Bragging On My Girl!

I wanted to get this post up three weeks ago, but at this point, we're going with the better late than never theory...

Claire wants to show off her new skills!!



























Just before Claire's 8 month birthday she started sitting unsupported for short periods of time.  We were so excited when she could make it to 5 Mississippi before she toppled over.  Now, just three short weeks later, she can sit tall for minutes at a time.  Her balance and posture are improving every day.  She can also get her hands up to play, or check out her surroundings before....

....she starts to lean....





....and eventually goes over!





 

Prayers for Lois

I'd planned to write a fun post today, with lots of pictures, but instead am here asking for prayers for Lois. 

The hardest part of Claire's extra chromosome has been all of real and potential health issues.  Yes, OHS surgery was very, very hard to go through, but there was an end in sight.  There are always possible complications with any surgery, but I knew there would be a time when I would have a healthy little girl.  One who would only need annual follow up appointments.  And this knowledge helped get me through the hard months of anticipation and worry leading up to her surgery.

But, in our Ds community there is talk of another issue too much these days. Cancer.  It's a word that is scary no matter who you apply it to, but when someone mentions pediatric cancer, my heart just skips a beat.  In our community there are warriors like Zoey who are currently in remission, some like Ella who are going through chemo right now, and still others like Emily who may be just beginning this journey.  Typically, kids with Ds do very well combating leukemia, but, after just three weeks of being cancer free, Lois has relapsed.

So, for all of these warriors and the many, many more who are out there, I ask you to consider becoming part of the National Marrow Donor Program.  And I ask for your prayers.

It's a Plane!

A week ago Claire went on her first airplane ride.  I try to visit my aunt and uncle each summer, but with Claire's OHS in June, it didn't work out this summer.  So, when they decided to have an anniversary party last weekend, it was too good to pass up. 

Claire and I left the house bright and early and made the two hour drive to the airport.  She slept through the drive, and was ready for a bottle as soon as we got settled on the plane.  She napped for a short period, but spent most of the flight just playing.  I made sure to give her bottles as we took off and landed, and she did great.  As we waited for her stroller and car seat, we had many passengers on the plane remark on how good she was!

We had a great weekend visiting with family, even though the weekend weather was a little cool.  We didn't get quite as much time on the boat as I would have liked, but Claire wasn't a huge fan of the breeze on the lake and seemed to be fine with just one boat ride.  We hope to make it back out next summer, and hopefully she'll be ready for more time on the boat and some swimming!

On My Own

For the first time in nearly eight months, I am home today by myself.  Darren took Claire to the farm this morning for silage harvest, and they won't be home until some time tomorrow.  I couldn't go with them because I have to work tomorrow.  And while a little time to myself is going to be wonderful, it's also very strange.  The house is so quiet.  Even when Claire is sleeping it's not this quiet. And I already miss her.  I'm fine leaving her when I go to work because I have to work.  Both for financial reasons and for my mental health, but today seems different because I could be with her.  This will be the first night I've spent away from her since she got out of the NICU.  I know that she will have a great day with Grandma, and I will be fine on my own, but I feel guilty for being away from her.  Ah, the joys of parenting...

I'm so used to my days at home revolving around Claire.  The feedings, the naps, maybe a few errands, and of course, pumping.  And really, pumping is the only thing I have to do today.  There are plenty of things I should do, but instead, I think the things I want to do are going to win out.  At the very top of that list is a loooong nap, and then I'm going to happily plop my butt on the couch and not move until I've finished this...

Upper GI and Swallow Study

A week ago Friday we headed to Denver for another round of appointments for Clarie.  I had requested an upper GI and swallow study to (hopefully) rule out reflux and aspiration.  Claire has been arching her back near the end of her bottles, leading me to suspect reflux, and coughing and choking other times when she drinks, which was why I wanted the swallow study.  We had originally scheduled the appointments with the Children's hospital, but it was going to be over 3 MONTHS before they could see her.  So, we switched back to the hospital where she was born, where they recently opened a children's hospital too.

We arrived at radiology and started with the upper GI.  This test needs to be done on an empty stomach and the timing worked out perfect.  Claire napped the whole way to the hospital and was awake and looking for a bottle. I didn't know how she would do with the test (laying on a hard table, flat on your back drinking a bottle), but she did great.  They started by having her drink about an ounce.  The radiologist took pictures almost continuously as the barium made its way to her stomach.  Claire was then rolled onto her side, and we waited.  They needed her stomach to start emptying before they gave her any more.  It took about 10-15 minutes, and this was the only part of the test that she didn't like.  She was very unhappy about being held in place on her side instead of rolling all over.  To help pass the time we talked, and sang (badly), and even got the paci out, which she never takes.

Once her stomach started emptying they filled her belly up.  She drank about 5-6 oz of barium, which is about a typical bottle for her.  While she did great with the barium, she had it EVERYWHERE.  There was so much pooled under her neck that you could easily see her neck crease on the x-ray.  (You could see her teeth on the x-ray too.)  Before her belly was even full she started to reflux.  You could see the line of it travel up her throat, and she was arching like she does with her bottle.  So, while not the outcome I'd hoped for, it was what I expected.  We got her cleaned up and into a new gown for the swallow study.

The swallow study started with BM and a little barium added.  She took the bottle well, and it was after about 20 swallows that she aspirated.  It never even fazed her though, no coughing or choking at all.  We then thickened the milk and tried again.  This time she didn't cooperate.  She didn't drink much, so we switched to the purees.  Once again, she just took a little before refusing.  We couldn't get her to drink the un-thickened milk with the preemie nipple at all.  So, we know she's aspirating, but since we couldn't get her to drink much of the thickened milk, how much to thicken is a bit of a guessing game.  Right now, it's less than nectar thick, but she's still coughing a little on occasion.  We are using a powder thickener, and now that I know that the milk needs to be fairly warm, it's mixing in much better than the first time we tried it.  We go back in about a month to do a follow up study and make sure everything still looks good.