Saturday, November 27, 2010

One of many!

Alex had his very first field trip last week! I bundled him up. He blew on a whistle before getting on the bus.

Sat on the bus for the very first time.

Sat in front of his schools Christmas tree at the festival of trees.

And was even a part of the decor!

A many of firsts to come!

Friday, November 26, 2010

Wednesday, November 24, 2010

Help me spread the love this Christmas!

Its that time of the year again! I will be heading the the Cardinal Glennon NICU where Alex spent the first 6 weeks of his life, delivering ornaments to the babies who are sick, and who were born much too early. I cant do it without you though! If you are interested in helping, email me at and I will let you know how you can help!

Click here or here to see visits from the past!

Have a Happy Thanksgiving!

Tuesday, November 23, 2010

2/2007 Fremd High School R Word Speech - Fan Community Video - Be a part of it!

Welcome Turner 7th graders!
As you begin learning about genetics, I hope you also begin to love those around you with intellectual differences.
My son Alex is amazing, you will find that out!
I cant think of a better way for you to start reading this blog than with this video.
He says it best! Don't ever forget his message.

2/2007 Fremd High School R Word Speech - Fan Community Video - Be a part of it!

hi dad! (7th grade science teacher)

Sunday, November 21, 2010

Benvenuto in Italia

The poem Welcome to Holland is a pretty way to describe what caring for a child with special needs is like. As pretty goes, it leaves out the ugly side. The surgery, the near death experiences, the medical issues. It leaves out the hard stuff like communication issues, therapy, and doctor visits.

I have always appreciated the Welcome to Holland story, but to be honest, I haven't ever really liked it. At first it was because I didn't want to be in Holland. It came as a shock to hear that my third born had Rubinstein Taybi Syndrome. I didn't want this for him, and lets face it, I didn't want it for me either. So I wrote "crash landed "and in that moment I was satisfied to tread the ocean waters, and never make it to shore, cause I was not going to Holland. The pretty little way it was trying to describe my life was a lie.

Time passed, and I thought that I had grown to love Holland, things were good, I had confidence that I could do this, and there wasn't a thing I didn't love about my Alex. I thought I had taken my place and settled into the roll as a special needs mom.

Time passed some more, and I now realize that the reason I still don't quite feel like I can relate to the Holland story is because I'm not there. I made it to Italy, that is if Italy means having a child, loving that child with every part of my being, advocating for him, teaching him, caring for him, just being mom to him, like I do for all my children.

Alex is no different than my other children. Or he is just as different as Noah is to Joel, as Max is to Noah. All my kids are different because everyone is an individual. Everyone learns different, every one has their medical story, everyone sees the world a little differently than the next.

So, I appreciate the Holland story. I understand that it was written to express the beautiful side of parenting a child who is intellectually different. I cant settle for that though, and I want everyone else to know that when I really look around at the scenery here in my home, I'm in Italy, just like you. We all made it there. We all have the momma bear, the warrior mom fight in us. If you love your kids, you made it to Italy.

I am a better mom, a better person because of Alex. He has taught me things I could have never known without him showing me, however, our plane didn't land in a place reserved for the untypical. We are very much a part of the world. I will do all I can to make sure Alex is seen as a person who contributes. Who loves, and who very much lives in Italy with his family, and the rest of you.


-Jessica Pruitt

Saturday, November 20, 2010

Slow, snotty, Santa Saturday......

We always seem to be going and doing. Soccer, wrestling, school.
There is always something. So when a nothing to do Saturday came along, some of us stayed in our pajamas.
All of us have snot.
And two of us got an early Christmas gift!
Max and Alex love their new play gym. It was too big to keep a secret, and there are only a few warm enough days left to play on it, so Santa stopped by early. He is good like that.

Alex loves going down the slide! He is also very good at climbing back up the climb side with just a little help. This is sure to make him stronger!

Hope you all have a slow Saturday too! Maybe without the snot, though I doubt it, and maybe a little Santa too?!

Monday, November 8, 2010

Happy Hour!

Come on over for drinks!
Or to watch Alex drink that is!
Any consistency be it thin or thick, yes thin can be swallowed!
Flying colors were spotted, this boy got a 100% on his swallow study!!!
Words like normal, and perfect were used.........
I can not tell you what burden has been lifted.
He can drink safely, as much as he is willing. The willing part is a whole other battle, but it wont make him sick!
He has a normal swallow!
From NPO to normal swallow!!!!

Thank you Doctor Miner for your thorough care, and sending us to Cheri!!
Thank you Cheri for seeing potential in Alex, and loving him, and not treating him like just another aspirator who wont ever swallow safely!

All this work, all this time, and we are here, he can safely drink!!!!!!!!!
It is happy hour every hour at our house today!

Sunday, November 7, 2010

Flying colors

Is how I hope how Alex passes his swallow study tomorrow. Flying colors! A+. No aspiration, not even the smallest amount of penetration of the airway.

I'm nervous. In fact, I'm beyond nervous. I'm afraid that some bump will come along and change this smooth sailing the boy and I have been on. Routine, yes, I thrive on it. If someone says this and this has to change in our eating habits, well, I may throw a fit, or at least stomp a foot.

He hasn't had a swallow study since March of 2008 Yes, that picture is from March 2008. Wasn't he scrumptious? Not because he didn't need one, but since he wasn't getting sick I held onto the ignorance is bliss philosophy and hoped all was well.

So, hoping for flying colors. Hoping for improvement, and progress in getting this boy to drink.

I still think ignorance is bliss, but you cant move forward being ignorant.