Mary's Blog

Everyday Miracles

2011-12-08T16:29:00.001-05:00

Have you ever witnessed a miracle happen right before your eyes?

This past week, Mary has been in University Hospital, in Newark, NJ, battling RSV. Things took a down turn last Thursday when Mary's lungs filled up with fluid, but Kate and I, not knowing she had RSV thought we could manage it from home, as we often do when Mary has a cold. By 10:00pm on Friday, after near constant treatments for over 24 hours, Kate and I decided we could no longer manage it from home and it was time to go to the hospital. Soon after getting here, and receiving the positive RSV test results, Mary's mucous started to increase even more and get very sticky and THICK! Thank goodness for the amazing RT's here at UMDNJ, who are so skilled at deep suctioning and using the cough machine. Mary kind of started to improve, or at least stabilize, so it seemed. Then, by Tuesday evening, Mary lungs were SO full of THICK, STICKY mucous, we just couldn't maintain her O2 sats above 90, even while on 5 liters of supplemental O2. I was certain we would have to intubate to get her over the illness. Then, 7:00 am shift change rolled around, and in walks Heron, a 6'2", barrel chested, Respiratory Therapist from China. A bit of relief came over me, as Heron has helped Mary several times in the past. Heron, who happens to be an orthopedic surgeon in his home country, walked in the room, took one look at the sats (90% on 5 liters O2) and said with his Chinese accent, "Ryan, take her mask off and bag her, I do my best suction now, clear out lung..." So, I took the mask off....alarms started to sound...bipap-beep, beep, beep, Pulse Ox-Ding! Ding! Ding!, and Heron began to suction..... her numbers continued to drop...O2 80%, HR 118, and her lips went from pink to grey to pale-white as the numbers continued down, O2 70%, HR 90, finally, I insisted that I cough Mary, because I didn't want to see her heart rate drop any lower. So I coughed Mary with the catheter still in her nose, and thick mucous came bubbling out of her mouth as her eyes came back to life and color started to come back to her face. During this whole process, instead of being worried, I had a eerie since of comfort and the utmost faith in Heron and what he was doing. Soon, as I saw the thick yellow and GREEN mucous start to slowly flow from Mary's lungs into the suction catheter, I felt as if I was watching a MIRACLE take place, right before my eyes. The mucous flowed and flowed, slowly and steadily filling the entire suction tubing as Mary's numbers steadily rose up into the high 90's. I absolutely knew that had Heron not cleared her lungs at that moment, we would have to intubate. Heron returned every 2 hours that day to do the same procedure, each time clearing the mucous that had accumulated in her lungs. And after each treatment, Mary would be completely wiped out; exhausted, but we all (including Mary) knew, this is what it would take to get us through the next few days and avoid "the tube" as Mary would put it. That evening and the following day was more of the same, and again we were thankful to have Heron on duty.

Finally, last night Mary (and mom and dad) got a good night's rest and slept 5 hours straight without having to do a treatment.

To the SMA families in the northeast who are hesitant to come to UMDNJ (Yes, the hospital where Dr. Bach practices) because it is in Newark, or you've heard horror stories (we did), or whatever. I urge you to keep an open mind. We've found the care here to be amazing. In our opinion, nobody knows how to treat SMA (especially Type 1) patients better than this hospital. Sure, it is in a bad part of town, and there aren't "comfy beds" or flat screen TVs on the wall, but the CARE here is FIRST RATE, and isn't that what you come to a hospital for anyway??

Lastly, please say a prayer for all of the sick SMA kiddos out there. There are way too many not feeling well right now. Also, say a prayer for the SMA Queen herself, MJ and she prepares for surgery tomorrow.

Mary Back in the Hospital

2011-12-03T21:50:00.001-05:00

Hello! Wanted to get a quick update to everyone who reads Mary's Blog regularly.... unfortunately, Mary is back in the hospital again, after a visit in October with Influenza B (yes, we all had flu shots over 5 weeks before that). This time, she has RSV(Respiratory syncytial virus)!!!
Mary had been battling what we thought was a little cold since last Tuesday, and we were managing it well from home, then on Thursday, she appeared to be over it, wanting to spend the entire afternoon off her biPap, no fever, normal O2 sats and HR. Then, Thursday night, we awoke to alarms going off, Mary was de-satting, and was filled up with "junk" again in her lungs. We continued to battle from home, but we quickly realized that this had to potential to exceed our "at home" threshold. After talking with several of Mary's doctors throughout the day on Friday we made the decision to keep Mary at home for at least another night. Well, shortly after we finished a thorough treatment, we put Mary in bed for the night. I decided to stay in Mary's room and study, so that I could watch her numbers and suction her as needed. No more than 15 minutes after going to bed, she started to desat into the low 90's and essentially nothing we did would bring her numbers up, so we decided to take her to the local ER. Shortly* thereafter we were on the helicopter, once again, enroute to Newark.

Needless to say, Mary had a very rough night, she was exhausted, dehydrated, and generally feeling bad, she remained on supplemental O2 throughout the night. At a few points we were fearful of yet another intubation. But thankfully we were able to clear her lungs and avoid that (knock on wood).
Mary had a much better day today, but as many know with RSV and SMA, we are not out of the woods yet.

Please continue to pray for Mary, and for Kate and I, and Mary's wonderful doctors, nurses, and therapists, to have the strength and direction to fight this illness.

Also, a special thanks goes to our nanny, Shelby for getting all of Mary's equipment packed up while we were at the ER and helping out with Jackson until my mom, Julie could fly in tonight to help out.

Hiking Black Rock Forrest Waterfall

2011-11-12T14:40:00.001-05:00

We took advantage of the beautiful fall weather and hiked to a pretty neat waterfall near our house. The kids had a blast! Here are some pictures of the adventure:

Kate and Jackson at the Trailhead.

Mary and Jackson ready to hike!

Taking a break!

Mary taking pictures of us!

The first glimpse of the waterfall!!

Mary and Daddy!

Jackson joins in!!

The whole family!

That water looks cold!!

Mommy carrying Mary.

Mommy holding Mary, they had a great time!!

A better day.....

2011-10-25T19:50:00.000-04:00

Mary is feeling much better today, we were able to wean her down to room air (21% O2) yesterday and she stayed on it through the night. The plan is to extubate (pull the breathing tube out) tomorrow (Wednesday). Mary is in good spirits and was happy to have a few visitors today, her nanny, Shelby and one of her nurses, Lisa. She was also able to Skype with her brother, Jackson last night, and with her aunt, Angie (in Ukraine) and he uncle, Bill, (in Texas) today. She doesn't care to Skype right now, because she can't talk with the tube in her mouth, but she was happy to see the familiar faces.

Please pray that the extubation goes well and we can get home before Halloween!

FLU + SMA = NOT a good combination

2011-10-23T23:34:00.000-04:00

Hello all! So Mary and Jackson had been sailing along this fall, both growing like weeds, and going (back) to pre-school. Kate and I were feeling very fortunate because both of the kids have been very healthy until this week. Mary and Jackson even had a minor cold or two that we were able to manage well from home for Mary (this is a good thing). So we were very surprised on Wednesday when Mary started having more secretions, because nobody in the house had been sick and we've really been limiting our exposure to sick people. We had even decided to pull Mary out of school and begin home-school at beginning of last week, because so many kids in her class had been sick.

So by Wednesday night/Thursday morning, Mary woke us up, crying, needing suction and desaurating. At first, we didn't think it was too big of a deal, given her past 2 colds were pretty light. We immediately stated increasing her BiPap pressures, and treatments to keep her lungs clear. On Thursday, we decided to take Mary to the local Army hospital to get a chest x-ray and see what was going on in there. On the way to get the x-ray, Mary desaturated in the van, we raced to the hospital and were able to get the x-ray, but then headed immediately to the ER. They were great, aleady knew we were on our way. We were able to stabilize Mary, but we releaized that we might be dealing with more than just a light cold. The ER staff decided to transport Mary via helicopter to UMDNJ in Newark. She was probably stable enough to transport via ground Ambulance, but given it was approaching rush hour out of NYC on a Thursday, it would have turned an 1 hour ambulance ride into several hours.

When we got to the hospital, we found out Mary has Influenza A. We continued to do aggressive airway clearance, but we just weren't getting that much out of her lungs. However, we could tell that there was still mucus in her airway, because we could hear it, and her O2 SATS weren't that great, even after treatment. Mary's mucus (from the flu) is very think and sticky and we've had a very hard time getting it completely out of her lungs and upper respiratory tract. This sticky mucus caused her to desaturate last night, even while bleeding 100% O2 into her ventillator, we tried to clear her all night long, but finally this morning we had to make the decision to intubate her, to give her body, lungs, and nostrils a break from hours of continuous coughing and suctioning.

The intubation went fine, but she has still be having some trouble with low O2 saturations, so she had been on 60-80% O2 all day. But she is resting comfortably now, and thankfully there is no pneumonia in her lungs.

Please keep up the prayers for Mary!

Mary Returns to School!!!

2011-09-13T14:08:00.000-04:00

So Mary started back to pre-school for the 3rd year in a row!! Yes, she is absolutely ready for Kindergarten, but since she isn't 5, she gets another year of pre-K. I think Mary could probably teach the class!! This picture is actually of Jackson's first day of preschool, but it was so cute, I couldn't resist posting it!!

A picture of Mary with her class out of the Nature Observation Deck!

Mary and her friend Aoife!

Mary doing some fishing for letters during OT out on the playground...

Mary is the new JennSwing with Aoife pushing her!

Mary riding on the school bus at the new playground, she loves it!

Driving the bus!!

One very happy girl!!!!

Mary Turns 4 and 1/2!!!

2011-08-28T13:12:00.000-04:00

Mary turned a big four and a half on the 28th!!! Mary said she wanted a dragonfly cake and she wanted to help make it, so here are some pictures of her and Jackson helping decorate the cake.

Notice the flashlight in the picture as we were preparing for "Hurricane Irene" which really just turned out to be a tropical storm.

