Mary's Trip to the Mountains!!!

Hey everyone! I know its been a while since we've posted anything, so here are some pictures of our recent trip to Monterey, VA. We went to visit Jan and Cathy, who are our friends Wendy and Robert's parents. They have a great place that was very secluded in the mountains. It was great to get out of our toxic rental house and get some fresh air. Mary felt much better up there, even though mom was nervous about going over the 4 mountain ranges to get there.

Mary enjoyed picking flowers.

We went for a nice walk in the Big Valley and saw lots of cows, sheep, goats, deer and other animals.

Mary and Mom at the Confederate Breastworks on Shenandoah Mountain.
Check out Mary's cool new shades!
Mary and Dad enjoying the nice weather!Hope you all had a great week! We are finally getting moved into our new house this weekend (hopefully) this whole move has been such a mess.

Mary in the News

Hi Everyone -

Sorry we haven't posted in a few days. First off, Mary is home from the hospital. She came home Friday, but then had another ambulance ride on Saturday morning as she dropped her oxygen to 50 and briefly stopped breathing. Ryan and I worked on her and were able to bring her back. Once at the hospital her lungs were clear and she was smiling and talking. We think she's having a hard time adjusting to the new climate and with allergies. We continue to be aggressive with her airway clearance and are praying she will shake whatever it is very soon.

Mary is a little star. A week ago a news crew from Fox 17 in Nashville came out to the house (well, our friends house because we were about to move) and shot a story on Mary and her fundraiser. To view it click on the link below:

http://www.fox17.com/newsroom/top_stories/vid_1524.shtml

It aired on the morning show this morning and will air again on the 9 p.m. news. We're not sure how long it will be on their website.

Thanks again for all the prayers and support for Mary. Will update more when we can and add a few pictures of the little pumpkin!

Kate

New Home and New Hospital

Hey Everyone! I know it has been a few weeks since we've updated Mary's Blog. We've been in the middle of moving to Charlottesville, Virginia. Ryan drove last Thursday to meet the movers on Friday at the new house, and then flew back Saturday to drive with Kate and Mary on Monday. We made the trip in one day and Mary did great in the car. When we got here we all got a little bit congested, like we were waking up in the morning congested. We don't know if it is from allergies or from a little bug, but Mary is definitely taking it the hardest. She has had a lot of mucus and secretions the last few mornings and throughout the day and this morning after her morning treatment and feeding she had a little crash. Her oxygen saturation dropped to 82% so daddy put supplemental oxygen into her BiPap, but that only helped a little and she was having a lot of trouble breathing so we had to call the ambulance to come and take her to the hospital. That was very scary for us, since it is the first time we had to do that and in a new place and all. But the ambulance crew was great and after a scary ride to the ER (her sats dropped to low 60's on the trip) we got her there an they got a large mucus plug out of her at the hospital. After that she got rapidly better and we are just in the ICU now for monitoring. She tested negative for flu and RSV so we are hoping it is something that will pass quickly and we can go home.

Please continue to keep little Mary in you prayers and we know you all do! We are looking forward to her race in May and hope to raise lots of money and awareness for Families of SMA.
Hope to see some of you there!!

Ryan and Kate

Mary would like to announce . . .

. . . that she is going to be a BIG SISTER!!!
I know many of you who read this blog already know this, but Mary wanted to make it official and tell everyone the big news! Yes, we are expecting a little boy in July!
The other big news is that we are all moving to Virginia in a few weeks! Yep, we sold the house and we are moving to Virginia so Ryan can start graduate school at UVA.

Mary also wanted to show off her new boots! (Actually they are daddy's)
Don't we look alike?

We hope everybody has a great weekend!!! Check back for more Mary news!

Happy Easter!!

Mary had a great Easter! She had a visit from her cousins Reagan and Alexander, their dog Bailey and parents, Ross and Jenn. I'm attaching some pictures from the visit.

Getting ready for the Easter Egg Hunt!!

Mary found an Egg!

