Friday, May 28, 2010

Milestone Update & 3 Month Pictures

This post is probably going to be terribly uninteresting to anybody but me, however, this blog has become Claire's baby book and I want to get some milestone info down before I forget it.

On Saturday, Claire started rolling from belly to back.  She rolled both directions, but only while she was up on her elbows.  She would then lean to the side and flop over.  It was really more of a momentum roll, than a roll powered by muscles, but I think she'll get the hang of a more purposeful roll soon. 

Wednesday night Claire graced me with her first giggle!  We were playing pat-a-cake with her feet and every time I would "throw it in the oven" she would laugh.  It is the absolute sweetest sound!

Last night Claire rolled from back to belly to the left.  She's been rolling to to her belly for about a month now, but it's always been to the right.  I think we've also turned a corner with tummy time.  She has learned how to get her elbows under herself without help, and now she actually seems to enjoy herself since she's not in a constant face plant into the floor.

And to help liven up this boring post, here are Claire's 3 month portraits.

Wednesday, May 26, 2010


When we were trying to have a baby it seemed like everywhere I went everyone else was already pregnant.  The same thing happens when you get a new car.  All of a sudden, everyone has one.  I have the same situation now, but instead of seeing pregnant people, it's words that I hear.  Words that never would have bothered me before, twist my heart.  And because the word retarded has such a different meaning for me now, I hear it everywhere.

I've tried to explain, and gently remind, when I hear the r-word pass by the lips of friends and family.  But, four months later I still hear it.  I hear it from friends, from family and from strangers.  And while I know that none of you have Claire in mind when you say it, I can't help but have my heart broken a little more each time it reaches my ears.

So, please know when I point it out, I'm speaking for my daughter, as she can't speak for herself right now.  I have to protect her, and if I can educate people now, hopefully there will be fewer people using the word when she is able to understand what it means.

Please join me in pledging to Spread the Word to End the Word, and please read this post as it does a wonderful job of saying everything I haven't.

While I'm talking about words, I'd also like to mention something else that bothers me, though not nearly as much as the r-word.  Claire is not a Downs baby.  She is a baby who happens to have Down syndrome, and while the difference may seem petty, it really does matter.  Saying someone is a Downs kid puts Down syndrome above all else, and defines that person by their disability.  Claire is who she is, she's not what she HAS.

Sorry for the soapbox post today, but this is something that is really important to me, and this was just one more way to make people aware of the words they are using.

Monday, May 24, 2010

Overwhelmed, Well Baby and Vision

This has been one of those weeks where I can't seem to get anything done.  I have so many things going at once (work, home, Claire) that I don't seem to be taking care of any of them well.  Claire's upcoming open heart surgery (OHS) doesn't help either.  I've been calling the hospital and the surgeon's office with tons of questions I as try to work out the logistics of being away from home for a couple of weeks.  The stress of the surgery itself isn't helping either.

Claire's 4 month well baby appointment today was great.  I just LOVE her doctor. He is close to our age with young kids of his own, and I love that he doesn't make me feel rushed at our appointments.  He is also open to learning more about the best way to treat anything that may come up with Claire, and even thanked me today for allowing him to take care of her!  I passed on the info for an online class on Down Syndrome: Healthcare Updates for the Primary Care Pediatrician and he was excited for the opportunity to learn more.

Claire's growth is wonderful.  She is 11 lb 8 oz and 23 inches.  She got one shot and one oral vaccine today and did worse with the oral med.  She was asleep when the nurse came in and startled her and it put her in a grouchy mood!

This afternoon Claire had a play based vision screening.  She really favors her right side, and we wanted to have her eyes checked out to see if that was the cause.  Her eyes show a nystagmus, which is a jerky movement in her eye when she focuses to the left, which is her weak side.  While it explains why she almost always looks to the right, we'll have to wait until after the OHS to have her eyes tested by a doctor.
I was hoping to have some pictures to add to this post, but I haven't cleaned my camera out in so long that my memory card is full.  It's just one more thing I haven't gotten to lately...

Thursday, May 13, 2010

Surgery Date Set

Last Wednesday we took Claire for her monthly cardiology check up.  They did an echo and a chest xray and found that her heart was a little enlarged and there was some extra pressure in her lungs.  Both of these are expected with her heart defect, but the Dr also said it was an indication that we need to get her surgery scheduled.  He presented her case to the surgeons Tuesday and yesterday they called with a surgery date. 

Pre-op is June 8 and surgery is on June 9.

I know that this surgery needs to happen and I know she will have more energy afterwards, but I just hate that she has to go through this.  She has been doing so great with her PT, and her head control gets better everyday.  It bums me out that we have to stop working on her tummy time for 6-8 weeks after the surgery.

