Sunday, February 27, 2011

It isn't rare. It is all the time.

The other day, Missy said to me, she often wondered if people thought the videos and pictures posted on this blog were a rare moment in time captured by film, or if they knew that those moments happen all the time.


My two older children, especially Katherine,  love their sister.  Hugs and kisses for Charlotte happen multiple times a day in my house and I repeat the statement, "Give your sister some space!" at least twenty times each day. And while I am thrilled that there is so much love in my house, it is tiring as well. 



 Don't get me wrong, I wouldn't have it any other way, I just hope the love fest continues as Charlotte gets older and starts stealing their toys! 


Happy Sunday everyone, share the love today!

Tuesday, February 22, 2011

I wish I had known.

8.5 months ago, the day after Charlotte was born, I wish I would had known the immense joy and overwhelming excitement I feel every time my little girl learns something new.


It is truly an amazing feeling; one I have never experienced with either of my other children. I think it has to do with overcoming odds, and knowing how hard my little girl has to work to achieve each milestone. As a result of Charlotte's bonus chromosome she has low tone; meaning she has to work extra hard to strengthen her muscles in order to hold her head up, sit, crawl, walk, and every other skill that comes easily to many of her typical peers.

Luckily, therapy around our house is just glorified play time. We put on Charlotte's little pink hot pants (a.k.a. "hip helpers") and hang out on the floor for awhile. Thankfully, I have lots of help.





Yes, if only I had know about those feelings, maybe the first few days after Charlotte's birth wouldn't have been quite so hard. Hindsight is 20/20.

Sunday, February 20, 2011

A little bit of this, a little bit of that...

1) We have spent the past few weeks getting our house ready to put it on the market. Whose bright idea was it to try and sell our house with three young children underfoot? Yikes, we are in for a wild ride the next few months. Luckily, we have had lots of help from family and friends; not only with watching the kids, but also their expertise and willingness to put in a little elbow grease to get everything ready. Thank you! Our next step is actually listing the house, and praying that it sells quickly. I don't know how long I can keep the house clean for showings without losing my mind!

2) Charlotte is doing really well. We had her Development Follow-up appointment last week at the heart center (we will go every 6 months until she is 3 years-old). All three therapists (PT, OT, SLP) were thrilled with her progress, as was the pediatrician. They did give us some things to work on, though so far, Charlotte has been making it pretty easy on us. She is a very motivated kid, who wants to learn and MOVE, but yet laid back and easy to work with--making therapy easy. We are thankful for that.  Her newest tricks? Laughing and squealing...a lot, and especially at her siblings. It is adorable the "conversations" she has with Katherine. Charlotte has also learned how to get up on all fours and rock back and forth. She thinks it is hilarious and is so proud every time she does this. The other night she woke up in the middle of the night, and when I went to get her she was up on all fours, rocking, with her eyes closed.

3) We scheduled Charlotte's finger separation surgery. It will be Monday, March 28th. I am pretty nervous about the thought of another impending surgery, though compared to open heart surgery this should be cake. However, it is never fun to hand over your baby for surgery, no matter how small. Thoughts and prayers please. 

4) I leave you with this...I love these girls!

video

Tuesday, February 15, 2011

Did you know?

Did you know that it is "Down syndrome" not "Down's syndrome?" It is a pretty common mistake, one I too made shortly after Charlotte was born. I think my first google search that Thursday night we got home from the hospital was for "Down's syndrome." However, I quickly learned that Down syndrome was named after the man who discovered it, John Langdon Down in 1866. Because the syndrome was named after him, and doesn't belong to him the possessive " 's " is not needed and not grammatically correct. It is also proper grammar to capatalize the "D" in Down, because it is a name, and not the "s" in syndrome.

Since learning this, it is amazing to me how many medical forms are incorrect. Just last week I was filling out a health history at the dentist for Katherine, and even though for her I don't check the box for Down syndrome, I still made a point to cross off the incorrect " 's."

This is also why it is incorrect to say that someone has Down's. Instead, simply say they have Down syndrome, or if you really must shorten it, you can say they have Down.

Monday, February 14, 2011

Love.

I have started this post about six times, only to hit the delete key. I am not sure what I really want to say or how to put into words what comes to mind when I think about "love." Today, on Valentine's Day, I think it may be easier to show you. Four days of my life stand out when I think of love...four, very love-filled days.


July 31, 2004
 


October 13, 2005
     


September 12, 2007




June 9th, 2010


*I am pretty sure this picture is from June 10th, but we'll have to pretend. We have very few pics from immediately after Charlotte's birth due to the fact that she was born so incredibly quickly and no one was prepared....pictures were, unfortunately, an afterthought!


Happy Valentine's Day everyone. Surround yourself with those you LOVE!




Sunday, February 13, 2011

Speechless

I took Katherine and Will to swimming lessons yesterday. The lessons are held at the local YMCA, and there is a viewing room for parents. There are quite a few different lessons going on at the same time, as Saturday mornings are pretty busy. I was particularly intrigued by a young girl and her instructor working right next to Will's group. The young girl was probably about nine or so, and had Down syndrome. Quickly I realized her parents were sitting right next to me in the viewing room.

