Sunday, December 30, 2007

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.

Saturday, December 29, 2007

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!

Thursday, December 27, 2007

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 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!!

Tuesday, December 25, 2007

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!!!

Saturday, December 22, 2007

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!

Wednesday, December 19, 2007

Finally Home!!

We are finally home and boy does it feel good!! You can tell Mary is happy to be home too - she is all smiles and just looks so much more comfortable. She is continuing to need a lot of suctioning and cough treatments, but I guess that is just the nature of things right now. She's not eating as well as we'd like her to, but we are hoping it's just the medication and the fact she's not up to par yet.

Thank you for all the prayers and please continue to pray for her health and strength. We are looking forward to spending her first Christmas at home and also her 10 month birthday on the 28th - yeah!!

Ryan and I are exhuasted and are going to sleep as soon as Mary is down. Keep checking back for more updates!


Mary is going home!!

Hi all! Just a quick note to let you all know that Mary is feeling much better today and we should be going home shortly. Grandma and Grandpa Windscheif got to town last night and they should be visiting the hospital soon and hopefully helping us pack up. Also, Ross, Jenn, Alexander and Reagan (Mary's Aunt & Uncle and cousins) should be visiting today on their way to Minnesota! Yeah!

Thanks for all the prayers and support! Keep them coming!!

Ryan and Kate

Tuesday, December 18, 2007

A Rough Night

Well, last night was not such a great night. We had new RT's on last night and they weren't very responsive to Mary's home machine or her new mask. Ryan and I were very frustrated because they messed with her for almost two hours and she didn't go to sleep until midnight. We did intervene several times so Mary could calm down and rest. Tonight we will be the only ones putting on her mask and doing her coughs!!!

We are sad to say that Mary isn't feel so well today. She has a lot more secretions and is very junky. They are changing her antibiotics and we will be staying another day. Hopefully not too much longer and we'll be home.

Mary's grandparents are coming down to help out - she'll be glad to see them and I know they'll be glad to see her. Please continue to pray that she starts feeling better soon and we're able to be home by Christmas - if we aren't we'll bring it to her!!!


Monday, December 17, 2007

Mary has a visit from Santa and Mrs. Claus!!!

Well, we wanted to post some pictures of Mary in the hospital since she is feeling SO much better today! She woke up this morning and she was smiling, even with her mask on!! She was a lot more into playing and eating today as well. And the best news of all . . . the doctors said we may go home tomorrow as long as Mary does well tonight!! Today we finally switched her over to her home BiPAP ventilator, so we were very excited because it works so much better for Mary than the big BiPAP in the hospital that is made for adults.

Mary was feeling so good, she played with all of her switch toys. Here is a picture of her playing with the talking Elmo that daddy adapted to a switch for her. Notice that Elmo is wearing a BiPAP mask and a blood pressure cuff just like Mary!!!

Mary even got a bath today! Here is a picture of her and mommy right before her bath. You can tell her hair was getting a little greasy!!

And the best thing of all, Mary had a surprise visit from Santa and Mrs. Claus!!! As you can see they were the real-live Santa and Mrs. Claus visiting direct from the North Pole. They made a special trip to visit all the little boys and girls in the hospital!

Message from Madison!

Hi All, I wanted to share a special message that we recieved today from another Miracle child, Madison is a 10 year old with SMA Type 1. Below is the message she wrote to Mary:
Date: Sun, 16 Dec 2007 19:27:49 -0800
Subject: i am a miracle

hi! my name is Madison. I saw pictures of Mary on her web site. She is so cute! My web site is I have SMA type 1 too. I am 10 years old. Keep believing in miracles! They can happen! Love and prayers, Madison

This was my reply:
Dear Madison (and parents),

Thank you SO much for writing! We know you are a special miracle, just like our little Mary is a miracle! You have a very inspirational story that I enjoyed reading about on your website. (I just read the article by Candace Preston-Coy in the Dublin Newspaper) You and your parents have such a great attitude and we feel exactly how you feel. The doctors also told us to "just enjoy the time we have with Mary", but we don't accept that answer! We know Mary is a fighter and we believe in miracles!
Thank you so much for writing and for praying for our little Mary. We pray for you as well, and all children with SMA. Thanks also to your parents for fighting for you, and for a cure, and for fundraising, and lastly for sharing your amazing story! We hope you have a great day and stay healthy! I'm sure you will be one of Mary's special friends and we look forward to meeting you someday, perhaps at the SMA conference!

Ryan and Kate (Mother of Mary, 10 months, SMA type 1)

The following is an excerpt from the article I mentioned above:
. . . Madison has SMA Type 1 (spinal muscular atrophy), the leading genetic killer of children under the age of 2.

The disease destroys nerve cells known as motor neutrons, which control voluntary movements such as crawling, walking, head and neck control and swallowing. Most deaths come from lung problems, Madison's mother said.

