Saturday, April 30, 2011

Hippity Hoppity

We kept ourselves fairly busy Easter weekend. We had an Easter egg hunt at church that I helped out with a bit, and Kylie had a great time collecting the eggs and running around, and enjoying the treats she got. Here are a couple pics we got at the church:

Saying hello :)

Love this pic....enjoying her sucker, wondering why daddy is taking a pic of her eating her sucker, and those beautiful big eyes!

So just like last year, I put some bunny feet around the house that led to Kylie's she is early that morning, pointing out the bunny feet and trying to find where they led to.

And yes, she is wearing some Christmas jammies that are a bit small, but insisted on wearing them to bed the night before :)

Totally enjoying what the bunny left for her!

Before we put Kylie down for her nap on Easter Sunday, we had an Easter egg hunt for her at home. Check out the pics we got of her in her Easter dress and searching for eggs.

Kylie soon became an expert at hunting for eggs. She got to search for even more eggs when we got to Grandmas for Easter dinner. Here are some pics: proud of all of her finds!

I'm not sure, but I think Kylie enjoyed her cupcake for dessert :)

I think this is my favorite pic, because I somehow managed to capture I beautiful smile!

Thursday, April 28, 2011

How to feed a fish

-- by Kylie

Step 1: Get the can of fish food. Check.

Step 2: Get a stool and climb up on the kitchen table so you can reach the fish bowl. Check

Step 3: Drop two or three pellets into the bowl. Check...wait. How many?

Jody and I were getting ready for church on Sunday morning when I can downstairs to find Kylie with her hand in the fishbowl and the empty can of food floating on the surface. You can certainly see the floating island of hundreds of pellets. While a little tougher to see, the second picture shows just as many pellets underwater. Besides what wound up in the bowl, the table and floor were covered with these little pellets as well. I'm certain we'll be finding them for weeks to come. I have no idea why they would put so much food in these cans. We only give him two or three pellets a day (or every couple of days) and we had barely made a dent prior to our little accident.

The good news is that Fishy (that's our fish's name) has survived the trauma.

Sunday, April 17, 2011

We're dancing

Who would have ever thought that we would all be dancing now!

Yep...all of us :)

I can bet you anything that 2 years ago on this very day, dancing would have been the furthest thing from our minds. It was then that breathing was hard to come by, because we had no idea what was going on with our beautiful baby girl. It was around this time of day that we waited by the phone for a room to come available at our local children's hospital. It was also when our little girl was continuing to have some "episodes" as we called them, and the were increasing in frequency and duration.

Just a few hours later we got a phone call and headed to the hospital. We went to the Neurophysiology Clinic where a tech mapped out some areas on Kylie' s little head, and affixed some electrodes to all the markings. Kylie was quite freightened by all of this, as were we. Only thing was it was expected for her to scream at the top of her little lungs, and we had to be strong and comfort her while we were kind of falling to pieces. Not knowing where these pieces were falling....they were definitely falling and we were going right down with them.

The tech put in a call to the doctor and he came down to take a look at the current EEG results, while Kylie was still hooked up. He told her to go ahead and stop the test, and to send us back upstairs to Kylie's room. I was not in the room at the time, but Matt was in a panic once I got in the room. He said he just knew it wasn't good...that he could tell by how the doctor responded to the tech.

I told Matt to calm down and just wait...we needed to hear the news before jumping to any conclusions.

It didn't take very long for the doctor to come up to Kylie's room to give us the results we had been waiting for....the results we didn't want to hear...the kind that happen to other babies, but certainly not yours....never yours.

He was very blunt and said "This is not is Infantile Spasms." I think we were both immediately sick at that time. Then he went on to say the medication to help stop Kylie's seizures is very expensive. He said a 3 week supply is about $22,000! Yeah...that was just as crazy as the diagnosis. Fortunately there is an organization called NORD, and they cover the portion that insurance does not cover, so we did not have to pay anything out of pocket.

I know you are probably wondering why I am going through all of this again, when you can read it all here and in the posts that follow. Well, because we need to remember where we were and look at how far we have come. Because boy, we have come a long way....more than we could have EVER imagined. We thank God every single day for the blessings he has given Kylie and all of us...our little family.

It is amazing how quickly your life can be flipped upside the matter of just a few moments. It was those little moments, those subtle movements that I noticed Kylie doing just 3 days earlier that told me something just wasn't right. We never would have imagined the path we were sent down with Kylie in the days, weeks, and months to come.

It certainly has not been easy, moments have definitely been scary, and exhausting, and full of all sorts of emotions. I can honestly say it was all worth it to get to where we are now....but if there was a way to make the route smoother, we would have totally opted for that :)

There were all too many times when I thought: I just can't do this, I don't know if God knows this or not, but I am not cut out for all of this. We have learned so much from everything that happened to Kylie and our little family. I never knew how much a little person could teach me about life, how I see things...especially myself.

We are very aware that things could have been much different Kylie. Our journey has been full of ups and downs...enough to make you sea sick. One thing we are fully aware of is that the journey could have been full of many more obstacles....ones that would totally throw you overboard. We are very grateful for what we have, where we are, and how very awesome Kylie is doing right now!

I'm sure there will be more challenges ahead, but right now I want to do all I can to focus on the now.

Just look at how beautiful she is! Simply amazing!

