Outpatient Day 4.....

Today Ariauna had more appointments and some tests done so she couldn't eat after 4:00 a.m. We had our first appointment at 8:00 so we were up at 6:30 a.m. again (that is why the lack of blogging right now, late nights and early mornings). Our first appointment was suppose to be a Hickman Line Consultation to teach us more about the Hickman line she will be getting placed tomorrow. But the lady who was suppose to teach it didn't show up. Everyone at the clinic was so worried, because she is never late. They ended up bouncing our appointments around a bit until they could figure out what was going on with the lady. So we ended up meeting with Heather the Genetics counselor first. It went fine, it was just to let us know they are still pending the final results on all the genetic testing they did on her back in May when we came to visit. We also discussed trying to get approval from our Insurance company to see if we can get the other kids tested for Fanconi Anemia while they are here visiting us in October. They finally got a hold of the lady that didn't show up this morning and so we ended up meeting with her next about the Hickman line placement. She discussed the procedure itself, the care for after the procedure and care for the line itself. While I was doing these morning appointments Ariauna was bored, so she went with Tara the Child Life Specialist. They made 4 owls with Hickman lines so she could send them home to her brothers and sisters to explain to them a little more about her Hickman line and what it is like.

 Then she had the ultrasound of her abdomen, that will check her kidneys, liver, lungs,bladder, etc.

Because of the one lady being behind this morning our 2 hour break ended up being a short quick break. Long enough to grab a bite to eat since Ariauna was starving. Once she was done with the ultrasound appointment she could eat again. After our quick lunch we had an appt at 1:00, a Pharmacy Consultation that went over the millions of drugs Ariauna will be on before, during and after transplant. She went over each of them in depth, what they are for and what the side effects are. It broke my heart, to think of all these medicines she will be taking. The main one's that are going to make her sick is the Radiation she will have and then the chemotherapy drugs and the steroids. But I am not kidding when I say she is going to be on a lot of medicines, drugs, pain meds, nausea meds, meds to keep her white blood counts up, meds to help her so she does not get GVHD (Graft versus Host Disease). I just can not even imagine all the drugs and IV's they will be giving her. Our last appointment today was with Pat (the Nurse Coordinator). She went over a lot of information about her tests, being admitted and what to expect. While talking with Pat, my cell phone rang and it was a Minnesota number so I grabbed it. It was the Ronald McDonald House calling to say they had a large room available for us. We were so excited. And even more excited it was a large room to start. They thought for sure they would have to put us in a small room and then in time move us again. We can not wait to get settled in and unpack our suitcases. We were so tired and looking so forward to going back to the hotel and just vegging the rest of the night. The RMH house said we could either come tonight or tomorrow. The problem is, tomorrow Ariauna is having her Hickman line placed and then is suppose to rest for the rest of the day so her chest does not bruise. So we decided we better get the move done tonight so she could just rest like she is suppose to tomorrow. We finished our appointment with Pat and then went downstairs. We had a few minutes before the shuttle would be coming so we went over to the lobby and Ariauna walked around the princess activity they were doing. They had a bunch of princesses and some of the pageant ladies all dressed up there. They had fleece pillows to make, crowns, treats, crafts, coloring, goodie bags, a fishing pond and face painting. Ariauna had a lot of fun.

We then took the shuttle and headed back to the hotel. When we got there, they gave us another package. It was another love chain package. This time it was from the King's. Ariauna was so excited. She opened it and this is what we got.

We got a journal and pen for me and some really fun Lalaloopsy stuff for Ari. There was a cute bag, a coloring book, markers and a lip balm. Thank you King's for a very fun gift. We quickly walked over to the post office and shipped off Sadie's cute birthday present from Ariauna and I and shipped the kids their owls that Ariauna made. It is only about a 3 block walk from the hotel, but will be a bit further from the RMH. Then we came back and got all of our stuff loaded up. Here is Ariauna as a kitty cat ready to start loading our stuff on the cart. 

