Down Syndrome

Since October is/was Down Syndrome Awareness month, i thought i would write a little post about Down Syndrome.

There is a high termination rate of pregnancies when there is a DS diagnosis. Why it is so high, i am unsure, but i have some ideas. I believe that alot of people, the medical field included are uneducated when it comes to Down Syndrome. I can totally understand this because when Kylee was born and i received her diagnosis, i was devastated. I thought it was the worst thing in the world and i think alot of that was the fact that i really didn't know much about DS and the images/thoughts i had were outdated things.

So many things have changed for the Down Syndrome community. Many years ago, mothers were often encouraged to place their babies in institutions and of course, medical technology wasn't like it was today. There are health issues that accompany a individual with DS, such as heart defects. Obviously years ago, the medical knowledge and technology weren't like they are today, which would shorten the lifespan of an individual with heart defects. Today, the most common heart defect that accompanies individuals with DS, which is Atrioventricular Canal defect has a successful repair rate of close to 100% and most will come through surgery with zero to little complications. If it is like this now, imagine what it will be like in the future. Kylee had open heart surgery for multiple defects and only had a hospital stay of 4 days... she did amazing. Just think, 10 years from now, who knows what surgical repair will be like.

Early intervention therapy is started shortly after the birth of a baby with DS. Kylee started recieving therapies within 3 months of her birth. I don't believe that the therapies that babies/children receive now existed years ago. With the help of these therapies, children are able to acheive much more developmentally now than years ago. Yes, scheduling therapies can be challenging, but it is all in the convenience of your own home or if your child is in a childcare setting, it can take place there.

When a child starts school they are able to be mainstreamed into regular classrooms. From what i have seen and been told, individuals are far more successful when included with their typical peers. Years ago, there was no opportunity for this. Most individuals, not all have either mild to moderate cognitive disabilities. I read that only about 5% have severe or profound disability.

I have often read different things about what people are afraid of with the possibility of having a baby with DS. First, people believe that it will ruin their marriage/relationships. Studies have shown that marriages are actually better when raising a individual with DS. In fact it shows that divorce rates are much lower in couples with a child that has DS than other married couples. People often feel that this will have a damaging effect on siblings. Most often, this is not the case. It has been reported that siblings often have a greater sense of compassion.

Then there is the financial issue. While yes, medical appointments can contribute to more financial expenses, but there is assistance available. Early intervention therapies are provided at very little to no cost. When the indiviual reaches 18(i think) they are able to receive financial assistance. Before age 18, they are able to receive assistance as well, but in this case the parent's income is counted, therefore some families do not qualify.

People often worry about the future and what will happen when the parents get older. More and more adults are able to live semi independently in group homes, have jobs, even get married, and live much more independent than they were able to years ago.

I have often heard this statement, " i have seen what it is like for a family to raise someone with DS." Then they will go on to say how poor of a life the adult has. Well, if you think about it let's say they are talking about a 20 something year old. What kind of services, medical technology and overall community support was available 20 years ago? Another thing to take into consideration is this- what type of family environment did that individual grow up in?  Was it one that was filled with love and support or one where the family didn't provide such needs.  My point is things are changing for the DS community to help individuals live a longer, more independent life.

I have often heard/read that they(moms) wouldn't want their child to live a life of suffering. For some reason, people think that individuals suffer from Down Syndrome. Honestly, i think the most that they suffer from is the ignorance of others. If individuals with DS are often stereotyped as very sweet loving individuals, then where is the suffering? I think one thing people fail to realize that individuals with DS are just that. They are all individuals, who are unique. Yes, they can very sweet, but they can also be stubborn. They have a mix of emotions just like everyone else. Phil and I volunteered at a camp this summer for individuals with DS ages 10-17. The only suffering i saw there was when the teenage girls were upset because a certain boy was dancing or talking with another girl...sounds pretty typical to me. Sure, there are some differences. It does take them a little bit longer to do things, but given the opportunity, most can do it. Something i heard that really sticks with me... treat your child as if they have a learning disability, not an inability to learn. People often think that individuals with DS aren't capable of lots of things. If given opportunity, time, patience, and compassion, there is so much they can acheive.

Many people say i know i couldn't handle raising a child with special needs. We all believe at some point that we aren't capable of certain things. If you had asked me before Kylee was born if i could handle raising a child with special needs, i would have probably said no, but you just accept and deal with it and what do you know most parents love the journey of raising a child with DS(i know i do). Sure raising a child with DS can be challenging, but raising any child has its challenges. I often feel more frustrated with Kate than i do with Kylee. When Kylee achieves a task, it is so much more exciting because she has worked hard for it. When she smiles her whole face lights up. She is an absolute joy and i am so thankful to have her(and Kate). Having a child with DS comes with plenty of rewards. I have learned to have more patience(although i don't always use it), i have learned to appreciate life more, and i have acquired a larger family. It is great to have such a great support community(although most is on the internet) to share the joys and challenges of raising a child with DS.

