Blog Slacker

So, as you probably can tell, I haven't written anything on here in months.  I guess I just feel our daily routine of things is not so blog-worthy.  Somebody, who shall remain nameless(mom) has been pestering me to post on here.

So, what have we been up to since February.  Well, for starters, Kylee turned 2 in June and she has definitely started to act like a 2 yr old.  She will get mad at you if she doesn't get her own way.  But, overall she is very happy most of the time.  She has mad some progression in all areas.  She has been walking for months now- I think since February and is getting pretty fast at it.  She can climb up on the furniture and just the other day, the little stinker was up on the coffee table when I came out of the bathroom!  She is getting better at steps, but since all we have are the steps on the porch, she doesn't get much time to practice.  In the speech department, she is starting to make lots of sounds and say/sign words.  She was signing quite a bit months ago, but stopped for awhile.  Her favorite word lately, is hi.  Every one we see, she has to say hi to.  It is really cute.  She can say bye, bath, pee(she won't pee on the potty, but she will sit on it,) Kate, mama(although she prefers to say Daddy,) pop(she does this when popping bubbles,) juice(although every food item is juice,) she will sign more and she definitely imitates lots of sounds lately.  She will start occupational therapy again and we will work on some fine motor skills.  Things such as coloring, proper use of utensils, etc.
In the health department, knock on wood, she is doing fantastic.  She just had a visit with the eye doctor and we were told that most eye issues normally seen in children with Down syndrome would likely have happened already.  So, we don't need to visit her for another 18 months.  We have her one year checkup with the cardiologist on Monday and then a followup with the neurologist on Tuesday. I'm expecting good news from both and with the neurologist, she really hasn't been showing any issues of her left leg bothering her.   She is slowly growing and weighs 25 lbs, but I couldn't tell you how tall she is.
On to Miss Kate or should I say Miss toothless.  She has lost 4 teeth in the last month, 3 of those were in 4 days.  She has gotten brave about pulling them out.  She has been working on her Christmas list for a couple weeks now and she has about 3 pages.  She is however talking about all the presents she is going to make for Kylee and our dog, Lacy.  She loves Lacy and all animals and in fact today, she said, "I can't wait until I am a dog!"  She is always amazing me with her wealth of knowledge.  She has been naming states and knows where they are and can even list in order the states to get to NY.
Last year, we had a photo shoot for this great organization that offers free photo services to children with major illnesses or disabilities.  www.inspirationthroughart.org  Anyways, we had an amazing photographer, Melody through Snooky Smiles and she graciously offered her services on her own a couple of months ago.  We had an amazing photo shoot consisting of Kylee and her 5 friends(all with Down syndrome) and their siblings.  The children were so well behaved and Melody captured such great photos.  Anyways, I will leave you with the slideshow that she put together of the kiddos and a few other pics as well.

Kate right after her last tooth fell out and her new haircut

This is what happens to Lacy when Kate decides she would be a good ballerina!

Peter

Isn't he adorable?  This sweet boy is in an orphanage in Eastern Europe and he desperately needs your help.
Here is the message copied from an amazing mama of 3 boys(one of the boys is a twin and he sports the extra 21st chromosome) and a big advocate for those with Down Syndrome.... http://taylorvillethree21.blogspot.com/2011/02/urgent-update-on-peter.html
OK EVERYONE!!! The gorgeous little boy is named Peter, his forever family is in the beginning stages of bringing him home. HOWEVER, we now have word that Peter has had surgery and "is not doing well". Not doing well means Peter's life is LITERALLY AT STAKE.

Peter's forever family literally does NOT have the luxury of time to raise funds for him. Patti is doing that RIGHT NOW. As we speak his life hangs in the balance and YOU can make all the difference in the world. DONATE, DONATE ANYTHING YOU CAN. His family wants him home NOW, but they need YOUR help....please don't delay.

PRAY AS HARD AS YOU CAN. SHARE WITH EVERYONE YOU KNOW. PRAY GOD CONTROLS HIS PULMONARY HYPERTENSION (I believe that is the main issue because the RR site says he has a high degree of pulmonary hypertension) THIS FAMILY NEEDS TO GET HIM HOME AND LET THE DOCTORS HERE TREAT HIM. NOW.

