Thursday, January 27, 2011

My daughter is a rockstar

Charlotte had her evaluation for Birth-3 today. She did a great job of showing off for the PT, EI teacher, and Program coordinator. They were very impressed with her rolling all over the room, and her desire to "push-off" and lunge forward when on her tummy. She also pivots really well; all of these things are great pre-crawling skills. She is getting stronger and close to sitting unassisted. The PT laughed as she observed that Charlotte's loooong torso is probably the only thing holding her back from sitting!

We also talked a bit about her eating. She is getting better, though still likes to spit and push food out with her tongue. They aren't too concerned though, and I really feel like she will get it with practice. We are going to keep an eye on it and call in an OT if we think she isn't improving.

The best part of the whole meeting was watching Charlotte charm her audience. She is so funny; smiles at everyone and was squealing and vocalizing at all the right times. After an hour of showing off, she was beat and ready for a late afternoon nap...something that doesn't happen very often!

We are continuing PT once a month, they didn't find a reason to increase it at this time as she seems to be right on track. The PT thinks she will most likely be sitting soon, and definitely crawling by a year, if not before.

Yes, Charlotte is a rockstar. 

Trying REALLY hard to sit!

Tuesday, January 25, 2011

Food for thought

Science has allowed us to, in the very near future, test prenatally for Down syndrome with a non-invasive blood test performed during the first trimester of pregnancy.

It is unforeseen what impact this test will have on the future of those with Down syndrome. One can only assume that this test will increase the already astounding termination rate (92%!) for babies diagnosed prenatally with Down syndrome.

Please take 5 minutes to read this article about the topic:
http://childrenshospitalblog.org/will-babies-with-down-syndrome-slowly-disappear/#disqus_thread

My favorite comment written by a reader:
People with Down syndrome are misunderstood. If you look at the facts that one in 733 live births a child with Ds is born. And 92% of mothers who get the diagnosis abort. They are supposed to be here, and they are not birth defects! 

We chose not to undergo any prenatal testing for Down syndrome. We did not have a prenatal diagnosis with Charlotte. It would not have made a difference, she is who she is, and we love her for that...




Bottom line? We need to educate doctors and future doctors so they are able to deliver accurate information to future parents of children with Down syndrome.

Saturday, January 22, 2011

Who needs a therapist...

When you have Katherine?!?

video

 Katherine is very excited to teach Charlotte sign language. She is learning a lot of sign at preschool and can't wait until Charlotte starts "talking" back! 

Friday, January 21, 2011

Therapy

Charlotte receives physical therapy once a month through Waukesha county's birth to three program. Her therapist comes for an hour and shows me what I need to do to help Charlotte progress towards the next milestone. I also have a book on gross motor development in children with Down syndrome that I can refer to.

Charlotte is doing well; still rolling like a crazy girl (I recently put away all her "playmats" since she never stays on them anyway) and is well on her way to sitting independently. In fact, just this morning she sat for about 10 seconds unassisted. My goal is to find that fine line between too much therapy and not enough. The therapy I do with her, I incorporate into play. Missy has told me more than once, that in her experience, therapy has to be fun for the child in order to be successful. A lot of times I don't even realize that we are doing "therapy" as it has become pretty natural.

I recently enlisted the help of my sister-in-law, Erin (she is a PT and FANTASTIC with children, we are lucky to have her!), to help me figure out some other ways to help Charlotte. There have been some interesting studies done on children with Down syndrome and the use of treadmills to help them learn to walk at an earlier age. The average age a child with Down syndrome walks is 24 months, and these studies have found that treadmill therapy can help them walk on average 6 months sooner. I could summarize what Erin wrote in my own words, but it is easier to cut and paste it:

The treadmill activates what's called the "central pattern generator" which is the instinctive pattern that is built into our spinal cord to make our legs move in an alternating pattern to walk. The quicker children are able to independently explore their environments the better all around for cognitive, language, motor, etc function. That sure is a cute treadmill they were using, but any would do, as long as you can hold her comfortably where you aren't hurting your back to do so. I've done this before in a child with CP who wasn't walking at the age of 4, but now is.

Here is the video so you can see exactly what we are talking about:
http://www.sciencedaily.com/videos/2009/0102-baby_treadmill.htm 

So now, the goal is to figure out how we can incorporate treadmill training into our crazy lives and make if fun for Charlotte. I hope she likes the treadmill more than I do!

Friday, January 14, 2011

Down syndrome awareness

I posted this link on my Facebook page, but I wanted to post it here as well, in case there are still some of you out there that don't frequent FB!!

