A few updates



 Katie's tongue is not sticking out anymore.  Her continous "tongue sticking out" phase lasted about two or three weeks, then went away. Then came back when she knocked out her two front teeth (for a few days) and now is gone, I think for good. Whew!



Katie the pirate! Note her tongue was sticking out - this was right after she knocked out her two front teeth.



Katie was in a wedding this past weekend! See if you can spot her in this video!

Katie is walking better - in this video she has on her braces and the SPIO (pants) underneath her regular pants - they give her extra support and help her balance. 







SPIO

I ordered a "SPIO" (Stabilizing Pressure Input Orthosis) for Katie.  This is an undergarment that is similar to SPANX (for women, to hold in our cellulite!), or a girdle - if you can't visualize a SPANX.  Katie's is a spandex type of material, and for her I got the pants only - which is worn under her regular pants.  It is intentionally tight on her so that she receives input, and it should help her to know where her body is in space.

So I put it on her today for the first time, sent her to school, and I get a note home from her teacher that she took 5 or 6 steps today, that's a lot for this girl! This SPIO just may be worth the $100 that it cost!  We'll see how it goes tomorrow at treadmil therapy - that should be a good test.

*The SPIO seems to be helping her - She walked to me at treadmill therapy and it was the most balanced I have ever seen her - about 6 steps!  Then, I went to the school for a conference, and Katie's teacher showed me how far she had walked the day before, and I would guess it would have to be at least 10 steps!  Her teacher said she pushed her walker aside, and walked over to where all the other kids were calling for her. (This SPIO is also really good for kids with autism - and a 90 day refund policy!)  I think I made a good investment!

Katie on the local news!

Check out Katie on the news last night! I find the "cookie eating scene" funny because she was a bit fussy and I kept giving her food to keep her from yelling - didn't realize she'd have a close up with a mouthful of cookies / crumbs!  That's my girl!

ABC 15 News

Comparison in walking

Here are two videos showing the difference in Katie's walking ability from the first of August to mid-October. In the first video, (her first time on the treadmill) she needed help with foot placement. In the second video she is doing pretty darn good all by herself!

I had to video tape the second time from behind her so that she wouldn't get distracted! It's amazing to me how fast she is progressing, for Katie.  I know that all of her therapies: Horse, OT, Speech and PT (treadmill) have helped her so much, along with the conductive education program she attended this summer.  But honestly, from age 1 to 4 was slow progression for this child, and the last nine months we have seen incredible strides - since her transfusion. 

Here is the link for SWAN Rehab where Katie does the treadmill therapy, in Phoenix. It is one of the best places in the country for stroke rehabilitation.  http://www.swanrehab.com/


Here are some other links of the wonderful places locally (Phoenix mainly, and Tucson) that have helped Katie, a lot!  Maybe they can help someone else!

 http://www.swgaitway.org/ Conductive Education, Tucson
http://orthoticspecialists.com/ Orthotic Specialists (Leg Braces etc..)
http://www.headtotoetherapy.com/ OT, PT, Speech
http://www.bouldermountaintherapy.com/ Horse Therapy (plus they offer all other therapies)

http://www.fiestapeds.com/ PT, OT, Speech - we used to go here and they are great too!




At School

This is a note I received today from Katie's speech therapist at school:

Katie had a really good day today. We were playing with the babies, and when I asked her to put a blanket on the baby, she chose between a bottle and the blanket, and then she covered up the baby and did the same for following directions for bottle. She also gave me a baby when asked. I later asked her which center she wanted to go to next and she looked towards the library then with assistance, she quickly made her way directly there using only my fingertips for assistance. She was able to push herself nearly straight up from a seated position in the vinyl padded furniture as well.

Not the same girl as last year.

