Quiet

I had a reeeeaaallllyyy rough night last night.  Daddy even had to help when my night nurse Heather tried for a while to get me to relax.  I was coughing up a bunch of congestion and we couldn't get my fever under control again.  Finally after a long time, I fell asleep.  I was so exhausted from all the seizures and respiratory distress that I slept, and slept and slept until almost 1pm.

Mommy was so afraid to move me since I was so peaceful that she waited that long to change my diaper!  I woke up and got changed, and coughed up a bunch of congestion.  See if you can guess what is missing from the following photo....

My TUBE!  I even got to spend two hours without my tube.  It feels so great not to have that thing down my throat and taped to my face.  Mommy and Daddy felt so awful because I had a tear in my eye when they were putting it back in:-(  I've had it in since I was one day old so I'm getting used to it by now.

The house has been so quiet this afternoon because my brother is not here.  He is up at Uncle John's and Aunt Marie's house since Mommy and Daddy are going to a work party!!  My nurse Heather is here to take care of me tonight and lets hope it is easier than last night.

Still sick

Last night was another battle.  I was even awake early this morning when my night nurse Beth was leaving and that is very unusual for me.  Mommy gave me an albuterol nebulizer and that seemed to help me along with my 6am Valium dose and I was able to fall back asleep, but unfortunately Mommy just stayed up and got ready for work.

Today was much of the same.  I am battling a fever that has a hard time going down, lots of secretions and all this seems to make my seizures 10 times worse.  My day nurse Ines was trying to get me to calm down for a few hours this afternoon and nothing seemed to help.  Mommy got home with my brother and I was just settling down probably because I was so tired from my afternoon.

I slept for a few hours at least and as we are writing this I am starting to have lots of trouble again.  I think it is going to be another rough night.

Cold

Not just outside, but I think I am getting a cold!!  Mommy, Daddy and Brody have all been battling a bad cold and I think it has moved to me now.  I had a really rough night and was awake having seizures and needing lots of suctioning,  My nurse had to give me morphine three times and that provided little relief for my respirations.

Today was pretty much the same.  My steam bath and a few nebulizers seemed to help me but overall I was awake and uncomfortable a lot.  I am also battling a fever too.

Mommy got home and gave me another nebulizer and that helped me fall asleep just in time for dinner.

Mommy even got to get a few tripod shots of Finnegan and Brody!  My brother's two favorite things now are "playing" the guitar and making race tracks with his train tracks.

Lost footage

Another "average" evening and day today.  It's strange but I haven't had a medicine change in at least a week!  Mommy and Daddy are usually updating the nurses each week with my medicine changes, so they have all been pleasantly surprised by that and my new room setup.

I was awake when Mommy and Daddy got home this evening so we had a quick dinner and clean-up.  I needed lots of suctioning and Daddy gave me hyocyamine hoping that would help but I'm now giving my night nurse Heather a hard time.  My fever is starting to creep back up so she was going to try some Motrin to see if that might help.

Mommy didn't get a chance to take any pictures today, but we did find some "lost footage" from last week.  Brody woke up early and was giving me lots of love and attention.  I love my big brother.

Today was another good day for me and I was totally relaxed in my new room...speaking of my new room, check it out!

I love all the music and lights of all my new crib toys.  Mommy came home this afternoon and I was awake having some trouble and she re-positioned me, suctioned me and turned on my music mobile and I drifted right off to sleep again!  Plus, my crib is right next to the window so I can even look outside and get the afternoon sun on me:-)

We also got a few pictures from Auntie Caryn who is Mommy's amazing photog friend.  She came over the house on Saturday before her baby shower and took some photos for us.  Here are a few of her favorites:

Kicked 'em out!

It was a busy bustling day in the Shea house!  This morning started off with a warm bath and some exercises and then the work began.

Mommy and Daddy finally decided to partially give up their room and let me use it most of the time.  Prior to this evening, the nurses and I are usually in the family room which really isn't the most ideal spot for me to be.  So, we did a little re-arranging and managed to keep Mommy and Daddy's bed in the room along with the dresser and one side table while moving in my crib and a comfy chair for the nurses.