At this point I was really missing the men in my life. I really could have used Jerry and Austin at this point to get our stuff loaded and carried down to the shuttle. Here is Ariauna thinking she is wonder woman, it wasn't long and I had to take over.

As you can see we have added a few bags since we first came. I have no idea how we are going to get everything home when it is time.We checked out of the hotel and ended up having to pay for that night because it was a late check out, but for Ariauna's sake of resting, we needed to just do it anyway. The hotel was nice enough to take us to the RMH. As soon as we got there, they were there to greet us. They helped us get all of our stuff on some carts. We filled out some paperwork with them and then they had a volunteer help us up to our room with our stuff. We were so excited!  We just sat in awe to realize how nice it was going to be to be in a little home that has a couple of rooms instead of a one room hotel room. We are so grateful for this RMH and the meaning behind it and that they are there to help families like us. I could once again feel my Heavenly Father's hand in this journey we are going through.We only ended up having to pay 5 nights in a hotel room and it could have been up to 14 nights. I know my Heavenly Father is watching over us and I am so grateful. The same time we arrived, the staff was downstairs with the volunteers doing dinner so we quickly dropped our stuff in our room and then went downstairs for dinner. They had Taco salads so we had that and then it was Bingo night. We stayed for a little while and Ari and I both won once. We both picked a puzzle as our prize. Then we were both just exhausted so we headed upstairs, got some pictures of the RMH so we could put them here on the blog for people to see and then we went to bed. Here are the pictures of the house:

 

 This house has a main living area in the middle and four houses on each of the four corners of the main living area. This Ronald McDonald facility currently houses 43 families and 95% of the time is full. House 4 is usually set aside for families that have a child going through a bone marrow transplant. So we are in house 4 on the 4th floor in room 5, so our room # is 445. Here are a few pictures of our new home away from home.

We are so thrilled to have this little place to call ours. It feels just like a little home. We brought pictures from home to make it feel even more like our own little place. We eat dinner every night with Jerry, Austin, Sadie and Jaxon's picture sitting right there with us. We have family pictures all over to remind us of our loved one's at home. There is a washer and dryer on every level of the house. There are 4 other families on the 4th floor that we share the laundry with. We found out quickly that Saturday is not the day to try to use the washer and dryer. These next few pictures are of the main common area. This is where local families and businesses come in to fix dinner every night and they make brunch on the weekends. It is all free to the families staying at the house.

These next few pictures are of other kitchens. So around the common area, there are six other kitchens fully stocked with everything a kitchen needs that you can use to cook your own meals.

The rest of these pictures are other fun things the house has that anyone is welcome to use. There is the school room that has a district teacher that teaches grades k-12 and the school runs the same schedule as the local schools and is out for the summer. The kites in the school hall are summer field trips they have taken and pictures of each of the activities. Ariauna will get to be on the wall soon.

There is a full size gymnasium in the bottom of house four that they use for school P.E. and families are also welcome to use when the school is not using it.

The Castle is where you will find all of the little girls in the house playing. It is definitely a favorite.

There is also a game room in the basement of one of the houses that has several arcade games, fuse ball and an exercise room just across the hall.

 One of the houses also has a movie theatre in the basement. They show movies every Friday night and several Wednesday nights. It is such a fun room! It has a Cinema sign on the outside and straight in the door is a little concession stand (however everything is free at this one) with candy, popcorn and drinks. There is recliners, couches, banana chairs and bean bags all over with a huge supply of blankets. It is lots of fun!

One of the other houses has a scrapbook room in the basement and all of the supplies are free. Wish I would have had room for all my pictures. Lol...

 Last but not least is all the fun things outside. The first picture is the playground out front and the rest of the pictures are in the courtyard in the middle of the houses. The kids all love to go outside to play, as you can imagine.

As you can see it is a beautiful place. We have met so many wonderful people already and are excited to meet more. We have so much to be thankful for! So thankful to those who make the Ronald McDonald Houses possible and for all the volunteers who provide activities, food, rides, and much much more.