The finished product:

Big SMILES!!!

Jackson wants to help blow out the candle...

I love this picture of Mary getting ready to take a bite of cake!!

Finally a picture of the whole family!!

On Bull Pond . . .

2011-06-12T14:54:00.000-04:00

So it is mid-June and it has been SO long since we've updated Mary's blog or the website, www.miracleformary.com, so he is a quick update!

Mary has been extremely busy this summer! She started off the summer by playing baseball! Her team is the Pirates and Mary was super excited to get started. For the opening day, Kate and I had decided not to take Mary in her Powerchair, because we wanted to get a feel for things... well, Mary woke up that morning and said, "I get to play in my powerchair, right?" She was determined to do it, and we all know that when Mary is determined to do anything, there is no changing her mind!!! So, she got her way:

The summer, we've also had lots of trips to the zoo and spent many days in the backyard, swinging and playing in our new pool!

This past weekend, Mary's Grandparents came in from Michigan and her cousins came all the way from TEXAS to join us at the lake cabin we had rented. Here are some of our favorite pictures from the weekend:

Visiting the Rifton Factory!

2011-03-09T23:40:00.000-05:00

Since Mary started school over a year ago, we've been searching for a suitable seating system that will allow Mary to sit up in the classroom and be able to interact with her peers and do her schoolwork. We needed something that can offer Mary enough support in both the head and trunk to allow her to sit upright, but at the same time allow her to recline if she starts to have respiratory trouble.

As you can imagine, this is no small task... there are many chairs out there, but few of them meet the specific needs of an SMA Type 1 child. Many kudos to my wife Kate for not giving up the search, despite many roadblocks along the way. Recently, one of our physical therapists at Inspire, named Debbie Engle recommended we contact a seating specialist named Jean Minkel, who suggested we look into the Rifton Activity Chair for Mary. Kate made contact with Rifton (www.rifton.com) which specializes in adaptive equipment for children and adults. It turns out that the company is located less than an hour from our house!!! So, they invited us up to let Mary see the chairs being built and to try one on for size...

From Rifton

Well, Mary did great in the Rifton Activity Chair and loved meeting the friendly people at the factory!

Here is a video of the chair:

Here are some pictures of Mary in the chair:

From Rifton

Here is a picture of Kate, Mary and I with the Physical Therapist and one of the VP's of the company.

From Rifton

As a mechanical engineer, it was a treat for me to see all of this amazing equipment being designed, built, and assembled on-site by amazing dedicated and talented workers.

We were all blown away by the kindness and generosity of the people at Rifton and in turn the workers at the factory were very excited to see someone like Mary using one of the products they've worked so hard to design and build. At the end of our visit, they offered to let Mary to take chair that she tried home!! Again, we were absolutely blown away!!

Thanks to Joe, Deborah and everyone at Rifton for your kindness and generosity!

Daddy Daughter Dance!!!

2011-03-06T16:23:00.000-05:00

Daddy asked Mary to go to a daddy-daughter dance with him! Of course it takes a lot of prep work to get a girl ready for a big date like this...

Mommy got to do Mary's nails!

Smile Mary!

Beautiful Nails!

Jackson helped Mary make some homemade pizza!

Of Course a girl can't dance on an empty stomach!

All dolled up!

Ready to go!

All dressed up!

On the way into the Dance! Mommy had to say goodbye...

The first friend we saw was Josie!

Dancing the night away!

It was very hot in there! Look at the sweat on Daddy's forehead!

Mary dancing with Hannah!

Of course Jackson, not to be outdone, had to get fancied up as well!!!

Mary and Daddy had a wonderful time and made memories that will last forever! Mary said she was a little disappointed they didn't play Hannah Montana or Robbie Ray music, but she said they did play Katie Perry which she thought "was a little inappropriate for little girls..." Oh how her wonderful mind works!!!

Mary Turns 4!!!!

2011-02-28T23:46:00.004-05:00

Today our little miracle girl turned 4 years old!! We are so proud of all of her accomplishments and look forward to all of the amazing things that Mary will do in her lifetime.
Mary had a Dragonfly party (sticking with the bug theme. . . butterflies, age 1, ladybugs, age 2, bees, age 3) and she was lucky enough to have lots of family and friend there to help her celebrate.

Mary's Great Grandma Dorothy and Grandmother Julie flew in from Minnesota, and her Grandpa Bill and Grandma Martha drove in from Michigan. Of course her favorite Great Aunt Danielle "Nellie" came up from NYC as well!

Mary also got a special surprise of her Grandma Martha playing "Happy Birthday to You" on her violin during her party. You should have seen Mary and all the other kids faces light up when she started playing! (I didn't get any pictures of that)

It was a great weekend and Mary really enjoyed having all of her friends over for the party and having family in town. It culminated today when see shared cupcakes with her class at school. After that, she took a well deserved 2-hour nap!

Kate to run the NYC 1/2 Marathon to help raise funds for SMA research!

2011-01-19T23:32:00.000-05:00

After running my first half marathon last year I decided to run another one…this one with a higher purpose – to raise money for SMA Research through Families of SMA! And, I have decided to ask my friends and family help me reach my donation goal of $1,000!

Here is the deal:
Step 1. YOU donate some money. (Donate at: http://www.fsma.org/LWC/KateNelson5779)
Step 2. I will run the NYC 1/2 Marathon on March 20th - only 13.1 Miles.
Step 3. Together we raise awareness and support for SMA.
Yep, it is that easy!

Raising money for the Families of SMA is important to me because my daughter has this terrible disease and I want to see a cure found and the end of children losing their life way too soon! Mary is a happy, bright, intelligent three year old who loves life, loves to laugh, and loves to tell a good joke! I feel like this is the least I can do to help find a cure for a disease she battles every day! She is my pride and joy and I would go to the moon and back for her! I am sure you will agree that helping me reach my goal is totally worth it!
Donating through this website is easy, fast, and totally secure. This is also the most effective way to support my fundraising efforts for Families of Spinal Muscular Atrophy.
Spinal Muscular Atrophy (SMA) is the number one genetic killer of infants. It is an often fatal disease that destroys the nerves controlling voluntary movement, such as, crawling, walking, head and neck control, even swallowing. One in 6,000 babies born is affected with SMA. There are 7.5 million Americans that carry the gene that causes SMA.
Families of SMA makes a difference every day because of your support. Together, in 2011, we will accomplish the following: -Expand our investment in critical Spinal Muscular Atrophy research to grow the drug and clinical pipeline to increase our likelihood of finding a treatment and cure.
-Provide direct support to hundreds of families with newly diagnosed children by sending them packets of important information and pieces of critical equipment.
-Provide services to more than 70% of SMA families in the United States.
-Host the nation's largest gathering of those affected by SMA and the researchers working towards a cure at the 2010 Annual SMA Conference, bringing together hundreds of families and researchers from around the world to share ideas and hope for the future.

If you encounter a problem with a link, please visit my The 2011 NYC Half Marathon Home Page at http://www.fsma.org/LWC/KateNelson5779 NOTE: If link looks broken, cut and paste ENTIRE link into address bar. If you are presented with a "Find A Fund-raiser" page, enter my first and last name and click on "Submit". Then click "View Fund-raiser" by my name in the results list to go to "My The 2011 NYC Half Marathon Home Page."

Thank you,
Kate

Mary home and doing well!

2011-01-04T22:42:00.001-05:00

Hi everybody!! I am so sorry for not updating Mary's blog! Mary was able to come home from the hospital a few days before Christmas! We have been home and she has been doing ok. We didn't even realize the blog still said she was in the hospital until Mary's teacher was surprised to see her in school on Monday!
Mary is still fighting this cold and has a lot of secretions at night, basically we have to suction her every 30 minutes to one hour throughout the night, so we don't get much sleep.
Please pray that everyone continues to stay healthy!

Thanks to everyone for the Christmas cards and well wishes while we were in the hospital!

Back in Newark

2010-12-20T08:04:00.001-05:00

So it has been just over a month since our last blog post. Reading it, I just noticed I kind of left everyone hanging.... Sorry about that. We are back at UMDNJ hospital in Newark, NJ. It seems our little Mary just can't catch a break. Jackson had a little cold all last week, mostly just a really runny nose, and despite our best efforts to keep the two apart, when you are home alone with a 2 year old, trying to take care of a 3 year old with SMA, it becomes impossible. So Mary finally came down with Jackson's cold sometime last Thursday. Ryan stayed home from work and we worked very hard to keep Mary cleared out, and stay ahead of the secretions, but they just became overwhelming and we were having to use lots of oxygen at home to keep her sats up so that is kind of our cue to start moving toward the hospital. At 4:00 am on Friday we packed up the van and headed to Keller, leaving Jackson sleeping in bed with our neighbor at the house. soon Ryan an Mary were in a helicopter on the way to university hospital. This time the helicopter started and we got there with no issues.
Mary had been pretty stable through the weekend and we were going to discharge yesterday, we had the van all packed up, but before we left we wanted to do another treatment to get her good and cleaned out before we got on the road. Following her treatment, she started desatting into the low 70's. We brought the RT in and did a lot of NT Suctioning and just kept getting more and more secretions. We decided to stay another night. Tonight, we've had more of the same, Mary has been very wheezy, so we have been using pulmozime and albuterol. Following her treatment at 2:00 am, we spent about 2 hours cleaning her out and almost filled a suction canister. We just did the same thing at the 6 am treatment. The RT says this is similar to the level of secretions he sees with RSV. Her rapid RSV came back negative, but we are supposed to get the respiratory panel back today. The doctor suggested that it could possibly be MPV.
Anyway, we are unable to get Mary completely cleaned out, she is still on her bipap, (LTV 950) we have her on 1 liter of O2 to keep her sats above 95.

Ryan and Kate

More Seizures....

