More time in the Hospital

I am sorry that I haven't written in so long but alot of good things are happening now.  First, you only use your ventilator at night and all of your doctors think that you will get your next scheduled surgery before Christmas.  That is good news.  After last year nobody wants to be in the Hospital for the holidays.  Second, you started therapy about six weeks ago.  You go 3 times a week and you get physical, occupational and speech therapy.  You are becoming more playful and active.  Last, you got glasses. Mommy and daddy have glasses too, but you look so cute in yours.
For now however, you are in the hospital to get your heart and lungs checked out.  They think you can go home after 2-3 days.  I Love you Anita.

A quick stay at the hospital.

Last week you had a few short seizures.  We had to take you to the hospital, but it was your favorite hospital.  The nurses and doctors there had not seen you since October and I guess they were talking about you last week.  You had everyone come visit your room and they were all so surprised at how big you had become.  The doctors just added a new medication and you only had to stay for two days.  Everything is alright and you will see your neurologist soon.  Otherwise you are doing great, being off of your ventilator for 8 hours a day and 10 hours a day staring tomorrow.  I love you Anita.

One Year Old!!!

On Monday you turned One Year Old!  That was a very special day for the whole family.  We are so glad to have you in our life.  We had a party and alot of friends and family came.  Even more sent presents and cards for you.  Everyone knows how special you are.
Another step came last week.  You started going off of your ventilator for 2 hours every day.  You only need an "artificial nose".  This week it is 4 hours every day.  Every week we will increase it by 2 hours a day. That means that, if you can handle it, you will be off of the ventilator in less than 3 months.  The doctors can then decide when to do your next heart surgery.  Otherwise you have been very healthy.  You even got your first dentist visit yesterday.  You are growing so fast I can't even believe it.  I love you Anita, Daddy.

First Easter

Today was your first Easter.  This is a very special day that you will learn more about as you grow up.  We had a friend who is a professional photographer come and take pictures of you in your first Easter dress, as well as some pictures of the whole family.  This was the first time that we had formal pictures taken of our family.  You were able to go without your ventilator for almost an hour.  You have been getting stronger and going off of your ventilator more and more every day. You have been out of the hospital for over two months and staying healthy.  Your doctors are all very impressed.  The brain surgeon said that he thinks he fixed you in Corpus Christi and won't need to see you again.  You love all of your nurses, especially when we don't have one at night and daddy stays up and watches movies with you all night.  Your first birthday is in just over two weeks and we are going to have a party for you.  You will then be ONE YEAR OLD!!!  Mommy and daddy are very happy to have you in our lives and we do everything for you that we can to give you a good life.  I love you baby girl and will write again soon.

It's been a while

It's been a while sweetie, over a month in fact.  That means that this is the longest that you have ever been at home without being admitted to the hospital.  You also saw your pulmonologist (lung Dr.) today and he told us to reset your ventilator so that you beath more on your own.  That also means that you can have your next heart surgery soon.  Mommy and daddy are very happy and love you so much.  You are starting to act playful now and have a few favorite toys that you like better than others.  You are so strong that last night I tried to sit you up and you stretched your legs and stood (with my support).  We just love you every day and do everything to help you catch up.  You are becoming so big.  I love you Anita, Daddy.

March already!

I just realized that it has been 2 months since I wrote in here.  Since then alot of great things have happened.  First, on January 31 you got to go back to Driscol Children's Hospital in Corpus Christi.  The doctors there started turning down your ventilator and making you breath on your own more.  You need to breath on your own to get your last 2 heart surgeries.  Then on February 14, Grandma and Grandpa McCone got to see you.  Later that day you had another operation to "drain your brain".  The surgeon said everything looked great.  Then on February  22, WE ALL CAME HOME.  You get more nurses now, but sometimes we don't get one at night and daddy stays up and takes care of you.  You have stared getting your days and nights straight again and usually sleep at night, unless you want to party with daddy.  You started seeing your doctors again, and they are happy to see you.  You are now almost 9 pounds bigger than when they last saw you.  You are also getting a few new doctors.  The best news though is that your pulmonologist (lung doctor) has been helping make you breath on your own more by turning off your ventilator for a few hours a day and you are doing GREAT at breathing on your own.  You are so strong that I think you just want to prove the doctors in Houston wrong.  For now we are all just happy to be home.  Your Uncle Gene (whose daughter you are named after) came down from Oregon to see you and loved how cute you are.   You also have your own room now with a new and colorful hospital crib and mommy put fishies, jellyfish, and other sea creatures hanging from the ceiling.  We hope to stay home for a long time now and only go to the hospital for planned operations.  For now we just enjoy every day (or night) that we can with our special baby girl, you.  I Love You Anita, Daddy.

A Whole New Year

I know it has been a little while since I wrote and a lot has changed.  For one, it is now a different year, 2011.  You have been getting much more healthy.  You got a surgery to remove extra fluid in your brain left from your stroke (which was a success), you got moved out of the Pediatric Intensive Care Unit (PICU) and into your own room, mommy and daddy moved out of the motel and into your room at the hospital so we can all be under one roof all of the time.  The nurses are helping mommy and daddy take care of your daily trach care and suctioning to keep your lungs clean and clear.  The doctors are also helping get you to a hospital close to home so we can be back home soon.  I can't wait until we are back home, but even sleeping in your room every night is a step closer.  I love you so much I can't even say.  I Love You Anita, Daddy.