Saturday, July 24, 2010

What Makes Mason Smile?

........and his baby blues sparkle?

Mason and I sure LOVE being HOME with our family, but I certainly don't have much time to update the blog!!!

Mason is all smiles while playing with his brothers and sister (and Daddy too of course). It is so great to see him following after them, (doing his bum scoot of course), and be able to keep up! With his old broken heart he would tire out after not very long of trying to keep up with "the crew". When he wants sister's attention he calls, "Kaaaaalin" and when he wants the boys he calls, "guuuys" or if wondering where they all went he'll ask me, "da guuuys?" (asking, "where'd the guys go?"). I love to see his beautiful baby blue eyes sparkling and his smile so big here at HOME!

Mason is NOT all smiles right now to most people outside of our little family, even extended family who he knows and used to smile to see. I just hope this will take a little time. He had some separation anxiety before we went to California, but now it is quite severe. Poor little man has been through so much in his 2 1/2 years of life that I definitely don't blame him, but it makes me sad to see how he fears so much now.

Mason is NOT all smiles to visit the transplant team at Primary Children's either. They were so excited to welcome us back a week ago Friday (and we went this Thursday as well, which will be our normal clinic day) but Mason did not act so excited. Nothing against the great team here at Primary's, but he's not ever excited to get blood draws, EKG's or echo', he had just recently started feeling more comfortable around our team at Stanford's Lucile Packard Children's Hospital. After almost 5 months he had started smiling at just a few of them and giving "high fives". And then, we left to come HOME.......adding more confusion to Mason's life.

Even if Mason didn't act excited, I was happy to be kindly welcomed back to the cardiology dept. here. Lucille Packard's CVICU, 3 WEST, and Transplant teams became our fiends and family while we were there and I will forever be grateful to how wonderful they were to us. But, at the same time it is nice to be back doing our clinic visit's at Primary's for they are the ones who have known my baby since 3 days old!

I pray Miracle Mason can over come his separation anxiety and all the fears that take away his beautiful smile around other people. I know it will just take TIME!!!

How is Mason doing?
Since we've been back home his echo's have been beautiful, proving his new heart to be ever so strong. His EKG shows normal rhythms as well. But, we're still having trouble getting his Cyclosporine levels correct. One day it will be way too high, and then with a very slight adjustment in his doses, four days later it will be way too low! The docs all say some kiddos metabolize this med differently everyday with no rhyme or reason, and that would be our Mason of course! This is requiring Mason to have 2 to 3 blood draws a week. Yuck! At least he has a port for blood draws which makes it much easier, but he still hates it. It's still a poke!

Next week: Biopsy #7 on Wednesday at Primary's. IVIG infusion on Thursday at Primary's (that's the 12+ hour long treatment!) Praying for ZERO rejection on #7!

Have a great weekend! Happy 24th of July "Pioneer Day" to you fellow Utahans out there!


ang said...

Hi Summer, I am totally blog-stalking you! My little guy, Ben, had a transplant Feb 2009 and is doing so, so great and it is really fun for me to see how well Mason is doing and to read your posts. When we heard about Mason from some close friends, we were anxious for you guys and prayed lots for Mason and for your family and are so happy you are all together again and he is doing so well! Ü
Angela (tody-n-ang.blogspot)

The Simmons Family said...

Summer.. that post made me SMILE. I am so glad you are home and that he is HAPPY. Time will heal the seperation anxiety and getting used to Primary's again.

I am so jealous that you have a great transplant team to go HOME to. I'm SO nervous for that part of our journey.

Good luck with the Biopsy and we'll never stop praying for "0" rejection!

Kristi Vega said...

I'm with Andrea! SO glad you feel at home with your transplant team! I wish I had that....

We are having a hard time with Gabriella's cyclosporine too. We have gone from .4 to .36 to .38 to .42 to .4 to .38 and not .42 again. AGH! It's driving me batty! But her CellCept levels are off too so we are still playing the balance game.

His sweet eyes are precious. Praying you get a response from your donor family!!!!!!!

reen said...

Hi, I've been following your blog for a bit. Wanted to share about a boy in our community who received a heart transplant when he was five. Earlier this month his wedding announcement was in the paper, he's probably approaching 30 now. It was news that really warmed my heart, and I wanted to share with you how far he has come. Such happy news.

Deana said...

So happy for you and your family! What a blessing and miracle these heart babies are!!!

judd and ash said...

Yay! I am so happy for you and your family, what a blessing to be home:)

Mindi D said...

So glad to hear the update! I'm am so happy for him, i hope he outgrows the seperation deal, that is hard. Libbi does that too, she won't go to anyone but me kurt and my mom. She even cries when grandpa holds her! It makes me feel bad, but they understand. He is so darn cute, post some pics for us when you get time! I love his chubby cheeks!!

Clore said...

Just wanted to say thanks for your story, it definitely touched me. With all the bad things going on around us, it is great to know miracles still exists. should write a book about your experiences and publish it!

madelyn said...

I'm so glad you're all home and together. I've been out for a few days for a 'girls weekend' with my 3 daughters and couldn't wait to check in on Mason. Praying for continued good news and more fabulous pics of the handsome little guy and those killer baby blues. Take care-

Ali F. said...

Summer, it's so fun to read about you and mMson adjusting to your wonderful "normal" life! We miss you here but are thrilled to stay in touch through your blog. Can't wait to watch Mason's progress!!!