Day 1

I’ve already blogged about the travel. After we landed we took a taxi to the Ronald McDonald House (RMHC) attached to the Children’s Hospital of Wisconsin (CHW). The amenities here are amazing. While the bedroom itself is a little on the small side, it will definitely work and the privacy is lovely. We’ve stayed at RMHC in the past and not felt like it was all that private. There is lunch to go available each day and dinner served each night at 6pm. We have a pantry, fridge/freezer/stove/kitchen available for our use. Here is a music room, game room, book nooks, “magic” room, and many spaces to sit/relax. There is a piano in the lobby which Naomi is welcome to use anytime. 

We can utilize the skywalk to cross the highway and then we are at the hospital! It is like a 10 minute walk from our room to the outpatient clinic and the inpatient BMT unit. While it certainly isn’t home and the children and my husband are not here, I can do this. 

Today we went to the BMT outpatient clinic to meet Naomi’s doctor. He basically said “she looks amazing. She doesn’t look sick at all. I wanted to meet you today to see how ill a child I was getting but I don’t think she will be hospitalized through this week and the weekend if that’s ok with you.”  We are still waiting for the results of Micayah’s telomere tests to know for sure if he will be the donor again. Until then, the plan is for Naomi to attend the outpatient clinic every week day and stay out of the hospital by avoiding humans. The hospital is spotless and so amazingly kept. I know for sure we made the right decision for her. There are 2 nurses who will care for her. The same 2 every day which makes me happy because there is continuity of care that we have lot seen anywhere else. 

When we checked in to the RMHC we had to fill out paperwork and part of it was to mark her diagnosis. It was the first time ever that “Aplastic Anemia” was available. It was then that it occurred to me that we may actually meet another person with AA! It has been this rare “1 in a million” disease that rocked our world….. and no one we know or have ever met has personally experienced it themselves. That is a lonely place because there really isn’t always an understanding and since “it isn’t cancer” there is a feeling of not belonging. It will be amazing for Naomi to meet another person who has personally experienced the ups and downs of this disease. 

After our very quick outpatient visit, we played in the game room, ate dinner (she ate a ton of pizza tonight after days of refusing to eat hospital food), unpacked, set up our room and are turning into bed early. We facetimed home a few times too which was very nice. It was a decent first day. 

Naomi enjoyed washing and drying the dishes after dinner. We have our own pantry, fridge and freezer space and assigned kitchen with stove, sink, etc. there are kitchens on multiple floors. One kitchen has lunch to go meals always available. There are general resource pantries stocked with all kinds of food choices for us to make ourselves. 

I think we need 2 or 3 sinks in the kitchen at home too. That is so awesome. 

(Above) The indoor skywalk to CHW. 

(Above) The outdoor skywalk to CHW which is covered but open. It will be chilly some mornings. 

4 thoughts on “Day 1

  1. Naomi, that smile above lights up my day! It shines a light of relief and relaxation. I bet you will rest well tonight, especially with a belly full of pizza!

  2. We know you’ll do just fine Naomi but we are sending lots of Hail Mary’s your way. 🙏🙏🙏
    Your Farrell cousins in Pennsylvania love you very much! And Mikayah is a loving, generous brother or in other words…HERO! 💞💞💞💞💞💞💞

  3. What an amazing place! Thanks for sharing about it and taking pictures so we have an idea of where you are. We love already seeing Gods provisions for you!

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