Happy 9 month birthday Lilly!!

Weight check = 9 lbs. 8 ozs.

Happy 9 months to Lilly! And happy 8 months to her little friend G.! You girls are beating the odds. Thank you God! :)

Saturday we had to go back to the hospital for Lilly to give more blood to re-do the electrolyte test. It took 3 people to get the blood they needed. Yesterday the doctor on call contacted us with the results. Lilly's potassium level was completely normal. Her sodium was slightly low. She wanted Lilly to take a salt supplement. There are no pharmacies in our town that carry what she needed. So I was very glad when her cardiologist said today that he didn't think she should take the salt supplement. He said it wouldn't hurt her to. But that it did counteract the Lasix. And that her levels are normal for someone on Lasix. So thanks, doc - that saved time in our day!

We were at the cardiologist today getting another echo done on Lilly to make sure there wasn't anything about her heart that would cause a problem in the upcoming g-tube surgery. Her cardiologist said the surgeon and anthesisologist were a bit nervous about Lilly because of her condition. But he feels confident that everything will go just fine.

As we again discussed her rejection for surgery because of her hypertrophy, he mentioned something I had not thought about. He said that a bigger pulmonary artery band could be put in, if they needed to still do a less invasive surgery at some point. But that Lilly's current band fit great and she may very well do fine with it for a couple years.

Today's echo showed that Lilly's heart function is excellent. The thickness of her heart increased by 1 mm. Dr. R had gone back and studied all her echos and said that the thickness of her heart had been there for quite awhile and was not caused by her last virus/hospitalization. So a mix of news. Dr. R was upbeat about Lilly though. He confessed that when he first met her he did not think she would live very long. But she's impressed him as a little fighter and is really beating the statistics. Our "expensive ministry" indeed!


Yesterday we went to visit Lilly's Pop in rehab. He is still recovering slowly from his stroke. He still does not speak, but can respond by nodding or shaking his head to yes or no questions. He does not walk either. He has therapy sessions each day and is really trying to do well. Sounds like Lilly got some of that fighting spirit from him! When we bring Lilly near him he reaches to touch her and looks at her so intently and smiles. I'm so glad God gave us the gift of smiles!

With all the suffering and trials in this life, I have no idea why we just keep begging God to keep our loved ones with us. With all Lilly's gone through - why don't I want her to be where there is no pain or tears? I'm selfish. Especially at times like this where she's laying in my lap and every time I look at her face she gives me a million dollar smile. What a gift she is!

"Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom there is no variation or shadow of turning." - James 1:17