Goals For Isaac

We just got Isaac's chair last night. Doesn't he look cozy?
I just love this picture of the kiddos. I was looking back at last year and all of the goals I had in mind for Isaac. One of them was to not be dependent on oxygen anymore or moving towards the goal of getting the trach removed. Neither one of them happened. I wanted him to become more mobile. Even though he is much stronger than last year, he still has very low muscle tone.

I guess you could say my outlook has changed since last year. I don't have control over it all. It took me a long time to realize that. It's been a rough couple of months and I have to say that just having him to hold....just having him here with us is more than I could ask for.

I have many goals for him for the upcoming year, but mostly I want him to be happy and to have the best quality of life we can possibly provide for him everyday. This year he may still be on oxygen, he may not walk, but one thing is for sure, he is a happy little guy because he is loved.

Mostly my goal is that I would never fail to rely on the man upstairs for strength in the upcoming year. He has never failed to provide that for us no matter how hard it gets.

Here is a prayer/poem I found last year that says it all.

Grant me the strength from day to day
To bear what burdens come my way.
Grant me throughout this bright New Year
More to endure and less to fear.
Help me live that I may be
From spite and petty malice free.

Let me not bitterly complain
When cherished hopes of mine prove vain,
Or spoil with deeds of hate and rage
Some fair tomorrow's spotless page.
Lord, as the days shall come and go
In courage let me stronger grow.

Lord, as the New Year dawns today
Help me to put my faults away.
Let me be big in little things;
Grant me the joy which friendship brings.
Keep me from selfishness and spite;
Let me be wise in what is right.

A happy New Year! Grant that I
May bring no tear to any eye.
When this New Year in time shall end
Let it be said I've played the friend,
Have lived and loved and labored here,
And made of it a happy year.
--Edgar A. Guest

Almost The New Year...Almost My Birthday!

So I'll be the big 34 on New Years Day. I had my first chance at fame at only 2 days old when my picture was featured in the newspaper. I was the first 1976 baby born in my town. My parents were showered with tons of diapers and gift certificates. One gift certificate was for 5 dollars in gas. LOL. I wonder how far 5 dollars in gas went in 1976?

Sam is taking me out to eat on Friday and then my family is coming over to celebrate on Saturday. For an early birthday present we bought a new bed and bedding, which was long overdue. Our backs were killing us in that old bed of ours.

Isaac is doing OK. He is still testing positive for c-diff, which was the infection he got in the hospital after being on IV antibiotics. I was surprised that he still had it after all this time. The doc said it will have to run it's course. In the meantime we are giving him probiotics to help.

Have a safe and happy New Year!!!

-Colleen

Our Christmas

We had a great Christmas, especially with the little man being HOME! The best Christmas present a Mom could ever ask for! We had a quiet evening on Christmas eve while my Mom made us a nice dinner. Autumn was a good girl and set the table. She wanted to make it fancy.....
And Isaac was on his best behavior playing with his toy and crinkly paper while I helped my Mom peel potatoes. Sam put brand new crinkly paper in his stocking. Hours of entertainment! Isaac got a few cause and effect toys and a new game for his vsmile. He's also is getting a big present in the mail soon....A childrite seat that will be good for his posture and trunk control.

Christmas day we went to a party for Sam's family and nurse Lynnie offered to watch the little man so that we could stay late. We had a great time and ate more delicious food. Autumn also had a fun with her cousin and friends. I hope everyone had a great Christmas remembering the birth of our Lord and Savior, the one who came to earth to bless us all!!

A Very Special Santa

I looked under the Christmas tree and what did I see? A very special Santa just for me!!
We are adjusting to Isaac's routine since he's been home. After a whole month, it takes awhile to get back into it, not to mention having people in the house again! Whew!

On Wednesday we went to the Pulmonologist and Isaac's carbon dioxide levels were really high due to his chronic lung disease. To help him with that the doctor suggested plugging him into the bi pap at night. So far I can tell his energy has gone way up! He was very sleepy and lethargic when we first brought him home.

Autumn has a funny song that she made up for her brother when he was 7 months old. It's called....

"Isaac The Red Foot Baby.""Isaac the red foot baby, had a very shiny foot.
And if you ever saw it, you would even say it glows.

All of the other babies, used to laugh and call him names.
They never let poor Isaac, join in any PICU games.

Then one foggy Christmas Eve, the doctor came to say,
Isaac with your foot so bright,
won't you guide my hospital tonight.

Then all the babies loved him, as they shouted out with glee.
Isaac the red foot baby, you'll go down in history!"

Have a Very Merry Christmas Everyone!!

-Colleen

Happy To Be Home

We finally got the little man home yesterday after an entire month in the hospital. Whoo hoo! Things have been a little crazy around here just getting him settled in and also getting the home nursing staff trained all at once on our new accessory (the bipap). Isaac decided that now that he has a new accessory in the home that he would be on his best behavior. Last night his oxygen saturation's were excellent and he didn't need it! Double whoo hoo!

He seems very happy to be home and the minute we played Baby Einstein on his big screen TV he smiled real big. Thanks again everyone for your thoughts and prayers. It looks like he will be home for Christmas after all! And just in time for snow!

Plans For Going Home!

We finally have plans......

Plans for going home on Monday! Isaac has been off of the vent for most of the daytime hours and just a little at night. That's what we were praying for! We just need to get set up for the home nursing staff and we are all set.

I can't wait until I can post a photo of him at home in front of the Christmas tree!

I love this photo of him last year.
Christmas 2008

A Good Day

Yes, we are still here! I'm still playing that song"I'll Be Home For Christmas." Even though we are still plugging away, Isaac looks really good today. Actually better than I've seen him all week. Those prayers must be working! One thing he does have going on is some fluid retention. I'm not sure what that's about, but he always seems to retain fluid in the hospital. They are giving him lasix (a diuretic) though.

The deciding factor for going home is how long it takes him to wean him off the vent during the awake hours. This process has been going on waaaay too long, but it's looking more promising now. The medical supply company is coming tomorrow to talk to me about home bi-pap for nights. They were suppose to go over that with me last week, but then he caught that infection.

His favorite home nurse and I went up to the hospital tonight and gave Isaac a spa day. She washed and styled his hair while I clipped his fingernails. Then he got a head to toe massage. He deserved it after being there so long!

Here's a cute picture that big sister made for him to look at in his hospital crib. My little artist.

Little Man

Little man is still plugging away in the PICU and hasn't been doing very well at all. Over the past 3 days he has had a high fever, tons of secretions, chronic diarrhea and needing bipap/vent 24/7. Along with already having a pneumonia, he developed a bad case of C-diff. Today his fever was down and his oxygen needs are down a little too, so that's good. I did get a little smile today when I sang him his favorite song"twinkle, twinkle little star" and he still wants to play his counting game, but he only had the energy to count to number 3. Poor guy!

It's hard seeing him look so lethargic. I miss having him at home when he's alert and happy and wanting to play with his toys. I just want to scoop him up and bring him home to his own environment, but I know he has to be there. So far there is no indication as to when he will come home. They have to hopefully wean off of the bipap support and decrease his oxygen.

Autumn has been missing her little brother lately since they don't allow siblings to visit right now due to cold and flu season. Poor girl! It's been over 2 weeks! I have a photo book that has her picture in it that I put in his hospital crib. When he was feeling better he would light up and wave at her picture when I said it was Autumn. Awww, sibling love. Thanks again for all of your thoughts and prayers during this hospital stay. Some have asked if there is anything they can do for us and at the moment having your support and prayers is more than we can ask for.