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!

the little things

For us, the little things are huge. Just now Paul and I were trying to keep Katie entertained from a short distance (we were in the kitchen and Katie was in the adjoining family room) while I made her an egg and Paul was fixing her highchair.  So to keep her busy, Paul said, "Katie, where is your head?"  and we both put our hands on our heads and she put her hands on her stomach.  I said, "that's your tummy, where's your head?"  And she put both hands on her head.  We continued on with nose, and then tummy, and head again, and she did them all.  She has never been able to find her own body parts until today (only other people's).  It's not 100% consistent (I just asked her where her head was and she clapped!) but what a good start!

extensive therapy

We recently had a family reunion in Estes Park, Co at the YMCA which I highly recommend - if you like your family that is!  It was an awesome place with lots to do and we all stayed in an eight bedroom cabin which was very roomy.  My cousin Michelle is an internal medicine doctor (who should be sending me and my husband a bill for all the moles she checked and questions about his recent vertigo etc...) and I asked her about my arms which have been bothering me lately.  My upper left shoulder and right wrist have really been painful and I've never had anything kind of pain like this before.  I've been pretty worried about it and was sure for the last month or so that I must have some terrible neurological disease.  What a relief when she said, "It's because you hold Katie so much.  It's tendonitis and will go away when you stop having to carry her everywhere."  Ahhhhhhh.... I will be around to see her walk someday!

And speaking of walking, Katie is in a summer program where she gets three hours a day of "Conductive Education".  Most of the kids in the program are more severely affected and cannot sit up or communicate, and are either really rigid or floppy.  Katie is one of the three in class who can actually stand, with help.  The first day I actually felt guilty because she can stand up.  Isn't that silly?!

I am hoping this summer will get her on the road to walking.  For one, so my debilitating neurological disease will go away - and of  course I just plain want her walking!  The program consists of a lot of flexing and stretching and rotating wrists and ankles etc... I am there acting as her aide and have a hard time keeping her laying down during the stretching as she prefers to sit up.  I know this program has helped the other kids, many of who are in it year-round.  One (who had brain trauma) could not hold his head up last year and he is doing that and more now.  They take Katie and a few of the others who have more abilities and do other things with them (walking with walkers and through parallel bars etc...) so I am hoping to report back in a month that she is running relays!  Just thinking positive...

Ohhhh!

Back in January I posted "Lips!" where Katie kept pursing her lips tightly for several days... Well, for the last two days she keeps doing an "O" with her lips!  What is this all about?  No idea, but I would guess maybe she is gaining muscle tone in her face?  I sure hope so, because the drool is back (off and on but ON a lot!) and four years of drool is... well, no carnival ride.   

Please!

I've been working on getting Katie to say "please" sign language style for a while, and she finally did it!  Last night with some prompting, she did this sign several times to get her milk!   Previously she had never been able to grasp "signing".  Here's to sentences in our future!  Cheers!

Standing Barefoot

Yesterday I was sitting on the carpet next to Katie, who was standing and leaning against the couch, when all of the sudden Katie no longer needed the couch and was standing there (barefoot) on the carpet - all by herself.  At the time I was on the phone with my sister, and we figured it was about 30 seconds that Katie had been standing.  Normally I have her stand in her leg braces because I can easily put her feet in the right position and it's much more stable for her than her bare feet.  So to have her standing there, balancing herself while barefoot and with no help at all from me, GOOD NEWS!