Bath Robe and the Movies

So yesterday Hatcher was having a pretty good day so Grandma Vauna babysat so Randy and I could go on a date .  A date ... what is that?  It is so hard to leave this little guy, not to mention he is not the easiest kiddo to watch ... a little stressful, thank goodness for grams!  Anyway we had to run to the pharmacy and do some errands and kinda on a whim we drove by the movies, called grandma (all was well), so we decided to grab some bread sticks at Kmart (glamours I know) and go to Battleship.  While at Kmart I told Randy I was not prepared for a movie (I'm always cold, even in 90 degree weather if AC is involved).  So I thought I would just grab a sweatshirt.  Of courses there is not sweatshirts in July in the entire store, so I ended up with a bright pink polka dot bath robe (which I really did need).  I shoved it in my purse and stayed cozy, head on Randy's shoulder the entire movie!  It is so weird to go do normal things.  I couldn't help but sit there and think how the world just goes on. I felt rejuvenated when I got home and had energy for Hatcher's needs again.  I had to take this picture before bed because Hatcher was so happy just to be in the middle of us as usual.  He loves that our bed is his bed and always tries to get Randy's pillow before Randy can get in bed.  I'm thankful for this smile because it was one long night!  The loud oxygen machine that purrs, towel, and bowl that accompanie us every night is kinda funny when I think about it.  I bet I change my sheets more than anyone!  When those cast get stuck he coughs so much he throws up all the time.  We gave him his lasics too late and laying on top of Randy wet the bed, or should I say wet Randy!  We laughed at the scene ... and for some reason this makes me more in love with Randy than ever!  Loving this little boy (and Jax of course) more than anything makes us close.  I love looking over at this sick little boy on this strong man's chest, trying to make him feel safe when just breathing is hard.  I hate nights ... I'm up too much with Hatcher and have too much time to think, but last night I didn't mind it and smiled at the thought of me in my robe at the movies on a date!  I think blogging is like cheap therapy, makes me feel good to recognize all the good things in life! 

Oh boy, this update is so long overdue! Sorry to all of my avid blog followers…. Life with Hatcher has left me with little energy or spare time! What a roller coaster ride the last 6 weeks have been! Here is my attempt at a quick recap!
We headed to Stanford May 25th to meet with the transplant team at LPCH and to do some testing for the Hatch man. We went prayerfully hoping we would know exactly what to do. I should note Hatcher has struggled with casts more than we have ever seen. Heparin rescues in the hospital, extra TPA, treatments, ect … we were feeling like we were running out of time! Plastic bronchitis has consumed our everyday. After much conversation and plenty of tears, it was decided by the team and Randy and I that we would not proceed with transplant. I was more emotional than I had anticipated, I guess deep in my gut I was hoping for one more thing….something that I knew would not be glamorous but something that would hopefully give us more time. Hatcher’s Plastic Bronchitis is so sever the chances of surviving just the surgery would take yet another miracle! With such little known about the disease it is hard to guess the outcome, but based on all the team could put together we knew it was not right. I could write a whole entry just on our trip, but I will keep it short. Both Randy and I felt the spirit so strong…. Although we do not want Hatcher to die, we also do not want to put him through anything else unless it would give him quality of life. On the way to the airport to go back home Hatcher asked from the back seat, “Am I dying?” Holding back the tears we explained that we all die, some when they are young, some in-between and some when they are old. His response, “OK.” He has these moments when the windows of heaven open and he says the most touching things. Then in the next sentence he could be talking about farts (yes, anything about pooping, farting or butts is so funny to him). As you can imagine the flight and drive home was somewhat melancholy. We are also so thankful for the world’s best pediatrician Dr. Mcinturff! Also for the help from PCMC … what a team effort this has been. We have meet with the Rainbow team from Primary’s. They specialize in palliative care, basically how to help us in helping Hatcher if he is to pass away, make him comfortable and help to give us guidance. What a neat team they are and we are grateful for their help. In-depth conversations about do not resuscitate orders…. And our wishes for Hatcher. We will not be doing any procedures that would require a breathing tube …. And for the most part we know at this point there is very little that can be done medically for Hatcher. Deep breath…. This is what I try to do. I have cried more in the last month than I think I have the entire year. I am somewhat shocked he is still with us. Watching your child basically suffocate to death has to be one of the most horrifying things I can describe. There has been so many times Randy and I think it is the end, and low and behold somehow he musters up enough strength to get out a huge cast (or 10) and then morning comes or the hours pass and we get moments of Hatcher again! The crazy thing about this disease is that in one moment he is living, looking normal and the next I am wondering if today will be the day. Jaxyn has handled herself so well as usual but we have seen her worry more than ever. One night Randy took her in his arms and asked her how she was doing with all of this. She sat there a moment and then broke down, tears and more tears. Probably one of the hardest moments for me thus far. She so sweetly told us how she had been thinking about Christmas morning without Hatcher, movies on the couch by herself and no one to hold or read to. She said she knew Hathcer would be OK, but it would just be hard to be happy and not board without him. She is so much more than a sister, I tease her she won’t be able to go back to school this fall because I love her help and company. Tonight I was picking up while Randy was putting the kids to bed. Once again I put Hatchers cowboy boots away. Every time I do that I wonder if it will be the last time. It is the craziest roller coaster. With all that being said life goes on. Jaxyn turned 9, finished up school, stared rodeo and jumps at every chance she gets to go swimming. I snuck away to Oregon to see my sister, so wonderful (thanks mom and dad for being there too). Randy has been able to be home more helping with Hatcher and working from home when he needs to, what a blessing! And the summer is flying by! Over a week ago we meet with a Nature Path …. So inspired (a friend had referred us, so grateful) and the last week has been so much better. We were even able to go to Rexburg for a state track meet Jaxyn qualified for and stayed in a hotel! Hatcher did well and even has been without his oxygen on and off. I feel like he is enjoying life once again. So fingers and toes crossed that our no dairy, no sugar, no fat, supplement diet is helping his body and we will get some more time with our sweet little cowboy! We continued to be amazed at the love and support we feel daily. We are so lucky …. So blessed …. And would not be the same without this experience. As many of you know Hatcher has received Make a Wish. Highland High helped to make Hatchers wish come true. We are heading to Disney World in October (yes, he better behave himself till then!) A key student in Hatcher’s wish was Timmie Bowie. I have to say the first time I meet her I came home and told Randy how impressed I was. It may sound cheesy but I felt a connection with her the very first time I meet her. She now faces her own battle. Not sure if I Will have time to link it on mine tonight … www.timmiesjourney.blogspot.com. She is at Primary Children’s and I can’t get this beautiful girl with a contagious smile off of my mind. I know the Lord puts people in our path for a reason. If you can believe it she and Hatcher had rooms next to each other in the hospital recently… We know she will get the miracle she and her family deserve. So let’s add Timmie to our prayers, she has touched our family forever! I will post some pictures….some from months ago and here my camera sits on the desk with hundreds more to download ….one day I will catch up! As I reflect on the past few weeks I am so thankful for the Lords tender mercies. Hatcher was able to enjoy Wheatley cousin camp! Has pulled ribbons off goats tails at the rodeo, and even the days and nights he does not feel good we cherish just holding him. I am thankful for the mom this disease forces me to be….. KEEP ON…..SMILE….and LAUGH!

So blogger has updated and I'm trying to figure it out!  I guess the pictures load random....so not in order but non the less here they are!