Ephesians 3:20 "Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us"

Friday, August 01, 2008

Couple More Updates

Hello all. . .

Well here are some more updates on the little man:

We have continued to wean his immunosuppression drug and we will continue to do so as long as his skin and gut handle the decrease okay.

We have started the communication with early intervention (therapists) so hopefully we can start working with Caleb on feeding, speech, PT, OT, etc.

We are continuing to increase his g-tube feeds and decrease his IV nutrition. He is now up to 40 mls and hour on feeds! So exciting a little over an ounce.

He did get his tetanus shot so hopefully Dr. Markert will be contacting us soon to request his first functional blood work to be drawn. We are anxiously awaiting for that call.

Caleb is amazing me every day. His new thing is he loves yelling our dog Saba's name. I don't think Saba likes it as much though, poor thing. He also loves books. So amazing he will sit and act like he is reading for hours, really hours. He studies the books so closely. Yes he's a genius-okay I'm partial. HA HA

Okay, so I'm a little puzzled by the video camera. I am still trying to get videos from his second birthday. I am sure it is easy to do . . .I am working on it guys!! I did get another part for the camera, so we should be able to take tons of pictures of Mr. Photogenic. He will love that. I do have some older pics from May and June, so I included those below. There are a lot of close up shots in this group. We were trying to get a bunch of pictures at that time in regards to his cleft lip and nose repair healing status for his baby book. I will be adding more pictures once we get some new ones taken.

Well I continue to look for a job, if I had a nursing degree I could get paid for the care I am providing Caleb. Although I feel like I have a degree. Our nurse Amy, has said she is willing to work longer hours so I can go back to work. She is great - we will really have to work together to make a schedule work as she is still our only nurse. It is not like I really want to go back to work, as I am afraid how it will effect Caleb's development as we do a lot of therapy together every day and I do not want him to regress. I do not feel like it would be such a determent to his development in another six months or so, but we have a lot of bills to pay and the economy is not really helping Brian right now as he is a loan officer. I have looked at options of working from home, but they all seem like scams. I did find out today though if I get my first aid and CPR recertified I can get paid some money for the care that I provide Caleb that we are not getting through the nursing co. We are going to be looking into that - anything helps right?!?!?

Well all I am and so is Caleb very tired as we have a couple long weeks in a row. Take care everyone. Thanks for checking in. God bless you all!!

God Bless Caleb!!


Jenny said...

Sarah the video was amazing!!! It was a complete joy to watch! I loved when you were talking to him and he smiled! So precious! He looks GREAT! I hope things continue to improve!
Good luck w/everything....something will go your way I'm sure of it!!
Darin, Jenny and Keira

Lesley said...

Hi guys,
This is Lesley, one of the PICU nurses at Duke. I'm not sure if you guys remember me, but Caleb was my 1st assignment in the PICU. I ask Denise about his progress often and she showed me his blog site tonight. I teared up a bit to hear he's doing so well. He's the perfect example of why I do the job I do. He's cute as a button :) Hope you guys are doing well, too. Take Care!
Lesley Etheridge

Eva Nichole said...

What a sweetheart!! I loved the video and the pictures. I had tears in my eyes looking at his sweet face. I hope one day we get to meet you sweet Caleb!!
Crystal and Eva

PS Eva's blog is now set to private by invite only, I do not know if I sent you an invite or if I have your email address just send a request and I will let you in!!

Anonymous said...


Caleb looks amazing! I'm so glad he's doing so well. He is so lucky to have such great parents taking care of him. Wish you guys lived around here so we could come help out with the nursing situation. Say hi to your mom. Take care - I will keep checking in on you guys.

Sarah Sullivan
5100 RN

Chris B said...

Glad to hear more good news! What a precious little boy! Hope something reasonable turns up on the job side for you - seems like there should be something - just wish I had a good idea!!

Love to all of your family-

Anonymous said...

My name is Aubrey. I came across your son through a friend at church. I just wanted to say your sons smile put a warmth in my heart. It is awesome to see Gods wonderful creations in all the special packages. He has great parents and wonderful life to live next to you. Keep up the hard work, it is paying off. God bless you and your family.