We have been home just over a week now.....

I am sure several of you were beginning to wonder if I was ever going to get back on the blog again. I apologize, it has been one of those weeks. Now that we are home, I am sure you don't all really want to know every little thing we have done, every single day. So most likely I will not be updating the blog everyday. I will try to post frequently though and give you updates on some of the highlights we are having in our life. This week has been a big "WELCOME BACK TO REALITY"!!!  It is really amazing how you get so caught up in the "hospital life" that it really took some time to re-adjust to reality. Just the small things, like getting in the car and driving home were strange.  Let alone coming home to a million things that need to be done, bills to be paid, a house to be cleaned, getting back to my job, yard work, kids to get to school and other activities. I am not sure I missed all the chaos. I sure missed my husband and my other three beautiful kids, but I certainly did not miss the hustle and bustle of life.  It took me a few days to realize that even though my heart has been crushed and is aching, life still goes on. Even though I truly felt like I could just take a few weeks to get back to life, it didn't happen that way. The minute we got home the chaos began. And as if I wasn't a busy mom before now I need to find time to do home school and in between the chaos we need to change the bag on the feeding tube every 24 hours, flush it every 4-6 hours, administer antibiotics through it every 8 hours and then flush the PICC line every 12 hours and try to keep track of how much she is eating/drinking by mouth and keep track of when she has bowel movements so we make sure everything continues to move through. So we are busy from sun up until sun down. Here is a bit of our week in a nutshell....  We got home Saturday, spent the afternoon getting packages delivered of home health supplies to be able to take care of our daughter at home, waiting for a home health nurse to come and set up her feeding machine and teach us how to run it all and we celebrated our little guy's birthday with just the six of us. See previous post about that.  Sunday we actually went to church as a family. It was nice to get spiritually fed, after five weeks I was truly feeling like I needed to go to church and get spiritually fed to help me make it through another week. Ariauna wore a mask (per doctors requests when we are in a public place). We thought we would just go to sacrament meeting and then leave but Ariauna really wanted to go to primary. I did not want her to over due it by getting too tired, but I also know she is only going to have a short time of being able to attend primary and then won't have the choice to go for a year. The only visitors we had stop by today was the Koehler's. The Koehler girls had drawn some pictures for Ariauna and they dropped them off to her. We spent the evening having a family movie night on the big screen and watched the new to us "Breaking Dawn 2".  Monday I woke up and started off in not such a great mood. The feeding machine went off all night long. I had to go in three-four times to fix it and to get it to stop beeping. It made for a short, sleepless night which then made for a very long Monday. All weekend I had spent sick to my stomach about going back to work. I know we need the money, but the fact of leaving Ariauna just killed me all weekend. I knew I needed to get in touch with my job at Target and let them know I could work again, but deep down it just didn't feel right. Jerry and I talked a lot about it and decided that after her bone marrow there is no way I could go back to work at Target. With the other things we have going in our life that keep us running around and in and out of the house/car, there is no way we can do that to Ariauna and I will not leave her home alone in case something were to happen. So after much thought and prayer, I decided to quit my job at Target. I am going to miss my red and khaki family. I know that sounds really crazy, but I really enjoyed my job at Target. I enjoyed the people that I worked with. I met some really great people and made some really good friends there. But my family at home needs me right now and that is what is the most important to me. We only have a couple of months to spend as a family and I want to make every second count. We would like to get a camping trip or two in since Ariauna will not be allowed to do things like that after the bone marrow for at least a year. We are going to try to finish a room in the basement so that we can separate the girls so when Ari comes home from bone marrow she can have her own room. So Jaxon, Ari and I headed over to Target to let them know I won't be returning to work. They were really nice and understanding about my reasons for not coming back. I saw several people and they gave me hugs and we shed a few tears. I signed the papers I had to sign and handed in my name badges and my employee card. I really am going to miss it there.  I am still going to continue doing the at home job I have been doing and can hopefully put in a little bit more time to help compensate for me not working at Target. Hopefully, financially everything will be okay. Brent and Karen came over to visit me and Ari again today, not sure what I would do without them checking in on us all of the time. I couldn't ask for better neighbors/friends. Ariauna started her home bound schooling today. Her tutor is Eve Beir and she will come on Mondays from 4-6 p.m. for the rest of the year. She will work with Ariauna and then will leave us school work to do every other day. Ariauna really enjoyed having her come and it will be good to get her back in to the routine of school. She had a tutor at the hospital that came a few times a week while we were there for short visits, but she wasn't always feeling that great. While doing the dinner dishes I felt extremely sick so I finished what I was doing and I was in bed at 8:30. Looking back now I am pretty sure it was just pure exhaustion. Tuesday morning I took Ari and Jack and we went visiting teaching. We just had one sister in the morning and then I took Sadie with me to one appointment in the evening. After we had a short little play date with Zoey. Ari wanted her to come and play but she was only here for a few hours when Ari decided she needed a nap. So we ran Zoey home, took Jaxon's birthday invitations to the post office and then came home for a nap. Wednesday was my neice Haleigh's birthday but they are not celebrating it until friday. Ariauna's friend Maeghan and her mom brought Ariauna some yummy cheesecakes and she was so excited. She was in seventh heaven, eating cheesecake. I worked from home a big chunk of the day today. My manager had a job for me that he wanted me to have done by friday, but we were going to be gone most of the day on Thursday so I had to work work work. We also ran to walmart, mask and all to get the rest of the stuff we need for Jaxon's birthday party. I am so proud of Ariauna. I thought she would really throw a fit to wear a mask in public. We have had some good talks about it and she knows if she wants to go out in public places she has to wear it. She understands the importance of her staying healthy for the bone marrow transplant. I am sure some people think I am crazy to drag her out with a mask on, but right now while her blood counts are not too low I am going to let her get some taste of the real world, because it won't be long and her blood counts will be too low to go anywhere. I want her to enjoy this last little bit of time she has to play with friends, go to primary, and shop with mom. Ariauna has been saving her money to go have a pedicure with me. Before we left the hospital she asked me if we could go do it before she has to go back. I promised her that I would take her and Sadie to get a pedicure done before we do the bone marrow. I should probably get thinking about that soon before her blood counts get too low. I also was thinking the other day, we should probably schedule to have new family photo's done. The last one we had was in Sept 2011 and Jaxon was just a baby. I was planning to do it this Christmas, but Ari won't be able to be going out. I better get them updated before she has to go through this next trial. Thursday we got up and got ready for the day and then waited for the home health nurse to come. She came shortly after 10:00 and drew her blood for her lab work and then she changed the cleave and the dressing on her PICC line.The nurse's name is Danika and she should pretty much be our nurse while we are home. She was really nice and cute with Ari.

