Saturday, January 30, 2010


Rani heard a Jeopardy question related to the following information the other night. This is what I found when I looked it up. . .

Because the Angels are incorporeal beings, though they nevertheless take on human form when appearing to mankind, it can be difficult to differentiate one from another in icons.

However, Gabriel is usually portrayed with certain distinguishing characteristics. He typically wears blue or white garments; he holds either a lily (representing the Theotokos), a trumpet, a shining lantern, a branch from Paradise presented to him by the Theotokos, or a spear in his right hand and often a mirror—made of jasper and with a Χ (the first letter of Christ (Χριστος) in Greek)—in his left hand.

He should not be confused with the Archangel Michael, who carries a sword, shield, date-tree branch, and in the other hand a spear, white banner (possibly with scarlet cross) and tends to wear red. Michael's specific mission is to suppress enemies of the true Church (hence the military theme), while Gabriel's is to announce mankind's salvation.

Taken from

Thursday, January 28, 2010

The Ugly Side

In the past week, I have seen three children with Trisomy 18 pass away. My heart goes out to the family's of Zoe, Lyla, and Sydney.

This is the ugly side of Trisomy 18.

Monday, January 25, 2010

Second Guessing

I second-guessed myself today. Yes, I took that road where I wondered if Dave and I have done right by Lily, if we've made the right choices, including that decision to let her live. My second-guessing had nothing to do with how difficult life has become for me. My second-guessing had everything to do with how difficult life has become for Lily.

Her CT scan was today. With the doctor's suggestion, we opted not to have Lily sedated for it. I guess that meant that she would have to be awake for the IVs, and awake she was. All four tries. It was heartbreaking, and as I tried to calm her cries and endured her begging eyes, I couldn't help but wonder what are we doing to this child? And I had to be the strong one and tell her it was ok and convince myself that it could be worse and continue to let them prod to find the vein that would allow the fluid into her little body. I had to remind myself that exercise hurts, but it's good for us and think of today in the same way. How many times did I say I'm sorry? I choked back tears a number of times. I finally had to tell the nurses that's enough for today. But when is it really going to be enough? How much are we going to put Lily through to find this or solve that?

I'm letting her rest now. I'll probably pay for it tonight. Oh, I will pay for it tonight. But she had a pretty traumatic day, so I'm letting her sleep the incident away. Hopefully, when she wakes up, she'll have forgotten that it all happened, and I'll get those smiles that light up the room and my heart.

On a happy note. . .Lily weighed 10' 12" on Wednesday! That means she's gained a whole pound in a month. The nephrologist appointment went well. The connection between the urethra and the bladder is good. He'll see her back in three months. Blood work did reveal that her calcium levels in her kidney is a little high, but the doctor thinks it's because of the Zantac. Also, her liver seems to be inflamed. I don't know yet what that exactly means, I was hoping to find out after today's scan, but it looks like we're going to have to wait for that.

Tuesday, January 19, 2010

Please vote

Please help the Trisomy 18 Foundation win the Chase Community Giving Challenge grant by placing your vote. They have a chance to win $1 million and are up against big names such as the American Cancer Society.

Trisomy18 Vote

Thursday, January 14, 2010

Such improvements!

Lily's pediatrician is thinking that we should do a CT scan on her gall bladder, but he realizes our hesitation because of sedation, so he's going to intervene and see if it can't be done without sedation. He says the cameras are so quick that if she's asleep, they should be able to get a shot of her and see. He's also recommending that Lily see a gastroenterologist. I think that's a good idea. I think Lily has something going on, maybe reacting to something I eat or not being able to digest what she's taking in. I don't know if this doctor will be able to tell us anything, but it doesn't hurt to see.

I think Lily is going through a growth spurt. She wakes at night to eat every two to two and a half hours. I'm getting hour and a half naps throughout the night. Last night, I went to bed at ten, woke up at 10:45. Lily ate, but stayed awake until 1:30. She woke up again at 4 but dawdled eating. I put her in bed at 4:15, but she woke up at 4:45 and stayed awake until 6 or 6:30. Then she woke up again at 7:30. I laid in bed and fed her and got about an hour's sleep before Gabriel woke up. Luckily, Rani came over and played with Gabriel, so a got a little nap today.

Then again, maybe all this fussiness is because she might be cutting a tooth. She sure does have her hand in her mouth a lot and chomping on it like it's going out of style. Plus, she's been running a low-grade fever. Little girl! She'll look cutely funny with a tooth sticking out of her mouth. Her head's so small, I just can't imagine it.

She's beginning to reach for our faces and for some of her toys. She'll accept a little cereal if, and only if, she's in the bathtub. Getting positive remarks from the PT and OT and SLP and EI. . .it's so good to see and hear. I need those positives. The SLP ordered a Haberman Feeder to see if that's a bottle Lily will take. She ordered the mini-nipple because Lily's mouth is so small. Hopefully, the order will be in before next week's therapy session.

Thank you so much for your continued thoughts and prayers. Goodnight.

Friday, January 8, 2010

The Kindness of Strangers

They keep coming, even after the holidays -- those anonymously addressed envelopes with cards expressing prayerful thoughts, and inside are usually gifts from the heart. Then there are those that are addressed, but I do not recognize the person who's addressed them. I like the mystery, but I cheat and look at the red post office stamp. At first, I thought they all came from the same person, but unless this person is an avid traveler, these gifts must be from different people, because they are coming from Augusta, California, Cincinnati, even someone who's been in my house (sneaky, sneaky).

And it's not just the cards we get in the mail. Every Thursday, even though we've protested, we receive a bag with three full meals inside (Thank you Deb and Chuck). My school collected money for us and delivered it to us just before the holidays. My mother is always willing to play with Gabriel for us, so we can relax a little bit. The list goes on, and we cannot begin to show our gratitude. People have poured their generosity over our family, and it has been very humbling. We can only pray that we can be a channel for this kindness to others.

So tonight I just wanted to stop and say a simple Thank you to those people we know and don't know who have been so generous to us. Your gifts have been very much appreciated and well-received. Just tonight, Dave and I were able to have a night out (with Lily and Gabriel, of course) when otherwise we would not have been able to. Or, we've been able to just eat without worrying about cooking or doing dishes. Or, we've bought gas or groceries, which freed up a portion of that line item in our budget. Or, we've bought something for Lily that wasn't budgeted otherwise (thank you, Catie). You have all been a God-send. We certainly do not deserve your generosity, but know that we appreciate it with all our heart.