Sunday, June 30, 2013

hello july + patty + chase

long time, no write.

it feels good to be back in this space. i have missed writing, so it feels good to have my fingers back on the keyboard.

we spent the greater portion of this last week in california at disneyland.

we had an awesome time. it was all i hoped for and more. more to come on that trip as well as the retreat.

this last week and a half have been exactly what i needed. time to catch my breath. it feels good to be breathing again, i really needed the break. the weeks leading into vacation were hectic and had me out of my new routine so i felt completely out of balance. i am looking forward to maintaining the balance again with work beginning tomorrow.

i can't believe that it is july tomorrow, here is a list of the things that i am focusing on for july:
+++ taking this class which i am really excited about as i know that it will get me to take more pictures in july than i would have otherwise. plus, i am sure that i will learn some cool tricks and apps as well. very fun.
+++ spending time outside each and every day, likely doing more sidewalk chalk art like malena and i did as a way to end our day today.

+++ flossing (don't tell my dentist, but june found me and floss parting ways and we need to reunite)
+++ making a ton of green smoothies
+++ trying some new recipes.

+++ jumping. i got a new trampoline because my nutrionist told me that the jumping motion can help to balance lymph nodes. so i am going to jump for a couple of minutes every day. look out lymph nodes, i am coming after you.
+++ continuing to document our life with pictures. i already have the pictures from our trip to disneyland in to the printer, so i will have those pictures in an album this week. i also got all of our pictures from 2012 printed so i am going to start that new album this month as well. proud of myself for working through my issues with pictures, loving how the albums are turning out.
+++ being ok with just doing a little each day. spending time in the yard keeping ahead of weeds. catching up on emails (if you have sent me one and haven't heard back, i got it - i appreciate it, and you will hear back from me. xo). making thank you cards (if you have sent me mail or done some other awesome thing for me, i got it - i appreciate it, and you will hear back from me. xo). a little progress each day, that is the goal, and that is going to be ok. being in progress versus being all caught up is a hard shift for me but i am working on it.
+++ being in bed by 10 (good thing tonight isn't july 1st or i would already be breaking this one). i have fell into an old/bad routine of not going to bed until late (aka 11pm or later), which doesn't help me or my body to feel rested. lights out. 10pm. no matter what.
+++ turning 38. more on that to come.
+++ spending time with family, including the sheehan clan in minnesota - kevin, you get the first hug (as long as no one is trying to throw water balloons at you;))

+++ doing a clean sweep of our house. if i don't love it, or we don't need it, it is going to the garage sale in august

+++ reading.
+++ spending time on my dream couch each day.

i am looking forward to july, it will be full of a ton of good things - including good scan results at the end of the month. right? right. glad we continue to agree on that.

i also want to ask for good thoughts for patty, her scans in the last week showed that her tumor is growing despite the chemotherapy she has been doing for the last 14 months. she will begin radiation therapy that may also be supplemented with additional chemotherapy.  her radiation therapy is scheduled to begin on july 8th and will last for approximately 6 weeks. please send your good vibes, mojo, and prayers to patty and her family as she takes on this new development in her fight. i know that tumor doesn't stand a chance with all of your good mojo, so i am sure that it is already shrinking as i type this.

