Worthy of Life

Blog Slacker

2011-07-13T23:52:00.008-04:00

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

2011-02-08T22:05:00.000-05:00

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

2011-02-05T22:08:00.001-05:00

Happy 6th Birthday Kate!

2011-02-04T01:25:00.001-05:00

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

2011-02-01T11:37:00.003-05:00

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

2011-01-28T03:34:00.002-05:00

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

2011-01-14T21:38:00.000-05:00

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

2011-01-11T20:59:00.009-05:00

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.

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.

An I-Pod Giveaway

2010-12-09T21:33:00.002-05:00

A fellow mom with a little girl with DS is giving away a free i-pod touch with a built-in camera. All you have to do is check out her blog HERE and get the full details. Basically, you donate to this little sweet orphan's fund.

So, you donate to this little girl's adoption fund either via the link on Patti's blog or you can click HERE to donate. After you donate, you leave Patti a comment that you did so and you get a chance to win the free ipod touch. If you blog about the giveaway, you get another chance, if you tweet about it, another chance, facebook about it, another chance, or if you become a follower of Patti's blog another chance! If you haven't looked at her blog, you should, it is inspiring! She has 10 kids and they are beautiful!

Olga is almost 5, has Down Syndrome just like Kylee and is facing a mental institution if not enough money is raised for her adoption fund. There are plenty of parents who would love to adopt, but the cost of international adoption is not cheap. Unfortunately, when the children turn 5, they are placed in an institution.

If Olga has a huge amount in her fund- bank on it- a family will come forward to adopt her. There's not a lack of families who want these babies- there's a lack of finances.

Please spread the word, and please pray for Olga.

A Day At The Park

2010-11-29T23:51:00.001-05:00

Taking good pics of both girls is actually no day at the park, but we did manage to get a few!

when one is smiling, the other is not!

oh how Kate loves to pose for the camera!

sorry, Uncle Mike, i tried to get some decent pics of Kylee, don't know if any of them will work or not. will be taking some more pics at the old folk's home(aka mom & dad's house).

Tis The Season For Giving, Help Out A Child In Need

2010-11-28T23:26:00.002-05:00

This precious cutie with Down Syndrome is Melanie! Isn't she adorable? I have seen her face many times over the last couple of months and today after dressing Kylee up to go outside in her oversized jacket and hat just like Melanie's hat, she reminded me of Melanie. She has many things in common with Kylee. Well, they are both adorable, they both have Down Syndrome, they both have heart defects(although Kylee's has been repaired) and they both have loving families. The one thing they don't have in common though is that Kylee is able to be with her family, whereas Melanie, although she has a loving family that is in the adoption process, they have to overcome the obstacle of raising enough money to bring her home!

There are many precious little ones like Melanie that are born in Eastern Europe with Down Syndrome that are thrown away in orphanages. If they are not adopted by 4 to 5 years of age, they are placed in an institution. This holiday season won't you please considering donating to this little cutie pie, Melanie to help bring her home to her forever family.

From what i have read the adoption fees are quite expensive, but bringing this little girl home to her family is priceless and definitely worth the cost!!! Please check out the link below, all donations are 100% tax deductible.

Like i mentioned, Melanie also has heart defects as well as intestional issues, both needing surgery, which is all the more reason for her to hurry home to her family. This season when you are out buying gifts for your loved ones, think of Melanie who is need of the greatest gift of all this holiday season- to be with her loving family. So often we take for granted the things we have, for once we need to think of others.

You can also check out her button on the side of my blog for updates on Melanie.

http://reecesrainbow.org/sponsorsader

Down Syndrome

2010-10-31T17:15:00.002-04:00

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

2010-10-29T15:01:00.000-04:00

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!

2010-07-13T12:45:00.000-04:00

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

2010-07-04T19:46:00.000-04:00

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!

2010-06-18T01:03:00.010-04:00

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!

