BENEFIT SONG AND VIDEO

As you can see, Emmalin's first benefit is coming up very soon!  When it came to putting it all together my sister, Jessica, has done it all.  I have offered to help many times and her response is always to just focus on Emmalin and that she will take care of it.  She also says that she wants to do this for her niece.  So, as the time went on, I would ask every now and then if she needed any help.  She said she needed me and Jarrad to do two things and they were to put together a song and video to play the night of the benefit, and again she said that she would take care of the rest.  

Well, Jarrad hasn't taken this request very lightly.  Jarrad decided to write an song.  I helped come up with the lyrics, but Jarrad did everything else.  Once we got everything recorded we sent it to Jarrad's brother, Corey, to help mix it.  We just got the song back last night.  I wanted to post the song on here right then, but Jarrad wants me to wait until we have the benefit.  I am SO proud of Jarrad!!  He worked so incredibly hard on this and this song is something that I know that we will cherish forever!

We also put together a video of just pictures and words to go with the song.  We then sent that to Corey so that his friend could put it together for us.  We are supposed to have it back by the end of the week and we are so excited!  I will post the finished video/song once the benefit is over.

My sister and Corey have helped us out in such different, but HUGE ways!  I don't know what we would have done/do without them!  Thank you both SO much!!!  We wouldn't have been able to get this far without you and all of your help!  We love you guys!

SLEEP / NO SLEEP

My Sweet Baby Girl!

Emmalin has a VERY hard time sleeping or I guess I should say staying a sleep!  After putting her to bed every night, it either takes her about 20-30 minutes to fall asleep or she only sleeps for about 20-45 minutes and then wakes up.  Either way it starts out, the other one always follows and she does this on and off until around 11:30pm-2:30am (most of the time).  I blame a lot of it on her teeth right now because she is cutting two eye-teeth, but this just seems to be Emmalin's pattern a lot (it's just a little more extreme when she's cutting teeth).  So most of the time when she does this I let her stay in bed.  We have a video monitor, and so I watch her the entire time on it, but try not to go in there.  

Em wide awake when she was supposed to be sleeping!

Tonight I couldn't help it, her teeth must be moving a lot, because she was wide awake in bed for an hour and fifteen minutes (not fussing, but just awake and happy).  So I went in there, and there she was wide awake and talking.  I couldn't resist, I picked her up, got her some milk and rocked with her in our rocking chair.   I LOVE these moments with Emmalin!  

I have to say that there is absolutely nothing better than cuddling with your baby!                                            I LOVE being Emmalin's Mommy!  

BIG GIRL CUP

Just thought I would let everyone know that as of last Friday, September 17, 2010, Emmalin officially switched over to a sippy cup (her big girl cup).  She will only take one kind, but I don't care.  I am a happy momma in the world right now!!!  I am so proud of her!  




Thank you Kristi and Luke for finding the Nuby 3 Stage Non Spill Feeding System and thank you for telling us about it!!!

A LITTLE STORY ABOUT WHAT IT IS LIKE TO HAVE A CHILD WITH SPECIAL NEEDS

One of the amazing women, named Tara, that I met that last Saturday night  invited me to read some of  her daughter's blog about some of the intensive therapy that she has done (because I'm starting to research about it for Emmalin for next year).  While I was reading about all of that, I ran across this poem/story.  I thought it had a very different, but incredible, way of explaining what it feels like to have a child with special needs.  So as she decided to share this poem/story with all of her friends and family, I too would like to share it with all of you.

Welcome to Holland

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.......................

When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland".

"Holland?!?!" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy!"

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there far a while and you catch your breath, you look around.......and you begin to notice that Holland has windmills....Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.

But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

I am so thankful for for my faith and the people God has placed in my life who started their own journey with their children before us. You have all been so supportive and I appreciate all the valuable wisdom you have give me.

AMAZING WOMEN

Last Saturday night, I had the honor of meeting 5 amazing woman who also have children with special needs.  I was invited by a friend, named Kristi, that also has a child with special needs.  Before this night, I have never done anything like that.  Yes, of course I have been out to eat before and visited with other people.  But it was the first time I have ever went to "visit" with complete strangers and felt/knew that they understood where I was coming from on so many levels.  There were not two children that were being "represented" that had the same thing.  But as many of the others, I was able to relate with something that Emmalin was doing or has gone through with each child.  It was an amazing experience!  I feel SO blessed that God has allowed my path to cross with so many inspirational woman!  This "group" meets once a month, and I have to tell you that I am already looking forward to next month!

MAKING MORE IMPROVEMENTS

Working hard with Ms. Joyce

Like I said n my last post, Emmalin got off the diet last Tuesday, September 7th.  That following Friday (the 10th)  Emmalin's head control improved a little more!  It's still not  completely there, but it is SO much better than it was!  

Look at that head control!

Practicing Siting Up

Also, Emmalin can sit up using her hands to hold her up (propping) for about 20 seconds (this started Tuessday night (the 14th).  This is still not where she was before we started the diet, but before the diet, but she couldn't do this at all until Tuesday night!

Working on Sitting on Her Side

WE ARE SO PROUD OF HER!!!                                                                   GOD IS GOOD!

OFF THE KETOGENIC DIET

Eating Spaghetti

Wow, sorry it has been so long since I have posted something.  So much has been happening since Emmalin got off of the diet last Tuesday, September 7th (at lunch time).  Since last Tuesday, Emmalin has been blowing us away with the progress that she is making and continues to make in the eating/texture area.  We went to see a feeding specialist on Friday to get an evaluation done and while we were there, Emmalin had her FIRST EVER piece of a whole green bean.  I COULDN'T BELIEVE IT!!!  She has never been able to tolerate something like that!!!  Before the diet and while she was on the diet, she could only tolerate a little above stage 2 baby food.  When Jarrad got off work that night, we made Emmalin some spaghetti (for the first time ever) and took pictures and videoed Emmalin eating green beans and spaghetti.  I know it probably sounds a little extreme to be videoing that, but it was a HUGE deal!!  Anyway...  so Emmalin is now eating some solid soft foods.  This is as far as she will go, but it's incredible!!!  We will stick with these types of foods for a little bit and then try to push it a little more until we get to regular table food all the time.  I can't wait!!

At Applebee's Eating her first meal at a restaurant!

Drinking water for the first time and not gagging!

Also, Emmalin drank water for the first time last Friday, September 10th.  Again, this may not seem like a big deal, but she has never tolerated water before.  She would ALWAYS gag when I would give it to her.  So this is another HUGE milestone that we have crossed over and we are so incredibly excited about it (if you can't already tell)!!