Tuesday, June 30, 2009

I'm 19 Months Old Now

Happy 19 months Mason!! Every birthday is a great milestone
for our miracle baby! He still weighs 16 lb's give or take
a few ounces....and still is 29 in's tall. His bum scoot is still
his form of transportation, well.... except for mom's hip, which
is where he also spends a lot of time.

Mason really doesn't seem to like it when we help him stand.
I 'm not sure why, except maybe for having less strength from
his heart failure and such skinny little legs from not gaining
weight. The only time he will put weight on his feet is in his
johnny jumper or saucer. But at least he'll do that right now.

Intellectually he seems to be right on with his development.
He does also have good fine motor skills. His newest skill is putting
objects inside of bigger containers. He discovered how fun this is all
on his own and in fact, this can occupy him for quite awhile some days.

The other day Ammon spilled a large coin jar that Mark keeps
in our closet. I asked him to pick them up, but after 2 quarters he was
done and ran off. I turned back to the mirror to finish drying my hair
and then realized I better get the coins picked up before Mason
puts them in his mouth. When I turned back around to check on
Mason he was taking one coin from the pile, scooting two feet to the
jar and dropping the coin in, turning around, scooting back, and then
starting over! He listens better than my other kids!! After about 10 round
trips he got quite winded, looked up at me, and then lifted his arms
for me to pick him up saying , "Ma Ma Ma Ma". He was pooped out!!

AS FOR HIS HEART: We spent his 19th month birthday, June 30th, at
Primary Children's for a cardiology appointment. ( I really did start this post
that night, but as always ran out of time to finish it.) We were there just to
meet with Michelle, Dr. Everett's nurse practitioner (she's also the trans-
plant coordinator) to up his dose of the Carvedilol. Then we had to stay
a few hours for them to monitor his blood pressure on the higher dose. He
did just fine on the new dose, which is good.

While we were there Dr. Everett came in to see Mason and to
talk with me about him getting the G-tube. She highly recommended
it and said the positive reasons completely out weigh the risks. I had
tentatively scheduled the G-tube surgery for Friday July 10th, but wanted
to talk with Dr Everett before we made our final decision. With her advice
and "go-ahead" we've decided this is what Mason needs. For me it is a tough
decision, but have come to the conclusion that his body is not going to gain
weight right now without it. His heart is too sick! I have tried everything and
not an extra ounce has stayed on his little body in over 4 months!! So
July 1oth it is to get Mason the G-tube. Hopefully it will be just a 1 night
stay at the Hotel on the Hill.

We talked a little about the process of getting on the transplant list and
it is a lot to swallow ! But, basically it will take 3 to 6 months before he'd
be listed. Unless of course, he got dramatically sicker and needed to
be on IV heart meds in the hospital. Then he would get on the list
right away, as long as his blood work and a heart cath show that he'd be
able to get a transplant. For now we just watch and wait! His next
appointment to see Dr. Everett is on July 15th and then an ECHO at
the end of July to check his heart function.

Here's a few pictures from the last month:

Dr.Mason found this stethescope in the toy
box and knew right where to put it!
~look at his poor little skinny legs :(

Mason is smiling because he is thinking.......
"as soon as mom turns around I'm chucking this in the floor!"

This is meal time....or really.....play time for Mason!

And then.....in the bath (usually the kitchen sink) he goes.

Mason loves scooting inside of or under things.

Mason is all dressed up for Preston's Baptism.

This is also at Preston's baptism (which I need to post about!)

Until next time.........and thank you as always, to all those who follow our sweet Mason's progress and offer us continued love and support. It would be so tough to get through this with out you!!!!


Kyle and Alli said...

Moving forward. That is a good thing right? I am so glad that connecting with the transplant team is going ok. We will be sure to keep following and praying as always. Be sure to document it all so that I can learn the ropes in case we follow right behind that path!

P.S. I LOVE Blue Lilly photography! I like to visit that website and drool! I can't wait to see what she did with your family!

queenieweenie said...

What a cutie boy...I love that he "scoots" everywhere-I can only imagine what the bum of his pants look like!

cici said...

Happy 19 months little love!