2010-06-12T09:57:00.007-04:00

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

2010-04-27T11:31:00.006-04:00

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

2010-04-11T23:46:00.012-04:00

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

2010-03-18T09:43:00.000-04:00

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!

2010-03-14T22:51:00.001-04:00

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

2010-02-27T11:51:00.003-05:00

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

2010-02-11T21:36:00.002-05:00

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!

Just Some Pics

2010-01-31T21:53:00.001-05:00

ok so its not easy to get pics where they both cooperate, but oh well

Dress Up Time With Grandma

2010-01-30T20:23:00.003-05:00

My mom loves to use Kate as her little doll to dress and play with. Today was no different. Here are a few pics from today.

doesn't she look so smart!

Kate changed her name to Josephina because she said now she looks more like her boyfriend Joseph.

Kylee still continues to well. She has gained a pound since surgery. The cardiologist was so impressed with her last echo. He said her function looks great and she has a little bit of constriction in her pulmonary but more likely she won't need any more surgeries. Her oxygen saturations are still at 100%! I'm so amazed at how well she is. Her only complaints right now seem to be teething and digestive issues from her iron.

On Tuesday we will be celebrating Kate turning 5! How time flies. She is super excited and anxiously awaiting Uncle Mike, Aunt Nicole and cousin Austen's arrival for her birthday party.

Cardiology Visit

2010-01-22T18:06:00.000-05:00

Today was Kylee's 1 week checkup with the cardiologist and it was rather boring, which is good. Everything checked out fine and we don't have to go back until 3 months unless there is an issue. Overall she is doing well. She still seems to be bothered by teething and doesnt really like when she has the hiccups and her sleeping at night is a little off. Other than that, she is just a happy baby.

Kate had her first heartbreak the other day. We went to the park with her "boyfriend" Joseph and they had a little issue which ended up with Joseph not wanting to hug Kate or hold her hand, which made Kate hysterical. Although she was upset it was a little humorous. Joseph did end up doing both not willingly though and Kate cried the whole way home saying, "Joseph didn't want to hold my hand!" He ended up calling her later and said he was sorry and he just needed a nap. Those two are so cute!

Kate being crazy as usual

Happy 7 Months

2010-01-18T22:20:00.000-05:00

My baby is 7 months old today! She has endured so much in these last few days and yet she is still my smiley happy baby. So far she has done well, she slept great last night probably trying to catch up on sleep after a few interrupted nights at the hospital. The only thing that seems to bother her is her gums from teething.

5 days post op( this is more just for me to look back on)

All I Can Say Is Wow

2010-01-17T11:28:00.000-05:00

Well, we shall be leaving after they get all her discharge papers and instructions together. It is truly amazing to think only 4 days ago she had her surgery. Yeah!

New Room

2010-01-15T21:45:00.000-05:00

Well, I've gotten my snuggle on for quite awhile today. In fact, Kylee didn't like for me to put her down, which is ok. We moved to the step down room about 4, a little later because they were waiting for a room. I am really amazed how fast she and some of the other heart kids I've seen progress. Right now they are weaning her off of her o2. She is on 0.3 liters and she is her sats are at 100%. She is only taking lasix, which helps get rid of some excess fluid and tylenol as needed, which she just had because she seemed like her gums were bothering her. Her congestion in her upper airways has gotten better after they gave her a good suction earlier. I know she can still have setbacks, but still it is amazing how much she has progressed in 2 days after having major open heart surgery.

Thank you lots for all the prayers and thoughts. It really means alot to us to have people we don't even know very well(as well as ones we do) send their well wishes.

Possible Step Down Room This Afternoon

2010-01-15T10:30:00.000-05:00

Kylee is still doing pretty well. They are probably going to send her to a step down room this afternoon if they have a room available. She is getting her all her ivs out, except for the one in her hand. They took her off of her bp medicine this morning. She hasn't really been overly irritated today, she just gets upset it seems when she sees me and realizes I can't pick her up. She also has gotten to eat and got pretty upset apparently when they stopped feeding her. At first they can only give her a little to make sure she can tolerate it. But she had about 3.5 oz at her last feed. My little chunky monkey. We have had a couple scares since yesterday with her o2 sats dropping, but fortunately both times the o2 hose had popped off the wall. This am she is only on 1/2 a liter of o2. For awhile there with the o2 being off she did do pretty well. So although I am excited that she is doing so well, I'm also nervous because more of the care will rely on us. But this means I will get to hold my baby! Yeah!

