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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!

     

Goodbye October!

I am so glad October is over!  Will post some new info next week, but for now these pics of my Lil' Eskimo will have to do.

Tonsils




Recovered!

  Katie's tonsils and adenoids are gone because they were really big.  She also had a turbinate reduction that should help her breathe through her nose rather than her mouth.  (see this link): turbinate reduction info

Katie had to stay home for what ended up to be the longest week of my life!  She had the surgery on a Friday, and by the next Friday I thought I might need to be admitted.  I know most kids probably do pretty well, but Katie had a really hard time with the pain, and I had a really hard time not being able to know exactly how she was feeling and what she needed.  I had to keep her on her pain medication (every four hours!) or she would be crying.  And the medication tasted terrible!  Poor kid, I felt so bad having to pin her down to get the medication in. But those meds helped SO MUCH!

So for a week she wasn't eating anything, which is expected, but at least she started drinking on day two, right as we were getting ready to go back to the hospital to get an IV hooked up for fluids for her. Whew, that was a relief!

It has been a few weeks now, and Katie is back to eating every bit of watermelon she can get! She started feeling better about day seven, and since then she has been eating like crazy. And her smile is back!

I am glad she had the surgery, I think it will help her a lot with breathing and maybe some other things. But I am so glad that hard week is over, and that my happy girl is back. 

SPIO

Here are some pictures of Katie in her Spiderman type "able-to-scale-small-buildings" outfit.  Actually it's called a SPIO. We have had the pants for almost a year, and just got the vest this summer.  But since August in AZ was the "hottest August ever!" We did not put the vest on her until it cooled down to at least 105.  That sounds so ridiculous! 

Katie has worn both pants and vest to school everyday for the last three weeks, under her clothing.  The pants help her with knowing where her legs are in space - and I can see that with the steps she takes.  With it on, her steps are much more normal and  not so high.  The vest helps her with being more calm and I noticed it helps a lot with her arm movements, they are not so erratic.  When she feeds herself watermelon (her best motivator!) she can get it on the fork (actually "pushing" the fork into the watermelon) and get it to her mouth in a much smoother motion than without the vest on.

These SPIO's are not cheap, but seem to be helping Katie a lot.  This is from the Spio website: SPIO is a compression system designed to help children with special needs including cerebral palsy, autism, Down Syndrome, sensory processing disorders, and other neuro-muscular delays. SPIO is made of a patented Lycra fabric with a unique multi-directional stretch. SPIO offers a variety of comfortable and affordable styles that can be worn under clothing all day.

So glad winter is just around the corner!

Signing!

Katie can do the sign for "more"!  We have been working with her for a while, and although it is not exact, it works for her.  She has been very consistent in the last week with this sign. Especially when it comes to watermelon...  I think she would eat a whole one in one sitting if I let her.

Katie can't quite get her hands in this position, but instead does it as a clap with open hands.  This is quite exciting for us, I hope to have  more signs soon!

And since she has started Kindergarten, she has been babbling up a storm.  It's almost as if something has clicked. I think this is going to be a very good year for little Katie!

a busy summer!



1st day of Kindergarten



It has been such a busy summer, I will have a few posts following this one in the next week. 

We went to Tucson for a few weeks for the Conductive Education program, and I saw many of the same kids from last year.  I was so surprised to see how much they have progressed in a year!  The majority of the kids are more severely affected than Katie, and it was a real eye opener to see that these kids were making a lot of progress with sitting and even walking with help.  These are kids that I thought might never be able to even sit up - and here they are (much taller!) and walking with assistance! Many of them, I noticed, now have a great posture, where last year they were somewhat leaning forward and hunched over.  It was incredible to see how much this program helps these kids.

 Katie is doing well, especially following seven weeks of intensive training: having someone help her focus on walking, drinking from a cup, etc...

She has started Kindergarten and seems to love it. I was worried that she would get tired at school because she was still napping for two hours at noon every day (up until Monday!), but the teacher says she is "very busy" and hasn't needed a nap at school. Adjusting well to a long school day and in bed by 7:15 works for me! (Katie, not me)



 

 

Summer Program / Conductive Education

Katie is in the summer program again for CE, and is doing very well!  She goes for 3 hours a day and they work on a lot of different things, but mainly her walking.  One thing they are focusing on is teaching her to walk a few steps, then stop.  That way she won't be building up her speed and ultimately falling.  Here is Bea, the conductor, working with Katie.  I can already see Katie's wonderful improvement!  Thank you Bea!

Here is a video: Conductive Education

Katie on msnbc.com!

Katie made the national news!  Click here to read: msnbc article

Conductive Education

We have Conductive Education (CE) here in Phoenix for the month of June.  This is such a great program for kids with motor disabilities!  Katie enjoys it, and I think it will help her so much in reaching many of her goals.  Each child has their own aide/caregiver who works one on one with them.  The Conductor also works very closely with each child, and instructs each aide in what to do according to each child's needs and capabilities.  With Katie, they focus mainly on her walking goal, and with 3 hours a day - Whoa!  Is she ever tired by the time we go home!

One recent observation about Katie:

Last week, Katie was sitting and playing with her blocks (at home) which have a round hole through the middle, and a cylindrical block that fits in the hole - and she consistently fit the cylidrical block into the hole.  Her hand / eye coordination is obviously improving, which was a big surprise to me.  I didn't think this type of progress would happen for quite a while.  Whether this is related to CE or not,  I don't know.  But I do know that all of the different therapies (and there are a lot!) we take Katie to are making a difference in her life.  And Conductive Education, although more of a program than a "therapy," makes a HUGE difference in her walking ability, as well as other goals we have set, like feeding, focus, etc...

I am excited to see what else CE brings to Katie.  I think this program helps her in more ways than I know.  For more information, see the following websites:

http://www.swgaitway.org/


http://www.cerebralpalsy.org/news/conductive-education/     

Barbara

Katie doesn't say a whole lot - a few words here and there but nothing consistent except "Mama" (when she's mad, or scared, or we have a babysitter). Katie has a therapist named Barbara, and she has said her name pretty consistently when she sees her, and prompted. The "b's" are easy for her to say. The other night my friend Barbara came over, and Katie would not stop saying her name. So here it is:

After I stopped filming this video, she actually said Barbara with one "r" in it.  "Ba-bra". But of course she waited until the camera was not rolling anymore...