No Sugery Yet . . .

Hello everyone! I wanted to thank everyone who has called, texted, e-mailed and prayed for Mary. We have had lots of wonderful visitors and Mary always enjoys seeing people who aren't wearing stethoscopes!!
Well, we still don't know when we will have Mary's surgery. Right now she is scheduled for tomorrow afternoon, but we still don't know what will happen tomorrow with the supplemental nutrition we requested for her. (PPN) If we get it first thing in the morning, then we may be able to do the surgery tomorrow afternoon. But we are thinking that most likely it will be Monday. Anyway, sorry I don't have more of an update than that. Kate and I are absolutely exhausted and need to get some sleep. Keep the prayers going!! We know Mary will be OK!!!!

Update on Mary

Well, I know many of you have been waiting for an update on Mary and our progress in the hospital today. To be honest, we didn't make much. First, Mary is doing very well and is in high spirits. She spent most of the day seeing therapists that Kate has lined up for her. She saw a physical therapist, an occupational therapist, and a speech therapist, mostly just to pass the time and make the day in the hospital go by a little faster.
We knew at the beginning of the day that we couldn't do the procedure she needed, because she still had barium in her system from the upper GI scan from yesterday. So, finally tomorrow at 8:00 am, she will be getting her 'Milk scan' done in nuclear medicine. This is a more accurate way to determine if Mary is aspirating food from her stomach up into her airway. The surgeons want to know if she is or isn't [aspirating] to justify putting a Nissen fundoplication in prevent it. (We want the Nissen regardless.)
Anyway, after that test, hopefully we will go forward with surgery. We are looking at either late Friday or Monday for that. The surgery will most likely be done endoscopically (through two small holes in her tummy with a camera in one of them), so that is good for Mary and they will put in a G-tube (gastrostomy-tube) and a Nissen if they determine it is necessary. We know the G-tube is necessary for Mary to eat, since she can no longer take foods by mouth.

Ok, I know that is a lot of medical terms for those of you reading this who are not familiar with the disease, but I just wanted to give you all a good idea of what lies ahead in the next few days. We know will be here in the hospital as least through the weekend, if not into next week, depending on when the surgery occurs and how well the recovery goes.
Please as always keep Mary in your prayers!

Another Trip to the Hospital!

Hey everyone, most of you have probably already heard, but Mary was admitted to the hospital again today. We went in this morning for a swallow study to be followed up by an appointment with her G-I doctor. Well, the swallow study didn't look so good, (she was aspirating her food into her airway) so her doctors recommended she stay in the hospital so we could feed her via an NG tube. (Which is a tube that goes down her nose and throat and into her tummy for feeding.) She is being evaluated tomorrow for a G-tube surgery, which is a tube that goes directly into her stomach for feeding, rather than down her nose.

Please keep her in your prayers and we will keep you all updated!!!

Ryan, Kate and Mary

Mary is 11 months Old!!

Today is Mary's 11th month birthday!! She celebrated with Mommy and Daddy and her dogs, Copper and Sam. And, she spent the entire day in her pj's because she just wanted to relax all day - ok, Mommy did too! She had a wonderful chocolate caked made by Mommy and even opened some presents.

She also enjoyed chatting with her good friend Chilly Willy and topped off the day with a bath and her new towel her Grandma made - doesn't she look cute?

Please keep all of Mary's friends in your prayers. There are so many sick kiddos in the hospital right now and we pray every day they will get better and return home soon!!

Visit from Grandma and Gramdpa!

Mary had a special visit this weekend from her Grandma Julie and Grandpa Bruce who came to visit all the way from Minnesota!!
Here is a picture of Mary showing Grandpa Bruce her new bubble maker:
And here is a picture of Mary taking a bottle from Grandma Julie, while daddy plays "thumbkin":
We have been having lots of fun on the visit, but Bruce and Julie brought the COLD weather with them from Minnesota, so we haven't been able to do much stuff outside. After this they are heading to Alabama to visit Mary's cousins Reagan and Alexander!!

