How Did This Happen?

My little sweet babycakes is not a baby anymore.  In 3 months she will be 5.  Even though she can get an attitude and she sometimes has a hard time listening, she is so sweet.  She will tell me every day when I pick her up from school, " I love you"  She can always make us laugh with some of the stuff she says or does like lately she will run up to us and say, "hey, what's that?" and then she farts.  She loves to sing and dance and just started dance school.  She is so smart- she can write all her letters, she can spell some three letter words, she can recognize a ton of words and she knows way too much about the internet.  In fact, most of her christmas list is probably from toys she found online.  You can tell her once how to do something and she remembers.  I was looking for something once and she said, "you go to google first".  It's amazing that this little baby is not a baby anymore.

this is just a proof of Kate's pre-K pic

Trying To Roll Over

Kylee has been working at rolling from her tummy to her back.  She can get from her tummy to her side but can't quite get to her back.  She tries so hard that I don't think it will take her much longer.

At this point I think she is saying she has had enough.

Kate's School Fall Festival

Kate had her school fall festival yesterday.  She had tons of fun playing games, jumping on the bounce house, getting her face painted, and she even got to ride on a horse.

Kate with her teacher Mrs. Courtney, who she just loves.  Everyday she has to go back to her class to  give Mrs. Courtney a hug.

Here she is with her boyfriend, Joseph.  She says she just loves him.  Everyday when it is time to leave they chase each other around to give each other a hug.  When Kate was out sick for a week poor Joseph asked the teacher every day if Kate was coming back to school.  They are so cute!

My mom managed to get half of a smile from Kylee.

Lies, Lies, Lies

So, today Kate tried to pull a fast one on me.   I was making cookies for Kate's school and I needed to refrigerate the dough.  Well I told Kate she could get a drink for herself.  I could see she was standing at the refrigerator longer than usual and could tell she was eyeing up the dough.  So I asked her what she was doing and she just told me she was getting some juice.  I thought I would watch her to see if she would try to sneak the cookie dough.  She didn't know I was watching her.  When she closed the door I could tell she had something in her mouth.  I asked her again what she was doing.  She said, "i'm just getting some juice."  So I said, "is that all your doing?'  Kate says, " I was getting some juice see."  as she is showing me her juice with a funny look on her face.  I said " you know when you tell the truth you won't get in trouble.  It's not nice to lie."  She says, " I know it's NOT nice."  I then looked in the bowl and asked her if she got into the bowl which then she broke down and repeatedly said, " I'm so sorry."  It was quite funny even if she is a little young to lie like that.

A Few Pictures

My cousin, Anna took some pics yesterday of the girls and thanks to grandma, Kate loves to pose for the camera.  Here are a few pics that we took of Kate.  Kylee, on the other hand wouldn't cooperate. 

4 Months Old For Kylee, Not Kaylee

So, Kylee turned 4 months old on the 18th.  Time flies.  She had her 4 month checkup today.  She is doing great.  She is 12lbs 8oz and 24 inches long and she is in the 90th percentile for down syndrome babies and in between the 25th and 50th for babies without down syndrome.  The pediatrician said she looks great and is doing what she is supposed to be doing right now, which is gaining weight for her surgery.  Her pediatrician, Dr. Prakash is great and always is very informative when it comes to her heart issues and everything that we should be doing for her in regards to her down syndrome.  The nurses on the otherhand and most other people we come in to contact with can never ever pronounce her name correctly.  They are forever calling her Kaylee or Keeley, very rarely can anyone be smart enough to pronounce it correctly, which is very irritating.  So, really nothing too exciting at todays visit.  We actually have a very easy week, only 1 drs appt, 3 speech therapy appointments outside the home(actually for 2 of them are for Kate) and 2 therapy visits at home.  Even though it's alot, compared to recently it's actually not.  Now that we have met with all the possible choices for heart surgeons and decided on 1,  we won't have as many appointments.

Just Like Her Big Sister

Kate still sucks her thumb at night when falling asleep. She is so attached to doing this so much that when asked to go clean her hands, she will only wash them with soap & water instead of using sanitizer because she discovered that her thumb doesn't taste very well with sanitizer on it. Kylee will not take a pacifier, but loves to suck on her hands/thumbs and has now gotten more coordinated that she can keep her hand/thumb up to her mouth. In fact today, I layed her on Kate's bed while I gave Kate a bath and Kylee was sucking her thumb so aggressively that she ended up falling asleep. This is an accomplishment for her because she very rarely falls asleep on her own during the day.

Cardiology & ENT

So Kylee went to see the cardiologist for checkup today because she seems to get more tired when eating. Everything checked out good- weight is up to 12lbs 6 oz and her oxygen saturation was at 88% which is around what she has been averaging. The tiredness probably is due to her congestion that she has had. We have a tentative surgery date at Duke for January 11th unless she needs it earlier or the surgeon feels she is well enough to wait until closer to 9 months. She will need to be in the hospital for 2-3 weeks depending on how she does. She followed up with the ear,nose, and throat dr. yesterday because she had originally failed her hearing test in her left ear and they believe it is due to fluid in the ear. The last visit he had talked about possibly placing a tube in that ear. Well he said that when she goes for her heart surgery they will try to look in her ear then and see what is going on because it is really difficult to get a good look due to the really small ear canals down syndrome kids have. Since she doesn't appear to have problems with hearing then we don't feel the need to rush it.

So at the drs today Kate was having Phil draw pictures on the etch a sketch and she wanted him to draw a squirrel which he did and she said "no, no you forgot to draw his nuts. he has 2 nuts"

Just Pictures

Kate being goofy


and doing one of her favorites, jumping off the couch

since i can't get her to smile at the camera this is what i resorted to

Kylee thinks it is funny when daddy puts the medicine dropper on her tongue.

Here she is giggling, which is just so cute!

Trying Oh So Hard

Kylee has been trying so hard to lift her head up off the floor when doing tummy time. She has made great progress considering the fact that before she would just stick her hand in her mouth.



face implant


oh, i almost got it!

whew, that was hard work!

way to go Kylee!

Why Blog?

I started this mostly to record Kylee's journey with her repair of her heart defects and also to keep out of town family and friends who care to share in kate and kylee's lives. i figured this would be the easiest way to update everyone when the time comes for Kylee's heart surgery.