2010-11-07T11:34:00.000-05:00

So once again we were making plans to leave the hospital, they were talking either tomorrow or Tuesday, but then Mary had 2 more small, "localized" siezures this morning. So we are going to finally do a 24 hour EEG. We have asked for this twice before, and had they done it, we would have certainly caught one of these many seizures on EEG and video. We are a little frustrated by that....
They are also going to up the dose of VPA a little quicker to try to control the seizures. We also got them to start the L-carnitine, based on Dr. Swoboda's recommendations.

More to follow...

Mary update

2010-11-06T23:34:00.000-04:00

Mary was extubated today, despite having another seizure last night. Ryan even got to pull the tube out, which Mary was very excited about, but I think Ryan was even more excited! She has been doing well all day, keeping her O2 sats at 99-100 on room air both on and off bipap. She has had more secretions than normal, probably because of the irritaion from the tube. Her speech has taken a little longer to come back, but her voice is becoming more understandable. It sounds like she is talking with a very sore throat.

Mary is in good spirits and has been asking when we can get out of the hospital. The sweetest moment of the night....
Mary and Kate were talking about the events of last Saturday night and Mary said out of the blue "Mommy, I forgive you" and then she said "daddy, I forgive you too". This totally caught us off guard and we didn't really know what to say. We just gave her a big hug and tried to hold back the tears. It is really amazing how deep and absolutely amazing Mary's mind is!

We love that little girl!

Nervous Anticipation

2010-11-05T22:04:00.002-04:00

First, thanks to EVERYONE who sent videos! Mary absolutely loves watching them! You should see her face light up and her smile (even with a tube in her mouth!!) when she watches them. She likes to show them off to the nurses and doctors when they come in.

Another fun moment tonight, Mary called her little brother Jackson and put him on speakerphone, we sung the "I wanna ride on a fire truck" with him. Both he and Mary really enjoyed singing it and Mary really liked hearing from her brother, she especially liked it when he said "I wove you Mimi!" (picture a 2 year old talking). I wish this hospital had wifi, I would love to see them Skype with each other!

OK, so now for the update: the plan is to extubate around 10:00 tomorrow. Kate and I are a little bit nervous, because of what happened last time we exutbated with the seizures, and the risk of them happening again. However we are very hopeful that they will not return. Mary is definitely ready to get the tube out, it seemed to really be bothering her today and she even told us that is was hurting her, which is unusual for Mary. She is such a strong little girl.

So our request for tonight is that everyone continue to pray for Mary (we know you will). But specifically pray for her strength tomorrow during the procedure and pray for her to remain seizure free, pray for her lungs to remain clear once extubated, and pray for her beautiful little voice to return!

Thank you to everyone for your continued support and prayers!

R and K

A video challenge!

2010-11-04T13:04:00.000-04:00

Mary responded so well to a little video that she got from her friend PJ this morning! So we decided to do another challenge! Take a few seconds to shoot a get well video or a fun video for Mary. Then either send it to us at Ryan@miracleformary.com or post it to YouTube and send us the link or post it below. Also let us know if you would like us to share the video in her blog (if you choose the e-mail option).

1, 2, 3, Go!

Another day to give thanks

2010-11-03T20:15:00.000-04:00

Today we are thankful for:

-The millions of prayers that are being said....
-grandmas and grandpas who came to visit....
-the neurologist giving us a glimmer of hope by telling us the swelling should go away and there might not be permanent damage.
-Mary getting LOTS of rest today....
-each other (I LOVE YOU KATE)
-my work, which has been absolutely 100% supportive
-our friends and neighbors who are watching Jackson
-clear lungs....
-no seizure activity on the follow-up EEG

I could go on and on.

The plan right now is to prepare Mary for extubation at 10:00 tomorrow. Everything has to go right tonight and in the morning, but we are praying that she will be ready. Please continue to pray for mary's strength and pray that she will be awake and ready to extubate and breath on her own in the morning.

An Emotional Roller Coaster

2010-11-03T00:20:00.000-04:00

To say the least, the past 72 hours have been an emotional roller coaster, from walking in on a scene from a movie, Mary blue and unresponsive, to a scary ER trip to Keller, to the helicopter not starting, to just a day later, Mary being extubated and acting like her old self again, to making plans to come home this morning, then at around 1030 today, or world seemed like it came crashing down, when Mary started having seizures. All of the fears that we thought we had avoided, because Mary seemed to be acting just fine, came rushing back. Kate and I have both been so overcome by emotion, Uncontrollable crying, etc. As the seizures continued to come throughout the day we feared the worst. Then when the doctors tried to reintubate, and it didn't take and we watched her o2 saturation go to 4, the unthinkable crosses your mind.

Luckily, we do have a lot to be thankful for. . . Great doctors, nurses, and respiratory therapists who were able to reintubate Mary and are continuing to care for her, thankful for the thousands of people who are praying for Mary, thankful for family who rushed to be with her from all over the country, thankful for great friends back at West Point who have taken care of our son, and made trips down with supplies and food.

Mary is finally resting, she had an extremely rough day, to go along with the seizures, her temperature soared to over 102 for several hours, we had to use a cooling blanket to finally bring it down. Her heart rate has been in the 170's or above for most of the night, and has finally started to come down. We are very thankful for that.
We hope that tomorrow mary continues to improve and we get the results from the MRI and hopefully it will help to answer some of the unknown.

Please continue to lift Mary up in prayer to our Heavenly Father.

Mary update 2 November

2010-11-02T14:14:00.000-04:00

So we thought Mary had a good night last night and we were making plans this morning with the doctors to go home tomorrow. However, Mary started having seizures at about 1030 this morning and the have continued. We have done a CT Scan and doing an EEG now. Hopefully MRI later today. We don't have any results yet, but we suspect that the seizures are a result of lack of oxygen to the brain on saturday night, since she has never had seizures before.

PLEASE continue to pray for her full recovery. She is a strong girl and she will make it through this. Just please continue to pray for her and ask all of your friends and neighbors to pray.

Thanks
Ryan and Kate

A Special Visitor!

2010-11-01T07:36:00.000-04:00

Mary received a special visitor yesterday! Her grandma Martha flew in from Michigan to help out with Jackson. It was a big pick me up for Mary to see her grandma! She brought her the brand new Tinkerbell movie, which was great, because Mary wanted to be Tinkerbell for halloween. She has watched it 3 times already!

From Drop Box

Special thanks for Martha for dropping everything and flying in to help out. She is always willing to do so, and we are very grateful.

We would like to ask everyone to keep praying for Mary. The plan is to extubate today as long as things continue to go well.

Mary in UMDNJ hospital again....

2010-10-31T10:55:00.000-04:00

Many of you probably already know, but Mary was emergency intubated last night and taken to the PICU in Newark. (same room # and address as below in blog)
She has been doing really well since her illness last month. She was still on her antibiotic treatment but had been healthy, and back to school, no fever or secretions, etc. So Kate and I decided to go to dinner together, which we haven't done in several months. We stayed local, only a mile from the house, we were done with dinner and going to stop by a friends house on the way home when we saw the fire trucks go racing up our hill. Our babysitter called at the same time and our worst nightmare was realized. We were just a few blocks away, we raced home to a yard full of emergency vehicles. initially the MPs wouldn't let us in the house, because they didn't believe we were the parents, despite all of our neighbors telling them we were. Had to resist the urge to take him out. Litterally.
Walked in mary's room to a bad scene, purple, no pulse ox hooked up, no O2 being used, which it should have been.....

Started bagging, got her up to 100%. Moved to Keller ER (4 blocks away). Anesthesiologist tried to intubated, failed, lots of blood, trama to airway... Got it the second time....ugly. stat flight arrived. We put her in the helicopter, I climbed in front seat, waiting for pilot to crank, ..... Nothing. Dead battery.
Jumped in Ambulance and drove to Newark.

Mary is stable and responding to us now. She is still intubated.

We don't really know what happened last night, because she had been fine. We are both kind of beating out selves up about leaving since we never leave her alone without one of us there.

Please pray for a quick and full recovery.

/r

Goin' Home!

2010-09-19T19:18:00.000-04:00

So if all goes as planned, we should leave the hospital at UMDNJ in the morning. Overall our stay here has been good, the level of care was phenomenal! We have several wonderful doctors, nurses, and respiratory therapists to thank! So to list s few of them.... Drs. Navado, Kaur, Aguilar, and Euginia. . . Nurses, Elsa, Monica, Kate, Binda, Mariama, Violet, and many more...
And RT's, Luis, Richard, Diana, Mark, Ester, and Paul.

Thanks to everyone who send cards, emails and letters and to everyone who made us meals and shuttled Mary's food and our clothes.

Thanks most of all for all of the prayers, for that is what truly brought a quick recovery. We have lots of late nights of treatments ahead of us, so continue to pray for our strength and Mary's healing.

Mary Update and a Special Surprise!

2010-09-17T09:24:00.000-04:00

Mary was successfully extubated at 11:00 am on Wednesday morning, she did very well during the extubation and was quickly put on room air via the ventilator (no supplemental O2). Since then, we have had a few rough nights, with Mary having a few mucus plugs in her upper airway and having desaturations down into the 60's (% O2). Again, this was a little scary for us, because it was very similar to what we were dealing with before Mary was hospitalized. The other problem we are now having is Mary not being able to maintain proper tidal volumes on the ventilator because of leakage, so basically the vent alarms every couple of minutes during the night. So none of us are getting much sleep. We were also moved to a smaller room in the PICU, which is the size of a sardine can, so we are always on top of each other.

On a positive note, we've received literally hundreds of cards and pictures from all over the world! We successfully filled all 3 windows in Mary's old room, and have since moved them all to the new room.

Mary also received a special gift from the Army Hockey Team (special thanks to Cadet Cody Ikkala). Mary got an autographed Army Hockey shirt and hockey stick along with the following video!

Mary thinks the video is awesome and shows it to everyone who comes into her room! I think she has watched it on her iPad over 100 times!

Thanks again for all of the prayers, letters, visits, food, and support!

Praying for a Safe Extubation!