Putting an egg in the basket!!

Decorating Eggs!!

All dressed up for church!!

Wonderful Weather!

Sorry that this is the first update in a while, we have been VERY busy. I wanted to catch up on sharing some pictures.
This picture is of a hiking trip we did on the Ashland City, TN greenway. It was a beautiful day, 70 degrees and sunny! Mary had a really good time.
Here Mary is just hanging out with Dad wearing Mommy's sunglasses, looking cool! (Mary, not dad)
A few days later, we got about 6 inches of snow overnight. Mary and Sam went out to play with the neighbor kids who were building a snow fort. Here our neighbor Joey is holding Mary. How do you like the look she is giving him??
Sam really enjoyed eating the snow!!

As you can see, both Mary and Sam had a really good time!!

MARY IS ONE YEAR OLD!! Mary turned one on February 28 - what a GREAT day! She had a wonderful birthday party with her friends last Saturday and she sure got spoiled. Thank you to everyone who sent her well wishes for her birthday. We've included a few pictures of her special day!

Mary loved her balloons that Uncle Ross, Auntie Jenn, Reagan and Alexander sent!




She had a great time playing outside with her friends and loved the balloon release!







Here is a picture of her butterfly cake. Her party was all butterfly themed! Thanks Kathryn for helping with the cake!!










As you can see she really cleaned up!! Mary had a great birthday and was spoiled just like she wanted it! Thank you to everyone!










Mary will be starting speech therapy this Friday. She says a lot and likes to have conversations with Daddy - especially in the evenings. She continues to smile and bring us joy every day. We love her so much! She is also very excited to get back to swimming next week! We are so proud of her and are so happy she is such a big girl - we can't call her a baby anymore!!

Snow Angel!!!

Last night we got several inches of snow!! (OK, for you folks in Minnesota, maybe not several inches, but more like 2!!! So really not much to you!!) But for us here in Tennessee that is a BIG DEAL!!! Anyway, Mary really liked the snow! She went out with mommy when the big flakes were coming down and she squealed with delight!!! Here are a few pictures of Mary making Snow Angels. Supposedly there are some pictures of Kate when she was a little girl, that look a lot like this, if I can get my hands on them, I will post them here for all to enjoy!!!




Looks like fun, eh?

Fun, Fun, Fun

Hi everyone!! I know it's been a while since we've updated the blog - we've been very busy with learning Mary's new feedings, putting our house on the market, planning for Mary's upcoming birthday and getting ready for Ryan's change of command. After next week things should settle down a bit!

Mary had a very fun day yesterday playing with her dear friend Emma. They shared toys, laughed, played with Sam and watched a movie together!

Emma was very concerned with Mary's hair and wanted it to look just right for any pictures!

She's a stylist at heart!!

We will be posting more next week as we have a very busy week with lots of excitement. We hope everyone is doing well and please continue to pray for all the children in the hospital and who are not feeling well - we hope everyone gets better soon!!

Mary's First Haircut!!

So if you've been logging on to Mary's blog in the past few weeks, you've probably noticed that here hair has been getting a tad bit unruly!
Here are some excellent examples of Mary's wild hair!
Here she is with all of her Valentine's day cards! Look at those sideburns!!!!








And here is a cute picture of her in her "Daddy Loves Me" shirt. Notice the uneven bangs?

















And look at this one!!!! Woah, someone is in need of a makeover!!!













Here is a BEFORE picture of Mary getting ready for her haircut!
















Here is a picture of her getting her haircut, she wasn't too happy!












And here is an AFTER picture: She looks MUCH cuter, eh?

Mary is Home!!!!