There is $11,381.50 in his fund right now. We have until FRIDAY FEBRUARY 11th, 2010 at midnight to save him. Patti is graciously extending his fundraiser by one day. "One day? Just one day?", you may ask. Well this is what I have to say to that question, "THAT ONE day could literally be the day that saves Peter's life."

PURE LOVE GIVEAWAY <-----click that link and it will take you to the page to donate, just let the sidebar load and you can donate via Paypal right there. OR Mail a check out ASAP to Reece's Rainbow

P.O. Box 4024

Gaithersburg, MD 20885

Auditioning for Blue Man Group

Happy 6th Birthday Kate!

It is hard to believe how fast the years have gone by.  Kate has turned into such a beautiful little girl.  I say little because even though she has gotten so big and she insists that she is not little anymore, she still is my little girl.  I don't want her to grow up!  Kate is quite the character, with her great imagination.  I love watching her play because she always comes up with the funniest things.  Just the other day,she told me her pet toy mouse has Down Syndrome and has a hard time hearing, but that it is ok.

This year she started off at the same school she had been at when she was in preschool.  Well then, things got rough financially, so we decided to pull her out and homeschool for the rest of the year as the public school in our district sucks.  I had already seen how well she did last year and one of our concerns this year was that she wasn't going to be challenged enough.  Well, being at home, I have seen just how bright she really is.  She loves doing schoolwork at home and doesn't usually complain as long as it is somewhat fun for her.  She has a pen pal that she writes to, and she writes letters to her Uncle Mike and Poppy(even though he is 20 minutes away.)  She also has started to write stories, which she really enjoys. She pretty much does it all the spelling on her own, and even adds different punctuations in there as well.  She has done amazing with her reading and comprehension.  Just yesterday at the Doctor's office, she sounded out pharmaceutical.  I really love watching her get excited when something that she is learning just clicks.  Since she has been homeschooled, she has joined Daisy Scouts, Awanna(bible study), and recently started cheerleading.  She loves participating in all these activities and getting to be around her friends.

For Kate's birthday, Grandma treated her to some time at the salon getting her hair and makeup done.  She enjoyed being treated like a princess and even brought her princess crown for her hair.  Tomorrow, we are just having a little family party, which includes her friend, Mya that she has been talking non-stop about her coming!

Kate has definitely made these past 6 years memorable.  She is such a sweet, funny, intelligent, kind, chatty girl, who sometimes can be sassy, but that is ok!

Hopefully after the weekend, I will be able to post pics of the princess.

The Challenges Of Raising A Child With Down Syndrome

Often people wonder about the challenges that go along with raising a child with Down Syndrome, so I thought I would share my experiences.

• Having to constantly deal with Kylee's happiness can be very challenging.  She almost always wakes up happy, even if she just spent half of the night awake playing.  It's not easy to wake up to that smiley, happy girl, but alas, it has to be done.
• Since having Kylee, I've encountered a great support system online and in real life.  When you have a child with Down Syndrome, you acquire a great, new family.  Having such great support can be really hard sometimes, but it is what we do to help each other.
• Also since having Kylee, I've come to appreciate the little things more.  When Kate was younger and reaching milestones, I was excited, but I don't think I ever got so excited about her being able to stack blocks or point to certain objects in a book.  When you have a child with Down Syndrome, you tend to get excited over every. little. milestone.  It's a lot of work to get all excited, but hopefully it will get easier.
• I have come to have more respect for people that don't fit the perfect mold of society.  Oh, if only I could go back to not feeling this way.
• Kylee can be very sweet and when she wants to she will give you a hug, but she hasn't gotten to the point yet where she gives out hugs all the time.  When I volunteered at a Down Syndrome camp this past summer, the kids there just wanted to hug on you all the time.  Experiencing that was hard, but I didn't want to make them feel bad so I just sucked it up and received many hugs.  I'm hoping that Kylee won't be that way because I can only imagine it is hard to feel that kind of love from your child.
• Seeing the therapists get excited about the progress that Kylee continues to make is another challenge. I don't understand how they can get so excited, but whatever, I just humor them and pretend I'm excited too.
• Since Kylee was born, she has been so easy going and has had slept through the night since she was born.  Luckily, at the beginning we were told to wake her up for feedings, but after a few months, we had the dreaded task of sleeping all night. 

Hopefully, overcoming these challenges will get easier.  Having to deal with this happy, sweet girl all the time makes it hard.... Bazinga(for those who have watched Big Bang Theory, you will get that comment)

Anyone else care to share their challenges?