When we had an appointment with the geneticist a couple of weeks ago, he stated that many doctors when delivering a diagnosis of DS will deliver it in such a bad manner, which usually is something along the lines of good baby vs. bad baby. He stated and i agree that it doesn't mean it's bad, it is just different. Unfortunately, many doctors will push termination and/or give outdated and incorrect information about DS, which is sad because most patients trust their doctors to give them the best information possible.

In summary, having a baby with Down Syndrome is not something to be feared, in fact it is one of the best things to have happened to me!!

Happenings

It has been quite a long time since i updated and that is because there really is no exciting news to tell about, but i will fill you in on the little tidbits of what the girls have been up to.

First, Kylee has been doing well in the health department.  She has had a couple colds and she did have bronchitis back in July, but that is all.  Developmentally, she has been doing fantastic.  She crawls like a professional now, although she has moved on to bigger and better things.  She has mastered pulling herself up on furniture, people, etc and has also mastered cruising along the furniture.  When she feels like it she can walk well with assistance.  Lastly, in this past week she has been going from a sitting position to standing and just thinks it is the greatest thing!  She has picked up lots of signs, sounds, and a few words.  She is very stubborn though and will only do certain signs if Kate asks her to do it.  Little stinker...i can sit there and ask her to sign more for a good few minutes and she just stares at me, but if Kate asks her, her hands are in position before Kate even finishes asking her.  She will say da da(daddy), baby, all done, bye bye, yeah and yay which aren't exact but at least she says them.  Again, little stinker will only say ma ma when she wants to and she never directs it at me.  I am glad that she is independent but it also makes it frustrating at times especially when it comes to feeding herself and getting changed.  Her therapists and doctors are really pleased as are we at how well she is doing.  I don't think it will be long before she starts walking on her own.  She definitely will do it with help ONLY when she wants to otherwise her legs will turn into jello when you try to get her to walk. 

Kate has been enjoying being a kindergartener.  In fact every new person she talks to she has to tell them, " I'm already in kindergarten!"  She loves school, except for rest time, which she is always saying is boring.  Even though she loves school she hates doing homework.  So far they haven't done much in school except for review which is somewhat frustrating because i know that she is capable of doing so much more than they are doing currently.  Poor thing got tortured a couple weeks back.  She has been having issues with allergies for awhile now with her constantly coughing, so we took her for allergy testing to see what the culprit was.  She is deathly afraid of needles to the point where she doesn't even like being in the room when Kylee gets shots.  Needless to say, being poked 28 times was not a fun experience for her.  We did discover though that she is allergic to 7 different allergens, which i think the biggest one affecting her lately is the ragweed.  Thankfully she has been better so hopefully she stays this way for awhile. 

Kylee being her usual silly self!

Excuse the lack of clothes, but Kylee loves trying to stand after her bath!

Anyways, sorry this update is boring but really other than the little things, there isn't much excitement around here.

Awesome Cardiology Update!

So, Kylee had her 6 month post-op checkup yesterday.  She had a sedated echo to check how well her heart is doing after her repair 6 months ago.  It was so great to her the cardiologist tell us that he was very impressed with her repair and that Kylee doesn't need to follow-up with him until 1 year.  It is truly amazing to me see Kylee go from being born with multiple defects to having congestive heart failure to having a full repair done at 7 months to now.  She is doing so well.  You would never know that she had endured all that in her first year of life.  We are so glad that we were referred to such an amazing surgeon.  Everybody who has seen the images of Kylee's repaired heart has said what a great job the surgeon had did to Kylee's heart.  Although, I don't forsee any future surgeries for Kylee, I am sad that the surgeon moved to Denver for a better position.  Oh well. 

A Couple Of Videos

A cute video of Kylee being tickled.

Kylee has a fascination with the vacuum cleaner.  She takes off when she sees it.

Happy Birthday Kylee!

