What a week.....

First I want to apologize to all of you who get on our blog every morning to see what is happening in our lives. It has been a week since I blogged, and what a week it has been. I apologize about the lack of blogging here at home. By the time bed time hits, I pretty much fall in to my bed. I have tried to blog in bed a few times and end up falling asleep doing it. At the hospital, I had more time.....I think that is pretty much self explanatory!!  Here at home I have 4 kids instead of one that need my love and attention and a house to clean, laundry to do, a room to build, doctor appts, dentist appts, all the things we need to do to leave the state for 4-5 months. A lot has happened in the last week, so let's see where to start. I think the last time I blogged about much was when we saw her surgeon. Ariauna is enjoying being off her feeding tube a little during the day and only being on it at night. Her appetite during the day has increased a lot and she is eating a lot more by mouth. Yay! Monday night we had girls night at grandma's house and had fun visiting with grandma, our Aunts and our cousins and we even got a little bit of work on our crafts done. Here are Sadie and Ari getting loves from grandpa before we left.

Tuesday I had my dentist appt and our friend Tammy watched Ari and Jack for me. After my appt Ariauna wanted Maddie to come play for awhile at our house so here they are having fun out back and having a picnic lunch.

 

 

After school our cousin Camilla came over while Aunt Angela went to a meeting about the Carnival. We had lots of fun and even did some Just Dance on the Wii.

We ended our night with something the kids have been wanting for a very long time. The good ole fashion Watterson traditional treat.....Purple cows!

Wednesday Ariauna was counting down the hours for school to get out so she could have a play date with a friend from school Maddi. She spent most of the evening over at Maddi's house playing. We actually joke about this picture saying that Ariauna looks like a vampire, because indeed she is getting hungry for blood. I told her it is too bad we don't just have extra bags of blood laying around we could dump in a cup and let her drink like Bella from the Twilight movies.

Thursday was yet another busy day. I had my visiting teachers come in the morning, and what a blessing it was. I am grateful for their visit that day, I needed it. I have had a rough week and will get into that at the end, but I am so grateful for my visiting teachers being there to listen and to comfort me. Danika (Ariauna's home health nurse) came to draw her blood and look what she brought Ariauna.

After school Ariauna had activity days and she has been looking forward to it for awhile. They were doing cake decorating. She went and had a great time. Right after activity days we went as a family to pick out new bikes for the girls. The girls both want new bikes for their birthdays in August. Toys R Us was having their bike trade in sale right now and it ends on Saturday so knowing Ariauna is most likely going to be in the hospital for her birthday we decided to take them to get new bikes and let her enjoy hers right now as she wont be able to go out and do that for a long time after the transplant. Here they are with their new bikes, and Jaxon out there trying to follow them and be as big as they are. HAPPY BIRTHDAY early girls!

 

They spent the majority of the evening on their new bikes. Later that evening an old friend and neighbor that used to live in our ward came to visit with a special gift for Ariauna. Her first new things given to her to wear when she looses her hair from chemotherapy. She is so excited and happy that we can pack them in our suitcases to take with us. Thanks Anjanette Hernandez, she will be the most beautiful bald little girl in Minnesota.

Friday was just as busy as every other day. Ariauna's feeding tube got clogged again at 4:00 a.m. Jerry could not get it to flush when he got up for work. So we put some coke in it and let it sit until Ariauna got up. I still couldn't get it to flush so we put more coke in it and headed out to the school. Sadie's teacher Mrs. Bressler invited Ariauna, Jaxon and I  to come watch their class let their butterflies go. They have been doing several weeks worth of learning about caterpillars turning into butterflies. They had little friend caterpillars on their desks in class for a few weeks until they turned into a ca coon (or whatever the proper word for it is....crystallises or something like that) and then they hung them all on the top of a mesh hamper until they all turned into butterflies. I am grateful for this experience, thanks Mrs. Bressler. I have thought a lot lately about the saying..... Just when the caterpillar thought the world was coming to an end, it turned into a butterfly. It reminds me a lot about Ariauna and her chance of having a new life! Here are the girls letting their butterfly go.

 

While outside doing butterflies a few fireman walked towards the class and stood there and watched the butterflies being released. When we were done, they asked Mrs. Bressler if her class would like to see a firetruck, get stickers, and ask questions. She had do idea they were coming to the school that day, and her class was just lucky they happen to be outside doing butterflies. I guess they have been trying to go to some local schools to let the kids have this experience.

I still continued having issues getting the feeding tube to flush so I called the home health nurse and she said she was just about to call me. Primary's had called her and when they got her lab work results her blood work was all out of whack and they couldn't read it at all. So she needed to come out and redraw her blood labs. We had to do some errands this afternoon and then the girls played with the Harmon girls for awhile riding bikes and playing in their amazing play room. Danika came and drew her labs and also tried to get the feeding tube to flush and she couldn't get it to either. I called the surgical team at PCMC and we talked about maybe switching her to an NG tube (which is in her stomach) instead of her NJ tube (which is in the intestines). Hopefully she is healed enough from the surgery and hopefully her tummy would handle the feedings there. So they put an order in to home health to come place a new NG tube. Home health can place it into the stomach but in order to have them replaced in the intestines it has to be done by x-ray to make sure it gets in the right spot. Yay, at least we didn't have to go to PCMC again. I seriously think my car can drive there by itself these days. Ariauna was not happy about having the new tube shoved down her nose. The poor girl, that was the worst part of her hospital stay, and they keep getting clogged and she has to keep having them shoved down her nose. Ugh! Later on, Ariauna had a sleepover planned with her friend Maddi at our house. Of course I don't want to send a feeding bag and do a special course of training to all the mom's so Ari can spend the night somewhere else. That is just what all of Ariauna's friends moms want is to be up at 2:00 in the morning with a feeding tube beeping. Here are the girls having their "High School Musical" night. They played outside and rode bikes for a chunk of the night and then watched a bit....okay a lot of High School Musical movies. Thanks Maddi and her parents for letting her come and give Ariauna an extra fun night. I am so grateful to all of the mom's in our neighborhood and surrounding neighborhoods who have talked to there little girls and explained about Ariauna, why she has a feeding tube, why she wears a mask in large groups, ect and are making an extra special effort to help Ariauna have a lot of fun before heading back to the hospital for an even longer stay. Thank you, Thank you from the bottom of my heart to all of you!