I have been in this situation before. I really wanted to say something to her parents; to strike up a conversation. I just don't know how. I didn't have Charlotte with me, and I always worry about offending someone. I consider myself a pretty outgoing person, except in situations like these. So instead, I quietly sat and watched this little girl for the remainder of the lesson. And like most times when I see individuals with Down syndrome in different situations, I was very encouraged and impressed. This little girl seemed like any other kid in that pool; doing exactly the same things and loving every second of it.

I would love to meet more parents of children with Down syndrome, and talk about their experiences. I am lucky to have internet resources such as message boards, blogs, and a local list serve to keep me connected at home. I am sure in the months and years to come, I will meet many families, I just need to figure out how to start that conversation!

Thursday, February 10, 2011

Another surgery...

Charlotte had a consult with the plastic surgeon today. It was the first time we have been back to Children's Hospital since her last cardiologist appointment, a week after surgery. I have been dreading going back. The last few months have been blissfully simple. No doctors, no health issues, no worries. This appointment was the first of three appointments we have at Children's in the next three weeks; next week we have a Developmental Follow-up appointment through the Herma Heart Center, and the following week we go to the ENT for a hearing test (though with the way she jumps when her siblings scream or turns her head when we say her name, I am thinking she can hear fine, though what do I know?).

The consult went well today. The surgeon agreed with me that we would only be doing her fingers, as the syntactically on her two toes is so minor we would be doing it only for cosmetic reasons. If we did do her toes, it would add two more hours that she would be under anesthesia and of course another limb that would be casted and out of commission for a few weeks. Her fingers, however, are webbed almost to the top and could eventually effect her gross motor development, as well as her ability to do things like become a famous pianist.

They will call sometime next week to schedule the surgery. She will have to spend the night in the hospital due to her previous cardiac surgery, which I am not excited about, though they will be able to use better narcotics to manage her pain and it gives me an excuse to buy some new spring babylegs. Charlotte will also get to sport a cast for 2 weeks and I am sure Katherine and Will will help to make sure it is well decorated.

Our appointment this morning screwed up her nap schedule, so now she is super over-tired, still getting over a cold, and refusing to sleep. The crazy thing though? As I type this, she is still as happy as can be.

Thursday, February 3, 2011

I can't, but maybe you can?

I can't donate blood again until March, due to required wait times between donations. However, I read in the paper today that there is a huge shortage of blood in the area due to the blizzard on Wednesday. All regular appointments were canceled as well as many blood drives. As of right now the blood center only has a day supply of blood on hand.

They are holding an emergency blood drive tomorrow and are especially look for type O negative donors (the universal donor). The blood drive is from 10AM-4PM at State Fair Park; or you can go to your local Blood Center.


http://www.jsonline.com/news/wisconsin/115235329.html

Anyone feel like saving a few lives tomorrow?!

Wednesday, February 2, 2011

Blister!!

Will looked out the window this morning and said "Look at the blister outside!"

It was quite the blister (blizzard)...I think we ended up with 15-ish inches or so. What did we do while snowed it?!?

Finger painted

Water colors

Mike's make-shift home office (we need a bigger house!)

Charlotte watching all the action

Does she not look 15 in this picture?

We also baked cookies...

and watched movies!
Yum!

And played in the huge snow drifts!

The kids sank in the drifts.

See the black speck in front of Mike? That's Sophie.

There she is! She had a blast in the snow.

Chillin' inside where it was warm.

Enjoying hot chocolate.

Warming up. 
All in all we had a really good day! Everyone needs a snow day every now and then :-).

Wordless Wednesday

Tuesday, February 1, 2011

You would think I was a first time mom...

Charlotte has a stuffy nose. She has also been a lousy sleeper for the past week or so. I know she isn't teething and she is still her happy self. She is nursing great and loving her fruits and veggies more each day. All signs point to a simple cold right? I know that, however I can't shake all the things I read, "babies with Down syndrome are prone to respiratory problems" or "babies with Down syndrome have small ear canals and are more likely to have reoccurring ear infections." So, off to the doctor she goes. Mike beat the blizzard tonight and took her in just before the office closed. Ears look great, lungs are clear. My baby just doesn't like to sleep anymore....just like her big sister and brother at that age.

One of the my biggest challenges lately is deciding what is "typical" and what isn't. I am having a hard time accepting, that thus far, Charlotte has been healthy. Besides a little sniffle, we have yet to deal with any other illness. I keep waiting for something to come up. I know I need to relax, and trust my "mom" instincts that worked so well with my older two. Unfortunately, I am having a hard time doing that. I guess, a few extra trips to the pediatrician isn't the end of the world, in exchange for some peace of mind. I also realize that I should be knocking on wood as I write this post...
After her bath tonight...she sure doesn't look sick, does she?


To everyone under a blizzard warning tonight--stay safe. No school tomorrow for the Katherine and Will; we have a day of play dough, painting, and cookie baking planned. Will was thrilled when I told him he could keep his monster jammies on all day. Mike is working from home, using his breaks to clear the driveway!