Clara-isms

Throwing toys as far as she possibly can...by walking them as far as she can see before dropping them.

Likes to sing and dance.  Favorite songs include: the ABCs, Baba Yetu, and The Itsy Bitsy Spider.  Her dancing involves alternating between swaying side to side while lifting each foot underneath to rhythmically crouching.  It can include rapid stomping/running in place.

If we say, "See ya later!" as she is walking out of the room or around a corner, she will walk back into our line of site and wave with a big smile.

She is now has her first attachment item(s).  As of my birthday, August 9th, she began greeting us after periods of sleep with her bunny thumbie from Potterybarn that she has always had in her crib.  This past week, her "Tutu" doll from my cousin (also a crib companion) has joined the ranks with Bunny.  She must have both when entering, leaving or getting ready for bed.  They are also both great when she needs consoling.  We will be taking them to the hospital next week so that they are there to comfort her (not that she really needs it) when coming out of anesthesia after having her Hickman removed.

She likes to put her head on the floor and walk around herself.  Just sort of spinning on her head.

She will often play on the floor and then just lie flat on her stomach for a few short seconds to rest.  There is a home video of me doing this at 1 year.  It was always a dream of Alan's that our child would exhibit such cuteness mid-play.

She bit me the other day and after my outburst showed her first realization that she had done something wrong.  She then pulled my shirt back every way she knew how to look at the skin she had biten that I had initially revealed to check for broken skin.  A little bit later, she put her teeth on me again 4 times.  Each time, holding back a bite as I told her not to bite.

She sticks her finger in her mouth when she sees someone sleeping in a book or when reading "and the quite old Lady who is whispering 'hush'" in Goodnight Moon before bed.

She has begun confirming "are you hungry?" or "It's time for night-night." by walking to me and waving bye-bye to Daddy or the room.

Bedtime routine has now moved from the living room into her now completed nursery.  We dress her and do her final meds and heparin flushing of her Hickman on her dresser/changer.  We all read Goodnight Moon together.  She gives me snuggles as we turn out the light.  I say "Go see Daddy" as I hand her to him.  She completely falls back and to her right anticipating the crook of his arm.  Then immediately cranes her head back and to the left anticipating my kiss on her left temple as I say "Mommy loves you sweet girl.  It's time for night-night.  I'll see you in the morning."  Alan says she has even begun moving into the position he usually shifts to just before placing her in bed - before he even gets to the second lullaby.

She loves the bathtub.  Leave the door open and she will bee-line straight to the tubside and declare, "Weay!" for wet/water.  We can't wait til we can actually put her in that bathtub on Tuesday next week.

She loves Wheel of Fortune and will clap before the audience when someone solves a puzzle and will repeat the letters called by yelling "A!" for every letter.  She will also clap when the Jeopardy Daily Double pops up...before the audience claps.  She will also clap just after or as a song is finished playing when we turn on music in the house.

Clara's current "words":

Daddy
Baby
It's ready!
It's a tent!
Hi
Bye
All done
Mmmm (when anticipating food that she wants)
Coffee
Uh-oh
Water
Shhh
Cereal
Banana
Yay

Words for which Clara has representative sounds/signs:

Car/Truck
Butterfly
Elephant
Puppy
Giraffe
Bird
Monkey
Cat
Flower
Squirrel
Bunny
Mouse
Frog
Horse
Tiger/Lion
Fish
Sheep/Lamb/Goat
Mouse

Hickman removal scheduled!

Clara's Hickman will be removed on Tuesday, August 30th. 1 year to the day after her first central line was placed and 1 day less than a year before her first dose of chemo that sent her to the PICU.  (See the blog post from the very beginning.)

In other good news, her skin looks good today despite her taper of MMF yesterday. Hoping that continues. I also got an email from her nurse practitioner to wean her sodium bicarbonate a bit more. We are now only giving 1ml 1x/day. That's a third of her original dose. Hope that means we may be rid of it next week and then will wean something else!

Oh, how I loved today...let me count the ways!