This is a great blog, written by a mother of a child with Down syndrome who has recently taken on the endeavor of raising money to promote Down syndrome awareness. Check out her video she posted today; it really hit home with me, as I felt every emotion she described just 7 months ago when Charlotte was born. Kelle is also a fantastic photographer, and if you have a minute check out her daughter, Nella's, birth story.

http://www.kellehampton.com/

And if you feel so inclined...pay it forward to the "Oneder" fund....for Nella....for Charlotte...and for each one of the 400,000 individuals living with Down syndrome in the United States.

Sunday, January 9, 2011

Our crazy life

Mike and I graduated from college in 2002, started our new careers and got engaged in 2003, bought a house, a dog, and got married in 2004, had Katherine in 2005, bought a new home and dog in 2006, had Will in 2007, sat tight for a few years and then had Charlotte in 2010. 2010 was a crazy year for us, as you all know, and apparently we aren't interested in letting things settle down for a bit.

We want to move. Soon. We LOVE our location. Our neighbors are fantastic (mostly because they are more than neighbors, they are good friends), we love the proximity to all things important to us, we are even pretty happy with our house (though a 4th bedroom would really help my sleep right now; I am sure that will change as the kids get older). The main reason for wanting to relocate is school district. Charlotte has put a new dimension on what we feel is important in a district. Katherine starts kindergarten in the fall, and we would love to be in a new house so she will not have to change schools. We know that may not happen, and our ultimate goal is to move before Charlotte starts early childhood in 2.5 years.

We are shooting for putting our house on the market this spring, and crossing our fingers that it sells. We know we are dealing with a poor home market right now, and we are hoping this will work in our favor on the buying end, though it could make selling a little rough. Selling a house with 3 small children stresses the heck out of me, though what would our lives be if they weren't crazy and stressful!??!? 

Wish us luck. And send any potential home buyers our way ;-).

Monday, January 3, 2011

Blood Drive...PLEASE, PLEASE, PLEASE donate.

Just a reminder that this blood drive is Wednesday! Please consider making an appointment, or if you can't make it this Wednesday, please make an appointment at your local blood center and direct your donation to Zach and Sam's blood drive.

Do it to honor Zach and Sam.

Do it for Charlotte.

Do it for all those kids out there just like Zach, Sam, and Charlotte that need blood in order to live.

Please.

Zach and Sam's Community Blood Drive
Wednesday, January 5, 2011
2:30pm-7:30 pm
Ten Chimneys, Lunt Fontanne Program Center
S43W31575 Depot Road, Genesee Depot.

Please make your own appointment via the schedule line

Saturday, January 1, 2011

Hello 2011!!

Happy New Year!!

I am sorry I have taken a bit of a blogging break the past few weeks. Life has been busy, yet nice. Mike has been off since December 17th, and we have been visiting family, playing Santa, and enjoying the magic of the holidays through the eyes of our children. In between all of that we have taken time to catch up on some projects around the house (as I type this Mike is upstairs pretending to be a plumber and fix the tub in the kid's bathroom), and catching up with friends.

Christmas was wonderful. We spent the weekend of the 18th/19th in northern Illinois visiting Mike's extended family; Charlotte was able to meet a lot of relatives for the first time.





Christmas Eve was hosted by Kate and Bill, complete with a huge spread of Mexican food, Will's first snow mobile ride, and an outdoor margarita bar.





The kid's slept in on Christmas morning, and were delighted with all of the gifts Santa left for them. We spent a quiet morning at home playing with new toys and eating pancakes...just the five of us.






After a late breakfast we packed up the car and headed north for a few nights with Mike's family. The kids were super excited to spend a few days at Grandma and Grandpa's house; the 3 cats seemed to be the biggest hit of the weekend.






And finally, New Years Eve we spent at the Neuharths. It was super low-key. We brought Toppers pizza, Chris got a Culver's ice cream cake, and we spent a few hours chatting and watching New Year's festivities on TV while the kid's played. The highlight of the evening was the gingerbread train Missy and I constructed with the kids (I know, a bit late, however I got it for $2 on after Christmas clearance!). When all was said and done, it was probably the saddest Gingerbread train one has ever seen, and Alec promptly informed me, "Emmy, you are the craziest train builder!"






In closing, it has been a fantastically simple couple weeks. I know I should have some long, involved, soul-searching New Year's post. I should write about why I am grateful 2010 is behind us, and what we have to look forward to in 2011. I should list our resolutions and goals for the coming year. But frankly, I am going to enjoy just one more simple day. Because, during these past two weeks, I didn't think about the fact that my daughter has Down syndrome. I didn't think about all her upcoming doctor appointments. I didn't worry about the "what-if's" of the future. Instead, I enjoyed every second of Charlotte's first Christmas and the time spent with my children, husband, family, and close friends.

Happy New Year everyone, may 2011 bring happiness to all.