Please continue to keep her in your thoughts and prayers that she continues to recover well!
Thanks

Pics From Today

2010-01-14T16:23:00.000-05:00

So Kylee looks alot different today, so I thought I would post a couple pics

So Far So Good

2010-01-14T12:36:00.000-05:00

Despite being irritated, Kylee has been doing well. They extubated her today.(took her breathing tube out), they also disconnected the external pacemaker, as well as took out her chest tubes. She has handled it well so far even though when she isn't medicated enough she gets mad. She is on the nasal cannula with 1liter of o2. Apparently kids with down syndrome have a harder time getting settled. They are working on getting her lungs clear and doing chest therapy. I'm trying not to get my hopes too high because i know setbacks can occur, but so far so good.

Thank you for all the prayers, thoughts, encouragement! It is definitely appreciated. Please continue to pray that she does well.

My Poor Baby

2010-01-13T18:34:00.000-05:00

She looks so pitiful, although i've seen many pics of kids after heart surgery it is still different because it is your baby. Despite looking pitiful so far she is doing well. She will be sedated tonight and some tomorrow and depending how she does they may try to pull the breathing tube out. She also has a little bit of junk in her lungs which they suctioned out, but of course it scared me because her respirations started to drop. I guess this is normal but still scary. Anyways, continue to pray for her that she recovers well. We will probably see her for a little more tonight and then try to go and sleep since there shouldn't be much activity tonight.

Her poor tongue is going to dry out.

She is on a few meds for pain & sedation, then a couple for her heart.

Out Of Surgery

2010-01-13T14:51:00.000-05:00

We spoke with the surgeon about 45 min. ago and he let us know that the surgery went well with no problems. He was able to do the repair the way he wanted and said that because he was able to dilate her outflow tract instead of the other way he talked about, there is a very little chance that she will have to have any further surgeries to replace the valve. We will get to go back and see her in a little bit.

Thanks for the prayers and well wishes!

Another Surgery Update

2010-01-13T11:19:00.000-05:00

Kylee is now on the heart lung bypass machine and the nurse just came out to say they started working on the heart and things look good. Please continue to keep Kylee in your thoughts and prayers.

Surgery Update

2010-01-13T10:31:00.000-05:00

Just a quick update. Surgery was a little delayed this morning. They had a lung transplant in the OR and had to finish cleaning up there. They didn't take her back to the OR until 9:15 and they just let us know that surgery started. She was a little irritated because she couldn't eat, but other than that she was happy as usual.

Will update again later.

Surgery Tomorrow

2010-01-12T16:09:00.000-05:00

So we had a long day of tests today and met with the surgeon. First Kylee had bloodwork and was not very happy. After that she had a chest xray, an ekg and then a sedated echo. Poor Kylee was so sleepy when they sedated her. They just gave her some sleepy medicine, monitored her and did the echo, but when she woke up, she was out of it. The check in time for surgery is 7:15 with surgery starting at 8:30. The surgeon anticipates it will take about 4 hours. As far as how long her anticipated stay is in the hospital, the nurse told us 5-7 days, the surgeon said 10-14 days, when he originally said 2-3 weeks, so who knows how long she will be there.

I will try to update tomorrow when surgery is underway and when we receive updates. Please keep Kylee and us in your thoughts and prayers! Thanks

New Accomplishment

2010-01-11T07:49:00.002-05:00

Kylee has now figured out how to roll from her back to stomach. She used to try so hard to get off of her stomach and onto her back, now she seems to enjoy her new skill.

not sure what kind of face this is but thought it was cute!

