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!!!!

Saturday, June 27, 2009

Thank you

Our family has been so blessed with love, support, and kind acts of service since Mason was born and diagnosed with his heart disease (and before that as well, since we had realized Ammon had special needs)! I want all those to know that have done and still do such kind and helpful things for our family...nothing goes unnoticed and we are truly grateful for everything. It all helps lighten our load and add some sunshine into our lives!!

I need to tell you about two very special people and the priceless gift they gave to our family. These two ladies I had never met, but now will forever remember their example of kindness and service. One day a couple weeks ago I received a comment on Mason's blog from Jana or better known as "The Meanest Mom" (a hilarious Mom Blogger from Philadelphia). She said she had come across Mason's blog and that she wanted to do something nice for our family, so to please e-mail her right away, and gave me her e-mail address. Long story short....over the next hour we e-mailed back and forth and talked on the phone. She explained that her and Wendy from Blue Lily Photography had a gift for us. They were giving us FREE, absolutely FREE family pictures!! (Click on the bold words to link to their web sites)

I was smitten by the generosity of these two perfect strangers. The amazing thing was that I really wanted and needed pictures of Mason. I'd never had professional pictures taken of Mason or of our family since Mason had been born. When I checked out Blue Lily's web sight I was absolutely in "aw" over the extremely talented photographer (whom is well known all over the U.S.) that was going to take our pictures!!!

Wendy was only in Utah for a few days, but we were so grateful she fit us in her busy schedule. We are also grateful for the rain storm that caused our first appointment to be canceled and extended her stay. Originally half our family was out of town, so I was just going to get Mason and Ammon's pictures taken. When she extended her stay 2 days, my family came home so we were actually able to get pictures with all of us after all. Her and her husband were wonderful and I can't wait to see the photos. I will post some when we get then back in 2 weeks. Jana "The Meanest Mom", who lined it all up, just asked me to pay the kindness forward someday. And that I promise to do for sure!!! Thank you so much Jana and Wendy :-)

Another thank you goes out to Stephanie, someone else I didn't know, but is an aunt of one of Mason's very special heart buddies. She gave Mason's blog a much needed 'face-lift'! Isn't it so cute?!! I love it! She also did some other photo-shop projects for me. I am very grateful to her for sharing her time and talents with us!

Life would be much more difficult for our family with the trials we have been given, without great friends, family, and even those we don't know who support , love, and offer us service! THANK YOU for sharing some sunshine with us.

Saturday, June 20, 2009

Busy is Good

A friend asked me a couple days after Mason's last echo "how are you holding up?"

My response was, "I'm okay as long as I keep busy".

And in my life that is not very hard to accomplish! (a perfect example: I started this post almost a week ago, now it is June 26, because I never got past the first sentence!!!)

Mark and our three oldest kiddos were gone for 10 days to a family reunion/ family vacation with all his siblings and their kids. I stayed home with Mason (he is
definitely not healthy enough to travel) and Ammon (I wanted my kids to have a break from helping me watch him all the time and he has summer school too). At first I thought "wow, I'm going to have some extra time to get some unfinished projects done!" Who was I kidding?? I had the two busiest and highest maintenance kiddos at home with me. But remember I said "I'm okay if I keep busy".......

While Mark, Kaitlin, Preston, & Braiden were here:

I was home with these two cute busy boys:

But don't get me wrong, There's no where I'd rather be at this
time in my life than caring for these special kiddos!!

Here's just a few of the things that kept me busy while half my family was gone (most of which are on our daily schedule anyways) -----

*bribing mason to take all his
meds (2 breathing treatments and 5 heart meds twice a day)

*counting Mason's calorie intake

*wrestling Mason to get him in the high chair and to eat at least 3 times
a day
............he doesn't want to eat much lately :(

* bathing Mason after each meal (or "the wrestling match"), because more goes in his hair and on the floor than in his mouth (that makes calorie counting a bit difficult)

Ammon in bed early enough so I can get him up in the morning and on the bus by 7:30am (he goes to school 3 mornings a week during the summer)

*calling home
health care and begging them to come out right way because I realize I am out of portable oxygen tanks.

*making numerous phone calls to our insurance company and all those sending us medical bills.....trying to straighten out billing nightmares

*rounding up all the flip flops
Ammon has borrowed from around the neighborhood and returning them to their proper owners (he has a fetish for flip flops lately)

*frantically looking for
Ammon when he is out of my sight, because most likely he is playing w/ a neighbor's hose, before he causes a flood

*replanting my petunias that
Ammon pulls out of the ground because he was watching me weed ( he says, "Ammon help Mommy")

*pulling up carpet and sucking water out out of the padding with a wet vac in the basement playroom when it floods through the window well (from the never-ending rain we've had) ......and poor Mason gets drenched scooting across the saturated carpet wanting to be right by Mom's side

*redoing the above because
Ammon pours the full wet vac out on to the padding

*..........you get the idea

Busy is good, right???

