Tongue issue again

Here is Katie looking a bit dapper, I like this picture. She really should be on a runway.  We have had the tongue incident again, this time for about a week so far. It just sticks out. All day. I think she might be at the end of it, but still have no idea why.  This has happened before (3 times) and I see I have noted it in my blog.  We go to the doctor today so he can tell us he has no idea why, ha ha! I thought maybe it was due to allergies so I bought some kids allergy medicine, but no luck. Tongue still out.  Last time I wrote that maybe it was due to a growth spurt - she has grown so much in the last year - I really don't want it to be that. Longer legs means a longer fall to the floor.  

Update:  it was 3 weeks of the tongue out and of course the Dr. had no idea why!

Saying

Ok, so I am over feeling sorry for myself now.  Here is a saying, or blurb, or whatever you want to call it that I found and put on Katie's picture.  I just love this saying!  I can tell this picture was about a year ago before Katie got her front teeth in.

I do believe she will talk one day - she has been sick for a week and I think - because she is feeling a little needy - she has been saying, "Mama" a lot, and I mean a lot!  I LOVE it!  Paul's jealous...

Ups and Downs

Below is a link to a story about a friend of mine.  You may have heard this story regarding Kelli Stapleton and her daughter, Issy.  Issy has autism and is violent.  Kelli - like so many parents, did everything she could to help her.  I won't go into detail - you can read the story -  and of course I don't condone what she did, I think she was at the end of her rope with trying to get her daughter help through the state and not getting what she needed, and she just hit bottom.

Kelli and Issy Stapleton Story

Kelli has a blog about life with Issy: The Status Woe

I write about Katie and post all these happy, cute pictures of her, and usually she IS happy and of course always cute!   But I don't write so much about the times that are not so wonderful.  I think it may be human nature just to look on the bright side and brush off the bad times, not wanting to bother people with all your woes... and maybe that is why my friend Kelli got to her low point.  

I got head-butted last week (it happens occasionally but usually I can move out of the way) and just burst into tears because my nose hurt so bad.  Thank God it wasn't broken but man, it hurt like hell!  Katie doesn't mean to do it - I know that.  It seems to be some kind of uncontrolled action, like she doesn't have great control over her body movements.   She is either mad or excited, and her body just lets loose and she ends up flinging her head around or kicking her legs and hurting someone, usually Mommy! Well, this is my theory anyway, since no one else really has one.

 Another example: recently at the eye doctor when I was holding her legs and arms as tight as I could and as he came at her with the light, she went bananas.  Even though I told him we needed someone else to help hold her down, "Oh I think we'll be ok," he said.  I left with a fat, cut lip bleeding like crazy, head-butted again, this time in the lip.

I can understand Kelli's heart-breaking story and maybe where she went off the deep end and lost it, not saying what she did was the answer of course, I don't think anyone would think that taking out yourself and your child is the answer. Ever.  But to know her story is one that is sad and scary.  Issy is a violent teenager with autism who has put Kelli in the hospital more than once with brain injuries, and also put others in jeopardy.  Just what is the right way to deal with a violent child with autism who most likely doesn't understand what she is doing?  I can't even imagine.  I have nothing like this at all to deal with, and although Katie is not a violent kid (just an occasional head-butt or kick) it is not easy having a have a child with any kind of disability.

Lots of times I think:

 If Katie could talk my life and her life would be SO much easier!

 If Katie wasn't still in diapers and constantly constipated...

 If Katie could get herself into her car seat herself...

If Katie could sit in a regular chair at the table...

 If Katie could... it goes on and on.

We worry about who will take care of her when we are gone, meaning dead. We have short vacations covered.  Of course we do have plans for this just in case, but will someone else do what I do for her? I had Katie at age 41 and she is almost 8, you do the math.  (I hate math).

 Will she ever talk?  Will her balance get better?  Is she going to fall and break a bone or knock out teeth?  I worry that I might die of some terrible disease - then what? What if I get early Alzheimer's or hit by a truck? I have stepped up my exercise (spin class anyone?) and vitamin intake and am trying to eat better - maybe that baby weight will come off one of these days!  But who is going to take care of her like I do?  Is someone else going to search the internet hoping for some clue and maybe help for her issues?

