Whirling Dervish

Only way to suction out her nose is to keep her arms down! Doesn't she look pitiful?


Working on learning to crawl.


Motivated to get a toy.


Rubber Ducky, you're the one, you make bathtime lots of fun!


Amelia loves to splash and play with her floating toys.

On Tuesday, Amelia had a follow up echocardiogram. She was sedated for the procedure. Ha! The sedative made her more wild and crazy. She was flailing around so much she managed to kick me right in the mouth. She took about an hour to settle down and she finally closed her eyes. As soon as the nurse and technician came in to start and they put the wand on her chest her eyes popped open and she was trying to pull the lady's hand off of her, sqwaking, wriggling, shaking her head, kicking her legs, etc. She was acting like a bug on a hot sidewalk.

We have weaned her off her sildenafil (pulmonary hypertension drug) and they wanted to make sure her pressures are good without it. We haven't heard from the doctor, so I am assuming this is good news. She is down to 1/8 liter both day and night for a couple weeks now. We can use our smallest tank that is smaller than some women's purses --- and it lasts for 6 hours!

Amelia gets very fidgety in the wee hours of the morning and her cannula is falling out constantly. Neither of these things wakes her up, but it sets off her alarm, which wakes us up. I have been feeling like a zombie this past week. We have started swaddling her so she isn't flailing around and I have started taping the cannula on the end of her nose. Also she does not want to sleep in her own bed. Naps are in our bed now. And instead of playing nicely in the morning in her bed until we get her out, she has begun to cry as soon as she opens her eyes. We put her in the bed with us and she plays for a little bit until I am ready to get up and moving. She cries for attention, gets upset when we leave the room, and must have your full attention at all times. What a little diva!

In PT we have been working on crawling and crusing when standing. She can't seem to get herself into a crawling position and she when she gets there she wants to lay on her tummy and push up with her arms. Despite this, she pretty much gets where she wants by doing a combo of rolling and pivoting around on her tummy or bottom. She doesn't reall get cruising yet either. She is willing to lean and reach very far to avoid actually having to step. I have been practicing having her stand up in front of the couch to play with toys and then I move them to the far end to get her motivated to move along the couch. I also have been practicing her sitting on the stool and pulling to a stand.

We haven't been doing as well on the eating front. We really can't get to the next level until she is cleared by the pulmonologist to drink liquids or eat substantial amounts of food. The thing about getting a g-tube is that no one ever gives you a clear idea of how you are supposed to wean a child off of it. There is a technique that I would like to try once Amelia is taken off of oxygen. I have discovered the blog of a woman that described in very minute detail the technique she used. She kept logs of how much food she gave the child, what types, the kid's liquids, his weight, etc. It is very specific. She was able to get her child who was scared to eat food and was 100% g-tube fed, off of the g-tube in 10 days! But to do this while Amelia is still on oxygen would be harmful, so I am waiting as patiently as I can.

The weather here was freezing and then the last couple days it has been fabulous. Yesterday I took Amelia out in the stroller and had Asta off leash behind our house along the tree line of the woods and along the bayou. Hopefully there will be more sunny days to come. She really enjoys her walkabouts. They are good for her, Asta, and me!

The last couple days Todd's family has been in town to visit with their grandmother GG who has not been doing very well the last few days. Amelia had never met her before, but now has spent a couple days getting to meet her and hang out with everyone. We gathered around GG's bed in her room and Amelia even sat in the bed with her. GG smiled at her and kept looking and talking to her. I think they really enjoyed meeting each other. Her spirits really seemed to be lifted by having all her loved ones around. Please keep GG and all the family in your prayers.