Tomorrow we go to have all her preop tests done and we will just stay out there as the hospital is 2 hours away and we will have to arrive for surgery early Wednesday. I still don't know the exact time but one of the assistants said probably check in time is 6:30. So I have alot of packing to do today, not to mention try and get the van fixed as it has decided to eat ALOT of gas, get a tooth pulled and take Kate to the allergy Dr.

I will try to update tomorrow after we get settled as to what time surgery is scheduled for.

Just Because She Is Cute

2010-01-05T20:36:00.002-05:00

1 Week To Go

2010-01-05T20:08:00.005-05:00

Recently Kylee has been sick but thankfully is feeling better. She is almost always congested, but she developed a cough that was worse than normal. Due to her heart defects I always like to take her to the pediatrician to make sure she hasn't developed any infections. Well the ped. started her on amoxicillian as a precautionary measure and then sent Kylee for an chest xray. Well the xray showed that she had a little congestion(mucous) on her rt. lung. I figured because of this surgery would be delayed, but since she doesn't have any infection surgery will still be next wed, the 13th. She will go for another chest xray thursday and see the pediatrician after that to make sure everything is fine. On the 12th she goes for all her pre workup stuff which from what i gather will be a long day. They will also tell us what time her surgery will be scheduled for.

Kate has still been playing mother to her 3 babies, Jenna, Sienna and Shika(don't know where this name came from). Jenna had her heart surgery and did great. She instantly grew right after!

before surgery

after surgery

Kate took the little baby into her room and came out after surgery with the big baby and said, "look she grew." Baby Sienna needs some toys so Kate has packed a diaper bag because she tells me, "you need to drop me off at babies r us and when i'm done i will call you." Yesterday when i went to pick her up at school we were walking out with her boyfriend(this is what she calls him) Joseph. He is so cute and sweet and when we got to the car he said to Kate, "do you want me to open your door for you, i'm strong." Then he told her to be careful.

As far as the adults in the house, well that's a whole other story i don't feel like getting into. It would be greatly appreciated to have prayers and thoughts sent this way! Thanks

Meet Sienna

2009-12-30T22:26:00.002-05:00

Our newest addition to the family....

Sienna

This is one of Kate's babydolls that she has playing mommy to. First she fed her a bottle. She used Kylee's after she was through with it. Then she put her in the high chair so she could feed her oatmeal.

Kate telling Sienna to smile

Kate said "here comes the airplane coming in for a landing." And yes it's real baby oatmeal.

She's too funny! I asked her if Sienna ate all her oatmeal. She said, "aww, it's just pretend." She also has another doll named Jenna. Poor Jenna has to get her heart fixed just like Kylee, but lucky Jenna only has to be in the hospital 2 days! I couldn't get her pic because she was asleep in the swing and we didn't want to wake her.

Christmas And 6 Months Old

2009-12-29T11:27:00.006-05:00

Hope everyone had a good Christmas!

Despite being sick, Kate had a great Christmas and when she woke up Christmas morning, she said "what happened?" She was also very excited to get to spend some time with Uncle Mike and even went to see the new Alvin and the Chipmunks movie with him. As I mentioned, Kate has been sick with what is probably a lingering sinus infection. Poor thing, she had a fever for a couple days, and has tons of congestion which makes her cough almost to the point of gagging. I took her to the Dr. on Saturday and he gave her another allergy med and some nose spray which has helped. Even though she is sick this doesn't stop her from being wild and crazy like normal.

Kylee has been doing well. She turned 6 months on the 18th. She did have another checkup with the cardiologist a couple of weeks ago and surprisingly her o2 sats were in the low 90s. For a baby with her heart defects that is really good. She had her 6 month checkup with the pediatrician and let's just say she was not happy. They had to test her thyroid levels(which came back normal). They tried to get blood out of her heel twice with no luck, then twice in her finger which finally worked. Then after all that she had to get both flu shots and another shot. She ended up crying and screaming for about 15 minutes. She will have to go back one more time before surgery for more shots.
.
I can't tell you how much she can brighten your mood. She almost never cries. She loves to smile(except when trying to take her pic), talk, and loves to be tickled. She will laugh in anticipation of being tickled, which is really cute! She is such a sweet sweet baby!

