Friday, September 23, 2016

Irritable

I think this kid is about the cutest thing ever! Of course I am partial, but I think most people would agree she's got some looks. I can claim the eyebrows, everything else is daddy. Still wondering when her eyes might turn blue...

So, she looks like such a nice kid here, but in actuality it has been a rough couple of weeks. She has been so irritable, cries at the drop of hat, been pinching herself at home and at school, just plain unhappy.  Ugh, I'm about to go crazy. This is not my kid.

I know for sure it's nothing to do with puberty, is it the terrible twos that never happened? Is it typical for a kid to be moody at 10 years old?  I don't know what the heck is going on.

We went to see the orthotist Monday to get her feet molded for shoe inserts and that was total hell!  I am so glad she didn't kick him, she was a nightmare. He thought that it is due to the change in weather - from 110 degrees to 99?  Well, he would know because he deals with these kids all the time so that is what I am going with. I am assuming it's just a matter of time until she gets used to the barometer change, then of course it will get cooler with more barometer changes..

Irritable is the best word I can think of to describe her, however, I once had a good friend tell me that most people use this word wrong.  Or maybe it was the word irritated, or aggravated. Either way I am aggravated due to my child's irritability.

 If you read this blog you must realize that my grammar and use of apostrophes and commas, etc.. are not my strong suit.  AT LEAST I DON'T USE ALL CAPS!  or no caps, little i's and no punctuation that is the worst

Well, I am hoping it will be a good weekend with Katie and she can go back to her sweet self.  I think I've aged a few years these last couple weeks... 

Wednesday, September 21, 2016

Adaptive PE



Katie's Adaptive PE teacher at school is working with her specifically on goals from her 3 week summer program.  Here is a short video of Katie in action.


Adaptive PE at school

Wednesday, August 24, 2016

Soccer

Katie is back at school and is doing very well.  I have heard from several teachers and therapists how well she is walking, much more balanced and upright. This is such good news to hear after we did the therasuit therapy with her, I think she is doing awesome. She seems to be walking slower and a bit more calculated. Here is a video of Katie doing a little homework before school this morning.




Wednesday, August 3, 2016

Therasuit info

Just got back yesterday from 10 days in Colorado with Katie.  The flights went well, thanks to a few sticker books!

So, this therapy...

Therasuit therapy is a specialized therapy that uses a suit which has elastic bands on it that can be tightened where the child needs more input.  It basically puts you in your best posture.  The therapist then does exercises with you in it for three weeks (an hour a day) and the thought is that it takes your muscles (and maybe brain, too?) three weeks to develop and remember these new movements. The hope is after the three weeks you will walk better and have better balance, etc... without the suit on.

Tom, our therapist - who is REALLY awesome! - also spent an hour a day with Katie without the suit on, doing specific exercises with her laying down on a type of massage table using pulleys and weights and resistance to strengthen her gluteal muscles.  He said he could tell she wasn't using her gluteus minimus muscles (and some others, too) when she is walking.

If Katie wasn't walking at all then he would spend another hour doing some other exercises.

Here are some videos of Katie:


strengthening legs with pulleys and resistance

last day in suit

last day without suit on

I have some homework to do with her: throwing socks on the floor and having her pick them up one at a time (for squatting), having her walk up and down curbs and on and over things hoping that she will know the difference between on and over, and having her walk slowly instead of racing forward trying to catch her legs up to her upper body. Also, having her kick a ball down a hallway or in a grassy area to work on focusing, which she could use some help with.

Katie is doing so well!  While visiting my family in Colorado we didn't work on this homework as much as I will here at home, but my mom has stairs, so we were able to work on going up and down those quite a bit.  My mom also pulled out some musty old dolls that my sisters and I recognized after 35 years and Katie enjoyed picking them up, hugging those scary things, and putting them back in the box.

My whole family though Katie was doing really well and could see a difference in her balance and stability.  I can't say enough about this therapy, it was just amazing!  We may have her go back at some point for a refresher.

For now, homework.



   

Saturday, July 9, 2016

Therasuit

Katie started Therasuit therapy.  I will post more videos and explain about this incredible therapy sometime this week.  For now, here is a very short video of Katie walking in this suit, much more straighter and controlled!


7/21/16 Ok, I will work on getting this info posted but it may be a while. Just finished with therapy today!

walking in Therasuit

Wednesday, July 6, 2016

Poem

Well, I am out of time and this entry is not cooperating! I'll have to fix it later.  


Usually the poems don't get me teary-eyed, but this one did. I think a lot of parents of special needs kiddos can relate to this.  



You miss the things I haven't done,

the goals not scored, or races won.
The steps my feet have never walked,
the words my lips have never talked.


In my wide eyes you know my fear.
You take my hand and hold me near.
In children, all around you see, the child that I may never be.
Not so able, tough or agile, often tired and much more fragile.
You see the tears I've often cried, and cried them with me, side by side.
Your heart is heavy for my trials, but you wear it well,
with weathered smiles.


I know that you know, I am enough.
But I know the bad days can be tough.
You thank God for giving me to you,
but you're sad for all I cannot do,
and not because you feel let down my me,
but you can't help wonder how I'd be.
if I could do what others do,
like ride a bike or run to you
.

You think of all the things I'll miss
first dance, first love,
first date, first kiss.
Yet here I am, as I should be,
not missing out on being me.


Do not fret or worry so
and make your spirit tired with woe.
And when those nights are feeling longer,
lean on me until you're stronger.


Hold my little hand in yours,
peacefully we'll pass the hours.
For all we have is one another,
special child and care worn mother.


Nothing matters more you see,
than seeing all the life in me.
I don't need to be able to,
do the things that others do.


See the words I do not say,
in the smiles I give you everyday.
when I'm tired let me rest,
with my little head against your chest
and for that moment in that peace,
let your loving worries cease.


