Hello! Ava is resting right now so I thought I'd take the opportunity to do an update. As I said in the last update I've been trying to slowly up her g-tube feeds daily. We are kind of stuck at 60 ml's an hour during the day. If I go up she gets sick. I've backed off for a few days but will try again later. Her stomach can only hold a certain amount and any extras just get the boot! She's been throwing up a little more. It usually is twice a day with the total volume of about 40 ml's or so. She keeps me on my toes that is for sure.
Speaking of toes and feet. Yesterday I was cleaning out the pantry and Ava found these. I guess she wants to "walk in Mommy's shoes"!
Ava had her first speech visit of the year with Melissa. Ava took to her right away so I was very happy. She will come once a week. I wish she would come more often because Ava really needs help....but we will take what we can get!
Her weight is increasing. She is now 27 pounds. So that is great. She's still a little peanut. Some of you have noticed her hair....it is really starting to grow. I'm so happy about this. I did put piggie tails in it the other day but I don't think I took a picture. (Sorry.) My camera and me sometimes don't agree.I am going to try to get another one soon. My goal or dream is to someday have my own studio here in the house.
So we were anxiously waiting for her to have a bowel movement on Tuesday and finally after 4 long days she did it. Oh you don't know what that does to me.....my mind gets to thinking about another obstruction. (We know this is very possible with all the abdominal surgeries she has had...scar adhesions cause them quite often.) I'm trying to be positive. SO we do one heck of a happy dance when it finally comes!
Ava received her (Jaxson's) "Blankies for Babies" today. Check out this great organization. (http://jaxsonsblankiesforbabes.blogspot.com/) This is one of my friends I have met on this amazing journey. Her son Jaxson was born with Trisomy 21. He is one tough fighter. YOu can read his story at (http://jaxsonsblankiesforbabes.blogspot.com/) I want to thank her for giving this to Ava. She loves it. What a great thing to do for these precious children. Here are a few of the pictures I took of her and her new blankie! Thanks again Lacey.
I love this picture. She was just looking at Jaxson's picture. I said this is the little boy that wanted you to have this blanket.
The girls got a new "Campout" tent a few weeks ago and their cousins came over the other day so naturally it was camp time. NO that is not a real camp fire Ava has her hands in!
She also has been having a little bit of a runny nose the last few days. Today she sounds a little bit junkie and when she throws up it is really mucusy. Let's pray nothing comes out of this cold.....if that is what it turns into.
This was Miss Ava last night just as she was about to go to bed. It takes me a good half an hour or longer to get her feeds, TPN and medicines ready just so she can go to sleep. (Sigh and my favorite part of the day is laying my head down at night. Love that feeling!)
I can't forget to mention this BIG thing. Our favorite newpaper columnist, Shawna is coming by on Friday to do another article about Ava and CDH. I am so proud of a Ava and all she has accomplished. I want the whole world to be aware that Congenital Diaphragmatic Hernia will be forever in her life. Sad part is it kills so many babies each and every day. She fought it at birth and it will not be going away anytime soon. :(
Thanks again for dropping by....you know we appreciate your thoughts and prayers. Is Spring coming? I sure hope so!
One last thing.....Ava's room mate at CHOP just turned three last week. We want to wish him a great year. He was also born with CDH and was given a 10% chance of surviving. He and his parents Kelli and Mike are such an inspiration to us. "Happy 3rd Birthday Chad. You are such a miracle buddy!"