Button buddies and pediatrician visit

Weight check = 12 lbs. 7 ozs.
Height check = 24.5 inches

Lilly had a check up with her pediatrician today. She's doing really well overall and everyone in the office was thrilled she made it to one year old. Her pediatrician requested a picture of Lilly to hang up in the office.

I've been thinking ahead to the dreaded winter months of super germs everywhere and anyone reading this blog for long knows how hard that can be on Lilly. (She was hospitalized twice this year for viruses, and almost died both times.)

So I asked about getting Lilly the RSV series of shots which starts around October and goes for several months. These shots are ridiculously priced - about $1000 PER shot! But if it really does protect her from the viruses, it is worth it. And it would save a ton of money from hospitalizations. (The two viruses she had been hospitalized for combined totalled @ $150,000.)

I also have found many parents of Trisomy 18 children have nebrulizers and use them for breathing treatments for their children when their kids get colds, or are really congested. They say if they use these, then they can often nip an illness in the bud. We want to do that too! So I am going to buy a nebrulizer and I got a perscription today for Xopenex to use with it..

Thanks to a tip from my cousin M., I got something that's working really well for Lilly called "button buddies." (Today's pictures) These little cloth circles go neatly around her g-tube (they velcro close) and work sooooo much better than gauze and tape. (Lilly often has a little stomach leakage so we need something to absorb it and keep it off her clothes.) They are soft and ticker than the gauze I used so I am hoping they'll cut down on her granulation too. (Growth of skin around the opening to the stomach.) Plus they're washable! So it will be a money saver, just like Lilly's cloth diapers. I got these from: http://www.mybuttonbuddies.com/

Speaking of g-tubes, ever since Lilly had her's placed in May, she has done a lot of spitting up. (Which she rarely did before.) She was spitting up several times a day and it was a lot. Plus her tummy seemed uncomfortable. We finally cut the rate back on her feeding pump and now she's not spitting up at all. (I was actually afraid to do this initially because it's she already gains weight so slowly. But I reasoned if she's keeping everything in - instead of spitting up a lot of milk - then that is better for weight gain.) I have been pondering why this was happening, since she handeled the higher feed rate with her NG tube without problems, when it finally hit me that the balloon at the end of the g-tube (which is inflated with water in her stomach to keep it from coming out) takes up a lot more room in her tiny tummy than the skinny NG tube did. Oh .... that makes sense ...

Lilly is in my lap and just happily finished off a spoonful of coconut oil. It gives us such joy to see her happy and feeling well. Her nurse today commented that Lilly is a lot closer to Jesus than we'll ever be. That's the truth!

"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord." - Romans 8:38-39