Monday, April 22, 2013

big day

today was a big day at our house.

malena is student of the week at her school this week. big deal:)

as part of that, she gets to take a poster with pictures and tell her class all about them.

we worked on the board yesterday, it was so fun to put it together with her. she wanted to stencil the letters on herself (i can just do this all by myself momma).

putting together the board for her made me think ahead to all of the projects that she will do in school, the art projects, the science fair projects, the social studies projects, etc. bittersweet moment for me for sure, but i just took it all in and was so happy to be in that specific moment with her. a milestone event for us. you know i love those.
we started today with a chocolate donut with sprinkles to celebrate her big week. what day doesn't start out great if you are eating a chocolate donut with sprinkles? exactly. they all do.

she got to put her picture board up at school in the main part of the school so that everyone sees it when they come in and leave school. very exciting for her;)
how did my little girl get to be so big? i wonder that every single day as i see the new things that she tackles and how she amazes me each day. i found this piece of art this weekend and knew the second i saw it that it belonged in her room. i want her to be reminded that she can and will move mountains, and on the days when she might not remember that for herself, she can know that her mom believes in her wholeheartedly.
keep sending your good thoughts and prayers to chase that his n-storms will start to slow down in frequency. here are the latest updates from today:
+++ "Chase has given me the best present ever, a full night sleep :) He had a great night with no interuption. Except for his vest treatment and of course his medications. He slept so good, as Chase was sleeping I laid there and watched him sleep peacefully. Like any mom you lay there and stare at your baby. Thoughts that went through my mind were: look at those eye lashes, I can't even imagine loving something more than children, is he going to wake up and ask for some propel, and how did this happen??? I don't know, all I know is, it did and we will get through this. The love, support, and prayers are undescribable. Overwhelming at times, but in a good way. Last nights prayer session was a eye opener. It made me dig down deep into my heart and really ask God for forgiveness and for strength. He will provide, I just know it!!! Chase is one demanding and stubborn child, with a kind and young heart. One day at a time and baby steps. Off to a full day of PT with only a 1/2 hour break at noon. Hopefully it goes well."

+++ "Chasers Neuro-Storms seem to be following the same pattern as this crummy MN winter- unpredictable, and never ending! I think Chase got his hero Captain America with GI Joe mixed up today- He and mom started the day bright and early at the crack of dawn, and he managed to stay awake until late afternoon. Although their night was very peaceful, and consisted of a good, much needed reenergizing rest, Chase proceeded to burn all of his built up energy fighting the Neuro-Storms most of the day. He had struggled through four therapy sessions while remaining in a tense and agitated state. He did show his show some his strength and took at least 6 swallows on his own! During his physical Therapy, he made one big swallow that excited his therapist because she could actually hear it happening! Mom and I had a good meeting with the neurologist and Dr. to discuss Chases current state and alter the plan of attack on these Neuro-Storms. We have always been confident that Gillett's hospital was one of the best of its kind in dealing with Rehab and therapy for a child in Chases condition, but now we are comfortable with the medical side as well. We have made some changes to his cocktail of meds, altered dosages, and added a med to dry up his secretions. He seems to be tolerating all of the changes well- The Dr reiterated to us again, that with many patients they are unable to find meds that are effective in treating, or even help calm these N-Storms- making Chase a good exception.. As frustrating as it has been to try and deal with, prevent and react appropriately to these storms, we feel fortunate that they are not as frequent and violent as they could be given his condition. Although the day had many ups and downs, we continue to be encouraged by the immediate and blatant answer to prayers that we are receiving. We both understand we are Gods schedule in this fight, and we are trying to be as patient as humanly possible. Chase continues to snore behind me as I try to put into words the days events. We thank you all for your continued support- and are looking forward to tomorrows bright reflection from the new blanket of snow outside to shine in our room with more hope."

today as i headed home i needed to make a quick stop at the grocery store (josh - just so you are clear, i had to stop at safeway's;) haha! love you). when i got into the checker line, i had a small basket full to the brim. the woman in front of me had a full cart, but all of the lines were busy so i picked one and was ready to wait my turn. she turned around and told me to go in front of her because i had less than she did. i said "are you sure? my basket is totally full?" and she said "you know, i think that if we all do nice things when we can we will collectively make this world a better place."

i couldn't agree more.

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