Friday, January 29, 2010


Just got an email that Katie (while sitting in circle time today at school) repeatedly stomped her feet when asked - three times in a row, this is just crazy!  Really?  My girl stomping on command three times in a row?  We will be practicing this at home now, and I almost feel bad because I didn't know she could even do this.  But instead of feeling bad, we will be excited and work on it with her and pretty soon she'll be stomping around this house like nobody's business!  Go Katie, stomp away!

I am also seeing better focus with Katie, more of her keeping her eye on an object rather than her usual handing me a book or toy and looking at me, not the object.  Three therapists have noted this too, two at home and one at school - so she's definitely coming along with this!  I am basically holding back on telling about more improvements that I see until I see them more consistently, to make sure I am not unintentionally making something up.

So, the controversy is, would this all have happened naturally anyway or is this due to the transfusion, which we will never really know - but I know!


Thursday, January 28, 2010

Speech Therapist Observations

Katie attends a preschool class for kids with delays and disabilities at a local public school, and she just loves it.  Her teacher and therapists at school know about the procedure she had, and they know I'd really appreciate it if they let me know of any changes they see in her.  After two days back at school, her speech therapist emailed this to me, "She is holding her head up straight, seems to concentrate more on what group is doing, has made many vocalizations, and when she waves, she shows intent!"  I have also seen progress in these areas and  must say she does have better posture, but this wasn't something I noticed until two different therapists mentioned it to me.  She is definitely vocalizing more, although the other day when her OT therapist was here, Katie babbled A LOT more when I left the room.  What's up with that?  Maybe moms in general tend to get the shaft, because I distinctly remember my sister telling me the story about her daughter throwing an absolute fit every time she changed her diaper.  But then one day when daddy was going to change her diaper - little Sophie brought the diaper over, laid it flat on the floor, and then laid on top of it - probably with a smile on her face.  It's just not fair.

Monday, January 25, 2010

Biting and Pinching

For about a week after the transfusion Katie did not bite or pinch once - which was very unusual and wonderful! I was hoping this phase might be over.  But she also had the flu that week and I wondered if the no biting and pinching was due to lack of energy.  Well, turns out it must have been the lack of energy because she had a biting frenzy a few nights ago with poor dad, and pinched me so hard I now have a lovely scab on my neck.  However, I must say she bites and pinches with gusto and a big smile on her face!  I'm hoping that just means that she really puts her all into everything she does, and will someday be a big time lawyer or the next Katie Couric - I'm just trying to look on the bright side here.  We do tell her "no!"  but I don't think she understands that she hurts us, literally.  I know most kids do this stuff anyway but it's been going on at least a year, although she is doing it less often - good sign!

Friday, January 22, 2010

Eggs Anyone?

I just had to add this video even though many of you have probably seen it already. Before the transfusion I  was trying to document what Katie could and couldn't do - and thought I'd get her on video trying to get eggs on a fork and to her mouth - which obviously isn't one of her strengths!  But I love this video and wanted to post for anyone who hasn't seen it.

Thursday, January 21, 2010


Katie has had the flu/cold for about a week and although we have seen some small changes - I am going to wait to comment about those until she is feeling better.  I want to make sure these changes are not just due to lack of energy.  However, one change I am going to talk about is her lips! Having low muscle tone affects Katie's face (muscles) so her mouth has always hung open a bit and she tends to drool.  One of her doctors (probably the neurologist) told us that when her tone gets better we will see it in her face, I think he meant it might not be so round and filled out - that maybe she will get some cheekbones!  So yesterday, one of Katie's caregivers was here and said to me, "Her face looks different, her lips are tighter!"  I had noticed this too, but wanted to see if she would notice it without me saying anything to her. So I've included a few pictures:  on the top, her "before" (actually taken right before the transfusion) and then one I took today where you can see her pursing her lips.  This is new, she has never tightened her lips like this before, and she keeps doing it. 

Wednesday, January 20, 2010

Home from Duke!

We got home from N.C. a week ago today and I must quote Dorothy, "There's no place like home!"  Trying to get Katie to nap and sleep in a pak n' play was rough enough, but the most stressful part of the whole trip was the 4-hour flight there.  I was just thankful that when I looked back after her many screams, the three men sitting directly behind us all had on headphones and their eyes closed!  Thank you GOD!

Katie's stem cell transfusion went extremely well. It was an outpatient procedure and took about three hours in total from putting in the IV to taking it out. Duke Medical Center is extraordinary - wonderful nurses and staff, and our doctor was exceptional.  And who could forget Tray, the music therapist.  What a wonderful addition to have him and his guitar singing The Wheels on the Bus and many other songs to Katie while she was having the IV put in.  She absolutely loved the music and singing, and even strummed his guitar a few times.  Maybe a future Carly Simon in our midst?

My husband said to me the next day, "Could the stem cell transfusion have made her more loveable?"  That day she was constantly grabbing our arms and hugging us, and although a very affectionate little girl anyway - this was a bit more than usual.     Could it be?