Great News . . . Mary got to come home from the hospital on Sunday afternoon!!
She was SO excited she smiled the WHOLE ride home from the hospital. Then later that night, Sam and Copper came home from visiting Katie, Emma, and Eloise. Mary was SO excited to see her dog Sam, she giggled with delight!! Mary got a bunch of valentines from her friends. Here is a picture of her with all of the valentines she received. She had fun opening all of the valentines with Mommy and Daddy.
Mom and Dad are trying to adjust to Mary's new feeding schedule. It seems like all we do now is feed her. But we are glad the Mary got her G-tube and made it through the surgery OK. Thanks again to all of you who have been praying for her.
The latest news is Ryan's unit is planning a huge SMA fundraiser in Mary's honor!! It is going to be a 5K/10K run/walk and a 25 and 50 mile bike race. We are still working out the date and most of the details, but it will probably be in April. We will post more details as soon as they are known!

Possibly going home tomorrow!

Ok, we don't want to jinx anything, but the doctors told us today that Mary should go home tomorrow sometime. She has been feeling great and is now back to full feeds through her new G-tube. She still has a little bit of crud in her lungs, but we are working very hard to get it all cleared out. Mary's grandmother, Martha just arrived here from Michigan so when she wakes up from her nap, she will be excited to see her. That is all we know right now. Just wanted to send a quick update, because I know lots of people are wondering how she is doing.

Mary Feels Better!!!

We are SO happy to report that Mary feels much better today!!! We did her chest percussion and cough treatments every 3 hours all through the night last night and it really helped!! She actually came off of oxygen at 1:00 am this morning and has been off ever since. This morning when she woke up we actually took her off the BiPap for over an hour and she maintained her O2 Saturation between 97-100%!!!! Yeah Mary!!!

Mary also got a very special gift from a special friend of hers, Stella!! Her mom is Sarah and they have been such a big help to Kate and I during this whole process. Having gone though a lot of the stuff Mary is going through right now, it is great to be able to call them at any time and ask questions. Thank you guys SO much. Here is a picture of Mary with the Bear and Balloon that Stella and Sarah sent.

In the other picture you can see that Mary is feeling much MUCH better. She was smiling at her nurse Robin, who was her nurse in the PCCU the last time we were here in December. You can also see her little Mic-key button, it is the thing in the middle of her tummy with the tube coming out of it. Hope you enjoy the pictures and pray that Mary continues to feel better!

Ryan

P.S. We also just had a visit from Jack, who is Connor's dad. Conner is Mary's friend who is 7 and has SMA Type 1. Jack was in Nashville for business so he stopped by to see Mary and bring us some lunch. That was SO nice of him!

Mary Update & CHALLENGE!!

Hey everybody! We wanted to update you all on Mary, I know lots of people have been checking in to see how she is doing, sorry if we don't get a chance to return calls or e-mails right away. We stay pretty busy doing her treatments and arguing with doctors. . . long story from today. Anyway, Mary is still on her BiPAP with some oxygen full time. We are trying to wean her off of it, but the doctors are reluctant because her right lung is still showing some collapse on the x-ray and she isn't really moving air through it very well. We have stepped up her compression and cough treatments to every 3 hours, which is good. Unfortunately we had to convince the doctors to let us do that as well, but it is really what she needs.
We also had to move her IV from her leg up to her wrist because her leg was getting very swollen from the IV nutrition going in for so long. So we pray that the vein in her wrist will be strong enough.
They started feeding her a little Pedialite through her G-tube today, but decided to wait until tomorrow to do anymore.
Lastly, we weren't able to get a sleep room tonight, so Kate and I will be taking turns napping on the fold out chair in Mary's room. Oh, its going to be another long night.

SO . . . now for the challenge!
Ok, so there is this cool site where you can send an e-card to Mary in the hospital. The really cool part about it is, you send an e-card, but the hospital actually prints it out so we have hang it on her door. So the challenge is . . . we want to COVER Mary's door with them!!!
So her is the link to the site:
http://staging-new.vanderbiltchildrens.com/interior.php?mid=1985

The directions are pretty self-explanatory. But you will need the following information:
Patient’s name: Mary N (fill in the full last name if you know it, most of you do)
Room Number: 5525

Thanks again and keep up the prayers! It is amazing how people all over the world are praying for Mary!