Tuesday, April 12, 2011

School Days

Yep...this post is about school for Kylie. I had started looking into some places to enroll her in this Fall, and came across the perfect place, Community Covenant Church. They have a "Little Learners" program for 18 month-2, and then another one for 2 1/2.

I went to drop off some paperwork last week, and I happened to mention to the director that August is a long ways away...wink, wink. Then there was a moment of silence, and the next thing she said was, " If you want, Kylie can start next week and finish out the school year." I was in shock, excited, and overwhelmed all at once. Like could this really be happening....yay God!

Once I got home and Kylie was napping, the planner mom in me came out and I realized we were running low on time to get things ready for her first day of school. OMG, her first day of school in less than a week from the time we decided to make a go for it....can I really do this and feel comfortable about it in such a short time? Umm...I was stressed for sure, but we did it!

We had therapy on Friday last week, and we tried to schedule it at the school (didn't have the meeting finalized until the night before...more stress, that it was so last minute...totally not how I operate, but I was trying to go with it), so they could meet with her teacher and director to help go over all things Kylie :)

Anyway, a couple hours before the apptmt, Kylie's therapist called to say that we can not meet at the school. I was kind of in a panic mode because it didn't follow the plan I wanted to have before Kylie's first day of school....granted it was a last minute plan, but it had to happen, right?

So I call the director and explain to her that since we didn't have release of info paperwork done that we would not be able to meet at the school for her therapy. I was worried she would say that we were so high maintenance that we should go somewhere else. She is so great, and said it would be just fine if Kylie and I came right over to look at her classroom and for me to take pictures to make a social story for Kylie. Yay, it went well. I was totally stressed, worrying about how we weren't able to meet with her teacher, and if that would greatly impact Kylie on her first day.

Here are some of the preparations for Kylie's 1st day at school:

Some pics from the social storybook that we made for Kylie. Matt and I read it to her before bedtime, in the morning before school, and I let her read through it in the car on the way to school. It really helps her and gets her comfortable and excited about going to school.

Here is the lunch bag that she picked out. They want everything to be labeled, so I made a tag for her bag.

This is her super cute Mouse pack that she won from Trevor's blog.

I had to bring a crib sheet, that they cover the mats with for naptime....I did an iron-on cupcake and then ironed her initials on it too :)

So all of that leads to today....

Kylie's 1st Day of School!

Here she is: The big girl ready for her first day of school! Checking her email before we get going :)

Trying to figure out how to get in her lunch bag to see all the goods in it. I put a surprise in it too...a picture of her and her daddy fishing! I thought this would be a good way to get her talking with her teacher and classmates. She tends to open up better when she has something like this to share.

Trying to cram her backpack with toys, and she was not so thrilled when I tell her we can't take toys to school, because they have lots of toys there.

Yep, she was running into the school! I think she thought that she had to hurry up and get the toys she liked best when she saw that other kids were going to school too.

A beautiful picture that I got when she found a piano to play! Love this little girl!!

Kylie was playing with some Play-doh when I got there to pick her up. Something she doesn't to play with at home, because the smell of it makes me sick....yay for school!

Kylie's bin with her naptime things inside. She was so proud of her own bin, that she was showing it off to the teachers in her cute!
Kylie showing her teacher the social story that we made for school.

So how did the day go?

Well, we got there early so I could talk with the teacher for a bit. The great thing about Miss Ginger is that she has a Master's in Special Education, and has taught Special Education for over 24 yrs! What a perfect first teacher for Kylie to have....she won't have her in the Fall, so this is a great way to get started!

When we first walked it Kylie was a bit overwhelmed and stressed, and almost immediately laid down on the floor upon entering the school. Just too many people moving around, and realized that she wasn't the only one there. After a couple minutes she got up and ran into the classroom.

Miss Kelly, the teacher's assistant, was showing me the sign in sheet, and I looked back to see Kylie watching me and I just didn't know what to I take some more pics, so I can show her and remind her how fun school is, or do I just leave?

I left, and went to the director's office to drop off the last bit of paperwork, and told them that she did well and didn't even cry, so I thought I should. I started to and got a hug from the admin, and they encouraged me to just go for a walk at the park or go home and just sit down and listen to the quiet house.

I went back in the afternoon to peek in on her and I wanted to cry when I saw how well she was proud momma! They told me she was all excited to go on the playground and was having a really great day. She even told Miss Kelly that she needed to go potty when she was outside on the playground. That is huge, because she doesn't like to tell us she needs to go tell a new person that she needs to potty, and to break away from something so fun is big step! She also ate almost all of her lunch...another huge thing, because she doesn't like to eat well around others.

They started to get the kids ready for naptime while I was checking in, and Kylie started to cry when they said it was time to lie down. I felt so bad, because this was so much newness at person telling her to sleep, new place to sleep, a room with other people in it to sleep, and they turn the lights out to sleep (she has 2 nite lites plus the lights on dim).

I guess she cried for about 5 minutes, and the teacher and assistant took turns sitting with her and then she slept for 45 minutes. They also opened the shades a bit, because she got upset that it was so dark. I think I will send her Glow Worm next time, so she can squeeze it if she gets upset.

We were the last ones to leave, and not just because I was trying to get all the details about her day, but because she didn't want to leave...I think that is a good sign!

Oh, and Annie was very happy to see Kylie when she got home from school. The poor pup seriously moped around all day...even went by the door outside Kylie's room and wimpered. All and all it was a great day for Kylie :)


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