It's hard to grasp that in 2 weeks she will have to have open heart surgery. Although we are excited for her to have her heart repaired, we are both scared and nervous. I tend to go through a mixture of emotions daily, but it is hard to stay upset when she just looks at you and smiles. As far as her surgery goes, she will go in on Tuesday, Jan. 12th for all her preworkup stuff and then we will talk with the surgeon and go over everything. I will be bringing the laptop with me, so I will try and update as much as possible on here as this will be the easiest way.

Here are some pics of the girls, mostly Kate. Even when she is sick, she still likes to be silly and pose for the camera.

Kate said this is the face that the bird made on her tinkerbell movie!

Oh, I'm working on changing the background on here so it's easier to read, but am having a hard time doing it myself, so i'll have to enlist the help of my husband.

Our Busy Week

2009-12-11T18:03:00.001-05:00

We have had a busy few days full of appointments. Last friday, Kylee had her last cardiology appointment before her surgery. Since she is doing good, the dr. didn't feel the need to have her come back. Her o2 sats were at 87% and she weighed 13lb 10oz. We had the surgery rescheduled and it will now be the 13th instead of the 11th. The surgeon does not want her to have tubes put in her ears until after her heart surgery. She had an appointment yesterday to receive her shot to protect against Respiratory Syncytial Virus, which she hated. She passed the 14lb mark at 14lb 2oz. The pediatrician mentioned that at her 6month appt next week she will have her thyroid tested, which is standard procedure for kids with down syndrome, but she also has a low body temperature which can be a sign of thyroid problems. Her temp. yesterday was 95.9. She also had her 3 therapy appts, which are nothing different.

Kate had her speech therapy appt and is doing so well that she will probably only have 2 more sessions. She flipped out at the dentist, which they only were cleaning her teeth, but they first tried the electric toothbrush which was quiet, but for some reason she was scared of it. Lastly, she went to see the ear, nose, and throat specialist because she is always sick with cold like symptoms. For the next 6 weeks she will take an antibiotic and then they switched her allergy meds, but more than likely after Kylee's surgery, she will have her tonsils and adenoids removed.

Yesterday, we took Kate to Chuckee Cheese to go play with her friend from school, Joseph. Those 2 together are soo cute! They are always hugging each other at school and get so excited to see each other. When we were there another little girl and asked Joseph if he wanted to play. They went up in the tubes and Kate loudly said, "she stole my boyfriend! I'm coming Joseph!" For 5 hours they ran around and played games, ate pizza and ice cream, held hands. We also had fun getting to know Joseph's mom, Mandi. They actually live less than a minute down the road from us.

Kate's reading skills have really taken off. She can recognize a ton of words, but she also can sound out alot of words as well. Somehow she was able to sound out down syndrome today. She amazes me! She is really looking forward to christmas as well as Phil & I. Next week is our last week of all appointments until Kylee's surgery. We don't to take any chances with her getting sick especially right before surgery for 2 reasons. First, if she gets sick before her surgery, they may have to postpone it and their schedule is pretty busy and we wouldn't be able to get her in until Feb, unless of course she started having problems. Second, if she gets sick, it can really pose risks for complications with and after surgery. Being in the hospital for 2-3 weeks is long enough, I don't know how others manage with longer hospital stays. One mom, Joye, her little boy Ethan was in the hospital for 9 weeks. Kate is also looking forward to Uncle Mike coming. The other day when we asked her about going to see the person who brings presents at christmas, she said, "Uncle Mike!"

Pics, Pics, And More Pics

2009-12-04T01:15:00.009-05:00

Kylee puts just about everything in her mouth, including her stuffed bear.