Welcome to Holland

Hey all, I ran across this story a few weeks ago, and just wanted to share it with you all. Hope you enjoy it. - Ryan

Welcome to 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 guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all 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 stewardess 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've 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 guide books. 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 a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and 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, ever go away... because the loss of that dream is a very 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.

Sam and Mary play with Bubbles!!

As many of you know, Mary and Sam are best friends. Here are some pictures of them playing with Mary's new bubble maker that dad converted for her for Christmas.
And a few minutes later . . . . .




and later on that day . . . . .


I think everyone was worn out!! Kind of like the rest of us after the holidays!!

Happy New Year!!!

Mary wanted to wish everyone Happy New Year!! Recently she has been enjoying reading books about the Star-bellied Sneeches, pictured above. She has also been working on learning the alphabet with Mommy. Mom reports that she actually said "momma" for the first time today! Since she has been saying "Daddy, dadda, daddy, dadda" for a few months now, Kate thinks it is about time for her to say mommy!!

Trip to the Bark Park!!

Well we had an exciting trip to the "Bark Park" in Clarksville yesterday. . . about 30 seconds after arriving at the park, Sam got attacked by a pit-bull!! He was OK, just bleeding a little bit from the ear. Here is a picture of Mary, Ryan, Sam and Emma at the park. Mary is using her new chair also.
I think we even got a picture of the dog just before the fight happened. As you can see, Sam is sizing up his competition. Little did Sam know that he was no match for a TRAINED KILLER! (The pit-bull's face is not shown to protect the guilty!!)
Not much else is new. Mary has been working on her "Cindi-Lou Who" look after watching the Grinch that stole Christmas. Here is a candid shot of her new hair-do:We hope everyone has a wonderful new year!! Please pray for health for Mary in this coming year and pray for our Troops in Iraq and Afghanistan, especially for Mary's Aunt Angie and her God-father Joe.

10 Month Birthday Party!!

These are some pictures of Mary's 10 month birthday party!! Ever since we got Mary's diagnosis, at around 7 months, we've thown mary a monthly birthday party. Grandma and Grandpa were here for this party and we had a very good time.
We try to blow out the birthday candles on the Christmas Tree cake.

Mary got to taste a little bit of the frosting on the cake!Grandma and Grandpa read Mary a story and then she went to bed. Not one of the most exciting parties, but it was still lots of fun!

Mary's Kid Kart

Here is a picture of Mary in her Brand New Kid Kart, with her trusty side-kick Sam right by her side! Mary just got the cart this afternoon thanks to the hard work of her mom! She is still getting used to it, but we think she will like it very much! It helps her sit up straight and TALL!!














Here Mary is helping mommy on the computer. Mommy is sending some e-mails and probably checking out cool websites like www.miracleformary.com. Sam is still trying to be the center of attention!!








Here you can see how much Mary enjoys being in her chair. She is spelling her name with a LeapFrog toy she got from her Grandma and Grandpa in Minnesota for Christmas. We really like this cart because it has a BIG, adjustable tray on which Mary can play with all of her toys!!

Merry Christmas!!

Merry Christmas everyone!! Mary is celebrating
her first Christmas today! She got to go to church last night, which was very nerve racking for mom and dad because of all the "germies" this time of year. Here is a picture from last night:


Isn't Mary's dress pretty?




We opened presents this morning and Mary
got lots of nice things from all of her friends
and relatives.

Sam even got in on some of the action, but it wore him out!!!

I'm Feeling Better

Mary continues to get better every day!! She is getting ready for Christmas and is very excited to spend her first Christmas at home with her mom and dad, grandparents and doggies!

Mary had a follow up doctor's visit yesterday and he said her lungs sound a lot better - YEAH!!

Here is a picture of Mary that was taken a few days before she went into the hospital. The next a picture of her and her doggies - Copper and Sam!