon be able to chase her down!


I know this isn't the best form for walking. But that's not our main priority right now! We hope to see her initiate movement and gain some body awareness first. Then we will work on correct form!


I really hope she can prove this is something that will help her gain independence around the house...and we can order one by the end of the week...then....lookout world! I will have this child walking around the entire town :)


Saturday, May 8, 2010

My Mother...


I'm pleased to say my mom is now resting comfortably in her home tonight!


This week has been a whirlwind! Honestly, it is all kind of a blur. On Tuesday afternoon my mom looked to be on her deathbed. Wednesday was such a horrific day getting her admitted into the hospital. Thursday I discovered how much our family counts on my mom as I rushed around town getting my grandmother straightened out. Between taking phone calls from the nursing home about my grandmother's fall (she mistook her night stand for her walker and proceeded to walk into the hall then take a nose dive over it) to hearing all of the Dr.'s new hypothesis about what was wrong with my mom, I was frazzled. By Friday morning, she was undergoing an arterial biopsy of her frontal lobe.
She recovered from surgery fine. The results should be in by Monday, and we will know more. In the mean time, she has stopped the Interferon and started steroids. She is now able to chew and swallow, get in and out of bed, and get to the bathroom by herself. Thank God!
The poison still has a few more days to remain in her system, and we are praying that by the time it is out, she will be on the up and up. We will face the repercussions of getting off the treatments later on.
Knowing that she is at home in her familiar surroundings, with her own TV and tivo'd shows, makes me very relieved. She is able to coherently have a conversation...and she hasn't been able to do that in about 6 weeks. It is so nice to have her back.
The emotional strain of this week definitely set my priorities straight again. Imagining my life without my mom is unfathomable. She is the rock in this family for sure. She always has a positive word and a smile on her face on the toughest of days. She takes care of my dad, my grandma, and my sister and me on a daily basis! So I'm very thankful she is feeling better and we are a few steps closer to figuring things out for her.
My dog also got sick this week. He was moaning out for no apparent reason all day on Wednesday and Thursday. Clearly, I didn't have time to get him to the vet, so I gave him a pain killer (yeah, I have a stash from his last attack by a German Sheppard!) Miraculously he is better now. I'm still at a loss as to what happened to him!
Kendall and Kamden are doing great. Thank goodness! Kamden's old enough to understand what's going on with my mom. And they are VERY close. I really struggled with explaining things to him. Nobody likes to see their children hurt. But he really surprised me with his response. He said God would watch over her and heal her. If he didn't heal her, he'd bring her home and heal her in heaven. Then on Thursday, Justin overheard him talking to Kendall. I guess he didn't know Justin was listening. Apparently she kicked him in the face while he was swinging her...so he sweetly said to her "Don't do that again!" then proceeded to whisper..."you little bi*ch" Um, yeah.
So, I guess this week taught me to hold my family a little closer and never take anyone for granted. It also reminded me that when you really think you can't take anymore...you can! I guess when you don't have a choice, you just click on auto-pilot and go!
I'm looking forward to a good night sleep tonight! And a lazy Mother's Day tomorrow :)

Wednesday, May 5, 2010

Bad News

My mom has been admitted to the hospital. Not the one close to home. Nope, that would be too easy :) One about 50 minutes (and 2 toll roads) away.

I guess it began yesterday when Kamden, Kendall and I went to see her. Yesterday afternoon was by far the worst I've ever seen her look. I got a bad feeling. After talking to my sister and my dad last night, it was determined we were done waiting for answers.

I tossed and turned all night thinking about everything. I asked myself if this were Kendall, what would I do?! Well, I would take her to the ER to get in-patient tests and answers right away. Unfortunately, all of my mom's Dr.'s (who are each the best in their field) are at hospitals far away. So, this morning I headed over there and we called each Dr. again and waited for nurses to call back. By noon we had an appointment with her Neurologist at 3. And at that appointment, it was determined she be admitted through the ER. Thank goodness.

I'm too exhausted to get into the specifics. My sister and I have tried to analyze all the labs by me calling them in to her over the phone to look up on-line (my sis has now learned the danger of 0n-line research too!) Bottom line is her immune system is compromised and she caught something pretty bad. Whatever it was it has triggered possible rheumatoid arthritis and anemia. There's a possibility she may have Factor V like Kendall and me, and since she is regularly a very active person, and now has been in bed for 6 weeks, there could be blood clots. All sorts of tests were run and now we wait for rounds tomorrow to see where we stand.

Hospital admittance for my mom has proven to be even more stressful than Kendall. I don't really get any of this... What I do know is they are taking her off Interferon. She was 8 months into it, with only 4 months remaining to complete the cycle. Stopping the cycle prematurely is the same as only staying on it for one day. You must complete it for it to work. Unfortunately, she will likely need to start a steroid, which she can't do at the same time as the Interferon. Ugh.

So, please, please, please, keep her and her Dr.'s in your prayers. Oh, and also...my grandmother who my mom has always taken care of, is crying out for her. Talk about heart-wrenching. She's in a nursing home without a roommate and no visitors. Oh, and there are billing issues that my sister and I are responsible for figuring out because my mom can't. And my poor sister is sick again too...Today has been a terrible-horrible-no-good-very-bad-day!!

But Kendall's doing great!

Monday, May 3, 2010

Dystonia

Today at the clinic we learned 3 things.

1. Kendall has Dystonia (not Cerebral Palsy. Surprise!)

2. The muscle biopsy should be done because it may mean I need to be followed closely by a Cardiologist. And Kamden would need to know in the future as well. And there are possible vitamin regimens that could slow the progressiveness. Not everyone believes this, as we had 2 other Dr.'s tell us they don't help.

3. The Neurologist has never seen a child with Kendall's tone and movement at the age of two progress to independent sitting. (before you throw tomatoes at him, understand that I asked the question first.)

So that's it. Not the news I wanted to get. But I got it. And now we move forward. As my friend Holly said, "Kendall is still the same Kendall she was yesterday."

There was talk of starting her on medications that could potentially improve her movement disorder, but it would be complicated with the Ketogenic Diet. And being that she is so "medically fragile" we don't need to add any more medications.

I've made the calls to schedule the muscle biopsy surgery as well as her next examination under anesthesia. I feel a little apprehensive still, but am at peace with the decision.

Her AFO's will possibly be replaced with new ones with hinges. That's because hopefully this week we are going to demo a Kidwalk.

So, basically this appointment was pretty cut and dry. I wanted answers, and I left with answers.

Now we can stop getting upset with Kendall's arching and frustrating movements to the side. It isn't something we can change. She's frustrated with her inability to control it too. It's not a game. She can't help it.

We will keep doing what we're doing and meet again one year from now.

Home from Train





We're home. We're alive. We had a blast! Train was great. Spending time with my sister was even better. And getting away to have some time to myself was much needed.

Of course, I'm happy to be home.


Kendall has been just precious. I think the Nexium is starting to work. She is still arching, but not like before. She has also not been nearly as cranky.


We have our big appointment this morning at the Spacticity Clinic. I will post on that later, I'm sure.
My mom also has a few appointments this week as they continue to find out what has caused her to have lock jaw and many other things. There is a possibility we will stop the treatments all together. (if they say this is side effects of the Interferon) She needs to eat, or she too will get a feeding tube. We want her back to normal. Her health appears to be deteriorating daily, and she's ready to give up her fight. We won't let her of course...
So, big prayers for my family this week please!!