Saturday, 7 July 2012

Day 14 Continued

It's amazing how remembering the details is already difficult and that's exactly why I am trying to write every day. I want to have the experience documented for myself, so that one day when I am not living on auto I can look back at this and actually remember something that happened, especially yesterday. If Millie engrafts on the average day that most cord blood transplants do then she is half way through this. GOOD JOB BABY GIRL! You are still smiling, you are still a goof, you are still a tease, and I am more and more impressed with the person you have already become in 6 years. The way you have handled the past 3 is how I hope to be the rest of my life. How can such a little thing teach me so much? 

Day 14 (July 16) was honestly her best yet. I don't know how she does it, but if any of her doctor's mention that things are catching up with her then she has to prove them wrong. Yesterday she spent the day crafting, teasing our tech, Brek, and hiding things from Andi, our nurse. 

She even lost her 2nd front tooth! It's been ready to come out for awhile, but with everything going on we didn't want to pull it. It fell out while she was brushing her teeth. She was beyond excited! When did she get so big?

Millie has really taken to the Music Therapist, Toni. She brought along a student with her and also a new therapist that just started at Primary. Millie loved it and so did I. I just sat back and listened and it was beautiful to listen to them all harmonising with Millie, and playing off whatever she was doing. It was really impressive.  Millie also sang the song she wrote all by herself. It's truly beautiful but the file is too big to email, so I can't post it. 

The Lyrics:

I like how you look, just the way you are. Just the way you are.
I like how you are, just the way you are. Just the way you are. 
Hymning the tune.....................................................................
I like how you are, because you are a star, Just the way you are.  

We also had a ton of visitors yesterday. Our sweet, sweet neighbor  Lisa stopped by and Millie entertained her, but singing.... you guessed it, Party In The USA. 

It was also my Big Sister Codie's birthday so they brought lunch to me at the cafeteria and then came up to play with the Miss. 

Grandma Jager, Aunt Lindsay, Millie Billy, Aunt Codie, me

Grandpa Jager getting a little extra luck by rubbing Millie's head.

Even the cousins got to play. 

Brady left Friday night and headed up to his family ranch to go spend some must needed time away from the hospital and with Austin. On his way he brought Millie's dog, Jack, by to see her. Of course he can't come in the hospital so she watched him play outside the window. I was a little worried it would just make her sad but she was so happy about it I even got a thumbs up. 

The night went well also. She was getting up so much to use the rest room from all the fluids she gets in her TPN and Lipids that I asked if we could length the time they are infused and it made a huge difference. No more bathroom trips every 1.5 hours.

1 comment:

Piano Mom said...

Amanda, I am so glad you're documenting each day. I know at times it's hard to find the time, but it's SO worth it. I have hardly gone back to read Erin's daily blog, but the few times I have I think, "wow, I forgot that" or "did we really do that all day?"

I know that someday Erin will read it all and since she won't have remembered experiencing it, it will be a big testament to how amazing she is and what she has overcome.

I am so amazed at how much this transplant has been less strenuous, you know what I mean, it's hard, but not as hard as you might have expected and I think that is a tender mercy that was blessed upon your family.

I love the NICO shirts and I am so happy that Millie has had so much to keep her entertained. We loved music therapy, I would beg them to come nearly every day, they were such a HUGE relief for Erin, she was mesmerized by them and was always a million times happier when they left. Music soothes the soul.

I want you to know we're still thinking and praying for your family.