2010-09-15T05:56:00.000-04:00

So the conditions are finally set for Mary to be extubated. This will probably happen around 10:00 this morning. Please lift Mary up in prayer and pray that everything goes smoothly during the procedure. For SMA patients the first 4 hours after extubation are the most critical. Kate and I are very nervous about the whole thing so please pray for our strength as well.

On another note, the pictures from all over the US have started to pour in! Thanks to everyone for sending them so quickly! Mary has enjoyed looking at them and didn't
T want to hang them all on her window, because she was to hold her favorite ones close to her! Isn't that sweet?

We will continue to update.

Mary Receives 105th Airlift Wing's Young Champions Medal of Honor!

2010-09-13T13:55:00.000-04:00

Yesterday, Mary had the special honor of receiving a Medal of Honor from the 105th Airlift Wing, Stewart ANGB for being a "Young Champion". The Young Champion Program was created in 1998 to recognize the courage of children who have battled or are currently battling life-threatening or debilitating injuries or illnesses. Although Mary could not attend the event in person, because she is in the hospital, Sue Manning, the person who nominated Mary for the award, accepted the award on her behalf and then delivered it to Mary in the hospital. Sue is pictured below giving Mary her award.

From Drop Box

Mary has RSV and a challenge!!

2010-09-12T19:29:00.000-04:00

I'm sure many of you have heard by now that Mary has been very sick for the past few weeks. Mary tested positive for Psuedomonos and we spent 5 days at Westchester hospital PICU last week, and went home last Sunday. Then Mary was still having lots of trouble so we went to see Dr. Bach (www.doctorbach.com) on Wednesday. He admitted us to the ER at UMDNJ in Newark, NJ and by that time Mary's left lung was totally collapsed! Mary was quickly moved to the PICU where she was intubated. She later tested positive for RSV. Mary is still intubated and having some trouble with LOTS of THICK secretions. But we are working dilegently to keep her lungs clear. Now for the challenge!
Mary has 3 large windows in her room, we would like to completely fill them with pictures and cards from friends and relatives! Please mail them to:
The University Hospital
G PICU, Room 420A
Mary Nelson
150 Bergen St.
Newark, NJ 07103

PLEASE KEEP MARY IN YOUR PRAYERS!!

Mary's Trip to the Museum of Natural History

2010-08-24T22:01:00.000-04:00

A few weeks ago, Mary was able to visit the American Museum of Natural History in New York City. A special thanks goes to Mary's great aunt Danielle who was able to hook us up with a special VIP tour. Mary had a blast and we got to see SO many neat things. She especially enjoyed the walrus and the brontosaurus. Since the visit, Mary has watched Night at the Museum like 20 times!!! In fact, she is watching it as I type this!!
Thanks to all who made this trip possible, especially, Danielle, and Jackson's babysitter, Diana.

Walk for SMA

2010-06-06T21:46:00.009-04:00

In June, Mary and her family had a great opportunity to go to the beach in Long Island and meet with other SMA families to Walk and Roll for a Cure for SMA!! We had special "Miracle for Mary T-shirt made for the event and over 25 friends and neighbors from the West Point community came out to support Mary on the walk. Mary made it the entire 3 miles, despite the sun and heat!

Notice, Mary was smart and asked for her BiPap before the walk, and she had plenty of shade as well!!!

MaryTurns 3!!!!!!!!!

2010-02-28T23:37:00.000-05:00

Our little girl turned 3 today!!! She is such an amazing little miracle and we are so proud of her for becoming a big girl! She will even start school soon!! Because of the 2+ FEET of SNOW! Most of her family could not make it into town, because flights into New York were canceled. We also couldn't have the party at the West Point Train Station, because they hadn't dug it out yet! So we had a "Bee" Party at home and it turned out great. Mary had all of her little friends there and even a few special surprises! (see pictures below)

Mary drawing with her friends...

look at the concentration!!

Buzzzzz....

Mary's first special surprise, her friend Sophia, who turned 1 yesterday, came all the way up from Long Island to see Mary for her birthday!! It was so special to see her and Mary just loved playing with her and showing her all of her special toys!!

Sophia and Mary holding hands...

sweet smiles!!

And here is the 2nd big surprise . . . ELMO!!!!!

more smiles!!!

and TIGGER!!!!!

Limbo daddy!!

the family!

Mary, Mommy, and Tigger!!

Mary's best buddy Caleb with Elmo and Tigger

Big Smiles!!!

Elmo and Tigger with Sophia. . ..

Jackson even joined in the fun, and he wasn't even scared of him this time. . .

Josie watching Mary open her present. . .

Mary talking to Sophia. . .

Lastly, Jackson showing off for the ladies. . . .

Disney World Trip!!!

2009-12-24T08:31:00.000-05:00

We all had an amazing trip to Disney World, but it was especially special for little Mary! There were so many amazing things she was able to do and I think she made memories that will last a lifetime! A special thanks goes out to Make-a-Wish of Hudson Valley and to Give Kids the World Village! These two organizations made our trip and our stay extra special. There are so many things to tell about . . . , Mary got to meet all of the Disney Characters, most importantly, her favorite; Tigger! She even got to have a private Tea Party with him!!
We took over 1200 pictures, so it would take a while to post them all (and view them for that matter) so I'm going to break them up a little:

Here are some of our favorites from the trip:
Just click on the link below the photo to see the rest of the album:

From Cropped Photos

Here are some pictures from Sea World. . . absolutely amazing, Mary instantly fell in love with Shamu and got to feed and pet the Dolphins:

From Sea World

The Animal Kingdom, Mary had all of her relatives come with us this day, including, Grandma and Grandma W, her cousin Billy, aunts and uncles, Bill, Amo, Angie, and Jason, and her Great Aunt Nellie!

From Animal Kingdom

Here is a link to Mary's extra special "Tea Party with Tigger!" This absolutely made her trip! Mary was smiles all day!

From Tea with Tigger

The same day as the tea party, Mary also got to meet all of the Pixie Fairies, AND all of the Disney Princesses!

From Magic Kingdom

Lastly, Mary had an amazing time at the Give Kids the World Village! Mary loved riding the trains there and doing all of the other fully accessible activities. This place it absolutely amazing!! Mary even got to go fishing and catch her first fish... a large mouth Bass!!-- That was fun for Dad too!!!

From GKTW Village

We need to upload some video as well. And maybe Kate can post about our RV adventure on the way back!!

Countdown to Disney World!!!

2009-12-10T08:12:00.002-05:00

As some of you may know, Mary was recently granted a Make-a-Wish. Make-a-Wish is an amazing foundation that grants wishes for children with life-threatening medical conditions. Well, they came out to the house a few months ago, and after some careful thought, Mary decided that she wanted to go meet Tigger at Disney World!

Last Saturday, Susan and Anthony from our local Make-a-Wish chapter came back out to tell Mary about her trip. Mary is SO excited!! Here are some pictures from the visit:

Mary looking at the HUGE Tigger in the Wish basket from Make-a-Wish:

Mary posing with Susan and Anthony from Make-a-Wish, she is still in her PJ's since she had been under the weather and decided to sleep in.

It was SO cute, Mary had been sick and unwilling to come off of Bipap for more than a few minutes all week, but with they showed up, she came off of Bipap and said, "I am feeling much better, I think I am ready to go to Disney World!"

Mary in awe of all her new Tigger friends:

My FAVORITE picture, that smile says it all:

Mary eating dinner with her "Big Tigger" later that night (yes, she is still in her PJ's, or what she like to call her "Elmo Pa-Jammies".

Well, we leave on Saturday and a driving down to Florida in a 30 foot RV!! We will try to keep to all posted on the progress of the trip and post lots of photos from Disney! Please pray that everyone remains healthy for the trip!

Mary's 33 Month Birthday and Thanksgiving

2009-11-28T23:01:00.000-05:00

Sticking with the Cookie Monster theme from Halloween, Mary had a Cookie Monster cake for her 33 month birthday. She also had her Aunt Angie and Uncle Jason in town, visiting for Thanksgiving. Here are a few of our favorite photos from the weekend:

I call this one: "Jason stole my milk and I drank his beer!!"

From December

I call this one: "Pull my finger!!"

From December

Mary and Daddy ready to eat Thanksgiving Dinner:

From December

Mary and Mommy:

From December

Look how tall Mary is getting:

From December

Mary baking cookies with Angie:

From December

The Cookie Monster Cake:

Angie and Jason with Mary before she blew out the candle:

Halloween on Sesame Street!

2009-10-31T19:51:00.002-04:00

Mary and Jackson had a great Halloween! Mary wanted very badly to be Elmo and she wanted Jackson to be Cookie Monster! The two made a great pair! Dad stayed up all night making Sesame Street signs for Mary's cart. They turned out pretty good.

Elmo and Cookie Monster:

From October

Mary and Caleb (sans front tooth!)

From October

Mommy was supposed to be Oscar the Grouch:

From October

"I LIKE COOKIES!!!"

From October

Notice the cookie crumbs on his fur. . .

From October

Notice the beautiful fall leaves and the invisible kid running mach1 in the center of the picture:

From October

My buddy Joe Dirte:

From October

Our neighborhood crew:

From October

Cookie and Yoda!

From October

Love this one:

From October

Mary and her buddy Caleb:

From October

Cheerleader Mary

2009-09-20T23:15:00.001-04:00

Mary had an exciting weekend of cheering on Army football and Rugby. First she got to go to a tailgate at Ryan's boss's house. She had a great time and got to show off her new cheerleader outfit!

Mary and Daddy getting welcomed to "The Department with the Heart":

We also went to a Rugby game on Sunday, and Mary and Jackson had a great time, here are some pictures:

Mary was more interested in playing with her buddy Caleb than watching rugby. . .

Jackson with Mommy and Jo:

Buddies:

Jackson and Daddy:

Mary tickling Caleb:

A shot of the new field, nice eh?

Hope you enjoyed the pictures! We look forward to many more adventures here at West Point this fall!