Then grandma and grandpa came out and got Jaxon and took him to their house. Ariauna and I went on the 1st grade field trip. Ariauna missed her field trip with the 3rd grade and so Sadie's 1st grade teacher Mrs. Bressler invited Ariauna and I to go on their field trip with them. Ariauna wore a mask and we rode on the bus with all of the other kids.

We actually went to a park on the way to eat lunch and then here are the girls walking with Mrs. Bressler from the bus to Kingsbury Hall to watch the play "Diary of a worm, fly and an ant". It was a really cute play and the kids loved it. I came home long enough to change my clothes and then I left to go to a work meeting for my at home job. I actually saw the owners of the company for the first time tonight so I made sure to go up and thank them for the kind gift they gave to our family. We did get a call from the Hematology/Oncology team this afternoon (April 25, 2013) Her hematocrits were 31.2 and the normal for her would be 35-45. This is the red blood cells and she got a transfusion Saturday right before we left so hopefully it helped all of that.They usually do not transfuse on this part unless it is 20-25. Her platelets are 37 and they will let it get down to about 20 before they will do a replacement. One last thing is her ANC count which is part of the white blood cells that helps fight infection. It was down to 500 the day we left the hospital. They figure anything under 500 is scary. The new count on that was 700 which they said is amazing because the blood transfusion would not help that go up so it actually did it all on its own. Dr. Eldridge is in hopes that she will be good for another couple of weeks, but they will re-test her on Thursday again. Yay! Then Friday morning I got up and was suppose to go downstairs to work. I ended up working in between a lot of other chaos today. When I went to change the bag on Ari's feeding machine this morning, her feeding tube was clogged. Ugh! I tried and tried to do everything I could to get it unstuck. I even left Ari in charge of Jaxon for a few minutes while I ran up to the convenient store to buy a bottle of coke, because it is suppose to help break up what ever is in the tube. Nope that didn't work either. The clog is actually in the part attached to her face which made it more difficult. I tried for hours to work on it and no such luck. Finally, I called the home health nurse, unfortunately we had to wait until about 2:15 for her to come. She tried and tried and even used the emergency clean out and it still did not do anything. So about 4:00 I was calling the surgeon's office and we got the okay to come to the hospital to have a new one put in. Because her feeding tube is placed right into her intestines, they have to place it while they are x-raying her so that they can make sure it gets placed right where it should. So again, my parents came out to watch Jaxon so I could go run Ariauna, because Jerry and Austin are headed out for Scout camp right now. They took Jaxon to go get some dinner and then they went to Haleigh's birthday party. Sadie, Ariauna and I headed up to Primary's. As soon as we go there, the surgeon's nurse practitioner came in and tried to force stuff down to get it to flush to, but she couldn't either. Ariauna was not a happy camper during the procedure. They yanked the old one out and she was fine with that, but then to place the new one they did not put her out, so she could feel it going down and they kept telling her to swallow to help push it down. She actually did a phenomenal job, she cried a few times and kept telling me to make him stop, but for being awake she did good. They ended up getting it as far as they could and the radiologist thinks it will be okay, but because she is malformed on the inside there was a spot that the tube would have had to do a complete 180 to get it where it was before. He couldn't get it to make the turn. I am pretty sure that is why Dr. Soukup put the first one in during surgery.

