Thursday, January 31, 2008

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!!!!

Wednesday, January 30, 2008

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!

Tuesday, January 29, 2008

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

Monday, January 28, 2008

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!!

Sunday, January 20, 2008

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!!

Sunday, January 13, 2008

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.

Tuesday, January 8, 2008

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!!

Wednesday, January 2, 2008

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!!