BMT Day +11

Today's daily photo is brought to you by Ariauna's cousin MeKenzie.... Who loves basketball..... Go Montrose AAU basketball team.

WBC- 0.3
Hemoglobin- 9.8
Platelets- 23
ANC- not available yet
Weight- 52.8

I slept at the RMH again last night and Jerry stayed with Ariauna. It was great to get some what of a decent night sleep. I tossed and turned a little bit and wondered a little bit what was happening at the hospital, but I am sure I got more sleep than Jerry did. I got up first thing this morning and headed back to the hospital so I could be there in time for rounds. Not a lot happened in the rounds with the doctors this morning. Her fever is finally a little bit better. All the tests and cultures they have done to make sure there is no infection going on have come back negative, which is good. Still not sure what the fever has been about, but at least there is no infection going on. All of her major organs are still doing fabulous and all of her vital stats are staying normal. They are leaving her pain meds as is and her rash and fever are a bit better.  Occupational Therapy came in this morning and woke Ariauna up to work with them. Today they brought a monkey game to start off with. Ariauna had to pick up the little banana's with the plastic tweezers and then put them in to the monkey's mouth. This seems so easy, but for someone who is weak and tired, it takes a lot to squeeze the tweezers and to get them in the mouth. It broke my heart to watch how shaky Ariauna was doing this game. I know she is so weak. Ariauna enjoyed having daddy here to watch her today.

 Once they were done with the monkeys, the Occupational Therapist got out the Zoom ball. Ariauna enjoyed playing with that and it really got her working her arm muscles.

After O.T. we decided we would get her in the shower really quick before someone else came in to work with her. It was nice to have daddy and an extra set of hands. It is not the easiest thing to do a shower by myself. I do the washing, try to keep Ariauna balanced to stand up, try to keep the IV pole from rolling away or tipping over, and do the shower as quickly as possible before she gets to exhausted. What a joke! It was nice to have Jerry to help us and it will be hard when Jerry goes home to go back to doing it alone. Ariauna got a very special package today. We were not sure who it was from or what it was. It had a return address of Bakersfield, California and we do not know anyone there. Ariauna opened the package and there was the sweetest letter from a girl named Aubrey. She had heard about Ariauna from a family here in MN that used to live in Bakersfield. Our friends the Chidester's here in Minneapolis had asked their family, friends and neighbors if they had any American Girl doll clothes and accessories that they no longer needed or wanted to let her know, because she knew a girl who would take good care of them. We'll one of the Chidester girls had been back in Bakersfield visiting for awhile this summer and brought back a couple of outfits for Ariauna from this same girl named Aubrey.  Aubrey is now in the 7th grade and no longer plays or needs her stuff and decided she would be more than happy to share with Ariauna. She sent a cute letter to Ariauna and asked her to take good care of the stuff she had sent. She told Ariauna all about herself and I hope her and Ariauna can be pen pals (once Ariauna gets feeling a bit better). Ariauna was so excited, there inside this big package was another American Girl doll "Kit" that looked brand new. Also in the box was several outfits and accessories, as you can see by the picture. Ariauna was ecstatic and can not wait to play with everything. I will be sending Aubrey a note and then hopefully when Ariauna gets feeling well, I will have her write a note to send too. Thank you Aubrey for your sweet note and your willingness to share your fun toys with Ariauna.

Ariauna decided to get brave today and put her first order in to room service. It was nothing more than a blue powerade. But hey, it was something right?  And to her it tasted a lot better than water.

Then the 3 of us sat down to play the game "Pass the Pigs- Party Pigs". We had a lot of fun playing, it was fun to watch each other play and wait to see how the pigs landed. That determined how many points you would get. It was a really fun game.

By this time Ariauna had been up for awhile and was getting extremely tired. She asked her daddy to hold her and a few minutes later I looked over and she was sound asleep with daddy.

We all ended up laying down and taking a little rest, until of course the next person came barging in the room to see if Ariauna could play. Poor Ariauna, she is so tired and yet people are constantly coming in to take her vitals or to make her get up and play. I do feel really bad for her. This time it was the Physical Therapist that came in, and today she brought with her the Stomp Rocket. I think Ariauna was excited to let daddy see her playing it too. Ariauna had to do some exercises in between each stomp, like balance on one foot, lift her knee up to her chest, and march in place. Then she would get a chance to stomp on the rocket. The therapist was the person trying to aim at the stack of cups, they made a pretty good team. For therapy, Ariauna would also have to help set up and place the cups back in their position by squatting to use her leg muscles.

We had a very busy day! After therapy we did play a few games of Go Fish with daddy. Later this afternoon Ariauna and daddy got in plenty of cuddle time.

The nurses actually did find their good set of shavers, so we borrowed them and Jerry cleaned up the shave job that we tried to do with his little tiny shaver. It looked much better after that, it got rid of all the miscellaneous long hairs we missed.

Later this evening I headed back to the RMH again to do yet another batch of laundry. We had quite the stack of laundry piling up and I really want to get it all finished before Jerry leaves to go home. I helped Jerry get Ariauna all tucked in for the night and then I headed back, got some laundry started and then worked on getting the computer and my headset up and working so that hopefully when we get released from the hospital I can try to work a little bit. We shall see how that goes. Here is Ariauna all tucked in for the night. Her and daddy were going to sit and watch some T.V. before falling asleep.