I got all my pics that I ordered from Anna today. If anyone wants any, let me know so I can order them from her. Keep in mind that I scanned these pics, so they don't look as good as the original photos which are great!

*Check out a video with Kylee in it that I posted at the bottom of the blog.

Thankful

2009-11-29T11:45:00.001-05:00

Since we had our thanksgiving dinner yesterday, I decided that today would be a good day to say what I am thankful for. There are many many people and things, but the top of my list is of course my 2 sweet daughters, and of course my husband as well, but I feel the need to say I am extremely thankful for these people. And no it is not the lady dressed in the racing gear.

Without these two people I don't know where I would be. They have done soo much to help us, the list is endless from financial help to emotional support, to watching Kate, having her stay overnight, filling our bellies. etc. etc. Even though I don't say it often, my mom is someone I inspire to be. She not only is there for me and my family, but she helps my brother out, she does alot around the house while trying to catch little cat naps before having to work at night, and she takes care of my 91 yr old grandpa. Since my grandparents moved to nc, she has been the primary caretaker of them(now just my grandpa). She does all this while barely taking time to do for herself.

I, we all really do appreciate all you do for us. So, thank you! We love you and Kate says, "I love you parrot."

My Two Sweet Girls

2009-11-28T15:02:00.004-05:00

Getting so big!

My goofball who loves to ham it up for the camera!

Hey!

Another Visit With The Cardiologist And The ENT Dr.

2009-11-26T00:13:00.002-05:00

Nothing too exciting to report at these visits today, which is good news. She had a checkup first with the cardiologist. We took her because she has been a little fussy and gets more tired with feeding. The Dr. said she is stable and doesn't see any new issues, in fact one of her concerns had been with what is called the pressure gradient of her pulmonary valve. This basically has to do with the amount of obstruction or narrowing of the pulmonary valve, the higher degree of obstruction the harder the right ventricle has to work to get blood out to the lungs. Anyways, the number last time was around 115, this time it was 105, which is still high, but the cardiologist said it is nothing to worry about, it is typical of babies with tetralogy of fallot. She hasn't gained any weight, she was 13lb 5oz. The nurse had weighed her twice and I told her I didn't think it was right because it said she was 16 lbs and that would mean she gained like 2 &1/2 lbs in 1 week, but she insisted that that was what it was. Needless to say, the Dr. had her get weighed again. Her o2 sats were down from 90 last time to 84, but for her it is still good.

After her cardiology appt, we went to see the ear, nose, and throat Dr., but he really only checks her ears. So the plan is to talk to the surgeon who will do the surgery on her heart and see if he is ok with letting the ENT put tubes in her ears the same time as her heart surgery to prevent her from having anesthesia twice. We will also see if they can do her hearing test then which also will require her to be sedated. She initially failed the test for her left ear, but they are unsure if that is due to the fluid in her ear or not. Hopefully the surgeon won't have a problem with this. The placement of the tubes and the hearing test together should only take about 30 min.

So the only conclusion we came to was that her irritability could be due to teething and/or congestion. Other than this, she still smiles. laughs, talks and is happy most of the time. Kate on the other hand.....

Happy 5 Months

2009-11-19T01:08:00.005-05:00

Today Kylee is 5 months old today. It seems like it has been so much longer than that. She is such a sweet baby and she definitely brightens your day. It is hard to be in a bad mood when she almost always has a big huge smile on her face.

Things about Kylee
she weighs around 13 &1/2 lbs
she is a happy baby
she can roll from tummy to back when she feels like it
she can sit up fairly well when supported
she loves to smile, laugh and talk esp. to mommy or daddy
she loves to be cuddled although sometimes it has to be a certain way or she is not happy
she loves to taste things we eat
she loves talking to her toys but prefers people
she is a happy baby
she is cute
she is working on getting 2 teeth
did i mention she is a happy baby?

I just love her soo much! She has definitely changed my perspective on life for the better.