Susie

I'm not surprised my lil' bookworm went straight for the library center! (Amy)

Oh no! (teeth)

When we decided to put new floors in, we decided on wood rather than tile or stone because they are more "forgiving".  Our last house had tile throughout and I felt like I always needed to have slippers on, otherwise my feet hurt. Well, these wood floors weren't forgiving enough to Katie's two front teeth - she fell face first right on them the other night and they took her two teeth right out.  My poor girl cried for about an hour, but with the help of a lot of hugs, reading books with Daddy, and some Ibuprofen, she ended up having a good night sleep. The next day the dentist said it was as if she had had both teeth extracted, that there was nothing left in the sockets - which was good news.  She also says she sees this about once a week - so that made me feel a little better, and the fact that they were her baby teeth was also good news.  Bad news is that she will not have front teeth until her permanent ones come in which could be 3-4 years.  However, I must say she is just as cute as ever, and she is feeling fine, so it's ok.  And it will certainly help to make her Halloween costume a bit more authentic!    

From one phase to the next

Katie stopped with her tongue hanging out - it lasted about two weeks, but was immediately replaced with her hands in her mouth - constantly!  Ugh! So I am just trying to keep her hands busy and will see how long this phase lasts. Always something!

Katie continues to improve a lot on walking more steadily, and the two sets of company we have had recently are amazed at her growth in the last few months (both with walking and physically, how tall she has grown).  I will try to get some video of her at her next treadmill therapy because it really is something that needs to be seen - the difference from a few months ago.

One new thing Katie is doing is she will grab my finger, pull herself up, and pull me toward whatever it is she wants.  She has done this a handful of times and the other day, Katie pulled her Grammie over to the doughnuts (which I should not be buying!) and was loving the doughnut!  A definite sweet tooth.   

Tongue

Katie's tongue has been hanging out like this for about 10 days and it's driving me nuts!!  I took her to see the pediatrician and I've asked all of her therapists about it and even the orthotist. I was told that kids do this when they have a sore throat but I am pretty sure this is not the case.  The other idea is that because she is working so hard on walking right now, that other things might regress.  And because the tongue is a big muscle, maybe she can't focus on keeping it in while also working on walking.  Geez, I hope this is the case!

This happened once before over the summer for less than a week and then it just went away.  I had forgotten all about it, until now!

If I had a margarita in hand I'd be toasting to the hope of this tongue phase being done with, soon!  

Cheers!

Getting taller!

Katie has always been a small fry for her age.  Her weight recently made it on the charts however, her head size and height are still lingering somewhere else. Katie's gastroenterologist has had me add Carnation Instant Breakfast Drink to all of her milk for the past few years which has worked very well to put weight on her.  I see now how adding weight when you're a  kid (if you're underweight) causes you to grow.

Katie's (too short) braces she has outgrown

I took Katie to see her orthotist (who is in charge of her leg braces) in June.  At that time he said they fit her well and that she probably would not need new ones until October or later.  Well, all of a sudden last week she was outgrowing them!  I noticed her toes were at the edge of the AFO (ankle foot orthosis) which is a molded boot that goes inside the brace. I took her in right away and Brett (the orthotist) seemed amazed at how quickly they didn't fit her anymore.  He pointed out how the braces are really short on her because they come way down below her knee - where three months ago, that was not the case. He also said that when kids start walking, generally they really start growing, fast.  Whoa - I guess!!!

  With Katie spending the summer in Tucson at Conductive Education - walking so much, and now the treadmill therapy and walking with us at home, she is just sprouting up really fast!  We always thought we'd have a tall girl since Paul is no shorty at 6'2" and I am 5'6".  Keep growing Katie!  I'd love to have you in size 4 pants by the time you are 5!

When we get her new braces in a few weeks I'll post a picture here next to this one to show how high up the braces really should be, and how much she has grown out of these ones.

Fingerpainting

Katie has a few sensory issues like combing her hair, putting on her glasses (I have to sneak up from behind so she doesn't see them coming) and sometimes getting a bit messy.  A note was sent home from school last year saying that she was not having a good time while they were trying to get a footprint for an art project, and she was doing some head butting and screaming.  They suggested I do more of that type of thing with her.  So, here she is having a good time with some finger paints. She really enjoyed it (although I didn't put her foot in it! ) and I was happy she transitioned well from painting to bathing.