Wednesday, May 8, 2013

chaser + heroes + helpers

one of the last times that we were at gymnastics for malena, there was a huge captain america balloon in the lobby. no clue why, i didn't ask, it didn't matter. i just took it as a sign from chase that he was having a good day and was fighting hard in minnesota.

i usually write a note to chase each night on his caringbridge journal when i get done writing my blog update. he is always on my mind, but even more so after i finish a blog post since i typically share the latest update on how he is doing. last night i told him in my note that i would look when i walked into gymnastics to see if the balloon was still there.

when we walked in, i could see immediately that the balloon was gone. i was kind of bummed because i love seeing captain america things (and kind of go out of my way to look for them now) because i think it brings good mojo for chase. after i walked in, i saw a huge stack of these drawings on the front desk.
i know he doesn't have the captain america symbol on his chest, but i am pretty sure that this little superhero drawing was another sign that chase is fighting hard in minnesota. again, why they would have a ton of copies of this handout in the lobby of gymnastics is totally random. i have never seen them before. like the balloon, no clue why, i didn't ask, it didn't matter.

i got some fun mail today, "wisdom from the world according to mister rogers" from a new friend named dane. when i opened it up, i picked a page in the middle of the book and it had this quote on it...

"when i was very young, most of my childhood heroes wore capes, flew through the air, or picked up buildings with one arm. they were spectacular and got a lot of attention. but as i grew, my heroes changed, so that now i can honestly say that anyone who does anything to help a child is a hero to me."

i also think that turning to that exact page in the book was a bit of a sign as well. so tonight i have heroes heavy on my brain. chase is without a doubt a hero to me, and i know that he will keep fighting. i also know that he has had a tremendous support group from all over sending him good vibes and prayers, and doing what they can to help in any way possible. they too are heroes, including all of you that have signed up for the fun mail for chase, ava, and tanner campaign (we are into week three - and we now have enough people signed up to send mail to the kids every single week of this year!!!! so awesome). everyone who has helped chase and his family makes me think of another one of my favorite mr. rogers quotes,

"when i was a boy and i would see scary things in the news, my mother would say to me, 'look for the helpers. you will always find people who are helping'. to this day, especially in times of "disaster", i remember my mother's words, and i am always comforted by realizing that there are still so many helpers - so many caring people in the world."

i have had a pretty rough time sleeping in the last couple of weeks, i think due my brain overloading on all of the things that i want to do and accomplish in the next three months before my next scans roll around (ugh). so i have felt like i am dragging during the days because my brain won't shut down until way past the time it should in order to give me some good rest each night.  but i think that tonight i will rest a little easier thinking about heroes and helpers, and that chase sent us a sign today that he is continuing to fight his fight.

here is the latest update on chase:
"Chaser lays peacefully on his tummy. The left side of his little chapped face resting on the bedsheet, while his neck bends softly, stretched across the end of the pillow. His twisted little feet are perched up on another pillow, with most of his toes comfortably curled in, the others pointing up to the ceiling. His heartrate has calmed down to that of an adult engaging in a strenuous activity- but now seems to be his level while at a state of rest. I have been trying since 6 oclock to find time to write this journal, but unfortuantely, in one way or another, have been focused on finding comfort for Chase, and getting him to a point of relaxation. Chasers evening last night was a prettty active one for him and mom. He remained tense for most of the night, and had a storm around 1am. He awoke to another, more intense N-storm around 6. The nurses had to resort to using all of the methods prescribed to counter it. Usually these storms are calmed during the first counter active med they give him, but not this time. His day at Therapy was not very productive, as he remained agitated with his muscles clenched, and heart rate fairly high most of the day. He did manage to bring some smiles, as he reacted positively to the smell of lemon and orange today- and squeezed in a couple of swallows! Chasers personal stylist, Cari, made a house call to the hospital room and trimmed up his hair to get that little boy look back. :) We met with the various members of the staff today, for our bi-weekly interactive meeting. We had some very good discussions on his condition, progress, and ideas to further his progress. The Therapists did agree with mom and I, that he seems to be responding to voices, and moving his eyes in the direction of them. Although, it is not as often as we would like, nor does there seem to be any consistency, they can "feel" him as well we do! The staff seems very receptive to our input, and all of them, have grown an attachment to Chase, and no doubt, have nothing but his best intentions in mind- That was reassuring to see and hear! I suggested that we try pool therapy, since he is such a fan of tubby time. They are going to try a couple and see how it goes. The overall concensus of the meeting, was his tight muscle tone. It is very clear that this is the number one obstical we are facing right now. I am praying we figure this out, and soon. Mom and I both feel that a large cause of his tight tone is the ulser. He is moaning much more, and although it is nice to hear his voice, this is not a pleasent noise to hear. His face seems to be in a constant aganizing snare, wihich reinforces our theory that he is in pain. With the med patch now off of him, we have increased one of the muscle relaxing drugs to try avoid the storms. We have added a couple of stomach meds to his cocktail to combat the ulser. I have made it a point to try and keep my journals centered around the positives, but some days, it just is what it is. Mom and I are still very pleased with the progress Chase has made, and continues to make- but for now, it appears that our primary focus, once again, needs to be on eliminating the pain our little guy is dealing with, so he can be more interactive in therapy. With this day almost behind us, we look forward to a fresh start tomorrow, and more positive signs. Have a good night. God is Good!"

goodnight, and sweet dreams - especially to chase, may he rest well tonight. xo

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