Today, we had xmas pics done at cousin, Anna's house. She does an awesome job esp. considering it is not easy getting the 2 little ones to cooperate at the same time. Kate is so photogenic and loves to pose(thanks to grandma who has Kate model for pics all the time), but had had enough after awhile. I think Anna said she got about 200 pics.
We took some of our own, so here are a few.

talking to Daddy

are we done yet?

please no more pictures is what is going through Kate's mind

The Many Faces Of Kylee

2009-11-13T14:10:00.006-05:00

Kylee is such a happy, easygoing baby. She is always smiling, talking, laughing, and never really cries.

We think Kylee has been teething because her gums are swollen, she is constantly drooling, and we think we can see the 2 teeth underneath the gums. Plus she is always chomping on anything that comes into her mouth.

We started cereal a month ago, but she only had it a couple of times just to experiment. Well, this past week at feeding therapy we gave her some and she now has gotten the hang of it and loves it. In fact if she sees us eating she will get real antsy and will stare intently at us putting the food in our mouth. When she does eat the cereal she makes the funniest faces.

Kylee had an appointment with the pediatrician yesterday. She actually just needed to get her RSV shot which is something she will get every 28 days until March and it gives her the antibodies to fight off RSV. RSV is a common upper respiratory infection which really is just like a cold, but for heart babies, preemies, or babies with lung disease it can cause complications. She weighed 13lb 4oz and the dr. said she sounded good despite having a cold, which she got from Kate.

Speaking of Kate, we have been playing more games with her and have discovered that she does not have the concept of how to play these games with others. Apparently, she thinks that she should be the one to win all the time. I was bowling with her and I knocked down all the pins to which Kate replied "you are cheating" but apparently it was not cheating when her turn prior she knocked down the remaining pins with her hands. She is a very poor sport and keeps telling us we are cheating and at one point when she was losing, she told me "winning is great and cheating is losing," and then she told me "i'm losing my brain, how does this happen?" When she wins or "thinks she wins", she will point at you and say "I won, into your face"

Phil took her to Target yesterday and let Kate show him all the toys she wants for Christmas. Well she should have just showed him what she didn't want. So, I hope Santa Claus(grandmas) has lots of money :)

Stroller Recall

2009-11-09T15:02:00.002-05:00

For some reason my husband wanted me to post this info. Like I have a ton of people who read my blog AND actually purchase strollers, but whatever.

Maclaren stroller company announces huge recall

Stroller company Maclaren USA announced a huge stroller recall this morning affecting more than 1 million strollers after a dozen reports of children's fingertips being amputated when they put their hands into a side hinge.
Our colleagues at the Consuming Interests blog give us the full details.

The recalled strollers include 11 different models, details of which can be found at the company website www.maclaren.us/recall or by calling (877) 688-2326. The products were sold from 1999 through November 2009 at stores like BabysRUs for $100 to $360.

Just Because They Are Cute

2009-11-09T12:12:00.017-05:00

Future Telemarketer

Quit Your Whining

2009-11-08T20:01:00.000-05:00

Lately, when I am feeding Kylee I spend this time on the computer as it takes her a while to eat, although lately it's decreased from 45min- 1hr to about 30 min. Anyway most of my time on the computer is reading other blogs about down syndrome kids mostly heart babies/kids. There are a ton of blogs out there to read and although I have tried to read about kids who have the same 2 heart defects combined, I have only found a few of those out there. So I usually end up reading blogs of kids with different heart defects, but for all the parents the emotions are pretty much all the same. I know for myself it is quite scary to think about what Kylee will have to go through and it makes me pretty emotional sometimes. Anyways, some of what these kids and families have to go through is more than I can imagine- complications from surgery, multiple surgeries, waiting for organ(heart) transplants, spending countless hours pretty much living in the hospital, and the unthinkable- losing your child. You are probably wondering the whole point of this post by now. Well whenever I feel like I am having a bad day, or have a headache or whatever else, I can't help but think of all that these kids have to go through. Sure it is emotional for the parents, but the child is the one who has to suffer all the physical pain and yet they are such troopers. So if you feel like you are having a bad day, think of these kids and quit your whining!

