Friday, May 28, 2010
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
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
Tuesday, May 18, 2010
Sunday, May 16, 2010
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 :)
Friday, May 14, 2010
Wednesday, May 12, 2010
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
Saturday, May 8, 2010
Wednesday, May 5, 2010
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
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.