Angie and Jason visit!!!

2009-09-06T23:03:00.001-04:00

We had a great visit this weekend from Mary and Jackson's aunt and uncle, Angie and Jason! They also brought the dogs, Bella and Britta. They came up on Saturday and came to see Mary in the hospital, Mary was VERY excited to have visitors. Luckily she also got to go home on Saturday afternoon as well. Mary just fell in love with her aunt Angie, and really enjoyed reading books and playing with her. Here are some pictures from the visit:

Mary and "Baby Jackson":

Mary was being so goofy, it was cracking all of us up. . . you can see Angie laughing!!!

Jason telling Jackson a hunting story, I'm sure:

Mary in the hospital

2009-09-04T21:10:00.003-04:00

Sorry we havent posted in a while. things have been busy with school and the whole family being sick this week.Mary is in the hospital tonight. We thought she was over her cold, but she is have some trouble managing her secretions and keeping her sats up. Please say a prayer for Mary. I will post more when home and not just on my phone. . . my thumb is tired.

Mary Turns two and half!!!!

2009-08-29T22:24:00.000-04:00

We all celebrated a huge milestone this weekend as Mary turned 2and 1/2!! Mommy made her this wonderful cake:

And Mary enjoyed blowing out the candles!

For her birthday, Mary got to go to the PX and pick out anything she wanted. She insisted on getting the purple baby pictured here, that she promptly named Jackson. . .

She loves to feed the baby and take care of it just like a really mommy.

Jackson got to eat some of Mary's cake too!!

Mary also got an Army cheerleader uniform from daddy, which she is very excited to wear for the first Army football game!!

Overall, it was a great day and we were really excited to see Mary turn two and a half!!

Jackson's First Haircut, Mary's Second Haircut

2009-07-25T22:08:00.002-04:00

We've been super busy, as I know all of you have, so we haven't posted enough on here. On Friday we took Jackson to get his first haircut. Mary went with and really enjoyed watching Jackson, so much that she wanted to get her haircut too!
Here are some of the pictures:

Hope you enjoyed, see you in a week or two!

Happy 4th of July!!!

2009-07-04T23:30:00.003-04:00

Well Mary and family had a wonderful 4th of July. The weather was absolutely beautiful here, sunny and mid-70's. It actually got a little cool eating dinner outside this evening, we all had sweatshirts on.

The day started with Mary and Jackson participating in the 4th annual Connor Loop 4th of July Children's Parade. Everyone had a great time and it was so fun to see how all of the kids decorated their bike and strollers. Mary's was one of the most decked out with balloons and flags.

After all of that excitement the kids took really good naps and then we had some friends over for dinner and to go watch the fireworks at Trophy Point.

Backyard Bar-b-q and a trip to the Zoo!

2009-06-01T00:17:00.002-04:00

We enjoyed another weekend of beautiful weather her in New York, (it was actually a little bit on the cool side) so we spent lots of time outside. Last night we grilled out in our new backyard and the kids had an absolute blast eating and playing outside. Mary asks to go outside and lay on the lawn chairs pretty much everyday, she just loves being in the backyard and playing. Then today, we went to a little zoo that is at Bear Mountain State Park about 6 miles from our house. The zoo wasn't that great, but it was a very nice day and a good adventure in nature. Here are some pictures from the weekend, enjoy:

(Don't ask me how I got Sam to smile!)

Big Blog Catch Up

2009-05-29T23:25:00.004-04:00

Ok, Ok, Ok, I've been a terrible blogger lately, but we've been extremely busy. We've finally completed our move to New York and we are about 90% done unpacking the house. We have about ten boxes that we still need to unpack. We are very happy with the house in New York and the fact that it is fully ADA accessible makes life a lot easier for us. It is great to be able to wheel Mary right into the house with NO steps! So, since we haven't posted for over a month there is a lot to catch up on, Mary has been very busy and coming up with something new everyday. Lately she has become little miss independent. Her new quote is "Can I do it? . . . . by myself?" It is SO cute and very encouraging for us that she wants to be so independent.
I've got a ton of pictures to show what we've been up to for the last month or so, so here goes . . .

Before leaving Virginia Mary went to a butterfly release at the local farmer's market:

Mary also celebrated her 26 month birthday and her dad made her a Lighting McQueen cake:

Mary also got to go to Build-A-Bear and she picked out a cute little frog that she named "Fergie". . .

Mary also made Jackson a dog named "Sam" of all things, here she is kissing the dog's heart and putting it in the dog:

Mary even recorded her voice saying "woof, woof, I love you Jackson" and put it in the dog. Jackson loves it!

Mary picking out an outfit for Fergie:

Now Mary never leaves home without "Fergie the Frog". Fergie gets the same treatments as Mary everyday, and a bath, and pretty much does everything Mary does.

Here Fergie and Mary pay one last visit to Dr. Gaston, Mary's pulmonologist. He was great and we will miss him very much!

Fergie even got a G-tube, so Mary can feed her:

Grandma Martha came to visit to help us move, we made plenty of trips to the park to enjoy the nice weather before we left Virginia:

Mary helped Grandma celebrate her 63rd birthday on the last night that we were in Virginia:

Jackson helped celebrate too:

Saying goodbye to our awesome neighbors, the Gaspar's:

Here is a picture of our new house in New York:

Here we are all taking a tour of West Point:

Sam and his buddy Murphy playing in our new backyard:

Mary keeping a close watch on Jackson:

Celebrating Mary's 27 month birthday:

Jackson helped celebrate too:

Finally, today Mary had another visit from her Great Aunt, Danielle and she got to meet a bunch of her relatives from Minnesota, (Brett, Carol, Matt, Mike and McKenzie):

Mary and McKenzie:

Lastly, a picture of Fergie and Mary after their bath tonight:

I hope you enjoyed, sorry it has been so long and I apologize for the mega-long post, but I had a lot to catch up on.

The Center for Courageous Kids

2009-04-27T22:19:00.003-04:00

Well as many of you know, Mary got to go to camp last weekend. She had such a great time and this camp was such an amazing place. Here are some pictures from the weekend. I think Mary's favorite part of camp was the bunkbeds, or as Mary calls them, the "dunk-beds". Every night, Mary asks if she can go take a nap in the "dunk-bed". We have to explain to her that she doesn't have a bunkbed in her room, and they are just at camp. Then she asks if she can go back to camp. I have a feeling I will be buying a "dunk-bed" in the near future. . .

Here are some pictures from the weekend (we took about 250!):

Mary arrives at camp and is greeted by MJ!

Jackson in the "dunk-bed"

Mary on the first night of camp, very excited!

Mary sharing an ice cream cone with mommy!

Getting ready to race her friend Conner!

Mary bowling on her first night, her other favorite activity!

Look at the concentration!

We found a frog that night too!

Mary hanging out with the girls. . .

Drawing an Elmo picture with mommy!

Painting a dog with daddy!

Waiting to ride horses . . . (does Jackson look bored??)

Mary loved the horses!!

Saying "thank you" to her horse, "Mac"

Mommy and Mary after the horse riding

Getting ready for a manicure. . .

Mary wanted to give daddy a "man"icure!

Warming up after a swim. . . .

The whole family!

Getting ready to go home!

Signing the poster. . .

One more bowling game before we leave

Mary Bowling

2009-04-16T08:53:00.003-04:00

Mary has been super excited all week about going to camp. She got a bowling set for Easter and she has been practicing all week so that she can bowl for real at camp.
Here is a little video of her bowling a strike:

Notice how she even spins the ball, just like the pros!!

I think she bowls better than me!!

A Trip to Washington DC

2009-04-11T07:59:00.002-04:00

We took advantage of some beautiful weather this week to take the kids to Washington DC. It was a great trip and Mary did very well in the car. We were able to find a great handicap accessible parking spot right next to the WWII memorial so that made it very convenient. It was neat for Kate and I to see all of the monument again, we had both been before, but it had been many years for Kate, so there were some new monuments and memorials. Mary mostly enjoyed seeing the ducks, that is all she could talk about and got upset whenever we wanted to leave the duck to go look at something else. She also liked watching the planes and helicopters fly low overhead. Here are some pictures from the day:

Cheerleader Mary!

2009-03-29T22:38:00.002-04:00

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

2009-03-29T08:40:00.004-04:00

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)

2009-03-25T22:45:00.002-04:00

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!

2009-03-24T23:00:00.000-04:00

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!!

2009-03-20T00:12:00.003-04:00

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

2009-03-14T00:19:00.004-04:00

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!

2009-03-13T10:02:00.003-04:00

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

2009-03-12T09:23:00.002-04:00

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

2009-03-08T13:40:00.000-04:00

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.

Great sound quality from a tiny micropho

rugr www.miracleformary.com 3/13/2009

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

()

THE BIG DAY!!!

2009-02-28T22:57:00.002-05:00

Wow, it really has been a few weeks since we've posted on Mary's Blog. Our apologies, we really have been busy. Well, we've had lots of good news in the past several weeks. First, we were planning to have Jackson's Kidney surgery immediately following Mary's birthday, since it would be during my spring break, and we would have family here to help out while Jackson was in the hospital recovering. Well, we got really good news about two weeks ago and found out that Jackson didn't have to get surgery!! Hallelujah!! Praise the Lord for fixing his kidneys!!!

Since Jackson didn't have to get surgery, we decided that with Family in town we would finally get him baptized. We asked Angie and Jason to be Jackson's God-parents, and it worked out perfect because Angie was able to be here for the baptism. Here are a few pictures from the Baptism this morning:

Mary and Jackson's Great-Grandma Eunice was able to visit as well, so we took the opportunity to take a picture spanning 4 generations!

AND NOW FOR THE BIG EXCITING HUGE SUPER DUPER NEWS!!!!!!

MARY TURNED TWO TODAY!!!!

Kate planned an amazing party and Mary had a great time! There was live music, and games, and prizes, and a balloon release, and all sorts of wonderful stuff.

