Easter .. Eggs, Pageants and Cardio

This last week has been another busy one, but we had a wonderful time celebrating Easter.  We kept all our family traditions of dying eggs, treasure hunt with the Easter bunny, egg hunts and time with family.  The kids love dying Easter eggs so I suck it up and let the mess happen.

Logan did not understand the concept and smashed all his eggs, attempted to eat them (gross) and then he squished egg yolk all over the floor.  "Messy babies are happy babies".. Owen's OT used to always encourage him to get messy.  It always failed. 

On Friday night, we took the Sister Missionaries to the Easter Pageant at the Mesa Temple.  We haven't been in like forever, or maybe never.. there were SO many people there.  There are about 10,000 visitors each night of the pageant and we were super lucky to have reserved seats.  Owen wasn't feeling well (more on that later), so he stayed home with Carson. 

We met my parents and Uncle Rog there.  I'm so glad we stopped for loads of chocolate treats on our way.  We also got a killer parking spot thanks to my mad parking skills. It was such a fun night and the pageant was better than expected.  It was a celebration of the resurrection of our Savior. 

Sunday morning came early when all the kids woke up at 5am.  They went on their Easter scavenger hunt to find their baskets and we had a quiet morning together.  We spent the afternoon with my family and Nana.  Owen felt pretty awful all day and laid on the couch the entire day.  Poor guy.  Overall it was a great weekend and Daddy even convinced Owen to get out to see Batman vs. Superman on Saturday morning for a few hours. 

Now I just need to do a better job of hiding candy.  I don't know where he keeps finding candy because there wasn't much to begin with.  Several times a day I find him double fisting suckers.  Crazy boy.

I never got around to posting Logi's 15 months post.. but I posted the photo on FB yesterday and everyone commented on how much he looked like Owen.  Here is their 15 month comparisons. 

Yesterday I ran Owen into cardio for a quick Echo and clinic visit.  He has been miserable since St Patty's day when we switched his anti rejection meds from CellCept to Sirolimus.  Ever since then he has had major stomach aches, mouth sores, and just overall yucky feeling.  He hasn't eaten much or moved from the couch.  His echo did look about the same .. no major changes.  His med levels came back really high so we made some changes and will redraw labs tomorrow morning.  I feel like there has to be better days ahead.  These twice weekly labs, monthly echos, yucky med side effects... Owen just needs a small break. 

He always finds something to keep his spirits up.  Yesterday he raided the gloves and masks in the office.  It seems like he is feeling a bit better yesterday and today so maybe his body is just adjusting.  I sure hope so.  We shouldn't need another echo until we go to Stanford on May 2nd for biopsy.  Hopefully we can catch a break from the lab.. we wouldn't miss it one bit.

Goodbye March...  Bring it on April!

Spring Break Wrap Up

Spring break is over and we are back at the daily grind.  I'm so happy we didn't travel for break and it was nice to just relax and spend time together.  Owen was so excited to have Gigi over for some Minecraft fun and they didn't move from this position for at least 2 hours.

The weather has been so perfect and I hate to be inside.. so we spent plenty of time at the park.

Owen had his monthly echo and visit with our AZ transplant team and everything looked the same.  His Stanford Transplant team have been talking about Owen the last week and a half and decided to put a hold on listing him for transplant.  So that's great news!!  We started him on a different immunosuppresent called Sirolimus and research has shown it can help slow down the progression of Coronary Artery Disease.  It's not a guarantee, but worth a try.  He has had some yucky side effects since the change and labs have been even more frequent... really hope it is worth it in the end.

A huge issue is his poor growth.  He hasn't gained a pound in well over a year and hasn't grown.  Despite my giving him 1800 calories of blended food in his Gtube and orally eating like a champ, he averages 2300 calories a day.  It's still a battle to gain and he gets tummy aches because it's just so much food! 

His liver is acting up and labs are very elevated.  We are going to keep an eye on them (more labs) every two weeks and hope they start trending down.  Otherwise.. we will be adding another specialist into the mix. 

Overall.. things are okay.  He is excited for his next biopsy on May 2nd and is always busy picking out his next lab toy. :) 

Owen had his dental cleaning/xrays last week and did great!  My kids are winning with a record of no cavities ever.  Thanks to good genetics I suppose. 

On Tuesday we met my dad at Barrio Queen in Downtown Gilbert for Taco Tuesday.  SO GOOD!!  It was fun to spend some one on one time with Grandpa Boom.

Daddy had a few days off midweek so we took the kids to Zootopia.  I was super worried this little monkey would be a crazy in the theatre.  He was so great and slept most of the time.  Afterwards we let them ride in those germ soaked kiddie quarter rides outside the theatre.  Owen was terrified in the back of this little plane and jumped right out.  Logi loved it! 

This was the fountain where Mr Logi fell, skinned his knee, smashed his lip and then did it again. 

