Wednesday, January 30, 2008

Mason had his second dentist appointment

Last Monday, Mason went for his second teeth cleaning. He was a little apprehensive, but we got through it. They said his teeth looked great. At his first visit, they had been a little concerned that he didn't have enough over an overbite, but they said it looked fine now and that it seemed to be getting better. They also commented on the spacing between his teeth, saying that the spaces between his teeth are actually good for when his adult teeth come in, as they will have plenty of room. No cavities either!

Okay Honey

I guess the word "honey" is a common term of endearment in our house. Lately, Mason has picked up on the use of that word by calling me "honey". It is too cute. Tonight I got home late because I had a hair cut and my conversation with Mason went something like this ...

Mason: Hi Mommy! I missed you when you got your hair cut.
Me: Hi baby ... I missed you too!
Mason: I like you hair honey.
Me: (giggling) Why thank you honey.

There are so many more instances where he has used the term "honey" with me as a term of endearment, I just keep forgetting to blog about it! :)

Don't let the bed bugs bite

For as long as I can remember, Mason and I have had a routine at bedtime when I put him to bed. That routine consists of us saying ...

Me: Night night
Mason: Night night
Me: Sleep tight
Mason: Sleep tight
Me: Don't let the bed bugs bite
Mason: Okay
Me: See you in the morning
Mason: Morning

So right now I'm sitting here in bed with Mason laying next to me in my bed (that is another story). He has his sheriff car from the movie Cars and he is whispering ...

Night night
Sleep tight
Don't let the bed bugs bite

I asked him who he was talking to and he said Sheriff. So cute.

Tuesday, January 29, 2008

Surgery Update

I just got Payton's T&A rescheduled to have it done at the hospital on February 22. Although we can't have our normal ENT do the surgery, I feel much better knowing that it will be at the hospital and she will be monitored more closely. I talked with another mom who had the ENT that will do Payton's surgery and she said she was fabulous. What a relief!

Sunday, January 27, 2008

Family Pictures

While we were in Wisconsin visiting
Kyle's family over Christmas, we had these pictures taken ...

The fam ...

The extended fam ...

The kids with their cousin Ethan ...

Friday, January 25, 2008

Mason ... naughty at daycare?

So ... I'm not sure how I feel about all of this, but here goes ...

We have historically been told that Mason is one of the more well behaved kids at his daycare. We recently got a new acting principal while ours in on maternity leave and it seems some things have changed.

Yesterday when Kyle went to pick the kids up, he was informed that Mason was a very naughty little boy and that he was written up twice. LOL. They write up four year olds? Seriously. Incident number one involved Mason not following the teacher's directions and incident number two involved him supposedly hitting another child for no reason during storytime. Really? Doesn't really sound like my kid.

I have had a lot of issues with the teachers at daycare. They are uneducated, young and mostly there because they need a paycheck, not because they love or want to teach children. The other day I witnessed one child getting yelled at to sit down as he cried from an injury to his hand. Really? You bet I said something about that. I can just imagine what goes on when the parents aren't watching.

So this morning Mason cried when Kyle dropped him off at daycare, which he NEVER does. Someone please tell me why and what happened before I go into daycare and start demanding to know exactly what is going on!

Test Results

Our pediatrician just called regarding the AAI x-rays we had taken on Payton the other day. Everything looked normal, so that is great news.

Regarding her upcoming T&A, I'm trying to get it switched to have the surgery done in the hospital. I've learned that kids with DS have a tendency to have bad swelling and perhaps bleeding. The swelling could make her throat swell shut and cause her to be unable to breathe. Yikes. So I'm pushing for an overnight stay for her surgery.

I also forgot to mention the other day that the ENT could not locate the tube in Payton's right ear, so it may have fallen out already, in less than a year. Ugh. So he is going to look when she is knocked out for surgery and if it is missing, then he will replace it.

Wednesday, January 23, 2008

Love and Hate MEME

Ok, so I've been tagged by Renee over at Life with My Special K's and Stephanie over at Megan's Got 47 to play Love and Hate MEME ... so here goes ...

My loves include:

My husband.
My children.
My friends and family.
My connection with the Down syndrome community.
Working on making my business a successful one.

My hates include:

Discrimination against my daughter and others with Down syndrome.
Health problems.
Worrying about Payton's future.
Naughty, mean kids.
That I don't have any time to do anything.
That I can't go save all those babies with DS that are dying internationally in institutions.

I tag ...

Melanie over at Baeten Family

Shay over at Karl's Kraziness

Alyssa over at What's Happenin' at the Hoovers

Sign us up for surgery

We saw Payton's ENT today and we are officially scheduled for a tonsillectomy and adenoidectomy (aka: T&A) on 2/28/08. It will be done on an outpatient basis since she does not have any heart issues, otherwise it would have been done in the hospital. In addition to helping her sleep apnea, we are hoping the adenoidectomy will help with her persistent runny nose.