1. I signed the consent form for Clara's Hickman to be surgically removed.  We should hear from General Surgery soon regarding when she is scheduled and are hoping it will be within the next couple of weeks.
2. Her White Blood Cell count continues to be steady.  She is at 4.7.  up from 4.6 last week and in the 2.X range the 3 weeks previous.  Associated with this increase in her labs is her ANC @ 1500 and her lymphocytes which are now in the 2,500 range.  Lymphocytes are the sophisticated stuff that respond to things like immunizations! :-)  We like to see that number so close to the normal range (which I hear begins at 3,000).
3. Her chemistry was all in the normal range and Dr. Kharbanda commented on how great she looked.  Her kidneys have had slightly elevated numbers for a long time.  Nothing they were worried about but were just watching.  Those numbers are now all in the normal range and her low end of normal blood pressure is an example of that.  She is still being supported by high blood pressure meds, but we hope to see those go away soon as well.
4. Her Prograf level was a little bit on the low side but they let us taper her MMF anyway.  She is now getting the lowest amount of MMF ever!  Hopefully, her skin will continue to look good.  We discovered in this past week that the red, raw, itchy, dry skin she was having on her face was actually a result of me putting hydrocortisone on her face.  The stuff I was trying to use to heal her face was actually making it worse!  We switched to Aveeno lotion only, and she looks beautiful!
5. Her weight was up from 7.6kg to 7.7kg!  She had a really skinny point this past week and I added "Duocal" to her oatmeal one morning and to her pasta one afternoon.  It is basically just carbs and fat. But she ate like a champ the next day so I hadn't given her anymore.  Alan and I both noticed the pudge come back in her hands and feet and forearms and cheeks on Sunday, so I was glad the scale confirmed she was doing okay!
6. The ONLY thing that didn't go perfectly today was that her prograf level being on the low side meant they did not decide to change our clinic visit frequency.  If it had been in the target range, we were going to be granted visits only once every TWO WEEKS!  I don't mind once a week so I wasn't too disheartened by this.  All the other progress was so fabulous!
7. On a really fun note: Clara repeated the words "red" and "blue" to me today when I asked her what colors her hospital armbands were.  If two hospital staff hadn't been there to confirm "it was clear as day," I would have thought I had made it up.  She still doesn't say "Mama" but she will say "reyh" and "beu"?  We were not able to get her to do it again this evening for Alan. 
8. Also fun: she is officially walking.  She spent most of the day (after our full morning at the hospital) walking in circles around the couch.  Over and Over and Over and Over again.  Or walking around the living room - switching direction randomly just for the heck of doing it.  It was fabulous to watch her just smile as she would accomplish maneuvering around the room, or stepping on a torn out piece of magazine on purpose and then stepping off of it as she continued on her quest to walk.  She was a bit pissed at us at bedtime because she had been having so much fun going from our room to hers down our miniature "hallway" and opening and closing each door as she would walk in and then out.

Such a happy, big (dare I say, healthy!) girl!

Hickman coming out!

So much great news to share!

Clara's bone marrow from 2 weeks ago has come back, and the results are negative for leukemia!  Of course, this is fabulous news, but it was also news we have come to expect.  Perhaps we take it for granted, but we are truly enjoying looking forward - not living in fear.

With a negative MRD (minimal residual disease) at the 6 month mark after transplant, the doctors can feel assured that Clara will not need further IV therapy (big stuff like chemo).  So then comes the big question from Alan and I: Can we remove the Hickman central IV line?  Answer: YES!  The doctor is filing the paperwork today so that the schedulers can get her an appointment in the OR.  We haven't heard a timeframe for when this will be scheduled but we are hoping for this week or the next.

We shared with you that Clara's white blood cell count had dropped just before my parents' visit in July, but I don't think that I mentioned it happened again.  We've been watching it for a couple of weeks and it is finally back up. She's had a runny nose for a couple of weeks, too.  So, knowing that her white count is back up even though the runny nose continues makes me feel a little bit more comfortable.  Perhaps the runny nose really is just seasonal allergies- poor kiddo.

So, now, the only "struggle" left is that we don't need an NG tube for feedings!  Clara has been eating like a champ for the past 2 weeks and is increasing her solid and fluid intake daily.  We are sooo proud of her.  She was 7.9kg before the NG tube wean, dropped to 7.55kg, was 7.75kg on Tuesday last week and then astonishingly dropped to 7.6kg today (she looks and feels so much bigger!).  So why is this a struggle?  She is going to be getting a significant number of meds through the end of the year (although fewer and fewer as time goes on),so we now have to figure out how to get her to take her meds by mouth.  It has been a benefit of the NG tube and with the number of meds she is taking right now it has been a really good reason to leave the tube in.  But we are really ready to be done with it.  Making the decision to torture her with 22 meds over the course of a day is a difficult one to make.  And I would think that if she had a choice between meds and the tube that she would pick the meds...I think.  We are going to try a myriad of ways to give her her meds and will keep you updated on that front.  Pray she really likes the taste of them!  Some of them smell good, but whether or not she will consistently take those good tasting ones still remains to be seen.

Pictures!

PAH- STAH!  MMMM!  She leans over her tray for this favorite food.  It is just so good!

Peanut Butter Sandwich.  Another favorite.

Uh-oh!  Left a smidge of peanut butter on her fingers...no problem.  We will just lick it off!

Now you see it.

Now you don't.  Not to worry, though.  The entire bowl of the adult spoon is IN HER MOUTH! No peanut butter left uneaten around here!

Clara loves fish.  Her first snack food during her floor picnic times were goldfish.  She had access to them all the time while we were in the intensive part of the NG wean those first few days.  She loves the fishy on the front.

She always heads straight to this musical table after eating because I sing  the ABCs while I clean up her hands and face.  And, she knows that this table sings the ABCs.  However, today, the fishes won her attention.  She even hid a few inside a little compartment on the table so that she could eat some later.