The Many Quirks Of Kate

2009-11-07T07:58:00.000-05:00

The things that comes out of Kate's mouth sometimes is funny. I'm not quite sure where she learns some of the stuff, although I'm sure she probably has heard a few things around here.

Yesterday, she was on the trampoloine with Phil and she wanted him to jump with her. Seeing that there is a weight limit, he told her he was too big. Her response was " come on fat boy, you can jump."
This morning, Phil was changing his shirt and Kate said, " I see your boobies." Daddy says, "oh yea." She says, "say, no those aren't my boobies" Daddy says, "then what are they?" Kate replies, "your nickles"
The other day I took her to dance and she very seriously said, "Hey, I thought Barbie was going to take me." She has been having more imaginary friends/animals lately.
She likes to run around in circles and fart and say, "ooh, I got the running farts."

Everyday, she is saying new things that make us wonder where she heard these things or how she knows so much. She really is such a smart, sweet little girl!

Pics

2009-11-05T16:08:00.002-05:00

Lately, Kylee has sucking on her tongue which sounds like she is chewing on gum. I actually got a few pics where she doesn't just stare at the camera.

Comments

2009-11-04T05:12:00.000-05:00

I don't expect a whole lot of people reading this blog but for anyone that does and would like to leave a comment, thoughts, words of encourgements, etc, etc, there is a spot belong the posts to do so. Just curious to know who is following up on this.

Cardiology Visit

2009-11-03T20:09:00.000-05:00

Kylee had a visit with her cardiologist today and it was pretty uneventful, which is a good thing. Dr Herlong said she is doing great. She is up to 12lb 13.5oz and her oxygen sats were at 90, which is really good. At her last visit the cardiologist said she would have an echo done, but Dr. Herlong said since she is doing well from a clinical standpoint (meaning she is gaining weight, no change in color, no problems with feeding, etc.)then there was no need to have one done. Although I was sort of looking forward to see if there were any changes going on in her little heart, I was happy to not have to wait around any longer than we already did and to know she is doing well enough in his eyes is reassuring. So now the only thing the Dr said to do until her surgery is to keep from getting sick. This information should be passed along to his nurse/assistant. For some reason she felt the need to try to kiss Kylee. I probably wouldn't care too much, but come on it is cold and flu season and lady you work with kids that have heart problems. If they get sick, it is far worse for them than other kids. I'm guessing she probably doesn't know this seeing as she always refers to my child as "him." Other than that she is very loving, but just in the wrong way. We don't follow up with the Dr. until 1 more month, yea!

Did You Know?

2009-11-02T19:00:00.002-05:00

Just something to think about.

Did you know?

* Congenital Heart Defects are the #1 birth defect.

* About 8 in every 1000 babies (almost 1%) are born with a CHD.

*Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. * not minimizing the need for any pediatric cancer research*

*Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.

And We're Rolling!

2009-11-02T18:47:00.000-05:00

Ok, we aren't, just Kylee and she isn't exactly rolling all over the place, but either way it's still pretty exciting. She finally figured out how to roll onto her back everytime you put her on her tummy. The first time she did it she had a look of shock on her face like she was wondering what had just happened. I know it may seem minor to some parents, but for us because of her down syndrome and her heart defects(which can cause delays due to exhaustion) it is pretty cool!

How Did This Happen?

2009-10-29T20:07:00.003-04:00

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

2009-10-29T19:30:00.000-04:00

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

2009-10-24T22:21:00.001-04:00

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

2009-10-22T23:11:00.000-04:00

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

2009-10-22T11:41:00.000-04:00

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

2009-10-21T02:21:00.000-04:00

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

2009-10-17T23:20:00.000-04:00

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

2009-10-16T17:11:00.000-04:00

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

2009-10-15T17:54:00.000-04:00

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

2009-10-14T22:13:00.000-04:00

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?

2009-10-12T00:25:00.000-04:00

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.