Sunday, March 2, 2014

goodbye weekend, hello work week

oh weekend, you were a good one and i miss you already.

as expected, highlights included:

+++ friday morning starbucks date with my favorite girl. yes, that breakfast included a rice krispie treat and chocolate milk. yes, she gets to make her own choice for breakfast. yes, i know it isn't the breakfast of champions. yes, i know that she will have these pictures and memories to remember that every friday we had a special date - just the two of us. yes, she will remember that those were the mornings when rice krispie treats and chocolate milk and time with her mom made her happy. yes, just yes.

+++ got to catch up with my good friends mike and joel, and their lovely wives jenn and laura. i also got to teach them some lessons in how to play shuffleboard (aka i was the champion, but i don't want to rub it in since i know that they are reading this and i don't want to see them in tears. again). i didn't even charge them for the lesson. how nice of me is that? these guys are two of my most favorite people that i have ever worked with. hands down. if i could have worked next to them every day in my career, i would have been a happy girl.
this is an action shot of how to play shuffleboard. yes, sticking my tongue out when i push the puck definitely helps my game. big time. you are welcome for the tip (josh -- you would have gone down in flames as well my friend...just sayin').

+++ we celebrated beth's birthday and got to meet some of the people that are important in her life. a very nice night to celebrate a great girl.
+++ we ate chocolate.

+++ we opened up our kiwi crate and spent a couple of hours playing a very cool game that taught malena about the continents and important places in the world. we got to travel the world without every leaving our kitchen. very fun. i love it when that green box shows up in our mailbox.
+++ we had malena's first play date at our house, and had fun watching her three friends play, paint, and decorate cupcakes. i wish that i could tap into the energy level of those four 5 year olds, i think that i would have energy to make it through the year.
+++ i am working hard on taking the time needed to really take good care of myself. that includes taking time to cut up fruits and veggies to eat in every meal of the day. trying to get more sleep. reclaiming my fridays off from work (this last one hopefully being an exception since i was in the office). taking deep breaths and remembering to slow down. today i got about an hour and a half of some solo down time. i thought briefly about reaching for my work bag and knocking out one of the big deadlines i have coming up this week. but instead, i took some deep breaths and focused on what i needed to do to take care of myself. so i made some green tea. i hung out in my craft room. i lit a candle. i printed off our pictures from the last two weeks. i spent my time putting our pictures into our album, documenting our lives, and spending that time in the best way i could have. that was definitely the right decision. one decision at a time.
+++ i came across ann-marie's podcast list and am thinking that i need to check out some of these. have never listened to a podcast before, pretty sure that needs to be on my to do list.
+++ i loved the idea in nicole reaves post of using a hanger to display a print...might just need to try that one out.
+++ i spent some time drooling over the new spring collection at mulberry press co. i am such a sucker for cool prints.
+++ we were super glad to hear the update on chaser:

Our Warriors Kindred Spirit! 

Chasers Little body may be overshadowed by this Auguste Rondin's 7 foot sculpture at Mayo, but his spirit soars well above it! He has been nothing short of amazing this entire week for the tests, the 5am wake-up calls, the 2hrs drive each way, sitting in his wheel chair for hours, the two nights without feedings ect...ect.. No crying, no moaning, hardly even a hic-up came from his chapped lips while we were down there. We have just had our final review recap with one of the nurses on the Aero team and are headed back home. Chaser is in back with his with Captain America headphones on, jammin to some tunes, Lisa has her hands at 10 and 2, white knuckled -glowing from ear to ear I might add- as I am filling in the blanks for you guys- and wishing I was driving! :)

Yesterday morning Chaser had a bowel emptying study (to see how fast he is digesting his food, and to make sure his digestive tract is working good) and we met with the Dietician (to discuss his current formula intake, and come up with a better plan for feeding) This morning he had an EEG-- (to look for any signs of Seizure activity), then met with Cathy from OT (followup on his swallowing and muscle spasticity) - and then we had a recap with results of all the tests. And here is what we found:

In regards to the vomiting and stomach pain- His samples came back normal. The sample taken from his stomach showed a slight elevation in bacteria in his stomach. Nothing to be concerned with, but could potentially be causing the vomiting- we are going to try an antibiotic for a week to see if that helps. We have also added Miralax to his daily cocktail- to try and relieve these pains.

The Hormonal-Prepuberty tests- His hand x-ray came back completely in the norm of that of a 5 year old. His blood work was normal as well! He is NOT experiencing early puberty!

The EEG test- His EEG test came back good! There were NO signs of any seizures or seizure-like activity! The neurologist was also pleased that he showed a definite sleep pattern- (Chaser took a little rester while being in the room hooked up to all those wires.....must have been the classical music that zonked him!) He also said that if he were to compare this EEG test with that of the one taken back in July at Gillette's, he would certainly find a BIG improvement!

The Bowel Emptying Study. These results really got us pumped- they showed that Chaser is digesting almost 25% faster than he did when we did this study back in Sept! This is good info, so now we can plan his feedings better and know when he is full. Lisa says she will leave the math up to me :)

-His muscle spasticity- the neurologist has decided to put him back on a low dosage of valium- not for pain control, but to help with muscle tone. Lisa and Chaser are back on Monday to meet with a doctor to discuss Botox and Phenol in his arms and legs to help loosen him up.

All in all- this was an AWESOME visit! Once again, two steps forward, no steps back! We are leaving here with more in site and more tools to keep Chaser on track for a full recovery-Lord willing! Thank you all for you prayers and support. Have a great weekend!

God is Good!"
+++ we loved watching the oscars and ate some popcorn to celebrate. my favorite part being some of the amazing speeches. i don't think that i will ever forget matthew's words, "we all need someone to look up to, something to look forward to, and someone to chase."
+++ was super excited that my mason jar tumbler came, i will be using it to drink my smoothies every morning while i am driving to work.
+++ the weekend is ending with one extra campout night, because why not? sometimes sunday nights need a little fun, a little early mojo to start the week off right.
here we go again peeps, make it a good one. xo



  1. You might love listening to podcasts on your commute! I do that and listen to audio books :)

  2. Psst: Busted! Bring that weak game of shuffle puck to the Harbor.