 Paul is a great dad - he is the "fun" one.  He makes crazy faces and wrestles with her on the floor, comes at her like a zombie - she loves it. I am fun too, but I also am the one to brush her teeth, take her to the doctor's appointments (not fun at all), brush her hair, give her medicine - and lots of these I have to pin her down on the floor and sing to try to make it fun.  And me singing is not fun.  Paul singing is just scary, or hilarious depending on how you look at it.  Paul is somewhat of a workaholic (I mean that in a very good way) so I do most of the not so fun stuff with Katie.  And thank God he is so that I can be here for her when she gets home from school, etc...

I am sure a lot of people think I have it easy because I live in a nice house and don't work, and, yes I do have a pretty good life. Although I do do Paul's data entry - mindless work however it needs to be done by somebody, right?   That's work! But I would give it all up and live in a shack made of sticks without running water if it would help Katie.  I would trade that in an instant.  

It's just hard, you know?  You never think your child will be the one with issues. A child who can't tell you they love you, that just sucks.  And although I never feel sorry for myself because Katie is a wonderful and loving kid 99% of the time, who does tell me with hugs and slobbery kisses that she loves me, I worry a lot about her future.  My goal is to make the Guinness Book and  live to be 140 so I can make sure she is ok, Katie will be 99 at that point.  Maybe I'll start adding in more exercise.  Prancercising - I could do that!  Lol!  

No word yet

No news on the DNA study yet.  I called a day before Christmas and they said it would be sometime after Christmas (really?!).  So if that is January, March, or 2017 - I have no clue.  We were just about the very first ones to have blood drawn on Dec.1st a year ago, and will be about the last to get our results.  Kind of like me at the grocery store - if you see me in line, Go! Fast! to another checker - because I ALWAYS am stuck behind the old lady who has to dig through her purse for 10 minutes and then write a check, or the much too talkative cashier who rants on and on to the person in front of me... Murphy's Law really takes me literally.

 Not much else going on.  Just a cute pic of Katie (during the Polar Vortex!) when she took a break from chasing her friend around the park (previous post).

Chasing Camille

We went to the park yesterday and ran into a friend Katie has known for 5 years, Camille. Katie chased Camille around for about 45 minutes.  It was just pure happiness - she had so much fun!     
At the park

Prepping for Black Friday!

Halloween

Our little cowgirl had a great Halloween.  I took this picture in the morning and then had to take off her dress and bandana to send in to school.  She kept pointing at it wanting to put it back on.  A friend asked me how I got her to pose - ha ha!  That is SO funny!  I take about 50 shots hoping for one good one, once in a while I get one although I am sure this is not the best shot with all of the stuff in the background, and my lens must have been dusty. But Katie looks good and is a happy cowgirl so I am good with that.

Katie is doing great although she recently went through  a month or so of being defiant. I was thinking maybe it was just the terrible twos since we never did go through that.  Every single day we would get notes sent home from school about Katie not wanting to get out of her chair (stiffening her legs) to find her name on the board, or throwing puzzle pieces around, etc... Having no other kids, my best guess was that she realized that she can  say no...  oh no!

I noticed it at home too: not wanting to eat eggs and other healthy things anymore, throwing toys around, and having a bit of a temper tantrum occasionally which she really didn't have before.  Well, it seems to have gone away and she is back to herself, although she will only eat eggs when Dad eats them with her.  I hate eggs, so that works for me!

 I have put her on Juice Plus+ since she will not just open her mouth like a little bird for me anymore and refuses vegetables. It is a gummy that is made from the actual juice of fruits and vegetables, and they say that usually kids will start to crave more vegetables because their body is used to (now) having it - okay so don't quote me on this, but that is the general idea. It seems to be working as she will eat up these gummies like nobody's business, and also drink these smoothies I make with carrots and tomatos thrown in. It also helps to put on Teen Beach Movie as a distraction!

 Juice Plus +

So all is well and we are still waiting for Katie's DNA results.  I try not to get too hopeful and would hate to have to write about not so great results - but I hope we find out something.  Any good thoughts sent our way are appreciated!  Very much!  I will let you know as soon as we know, hopefully by Christmas. 