So at the end of the day when no new projects had been started, I decided with fewer mouths to feed we could skip dinner time, pack up some snacks, and head to the park before putting
Ammon to bed. Ammon loves the slide and Mason just loves being outside. Seeing my two youngest play at the park is much better than cleaning out closets any day!!!

Ammon is in bed (as well as everyone else, now that they are all home) and I am rocking my sweet Mason this is the time of day I think about my poor baby's failing broken heart. This is when I cry in prayer to our Heavenly Father, our God, the Being who comforts me during my trials. Prayer is what gets me through this tough time of worrying about my baby's future. I do not understand the how's or why's of our trial with Mason's heart disease and may never, but when I pray I receive a comforting feeling that He, our Father Above, is watching over my Mason, our family, and the doctors who take care of him.

Today, Mason continues to press on and fight for a future here on earth!!! We love you Miracle Mason!!

Thank you so much to all of you who have left comments or e-mailed me with words of love and support. It means so much to me....more than you know!!!

Friday, June 12, 2009

Tears and Fears

From the title of my post you can well assume today was not a "good news" day, but rather a very long tear filled day up at Primary's. Today was Mason's 2nd ECHO since the one in April that showed lowered heart function (in scarier words: heart failure). We have prayed and hoped over the last 9 weeks that his new meds would improve the function, but unfortunately this was not the path Mason's little heart has taken, and there was NO IMPROVEMENT in his valve leakage or ventricle squeeze today. So basically he is in true heart failure :( Words I have avoided and hoped would never describe our little Miracle Mason!!!

What now? I met with a nurse
practioner from the heart failure/ and transplant team. They started Mason on 1 more med Carvedilol which is also to help the squeeze (unfortunately it usually only has good results w/ heart patients who need better function in their left ventricle....Mason doesn't use his left ventricle.....that's the broken part of his heart....so he needs help w/ his right ventricle's squeeze.....basically, this is kind of like a last resort med). We had to stay for a couple hours after his first dose to monitor his blood pressure, because a side affect can be too low of blood pressure. His was fine. They also drew some labs (more tears for Mason and I both this time...he hates the lab...and I don't blame him) to get a base line of his blood work for our new heart team. And we will go back every two weeks to up his dose on the new med, monitor it, and begin working w/Dr.Everett.

Do we know if transplant is the answer? Not yet! Not everyone is a good candidate. Antibodies can be an issue I know. You can have too many sometimes. I honestly don't know very much yet. Just bits and pieces. They will also do more echo's and a heart
cath before discussing transplant seriously. So many questions! So much wondering! And now we just wait.......

I've had many tears of joy as Mason has blessed my life these last 18 months. I've had many tears of gratitude to my Father Above for allowing Mason to live at times when he was so close to returning Home. But today, I've had tears because I am honestly scared! I have so many fears! Fears of the unknown! Fears of losing my baby! Fears of what lay ahead! Fears of making the wrong or right choices for Mason! Fears of
adequately caring for my other children in the midst of Mason's heart worries...............oh, tears and fears!!!!

My heart melts as Mason smiles at me right now. He is
so happy all the time and has no idea why Mom is so very sad today.

Sunday, June 7, 2009

Trying to Stay Positive......

(His PJ's say "Heart Breaker".....very appropriate!)

I finally received a call from Cardiology with a date for Mason's next appointment and ECHO. It will be this Friday June 12th. The scheduler said she apologized for the wait but they had to get permission from Dr. Sarrel to rearrange appointments and squeeze him in. So it will be 5 weeks from his last ECHO instead of 4 like we had planned, but she was actually booked until end of July!!

Then the scheduler said "Dr. Saarel would like me to go ahead and schedule in 4 more weeks to meet with Dr. Everrett" ( she is the heart failure/ transplant specialist). My heart dropped!!! She said Dr. Everrett was booked until September so she would have to get special permission from her as well to rearrange appointments. I remained rather calm until she called back within 10 minutes and had made our appointment on July 15th. Okay, so what would you think?...it took 2 1/2 weeks to get our June appointment......and then so quickly things were worked out for July!!! They must just be a bit concerned??!!

I am trying to think Dr. Saarel and Dr. Everrett are just trying to be ahead of the game but, honestly its hard not to think that they have lost hope that his meds he has been taking will lead us to seeing improved heart function at this next

What do I think? Mason doesn't seem to be improving. He still seems exhausted a lot (but still won't stay asleep very long)and his coloring to me doesn't look very good even on the O2. People tell me he looks good but, to myself I say "not really". Yes it makes me sad!!!

Also, this week he has had a cough and some tummy bug! He has thrown up more that he ever has (as well as 'blowing out' his diaper a lot more than usual). So there goes for gaining weight this week! I didn't even take him into to be weighed. I figured why bother myself with bad news. At least he didn't get dehydrated because he could still keep down breast milk most of the time. There's a bonus for still nursing I guess.

For now if you will join our family in praying for our little Miracle Mason. We are praying for a 'good news ECHO' and if that doesn't happen.... then,that we will be blessed with peace and a knowledge of what is the best path for our sweet baby at this time.