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Well, after being home not only a week, we are back in Indy at Riley Children's Hospital. Mason could barely hold down any feedings so they wanted us to bring him back for fear of dropping anymore weight. Yesterday morning he had surgery for Pyloric Stenosis. This is caused by the enlargment of a stomach muscle that doesn't allow food to go down as it should. So, we had that taken care of along with a G-tube inserted into his belly. This is an alternative feeding method instead of the NG tube in the nose....in the long run, much more comfortable for him. This may not take care of the reflux issue, so another surgery may be necessary, but there is no way of knowing at this point. Mason is still having trouble keeping down feedings, but that will happen until he heals a bit more. He is quite the little trooper. He sleeps alot. He had a rough night last night, but we expected that being just a few hours out of surgery. Hopefully all the feeding issues will be solved and we can come home soon. We really miss Reece, who my wonderful sisters have been watching over...bless their hearts! I seriously don't know what I would do without the support of my family and close friends. My family has gone above and beyond to help us in any way they possibly can. I am so grateful for them and I thank god everyday to have them in my life.
Above are some pictures of Mason before we left Riley's last week.
8 comments:
We're all praying for a quick and speedy recovery and no further complications so you can all get back to us. We miss you guys!
Keep us posted, I've been waiting for some new pics - thanks for taking the time to update us!
Hi. Thanks for updating us and also for posting the cute pictures! I'm glad Mason made it through his first surgery well. The g-tube really is TONS easier than the NG.
I had been thinking about you guys since (I think) your husband wrote a note on the CDLS Kids message board. Hopefully everything will get sorted out now BEFORE you leave the hospital and maybe they'll give you a feeding pump this time which also helps a lot.
Best!
How cute is he?!?! I still can't get over that thick mop of dark hair. :-) I still see some Reece in him! Glad to hear surgery went well. We miss you guys and can't wait to ese Mason.
Glad to hear that Mason came through his surgery OK, and I hope he'll be as comfortable as possible and make it home again soon! I agree with Heidi that a feeding pump can definitely help decrease reflux. We'll be praying for all of you.
Thanks for updating us during this crazy period in your life. We feel helpless, but, please realize that nothing is too large to ask of us. We'd move mountains for you. Please give Scott our best. We spent time with Reece yesterday and had a good time swimming and playing ball.
MEGAN!! wow! that little one has been through A LOT! i think that this is all a good thing as far as finding out what is wrong. i applaude you and scott going with your gut and finding out what is causing issues with the little guy's tummy. i am thinking of him and of you all, and hoping for a speedy recovery. his g-tube will be so much less stressful, and then you can take your time with helping him feed orally. and like karen and heidi said, a pump will work wonders as far as curbing the reflux because you can set it at a pace right for him. all around, this will be so much better once he is home.
keep us updated. and let me tell you, that little one is SO CUTE!! i LOVE The third picture!! can't wait to see more!
Megan,
I came across you on Lisa Leonard's blog. I also have a son with CdLS. He is now 20 years old. I remember well the first months of his life. It can be so overwhelming but it sounds like you are handling it beautifully. I don't know if you've seen this poem before but it meant alot to me when I first saw it 20 years ago. I hope Mason gets over these humps and gets back home soon. God Bless you all.
Rhonda Harter
Welcome to Holland (aka The Beauty of Holland)
by Emily Perl Kingsley
I am often asked to describe the experience of raising a child with a disability -- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful vacation plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very, very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The flight attendant comes in and says, "Welcome to Holland."
"Holland?!?", you say." What do you mean, Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy. "
"But there's been a change in the flight plan. They landed in Holland and there you must stay."
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It's just a different place.
So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, 'Yes, that's where I was supposed to go. That's what I had planned.'
And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.
That's an awesome poem - thanks for sharing!
It's like someone told me after Jesse died, if everyone took all their troubles and put them in a huge pile and then had the opportunity to pick their own back up or someone elses we would all pick our own back out of the pile! Sometimes out troubles seem so much worse until we look at everyone elses troubles.
My mom was complaining the other day about her foot hurting so bad and then we ran into a lady in the mall who had a little girl with only one leg - my mom said, my foot might be hurting, but thank God I still have both feet!
When you're in the midst of everything it's hard to see the rainbows in our lives, but they are there if you look hard. Megan, I know you guys feel truly blessed just to have Mason in your life and we are all so blessed to have you guys in our lives. Hang in there - things will get better :-)
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