During a T&A, the doctor hyper-extends the neck. This is a problem with kids with Down syndrome, due to their risk of having instability in their atlanto-axial joint in their neck. Typically, an x-ray is taken at 2-3 years of age to see if they have the instability. I wanted Payton's x-rays done prior to her surgery, just so we know what we are dealing with. Her geneticist also wanted it done now for general reasons, because she is so active. If she has the instability, that means she cannot be put in a position that would hyper-extend her neck (i.e. somersaults, wrestling with her brother, etc). Yikes ... we may have a problem there.

Long story short, her ENT gave us the script for the x-ray and we went and had that done today too. Try telling a two year old to stand still, arms down and at a 90 degree angle with the wall ... right. Then try telling a two year old to do that, but to tilt their head down, and then back. We managed to get a few shots so hopefully the radiologist will be able to tell is she has AAI. I pray that she does not.

Sunday, January 20, 2008

My husband ... Payton's hair ... chicken nuggets

Yesterday Kyle had the kids all day by himself. Not a big deal, he is a great daddy. The one problem with him having the kids by himself is that Payton doesn't get her hair done. Now anyone that knows us knows that I usually require that Payton have her hair done cute. :) However, when it is just daddy, she gets a barrette that she pulls out and then her hair falls in her face all day. He claims he just can't put her hair in a ponytail and I don't understand what is so hard about it. So we have planned to have "hair boot camp", but that just hasn't happened yet.

So yesterday while I was gone, I got a text message that said, "I did my first ponytail and she loves it." LOL Apparently it didn't last long because he didn't do it tight enough, but hey, it is a start!

Anyone who knows us also knows that Payton has quite the eating habit, or lack thereof. :( She is still on baby jar food mixed with oatmeal for a large portion of her diet, since the only people food she will eat is pizza, yogurt, chips and crackers. I don't think she can live on pizza, so she still gets the baby jar food. Daycare told Kyle the other day that Payton ate two chicken nuggets there, which we have never been able to get her to do. So he tried giving her some yesterday, after I had been working with her on using her fork and stabbing food a few days ago. Well, she ate the chicken nugget ... in fact, she ate six of them all by herself, using her fork and everything! Apparently she wanted to wait until she was two years old to show us how big of a girl she is.

Yay sweet girl ... we have been waiting so long for this!! Oh, and we just fed her dinner tonight and she ate another six nuggets! Wahoo (as Mason would say)!

Here is a video of her eating her nuggets yesterday that Kyle took from his cell phone (I'm not sure why the sound isn't loading) ...

Wednesday, January 16, 2008

A little about the Mama

Yesterday I had an outpatient procedure to collapse a vein in my right leg. I have bad valves in both my legs, but my right leg is worse and has caused vericose veins from my groin to under my knee. Ish. So yesterday they used a laser to collapse the vein by heat sealing it. Sounds fun, eh? They only use local anesthesia in the vein and all those pricks along the vein were the worst. I couldn't feel anything else since it was numb. Today I'm hobbling around with an ace bandage wrapped all up my leg and it feels like someone is playing tug of war with that large vein in my inner thigh. I will go back in a couple weeks to have the smaller vericose veins pulled if shutting down this large vein doesn't help them to decrease in size. Man, I feel like an old woman!

No, No and No

Payton's favorite word the past few days has been ... um, "NO!" No matter what you say to her, the response you get is, "NO!" She tells her brother "NO!" ... tells me "NO!" ... and tells her father "NO!" I can only imagine what daycare thinks at this point. Even though she is being sassy, I could care less because I'm just happy she is communicating ... and it is pretty cute that she is being so sassy!

The Wii

I got the boys a Wii for Christmas and Mason is officially addicted. He goes to bed asking if he can play just one more game and wakes up asking to play. Cars has been the game of choice thus far and yes, he can beat me. Maybe I should also admit that I am addicted to and he and I fight over whose turn it is to play. LOL Maybe I should have bought it for myself and hid it in my bedroom. It definitely has been a great investment ... I'm not sure that he has played with any of his other Christmas toys yet.

Sunday, January 13, 2008

Birthday Party

Today we had one big birthday party for the kids ... Payton turned two on 1/7/06 and Mason turns 4 today. We hired a party company to come into the house and throw a safari party ... it was fun, but very choatic!

Mason and his lion mask that he colored ...

Payton looking pretty excited to be wearing her safari hat!

Mason blowing out his candles ...

Payton admiring her candles ...

Friday, January 11, 2008

More info on the sleep study ...

So I found out that Payton's sleep study was evaluated and written up on 12/3/07. Over a month later I got the results. GRR. Here is the final outcome ...