i also wanted to give the last couple of updates on chase, as your good thoughts, mojo, and prayers are needed for him as well. here are the latest updates on our little warrior:
+++ Chaser had a great night with Gramma Judy last night. He slept through the night. His formula was shut off at 4am in preparation of his Mik-ey Tube insertion and his scope. Well, I received a call at 9:30am from one of his doctors apologizing and informing me that we can not do both procedures at the same time. I was a little upset, to say the least. We planned this over a week ago, and to find out hours before that it wasn't possible was very disturbing. Not only had we had him off his formula for hours, but I didn't understand why this hadn't been addressed and sorted out prior to the day of. So I called and expressed my aggravation with another doctor on staff. That doctor then arranged to have another surgeon to do the procedure at the scheduled time. While sitting in the prep room waiting for 2 o'clock to roll around, we met the various members of the surgical team. The surgeon began asking us questions about Chase and his history, and it became very clear that there was a major communication breakdown. She explained that she did not feel comfortable putting in the Mik-ey tube earlier than 3 months after the G-Tube placement- due to potential problems with the stomach, and possible damage that could occur. So once again, plans have changed. We decided not to do the scope of his stomach, because the surgeon did not feel that it was worth taking the risk just to see the inside. We had a good talk with the doctors on staff, expressed our frustration, and revised our game plan. As far as the Mik-ey goes, we are going to discuss in a couple weeks. The scope we are putting off until the Mik-ey surgery, unless the GI doctor feels he needs it sooner. We have switched formulas to a formula that is thinner, and hopefully he digests it easier. We are going to start bolus feeds in small amounts. Chaser just had a 30ml dose of formula, and is doing good. He is going to get another 30ml every half-hour as long as he tolerates it. Mom and I looking forward to putting this day behind us, ordering some pizza and hanging out with little dude tonight. Lisa's smile is still lighting up the room even after the crummy afternoon we had :) Have a great night. God is Good!
+++ Apparently all of the stress of yesterday wore little Chase out. He feel asleep last night around midnight and has been in and out of sleep since. After our journal yesterday, Chasers day went from bad to worse. We decided to try bolus feeding him with the new formula at 4 oclock to get some food in his stomach. After 2hrs with 60ml given to him, his nurse checked how much was left in his stomach. It turns out that most of it was still in there, meaning he had digested none. We suggested we go back to the old formula and deal with his vomiting issue after he had a good run of formula in his stomach. He may been bringing it up, but atleast he was able to digest some of it. Fortunately, our gut was right. Pardon the pun :) He tolerated 60ml an hour until noon today- then we switched back to the lighter formula. He spent most of the night crying and was clearly very uncomfortable. He has had a couple dipers with some unknown discharge in them, so we asked if they would take a sample and test to see if Chase had an infection or a UTI. The lab results showed some slightly elevated white blood cells, which means that something isnt right. So they put him on an antibotic last night, and ordered a culture. Hopefully the results come back with answers. This could possibly be the reason for his discomfort. Mom was in therapy with him alll day. He slept through all of it, making the therpists and mom burst out in laughter as he snored during pool therapy! I think a full day of rest is good for Chaser, man what I wouldn't give too have a day that I could sleep through! Gramma Judy switched places with Lisa so we could have a night at home with the other two. We took them and Tanners buddy Ben to Valley Fair to get our guts turning- after riding on Renagade, I think I know how Chaser feels. Judy just called with a nightly report - very excited. She said she saw the sheets moving, pulled them back, and Chaser was moving his feet and toes!! He has moved them before, but it was a reaction to being tickled or curling them in discomfort- but never just for the heck of it. Go Chase! The nurse just did another check on how much food was in his stomach and found NOTHING..he is digesting everything. We are both ending this night with a Big smile on our face. We are looking forward to our day and overnight pass tomorrow with Chase. Have a great night. I know we will. God is Good!
+++ As I am cleaning up the house and packing up Chase's stuff to go back to the hospital, I realize that reality is kicking back in. Returning to our home away from home. Chase is due back before 8:00 pm for his nightly dose of meds. We are still scheduled to be discharged on the 5th but I really don't foresee that happening, especially with this week being a holiday week. I think it might be the following friday the 12th. But that is okay, don't get me wrong I would love to be out of there this week but having another week would mean more therapy, more playing around with meds and still trying to figure out the formula and throwing up issue. Chase's overnight pass went fairly well last night. We got to enjoy Tanner's year end hockey party which was at a pool so the kids swam and the adults played bean bags. The moms took turns holding Chase for the 2 hours that we were there. I don't know who enjoyed it more Chase or the moms. After the party we went home and enjoyed our traditional walk around the block. Not sure if it is for the socializing or if it is for the excerise. I think a little of both. Chase was so tired that he fell asleep right after the walk. He enjoyed sleeping in his new room. We still need to do a couple more things to it but it is turning out quite nicely. It has the Captain America theme of course!! I slept right next to him on a air matress while Chris, Tanner and Ava were in the TV room. We couldnt all fit in Chase"s room so we thought that was the best scenerio. Chase was up a couple of times with some good solid coughs. He had swallowed everything he had tried to bring up which is very good. Yesterday we tired the bolus feeds and so far so good. His tummy has been tolerating it. Today he has had a few episodes of throwing up but overall not bad. We are so proud of him. He is working so hard. Tomorrow is another new day and more experimenting with the bolus feeds. I hope everyone enjoyed their weekend as much as we did. Off to the hospital...."

thanks again to everyone who is participating in the fun mail for chase, ava, and tanner - the fun mail keeps going to them every week which is so awesome.

happy july everyone, i hope that your month gets off to a great start. xo


  1. I'm so glad Disney was everything you hoped it would be!!!! Welcome back to the blog too- missed you for a week! :)

  2. Hooray for an awesome Disney adventure. Hooray for jumping and awesome pics to prove it. Hooray for the return of routine. Have an awesome week!