Tongue, again!

What's the deal with this tongue hanging out again.  I think it's almost over as this morning she had no sign of it. But for about the last two weeks Katie has had her tongue out all the time and this has happened before, about every 9 months to a year it seems to happen.

When we were at horse therapy last week one of the therapists said it could be due to a growth spurt.   She explained why and it made sense at the time, but I have no idea how to put it in writing as I cannot remember all the specifics.

Makes me nervous as she's constantly trying to walk around and I'm afraid she'll fall and bite her tongue!

Today I had to leave her for a moment to let Paul in the front door and as we walked back into the living room, there she was walking to us from the family room, about 30 steps.  Exciting and scary all at the same time! 

Fundraiser

Our Casino Night / Silent Auction fundraiser was put together by a few of us parents who enjoy having the Conductive Education summer camp here in Phoenix for our kids, rather than spending all summer away from home in Tucson. I spent about two months of my life working on putting this together, and I must say it turned out better than I thought!

We charged $50 a person and had about 130 people show up. Thank God the weather was good, that was a big concern because I didn't know how that many people would all fit inside my house if it was pouring rain. Whew!  My sister came from Colorado and I put her to work typing up all the info on the silent auction items, thank you Mindy!  Next time I am sure she will just fly in a few hours before on the day of the event - I would!

We had gaming tables: 5 blackjack, 1 craps, and 1 roulette table.  It was so much fun!   The dealers were terrific and would teach you how to play if you wanted.  We had catered appetizers that are still getting rave reviews.  We had an open bar with two bartenders and went through a lot of vodka and wine. We had 12 dozen donated alcohol infused cupcakes - delicious! (After Hours Cupcake Bar).

We profited over $8,000 which all goes toward the summer camp.  I am hoping this year the summer camp will help Katie tremendously with walking and becoming more balanced.  She will also work on other things like sit to stand, feeding herself with utensils, drinking from a cup, and other fine motor skills to help her with daily living.



Here is a recent video of Katie, I took her to the park and let her go:  Walking in the park

Hello?

Oh hello blog! Do you remember me?

Sorry blog, I have been crazy busy for two months with putting together a fundraiser that happened at our house on March 31st.  It was a big success (so far raised over $7000! ) and so much fun!  We had casino night and silent auction items, food catered, and lots of vodka drinkers who seemed to be having a great time throwing dice and winning fake money at blackjack.

I will post more details about this event next week when I get the final count on the money that was raised. All of the money will benefit our summer camp program.  I think the event went off without a hitch, except next time I will not be drying my hair when the early birds arrive!

 More details to come!

And Katie is doing great, still preferring to walk around rather than sit and do ANYTHING, (I'm exhausted!) and her balance is getting better and better.   

Bungee

Swan Rehab got these new bungee cords that help Katie with learning how to jump, help with her balance, and I am sure other things that I cannot remember they told me. She loves being in these bungees, and seems to like to jump, which she does not do otherwise.  Here is the video: Bungee

Katie seems to have "all of the sudden" gained much better balance in the last few weeks.  It's such a milestone for her (and me!) and is really a good feeling to actually see that all of these therapies (and there are many!) have now amounted to this.  She still needs to be watched closely while walking around because she will still fall backwards which can be frightening, but I am just simply amazed at how well she is doing.  It is really exciting, and a sense of relief that she may be walking well soon. By soon I mean, oh, hopefully within the year. :)

Check this out!

All of the sudden, Katie just took off and walked around our yard for awhile!  Here she is at about 25 steps, this is so incredible - it's as if something just clicked!  We are so proud of how far she has come.

Walking!

So true!

The holidays were crazy busy!  However, a good crazy... With Katie at home for two weeks I had no time to get on here, and now I only have a few minutes but will post something else soon.  I found this and had to share: 


 “I thought I would have to teach my daughter about the world,  it turns out I have to teach the world about my daughter. They see a girl who can not talk, I see a miracle who doesn't need words.”

- Unknown

ER




Katie feeling much better on Thanksgiving!

 Oh my gosh where did November go?  I am sorry blog, that I have totally neglected you. 

We had a bit of a rough go of it when the school called me and said I should pick Katie up because she was being too quiet (not her usual "screaming with delight" kind of girl) and the fact that she kept arching her back, constantly.  So I picked her up and took her right to the pediatrician.  He wasn't really sure what was going on, thought it might be constipation but checked her out and it didn't seem like that was it. He said to take her to Phoenix Children's Emergency Room if she got worse or not any better by morning. I also noticed that along with arching her back (whether standing, or in the high chair) she also seemed to have restless legs.  Having worked at Mayo Clinic for 10 years, I was worried because I remembered that restless leg syndrome was a neurological issue, which is scary since Katie has those issues anyway.

So in the morning she was still doing these things, although never acting as if she was in any pain, and not babbling or making any sounds.  I started crying, thinking she must need an MRI to see what is going on in her head that is making her arch her back and move her feet so much. I was so worried.  I had to have Paul call Katie in sick to school because I was so upset.

We got to the ER, which was a WONDERFUL place, and they took care of her right away.  I was surprised when they wanted to do an x-ray of her stomach, but I thought I'd wait to ask about doing a head MRI.   Crazy enough, her x-ray showed extreme constipation - they showed  us the x-ray and it seemed to me that it went from her neck all the way down, well, however high the colon goes anyway.  So they did an enema ( I won't go into those details) and then Katie was on a lot of Miralax for several days (she takes it anyway, but we have since upped the dose to 1 capful a day) and one crushed up Dulcolax (supposed to push it all out once the Miralax has softened it), which worked great!  I have never changed so many sheets in my life!

Katie has always had constipation issues, it seems to go hand in hand with low tone. Since this whole episode, Katie has been doing great, and if she gets irregular I just give her an extra capful of Miralax later in the day and then WATCHOUT!