Monday, March 22, 2010

Little J-apalooza!

Little J had a very busy schedule on Friday! This little boy was going and going like the energizer bunny! Why is it that all the fun stuff always seems to fall on the same day instead of being spread out through the month or even the week? LOL!

Friday after school, Little J participated with his class in his schools walk-a-thon to raise money for his school! He did a great job and completed 3 laps walking on his own
with some supervision from his teacher! All the kids had a great time!

The most exciting thing for Little J was his first little league t-ball game!

We had heard about leagues in other areas for little ones with special needs, but hadn't heard of any near us. One day I was chatting with Little J's PE teacher and he was telling me that they had been playing t-ball in his PE class and that Little J loved it! I told him we eventually wanted to find a league for him to play in. He then told me he was in touch with our local league and would be getting the information and would pass it on to us.

We had Little J signed up before the end of the week! This organization is so awesome! All the kids were out there in their uniforms, just having a great time!

The smile on Little J's face as he played with his daddy's help says it all! I think that was probably the most amazing and fun sporting event I have ever been to! The best thing was that the fans in the stands were cheering equally for both teams! The kids got so much joy out of playing and hearing all the cheering going on for them. Princess J had a great time cheering everyone on too! She'd hear all the cheering from the stands and she joined right in and tried (and most likely succeeded) at being the loudest cheer girl there! Hmmmm....I wonder where she gets all that cheering spirit?

The kids play every Friday night for about an hour or so. It was perfect! Can't wait for this Friday to get here and go to another game! Yay!

You know that means more photos to come!!!

Tuesday, March 16, 2010

Word Explosion!

Our little Princess J hadn't been much interested in talking immediately. She was a very good communicator, making up her own version of sign language to meet her needs. For example: If she were sitting in her booster chair and she wanted down, she intially would point to you, point to herself and then point to the floor as if to get me down! LOL! It was hilarious the things she came up with....but this also worried us.....
She started working with a speech therapist just after her 2nd birthday. After a few months, she got a new speech therapist and we are so thankful for all the hard work Alex has put in with our Princess J. Alex is amazing! Princess J adores Alex! Over the last year, she has slowly begun to use the last 2 months, we've had word and sentence EXPLOSION!
You all have probably seen the Family Guy commerical where Stewie is saying "mom" in as many different ways as he can be annoying...this is Princess J constantly....although it's not's the most amazing sound I have heard in my life! Her little voice and even the word "no" is cherished beyond measure. Don't get me wrong...there are those days where it's a bit grating on the ears, but I will never tell her to be quiet...except maybe to use the "inside voice" rather than crowded stadium voice. LOL!
When you have a child who doesn't meet their milestones and may never talk like our beautiful Little J, every milestone they do meet is a miracle....every milestone your other children meet is just as miraculous! We definately won't be taking any of it for granted!
Here are some of our favorite multiple word Princess phrases:
Stay Home!
Get out!
My Room!
Daddy Po Po!
Whole Bunch!
I Love You!
Love You Too!
Go Home!
My School!
How Are You?
I'm Good!
Wow Wow! (For Wow Wow Wubbzy)
Dora & Boots!
She can also count to 5 too!
So proud of her!

Sunday, March 14, 2010

A Curse and A Blessing.