We worked on the room all day and after my nurse Heather arrived, we moved the last thing into the room....me!!  It was funny because I was awake and having respiratory distress until Mommy laid  me down in my crib.  I loved all the new colors, sounds and toys.  We will try and get a good picture of the room tomorrow.

Busy

Well it has been a busy few days and Mommy had thought she posted but something is malfunctioning with her cell phone posts.  I hope everyone has enjoyed their thanksgiving holiday!  I was ok on thanksgiving but gave Mommy and Daddy a really hard time that night.  Mommy held me for most of the night and I have been battling a fever ever since.

Daddy and Brody hit the slopes on friday with the neighbors and had a lot of fun.  Next time Daddy will wear skis and tackle the big slopes with Brody.

That evening Mommy, Daddy and Brody went over a friends while I stayed home with Marsha.  I had a pretty good day and evening which made everyone happy.

Today I got to say hello to my Auntie Caryn who is visiting from Texas for her baby shower.  She took lots of photos which you may get to see tomorrow.  Mommy took a few this morning during and after my nebulizer treatment.  It totally relaxed me and Mommy was able to get a good picture.  you can see how much I am growing in my second photo.

I stayed home today again with Marsha while everyone went to the baby shower for Ryder.  We all can't want for baby Ryder to arrive here from Korea.  It will be such an exciting time for everyone!

Brotherly love

Mommy was looking at some photos today and she saw one she hadn't seen in a while and it reminded me of how much love I get from my big brother.

This photo was taken on February 12, 2011, almost one month after I was born and just after my very first night at home.  It was very late when I got home on the 11th so I didn't get to see my brother but he was so excited to wake up and find me at home!

Even though we can't play together he will bring me my favorite animals and blankets.  He kisses me goodbye every morning before he goes to school and kisses me goodnight every night before he goes to bed.  If I am lucky I even get a big brother hug.

I am resting peacefully with my night nurse Darlene.  The meds seems to working although I am showing some signs of Valium break through.  Mommy will be home tomorrow with Brody so she will help figure out if I may need another Valium increase before we head into the holiday weekend.

Hiccups

Minus the stress of pooping, I had a great night last night.  Mommy talked to Dr. Gien again this morning and he had consulted with a few pharmacists and they all agreed we should stick with the higher dose of hyocyamine.  We were going to try a new drug but the side effects are the same and I am already responding well to the hyocyamine so we are sticking with it even though my dose is much higher than the maximum dosage.

One of the main reasons we have Dr. Gien as my doctor is because he really listens to Mommy and Daddy.  He isn't afraid to think outside the box and really has my comfort in mind.

I was having a bad case of the hiccups when Mommy got home.  She held me for a while hoping that would help make them go away but it just made it worse.  I got back into my boppy and it still took me a little while to calm down.

I am with my nurse Beth tonight so Mommy and Daddy can get some sleep.  

Mommy and Daddy talked to Dr. Gien yesterday and we decided on another drug to try since I've been having lots of trouble with my lower dose of hyocyamine.  The problem is this drug will not be available until Tuesday at the earliest, so we decided just to go ahead and keep giving me the higher dose of hyocyamine with caution.

I've been having a fever off and on the last few days so Mommy and Daddy think I'm probably getting sick which may also explain my increased secretions and seizure activity.  Here I am yesterday trying to relax after a nice steam bath with Mommy and my exercises.

This morning was very busy!  We took our Christmas card photos and I was a very good girl:-)  My brother was so cuddly and he held me for a few of the photos.  We had a tough time getting him to smile but eventually he cooperated.  Mommy will keep the photos a surprise before Christmas, but keep an eye on your mailbox in December!

My fever is back tonight and I'm not feeling that great.  I gave my nurse Heather a hard time on Friday so I was going to try and be a little easier on her tonight, but it isn't looking good right now.