Cheerleader Mary!

Last weekend Mary got the opportunity to go and watch our neighbor, Nathaniel play in his Lacrosse game. Mary was VERY excited about this because she just loves Nathaniel. It was a very nice day and Mary had SO much fun. She kept saying "Nathaniel plays ball" and during the big plays she would yell "Go-oooo Nathaniel!!, Go!!!!" She even memorized his jersey number, so when you ask her what Nathaniel's number is, she'll say: "Four" It is SO cute. Anyway, here are some pictures from the game:
Nathaniel plays goalie:


A picture of Mary cheering:


Mary holding her ball:


Mary and Nathaniel after the big win! She is SO proud!

Mary's 25th Month Birthday

Mary celebrated her 25 month birthday yesterday! It was rainy all day, so we only went outside to get the mail :-( Mary also had a rough night, she desatted into the low 80's several times, but we aren't really sure why. We got her up during the night to do a treatment, but it didn't really seem to help. We think it may have been gas related, but who knows. . .

Here is a picture of the Finding Nemo cake that daddy made:


And here is a video of Mary blowing our her candle:

The Zoo!! (Blog Catch Up)

A few weeks ago, (before Mary went into the hospital) we took the kids to visit a nearby zoo. It was a little roadside zoo, called the Luray Zoo (in Luray, VA). It was a little scary, but it had some pretty cool animals and you could get VERY close to them, so that was neat for the kids.
This is the sign as you enter the zoo!

Getting ready to go in:

This zoo had one of the most impressive reptile collections I've ever seen! The snakes we all very active (must have been feeding time), usually you see snakes just coiled up in the corner. Mary liked the snakes!

Yes, they ACTUALLY has a Domestic House Cat on display! We thought this was HILARIOUS!

Here was their other cat:

It was a huge Bengal Tiger. Mary thought it was the coolest. When it would go into it's cage, Mary would say: "Tiger, where are you????"

Kate being silly:

Kate, Mary and Jackson:

Mary says 'hi' to a little goat.

When Mary saw the donkey, she said "Hi Eeyore!"

Mary also LOVED the porcupine. (I think she watches too much "My Friends Tigger and Pooh"!!!

Jackson feeling right at home with the Monkeys!!!

Getting ready to leave, everyone had a good time!!

Mary looking cool in her shades! When we got back out to the parking lot she said, "Dadda, I want to go home"

Mary "eating" an Apple!

Tonight Mary decided she just HAD to “eat” an apple (total stall tactic for going to bed). She just came up with this out of the blue tonight and it was pretty cute! Of course, we took a video of it with our new camera! You can watch it below….

Mary Home from Hospital!!

Mary is home from the hospital and doing much better! Sorry it took so long to post this, we actually came home Saturday night, we've just been extremely busy with school and preparing for our move since then.
Mary was very excited to get home to Jackson and Sam. She kept asking in the hospital, "can I pleeeeeease go home dada? pleeeeease?" It was so heartbreaking to tell her no, we had to stay one more night. Finally on Saturday we decided that she was doing well enough to come home and that we could manage it from home. We've continued to do chest PT treatments on her around the clock, but we've been able to extend the time between them, from every 3 hours, to every four, and now we are down to just 4-5 treatments a day. It was just so hard to wake Mary up in the middle of the night and do a treatment on her, she would look at you like, "why are you waking me up, I was sleeping SO good!"
Another bit of exciting news, we were able to get a loaner "chest-vest" from the Manufacturer to use at home for Mary. We've been trying to get this for a long time, but it has been denied by insurance. We are in the process of appealing it, but since we used it in the hospital, Kate called the company and asked to borrow one and they said "OK". Mary is starting to get used to it, it is a little scary at first, but it works really well for her. It is hard to believe that such a simple machine costs over $15,000!!!

Anyway, we are all glad to be home. Especially Mary! Here is a picture of her after her bath the day after we got home:

Just look at that smile!!

Mary takes a little turn for the worse

Well, we thought Mary was on the road to recovery, and hopefully she still is, but tonight when we put her to bed she started desatting into the 80's. I listened to her lungs and I could hear all sorts of junk rumbling around in there. So we called a respiratory therapist and she said yeah, she definitely has something in there. She deep-suctioned her lung and got a bunch of loose secretions out. They were not as thick as a few days ago, so that is good. But there was a lot in there, so that is a little scary. After a few more suctions, and some turning, and about an hour we finally got her settled back down and she went to sleep, but she isn't resting like she had been. She has a lot of gas in her tummy, her sats are 1-2% lower and her heart rate is 20-25 bpm higher than last night.

So we will keep watching her and keep doing the treatments every 3 hours. Its going to be a long night. . . .

Mary doing better!

Thanks to everyone for all the well wishes and prayers! Mary is doing much better as of yesterday. Her x-ray looked amazingly clearer compared to when she first came in. She still has some atelectisis in both of her lungs, but she is tolerating some time off of Bipap. She got to go to an amazing Train party yesterday with a cool Tennessee theme, which was awesome, since that is where Mary was born. They had the Chattanooga Choo Choo, a bluegrass band, the Grand Ole Opry, Graceland and more! Mary got to do crafts, she made a guitar, a horse and a bowl made out of an old "45" record. It was really cool. Mary had a blast! This morning she woke up and said, "lets go to train party!"

If you would like to send Mary an e-card here is the link:
https://www.healthsystem.virginia.edu/internet/e-cards/choose/home.cfm
Her room number is: 7189

Thanks again for all of the prayers, we know that Mary is in God's caring hands and only a miracle could have cleared her lung so quickly. All of the doctors and respiratory therapists were amazed!

Mary in PICU

Mary went into severe respiratory distress yesterday morning, Kate and our nurse, Donna worked on her at the house for about 45 minutes but just couldn't keep her heart rate and saturations up, so they called the ambulance. There was a scary ride to the ER, thinking they might have to intubate her on the way. But luckily we didn't have to intubate her and we were able to wean her off oxygen and onto her Bipap. Her right lung is completely clouded with pneumonia. We have been doing treatments every 2 hours through the night and all day long, which is a little draining on Mary and on us, but very necessary.
Mary is doing much better this morning and her spirits are good. Last night she kept saying, "can I go home, please dada please..." It was so sad.
Anyway, we are hoping to not be here too long. Please keep her in your prayers!

My Review of Hands-Free Tie-Clip Omnidirectional Electret

Radio Shack

Keep your hands free while wearing this tie-clip, omnidirectional electret, which comes complete with 3.3 feet of cord and a “357” button battery.

Hands-Free Tie-Clip Omnidirectional Electret

Great sound quality from a tiny micropho

rugr www.miracleformary.com 3/13/2009

 

4 5

Pros: Lightweight, Great Sound Quality, Simple Use

Cons: Flimsy

Describe Yourself: Parent

Primary use: Personal

We use this tiny microphone in conjunction with the Mini Audio Amplifier to amplify our daughter's voice. She has a disease that makes her breath support very weak, and therefore she is very quiet. It is very portable and we take it everywhere. It works great so we can hear her in noisy situations!
Only bad thing, the plastic tie clip broke after about a week of use, so I just replaced it with a balloon clip (see picture)

my 2y.o. dauther using the microphone w/ chip clip

: Using Product

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