Crack me up!!

I know people always talk about how funny their kids are... but Jackson just cracks me up!  He has found a new phrase and uses it all the time.  We have no idea where he heard it or got it from!  He used it the other day standing on the side of the pool and said "Mommy look, Mommy look!"  Finally I turned to pay attention and he screams "I LOVE YOU IN MY LIFE!"  and jumps in.  How can you not laugh hysterically at that.  He says it all the time.  To Lily Kate, Justin, Lucy our dog, the neighbors... everyone.  And it is not just said but yelled!  I ask him "where did you hear this" or "why do you say that"  and his nonchalant answer is always "for I just do."  I mean really Mom no big deal I just love you in my life.  He is so full of life, his teachers would probably tell you he is full of something else but I choose to approach it this way.  He approaches everything with such intensity.  He either LOVES YOU IN HIS LIFE or he is SOOOOO ANGY AT YOU.  Seriously, this is what he says to people... me, the lifeguard, his bff Jakey,  "I am so angry at you!"  I guess it is better than physical force. Oh lord the days we have ahead of us with this one!

Technology

So we bit the bullet and bought a desktop computer... I love it!  We went Mac, not that I am so tech savvy that I have to do cool stuff with pictures or record my own music I just like it better and their commercials are great.  Jackson seriously loves it too.  He is hooked on playing the Noggin games and has also figured out how to print stuff.  How do they catch on so quick?  I was feeling so technologically cool that I also did up a facebook page.  Not sure if that is correct grammar but either way I did.  I only have 12 friends... No one knocking down my door! I think half the people on there just do it to legally spy on others!  Me too!  

We also bought Lily Kate a new bath chair which is working out well especially when Jackson gets in with her.  She does love her brother but only when she wants to!

An Answer is Found

After two years of countless tests, scans, surgeries and prayers we were finally given the news we have long awaited. Lily Kate's CDKL5 test came back positive. She has a mutation on this gene. Deep breath. In so many ways this is such closure to finally know what exactly is going on with our little girl. At the same time it is something you would never hope for. Justin says the diagnosis doesn't matter because it changes nothing about how we love her or how we are giving her everything we can to be better. He is right. It does however give me a group to relate to and a group of other mothers that understand exactly what I have been through and will continue to struggle with. She truly is a joy. This genetic condition affects a very small number and only girls. Around 50 cases have been diagnosed in the world. They believe there may be a total of 200 but the test is so new that many have not heard of it. Please feel free to check out the website www.cdkl5.com to find out more. I began feeling like a pro when dealing with doctors, hospitals and such but now I have been thrown back to the minors with this. One day at a time we will learn. Thank you all for caring. Much love!

And we're back

We loaded the car and headed back west yesterday morning. Me, Jackson, Lily Kate, Lucy and the several hundreds of dollars worth of toys that neither of my children needed drove 11 hours back to Houston! It really wasn't as bad as I thought it would be. Although I received many pity looks when I was carrying Lily Kate and trying to keep Jackson confined, especially when I loaded both of them in and then got Lucy out of the back. I could just see the words running through some of those old ladies minds, "Oh bless her heart...". Ha! But I did it and not only that I did it well! I made the same time, maybe even a little faster, than Justin and I driving together! Most importantly we had a great time with my parents. Even when Jackson pulled stunts like calling Boss an idiot. (I don 't know what he was thinking) It did make me feel better when the next day in the car he said "Mommy, what does idiot mean?" Followed by me explaining it and his response was "Oh I didn't know that." Believe me he quickly learned after saying it that it was the wrong thing to do!
We are now back in the swing of things here. LK is back in school and Jackson will be going on Tues and Thurs. I woke up this morning and felt no rush to get somewhere and leisurely made lunches and got dressed. Oh I love not working!!

Celebration!!

There are many things we celebrated this past Saturday... The fact that we had our entire family together is a major one!  Bill also became engaged to his girlfriend Angela!  And last but definitely not least Lily Kate turned 2!!!  We had such a great weekend.  Jackson was his usual self, catching lizards, bugs and butterflies and having so much fun playing with his cousin Addie. Ofcourse, I think they must have gotten the wrong invitation because someone led them to believe it was a costume party! 

This trip was definitely needed.  It is so relaxing to be at my parents house.  You know when you are just in a place where you feel safe and loved, that is here for me. With a huge yard for Jackson to explore and two more sets of arms to hold and cuddle Lily Kate, who could ask for anything more!

Update on Tater

Just realized we really haven't sent out any mass emails about Lily Tater since her last surgery and wanted to give a quick update on how our girl is...

She is enrolled in a wonderful school, The Arbor, and she loves it. She receives constant therapy there from the occupational, speech and physical therapist along with her two teachers which are trained by the therapists. We have seen so much growth. She is drinking from a straw and can sit up on her own for a few minutes. She is verbalizing a lot more and we love it! Always laughing unless she is hungry or wants to be picked up and cuddled! Still no seizures since January 2!! She has had a few more genetic tests run and one has already come back and was negative, this one was for Rett syndrome. There is sitll one we are waiting on and it is for a genetic syndrome called CDKL5. It will probably be about 3-4 weeks before we hear anything. As always she lightens our days!

And we return...

We have made it back safe and sound! It was a wonderful trip. Gorgeous weather, beautiful scenery and great family to enjoy it with. Although, I don't think I would do the plane ride again with 4 children under 4!! The obvious highlight of the trip was Whitney's wedding but we also got to enjoy the beach, Sun River and Bend. Oh and did I mention snow in May... yes snow! Lis was able to catch so many good pictures of the kiddos and a few of us adults as well! We are home for two days and one night and then off to Gamma and Boss's for 10 days!