Mary Turns 4!!!!

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!

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!

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

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....

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

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

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!

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

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

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

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!

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....

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!

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.