Our Busy Week

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

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

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

Getting so big!

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

Hey!

Another Visit With The Cardiologist And The ENT Dr.

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

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

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

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

Future Telemarketer

Quit Your Whining

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

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

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

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

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?

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.