It feels sooo good to be back on my OWN computer. I had sooo much trouble with the hospital set up. I had intended to do more posting. Oh, well!!
Wednesday was such a busy day for Sumana. It was THE DAY to start walking. It took til 1:00 pm to get her into a sitting position. In the meantime, they had disconnected her IV tubing and taken out the catheter. The bummer was that she had to go to the bathroom soon after just sitting up. By the time she got to the toilet and figured out how to sit down, she didn't have strength to get up! She was nearly hysterical. (I need to work on my compassion, because I really could hardly stifle my laughter. It was soooo funny, especially when she dug her heels in and said she was not moving!!!) Thankfully, she figured out a plan and made it out of the bathroom. Each subsequent trip got easier and easier.
The BIG deal was in the afternoon AFTER the toilet incident. Four therapy dogs visited her unit. We met up with all 4 of the in the play room. She was in a wheelchair (hadn't taken any steps that didn't involve the bathroom). So, I had the dogs at one side of the room and Sumana had to get up and walk to them in order to pet them. She did it twice!!!
Last night was horrible, though! At 8:00 pm we were told that a sick 2 year old girl would be moving into our room because she needed to be close to the nurses' station. We were given the option to move and after hearing the nice LOUD white noise that came with her, I declined to move. The noise was much preferable to the 2 month old baby crying all night in the room next door. So, Sumana and I promptly went to sleep-- only to be awakened at 10 and TOLD we had to move. We only had 10-15 minutes to wake up and gather all of our stuff and move in with a 2 month old baby (thankfully a DIFFERENT, quieter one!). All in all (and thanks to some awesome earplugs!) we got some pretty good sleep last night.
Today, Sumana walked with a walker from our unit, across the hall to the other children's unit. She met a 4 year old girl who had gotten a 'halo' on Monday (courtesy Sumana's Dr. Sanders!). Her mom and I left the girls to their wind sock project and went down the hall for some coffee and snacks (courtesy Ronald McDonald House!). It was so encouraging to hear Becky sing the praises of Dr. Sanders. They have been 'with' Dr. Sanders for 3 years; moving from Erie appointments to Rochester appts.
I guess that's one thing that I was surprised about: the number of kids with cancer or serious, long term respiratory issues AND the wide range of places these kids have traveled from. Pennsylvania, Ohio, Buffalo, Syracuse, Jamestown, etc!
I wish I wasn't so tired. I'd love to share stories about the 10 year old girl with neuroblastoma, the Mennonite woman who has been at the hospital since January with her young child, the multi-racial couple that hasn't made it home YET after the birth of their baby 5 months ago. Everyone we met had the same determined passion to advocate for their kids.
When we got home I found my frig and freezer full of food! Unbelievable! We are so grateful for the outpouring of gifts for Sumana and food for the whole family. Your prayers and acts of kindness are so precious to us. Once again, you're putting your faith in action. Thank you!