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

Big Girl Bed

I'm sure many of you can relate to the horror of putting your child in the crib, hearing a ruckus a few minutes later, and then finding her standing (OUTSIDE OF THE CRIB!) at her toy box playing with the cd player. Oh yes, the closet door was wide open, the lamp and side table knocked over...  bring back any memories for anyone?  This was our night recently, and although we knew it would happen someday, it wasn't supposed to happen the night before Paul and I left for Vegas!  Which  just happened to be our first outing together, without Katie in tow, in several years.

Katie is now in the "toddler bed" version of her crib which basically means the front of the crib is taken off.  We were excited that we finally had some baby-proofing to do for our 5-year-old, Woo Hoo!  About time!  (Yes, Katie just had a birthday)  We had to take everything out of her room, duct tape the light switches (because the first night she kept turning them on), put those things on the door handles, put up some high shelves, etc... So here we are a few weeks later and it is going pretty good, this whole "big girl bed" thing.

moving forward

I can't believe it has been almost a month since my last post.  We have all been suffering from this coughing, sinus, sore throat thing that is going around, me for 3 weeks!  UGH!

Katie's newest thing is that she will scoot over to me and grab my hand, pull herself up, and we will walk to wherever it is she wants to go.  Usually to the playroom, or the kitchen is popular when she spots some cookies on the counter.  It's nice that she can have a say on where she wants to be, usually near the sweets!

She also understands at horse therapy - if she pats the horse, it will go.  She loves being on the horse and last week she was hugging it most of the time.

Two small steps for Katie, one giant leap towards her potential!  


Oh, and the tongue thing is over with, for now anyway.

Another tongue episode

 It took me days to find this Campbell's Soup logo!  But look at the resemblance - totally worth the wait!  Except for the uncombed hair and lack of bow - bows just don't happen in this household.
Oh I've tried....

Katie has been doing this with her tongue for four days, and it is pretty consistent. I think it just means that since the tongue is a muscle, (and didn't I read somewhere, "the strongest muscle"?!) and the fact that she has low muscle tone, maybe her tongue is finally strong enough to be able to do this.

If you read my blog on 9/30/10 you'll remember Katie's other tongue phase, where it hung out of her mouth for about three weeks. It drove me crazy.  Well, all I can say is at least this phase is a cute one, and  unlike the last one, I am not worried about walking through the mall with other mothers giving my child a pitiful look - that was horrible.  At that time I just wanted to scream, "No, no! Her tongue doesn't usually hang out of her mouth!  It's just a phase - she really is model material!"

If anyone out there is an expert and knows anything about the whole tongue thing, please let me know.  Because, I am assuming it means her mouth and tongue are getting stronger, and that she will be leading a Toastmasters meeting someday.

Glasses

I took Katie to have her eyes checked because lately she keeps throwing off her glasses - I figured she needed a new prescription.  And the fact that they are pretty scratched, it was time for a new pair anyway. Imagine my surprise when the doctor told me that Katie did not need her glasses anymore!  Her vision has corrected itself, and she is glassses-free!  He said that this happens about 50% of the time in young kids who are far-sighted. So, I don't know if the stem cells had anything to do with this, but for me it is one less hassle, and that is huge!  Now to tackle the hair combing dilemma - I wonder if the crewcut will ever become a new fad for 4 year-old girls?  Isn't Shiloh Jolie Pitt headed that direction?

Christmas

We had a terrific Christmas! This was the first year that Katie would see a present and know that it needed to be opened, tearing at the wrapping paper! It was great to see the cognitive strides in "understanding what a present is" that we have not seen in the past.

Sure is loud around here!

For about the last two weeks, Katie has been REALLY loud! Loud in a good way though, shrieking for the fun of it is my guess. We were at Swan Rehab last week where they see a lot of stroke victims and where Katie gets her treadmill therapy.  They see mostly older people and not too many 4 year-olds, at least not when we are there.  It's one big room that is divided in areas, but I could hear Katie all the way in the lobby - having a good time and letting everyone know - shrieking in delight!  I heard someone say to her, "Let's use your inside voice." 

So, I had a conference with Katie's teachers and therapists about her goals and I asked them if she seems to have been louder at school in the past few weeks, which they confirmed.  One of the therapists said that it means her core is getting stronger, that kids can't get that loud until their core is strong enough.  I think she also said something about her vocal cords maturing and her mouth muscles becoming stronger - maybe that was the school psychologist - but anyway, I guess what it comes down to is - all of this screaming is a really good sign!  Paul and I may be wearing ear plugs soon, but it's all good!