Week 16 - A Very Late Post.

So, this is the end of Week 16. I meant to post a lot earlier, but I have been a very busy mother.

So, at this week's appointment we had no adjustment to her NAM at all. The doctor was very happy with the taping and the movement Kaylee is showing. She is also very impressed with the way her nose is shaping up. I cannot believe how good it looks myself. We were also asked if we would volunteer to show how taping is done for their website which they are developing now.

For Week 17 we are going to be seen by not only Dr. H but also a new pediatric dentist who is learning the technique and will be working with Dr. H soon. She is getting so much work being the only Dr. in Denver who does the NAM treatment (as far as I know). We will also be photographed again for this visit as well.

I've decided that I am going to train for a 5K. It is for the Hot Lips Hustle 5K run walk. It is a fundraiser to help kids with cleft lip/palate in countries which has little treatment options. It is in Georgia in September so I would like to try to make it. Even if we can't it will give me some much needed exercise.

In any case, here are a few photos that I have taken over the last week. This week's mantra is: "Two more weeks."

Beginning of Week 16.

Kaylee and our 5 year old pitbull Ronan.

I can sit all by myself now!

Yep. I rode the carrot train!

Hanging in my Exersaucer!

Week 15 - Four Weeks to Go

Well, these last two weeks went swimmingly. Other than the fact that Kaylee refuses to keep her NAM in at all, we have done well. To be fair, she has her NAM in all day and night. She randomly pulls it out because she can when she thinks about it. When she is playing or eating or sleeping she is not thinking about it and we have no issue, as soon as she remembers that her NAM is in, well there it pops out. I can tell now by her sounds alone when she has removed it...like right now for example. I put her down for her afternoon nap and guess what - NAM is out. Be right back...


Well, now that that is taken care of, today we are told to keep up with the double stretching on her to move the last millimeter along. Wewt. We also saw her boyfriend today. His name is David. He is six months old and has a bilateral cleft lip and palate. He is adorable. Anyway, that is pretty much all I have to report other than she rolled over from front to back finally.

Yeah, that is about it. So, here you are....cuteness.

Kaylee and her Boyfriend David. <3

Yay! I am ready for a new week!

Week 14 - A Little Bit of Heartache.

Well, I've had a week. Kaylee has been perfectly fine. Other than one day of ouchie due to a diaper rash, she's been great. She is getting so big, and so vocal. It really is adorable. It is actually really hard to believe that she will be five months old very shortly. I can't believe how much being a mom has changed me, and my life.

However, this week I became distraught and I thought I would tell all of you why.

I was sent a comment on this blog (which I have to approve/deny) which I deleted because of it's very sensitive nature. I was sent an anonymous comment which had a picture of a deceased infant. Underneath that picture was a comment: "Be glad this isn't you. Quit complaining."

For the record, I am completely thankful that my daughter is alive and I feel for any mother who has lost a child, I cannot imagine anything more horrible.

That being said, I don't feel as though I "complain" about my daughter. I am merely expressing my feelings about our own situation, which is unique enough to warrant discussion. So, I will continue to do what I do for my daughter's sake. This is a blog more for her than anything else, and for others who find themselves faced with the challenge of having a cleft affected baby. To help those who read this to understand what I have gone through I offer this:

c1987 by Emily Perl Kingsley. All rights reserved


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.

You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and
Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Here you can find the original poem/story -Welcome to Holland.

And to end our day or start our morning depending on where you are at in the world:

Kaylee Monster in the Ocean Swing of Doom.

Week 14 - A Week Off.

Not off of her NAM, but off of having to drive 110+ miles to see Dr. H. I don't mind the drive, but I got to save some gas this week and that is a good thing. Dr. H gave us the week off because she thinks that things are going that well. So, we are glad about that. She says that Dr. A (our surgeon) is going to love working on Kaylee because of how "well" I have been taping her.

That was probably one of the nicest compliments I have gotten. Strange.

Anyway, five weeks and counting until lip repair surgery. I will be taking my laptop with me and using the internet at Children's to post pictures. It will be almost streaming. LOL. What else will I be able to do while my daughter is in surgery? At least this will keep my mind occupied for a while.

Anyway, nothing new to report over here. Just that Kaylee and Ronan the Destroyer(our dog) have come to an agreement regarding the floor space. Ronan has agreed to rent it to Kaylee at the price of a daily face lick and three Beggin' Strips. They are adorable together. They really are.

Well, Princess Wigglebottom has come up from her nap. So I must attend to a probable poopy diaper and a hungry infant. Until next time,
JESS

Week 13 - A Revelation.

Not a big revelation by any means, but a revelation none-the-less.

Kaylee has no uvula. A bit strange, I know. And for those who do not know...the uvula is the hangy thing at the back of your throat. The first thing I thought of when I saw this was, "at least she can't get it pierced!" and yes, they can indeed, pierce the hangy thing in the back of your throat. I was going to get it done once but chickened out and got my tongue pierced instead. :)

Anyway, that was just something I wanted to bring up, because I decided to do some research on the subject of a missing uvula and what that might mean for her in the future. And I found this happy tid-bit from the most reliable source on the interwebs - wikipedia! The research is backed up by the many medical journals that are listed on the sidebar of this blog :)

"When cleft palate occurs, the uvula is usually split. It occurs due to the failure of fusion of the lateral palatine processes, the nasal septum, and/or the median palatine processes (formation of the secondary palate)."

I just thought it was interesting. I had read it before during my initial research about this, however I never really looked at the back of Kaylee's throat to check. So, yeah. That was my revelation for the day.

Enjoy the barrel of happy that is my Kaylee!

Even moar nekkid Kaylee! My pickle is too cute!

Week 13 - Of Snow and Other Things.

Colorado is such a lovely place. The un-official state saying is "if you don't like the weather, wait 5 minutes it will change." It is so true. Last week, we had highs near 70 - near 70 in Northern Colorado. This week, snow, and subzero temperatures. Fun times.

So, her Week 13 appointment was supposed to be on Tuesday of this week (1/31) however, because it was below zero and we do not have a garage or carport, our car froze and would not turn on, period. There was no click over, anything. It just wouldn't do it. So, we rescheduled her appointment for Thursday (2/2). My thinking was this: "forecast calls for 32 degrees, and cloudy." I forgot to check the forecast before I left and instead the weather was 32 degrees and holy crap snow! And lots of it. It snowed like crazy in Denver. It took us two whole hours to get home. We ended up borrowing Kaylee's Grandma Thomas' car because the heater in ours kinda blows - cold air that is.

Anyway, we are at the point in her NAM treatment that we no longer need to see Dr. H every week, and will now be going every two weeks until the week before her surgery. Eeeek. No more weekly trips to Denver? I think I might just be bored without that trip. As I said, she no longer needs to go once a week. She is doing so well, and Dr. A her surgeon really is liking the taping that I have been doing. He likes how in just two weeks the nose piece has really rounded out her nostril . I have yet to get a good picture of that, but that's ok.

I am getting fairly excited about the upcoming surgery. Of course, scared, but excited. I can't wait to see what her new smile is going to look like. I can't wait to see how she does feeding with an actual lip. She still will not be able to suck on anything, like make the sucking motion or whatever, but she will be able to make a seal around things with her mouth. We might be able to start teaching her how to drink out of a sippy cup that doesn't require suction (if there is such a thing).

Well, I suppose that is really all today. It snowed, Hurray! We took the slow road home, and we are that much closer to surgery number one. To end the day, almost nekkid Kaylee cuteness!

With Grandma Molina - nekkid Kaylee. Don't you just love the chubby rolls? 

I do