Mary's friend Emily came to help Mary celebrate:

The grandmas:

Jackson and Aunt Angie:

Balloons!!

Music Time!!

Mary getting ready to play "Pin the Ladybug on the Leaf"

Mary and her friend Emma:

Mary and Nicole:

Mary's friend Cooper:

The Ladybug cake:

Getting ready to blow out the candles:

Jackson had so much fun, he fell asleep:

Mary and her nurse, Michelle:

The birthday girl:

We are so Thankful to God that this day finally came, when we got Mary's diagnosis 18 months ago, the doctors told us she likely wouldn't see her second birthday. We didn't accept that and have done and will continue to do everything in our power to ensure Mary lives a full and happy life. We hope to see many more birthday's for Mary Grace! Thanks to all of you for all the love and prayers and support over the past two years!

Happy Valentine's Day!!!

2009-02-15T11:41:00.002-05:00

Happy Valentine's Day everyone! Mary had a very fun day, which included opening lots of Valentines from all of her friends, baking heart shaped cookies to take to the firemen, and playing with Jackson. Here are some pictures of the fun day:

Mary opening Valentines!

Jackson eating Valentines!

Mary showing off Tinkerbell!

Mary and Mommy in her Valentine's Outfits!

Jackson in his Valentine's Outfit!

Mommy reading Mary her Valentine's Card!

Mary's flowers from her nurse, Michelle!

Mary reading Tigger and Pooh!

Jackson wants the balloon!!

Mary taking the cookies she baked to the firemen!

Mary with "Mack" the firetruck!

Hope you all had a great day as well!

Mary Gets to Promote Daddy!!!

2009-02-05T00:09:00.000-05:00

On Monday, Mary got the honor of promoting her dad to Major. She was very excited about it and held on to the "oak leaf" all morning up until the big event. Mommy even taught Mary to say "Major Daddy"! Here is a picture of Mary "pinning on" (the Army uses velcro now) daddy's new rank:

Here are some pictures immediately following the promotion, can you see how proud Mary is?

Mary's Broken Leg and a Trip to the Park!

2009-02-01T23:50:00.000-05:00

We had a very unfortunate (to say the least) event happen this week. Mary went to see a special doctor about getting fitted for a body brace and some new AFO's (Ankle and Foot Orthotics) and while the doctor was "examining" her he hurt her leg very badly. We're not sure yet if it is broken, but we think it is and are taking all of the precautions. Here are some pictures of Mary's cute little cast:

Also, here is a crazy picture of Jackson, who loves being up-side-down! Mary loves it too!

Also, on Sunday it was almost 60 degrees here, so we took advantage of it by taking a walk up to the park in our neighborhood. Mary had a great time and loves to go on the slide and swing with mommy and daddy. Jackson wasn't as entertained!

Mary's 23 Month Brithday!

2009-01-30T23:39:00.000-05:00

Here are a few fun pictures from Mary's 23 month birthday celebration. Mommy made an awesome Elmo cake!

Jackson playing with Mary's balloon:

The amazing cake that Kate made:

Mary getting ready to blow out the candle:

Blowing out the candle:

Opening some books from Grandma and Grandpa N:

Sam and Jackson playing:

Mary concentrating on playing her video game:

Another shot of Mary playing "Whack-a-Gopher" using the camera mouse:

Hope you all enjoyed the pictures! We are all looking forward to Mary's big celebration next month!

Mary's Special Friend

2009-01-28T12:10:00.003-05:00

Over a year ago, when we got Mary's SMA diagnosis, Connor was the first child with SMA (other than Mary) that we met. Connor is an amazing inspiration, and his parents really inspired Kate and I to take an active role in Mary's treatment and development. When you ask Connor what he wants to be when he grows up, he'll instantly tell you, an astronaut. I don't have any doubt that he will be one. Just like we have no doubt that Mary will do whatever she puts her mind to.

Here is a link to an awesome video about Mary's special little friend Connor.

Connor has SMA, Type 1, like Mary, although he is able to sit upright, thanks to a steel rod in his spine. Hope you enjoyed the video and the amazing story.

Ice Skating

2009-01-26T22:25:00.003-05:00

Mary got to go Ice Skating this morning at the Charlottesville Ice Park and she had a great time! Special thanks to Lindsay from the Ice Park for allowing us to do this. Mary had a great time racing against her. Here are some pictures:

Vacation to Virginia Beach

2009-01-21T22:54:00.002-05:00

I had the day off of school on Monday so we took the family for a little mini-vacation to Virginia Beach. Yes, it was the coldest weekend so far this year, so probably not the best time for going to the beach. But, the price on the beach house was right, and we had our friends, Robert, Wendy, Jadon and Emma visiting from Tennessee, so we figured why not. Anyway, we had a great relaxing and wonderful weekend. Mary really enjoyed seeing the ocean and loved the beach. By Sunday she was asking to go back down to the beach, even though it was below freezing when we went the day before. Mary really loved the aquarium! She absolutely loved seeing the huge sea turtles and she liked the sharks. Here are several pictures from the long weekend, enjoy!

Elmo Mania and the Park

2009-01-15T23:22:00.004-05:00

Hey Everyone, we hope you are all staying warm!! It seems like the whole US got a cold-snap this week. It is supposed to get down in the single digits here tonight! That is kind of rare for around here from what I understand.

I just wanted to share some pictures of the last few weeks . . .

First we had a nice surprise visit from our friend Kathryn from Tennessee. Kathryn used to babysit Mary when she was a little baby, so Mary enjoyed seeing her again!

Just a cute picture of Mary pretending to be Darby from "My Friends Tigger and Pooh" and "slapping her cap"!!!

We also went to Darden Towe Park in Charlottesville. . .

Mary really enjoyed the slide. . . .

And we've done lots of playing with Elmo lately (not to mention reading Elmo books)

How many Elmo's do you see here??? (I count six!)

Mary seeing double!

Elmo and Jackson having a stare down.

Jackson all ready for bed. . . .

Jackson out for the count. . . .

Hope you enjoyed the pictures!!

Mary saying the Alphabet!

2009-01-13T07:38:00.001-05:00

We final got an OK video of Mary saying the Alphabet. She usually doesn't skip letters, but I think she was a little nervous being on camera!

. . . and now presenting Mary on the Harmonica!!

2009-01-08T23:04:00.003-05:00

Here is a cute little video of Mary playing the harmonica, with mommy accompanying her. . .

Mary would play a note and then Kate would copy it, Mary absolutely loved it! We have been working a lot with Mary blowing whistles and playing harmonica to give her little lungs and diaphragm a workout. It is great for increasing her breath support and even her vocal volume.

P.S. and of course she is STILL wearing her Tutu!!

Mary's New Tutu!!!

2009-01-06T10:42:00.005-05:00

Mary had a visit for her birthday from her Aunt Angie, who just returned from Iraq about 3 weeks ago and her Uncle Jason. They gave Mary a Ballerina Tutu and Crown and magic wand for her birthday. Well, it just so happens that Mary's absolute favorite book that her mommy reads to her every night before she goes to bed is the book "Just the Way You Are" with Elmo and Zoe.

Mary calls it her "Tutu Book". So needless to say, she LOVED getting her Tutu. She hasn't taken it off since she got it. You can see this in the pictures below:

Mary's 22 Month Birthday

2008-12-29T13:27:00.001-05:00

For Mary's 22 Month Birthday Party we had lots of family from both Michigan and the D.C. area come and visit. It was nice to see family that we hadn't seen in so long and some that Mary and Jackson had never met. Ryan made a North Pole cake, complete with marshmallow snowmen sporting Christmas scarves and little frosting black-hats and Santa's workshop made out of graham crackers. Here are some pictures of the festivus!

Christmas Day Pictures

2008-12-26T13:16:00.000-05:00

Ok, continuing to catch up on Mary's Blog, here are some Christmas Day pictures. Everyone really had a good time and WAY too many presents!!!!

Merry Christmas!!

Christmas Eve Pictures

2008-12-25T09:59:00.001-05:00

Hi Everyone!
My apologies for not posting these sooner, I'm playing a little catch up.

Here are some pictures from Christmas Eve:

As you can see, Jackson learned to sit on his own, with help from his cube that he got from Uncle David. Mary had a great time with her cousin Billy and loved seeing Santa Claus.

I'll post some pictures from Christmas Day a little later today. Busy Busy!

Pre Christmas Pictures

2008-12-24T09:34:00.004-05:00

Merry Christmas Eve Everyone! I know we'll have tons of photos to post after Christmas so I figured I would catch up on these before the big day. We've had grandparents and cousins visiting so lots of excitement. Here goes!

Well a few days ago, Mary's friend Anna had her second Birthday. She came over to open the present that Mary gave her. Mary was very excited to see Anna open it.

Jackson is learning to sit up on his own now and doing quite well, but I think he will stand before he sits and walk before he crawls!

Jackson, like Mary, absolutely loves Sam! (I think the feeling is mutual!)

A picture of Jackson sitting. . .

Jackson with Grandpa Bill. . . do you think they look alike?? hmmm. . ...

Mary made Christmas cookies and took them to the rescue squad with Grandma and Grandpa!

Mary absolutely loved playing with her cousin Billy! They were SO cute together. Here Mary is showing Billy how to use the gear toy.

Here Mary and Billy are playing with Puzzles. . .

Billy is reading Mary a Tigger story!

Now Mary is telling Billy about Trucks!!!

Just a cute picture of Mary telling daddy something. . .

Have a great Christmas!!

Mary Driving!!

2008-12-19T13:18:00.003-05:00

Some of you may have seen this already. It is a video that we took of Mary last week while the weather was warmer. She is driving her KidKart mounted on a Z500 demo power base. We rigged it up with a mini-proportional joystick, which Mary is much better at using than the proximity switches we were using before.

We are submitting the order for Mary's own chair now and hopefully if all goes right we will have it sometime this spring!! Here is what Mary's chair will look like:

"Popstar Pink" is the color she chose, she is very excited to get it!