I can't believe my baby is 1 year old! If only i could have seen a glimpse into the future when she was born, i would have seen how silly i was to be afraid to have a child with down syndrome. When Kylee was born and i found out that she had down syndrome, i was completely devastated. I really honestly thought that her diagnosis was the worst thing to happen to me. I didn't know much about down syndrome, basically all i knew of was outdated information. In this past year, i have realized that my feelings were shared among many mothers who also received the down syndrome diagnosis for their child. Also, in this past year i have witnessed what an absolute blessing Kylee is! Yes having a child with down syndrome comes with extra work which involve therapy appointments and for some extra doctor's visits, but what you get in return is so so worth it! With any child there are going to be challenges. Sometimes, i think the challenges with Kate and her 5yr old attitude are greater than with Kylee. Don't get me wrong, Kate is a great child and is sweet, caring, loving, funny, but she can also have a attitude as well. The accomplishments that Kylee achieves are so much greater because of the all the hard work that is put into it. I am amazed at how far Kylee has come! Going in for open heart surgery at 7 months old was definitely the scariest thing i have been through, but she sure showed us how strong she was by only being in the hospital for 4 days. I could go on and on about how great having Kylee is, but i will keep it short. She is an absolute joy! She wakes up happy and has the biggest smile on her face, her grin is from ear to ear! She has already become an attention seeker and loves to get a laugh out of others! She loves to dance, play and hardly ever cries! I truly feel like i am the luckiest mom when it comes to my girls! Happy birthday to my sweet, precious Kylee! We love you soo very much!  

 

from being in mommy's belly

to the NICU after being born

just plain cute

after OHS

learning to sit

trying to crawl

being cute again

                                            to just being an absolute angel!

  Ok, so the second to last pic is of Kate at Kylee's age, but i just can't get over the similarities!
          
 Kylee just loves to dance as soon as we play this song.  She could be crying but the second she hears it, she starts bouncing!
                       

                                

My Girls Are Getting So Big!

I can't believe it! Both Kate and Kylee are growing up way too fast.

Kylee will be turning 1 in just a couple weeks. It just doesn't seem possible. I know i have said it before but she is such a happy baby! I think she has already tried to use it to her advantage. For example, when it is time for bed and she doesn't want to go to sleep, she will bounce up and down on my lap when i am trying to rock her and then she will laugh and stare at me hoping to get a reaction out of me. She is still doing really well in regards to her health. She will follow up with the cardiologist on July 12th for a sedated echo to get a good look at her heart function. She just got her cranial band to help fix the flatness to her head. So far she has fussed or really payed too much attention to it. They estimate she will have to wear it for 3-4 months, but i think once we notice a difference where it isn't noticable, then we won't have her wear it anymore. Developmentally she has been doing great! She started to do an army crawl and she also has been bearing alot of weight on her legs(which 20lbs of Kylee is alot of weight!).  Edited to add, since i started this post(almost a week ago), Kylee has figured out how to crawl the right way and she gets going pretty fast when she sees something she wants.  She just got braces to support her ankles for standing and when she moves onto walking because her ankles have a tendency to turn out.

I am still amazed at how well Kate has progressed in preschool. She had her graduation this past Wednesday. For a child who likes to talk non-stop and is loud, she sure was really shy and quiet when it came to reciting her lines for the school play. She seemed to be bored as well, as i noticed her pick her nose on a few occasions and let out a few big yawns. Oh well at least she wasn't the only one. She received an award from her teacher called the "radical reader award" because of how well she can read. We are amazed to see how well she can read and the words she reads, for example she asked daddy what psychology means? She was able to read all the kindergarden words without a problem. She also had her dance recital last weekend and she was so excited to get dressed up and put makeup on.  Lastly, she lost her 2 front bottom teeth and the new teeth are already coming in.  She was soo excited when the tooth fairy came as well as seeing her new teeth!

I guess i got a little picture happy!

                                           showing off where her teeth fell out

posing as usual before her dance recital

on stage with some of the other dancers

at her graduation play, Kate is in the yellow shirt

after getting her diploma

with her wonderful teacher, Mrs. Courtney

this is the new face Kylee likes to make, so funny!

 it was also after taking her cranial band off, hence the wild hair

here are a few pics from our photo session for Littlest Heroes Project

done by a great photographer, Melody!

Cardiology, 10months, Teeth, And Photo Shoot

Kylee had her 3 month post op checkup with the cardiologist on 15th.  I'm happy to say there really isn't much to say.  The cardiologist said from a listening standpoint everything sounds good and all her stats were good.  He did mention that the little chunker may be gaining too much weight, but i don't think so.  She weighed 18lbs which is 3 more than what she weighed right before surgery, plus she is only in the 20th percentile for typically developing babies.  We follow up with him in 3 more months and at that point they will do a sedated echo to get a really good look at how her heart is functioning.  Overall a great appointment. 

