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.