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...

Katie's latest walking video!

I guess I better find out what that toy is!



Easter

Happy Easter a few days late!  Katie enjoyed "helping" color easter eggs and then did a great job finding them in the yard.  She put them all into the basket, which is a goal we have been working on - putting things "in".  (and leaving them in!)

Chiari Malformation

 "Chiari malformations (CMs) are structural defects in the cerebellum, the part of the brain that controls balance. When the indented bony space at the lower rear of the skull is smaller than normal, the cerebellum and brainstem can be pushed downward. The resulting pressure on the cerebellum can block the flow of cerebrospinal fluid (the liquid that surrounds and protects the brain and spinal cord) and can cause a range of symptoms including dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination."

Thank you for that info National Institute of Neurological Disorders and Stroke.     http://www.ninds.nih.gov/disorders/chiari/chiari.htm

Katie does not have this, but for about 3 months, I thought for sure, she did. So many of the symptoms matched up:  (lack of) balance, coordination and speech, hypotonia, developmental delay, and who knows if she has headaches or dizziness since she can't tell me!  The more websites I looked up, the more symptoms I found, I think over 20 total!  The girl who told me initally over the phone that Katie does not have this (reading from a report) must have thought I was nuts when I sounded all disappointed.  She said to me, "This is a good thing that she does not have it!"  I just figured it might solve all of Katie's problems if she could have surgery - maybe she'd come out talking - I have heard this has happened.  But after thinking all about it,  I am glad she doesn't have it, and we are moving along at a really good pace, with her walking progression in- particular!

Pam, someone whom I have never met, was the person who saw Katie's tv debut and got in touch with me.  She suggested I look into this because when she saw Katie walking, she said it was like watching her daughter walk..  Katie had the MRI in January and of course I was stunned when I found out she did not have it.  So I had a second opinion, and a third - and, well, they all say no.  Thank God for people like Pam!  Even though it is not what Katie has, I have something to mark off the list, and that is important to me

I hope this info might help someone else.  It is an easy thing to diagnose in an MRI and then have a neurosurgeon look at it - that's what we did anyway - 3 times!  I am posting this because it is not a well known diagnosis, and the only way to diagnose it is through an MRI (cervical spine, I believe).  There is hope if you have it - usually they can do surgery.  I met a mom like me who takes her son to SWAN Rehab where Katie does her treadmill therapy, she  had the surgery done a year ago (by Dr. Ruth Bristol here in Phoenix) and her symptoms, which came on suddenly - are gone.

 I hope this information helps someone!   http://www.ninds.nih.gov/disorders/chiari/chiari.htm

A bit of walking!

Here is a recent video of Katie walking across her room:

a little bit of walking!

Conductive Education in Phoenix

Five of us local moms have raised just about enough money ($15,000)  to have the Conductive Education summer program in Phoenix!  We are still short $5,000 of the 20k needed - but we think we can raise the rest in order to have the summer camp here!

Click here to find out more about the program that is based in Tucson.  If donating, please specify it is for the Phoenix location/Amy:   http://www.swgaitway.org/default.asp


Thanks to all of you who have supported this cause!

Amy