Friday, April 30, 2010


Claire has been so close to rolling for a couple of weeks now, and two nights ago she rolled from back to belly, and than to her back again! She wouldn't repeat the roll for her dad then, but by today she's rolling from back to belly all the time. She's only working on rolling in one direction, so we're working on the other way now, and working on getting from belly to back. Once she makes it to her belly she gets mad.  It's so much fun to have her doing new things, but it also means she's getting so big!

Claire has been really talkative lately.  She's babbled and cooed to us for a while, but now she has started talking to her toys too.  The toys on her swing and car seat get quite an earful!  I love hearing all her noises.

Lots of people keep asking about surgery updates, and unfortunately I don't know anything more right now.  We were supposed to go to cardiology in 2 weeks, but I've bumped Claire's appointment up to next week, as her coloring hasn't been quite as good lately. Right now it looks it will be May to the beginning of June.  This is the same time frame as Jake's wedding, so we are trying to make both work.  Jake should get his orders soon, and depending on where he is stationed and his leave, and that will help with the timing of everything.

Thursday, April 29, 2010

Today somebody asked me...

if Claire has Down syndrome.  This is the first time that anyone has noticed that she has DS and commented on it. Maybe others have noticed and not said anything, but I'm glad this young man stopped and talked to us today.

The young man that asked was an employee of Walmart and I'd seen him there, smiled and said hello, but never talked to him.  I was walking along and could tell he wanted to look at her, so I stopped.  He came over and said how pretty she was, and remarked on her crazy hair.  He paused, and I was getting ready to move on when he asked if she has Down syndrome.  I smiled and said she did.  He smiled back and asked "will she be able..." and I have to admit, my defenses immediately went up.  Whatever it was, of course she was able! But I shouldn't have worried.  He wanted to know if she would be able to be a part of Special Olympics when she got older.  I assured him that if she was wanted to, she could. 

We talked a little more, and he wanted to know how we knew she had DS.  I explained about her heart, and that they did a blood test to tell us for sure after she was born.  At the end of the conversation, he said that sometimes people make fun of others who are different, and that's why he hoped Claire could be part of Special Olympics.  He said he wanted her to spend time with people like him (he doesn't have DS), and others that were her peers.  It was very easy to tell Special Olympics has a big impact on his life, and I would have liked to talk to him some more, but after that he made an abrupt departure.

I've been kind of excited for someone to notice that Claire has DS.  In a way, I want people to know, if only to help dispel the myths surrounding DS.  I want everyone to see her as a wonderful, beautiful, awesome child who just happens to have Down syndrome. And people asking about her DS is one more way for me to accomplish that.

Thursday, April 22, 2010

Need Toy Recommendations and Happy Things

I recently got Gross Motor Skills in Children With Down Syndrome and have started doing some of the exercises with Claire.  One of the things I've been working on with her is reaching.  She has no problem getting her hands off the floor and into her mouth when she wants to, but most of the time her arms are flopped out at her sides. 

I'm having a hard time finding a toy that motivates her to reach or to lift her head off the floor for very long.  Maybe she's not quite ready for it, but the toys I have don't seem to hold her attention very well.  She likes the lights and sounds on her activity gym, so I think something along those lines might be good.  She also loves soft things.  She always has her hands grabbing her clothes, burp rag or around my shirt.  I think these are easy for her to grab and hold onto, so maybe a soft small toy would be good.  If you have any recommendations for toys your kiddos enjoyed around 3-6 months of age I would love to hear about them.

Erin from Unforeseen Gifts was kind enough to bestow the Happy Award on me. 

Here are the rules for the award:

1. Copy and paste the award on your blog.
2. Name the person who gave the award to you and link to their blog (or hyperlink).
3. List 10 things that make you happy.
4. Pass the award on to other bloggers and visit their blogs to let them know.

My Happy Things:

1.  Sleeping in.  Granted, I don't get to do this anymore...but the thought of sleeping in someday still makes me happy.
2. Coconut shrimp from Red Lobster.  Yum!
3. Warm weather and sunshine.  I am so ready for summer.
4. A good book.  Preferably enjoyed in a hammock, in the sun.
5. A white chocolate mocha with caramel.
6. Traveling.  I love seeing new places, and would love to mark a few more locations off my "would like to visit" list.
7. A bargain.  I'm not much of a shopper, but I love getting a good deal on something I was going to buy anyways.
8. A massage and a pedicure.
9. My wonderful family and friends.  I am truly blessed to be surrounded by such loving people.
10.  And most importantly, Claire.  Her sweet smile brightens every one of my days.

