BMT+2 (day 18)

Micayah and I stayed up late the night before so we had all morning to visit Naomi.  He was feeling very torn about leaving.

She wouldn’t let him out of her sight or his reach.

One last photo before we walked out the door.

During Doctor’s rounds they discussed continuing to wean Naomi from meds. She moved from every 6 hours to every 8 hours for some now. As long as her vitals hold well, they will continue the wean.
A friend from the RMH, Sherry, stayed with Naomi today while another friend, Kerri drove me to the airport. I am thankful for them both. Before leaving Micayah and I had pizza for lunch at RMH. We left with plenty of time and ended up rather early to the gate. It took us only 11 minutes to get me an escort pass, check luggage, get through security and arrive at his gate!

I hung out with him at the gate until he boarded.

A taxi was $55 from the airport when we arrived 19 days ago. So I decided to take the bus. I’d never taken a public bus system anywhere before. That was a new adventure. It went rather well with me only needing to change buses once. It took over an hour but the $4 fare was much preferable.

Naomi and Sherry played with the beach ball and “a squishy thing” that is a balance spot PT gave her “to work on gymnastics skills” and also kick ball in the hallway. Sherry said Naomi wore her out today and had A LOT of energy.  Naomi also got a drawing assignment from an insurance company who will use her drawing in their annual calendar. She started that art project today and will continue it tomorrow. Sherry and Naomi also put together a 500 piece puzzle. That’s how we met Sherry – doing puzzles at RMH and she adores Naomi (and adored Micayah and treated him like her own making him sit after surgery, clearing his plates for him, letting him stay with her while I did chores and errands). Again, we are so thankful for the wonderful people we’ve met here.

As the bus neared the RMH, I passed Naomi’s room and could see the other side of the construction outside her window.  It is weird how my perspective of Milwaukee is so limited by my view out the window.  I appreciated the bus ride today because it allowed me to see more of the area and experience the people there.  It was the first time I’d been in a vehicle in 18 days!  It honestly felt weird to be in a moving car at first.

After being on the bus and back at RMH, I decontaminated myself by washing up and changing clothes.  I stripped the beds and gathered dirty laundry. I never did get to wash any of it though as I was on FaceTime with the kids and then Aaron until late last night.

I grabbed Subway sandwiches for me and Naomi on my way to her room. We had lunch together in her room. I love that she is not on any special diet.

We opened some gifts that arrived from friends at home. She loves her little Twosies and we smelled the million new scents of hand sanitizer sent our way. All the cards, handwritten notes and cards sent from friends made Naomi tear up, especially those from children she knows back home.

A few weeks ago, Naomi and I planned a “transplant blanket” that we would knit together. I know I will end up doing more knitting than her. We saved that project for after Micayah left. I took the yarn with me to her room and we started working on that. Just barely, really, and hardly a start. But having a plan is good and we are excited about this blanket.

Naomi ordered dinner but wasn’t really hungry. So I looked on Netflix and found The Great British Baking Show which sounded like a great win/win. It could stimulate her appetite and be fun to watch. We would continue to watch a second episode after she’d eaten because it is such a great show. I’m glad we have 3 seasons to watch while getting through the rest of the engraftment wait. I’m not sure it will help a weight loss plan for me though.

Naomi was extremely cuddly today but we continue to have relationship issues 4 times a day over the mouthwashes. So I resigned from mouthwashes today. I requested that the nurses put mouthwashes on her schedule, pour the cup and pass it to her leaving me out of it completely. On Friday’s rounds I will also discuss it with the doctors. Perhaps they have another alternative for mouth care? Without those mouthwashes, Naomi is a fun, sweet and loving child. I mention them though and it is like a switch on her flips. I won’t do that anymore. After 12 days of being an inpatient and having to do them, her resistance to them has really only gotten worse.

Micayah arrived home safely and right on time. I am so thankful to Erica, a midwife and friend who picked him up. I texted her to ask if she’s found him at the airport and got this in reply:

Sinéad especially was happy to see him. As was our dog, Aslan. Micayah took 15 bags Of breastmilk home with him. I packed it all in an insulated lunch bag inside his checked luggage. I am thrilled that it was still frozen solid when he got home!

Seeing him on FaceTime instead of here was strange. I feel like I’ve lost someone and keep wanting to go get him back at the RMH or in the family gathering room at the BMT unit. It feels like he should be coming back to us in her room. The RMH for me is lonelier too.

3 thoughts on “BMT+2 (day 18)

  1. So glad Micayah made it home safely, Praise God! My heart broke for him having to leave you and his sister. Quite a bond he and Naomi will have for the rest of their lives. I am so glad you and Naomi are knitting. I am a knitter myself and I love it so much. It is fun and very therapeutic. Thank you for your wonderful blog and photos. I continue to pray for you all.

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