Wednesday, April 10, 2013

for chase, part xi + pictures + 2013 shore walk/run

today was chase's first full day back in minnesota, and he was reunited with ava and tanner. that is awesome. chaser had a good day, lots of time breathing on his own and getting the nutrients he needs. i am so thankful that he had a good day. we are going to need to keep sending a ton of good prayers and thoughts to chase and chris, lisa, ava, and tanner as this new chapter unfolds for all of them. but we are good at sending the needed vibes, right? right. so onward we go as onward they go.

here are the latest updates on chaser:
+++ rekindled spirit - "Chaser had a good night! We all got some well needed rest. His vitals remain great, his breathing sounds much better, and we did not have to do many deep suctioning last night- it appears the secretions from his lungs have slowed down- we are hoping he is / or will begining to swallow soon- He is still managing to fill diapers with the aid of the laxative we have been giving him. We are going to take him off it and let him make a mess of his diapers on his own. We just completed another ACS - or Vest treatment, he seemed very relaxed throughout the session. I was able to work in a little PT and move his arms and legs to give him some exercise. Prior to the vest treatment when he filled his diaper, and he was quite agitated. As Lisa and I picked him up to clean the bed, with his face to my chest, he let out a sigh.............and completely relaxed. Our little fighter knows we are here with him, and we are all ready to rumble! It was so refreshing for both of us to hold Tanner and Ava last night. It did bring out some of the fears and feelings we both have kept surpressed for this entire journey....but it did re-energize us, and re-emphasize to us, that we have no choice but to keep positive and push forward- which we both need. We appreicate all of your support and prayers, the definately helped me turn my mind around this morning. We are rested, positive, trusting in the Lord, and ready to tackle today."
+++ "Wow, was it great to have the family back together again! Tanner and Ava were able to hang out with their little brother today for the first time since the accident. We had a child specialist from the hospital help mom and I with a breif education and question session prior to seeing Chase. It went well. It is a hard for their little minds to grasp many of the concepts involved with a situation like this, but after a few hours of emotions, we came with a game plan to work towards. As a family, we are going to work hard, keep thinking postive and trust God, that Chase will be stable enough to get him home - where we can work on his PT and smother him with Love! ...Chaser had a good day. His vitals remain good. His lungs are still strong and have been off oxygen assistance since 10am. Back to breathing on his own! He has been keeping his feeds down- so the Dr. has decided to up the level to 60ml/hr. He is burning a lot of calories with his frequent Neuro-Storms, and all of the body movements assoctiated with them. The outbursts are increasing in frequency and seem to be intensifying in their nature. We have increased his meds, and added a few to the cocktail. Hopefully this will tame them. Chase continues to show his fighting spirit, as he opened his eyes while he was given a suction treatment. He was mad! He continues to be more tolerant of the vest treatments, and almost appears to relax during them. We have been introduced to many of the staff in the various areas of the hospital, and we are confident we are in the right place. Mom and I are begining to accept what has happened and are starting to discuss the future and what it may bring. We are ready to start the various levels of therapy with Chaser, and look forward to seeing more of Gods miracles unfold infront of our very eyes!"

i am sticking to the promise i made myself to keep current with our pictures this year, and it feels damn good. are there still tough moments? you bet. but there are far more moments of joy and a little peace. i am so happy that our lives for this year are documented. tackling pictures is definitely one of the bravest and best things that i have done this year. hands down. the moment today when malena spent time going through all of the pictures was magic. it was like a little fairy dust had been sprinkled on my day.

if you love broccoli, you should make what i ate for dinner. broccoli mixed with olive oil, kosher salt, and pepper. roast it on 425 degrees for about 20-25 minutes (thanks hooch). so good. my green smoothie tonight (kale, spinach, cucumber, apple) also rocked (i had already drank half of it down by the time i took this picture), i think that i am pretty much becoming a green smoothie master;) yum.

i created a team for the 2013 shore run/walk today to benefit fred hutchinson cancer research. our team name is "alli's angels" and you can register here. i am doing the 5k walk again this year but runners are welcome. if you would like to be on the team, or to donate to cancer research, or to send us good thoughts while we walk/run, or all three of the above - we would love it! for those of you that are going to join the team, if you join by april 30th you get the reduced rate. the walk is on sunday, june 9th. this will be our third annual walk. go team!

i was telling my friend mary tonight that i thought about starting a melanoma walk in seattle this year as there aren't any currently scheduled. i don't have the drive to take on something like that right now. the other and even more significant reason is that on many days i don't want to spend anymore of my time thinking about melanoma than i already have to. there are times that i feel guilty about that. i could do more to educate others, i could read all of the blogs, i could raise more funds, i could just do more in general to boost the knowledge about melanoma. but i have to remember that i am doing the best that i can and i have to know that is enough. this week i got a card from my friend crystal who teaches high school and she had her kids watch the "dear 16 year old me" video which i have posted on this blog a couple of times now (watching it is a kleenex moment for me every single time). she had the kids watch it as they get ready for prom season. here are some of the things that crystal heard from her students after the video, "thank you for teaching us something that matters in our life", "i bought 3 bottles of sunscreen yesterday to keep in my car, purse, and home," " i got new sunglasses that are uva/uvb protected", "i went to go tanning last night but got a spray tan package instead." it was a good reminder to me that being brave, continuing to fight each and every day, and sharing my story with you is enough. it is just enough (thank you jilbert for the reminder - love you).

so i have made my first goal for 2014, which will be to start a melanoma walk in seattle. making my first goal for 2014 is a big deal. i get nervous scheduling lunch appointments for next week these days because the future seems so scary. scheduling anything past my scans this month causes me a lot of anxiety because i do not like making plans that i don't know i can keep. that was the exact reason i didn't make many plans during the year i was on interferon and felt like hell, i never knew if i would feed good enough (which was relative during that entire year) to follow through with anything. i am making plans past april 30th, but taking numerous deep breaths after the plans are made.

so is a little heads-up, i have my first goal on the list....

....and you know me, i love checking things off my to do lists.

1 comment:

  1. Awesome. Alli. Awesome! 2014 better watch out because you are coming for her something fierce! Let me know if there is anything I can do to help!