Easter

Katie had a fun Easter chasing her cousins around and seeing Grandpa and Grandma.  She enjoyed finding the eggs in the yard and noticed her Easter basket as soon as she woke up and came into the family room.  If there is candy around, she will find it!  I don't let her have much candy - I am sure Paul and I will enjoy most of her Easter basket, which we don't need either!  The dentist is amazed at how good her teeth are and said that he could tell that she doesn't eat a lot of sweets.  Oh, she gets her share!  One time at a birthday party  we were running late, so I just took her without lunch ( expecting pizza or some kind of food) and there were only sweets, and lots of them! She had WAY too many. I paid the price for it with a very cranky child.  So I try to avoid that, cranky Katie is not much fun. But here she is, sweet as ever.     

Cute pic

This captures Katie's personality!

DNA

We got news that the doctors are pretty sure they found a mutated gene that could be part of Katie's issues.  However, they are not 100% sure.  T-Gen is going to double-check and get back to us asap, which means in a few months. We hope this is the case because there is a chance they may be able to help Katie.  Not wanting to get all excited and then be disappointed, but we are hopeful!  Will reveal all the details when we know them. Fingers-crossed!

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.