Today I am grateful for a few things. As I sit and watch Jerry being here with Ariauna it brings tears to my eyes. I know he is hurting, I know he is having a hard time with this whole situation, how could you not be? I know when he got here the other day and saw Ariauna the same thoughts went through his mind that went through my mind. How much seeing Ariauna like this was like watching his mom fight her cancer last summer/fall. Watching her go through chemotherapy, lose her hair, suffer in pain and then unfortunately losing his mom in her battle. My heart aches tonight as I sit and think about Jerry and the fact that he has pretty much no family support through all of this. I will not go into details on the blog other than I can count on one hand the visits/phone calls he has received from anyone in his family. The whole situation with his family breaks my heart. I think of Jerry's mom often, and I know she is also broken hearted to think that Jerry is going through this journey alone without much if any support from his family. There are days I just cry and think, I wish so bad Jerry's mom was still alive to just give him that hug he needs. That hug that every child needs from their mom when things just are not quite right in their life. We miss his mom a lot and know that if she were alive today she would be trying to help us some how. I also want to mention this because I want to thank those friends that Jerry and I have built friendships with, for the friends that Jerry has on his own, for the guys at his work who have been there for him, to help us financially, to help with airfare and just to be a listening ear. I thank the guys at his work who just ask him how things are going. I know men are meant to be tough, but come on now!  This is not just a situation of a child that needs stitches, or a child who has broken an arm. This is a child who is fighting for her life right now, and anyone going through what we are going through knows it can not be done alone.  I can not thank those of you enough who are caring for Jerry and the kids at home. My heart aches all day every day for him, I can not imagine going through what we are without my family. And yes, I understand that girls may be closer to their own family than a guy is..... But seriously, wouldn't it be nice to have a phone call from your dad, your brother, your sister or someone in your family just to know they care?  Oh how I wish there were phones in heaven and Jerry's mom could just call him and say I love you son, I am sorry for the trial you are going through. I know Jerry's mom is hurting right along with us, I know she is right there on Jerry's shoulder putting her arms around him and trying to let him know he is not alone. I am so grateful for my family, for taking Jerry in and being a brother, a sister, a mom, a dad, a grandson, an uncle, etc to him. I am grateful for those in our neighborhood who are helping in so many ways, with meals, our lawn, broken glass, play dates with the kids, love and care packages. And more than anything, I am thankful to any of you who say the simple words to Jerry....."How are you Jerry, how are you doing?" and "Jerry is there anything we can help you with?". As I write this, tears are streaming down my face for those of you who care about us and our family and for the simple things. Sometimes it is the little things that matter the most. A simple, we love you and we care about you. The simple we are here for you, what can we do to help you, are sometimes the most meaningful things. Thank you from the bottom of my heart to all of you who are checking on Jerry and letting him know he is loved and cared about during this most difficult part of his life. Losing his mom was the hardest thing he had ever endured, let alone 4 months later having your daughter diagnosed with a very rare blood disorder and knowing the only chance of having a longer life is a life saving transplant and then being told she needs to go thousands of miles away from home to have it done. There is nothing like seeing your daughter going through what Ariauna is enduring and feeling alone on top of it. May you all be blessed for those "Little things that matter the most". We are also very grateful to know our Savior is there for us, no matter what. We will never be left alone, and we are so very grateful for that knowledge.
 
I am also very grateful again for Jerry being able to be here. As I sit and take pictures of Ariauna and her daddy together it brings me so much joy and yet brings me to tears knowing, it is only for a few days and then he will have to go back home again. Back to reality, working, being Mr. Mom, and taking care of everything at home. Oh, how I wish I lived in a fantasy world right now, where our family could all be here together living in Minnesota. How magically our house payment would get made, along with all the other bills that we have. How somehow, everything at home could be taken care of and we could just live her together until we could all go back home. Oh how I wish I could have all four of my babies here with me, laughing, running, jumping, I would even deal with them arguing... I miss being together as a family so much. I long for the day we can all be together again. I am so grateful for those who are helping me take care of the kids at home, but this is killing me. This is literally killing me to be separated. It has been almost a month and a half since Ariauna and I left and it is killing me. When we left, I thought I could do it. I thought I could be strong, but I can't. Today I decided, I can not do it anymore. I have been having anxiety about not having the kids with me and today I decided, I can not do it anymore. I have booked tickets for the kids to come out in October and they will be staying here with me. The minute I made the decision to do this, it was as if a huge burden had been lifted off of me. My anxiety immediately calmed down, and I felt at peace with this decision. Yes, it has been a difficult decision to make. Yes, I thought long and hard about it, I have prayed my heart out about it and pondered about it for weeks now. We have discussed it as a family, we have talked to school teachers there, and here and we truly feel like this is what our family needs to do. I think it will be a great thing for all of us and I truly think it will help Ariauna not be so down and depressed and will hopefully help her. I truly feel like this is the right thing to do and I am now just counting down the days for them to come.  I still miss them a ton, but now knowing they are coming to be with me and to stay here with me until we get to go back home I feel like I can go on each day and just count down until we can be together again. We will take it a day at a time and see how things go. If for some reason Ariauna has a lot of problems (knock on wood that is not the case) then we may have to re-evaluate and pay the fee to change the flight and send them home. But we are going to hope for the best and get the kids over here with Ariauna and I. Hopefully by the time the kids come, Ariauna and I will be back at the RMH, I have enrolled the kids in school over here and they will be here with me until  we go home. I will be worried about Jerry, being home alone once the kids come over here. But hopefully it will give him more time to finish the basement and to get the house carpet cleaned, and sanitized well before we come home, and we already have tickets for him to come and see us a few times (thanks again to the Condie's donating some more frequent flyer miles). I am truly feeling blessed and that things are going to be okay. And I will continue to count down the days until we can be together again!