Since I'm terribly behind on my blog reading (as usual), and not sure where this has been, I'm not going to pass it on.  But, if you haven't done your list of happy things yet, please join in.  It's a great way to get to know a little more about each other.

Wednesday, April 21, 2010

Wordless Wednesday

Smiles!  I was finally able to get a couple of pictures of her smiles as they are much more frequent and last longer.

Monday, April 19, 2010

Support Groups

This weekend was busy (as usual) with lots of traveling.  On the good side, I'm getting much better at getting Claire and I packed up and on the road.

Friday night I attended a DS parent support group.  There aren't any groups like this in my area, so the one I went to was a couple of hours away, near where I grew up.  I was really excited for this meeting.  I was looking forward to meeting other parents, and getting to hang out with some school age kids with DS.  Unfortunately, the meeting wasn't really what I'd hoped for. 

First, it was very loud and very hectic, and hard to have a conversation at all.  I understand that this is also a time for the kids to get together and play, but conversation was difficult at best.  I also really felt like an outsider.  The parents in this group have been together for quite a while.  Their kids attend pre-school and school together, and they have a lot of the same therapists.  I knew that this was going to be the case, but it seemed to create a bigger gap between us than I thought it would.  I was able to talk to one mom whose daughter had the same heart surgery as Claire, but I don't think I really learned anything that I didn't already know.  Overall, I'm glad I went, but I don't think I'll make the effort to get back again. 

Saturday, on the other hand, was a great day.  One of my college roommates was in town, and we were able to get together with a third roommate and hang out. (Hi guys!)  It was wonderful to have a chance to get caught up and see every body's kids.

Sunday was spent out at our pasture working on water line and a new stock tank.  I was a little nervous about how Claire would do, but she was a champ.  She napped a little more than usual, but I expected that since car time makes me tired too!

Friday, April 9, 2010


Claire was supposed to have her three month cardiology appointment yesterday, but it was cancelled due to a scheduling conflict.  The cardiologist is comfortable waiting until next month to see her, and I am still trying to decide if I am comfortable waiting that long.  She is doing very well, so I think it will be fine.  She's happy and eating well.  She's not struggling to breathe and is gaining weight, so I'm inclined to wait.  I think going to Denver with her by myself would be hard logistically with feedings and pumping, and I'd like to avoid it unless it's necessary.

We met with the nutritionist yesterday, and the OT today.  We checked Claire's weight and length and she is growing right along.  She is 10 lb, 4 oz and 22 inches, which is between the 50th and 75th percentiles on the girls with DS chart.  I'm thrilled with her weight gain (almost an ounce a day!) and that's one reason I think waiting to meet with cardio is ok. 

Her OT appt today was at her baby sitter's, and I think it was helpful for Sharon to see some of the things we do with Claire.  None of the "exercises" is all that different than you would do with a typical baby, but I think it's helpful just to have them demonstrated.

This weekend will be full of traveling to the grandparents, and I'm hoping I don't forget anything.  I'm also having Claire's three month pictures taken while I'm there, so new pictures next week!

Hope you all have a great weekend!

Tuesday, April 6, 2010

Getting Caught Up

Things have been busy and I haven't had much time to post.  I thought that working part time would give me enough time to stay caught up.  Caught up on laundry and dishes, caught up on blog posts...but that's not the case at all!  Where does all the time go?

Claire was baptised on Palm Sunday.  It was a great day with loads and family and friends and beautiful weather!  I'll do a separate post with pictures soon.

Easter weekend was nice, but not quite what we planned.  We had planned to go to Darren's parents for the weekend, but Darren had to work.  He didn't get home until about 8:30 on Friday night, and had injured his finger while at work (drill bits and fingers are not a good combination), so I sent him to the ER to get stitches.  He got home about midnight, and then left the house at 4am to be back at work Saturday morning.  Saturday was another long day with him home around 8pm.  He headed back to work Easter Sunday morning, but only had to work for about 2 hours.  While it was nice that he made it home for church with us, he spent as much time driving Sunday as he did working.

Easter Sunday was just the three of us.  We went to church in the morning, had a late lunch and then all went home to catch a nap and get caught up on sleep!  It was a quiet, relaxing day with beautiful weather.  We took Claire out into the yard and got a few pictures of her in her Easter dress.  Hope you all had a Happy Easter too!