Tuesday, April 12, 2011


And we are almost out of here. I am thrilled. Thinking of sleeping in that soft, cozy big old bed with my lover and with both sweet girls across the hall is fabulous.

It will be a little odd to not have some strange nurse poking their head in the door with the nurse who is leaving at 6:30am just to "make sure Piper is here". Seriously? Was sneaking out at midnight an option? Or the wonderful, highly educated doctors who open the handle to the room, crumpling the note that I place right there that says " Piper is sleeping...please come back later" and walk in speaking loudly and looking around for her. And no, you may not take a listen. She is here, ask the nurse. She is well, ask me. Thankfully the therapists are great and my Piper is leaping and bounding out of here.

Two weeks ago, she struggled to sit unattended for long. Today she is going from sitting to a crawling position and back again. Two weeks ago she could not stand alone. Today her favorite thing to do is to push the baby carriage down the hall with minimal assistance. Two weeks ago she stared at toys and playthings. Today she loves to color, play play-doh and Little People toys. Two weeks ago her vocabulary and signing had reached a plateau. Today she can also sign "play" "open" and "done". Two weeks ago we felt blessed to get a little smile out of her. Today she belly laughs, smiles on command, blows kisses, shows off parts of her body and waves first thing when she notices someone laid their eyes on her.

We spent all day today in a rush. Dr. Bergsagel chose to go ahead with Pipers monthly chemo which just so happened to be a sedation/spinal chemo. So she was NPO until 11am but completed an hour and a half of different therapies before the procedure. She was also photographed for some physicians bulletin they are putting together about the therapy dogs the hospital uses. Then in the midst of the sedation she swallowed some fluids which affected her breathing and spent the next hour being watched as she was given breathing treatments. We then went to grab lunch down in the cafeteria, came back to the room, ate, fell asleep at 3 only to be awoken at 4 to go downstairs for a CT scan to ensure no fluid on the lungs. Completed that, came back to room, did two more rounds of therapy, fell asleep, got visited at the same time by all the Dr.s who check on her , woke up. She then was due for her monthly dose of IVIG which is a boost of antibodies for her little body that she has reacted to in the past and now gets benedryl, tylenol and a steroid for. She began the transfusion which ran for 4 hours, had blood taken to check her CBC and CMV levels and then was put through the apparent horrors of a bath. Smelling much improved she and I cuddled on the bed and she did her nightly routine of spreading lotion all over her legs and arms and usually, my ears or other body parts she finds funny. And she zonked out at 10 and I have big plans to squeeze a shower in before zonking myself.

All in all this visit has been superbly beneficial. I don't ever want to have to come back again but I am glad Chad and I made this decision, despite how exhausting and frustrating it is for everyone involved. I think I need these random hospital stays to be reminded of just how good I have it back home in that itty-bitty apartment.


  1. I haven't posted a response in awhile BUT know that I have thought about you and prayed for all 4 of you daily. Rejoicing that Piper has made so much progress these last two weeks. I know that makes your heart happy to see her toddling along with her grocery cart. Since you've been admitted my prayer for you has been Psalm 121. Looking forward to reading a post once you guys are settled back home.

  2. Sounds like a very successful and exhausting two weeks...
    I can't wait to see y'all! Hurry home:)