 So now for an emotional update on all of us. Ariauna has been doing pretty well considering her blood levels.(which no we have not heard her update for this week and probably won't until Monday morning). Luckily she has not become symptomatic yet. Also to answer a lot of people's questions including my own.....I talked to the doctors to see if I am letting Ariauna do too much (speech, special ed, church, activity days, play dates, riding bikes, ect) and they said it does not matter what she is doing her blood levels will continue to drop until she has the bone marrow transplant. So rather I let her go and do, or rather she sits on the couch and does nothing her blood levels will continue to go down. So the doctors have said as long as she is not symptomatic from her levels being too low, she can do what she feels like doing. So we will take it a day at a time. I have a feeling when she gets symptomatic it is going to happen and fast. She will probably be playing and all of a sudden have no energy. Ariauna is a tough girl. Not sure I could be doing all she is doing with such low blood counts. I think she knows she is going to miss out on so much that she is trying so hard to get everything in all in one day! She continues to smile and laugh. I think she is getting a little more nervous about going to Minnesota, as am I.

As for me, well it has been a week. I have struggled a lot since the phone call from Minnesota saying our insurance approved the consultation and the bone marrow transplant. I think when Ariauna was in the hospital for 5 weeks I was so focused on getting her well from surgery so she could come home and even though I had days and times I broke down about the Fanconi Anemia, I really think I was numb and in shock and deep down I knew she would have a bone marrow transplant but I think I put it aside and focused on the day and the moment. Since being home, I have been extremely busy. Not enough time in the day, and definitely not enough time to love on my little one's. The day Minnesota called to see what our schedule was like and when we could fit in the consultation I have been a complete mess. I feel like I am breaking down all the time. Just the little things, I start to cry and then I keep on crying. I think it is finally hitting me that this is happening and it is going to be soon. I am scared to death, heartbroken, and afraid. I try to look at the positive, but it is so hard when there is so much to worry about. The day they called I just cried and cried. Every time I would look at Jaxon I would cry, every time I would look at Ari, Sadie, Austin, or Jerry I would cry. I talked to my mom and I cried, I talked to my visiting teachers and I cried. I am just crying a lot more these days. We have not heard back yet when the doctor can fit us in to her schedule for the consult. Hopefully I will hear something at the beginning of the week, and I promise the minute I hear, I will get on the blog and let you all know. I can not explain what I am feeling and how I am feeling to anyone. I know there is nothing that anyone can do to make it all go away. I am so scared for my little girl, so scared of what she is going to have to endure along with the rest of our family but especially her. I am scared of her getting so sick and not eating and drinking, I am scared for her to lose her hair. I know I will love her with or without hair but I am scared for her, scared for when she see's herself the first time without any hair. I am scared of the bone marrow and if her poor little fragile, tiny body will accept it or reject it. I am scared to be alone!  I am so scared of being alone. I am going to have plenty of time while Ariauna is sick and sleepy to just sit and hold and rock my baby and think. And everyone knows how us woman worry when we THINK.   None the less, I have a lot to be grateful for and I am reminded of it daily. I am grateful to have a family, I am grateful to be a mother. I am grateful and feel it an honor to be Ariauna's mom. She has brought me so much joy, happiness, and has such a sweet spirit about her. I am grateful for friends that continue to do so much for us. I am grateful for the monetary donations that are being made in our behalf. I have gotten cards in the mail with money in them, Jerry has had people at work that have just handed him some cash. We are grateful, and want everyone to know how much it all means. The "Carnival" crew continues to plan an amazing event, even with issues that have came up. They keep there chins up and continue to press forward for our family. I have friends that are doing everything in their power to help us in every way that they can. I can not thank you all enough. I continue to thank my Heavenly Father everyday for the blessings in my life. I could definitely be focusing on the negative, I could definitely be sleeping the day away. But I can't and I won't.....I have people who depend on me, I have 4 beautiful kids that I wake up to each and everyday and a husband who loves me even for all of my faults. I have extended family that is constantly checking on me and doing anything and everything they can for us. I have angels all around me and I will continue to thank my Father in Heaven for each and every act of kindness in our behalf. May the Lord continue to bless Ariauna, and may he continue to bless each of you for all you are doing in our behalf. We love you all and pray for strength, courage, hope, and faith that we can beat FANCONI ANEMIA.  If it were not for all of the angels in my life, I couldn't get up each and every day and look in the mirror and face this fear that is before me.  Thank you for everything!  Much love, Natalie

P.S. With my crazy week, I just had to share what my hubby brought home for me!

My all time favorite treat in the whole world right now!  I have this unbelievable craving for this stuff. Almost as if I am pregnant (and no I am not). And yes, he brought me five but I downed one the minute he gave it to me. My very own stash to have on days, I need to just sit and sulk. And no, I do not share!!