Katie's Contraptions

  Katie has had so many different contraptions to help her with walking and balance. Here they are through the years:


Katie started wearing leg braces early on, by two-years-old.  She was probably about three or four-years-old here with a brace on her feet to keep them in the right position, and all the way up to her knees.  She has now graduated to using only a foot brace, and she is doing so well walking that she will switch to only a heel insert next week.

Katie had this Swash (standing, walking, and sitting, hip orthosis)  in preschool for only that school year.  It was left at school and they would put it on her for three hours a day.  It was to help keep her legs and hips in the right position while sitting and walking and prevented her from scissoring (crossing) her legs (when walking). 

We have seen several different walkers in our house throughout Katie's lifetime, this was the first one. It held her in and up since she didn't have much strength in her legs to hold herself up.  We usually had to bribe her with cake or some kind of dessert to get her to move in it.  Even though she is smiling, she really was not a big fan of this walker. 

Katie has done horse therapy for five years now, this is an earlier picture when she still was in glasses, and so little!  Hippotherapy has helped Katie to gain core strength and works muscles that are not usually concentrated on.  I think that this  has helped her a lot with sitting balance, as well as her balance in general.

This lovely outfit is a SPIO (stabilizing pressure input orthosis) . It is a compression garment and expensive ($300.00) and helps kids to know where their body is in space because it is tight to the body.  It is also supposed to be good for kids with autism.  Katie wore this under her clothes for about a year or so, and here in Phoenix in the summer that is no fun!  She mainly wore it in the winter.

Here is Katie today, this morning actually - carrying her backpack around the house, she loves her backpack!  She is walking pretty well and I must say does not like to sit still, which can be hard on a Mommy over 40 (way over)!

All of the above have helped her to get to this point, and although her balance is not yet without worry and requires "catching" more often than I'd like - she is doing better and better every day.

Signing

Katie has learned a few signs.  It has been a long road since her motor skills are not the best, and she has her own variations of what works for her.  She just learned "food" the other day and has been using it quite a bit.  It took about a month for her to learn "me" (about 6 months ago) and she picked up "food (or eat)" in a day!  Priorities, you know...

signing

Odd things

Here I am at Starbucks.  I don't even like Starbucks that much but I found a gift card.  I'd rather have a coffee from Circle K but they probably don't have wifi and seating.  Katie is right now in her summer program (Conductive Education) most likely walking down a long hallway between obstacles, up and down stairs, picking up rings off the floor, kicking balls - I am sure she is having a blast. I'm lucky that she thinks therapy is more fun than Disneyland.

So, thought this was a good time to take a few minutes and write. I have however, forgotten my reading glasses - so if you find mispellllinz, that is why.  :)

Katie has proprioception issues which is, "the ability to sense the position and location and orientation and movement of the body and it's parts."  This is not news to me, but some odd things about her that I think could be related to this are:

 1)  When her hair gets in her face she never brushes it away.  And my husband wonders why I don't grow out her bangs!  She will be sporting bangs for a while, hubby. Or this one:

2) If she happens to sit on a toy she doesn't seem to feel discomfort.

3)  Not once has she tried to scratch an itch, ever. She feels pain and tickling, but when it comes to these other things - nothing.  How can you not have an itch?

Recently (before it was 119 degrees) we were in our backyard and Katie was playing with the small rocks in our planter.  I looked away for not more than 5 seconds and when I looked back she had ants all over her hand. She was fine until I started yelling and slapping them off of her. They left little welts that hurt me more than her.

On the other hand, no pun intended, she is so empathetic when others get hurt.  About two months ago I sliced my fingertip off with a new slicer I bought - damn slicer - I should have read the directions. Katie cried for an hour even though I was containing my freaked-outness pretty well.  I kept reassuring her I was fine as I tried to control the bleeding. Man, fingers really bleed!

It's good to have an empathetic child but if there is someone crying or hurt on TV or in a book, or if you say "ouch!" she gets all teary-eyed.  What a nice kid I have!  Too bad she can't feel her own itch or brush her hair out of her eyes.  For now we just make sure we have a lot of rubber bands in the house.