Happy Halloween!! (26 of 31)

I love this time of year and I am LOVING the awesome weather we are having today to go with all the festivities!

In a few short minutes school will be dismissed. Kids will run home to get their costumes on and then out they go to collect treats.

Emylie is excited to go trick-or-treating again and so are her sisters. I am excited to see their excitement and enjoyment of the evening. As I am contemplating going around the neighborhood with Emylie in her wheelchair, I cannot help but wonder how rolling versus walking changes the way you trick-or-treat. It may change it a little but I am sure we are going to have a great time!!

A little something about Spina Bifida (25 of 31)

Okay, since it is Spina Bifida Awareness, I thought I would add something more topic specific.

A child with Spina Bifida might have loss of feeling in their legs. For me, and perhaps for you, my initial thought goes to the ability to walk. Which of coarse is a major part of that. Another side of that is.... is it cold, hot? Some cannot tell. If they were to go down the slide at a play ground and it is hot, they wouldn't know. If the buckle in the car is hot and touching their leg, they might not know. If their feet are cold, the body signals might not relay the information accurately and not warm up like they generally would.

This is just one part of all that Spina Bifida can involve.

Pumpkin Carving (24 of 31)

What would Halloween be without sticking your hand in a pumpkin to pull out seeds (to be cooked and consumed later) and slimy pumpkin guts.

Can you guess which one is Emylie's?

Trunk-or-Treat (23 of 31)

Today the family is all feeling better. So we rolled on over to the Trunk-or-Treat. The girls were all excited for the party, especially Emylie. She was excited to put on her Minnie Mouse costume and get in her wheelchair to go have some fun.

Ellie being the good big sister that she is took Emylie to fish and play the bean bag toss. Emylie was thrilled to pick her prize - Mickey Mouse Go Fish cards!

A short time later we went outside for trick-or-treating and she LOVED IT! Even though she cannot eat the candy she enjoyed getting it and putting it in her bag. She realized that some candy (a box of nerds) made sound. So with each new piece of candy she shook it to see the sound it made. She would quietly say, "trick-or-treat" in between cars and then when asked to say it, she would get shy and reach for my hand. After we had gone to each car and were headed back she very loudly said, "trick-or-treat!, trick-or-treat!"

Afterwards we rolled back home, I not thinking it through well enough did not bring a flashlight. So Grandma was kind and followed behind us in the car to give us light. Emylie would go forward a little, stop and then ask, "where's Grandma?" I would tell her that Grandma was behind us shining the car lights so we can see where we are going. To which she would say, "Oh, thank you Grandma!" She repeated that conversation a couple times. She has such a kind heart and I love to hear and see what she expresses.

It is that time of year...(22 of 31)

The stomach bug has hit and it has hit us all. Yucky!!

I hope it gets out of the house quickly!

Sorry that this post is not something more interesting, but I don't have any energy today.

Up to Date (21 of 31)

I am UP-TO-DATE on the posts! Yippee!!
If you couldn't tell I got a little behind.

So for today's post

I AM CAUGHT UP!!!!

On a cute note....Emylie was looking at pictures on the camera and saw a picture of her Aunt Michelle. And ever so sweetly said, "I love you, Michelle."

Increased heart rate (20 of 31)

Yesterday evening Emylie's heart rate was higher than normal both awake and asleep. Her stomach was a little distended, so I vented her stomach and didn't get any air out. Nothing else was out of the ordinary...

Fast forward to this morning...her heart rate was still higher than normal and within an hour I figured out the reason. Diaper change...didn't even get a diaper on...diaper change...bath...diaper change...diaper change...etc...she has an upset stomach.

She took a much needed rest.

Shortly after waking from her nap she was playing on the floor next to her bed. Dave stopped by the house for a minute and after he left Emylie began crying. I told her "Daddy, will be back soon." She nodded her head in acknowledgement but continued to cry. Her lips started looking a little purple. I started to suction her and she started to fall backwards (almost like she was passing out).

Turned oxygen on, suctioned.

No improvement.

Thoughts of her dying were racing in my mind.

The steps of what I need to do are running through my mind. I pick her up, prepared to do an emergency trach change.

Suctioned again and her coloring started to improve and through the tears she says, "I better."

I am humbled every time something like this happens. How fragile each day, each hour, each minute is. I am INCREDIBLY grateful for each minute I have with each member of my family.

She began the day with an elevated heart rate.

My heart rate has now joined hers.

I hope she recovers quickly.