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

                      

Changing Blog To Private

I've decided to change this blog to private because their are so many jerks out their lately who think it is funny to take pics of kids with down syndrome and make a mockery out of them.  So if you want to continue to do view the blog, email me at jedmunds02@yahoo.com and i will be happy to give you authorization to do so.  It makes it easier if you have a google account, but if you don't you can still view as a guest, but after 2 weeks you have to get a new request from me.  I know it may seem silly but i really don't want everyone to have access to my girls pics(esp Kylee) and make a joke out of them. 

Oh and today Kylee is 9 months old.  She is still doing great.  She had her swallow study done and it showed reflux and that she does aspirate on thin liquids(which means some of it goes to her lungs).  So we just have to thicken her formula and just keep working on strengthing her oral muscles.  Since we have thickened her formula she has actually started to take a lot more formula, which is great.  Speaking of Kylee, gotta go, stinker thinks it is time to get up after only a 20 min. nap!

Look Who's Sitting!

She has been sitting unsupported for a couple weeks now.  She still is a little wobbly, but will balance herself well.  She also has been working on moving around the room by way of rolling around and pivoting herself by using her tummy and her hands.  We have been working on getting in the crawling position but it's very hard to get her hips to stay together.  She also likes to scoot backwards.  Poor Kate, she can't have anything of hers within Kylee's reach anymore, otherwise Kylee gets it and Kate says, "no, no, no."  Not much else going on here, just the usual busy appointments.  We have added 2 other dr's for Kylee to see and one other therapy.  Thankfully the therapy is at home.  She went to see the eye doctor and we found out that she is farsighted in the left eye and has an astigmatism,  so her right eye is stronger than the left and we have to keep an eye on it and follow up with the eye dr in a couple months.  She said it isn't to the point where she needs glasses but may need them in the future.  She will also be going this tuesday for a swallow study test.  This will tell if she is aspirating at all when she eats which can be more common with babies with down syndrome and also it will check for reflux which she has been spitting up alot lately.  Next week she will go and have another hearing test.  This time she will be sedated as it is more accurate.  She initally failed in her left ear and it was thought to be due to fluid in her ear, so we will find out and then after that the ENT dr. will determine if he wants to place tubes in her ears.  She is also going to be seeing an orthopedic dr for a few reasons, but mainly for the shape of her head due to the fact she has always preferred to have her head tilted to the one side(which i can't think of which side it is now).  We have been doing stretches and getting her on her stomach as much as possible and her neck muscle has gotten stronger but we need to see if the dr thinks that the shape of her head will correct itself over time.  Hopefully it will.  Because of this the rest of her body has shifted and her physical therapist recommended getting her spine and hips checked out.

Sorry for all that boring stuff, but that is how exciting things are around here.  Kate is still loving to play pretend with her dolls.  In fact she asked me the other day if when she was 10 if she could have a baby!  She was disappointed when i told her no.  She has been excelling at school(if there is such a thing at pre-k).  Her teachers are very impressed with how much she can read, as we are too.  In fact i am trying to get her transferred to a different school when she goes to kindergarten as the school that we are in the district for is very old and has mold problems, but her teacher had said that the she would be alot more challenged at the newer school.  A couple of the teachers have even said that if she were tested right now, she would be at a first grade level.  I don't know where she got her smarts from, but there definitely not from me. We are thinking it is because she is a lefty.

When i asked to take Kate's picture she immediately starts posing!

8 Months Old

Ok so i started this awhile ago, just have had no ambition to finish. 

8 months ago today Kylee was born.  It was definitely a day that i won't forget.  What was supposed to be a joyous and exciting time quickly turned into something devastating to us.  But as the initial shock of the down syndrome diagnosis wore off and despite the heart defects the devastation quickly subsided and she was just a sweet and precious baby.   Fast forward to today and although i am well aware of the fact that she has down syndrome, it doesn't define who she is.  She is such a sweet, happy baby.  Yes she has therapies every week and visits the dr's offices more often than not.  Yes there is worry about the future for her.  And yes there will always be worries about her heart even though it has been repaired.  But all this quickly goes to the back of my mind when she gives you one of her great big smiles.  As a friend and a heart mom to her son Nicholas who also has down syndrome, Lisa said the world would be a better place if everyone had a son like her Nicholas and i feel the same way about Kylee.

So Kylee has definitely changed since her surgery.  She has alot more energy, she has gained about 2 pounds and is now up to 16 lbs 12oz.  Her new favorite things to do are rolling from her back to her stomach, blowing raspberries, and babbling alot.  She is still working on getting her bottom tooth which is almost through.

Now she has been doing awesome with sitting.  She can sit for a few minutes at a time, sometimes a little wobbly and sometimes not all the way up, but nonetheless she is sitting!  Her therapist was thrilled with how well she is doing, she was expecting some regression from her surgery.  She has also tried scooting on her tummy a little which is a start to crawling.  Also, she is loving her feet.  She will get her feet up to her mouth sometimes both at the same time.

Kate had her birthday party at Chuckee Cheese this past weekend when Uncle Mike, Aunt Nicole, and cousin Austen were here.  Although that place was crazy, she had fun.  She definitely had fun with her cousin and was sad when he left.  Her teachers at school are really amazed at how well she can read.  She can not only read short words, but she can also read the bigger words as well.  It is so amazing at how much she can read.  She has been reading books to us at night instead of us reading to her.

Here are a few recent pics.

she chewed on her bib so much, she fell asleep

doesn't look like she has a problem with eating, does it?

looks like she is posing

i tried to get some shots of her sitting, this is the best i could do.

not sure what this face is

Kate reading to herself

Kate's 5th Birthday And A Whole Lot Of Pics

Last Tuesday was Kate's 5th birthday.  It's hard to believe that that much time has gone by.   Although she can be your typical 5 year old and have problems with listening and being sassy, she is such a sweet girl.  She is such a smart girl and can already read a ton of words as well as some books.  She amazes me with how much she knows.  She loves to have fun, sing, dance, and be just plain wild.  Babycakes(as we constantly refer to her as) is definitely a daddy's girl and does not like for daddy to give mommy or Kylee any attention. 

For her birthday, we went to Extreme Play or as Kate calls it the jumpy place. It is a bunch of inflatable bounce houses with slides.  She had a ton of fun and went with her boyfriend(as she repeatedly calls him) Joseph.  She was so excited when he brought her a dozen roses.  They are so sweet.

On Saturday, we had a little family party for her.  She had alot of fun playing with her cousins, Marissa and Garrett.

She is one spoiled girl!  She will be having a party with her friends from school next saturday at Chuckee Cheese.  She is so excited because Uncle Mike, Aunt Nicole and Austen will be here.

Both girls had appointments with the ear nose and throat dr. Both girls have been sick free for the last month, so when we went to the dr, he wanted to postpone having Kate's adenoids and tonsils taken out since she has been feeling well.  Well of course we get home and Kate started to have a real raspy throat and a cough, so if she keeps getting sick then we will go back to the dr and talk about getting them removed.  He said her adenoids are bigger which can definitely cause her to be continuously sick.  As far as Kylee, she will have her hearing tested again in her left ear to see if she passes. He doesn't really want to put tubes in yet because her left ear canal is really small.  Kids with down syndrome have smaller ear canals but he said hers is really small which can make putting the tube in a little more difficult.   Overall she is doing really well.  She has a ton of energy and is growing like crazy.  She constantly smiles and laughs.  In fact she will anticipate when you are going to tickle her and will giggle before you do it.  She also has been babbling alot and blowing raspberries.  Lately she has been very cooperative for the camera hence the reason for the abundance of pics!