Video of the Day!!

2008-12-14T15:10:00.003-05:00

Here is a video of Mary holding the camera and counting and playing with her butterfly.

Enjoy!

Hope everyone is having a good December!

Happy Thanksgiving!!!

2008-11-30T22:02:00.003-05:00

We hope everyone had a great Thanksgiving. We are going to catch up on some pictures from the past few weeks, so here are some slideshows:

The first one has some pictures of the kids from Thanksgiving. Mary and Kate decided to bake some pumpkin pies and take them up to the local fire/rescue guys to thank them for everything they've done for us. It is always better to see them when it is not an emergency!

The second slide show are some fun pictures that I took of the kids in the playroom yesterday. Mary was having lots of fun playing with her little brother and visa versa:

These last few pictures are from when Mary's great aunt Danielle visited us a few weekends ago. It was great to see Nellie again and it was great for Mary and Jackson to meet her. We hope to see her more this spring and a lot more when we move to New York next year!

Again, we hope everyone had a great thanksgiving! We truly do have a lot to be thankful for!!

Mary's New Stander

2008-11-19T06:40:00.004-05:00

Here are some pictures of Mary in her new stander! She even chased Sam to the end of the street today and was smiling the whole way! She is doing much better than her ambulance ride and ER visit yesterday - lets pray it stays that way!

We woke up to a light dusting of snow and then we had flurries in the afternoon - winter is arriving!

Hope everyone had a good day!

Kate, Ryan, Mary and Jackson

VeggieTales Live!!

2008-11-09T22:44:00.006-05:00

Hi All! We drove of to Woodbridge, VA yesterday (Near D.C.) to meet some friends and see a very special show. . . we saw VeggieTales Live- God Made You Special!! Mary was SO excited, that she wouldn't sleep the whole ride up! She really enjoyed the show and she did really well. It was our first opportunity to use our new MAX EasyS stroller and we LOVED it. Mary was so comfortable in it all through the show! I'm attaching some pictures from the day. I would recommend this show to anyone with children. If it is ever in your area it is definitely worth the drive and price of tickets!

Larry the Cucumber and Jr. Aspragus

Mr. Lunt (The Gourd)

Bob the Tomato!!

Mary and her new friend Emily

Posing for pictures!!

The whole crew (L to R- Heather, Emma, Mary, Jackson, Ryan, Nate, Diana, Emily)

Mary hanging out with Elmo and Larry the Cucumber in her new stroller!

Lastly, a super cute picture we took of Jackson today! His eye is looking a little better!!

Mary at Camp Holiday Trails

2008-11-01T16:06:00.003-04:00

Today was a beautiful fall day! 70 degrees and not a cloud in the sky. . . and Mary got to go to day camp! It was a wonderful experience! Camp Holiday Trails is a camp for children with chronic illnesses located here in Charlottesville. It has been operating for 35 years! And it is absolutely beautiful!! Mary had a wonderful time at the camp. She played with all the other children and she even got to ride a horse!!! (Mommy was SUPER excited about that too!!) Mary had a super good time, but it really wore her out. I the ride home she was so tired she was asking for her Bipap.
Here are some pictures from the day! Enjoy. . .

P.S. Her horse's name was patchy and he was the oldest horse there. . . he was 34 years old!!!

Halloween Tigger and Pooh!!!

2008-10-31T23:53:00.003-04:00

Happy Halloween everybody! Originally Mary was going to be a monkey for Halloween, but she wanted to be Tigger, so it just came naturally that Jackson would be Pooh Bear.

Here is Mary after mommy painted her face, she loved it!!

Here are tigger and pooh getting ready to go trick-or-treating. . .

Pooh bear!!

Mary had a great time!!

Mary and her friend Anna. . .

The whole family, on the lawn at UVA.

Mommy and the kiddos . . .

Someone is worn out!!!

Mary's 20 Month Birthday and Pumpkin Carving

2008-10-31T14:08:00.003-04:00

Fall is here!!!

2008-10-21T23:19:00.002-04:00

The weather has been just beautiful here that past few weeks. Very cool at night and in the mornings, just above freezing. Copper loves it and spends most of his days outside. The afternoons are very comfortable and Kate and I and the kids have been taking nice walks and runs with the stroller. On Sunday we took some "leaf" pictures that we wanted to share with all of you. Here are the pictures:

Also, Jackson has been getting more and more personality every day. Mary just adores him!! (Although she did get a little jealous this morning when mommy was showing Jackson some of Mary's flashcards!!!) Here are some pictures of Jackson rolling over and playing with Big Sis:

Enjoy and have a great week!

Mary's EagleEyes Fundraiser Challenge!!!

2008-10-12T00:34:00.003-04:00

We recently came across an amazing technology that helps people with severe physical disabilities have full access to computers. It is called EagleEyes and it was first developed by Boston College almost 10 years ago.

The Opportunity Foundation of America (www.ofoa.net) is a non-profit organization that was developed to improve the quality of life for children and adults with severe physical challenges. They are an amazing organization who are dedicated to building EagleEyes systems and providing them to children around the country who need them.

Mary and EagleEyes, how did this come about?

Mary loves using the computer and it is a great learning tool for her, but we've had a hard time trying to figure out an interface that is right for her. She can move a standard mouse, but she does not have very good control and she is not able to "click" the mouse buttons. A touch pad doesn't really work for Mary either. We've also tried Camera Mouse, which would work great in theory, but Mary doesn't have enough head movement to control that mouse either. So we stumbled upon EagleEyes and it seems to be the perfect solution for children with SMA, and other severe physical disabilities (and even visual disibilities).

Click here to view a video of how the system works (Video #2 is better)

We are trying to raise money for the Opportunity Foundation so that they can continue to manufacture these EagleEyes systems and provide them to families at low (or no) cost. Our minumum goal is $1200, but I think we can raise much more than that. There are two ways you can make a tax deductable donation:

1. Go directly to the Opportunity Foundation Of America website (www.ofoa.net) and click on donate now! PLEASE ENSURE THAT YOU SELECT "Sponsor and EagleEyes System" AND PUT "For the Benefit of Mary N. (miracleformary.com)" IN THE COMMENTS BLOCK AT THE BOTTOM OF THE DONATION PAGE.

2. Mail Donations to: (again put "For the Benefit of Mary N_____." on the check.)
OFOA\EagleEyes
atten: Debbie Inkley
7166 Villandrie Lane
Salt Lake City, Utah 84121
Tax ID# 87-0626778

Thanks to everyone for your continued support of Mary and our family and thank you for supporting this great cause. God Bless you all!

Carter Mountain Apple Festival

2008-10-05T23:31:00.002-04:00

Yeah! Fall is in the air! Its time for pumpkins and hot apple cider! We all ventured out this weekend and enjoyed the beautiful weather. We went to the Carter Mountain Orchard for their fall apple harvest festival. We all had a great time.
The orchard overlooks Charlottesville and the views are quite spectacular. I'm just waiting for the trees to start changing color, then we'll know fall is really here. They say it will be late October before leaves start to change around here. We can't wait.

Well, that is all we know for now, just wanted to share these pictures.

SO MUCH TO BE THANKFUL FOR!!!

2008-09-23T22:59:00.004-04:00

Many of you reading this blog know that Kate, Mary, Jackson, and I had a very scary event happen to us on Sunday. After having a nice lunch with some friends of ours in the downtown mall in Charlottesville, we were walking back to our car and Mary stopped breathing in the stroller. Luckily, thanks to our quick response and the help of lots of people nearby, we got Mary cleared out and breathing again. The ambulance was there almost immediately and Mary was in the ER within minutes. We were back home the same night and Mary is doing fine.

After something like this happens it makes you sit back and think of all the things we have to be thankful for. Here is a small list and some pictures of all the things I am thankful for:
-two wonderful kids
-a loving wife
-great family and friends who pray for us all the time
-our nurse who told us to always carry the "ambu bag" in the stroller with us when we go out
-the people on the street who called 911 and rushed to help us in our time of need
-ambulance crews/first responders/and emergency personnel
-our doctors and nurses (too many to mention by name!)
-the soldiers fighting overseas for our freedom
-The Lord our Father

Hope you enjoy the pictures. . . .

Mary's Driving Lessons

2008-09-21T00:10:00.002-04:00

For the past several months we've been in the process of getting Mary ready to drive. Yes, we've been evaluating her for a power chair! We'll the time is coming closer to when she will have her own power chair, but for now she has a loner chair from the Kluge center where she does her PT. Here is a small video of the first day she brought it home and drove it in the driveway. Mary loves to turn in circles. We are still working out the details of how she will interface with the chair, but for now she is using proximity switches and it is working ok. Hope you enjoy the video!

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Blog catch-up!

2008-09-05T22:20:00.003-04:00

Hello everyone!! We know it's been a very long time since Mary has posted anything - she's been very busy!

We just had a great visit from Grandma and Grandpa Windscheif! While they were here we went to the mountains, Michie Tavern, story time and a hike on a really cool trail near Monticello! We also celebrated Mary's 18 month birthday! Mary got to pick out a fish for her birthday, which she named Dorothy! Along with her fish, Grandma and Grandpa found a praying-mantis and put it in a jar for Mary to see. Mommy thought it was yucky and wanted it out of her house. We think it is still lingering outside trying to find its way in!!

Mary has been having fun playing, blowing bubbles and learning how to drive a power chair! She's doing very well and next week we get to take the demo home to practice! We're all very excited - even Jackson!

Speaking of Jackson - Mary loves being a big sister and is teaching Jackson about playing with toys - especially Elmo!

Daddy started back to school a few weeks ago and Mary really misses him during the day. When Mary hears the door open at the end of the day she smiles and says "Daddy, Daddy!". She's so smart and cute! She's also been learning all her colors and even more animals! Next we're working on the alphabet!

