1ST BIRTHDAY

IT IS SO HARD TO BELEIVE THAT LITTLE E-DOG IS A YEAR OLD. THIS LAST YEARS HAS BEEN SO BUSY WITH SURGERIES AND SOCTOR APPOINTMENTS I FEEL IT WENT SO QUICK. IT IS AMAZING TO LOOK BACK AND TO REALIZE HOW MUCH ETHAN HAS GONE THROUGH IN A YEAR, MORE THAN I HAVE BEEN THROUGH MY WHOLE LIFE. IT MAKES ME SO PROUD TO THINK OF ALL HIS ACCOMPLISHMENTS, AND TO SEE HOW FAR HE HAS COME.

ONE OF MY FAVORITE DAYS WAS JANUARY 4TH WHEN ETHAN GOT HIS G-TUBE OUT. LOOKING BACK AT THE FIRST 3 MONTHS OF LIFE WHEN MY POOR BABY COULDN'T EAT SEEMS LIKE SO LONG AGO. I LOOK AT HIM NOW EATING HIS BABY FOOD AND SUCKING HIS BOTTLE DOWN AND COULDN'T BE MORE PROUD.... EATING WAS DEFENITLY ONE OF OUR HARDEST OBSTACLES SO FAR, BUT HAS MADE ME REALIZE ALL THE THINGS THAT WE TAKE FOR GRANTED.


ANOTHER ONE OF MY FAVORITE DAYS WAS RECNT WHEN HE GOT HIS CAST OFF. THE SPICA AND HIP DISLOCATION WAS SOMETHING THAT WE WEREN'T PREPARED FOR, IT HAPPENED SO QUICK.  POOR ETHAN HAD WORKED SO HARD IN THERAPY TO GET STRONGER AND THEN SUDDENLY THE SPICA CAST TOOK THAT ALL AWAY.... IT WAS HARD TO DEAL WITH AND HARD TO THINK WE WOULD HAVE TO START ALL OVER. NOW THAT HE IS OUT OF HIS CAST HE SMILES MORE AND IS SUCH A HAPPY BOY. HE WORKS SO HARD AND THERAPY, AND CRIES EVEN HARDER, BUT ONE DAY HE WILL REALIZE IT IS FOR THE BEST. FOR THE FIRST TIME HE REALIZES HE HAS LEGS AND IT IS SUCH A JOY TO SEE HIM KICK  THEM AROUND.

IT IS CRAZY TO LOOK BACK AT PICTURES AND SEE HOW MUCH ETHAN HAS CHANGED IN 1 YEAR.... I THINK HIS TEETH AND HIS HAIR HAVE REALLY CHANGED HIM. YOU CAN TELL HAVING SOME MUSCLE TONE HAS CHANGED HIS FACE, AND THE GROWTH HORMONE HAS MADE HIM TALLER.  HE LOOKS LIKE A TODDLER, INSTEAD OF A BABY.

WE HAD A GREAT TIME ON HIS BIRTHDAY, SINCE HE HAD JUST GOTTEN HIS CAST OFF KEV AND I DECIDED TO TAKE HIM SWIMMING FOR THE FIRST TIME..... HE LOVED IT. THEN WE WENT HOME AND HE GOT TO OPEN ALL OF OUR PRESENTS AND PLAY WITH THEM THE REST OF THE DAY.

THE NEXT DAY WE HAD HIS BIRTHDAY PARTY WITH BOTH SIDES OF THE FAMILY. HE GOT SO MANY FUN GIFTS, AND GOT TO EAT HIS FIRST CUPCAKE.

AT THE PARTY I THOUGHT BACK TO A YEAR AGO THAT DAY, I REMEMBER IT LIKE YESTERDAY, THE EXACT SAME GROUP OF PEOPLE WERE ALL WAITING IN THE WAITING ROOM FOR ETHAN MAC TO JOIN THIS WORLD. IT IS CRAZY THAT IS WAS ONLY A YEAR AGO WHEN I HAD THAT SICK FEELING IN MY STOMACH AND WAS NERVOUS MY SON WASN'T GOING TO MAKE IT. IT SEEMS LIKE LONGER THAN A YEAR AGO THAT THEY WERE TRANSPORTING HIM TO CHILDREN'S AND WE HAD NO IDEA WHAT WAS WRONG WITH HIM.  I WAS TRYING TO THINK BACK TO OUR MONTH STAY AT CHILDREN'S AND REMEMBER HOW FAR ETHAN HAS COME. HE WAS SO SMALL SO LIFELESS AND SO HELPLESS.... I LOOKED ACROSS THE TABLE AT HIS PARTY AND HE WAS LAUGHING WITH DADDY HOLDING HIS HEAD UP SITTING PRETTY WELL AND ENJOYING HIMSELF. IT IS HARD TO BELEIVE THAT HE IS THE SAME CHILD THAT I ONCE WASN'T SURE WAS GOING TO MAKE IT. IT MADE ME REALIZE HOW LUCKY WE ARE  AND HOW MUCH JOY HE HAS BROUGHT TO OUR LIFE.

