Wrapping up the Week

This week was insanely busy and I am looking forward to laying low this weekend.  The boys and I hit labs early Thursday morning and after only two pokes we got a lot of blood.  I sent Owen's Antibody labs via FedEx to Stanford and we will get those back in a few weeks.  I did get the results back of his other lab work today and his Tacro (rejection med) level was way too low.  It should be 8-12 and his was a 3.  Eek.  It was just 16 last week so we decreased his dose just a tiny bit.  Anyway.. we switched up his med level and we will be back at the lab at 7am on Monday.  On another note, his BNP was 1500, which is great news!!  His heart failure is trending down.. it was upwards of 23000 at one point which is insane.  It was 11,000 when we were taking him of ECMO.  It was 3800 at discharge.  So 1500 is very promising. 

Thursday Nana was moved from the hospital to a rehab facility.  My sister was so stressed trying to pick out the right place for her to go to get better.  We aren't sure if she will make it home again, which is heartbreaking, or if she will need to go to a long term skilled nursing facility. For now, we are just trying to get her up on her feet again.  Prayers for Nana to just feel comfort.

Grandpa Todd and Grandma Monica bought all the girl cousins tickets to Phantom of the Opera for Christmas.  Thursday night was the big night and they had so much fun!  They all went out to dinner and then off to the show.  Followed up with Ice cream and Kam didn't get home until close to midnight.  I am getting old because I could barely keep my eyes open until Kam got home.  I love all these girls so much. 

Six am on Friday came too quickly and we were up and getting ready for Physical Therapy.  This was Owen's first time back to PT since his hospitalization and we wanted to get to the gym before it got crowded for the day.  I am so nervous that he is going to overdue it physically, but he was pretty self limiting.  He bounced on the trampoline for a few minutes before totally feeling exhausted.  He spent a good 30 minutes lifting mats and carrying them around trying to build his fort.  He was pretty proud of it and it was good to see what his physical limitations are right now.

We rushed home so I could tube feed Owen and give him his meds and I was right back out the door with Logi.  He has his 4 month well baby visit, a month late.  This little guy is so squishy and delightful all the time.  He was 18.9lbs (81%) and 27.5" (92%)... "little tiny chubs" as Owen calls him.  We picked a couple vaccinations (I do only a couple at a time) and he barely cried.  Mister tough guy like his big bro.  The tongue is new this week too.  Anytime he smiles.. out comes the tongue.. so adorable!

We wrapped up the day with hair cuts for all.  Then housework, dinner, grocery shopping, and clean up.  I am happy this week is over, but next week is another very full week.  Life is busy and we wouldn't have it any other way.  We are all HOME and that is really what matters.  I am planning a trip to Stanford maybe around the 4th of July.  Anyone know of any firework shows.. beach towns.. along the California coast??  We have done Oceanside a few years but now they do the San Diego show so that is in the running... anywhere else?   Santa Cruz.. Monterrey...San Fran?  Hope you all have a fabulous weekend!!

Making The Most Of Summer

It is summertime in Sunny Arizona and we will soon be enjoying triple digit temps. We like to be outdoors and that means we spend much of our Summer poolside.  Summer is my favorite time of year!  Spending time with my kids, staying up late watching movies, afternoon naps, swimming for hours, and making memories.  I am always looking for quick, grab and go snacks, that are easy to throw in the beach bag.  Who doesn't love cereal?  Eat it anytime, anywhere, and everyone loves Kellogg's cereal.  These little to go cups are convenient and so easy for the kids to snack on poolside. 

Keeping my kids busy indoors during the heat of the day is always a challenge.  Well, I suppose if I allowed it, Owen would just play his video games all day.  So why not get in the kitchen and try a new recipe even the kids can make.  My kids' favorite summer treat is my Gooey Rice Krispy Treats with M&Ms.  With only four ingredients they are quick and super easy. I simply follow the recipe on the back of the Rice Krispy box and add some mini M&Ms. 

 

Gooey Rice Krispy Treats with M&Ms

 

3 tbsp butter

1 pkg (10oz) Jet Puffed Marshmallows

6 cups Kellogg's® Rice Krispies® cereal

1 pkg (12oz) mini M&Ms

 

1. In large saucepan melt butter over low heat. Add marshmallows and stir until completely melted. Remove from heat.

2. Add KELLOGG'S RICE KRISPIES cereal and toss in M&Ms. Stir until well coated.

3. Using buttered spatula or wax paper evenly press mixture into 13 x 9 x 2-inch pan coated with cooking spray. Cool. Cut into 2-inch squares. Best if served the same day.
 

Get Creative!!! I also have thrown in graham cracker pieces, chocolate chips and mini mallows to make S'more treats.  My newest find is adding a little coconut oil to the treats for a sweet coconut flavor.  It's fun to let the kids come up with new ideas and it's a great way to spend time together in the kitchen during those long summer days.  Make some memories this summer!

Walmart wants you to show us how you #MakeTheMostOfSummer with your favorite cereals from Kelloggs.  www.walmart.com/MakeTheMostOfSummer

Leave me a comment and let me know your favorite summertime activity for a chance to win a $100 Walmart Giftcard!

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Stanford Visit

Owen and I had a whirlwind 24 hour trip to Palo Alto and back.  I wish I had some great news to report, but it was pretty uneventful.  We flew in last night, grabbed dinner and crashed at the hotel.  Woke up early, ate breakfast and headed to clinic.  Owen had his echo and ekg.  We did vitals.. he gained a little weight and is up to 41lbs.. that's positive!  Psych came in and we chatted for a while, mostly about Owen's bee phobia (random).  We talked to the transplant NPs and updated them on all of Owen's meds, labs, ect.  Then Dr Rosenthal got tied up in an emergency on the floor (he wasn't due to be in clinic, but on service) and couldn't make it down to clinic before we had to leave for the airport so we saw Dr Almond.  A doc we have never met and had no idea who Owen is.  There are four transplant docs that we are totally familiar with and the new one is in clinic today... I was understanding, but frustrated.  He was smart and answered all my questions as much as he could.  As much as anyone could.  We are just in a position where all we can do is "wait and see" what will happen next.  His heart hasn't fully recovered, but he isn't sick enough to seriously consider transplant.  We agreed to come back in 3 to 6 weeks for a biopsy and to gather cath data (pressures, coronary arteries, ect).  His HR is still in the high 140s, with no real explanation.  He had this "rejection" episode with no signs of rejection.  All things are looking "promising."  So we continue to do weekly echos, labs, and I monitor him closely (daily Blood Pressures and HR).  There is no plan.  We are exhausted from our quick trip, but I'm glad we got to update our team at Stanford and we'll hopefully have even more data after his cath in a few weeks.  I didn't want to change any meds with a new cardiologist today so we'll let Zangwill make med adjustments since he is totally familiar with Owen at this point.  An uneventful trip and we are home.  Tomorrow... Labs! We will enjoy our summer and plan a family vaca for our next trip to Cali.  I'm off to bed.  Thanks for all the prayers, they are working, and we just need to be patient.  Slow and steady...