Kylee turned 10 months on the 18th.  It is hard to believe that in 2 months we will be celebrating her 1st birthday.  Where does the time go?  She amazes me as well as her therapists at how much she is progressing.  Every week when the therapists see her she has improved greatly.  She has figured out how to go from laying down to sitting up, although not the way we would like her to, but nonetheless she has figured it out.  It makes her therapist cringe when she sees her doing it.  She will get her legs spread all the way like she did a split and then push herself up.  Since she already has problems keeping her hips in line, this is why the therapist doesn't like it.  Oh well.  Since she has figured this out, nap time has become fun for Kylee.  She usually will sit in there for awhile just playing with her animals before falling asleep.   She has started to figure out how to scoot around really awkwardly with one leg tucked underneath her.  She is also bearing alot of her weight when in the standing position with assistance.  We have been working on her fine motor skills and she has picked up these things fairly quick.  For example, we have been working on some simple signs, like more(since you can't feed her fast enough) and she can do the sign, as well as clap and wave bye-bye.  Just in the last week, I have been trying to get her to say Mama(just the sound) and she picked it up within the week.  As usual, she is still soo happy except she has been a little fussy on an off, but she just got her second tooth.

Speaking of teeth, Kate has her first loose tooth.  She was so excited when she realized this, but now, she is not anxious for it to fall out.  She could care less when the tooth fairy comes.  She had her adenoids out last Tuesday and did great.  She will still complain that her neck hurts(which i guess is common), but other than that, it hasn't really bothered her.

Sunday, the girls had a photo shoot.  I found this awesome organization called Littlest Heroes Project.  It is made up of photographers all over the us and other countries that donate their services for free to kids 18 and under who have had serious illnesses or disabilities.  As usual Kate loved posing for the camera and Kylee was more interested in trying to eat the grass than look at the camera.  Here is a link to a few of the pics that our photographer, Melody took.  http://snookysmilesphotography.blogspot.com/2010/04/beautiful-inside-and-out-baby.html.

Here are a few other random pics of the girls.

I ordered this cute shirt from another mom with a child who has down syndrome

My Two Silly Girls

So after reading what other moms had to say about keeping their blogs public, I decided for now just to keep it public.  I have been thinking with the large amount of unborn babies with down syndrome who are aborted, it would be good to show how having a child with down syndrome, although a little extra challenging, is such a blessing!

So, the past few weeks have been busy as usual with appointments and therapy.  Kylee is doing great!  She had her hearing test a few weeks ago and she passed in both ears!  She initially failed in the left ear, which was thought to be fluid, but there are no signs of fluid, so no tubes for now.  In a few weeks, Kylee will be getting a cranial band(helmet) to help correct the shape of her head, plus the main reason we decided is due to the asymmetry in her face.  It is very apparent in the mirror.  So she will have to wear the band for a few months.  Since we started thickening up her formula she has become a piggy when it comes to eating, even with solid food as soon as the spoon leaves her mouth, she starts whining.  She loves to eat and of all things, she likes spicy things, hot sauce, mustard, onions!  She finally got her first tooth about a week ago and is working on another one.  As far as developmentally, she is amazing her therapists.  She is on the verge of crawling.  She will rock back and forth on all fours, but when she goes to reach for something she does a belly flop.  If you help her she can move forward a little without flopping.  She has also learned to drink from a straw, which may sound silly, but for kids with low muscle tone, it's a big thing.  She will hopefully be starting with occupational therapy in the next 2 weeks, which will help with working with her hands, such as feeding herself and will help with doing some sign language.  Thursday is Kylee's 3 month post op appointment with the cardiologist, so we're hoping for some good news.  As usual, she is such a happy girl, in fact we went to a little get together for the down syndrome association here in charlotte for new parents and of all the babies, she seemed to be the happiest one.  She has even started to play little games where she tries to kiss your cheek, but as she is going in for the kiss she makes this playful "i'm gonna get you" noise. 

As far as Kate, she is as goofy as ever.  Every day, she is somebody different.  It can even change throughout the day.  She has many different characters she likes to pretend to be, from Sonic the hedgehog, to all different types of animals, Hannah Montana and sometimes she wants you to call her Frank even when we are out in public.  She's such a funny girl.  She has been doing amazing with her reading skills.  Every other night she has to read a book and she knows almost every single word, even complex words.  We went to the school where she will be starting Kindergarten in the fall.  It's a newer school, which is very nice, plus i love the fact that it has a great special needs program for preschoolers.  She is soo excited because this Saturday she is going horseback riding with her friend Megan and then she is having her first sleepover with a friend from school.  Since Kate has been constantly sick, which the doctor thinks because her adenoids are enlarged, it has been contributing to this.  She will have them removed next Tuesday.  So we're hoping this does the trick and will hopefully lessen the amount of times she is sick. 

Here are a few pics of the girls, I've really been slacking in the pic department.  Kylee loves to interact with Kate.  She talks to her, trys to grab her hair, smiles at her constantly and will just stare at her. It's so cute to see them interact with each other.

trying to grab Kate's hair

not sure if she is talking or yelling at Kate

always posing

here's a cute quick video of Kylee trying to get Kate