Hello to all of you out there in Internetville! We are still truckin' along doing pretty well. As I said before we love boring! Ava is napping so I thought I'd take a few minutes and update. I've been trying to increase her stomach tube rates but boy is her belly not liking it. We are stuck at 61ml's an hour. If I raise it she gets feeling nauseous. It is frustrating at times because we need her stomach to stretch but it seems it has a mind of it's own. I just want to do what is right for her.
Her sisters wanted me to set up studio and take their pictures with flowers like I did with Ava a few weeks ago. Well yesterday was the big day. I waited until Ava was napping and we shot some gorgeous pictures. Their ages (10 & 8) make it super easy to get fabulous pictures. So here are a few.
In this picture Emeline reminds me of my younger sister Mary. Wow do they look alike.
Miss Lexis was so pretty. Her eyes just sparkled.
This was one of my favorite ones of Lexis.
Then I promised the girls a collage. I did this for Ava already. It is hanging in our living room and I adore it. So I ordered theirs. Here is all three of them.
I am so excited my photography class is tomorrow night. I just have such a passion about bringing out each person's special traits. I wait until that moment happens then I capture it. It is finally nice to be thinking about something for me and me only. It has been so long. I love that even though Ava seems healthy to us she still is not a normal child. I remember the first time someone called her "special needs" I nearly cried. My child? I'm just happy that she is still here with us. God is good.
If I could ask you to say a prayer for a new friend of mine. Her unborn baby has trisomy and cdh. The doctors say they will not help this baby. They don't believe an operation will save her. They have told the mother to abort but she decided that wasn't an option. She is now weeks away from her due date and she is desperately trying to find a surgeon willing to operate on her daughter. My heart just breaks for her. Keep her in your prayers as her and her family are having a hard time accepting that there is nothing to be done. I know first hand that God heals and God does Miracles. We must have faith and trust that He is in control and we must let go of the wheel.
I am just awed by Ava almost daily. She is a little firecracker in an uncertain world. I am so happy to be able to Mother all three of my girls. They are all so special in their own ways. Each adding so much to our lives. I thank God for all three miracles!
Thanks again for being our prayer warriors. We know that God gives us exactly what we need each and every day.
~Terri
6 comments:
hey, what kind of trisomy does she have. Email me ASAP because I have a friend who has a Trisomy 13, and one that had a Trisomy 16 that passed away. Let me know because some trisomys are so rare that docs say they wont survive, and aren't willing to do surgeries. My friends may be able to help.
Yes, please let us know what kind of trisomy. My little boy has trisomy 21 and he also was born with CDH and a CHD! We have a wonderful surgical team who have saved his life more than once. They even told us after the last surgery that they had never seen a child with all these defects survive and do as well as he has. Mind you he has issues with his lungs and GI. He also uses a g tube, and he is delayed, but oh my he's a sharp one, and a blessing. If I can be of any help my email is stephsnfrd@gmail.com. Lacey knows us, she just made us a blankie.
Best wishes, and I love the pictures.
Yes please let us know, my son has trisomy 21 and was born with a CDH and a CHD!
We have a wonderful surgical team who admitted that they had never seen a child born with all these defects before but they saved his life, more than once. He still has issues, he needs supplemental g tube feeding and has some lung issues. He's a delicate one medically speaking, but he's alive and growing and a super sharp little man. He's three now. If I can be of any support please let me know, my email is stephsnfrd@gmail.com.
God Bless.
Those pics are lovely. Beautiful, beautiful, beautiful...
Ava is in my prayers. I've been checking your blog on and off. You have my admiration. I wish I could be as strong as you are. My blessing to your family!
The pictures are incredible. So talented. I will absolutely keep your friend in my heart and prayers.
Stephanie
Kamryn's Mommy
ADORABLE pictures!!!!!!!!!!!!!
I will be praying for your friend.
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