When Madison was 1 year old, doctors dismissed the idea of providing special equipment to improve Madison's quality of life, and told the Reeds to take their daughter home and enjoy what time they would have left with her.

Annette and Carl dogged the physicians, convincing them Madison was not "the textbook SMA child," and had the right to anything that would prolong her life.

Through their advocacy and the constant care she receives from her mother, nurses and other trained volunteers, Madison celebrated her 10th birthday on Feb. 4.

Madison needs 24-hour care only medical professionals, trained in the treatment of SMA patients, can give. Several times a day, a tube removes accumulated mucus, which would choke her if not removed. Her disease also leaves her susceptible to what would otherwise be minor ailments, said her mother, and she hasn't attended school since last October, when colds and flu spread among her classmates. A tutor works with her at home four or five days a week.

Madison knows she's sick.

"She hears and knows," said her mother.

Madison was hospitalized in January 2006 for 10 days with a severe respiratory virus.

"We almost lost her," Annette Reed said. "This was the worst illness she has been through, and it really took a toll on her emotionally. ... She didn't sleep for days because she knew she stopped breathing."

If her own health problems failed to remind Madison how precarious life is, the deaths of several friends, some who were not as sick as she is, bring that reality to her.

It's not all doom and gloom in the Reed household, however. In fact, the opposite is true.

Madison sleeps until noon, a routine that began during last year's illness, then it's time for a bath, teeth brushing, hair detangling and breathing treatments. Then mother and daughter do a little role playing, with Madison playing Michelle from the old TV series "Full House" and her mother playing one of Madison's friends.

Madison then takes a spin around the house in her electric wheelchair, then settles down to watch a video, work on her computer or talk to Hannah, a friend in Florida who also has SMA, via computer on a daily basis. The girls' both have programs so they can see each other as they talk, Annette said. . . .

--Truly and amazing story, and worth taking a look at her website as well. Very informative!

Lastly, thanks to everyone who has visited Mary's new site, and who have called, and e-mailed, and prayed for Mary! She did well again today. Coming off the BiPAP (ventillator) during the day to eat and play. She smiles while playing with mom and dad and even our friend Cherie who visited and read her some books! She is truly amazing and we have faith that she will get through this and all of the struggles that lie ahead of us. Thanks again to everyone!


Sunday, December 16, 2007

A Good Night's Sleep for All . . .

Well, Mary had a pretty good night, she slept pretty soundly through the night on her BiPAP machine. She only woke up a few times to get a new diaper and adjust the mask. Luckily, we "won the room lottery" and Kate was able to get some sleep in a private family room. That was SO nice. Ryan stayed in the room with Mary but was also able to get some "rack" (excuse the WP humor) on the fold out chair.
Mary continues to do well. Her numbers stayed up good through the night. Hopefully she will eat well and we can get the secretions from her lungs under control today. Still no news about when we go home. Hopefully we will hear more when the doctors do their rounds at 1000.

Saturday, December 15, 2007

Update on Mary

Mary is doing a bit better today and has been off BiPap a few times and is keeping her stats up. We are so proud of her and how well she is taking to everything. Ryan and I are pretty exhausted, but we're pushing through. We are just amazed at how brave our little girl is. We will be in here through the weekend and probably the first part of next week. UGH!

Thank you all for your thoughts and prayers and keep checking back for more updates.


Mary has pneumonia :-(

Wow, what a day it has been. . . we decided to take Mary to see her pediatrician this morning, because her oxygen saturation levels were a little low last night. While we were in his office, she had a coughing fit that nearly took her breath away. It was so scary. He sent us to the ER here at Vanderbilt Children's Hospital. They did several tests, one of which being a chest X-ray, and determined that she has pneumonia in her upper right lung cavity. We think we caught it early and she is taking to the treatments very well, so we are hoping that she will pull through it quickly. Our friends Joe and Katie (and Emma) came down and brought us dinner tonight, which was GREAT! Thanks guys! Well, I better get back to the room before Mary wakes up for another cough treatment. PLEASE keep her in your prayers!


Friday, December 14, 2007

Brave little Mary!

I wanted to post this picture of our brave little Mary while she was getting her equipment today. She wasn't scared at all!! Can't say as much for her mother and I. All & all, everything went very well and we were happy we were able to do it in our home and not in a hospital or clinic. We want to thank Mary's doctors, her respiratory tech, and all of you for your prayers!

Thursday, December 13, 2007

Mary gets her respiratory equipment!

Mary got all of her respiratory equipment today! We are very excited about this, because it is something that she needs, but I will tell you, it is the hardest thing I've had to do as a dad to put a ventilator mask on my little daughter. But Mary was a little trooper and she did very well! We will post some pictures of the equipment soon!

Welcome to Mary's Blog!!

This is where we will post continuous updates on Mary's progress and other news about Mary and her fight against Spinal Muscular Atrophy! Check back often!!