Tuesday, February 21, 2012

Taste Tests

I'm happy to announce that Lily is finally feeling better. It took over two weeks to get this way, but I can now say she is 100% better.

Today was such a great day because she was in a good mood and did well for her speech therapist, and Soleil was in a good mood, too, because she's feeling better as well.

Lily actually surprised me during her speech therapy. I have these mesh feeding bags. Basically, you lock food in them so babies can suck the juice out of the food that's in it without choking. I've been using one with Lily--putting apples, oranges, even popcorn in it. She's accepted all, but a little reluctantly at first, and then would only take a small portion of it in her mouth. I still think she got the flavor, though.

Today, however, I put strawberries from our CSA in the bag. Lily was still a little reluctant, at first, but once she got the taste in her mouth, she opened her mouth wide and chomped down on a much bigger portion of the bag! She sucked on it and swallowed, and only a few times did a little juice drip out of her mouth. The ST and her assistant had to pry Lily's mouth open to get the bag out! The ST called it wonderful progress. Way to go Lily!

Thursday, February 16, 2012

She Just Can't Seem to Shake It

Last night, I posted a picture on Facebook of a smiling Lily. I said how she was smiling and cooing and all over the place. This morning, we woke up to a runny nose, rattly breathing, and an unhappy Lily. We've been dealing with some type of sickness in her for over two weeks now. Twice, we thought it was better. That lasted for a day, then the sickness came again. As did the vomiting and the unhappiness and all the fun stuff that goes along with a cold.

Soleil is still cruising around with a runny nose and a cough and is very cuddly. It's sweet, but when you have another child who needs to be cuddled, much doesn't get done around here. Thankfully, Dave does not love me for my ability to clean house. He does love me for the mother than I am, and right now, that and nurse are about all I'm able to do.

Valentine's Day was very low key. We were going to go see a guy named Jay Clifford play downtown, but with the kids sick, we just couldn't do that to Autumn, so we stayed home and had homemade extreme fries instead. (Think french fries covered in chili, (no-heat) jalepenos, ranch dressing, onions, and cheese! A potential heartburn nightmare, but oh so delicious!) Dave got me blueberry bushes to plant in our backyard even after I asked him not to give me anything since I'd not been to the store to get him anything because of the girls being sick. (I know I could have made him something, but I was literally taking care of sick children all day long. Oh, but don't you worry, I have something really nice planned for our anniversary!)

I'm so ready for these colds to be gone. Last night we got to see Lily like she usually is, and it was so energizing. I was greatly in need of my happy Lily fix. I just hate seeing her this way and knowing that she's miserable. It's troubling, too, because I always worry what it's doing to her body--the increased apnea when she's sleeping, the heavy breathing and coughing, the high heartrate. These are things I don't take lightly, things that I take for granted in a healthy child's cold. I'm hoping that spring will be a little kinder to Lily. And I'm hoping that soon I'll be able to post a happy face that stays around for more than a day.

Tuesday, February 7, 2012

Our Little Trooper

I think I can finally exhale.  The past few days have been quite scary for us, but today, Lily has been her smiley, playful little self.  What a trooper!

When Dave took her to the emergency room, it was actually the second time in three days that she had been.  Both times, her breathing didn't sound good, her SATs were low, and she was hardly moving.  Plus, her eyes just looked. . .sick.  No, more like the I'm too tired to fight this battle sick.  I was scared and, literally, holding my breath.

But every time we had gone to the doctor or the ER, Lily's lungs sounded clear.  She even had a clear chest x-ray.  They would suction her out with their machine, and her SATs would go up.  After the first ER visit, we got Lily's pulmonologist to prescribe a steroid for her, and the next day, we got her pediatrician to prescribe an antibiotic.  Today, although still a little snotty, she's feeling so much better.  Either the meds worked or the virus ran its course.

We also got, today, a suctioning machine.  Hopefully, that will reduce ER visits when a bit of deep suctioning is all that's needed.  I'm telling you, we were pulse-ox watchers!  It was THAT bad!

Gabriel is now sick, and I'm hoping that whatever he has is what Lily had and not a different cold that we're going to have to fight all over again.  It's quite exhausting!

In other news. . .who has two thumbs and has another baby on the way?  This guy (see below. . .by the way, he's my husband).  :)  Crazy, huh?!

Sunday, February 5, 2012

Another ER Visit

Dave is on his way to the ER with Lily. Sats in the 70s/80s range. Heart rate has been higher than normal. She's had a cold, but a chest x-ray on Friday revealed nothing. She can't sleep for constant apnea and just looks sick in her eyes and in her coloring. Poor thing. Please pray that all goes well and that this is just a bad bug that takes a few days to get rid of.

Wednesday, February 1, 2012

Silent Conversation

A long (long) time ago, my best friend, Yvonne, and I were driving down the road, not saying anything to each other.  She looked over at me and said, "You know you're with your best friend when you can drive down the road, not saying anything, and feel completely comfortable in the silence."  She was so right.  In that silence, in that comfort, so much was said between us--these two best friends--that we didn't need words.

The same can be said between me and Lily.  Don't get me wrong, she's a very vocal little girl!  But there are times when we're just sitting together, in the silence, and I leave that moment feeling as if an entire conversation had just occurred.  Of course, I couldn't tell you anything that we talked about, but the moment itself is so refreshing and fulfilling.  Like a conversation with God.

Lily has that power.  The power to communicate without saying a word, without making a sound.  Her eyes express so much, but it's not just in her eyes.  It's in her being.  It's part of her gift.

It kills me to know that there are people out there who don't think our Trisomy 18 kids have much to offer.  I can't say I have refreshing, fulfilling conversations every time I have a conversation with a 'normal' person.  As a matter of fact, there are many conversations I leave unsatisfied.  So in that respect, Lily, with all of her disabilities, offers more.

***My little girl is sick.  She finally got her medication on Friday, but now we're dealing with a strong cough that's causing her to vomit.  And a fever.  She's sleeping right now, but she's having a lot of apnea spells.  Her poor little sinuses get so clogged!  Please pray for a quick recovery.***