What a tough week. This last week has left me drained. See that little spot on Little J's cheek? That little spot made me realize what a blessing my Little J is, but what a curse his diagnosis of Angelman Syndrome can be.
That little spot brought the fire department and an ambulance to our home. That little spot had us sitting at our local Emergency room for 5 hours. That little spot is only the aftermath. The cause of that little spot is burned in my memory and I see it everytime I close my eyes to go to bed. That little spot had me crying as silently as I could as I drove Little J to therapy the day after it happened.
Tuesday started out just like any other day. Little J went off to school and Princess J and Peanut J and I ran a few errends and played. We picked up Little J at school at his regular time and headed home for our afternoon routine. All the kiddos played and were having a great time. At 4:30, I started getting the kids ready for our evening routine and was getting ready to give the Princess her evening bath. I put Little J in his chair and had cartoons going for him. I got Peanut J in his swing to start his late evening snooze. I was heading down the hallway to start the water for the bath when I hear Little J start crying and Princess J is saying uh-oh over and over again. She didn't sound alarmed, so I was guessing she was tattling on Little J for doing some minor infraction to the Princess rules. Little J had a bungee cord in his hand and had placed the hook end in his mouth. At first I wasn't too alarmed I was going in to retrieve it from him, when I looked twice and realized that he had somehow pushed the hook through his cheek from the inside out.
Now that I've seen this, I can feel the panic rising from the bottom of my stomach, but I convinced myself to take a deep breath and try to relax. Little J is screaming and yanking on the bungee cord and Princess J is just standing there staring saying uh-oh. I didn't want her to get upset, so I just started trying to calm Little J down and keep him still. This was not working so well, as I'm thinking in my head what is the next best thing to do. I kept thinking that I've always heard that if you impale yourself with something that you should leave it in place until a doctor can remove it. While I was trying to keep Little J still, I managed to grab my cell phone out of my pocket and called 911. I just didn't know what else to do with this. Was he going to rip his cheek? How much was it going to bleed if it came out? How on earth was I going to get this out anyway? Keeping Little J from yanking on the bungee cord was not working out so well and finally he somehow popped it out, so while I was on the phone, I grabbed a towel and started applying pressure as I didn't know how much blood might come out. Thankfully, there was not a lot of blood, just a shocked and crying little boy and a freaked out mommy! I got Little J and took him to our front porch, since the fire department and an ambulance was on the way by now.
Thank goodness for our local fire station and the first responders who work there. They were AMAZING! They checked out Little J minimally so as not to freak him out anymore and they already figured that the hospital would be checking the wound. Since it wasn't gushing blood and he was alert, acting normal and breathing, they just stayed with us until G got home and I could transport him myself. We got through it all and Little J was an awesome little trooper. I on the other hand felt like I had just been nominated for worst mother of the decade award......
Here is where my curses and blessings come in. I hope I don't offend anyone by some of the things I'm about to say, but I feel I need to be candid here. Little J is an amazing little boy. He is beautiful, loving, sweet, tenacious, smart, determined and curious. We love him with all of our heart and wouldn't trade his sweet little self for anything on earth. I feel so blessed that he has the abilities that he does. I love that he sees something and never gives up until he figures out just how to accomplish whatever goal he has decided upon. I hate Angelman Syndrome. Not only do I hate the medical issues that AS causes...sleep disturbances, developmental delay, no speech and seizures, but I hate the mental deficiencies it causes. Most little ones learn not to do something either by being told not to do it and remembering that they were told not to do it, or by getting hurt doing something. They don't want to get hurt again and they realize that they should not do the same act again. Little J will not learn this way. I can almost guarantee with 100% accuracy that if Little J saw the same bungee cord again, he would once again pop it into his mouth. If I tell him no, he will stop for approximately 2 seconds and then be back at it again. Some days feel like ground hog day.....over and over and over.
In a nutshell, I am blessed by all the things that Little J can do, and I'm cursed by them all at the same time. I wouldn't trade the abilities he has for anything, but if I could get rid of AS from him, I would make a deal with the devil. I HATE it!
I've had a few people tell me I make it look easy. I thank those of you who have said that for the compliment from the bottom of my heart. I thank G for his constant support and love for our family too. It's not easy though. It's not easy for either of us. We love Little J and do what we have to do. We are abundantly rewarded with his sweet smiles and hugs and his amazing light of love....but it's hard and it's constant. I never ever want to see any of my children hurt, or in any kind of pain, physical or emotional. With Little J it's much different and I just can't find the right words to describe it. Maybe it's that I know he's going to rely on me much longer for so much more than his brother and sister will. Not only do we have to protect him from the world around him, but we have to protect him from himself as well. That's a huge weight on our shoulders and a responsibility that we don't take lightly and when we fail sometimes it breaks our hearts....