There have been so many new restaurants built in Downtown Gilbert's Heritage square we have been wanting to check out.  So on Daddy's day off, we headed downtown for some fish tacos and ice cream.  It was fun to just sit on the patio and talk.  Kam is always super talkative, Owen says the most outrageous things and Logi likes to play with everything on the table.  Owen and Logi has never been to a library before (gasp! I don't like reading) and so we took them for the first time ever.  The last time I had used my library account was in 2006.  We walked around the kid section and Owen didn't want a single book.  He had already picked out a World of Warcraft book with Daddy and that was good enough for him.  Kam had to get books for Honors English (boring) and I was happy to check out with two book (less to take care of) and go.  Maybe we will be back in the next 10 years.

Owen had been begging me to let him go to a movie by himself.  I let him go with Kam to see Zootopia again on their own this time.  He felt pretty awesome going sans parents.  Apparently it's not cool to go to the movies with your parents at 8.  Glad he has a cool sister to accompany him.

That was a wrap on our Spring Break.   Only 8 weeks until school is out for this 2nd and 10th grader! 

Spring Break Time

Today officially kicks off Spring Break in AZ.  Kam has one more week before she gets her week of relaxation.  Owen has two weeks off.. oh wait... no different than every other day for him.  Besides getting a break from daily reading, writing and math from mom, his teacher is taking her well deserved two weeks off as well.  We didn't plan a vacation this year because we are saving our airline miles and money just in case we need them to get back and forth to Stanford.  So we will stay home and do some serious Spring cleaning between swimming, park time and catching up on movies at the theatre. 

 

The weather in AZ has been unseasonably warm since mid Feb so we already got a head start on all our Spring fun. 

 

Catching Up

It has been two weeks since I last posted and I am going to attempt to catch up again. Logi and I were hit with a beast of a virus (not the flu), and it took us down.  Now that I feel human again... I am finally catching up on life.  The boys and I have been spending too many early mornings at the lab.  Poor Owen's veins are just bruised and scarred but his levels are just crazy.   His Prograf level keeps coming back at 18 (goal range is 6-8)... too low you risk rejection, too high you risk kidney damage. His INR (coagulation level) is new to us since we started Coumadin in January.  His last INR came back at 8.0 and shouldn't be higher than 1.8-2.5.  I was told to wrap him in bubble wrap and watch for bruising all over. Hopefully after skipping a few doses we will have better results tomorrow. 

Our team at Stanford still hasn't presented Owen and while I understand there are urgent cases that come up, it has been seven weeks.  Seven weeks that I have been talking to social work, Psych, insurance and signing consents.. I'm anxious to know what their plan is going to be moving forward. 

Owen has been working hard with his teacher and crushed all of his IEP goals we set for him in the fall.  We are going to have him do the second grade reading and math state testing to get a baseline of where he is currently at.  He isn't motivated to read, but I force it on him every afternoon and he gets lost in his books.  He doesn't do math "by the book" but closes his eyes and comes up with the right answer.  I have no idea how he finds the answer, but he does it. 

His weight is a daily battle.  He is down to 42lbs and I am using his gtube around the clock.  It's seriously so frustrating!  We had him up to 47lbs three weeks ago before that darn stomach bug hit him.  His little lips are always so dry and I pump him full of fluids.  Perhaps too many diuretics?  It's always a balancing act.  We will get there. 

For the most part.. he is a normal little guy who loves to play at the park, build Lego creations and hang with his cousins. 

Kam has been slammed!  Last week they had the Golden Scholar assembly for the kiddos that have maintained a GPA of 3.8 or higher over the past 4 quarters.  Kam, Connor and Ry were all awarded!  (Insert proud face here)  Kam has been applying for summer internships and volunteer opportunities in the medical field so cross your fingers that all the letters of recommendations and good grades will help. We are only two weeks away from Spring Break and I'm sure she is the most excited of us all!  We are staying home this year and I'm sure clocking plenty of driving hours... she really needs to get her license soon. :)

Mr Logi is almost 15months! Daddy gave him a legit haircut and I only miss the shaggy look a little.  This little munch is the most active little guy of our three.  He loves to run around the park, go outside, ring the doorbell, ride his trike, go for rides in his little push car, play at the pool, and go "bye bye" with anyone that is leaving.  He eats one day and then refuses the next.  He loves to wash his hands in the bathroom sink all by himself and is Mr Independent lately.  He is the best snuggler and is generous with his kisses. Logi loves his books, cars, blocks and balls. He always cleans up his messes (with a little help).  He has a naught side too... splashing in toilets, throwing things in the trash, turning off the tv or computer when you are not paying attention to him, and getting into the big siblings things.  He is the sweetest bubba chubba around and none of us can get enough (except Owen, he has had enough by about 9am).

That's a wrap on this update. I'll post more day to day happenings the rest of the week. :)