GI test

Well here is us going down to the test. Miss Ava rode in style.








So here is the latest thing. The GI test did not work because her stomach has not been used in over a month. She threw it right back up within about 5 minutes of putting it down there. Then they did the second attempt but that didn't work either. She kept it down long enough to find that her stomach is emptying, very unusually slow. So we stopped the test, due to fear of her aspirating. She is such a good little girl. She did so well this morning so I felt horrible that she had to throw up. So now I'm not sure what is next. The surgeons have to decide what to do.

I am very frustrated but I am very happy that she is at least acting herself. Praise God that nothing worse is happening. There was a family here that lost their son this morning. I just can't even begin to imagine their loss.

Thanks for your prayers. Someday we will go home....someday.....We just have to know more about what is going on in that body of hers.

~Terri

"And what did you do this morning?

Here was Ava's jam packed morning all wrapped up in a video. She is so much like herself it is just a miracle.

Photo and video editing at www.OneTrueMedia.com

~Terri

Smiles!

Here is a video I threw together early this morning. I didn't sleep well at all last night so I got up very early and let Brian get some much needed rest. She finally laughed ad smiled at Brian and I last night. It was so cute. I captured a bit of it in this precious video. We thank God for her healing and that slowly, day by day, she is getting stronger and her body is healing. As you can see at the end of the video she started hurting again. She threw up last night so her tummy was bothering her. We were just thrilled that she did smile and laugh for us!

Make an on-line slide show at www.OneTrueMedia.com

We took her on another "race car" ride last night, when she started feeling better, with our nurse Marta. We love her because she talks to Ava and asks her questions. Ava is so sweet she answers her by shaking her head yes or no. I really think she understands everything Marta says. Marta is always concerned about Ava's pain levels. We love that about her! "Thanks nurse Marta!"




So we took her off the nasal cannula yesterday but her heart rate keeps creeping up. We now have O2 laying beside her blowing in her face. She doesn't like it but we ask her if she wants the nose thing back in and she shakes her head no. We will see how it goes today. I just don't like her heart rate in the 150's when she is resting.

I'm not sure when the swallow study test is today. We are praying it goes well. Can you imagine trying to keep food away from a two year old? I can't! Thanks for your support and prayers. The sun is shining in the window here and it is going to be a gorgeous day!

~Terri

Off the Oxygen!

Miss Thing is doing so well. They decided to take her off the Oxygen this morning. She was statting pretty well for the past two days but decided to keep it in because of the humidity in the nasal canula. I was so happy. Believe me she was happier than me! She still has her ng tube in but we plan to get rid of that after her swallow study test tomorrow. Please pray they find no blockage and she can start the process of trying to eat!

We sat her up in bed this morning and she played with her wooden alphabet blocks that I brought from home. She stacked them as high as she could and then would push them all down. She was knocking them on the floor she was hitting them so hard!





Here is a some pictures this morning of her head and her right arm. They are healing well. Her hair is already starting to peek out and it is very blond.





We are looking forward to another car ride later this afternoon!

Best day so far!

We had a really good day today. Lexis and Emeline got to come visit us. They even made Ava smile and LAUGH! It was so neat to see her sister bond once again. Ava's eyes still look sick but I can see some healing as well. She nods yes and no to the questions we ask. Dr. Kamath came in today and told us how good she looks. He is pleased with her progress. It has been a long haul and we are still not through it but we do see the rainbow.

Now Miss Ava had two race car rides today. The PICU has a special car to get kids out
and excited about leaving their beds. Our wonderful nurse Erin knew exactly what to do to make it a success. The first time we put her in the car she looked at us like, "Are you both nuts, I don't think so..." But the more we moved the more relaxed she got. Then we asked her towards evening if she wanted to go for a car ride again and she nodded YES! So this time the ride lasted a good half and hour. We brought her back to the room and asked her if she was all done riding in the car and she shook her head NO! It was so cute. Erin thanks for making us laugh so hard tonight. You don't know how long it has been since we have really laughed. It felt good. I will never forget running over your ankle with the IV pole caused enough pain for your eyes to cross!!

Ava feels safe in her bed. This is very typical. We have to get her up and moving again. The plan is to get a GI swallow study test on Monday. Then we will get a better picture of what is still going on inside her intestines. We will get an answer if feeding her will be an option. It makes me very tense. I just can't believe we are dealing with all of this. I wake in the morning to beeps and dings and I think to myself. "This is life at the moment. Oh how I miss my bed."

So here are some pictures of our blessed day!


I know sweet heart you are not too thrilled!

"What are you doing to me, Erin?" ~Ava says.

"These are my friends Erin and Kim everyone!"

Emme makes her laugh. What music to our ears.!
There is that smile we have been wanting to capture! I told you it was in there somewhere!

Here is the second car ride! I think she likes it!
Oops one of the lines got run over! Hold tight Ava.

Well we are so proud of all three girls. They are trying to adjust to a very hard life-style. It isn't an easy road but we will get there one day. Thanks for all your prayers. We surely need them ALL! God Bless you all and good night.

~The Helmicks