At the same time, I'm glad just to get this over with.  The surgery has been hanging over us for about 6 months now, and I'm glad just to finally have a date. It's good to know that after June 9 we can focus on her recovery, and not have to worry quite as much about every little cold or cough.

Right now, I'm not too worried about the surgery.  I know that it will seem more real as the date gets closer, but first we have some fun family things coming up.  Jake (my brother) will be home from his Marine training at the end of the month.  He has a few days at home, and will be having his wedding, before he and his wife and kids pack up and move to San Diego.  I'm so excited to see him and am thrilled that Claire's surgery didn't conflict with the wedding.

Tuesday, May 11, 2010

Reflections for Mother's Day

I'm late getting a Mother's Day post up because our weekend was filled with cows, but I didn't want to have my first Mother's Day go by without an acknowledgement.

My first Mother's Day had me looking back about six months ago.  This was right around the time the doctors discovered Claire's heart defect. We had gone in for a routine growth ultrasound and were excited to see our baby again.  And then the tech stopped on her heart, and stayed there for what seemed like forever.  And I knew.  And at first I didn't ask, because maybe if she didn't say it, it wouldn't be true.

When the doctor finally came in I had to say it, and I remember very calmly asking if this was the defect that was commonly associated with Down syndrome. When he said it was, I was able to say ok, and sat silently through the rest of the appointment as they scheduled us to see the cardiologist the following week. I made it out of the clinic before completely breaking down. I stood in the parking lot with Darren for quite a while and sobbed. Not only were we now facing open heart surgery, we also now had DS to deal with.

We live 2 hours from our doctor, and all of our family knew we had an appt that day. The phone rang all the way home, and I couldn't take a single call because I couldn't stop crying. I would finally calm down a little, and then the reality of our situation would creep in and I would be crying all over again.

The next week was a haze filled with lots and lots of tears. I was trying to fill close friends in on the situation without crying uncontrollably. My baby shower was also scheduled for about a week after this appointment, and I almost cancelled it because I just wasn't excited for our baby then. Now, I'm very glad that I went ahead and had it, but I wish the timing had been a little different.

My first post on my blog was titled Scared. This was posted shortly before I was due, right after another massive crying spell. I told Darren that I would prefer to be pregnant forever just so we wouldn't have to deal with the unknowns of our baby's situation. These worries and fears made me feel terrible. I felt like I should be as accepting of the situation as he was, but I just couldn't do it.

Six months later I wonder what I was so worried about. I look at my crazy haired, blue eyed girl and all I see is Claire.  I don't see a diagnosis, I just see love.  There are things I wish were different.  I wish she didn't have to struggle for what comes easily to others.  I wish there weren't cruel people in the world who make fun of those who are different.  I wish her "disability" wasn't apparent on her face, as some people may place limitations on her.  But, I have slowly come to realize that even if I could take away the DS, I would change who she is, and my baby girl is perfectly and wonderously made just as she is!

Wednesday, May 5, 2010

Wordless Wednesday

I'm not really a Nuggets fan, but friends have mentioned that they think Claire shows a resemblance to Birdman.  We just need to get her a headband to make the look complete!

Tuesday, May 4, 2010

Claire's First Branding

During the spring and summer our weekends are often very busy, and usually filled with cattle.  Last weekend we branded the calves, and they will be moved to summer grass next week.  We've had a fair amount of rain lately and last weekend was forecast to be wet and cool too. Saturday was cool, but thankfully it was dry, as branding wet calves doesn't work well.

The corrals were a little sloppy, but the calves sorted well.

Waiting patiently to get started

Applying the brand

Next in line

We had Claire in her farm outfit for the occasion, but she didn't let all the commotion interrupt her nap.

Monday, May 3, 2010

Awesome PT appointment

When it come to Early Intervention and living in a small town, there are definite advantages (like being able to get into the program right away), and disadvantages (not having a PT locally available).  Since there isn't a PT in town, one comes up from Children's once a month, and the other 3 weeks a PT assistant travels our direction.  Claire has been seeing her OT since she's been about six weeks old. I really like her, but wanted to have the PT see her too as we are getting close to surgery.  Since her tummy time will be restricted for 6-8 weeks I wanted to make sure she has a solid foundation going in.

I really liked the PT.  She was friendly and knowledgeable.  I would describe my concerns, or areas we needed to work on, and she jumped right in with Claire, moving her around every which way.  I've been a little concerned that Claire has been favoring her right side. She really prefers to keep her head turned that way, and will look at nothing instead of turning to the left to look at us or her toys. I could tell the PT loved her job.  She would get so excited when we found an exercise that would work well for Claire. 

We have some great new ideas for working with Claire, and goals to try and reach before we see the PT next month.  I hope to get one more appointment in before the surgery.  The PT we saw today also works closely with Pat Winders, and will keep her updated on Claire's progress as we are set to meet with Pat in July.