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.

Amazing Progress!

Katie has no fear and keeps walking from the couch to me - usually 5 or 10 good steps (and sometimes not so good steps, but steps nonetheless!).  It is incredible to see her confidence building and she is always reaching for our hands to take her for a walk around the house.  Last night it was nice enough outside that we were able to walk her -each of us holding a hand- down to the end of the block, which is about 3 houses worth of walking.  She did terrific! I can't beieve this is happening right before my eyes! 

We are definitely headed in the right direction - take a look at this video!

10 steps plus a bit of dancing!

push

Katie's new favorite thing is when Paul and I lay on the floor on our stomachs and she crawls all over us.  She thinks its the greatest thing.  I use this "technique" when she is crying because using us as a jungle gym always makes her happy and laugh.  So lately Katie has started to push us when we are on the floor.  She will push on us anywhere - arms, legs, back... and of course we roll over appropriately, so it is a big game to her. I wonder if "pushing" is listed as a milestone?  It's all fine and dandy until at the gym the other day, I looked through the window into the playroom and saw her pushing on a sitting kid's back.  His twin came over and took her hand off of him and scolded her.... ahhhh, 4 year olds!  

Six months of Progress

Katie is doing very well at a lot of things and today especially treadmill therapy.  The first day she was on for six minutes two separate times.  In between she walks in her walker (with supervision) and does other physical therapy types of things.  Today she did a total of 15 minutes and her therapist seemed really impressed that she can stay on that long - she sure is improving in so many ways! 

All in all, I think that the stem cell transfusion six months ago really played a part in having helped her to do a lot better at the things she was not so good at (leg strength, muscle control (arms), posture, pointing, focus)  and speed up her progress in general.  Although we have done a lot with her with all of her therapies (physical, occupational, speech, treadmill, horse) and conductive education, and she is at school 3 hours a day -  I really think that without the stem cell transfusion, she wouldn't be as far along as she is. She is babbling a lot lately, wants to constantly be upright and walking, pointing at pictures and our noses, heads, ears, etc...  even the teacher at school sent home a note saying that Katie has sure changed a lot.  I think this is going to be one of the most progressive years for her.  I hope by her 5th birthday in March that I can report that she is walking and maybe even talking!         

Cord Blood News

A good article someone sent me:
Cord Blood Info

Tucson "Conductive Education" at Gaitway

** Apparently, I have mis-used the term "Conductive Education" by relating it to therapy, and have unintentionally ruffled some feathers in the Conductive Education World as I found bits of my blog on their website with some comments. The last thing I want to do is have wrong information out there, so I have changed the following post a bit in order not to term CE as "therapy". If you want to know what the definition of CE is please click here: CE Definition 

We were just in Tucson at a terrific place called "Gaitway" which does Conductive Education.  CE is mostly aimed to help kids with cerebral palsy and although Katie does not have CP, she qualified because of her many physical delays at age 4.  We were there for 6 weeks and Katie went for 3 hours a day.  It seems to have helped her a lot! She is walking better (with assistance!) and her feet/toes are staying flatter than they had been (she tended to curl her toes because it made her feel more stable) so the toes being less clenched is a very good thing.

At this summer program Katie got a lot of stretching and flexing mixed in with tons of walking in her walker, walking in between parallel bars, and up and down stairs and a ramp among other things. The conductors sing while doing the conductive education which seems to calm the kids and make them happy. Click on the link below to see a video that shows a bit of what they do.

Gaitway


While in Tucson we stayed at the Ronald McDonald House which was awesome!  For not being at home, it was the next best thing. The staff there was absolutely wonderful and went out of their way for us and the other families. Katie ended up coming home with toys, books, and a few quilts- all which are donated to the house. Meals were brought in nightly by groups ranging from local businesses to churches to families to The Olive Garden, yum!  No cooking for 6 weeks was a huge bonus for me!  But I am sure I must have gained 10 pounds from all the cookies and brownies that I wasn't able to just "pass by" very often.  The house is basically set up like a hotel where we had our own room and bath, with a tv, and small refrigerator.  Laundry was free to do and there were computers, a play room, a tv area and a huge community kitchen stocked with food for anyone to use.  I can't say enough good things about this place!  We also met a lot of really nice people staying there too. It was really bittersweet leaving, but then not so much when I got a speeding ticket trying to get out of town. 

Since we've been back we started Katie with treadmill therapy.  I learned about it from one of the Moms at  Gaitway in Tucson (thanks Susie!).  Warren, Katie's therapist with the treadmill, said that Katie walked 12 minutes total (6 minutes two separate times within an hour) her first time, and said that was REALLY good!!  So she will get this therapy 2 times a week along with her other therapies.  I think we are on our way to walking!    Here is Katie's first day on the treadmill:

dancing!

Katie and I have been away for six weeks at a physical therapy camp, which I think really did her some good!  I will post all about it and our stay at the Ronald McDonald House sometime this week.  For now, I need to get some chores done... :(  Here is a cute video!