Look at what I can achieve,
and celebrate me, do not grieve.
Please do not be sad because,
I'm not the child I never was.
different isn't less you know,
and you're the one who told me so.


and somedays will be hard to take.
And you'll feel as though your heart might break.
but we'll bounce back,
we always do.
Because you've got me and I've got you

Friday, June 3, 2016

Amazing night



Look at all of the MOVIE STARS in this picture!  OK, maybe you don't see  Justin Timberlake or Ashton Kutcher, but they don't hold a candle to these people. No offense Justin and Ashton, but here is a group of top notch medical professionals that may change the world some day.  Superstars in my eyes, for sure.

This incredible group of people came to our house to observe and interact with Katie.  From left to right: Paul, Me, Katie, Isabelle (TGen Scientist), Keri (TGen Nurse), Dr. Swanson (Northwestern University Scientist), Dr. Guzman (Northwestern University Scientist), Chitra and husband Dr. Narayanan (TGen Neurologist), Sampath (TGen Scientist) , Kavitha (TGen Scientist) and Newell (TGen Clinical Research Coordinator).

To have these people in my home was surreal. Thank God Katie took a decent nap that day and was in a very good mood.  She was bringing them toys, giving lots of hugs, scratching backs... it couldn't have gone much better.  It was nice that they got to see her in her own environment, doing the things she does and acting like herself - imagine a few very loud screeches of happiness and even a quick bit of dancing (by Katie) before they left!

The scientists from Northwestern study kainate receptors and this is an issue with Katie's gene mutation. They came in town to tour TGen, meet the staff and to see us.  I asked Dr. Swanson about the other people who have the mutation and he said no one else has this exact mutation, just Katie as far as anyone knows. These other people who come up when I search the internet for GRIK2 mutations (Glutamate Receptor, Ionotropic, Kainate 2 which is a protein coding gene)  have a deletion or some other issue on this same gene, not a mutation like Katie's. I knew my kid was one of a kind, but jeez!

This was a very casual meeting and I think seeing Katie in action was such a benefit. I was asking Dr. Swanson if he can test the mice (once they are ready to be tested) for things I notice about Katie such as she has never scratched an itch, or if her hair is in her face she will not brush it away, ever. He said yes, he thinks he can.  I will have to make a list of her idiosyncracies and email them to him.  Pretty cool he can test for those things once the mice are ready.

The main thing I took away from this meeting was how much and how fast science is advancing.  I hope that in the future Katie and others can be helped by the new advances science might have to offer.  I'm realistic and not expecting miracles, but still, hope is what keeps us going!

Tuesday, May 24, 2016

Exciting!





















Feeling patriotic today!


I am so excited - we are going to meet with the scientist from Chicago along with our TGen doctors and some of their scientists, soon!  I will write about it after the fact. This is just incredible.

Monday, April 25, 2016

Spinning

Getting old sucks.  I don't think there is any better way to put it.  I am posting this entry because it's been a long time coming and I feel like this is a good time to hold myself accountable.  If I put it out there maybe I will stick to it. I have a sister and a good friend I have known since 4th grade who I know read this blog.  Maybe they can help hold me accountable.  Mindy and Mary I am talking to you...

I always assumed life would get easier when Katie got older, that she would be able to do more things, walk better, talk.  However, in reality it is like I have a ten year-old toddler who I have to watch every second.  She is in diapers and fights when I change her diaper or comb her hair or brush her teeth.  She just gets bigger and I just keep getting older and less fit, my joints hurt sometimes and I guess I can't blame the baby weight any longer.

So I went to a spin class today and really like the instructor and his music - that makes a big difference.  Bad music is the worst in spin class.  I have had good intentions with the gym but in reality, once a week is not doing me any good. I am planning on doing this class more, and yoga and weights, and cutting down on volunteering for a million things at Katie's school and elsewhere.  Too bad I can't cut out laundry and cooking.

  I need to lose about 15 pounds and just want to be in better shape, especially with Katie to take care of.  I think, what if something happened to me, who could do what I do with her?  Or maybe they would do a better job than I do?  Paul is a great dad, but he is no mom.  He works a lot and although I do his data entry (ho hum), right now is not our busy time of the year so I have no excuse to not take care of myself.

I am hoping now that I have posted this, that I will take it more seriously so I can make it to 52 without the aches and pains.  And that I will finally be able to fit into the 70% of the clothes in my closet that haven't seen the light of day in years.

 I will be making a salad tonight... goodbye pizza and cookies, I'll miss you.

Yes!

Tuesday, April 19, 2016

Not again

Here we are once again with the tongue situation.  Katie has had her tongue hanging out, not constantly- but it's out a lot and I just got an email from the teacher noting this. They worry about her falling and biting it - it's been out about a week.  Doctors don't know why this tends to happen twice a year but my feeling is that it is probably due to the change in weather.  When she is really tired it will be out, usually before bed, it's as if she just loses all of her muscle control in her mouth, weird!

If you have been lucky enough to have been here in AZ. sometime in the last few months - we have had absolutely beautiful weather!  Now, it is getting into the 90's and I think maybe that is affecting Katie. 

 Or, maybe it's a growth spurt -she did eat 3 taquitos, half a chicken breast, a hamburger, broccoli, 2 of those cutie oranges and an apple last night for dinner -no kidding! Crazy little eater... that is not her usual food amount - have you seen my thin little kiddo?!  But she wouldn't eat breakfast today and threw her ham and toast on the floor, nice.  Guess she was still full. 

I always document her tongue issues so I can keep track.  I think it has been over a year so I thought we were out of the woods, damn...


update:  05/10/16 I think this episode is finally over, 3 weeks.


Here she is pre-tongue episode. Cutie!