Here is Sadie watching Ari from back behind the scenes. We came home long enough to get Jaxon from grandma and grandpa. I took the kids and we ran over to the Stark's oldest daughters wedding. It was beautiful, and it was a gorgeous day for her. They spoiled Ari with cheesecake from the refreshments and made her a to go plate of cheesecake and candies. We then tried to run by Haleighs house to say Happy Birthday but they were not home.  Saturday morning I got up and went downstairs and was down there until 12:30. I finished up the job that my manager wanted me to have done by Friday at midnight. After we spent the rest of the afternoon trying to get everything ready for Jaxon's birthday party. Jerry and Austin came home from camp and they helped us too. We had family bonding time getting things cut out and ready. The party started at 6:30 and went until dark.

 Here is our little birthday Monster!

 

                 Cookie Monster Cupcakes

                Cookie Monster goodie bags

The game Pin the eye on Cookie Monster- The kids all had fun playing this one too. Mia wouldn't play, I guess she doesn't like being blind folded and twirled. Sadie won this game and picked a kite as her prize.

Cookie Monster Cookie Toss- Jaxon absolutely loved this game. As you can see he was throwing his cookies with all of his might. Uncle Josh actually ended up winning this game, of course after a play off. The prize for this was a Ball Popzuka. The boys all had fun playing with it and shooting it at people.

 

                          Opening presents

 

Jaxon got lots of fun things for his birthday. He got this cute monkey build a bear, a cute lounge chair and table for the patio outside, bubbles, bubble blower, Mega blocks, noisy race car, this hot dog slicer, converse tennis shoes, and lots of clothes. He had a fun party!  Uncle Jeff and Aunt Jeni were one of the last one's to leave and so he took the kids for a ride. Here is Ariauna going for a ride on his Harley.

Today we went to church as a family again. Holly Taylor in our ward had to speak in Sacrament meeting today on the Ministering of Angels and asked me to write down some of my thoughts and feelings about what we have been going through lately. It was hard to write it all down and express on paper, my true feelings. Anyway, she did a great job with her talk. Then our lesson in Relief Society today was on having trials of faith. Just what I needed to hear.  It was kind of a teary day in church. The talks, the lessons, the songs kept me teary all day. After church we spent the day trying to reorganize the upstairs, trying to start preparing for some construction. The Stark's brought by a bunch of cheesecake and candies left over from the wedding for Ariauna. That totally made her day!  The kids played outback for awhile and then Ari and Austin took Jaxon on a bike ride and Sadie went for a walk with the Kings.  It has been a crazy week. Let's hope this week calms down a little bit more. Actually it will probably be a bit crazy too, because Ari is going to try to go back to school a bit for speech and reading groups.So I will be running her each day to the school in the afternoons. If her blood counts get too low, she won't be able to do that either, so hopefully she enjoys it while she can. We shall see how it all goes, wish me luck for a calmer week this week! I will check in again soon!