IT IS CRAZY TO THINK THAT SOMEONE WHO HAS LITERALLY ONLY LIVED 365 DAYS CAN MAKE SUCH AN IMPACT ON PEOPLE, ESPECIALLY HIS MOM :)

Best Day Ever

So I think Friday was the best day we have had as a family in a long time. We got to the hospital at 11:45, for Ethan's procedure at 2:00pm. As usual our appointment got pushed back and they didn't end up taking Ethan until about 4:00pm. Ethan was not a happy camper because he hadn't eaten since 7:30 that morning...... So i figured from the way the day was going we weren't going to get good news.

Thank GOD I was wrong :)


The doctor came in before the procedure and told us we had two possiblities.
1. his hip will not be where it needs to be and we will get another cast for at least 4 weeks
or
2. his hip will look good in the xray and we would be getting the cast off and getting a 24 hour brace instead.  Having a brace on for 24hours seems like a pain too, but we were just excited we would be able to bath him and start therapy again.  ( this is the option we were hoping for)

About an hour went by and I started getting nervous, I figured he would be done sooner unless he was getting another cast on. Finally the surgeon came out and said " you are going to love me" my first thought was YES he got the brace!!!!! , then she continued to say " Ethan's hip looks so good that he only has to wear the brace at night while he sleeps" I was so excited, for some reason it seemed like this day would never come.


When we went back to see Ethan in recovery, I still couldn't beleive it. I hadn't seen his little legs for so long. They were so cute and so much longer than the last time I saw them. It was also really nice to see his little tummy again. For the first time Ethan has caught his break..... I couldn't be more happy.

Ethan on the other hand isn't quiet as happy YET. Of course his legs are stiff and he is in some pain. I don't think he realizes he is FREE yet. Once the pain goes away I know he will start movin like crazy and start to enjoy his legs again. I have notice that he is just in a better mood, and I think it is because he isn't so hot anymore.

From what they say is it take about two week before he is free of pain and stiffness, then we will start physical therapy again and hopefully get those muscles built back up.


I am just so excited for Eth that he can finally just be a baby again, and start to enjoy the summer :)

Sorry I need to Vent

Time for a little venting... I am not sure if people just don't get it but people just drive me nuts some of the things they say to me when it comes to Ethan

1. Can not stand the word Retard... I will be the first to admit that I was terrible with that word before Ethan and I would say it completly out of context, and would never actually mean it. But even before Ethan I would never say it around a friend or family member that I know has a son with a disability. I know 99% of people don't mean it when they say it, but come on have a filter. It shocks me everytime when I  will be holdinbg Ethan and people will say it and not even think that it could bother me. At that point it feels personal and it makes me sad to think Ethan will have to deal with this for the rest of his life.

2. When strangers come up and ask me what is wrong with my child.... We can not go anywhere without people constantly asking what is wrong with Ethan.... Sometimes I know it comes from a good place, but sometime you just want to go to the store, or home depot or a walk in the neighborhood without answering the same question over and over. Some times you just want to be a normal family without always explaining his cast, and why he is weak, and why he doesn't crawl, or say words.

3.When people try to tell me how lucky I am.....
So far I have gotten:

when Ethan was younger:
 "you are so lucky you can't breastfeed because it is so hard" really am I? am I lucky that I am feeding my child with a feeding tube?

or
when Ethan was younger:
" You are so lucky your son doesn't cry" Only people who have been where we have know how badly you would love to hear your child cry. We waited 4 long months before Ethan had the muscle tone to cry.

or

Recently:
"gosh you are so lucky your kid can't crawl or walk and you don't have to chase him around"  are you kidding me? you think I am lucky that we have to go through insane amount of Physical thearpy, and my son is in a body cast for a 3rd of his life and is getting further and further behind?

It just blows my mind some of the stuff that comes out of peoples mouths... what we are lucky for is that we have such an amazing little boy with a beautiful little heart. we are lucky that we were the parents that got such a special gift.

Say a little Prayer

So tomorrow Ethan goes back in for his cast.... We are praying that he gets put into a Rhino Brace instead of a 3rd cast. At the PWS clinic his ortho said there is a good possiblity that he will be able to go into a brace because his hip looked so good last time. Now that she has said that we have it in our heads and it will be hard to deal with if he comes out in a cast.

I told myself over and over "don't get your hopes up" but it is hard not to. Anyone who knows Kevin and I know we have like the worst luck ever so I am not counting on it. But it would be such a great birthday present for him.

The last few weeks he has been miserable he has not only been hot due to PWS tempature issues he has also been hot because of his cast. We are hoping he will get it off just so he can enjoy some of the summer without over heating.

I am so excited for the day that we can give him a bath and take him swimming, I am excited just to feel my little monkey's legs again. I am also excited that we will be able to give his shots in his legs again, it seems like the arms are a little more sensitive.

So please keep your fingers, toes and anything else you can cross crossed that we get this hot stinky cast off tomorrow..

Dolton Finley Carroll

She is here my sister Maggie and her husband Spence gave birth to a beautiful little girl.... We are all so excited for them and know they will be wonderful parents.

Dolton Finley Carroll
Born 7/5/11
12:03 pm

7 lbs 12oz, 201/2 inches long