Moderate obstructive sleep apnea syndrome, with mild sleep fragmentation, but without significant hypoxemia or carbon dioxide retention. Evaluation for upper airway obstruction is recommended. A repeat polysomnogram is recommended 3 months after surgery to determine if further therapy is required.

The sleep study ran for about eight hours and during that time, she woke up 17 times. We have an appointment to see our ENT this coming Wednesday and we will be scheduling surgery for a T&A from there.

Thursday, January 10, 2008

Sleep Study Results

I am so angry! Payton had her sleep study done in the end of October 2007. It has been about 10 weeks or so and we still had not received her sleep study results. So I have been calling and calling and calling ... her ENT, her pediatrician, the sleep lab ... and nobody has called me back. Finally today I got her ped on the phone and they tell me it is not their responsibility to call me because they did not order the sleep study. Ok, nobody ordered it. I didn't need a referral ... we did it on our own, but the results were to be sent to our ENT. Regardless, the ped tells me they got their copy from the ENT, who never called me but took the time to send a copy to our ped. GRR. What about the patient?!

Bottom line is Payton has moderate sleep apnea. I know nothing other than that. I have left a message for the ENT to see what we do from here. I found this online ...

Moderate to severe Sleep Apnea is usually treated with a C-PAP (continous positive airway pressure). C-PAP is a machine that blows air into your nose via a nose mask, keeping the airway open and unobstructed. For more severe apnea, there is a Bi-level (Bi-PAP) machine. The Bi-level machine is different in that it blows air at two different pressures. When a person inhales, the pressure is higher and in exhaling, the pressure is lower. Your sleep doctor will "prescribe" your pressure and a home healthcare company will set it up and provide training in its use and maintenance.

Monday, January 7, 2008

Our Support System

Today I posted birthday wishes to my baby girl on an online support group that I frequent along with a picture of her as a baby. I wanted to post some of the comments from some of our friends just to show what an amazing ride we are having and how we have also made a difference, which means so much to me.

From our friend Diane ... Okay, explain to me why I welled up with tears when I saw her little bitty picture. WOW! You know I remember that little bitty girl when she was that little bitty baby! Girl, give her the biggest happy birthday hug from me. Then give her the next biggest one from Maryellen. Of course I am being selfish! I love that girl. Then give your self a hug from Maryellen and me. Cuz I have loved journeying through this journey with you. You bless me, ya know that!!! Love, Di

From our friend Honny ... Oh Happy Day, sweet Girl!!!! I just b-day is the 9th and I was having a pity party for myself last year little guy was only 4 months old...fresh out the shock box...and I remember RED ICING and the cutest little girl turning 1 and I was's cute and life seemed so normal for you guys.....and damn...if it wasn't that way for me this year.... so, Payton's b-day is HUGE for me....major turning point....just wanted you to know that ...SO, HAPPY DAY...woo-hooo!

From our friend Ibby ... Sweet Payton, We hope your birthday was just as wonderful as you are!! I remember looking at your sweet face when I first came to Downsyn. You are one of the ones I felt so drawn to and your beautiful face gave me such hope for my baby's future. I'm so glad we had the opportunity to meet you and snuggle a bit! You are too precious for words!! Love, Ibby & AJ

Happy 2nd Birthday Baby Girl

Payton at 8 weeks old

Today is Payton's second birthday. Wow, this day brings a whole lot of emotions back to the surface. Two years ago, we learned that our precious baby girl was born with a little something extra ... Down syndrome. We were blown away ... we wanted to know how this happened to us ... we weren't sure how this was going to change our lives.

Today, I can answer those questions for myself, and others who might be interested. Why did this happen to us? I'm not sure why God chose Kyle and I to be Payton's parents, but we could not be more honored. Many people say, "God doesn't give you more than you can handle." I believe that is true. Sure, I wasn't so sure in the very early days, but we got through it and are now stronger than ever.

How has having Payton in our lives changed us? Only for the better, that is for sure. She has taught us so many things. While the majority of society thinks she is far from perfect, we happen to think that she is perfect. We would not change one chromosome in her little body. Her spirit for life makes you realize that many of those other things that people dwell on just do not matter.


To my baby girl ... I can't believe you are two already. You have accomplished so much in these two short years and we could not be more proud. You make my heart swell with joy in a way that I never thought was possible. I love your laugh, your smile, your sassy attitude. I love watching you walk across the floor while your big buddha belly gives you a bit of a waddle. I love watching you hold your own when your brother tries to take your toys. I love watching your expression when you see us and how you run to give us a hug. I love how you stop in the midst of your day just to give us kisses. We are just in the beginning of our journey and I can't wait for what is to come. Love you sweetie ... Happy Birthday! Love, Mommy