Worthy of Life

So often individuals with DS are seen as not worthy of life and often people talk about how much they "suffer from Down Syndrome."  In an article about a new test coming out that can detect DS prenatally, one ignorant poster made such a disgusting comment that it just makes me wonder why one would think one life is less worthy than another just because of an extra chromosome.  Here is said ignorant comment....If you can prevent suffering, wouldn't you? Perhaps something like Type II diabetes -- a disease that is usually adult-onset and easy to manage with proper attention -- wouldn't be worthy of an abortion, but something as serious and disabling as down syndrome? I know that the individuals who have it often lead relatively good lives, but they die young and often suffer quite a bit during their lives.

I would urge the parents of these children who advocate against testing or termination upon a positive test to examine how much of their opinion is based upon their own need to care and love for their child. Yes, your child is likely wonderful and kind -- most people with down syndrome are incredibly nice -- but are all the struggles they go through worth it? Wouldn't it be good to abolish something as clearly problematic as down syndrome, to effectively cure it?  

The only thing that needs to be cured in regards to Down Syndrome is ignorance.  I could go on about my feelings on this, but I think this mom of a beautiful girl with that extra something does a pretty good job at summing it up with her video she made of some beautiful soles with Down Syndrome.  When you click on her blog, scroll all the way down to the bottom first and pause the playlist and then scroll back up to the beginning and watch the video, but be warned, you may shed some tears as the song is very fitting to those beautiful children.

http://babynumber10.blogspot.com/2011/01/worthy-of-life.html

One Year Ago

Ok, so it was a year ago yesterday... Kylee had open heart surgery to repair multiple defects and did absolutely amazing!

By looking at Kylee you would never know she had had heart surgery.  She is a ball of energy.  Sometimes, it seems as if she has had a whole pot of coffee with as much energy as she has.

She is such a sweet, silly, beautiful, yet stubborn little girl!  We are so blessed to have her(and Kate) in our lives.

Yesterday, we had heart cupcakes and sang to her, which she thought was funny.  She sure did love her cupcake though as you can tell in these pictures.

Case Of The Mondays

This is what Kate said the other morning as she came out dressed up like she was off to work.  She said, "Well, i didn't sleep very good last night, but i'm off to work.  I have a case of the Mondays!"  She is so silly.

The girls had a great Christmas, although Kylee just preferred the wrapping paper over the presents.  

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Kate was very excited this year and counted down the days to Christmas.  

Both girls have been doing well, health wise.  Kate had some issues with her allergies bothering her for a few weeks and Kylee had a couple days with a fever due to an ear infection, but other than that they are doing well.

Kylee had a visit with the neurologist a month ago.  Her therapists recommended having her checked out due to the fact that when she crawls, she sticks her left leg out and now that we are working on walking she has issues there as well.  The faster she goes or the harder she tries, the worse it is.  Because of this and the fact that she had some oxygen issues when she was born, they recommended seeing a neurologist.  After meeting with the neurologist, she said that Kylee does have a very mild case of Cerebral Palsy, where it is only affecting her left leg.  She did say it won't get worse and if it starts to interfere more with walking, then we will look at getting a leg brace, which will help.  So far, though, she is doing great.  She loves to stand, and will take steps by herself, but only if she thinks you are supporting her.  I can just barely touch her and she will take a few steps, but the second i take my finger away, she plops down.  She also loves to have races with her walker against Kate and Daddy.

She really is doing great overall, though.  Still working on a few things as she can be very stubborn and refuse to feed herself or say words or signs when she knows perfectly well how to do these things.

Kylee got to meet her online "boyfriend!"  Bennett is sooo cute with his big brown eyes.  Another mom, Christy, that lives in the area who has a little cutie with Down Syndrome and I met Bennett, his mom Adrienne and his family as they were visiting out of town family.  I know his mom from facebook and blogging.  Bennett is so cute that Christy and I always joke around as to which of our daughters will get to marry Bennett.

Bennett

holding hands

Arden, Bennett, Kylee, and Bennett's sister

Here is Kylee's best buddy Ava.  Kylee and Ava are practically twins.  We try to get together a couple times a month.  Ava is one month younger than Kylee and also sports an extra chromosome and has the same two heart defects as Kylee, which like Kylee she had successfully repaired last year and did amazing.