We hope everyone had a great summer and things are going well coming into fall and the winter months. Please say a prayer that Mary and Jackson stay very healthy during "cold and flu season" and don't have any major illnesses or hospitalizations - Mommy is very worried about this! Also, please continue to pray for all the SMA families as well as our troops serving overseas - including, Mary's Aunt Angie, Mary's Uncle David and Mary's Godfather Joe.

Thank you all for your continued support and prayers! We love you!

Here is a slide show of some of the pictures from the past few weeks:

We will remember to post more often! Love, Mary, Jackson, Ryan and Kate

Lots of Visitors and an Announcement!!!

2008-08-19T20:52:00.005-04:00

Believe it or not, things have been a little hectic in our house.

Mary is doing well and teaching Jackson lots of things. Here she is giving him a music lesson . . . if you look closely you can see she is telling him EXACTLY how to do it. Mary has become quite the talker lately. Her new favorite word is "uh-oh!!" It is really funny, if Jackson starts crying, Mary bursts out with an "Uh-Ohhhh!!
We just had to put this picture of Mary and Elmo in here because it is SO cute!!!!

Mary also had a visit from our friends from Tennessee, Robert, Wendy, Jadon, and Emma. Mary had lots of fun showing off her new little brother and playing with her boyfriend Jadon.
Mary has also been doing very well in the pool lately. Here she is playing tug-o-war with Daddy.

We had a very nice visit from Mary's Uncle David right before he left for Iraq last week. He brought his fiance', Nicole with him. And now for the announcement . . . David and Nicole asked Mary to be the flower girl in their wedding next June!!! Mary is SO excited for this opportunity and so are we!!

Here is a picture of David, Nicole, Mary and Jackson.

Please say a prayer for Mary's Uncle David and Aunt Angie who are both serving in Iraq.

Thank you all for your continued support and prayers for Mary! Please also pray for all of Mary's friends.

Mary's Trip to the Fair!!!

2008-08-05T22:48:00.004-04:00

Well much like everywhere else in the world summer means fair season here in Virginia. Mary got a special opportunity to go to the fair last week. Mary really enjoyed seeing all of the animals and hearing all of the animal sounds that she has been practicing so much.
She really enjoyed the cows and saying mooooooo, mooo, moooo!!!

Mary also got to pet bunnies and ducks. Here she is saying "quack"!!!
Mommy helped Mary make a very cool picture frame at the fair. Here is a picture of Kate concentrating very hard while gluing some pieces as Mary looks on and smiles . . .
Mary really liked the frame that her Mommy helped her make!
Mary got to ride on the "Mary"-go-round with her daddy. . . look at those smiles. . . I wonder who had more fun???Overall it was a great day, despite the heat, everyone had a great time! Mary can't wait to go back next year!!

Mary's 17 Month Birthday!!!

2008-07-28T22:31:00.004-04:00

Mary celebrated her 17 month birthday today!! Here is a picture of the whole family!!!

Mary got a new computer from her mom and dad, here are some pictures of her using the computer. She took to the wireless mouse very well. She doesn't have the strength to "click" it, but she got very good at pointing, so dad will have to adapt it with a switch to help her with clicking.
Here she is playing a "Clifford the Big Red Dog" reading game. Mary really liked the game and she practiced saying all of the words, hat, cat, bat. . . pan, fan, ran, etc. It was really cool!!!

Mary's mom also made her this cool Balloon Birthday Cake!!

Here are daddy and Mary just before lighting the candles. . .

A picture of Mary, mommy and Jackson. . .

Grandma Julie helped mary blow out the candles. . .

And Mary got a little taste of the frosting!!!

Mary's Stander and The Shenandoah National Forest

2008-07-27T21:42:00.003-04:00

Sorry we haven't updated Mary's Blog in a few weeks. . . Yes, we've been a bit busy, twice the diapers, twice the feedings, and half the sleep!! Actually, Jackson has been sleeping quite well, as you can see in this picture!!

Mary has been busy also, getting fitted for her new stander! Here she is posing with her new Bunny, "Hoppy" that she got from Teleflora flowers during their "Make someone smile week" promotion. Mary really likes to stand in the stander and chase Mom and Dad around the gym. Mary also likes to play basketball with her daddy.

You can also see how tall Mary is getting. She is in the 75th percentile for height!!

Here is a cute picture of Mary and Jackson (and Pooh) relaxing on the couch. Mary really likes to hold her little brother's hands. Jackson still doesn't know quite what to think of his big sister, but I think he already looks up to her!!

Grandma Julie has been visiting from Minnesota to help out with Jackson and Mary. Today we took a drive up to Shenandoah National Forest. It was a lot cooler up on the mountain, so it was nice to get out and do a little hiking.

Mary's New Brother!!!

2008-07-13T17:09:00.005-04:00

Mary's new little brother Jackson was born last night, 12 July at 7:19 pm, he weighed 7 lbs, 13 oz. Here are some pictures of the proud Big Sister and baby brother:

Mary holding Jackson, she is oh so careful!

Mary is twice as big as Jackson!

Big smiles!

Daddy and Jackson

Mommy with her babies

Does he look like Grandpa Bill?

Well he does have the Windscheif hairline!

Happy 4th of July!!!

2008-07-05T22:24:00.001-04:00

We hope everyone had a great 4th of July! We went to a friend's farm for a 4th of July party and Mary got to pet a horse, a donkey, and a goat. She loved it! Of course we forgot the camera in the car, but here are some pictures of her in her festive outfit!!

Mary and Sam!

Mary's 16 Month Birthday!!!

2008-06-30T00:07:00.003-04:00

Mary turned 16 months old yesterday! She had a busy and exciting day, as usual. Here is how the events of the day unfolded:

Mary started the day watching some cartoons with her new baby doll.

Daddy started the day making Mary a "Pool Party" Birthday Cake

Then we surprised her with her new swing! (note she is still in her PJ's!!!) Look at that smile!!!

Here is how the whole sequence goes:

Strap in!

Get ready . . . get set . . .

Go!!!!!!!!!!!!!!!!!!!!!!!!!!

This smile says it all!! She loves her new swing!!!

Mary and mommy pose for a picture with the new swing!!

Please pray for Mary and our family as we make a big trip to Washington DC on Tuesday to see a specialist at Children's National. We hope the trip goes well and all the doctors are cooperative!!!

Little Drummer Girl

2008-06-23T23:36:00.003-04:00

Here is a little video of Mary playing her drum. She keeps very good beat and she even sings along. Mary has also been working on perfecting her animal sounds this past week. So far she knows: Cow, Duck, Monkey, Tiger, Dog, Cat, Dinosaur (after watching Sesame Street today!), Horse (mom's favorite), Elmo, Pig, and Sheep, and maybe a few more . . . we'll try to get a video of her saying her animal sounds and post it here as well. Enjoy!!

Father's Day Hiking!

2008-06-19T20:03:00.003-04:00

Hey everyone, just catching up on our posts. We had a really good father's day. Mary got daddy a really cool picture book that her and mommy designed and made using Snapfish.com!! Dad really likes it. We also went hiking in a natural area near our house and then went for a nice Sunday drive in the Shenandoah National Forest. Here is a picture of Mary and daddy on the hike:

Aunt Angie Visits From Iraq!!!

2008-06-09T22:58:00.005-04:00

Mary had a very special visitor this past weekend. Her Aunt Angie got to visit her while she was home on her R&R from Iraq. Angie and Jason were in Washington DC on some business, and since we are only 2 hours down the road they drove down to visit for a few days. Mary took to Angie very quickly. It was a great visit and great to see them.

Mary loves to help out with the cooking in the kitchen!!

Mary having a conversation with her Aunt Angie as Uncle Jason watches in the background.

We are also working very hard to get Mary fitted for a stander. Mary loves to be in the stander and loves to chase mom and dad up and down the halls!! You can really see how tall she is getting when she is standing!

Swimming Fun!!!

2008-06-03T22:32:00.000-04:00

Hi All, sorry we have been SO bad about updating Mary's Blog! Ryan started his first week of school this week, so he has been busy "studying" every night. We all (Ryan, Kate, Mary and Jackson) managed to make it to the pool in our neighborhood one afternoon this week. Mary LOVES the water and had a great time. Here are some pictures:

Mary paddling with her arms and legs.

Mom holding Mary in the water.

Mary enjoying herself on the lawn chairs after a nice swim!!!

We'll post more next week!!!

Memorial Day Trip to the Mountains!

2008-05-26T00:22:00.001-04:00

Mary got to go to the mountains again during Memorial Day weekend to see her friend Jadon from Tennessee. Here are some pictures from the trip:Mary enjoying some bubbles on the porch with Mommy.

Mary and Jadon sitting on a bench, Jadon was helping Mary sit up straight.

Mary playing a concert for everyone, Jadon is in the background enjoying the music.

We celebrated Mary's 15 month birthday, as well as Jadon's 16 month birthday, and his sister Emma's birthday. Here is a patriotic cake that Kate made for the occasion.

Welcome to Virginia!!

2008-05-18T22:29:00.007-04:00

Hey everyone, we wanted to update the blog with some pictures of Mary playing in her new house. Mary is doing much better now and we are finally getting settled in. Mary is developing quite a personality, and she like to imitate everything that mommy and daddy do. She is making lots more sounds, and likes to tell you "what sounds monkeys and ducks make"

Mary is quite the musician on her triangle.

Relaxing after a concert!

She also likes to play the drums.

Here Mary is playing her triangle and her drum.

Sitting in mommy's lap.

Sitting in Grandma's lap.

Doing a puzzle in her kid kart.

Playing in her kid kart.

Mary has become quite a little artist.

Here she is showing off some of her artwork.

Daddy and Mary relaxing on the couch.

Mary's New Sling!!

2008-05-12T14:15:00.002-04:00

A few weeks ago Mary got a very cool package in the mail. It is a sling that some people made for her and she likes to use it very much. Here is a video of Mary using the sling to play her musical instruments:

Mary's Trip to the Mountains!!!

2008-04-30T23:23:00.001-04:00

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.