Way overdue for an update

Life has definitely gotten away from me these past couple of months and I seem to be falling behind on everything. Work has been insanely busy, not to mention the usual running of errands, visiting friends/family, and our fun trip out to CA for the NDSC convention and Disneyland. I've got a TON of pictures to post and updates about school, I hope to start on it soon. Karli is now in the afternoon PPCD program (that's a whole post in itself), so I have a few more free minutes in the evenings since she's going to bed even earlier now.

Wordless Wednesday {my water loving girl}

Cute story

This morning as Karli was watching "Handy Manny" for a few minutes before we left for daycare/work I heard one of the characters on the show say something about his new carwash being broken to which Karli replied, "It's o.k., we can fix it!" :)

4th of July

We had a fun 4th of July this year. We had Friday the 3rd off of work so we went to visit my parents. Karli and my niece Maddie had the best time playing in their little pool.
Kisses!


Playing in the pool


Saturday the 4th we spent in my husband's hometown. Everyone goes to my husband's Grandma's house and we sit in her yard to watch the parade every year. Karli has the best time waving at the people on the floats and going to pick up the candy that they throw.









Karli even stayed awake this year to watch the fireworks and actually liked them! I was afraid she would be scared of them and wouldn't enjoy it. We could tell it made her nervous since she clung to her daddy for dear life, but she was laughing and pointing at them at the same time.

Sea World weekend

Grandma and Grandpa Ulcak gave Karli (and us) season passes to Sea World for her birthday. The gift also included an all expense paid trip for the first time we went. We had a great time even though it was about 103 degrees! Gotta love TX summers.

When we got in Friday night we were able to meet up with some friends of ours for dinner. We got to finally meet Miss Reese who came home from Ukraine just a few months ago! We had a wonderful dinner with McKenna, DJ, Darah, Connor, and Reese. The kids all were wonderful in the restaurant. It was way too short of a visit as usual.

The Mom's

Karli about to run off (again!)

Giving Reese a big hug


We got up early Saturday morning and headed over to Sea World for the day. We basically hopped from show to show so we could keep Karli out of the direct sun as much as possible. Early in the day we took her to feed the dolphins. She LOVED this.


Then we headed over to see Shamu. I've been to Sea World several times, but I'm still amazed at the whales and what they're able to do. The show was wonderful as always.






Karli loved seeing all the animals and had a great time. We're looking forward to our next trip, but we're waiting for it to cool off a bit!

Long weekend

It has been a long weekend and strangely enough, I'm ready for work tomorrow! Randon had his wisdom teeth out on Friday so I've been taking care of him and Karli all weekend. He's doing really well thank goodness. He's in pain of course, but he got up and moved around today and helped me some which was nice. He's not bruised and isn't swollen either which is amazing.

I'd really love someone to help me get the memo to Karli that on Saturday & Sunday she doesn't need to be up at 6am. Seriously.....that's TOO early on the weekend. Granted I get up at about 5:15 during the week so it's not like I'm not used to getting up early, but come on, it's the weekend! She's so funny when she gets up, I can't get mad at her. We typically hear "psssst, psssst. anybody home?","hey daddy...hey mommy.......hey.......hello??", or "i can eat" (that's how she tells us she's hungry) over the monitor.

We never even got dressed yesterday which was nice. I didn't even go get the mail because that would have involved putting real clothes on. Karli & I played all day in between me taking ice packs to Randon or making him soft foods to eat. Poor Karli didn't understand why daddy wasn't able to play with her.

This morning when I was getting Karli dressed, she insisted on wearing her Snow White dress from Halloween, her princess shoes, and her Cinderella crown. I think she's going to be pretty excited when we tell her she's going to get to meet the princesses don't you? We're going to go to Disneyland for a couple of days after the NDSC conference. I can't wait to see her face! It's going to be worth every penny! This picture is from Halloween, I didn't take one today, but I should have.

Another Cpap update

A little background: Karli is spoiled (majorly). Out of guilt from me working full time or whatever it may be, we've always sat and held Karli while watching tv until she falls asleep and then laid her down in bed. Because we would be watching our shows and not anything she wanted to watch, she would fall asleep pretty quickly with no problems and then we'd lay her down in her bed.

There is no way we could figure out how to continue this while trying to get her to wear the Cpap, so we've been taking our portable DVD player into her room and letting her watch a movie until she falls asleep.

Since we really got her started on this about a month ago, she's had good nights and bad nights. The good news is that she actually asks to wear her "Elephant Mask" and watch a movie. So we have no problems getting her to put it on. An average night is that she'll wear it for a couple of hours and then take it off and climb into bed after refusing to put it back on. On a good night (like tonight....well so far anyway) she falls asleep after about 20 minutes and will get a good couple of hours in. An example of a bad night (at least I call it that), she wore the mask, but stayed up to watch 1 1/2 movies. I finally had to just take it off of her and let her go to sleep because she's getting less sleep now than before we started this. She was really wanting to watch the movie and didn't want to go to sleep.

Her best night was when Randon was out of town on a Thursday night and I really wanted to watch "Grey's Anatomy" (it was the night Alex & Izzie got married). I brought the machine into our room and set her up in our bed so I could watch tv. She was asleep by 7:15 and slept with the machine on until 11:45. When she's asleep with it on, she doesn't move AT ALL. So I know she's sleeping well.

So, our dilemma is this. Do we put a tv in her room? It would only be for the purposes of the Cpap. What I'm hoping happens is if we do put it in there, that she'll fall asleep consistently every night with the machine on and then we can gradually phase the tv out. We want to get to where she puts the machine on and goes to sleep without needing the tv and we can then take the tv out of her room completely.

I'm so proud of her for doing as well as she is with it but at the same time I wish we could be making more progress more quickly. She's been asleep almost an hour with it on now, hopefully she'll stay asleep for a while longer before she's through with it for the night!

The rest of the photoshoot!!

Jenna released the rest of our photos yesterday! I love them all and don't know how I'm going to narrow them down, I'm going to go broke for sure!

www.fzphotography.com/show/ulcakfamily09/

4 year checkup and Cpap update

Daddy took Karli for her 4 year checkup today.  She's 36 lbs. and 38 inches!  Everything else was good, but she was not cooperative at all for Daddy.  In fact, she's been pretty grouchy and defiant this week.  They did a urinalysis as part of her well visit and it turns out she has a bad UTI.  We had NO idea.  I feel like such a bad mommy!  Now I know why she's been so grouchy!  Poor baby.  We got an antibiotic so hopefully it will clear this up quickly for her.  Thank goodness for her checkup today or who knows how bad it could have gotten before we knew what was going on.  

On a much brighter note, as I type this Karli is asleep in her room and is wearing her Cpap!!!!!!  I'm trying not to get too excited too fast, but I can't help it!  I'm SOOOO excited!  

Photo shoot with Jenna

We had the wonderful gift of having a photo shoot with Jenna of Fickle Zeal Photography a couple of weekends ago. Jenna is a wonderfully talented photographer! I met Jenna a few years ago on Downsyn because of our beautiful girls. Miss Lana is about a week older than Karli! Jenna literally chased after Karli the whole time we were doing the shoot, she must have been exhausted when we were done. She's amazing and was so sweet to give us a sneak peak of the results. Go here to see them:

www.fzphotography.com/blog/

They are so beautiful and I can't wait to see the rest of them! Thank you SO much Jenna!!!

Happy Birthday Karli!!

Happy Birthday to my beautiful, sweet, loving, stubborn, lively, fiesty, adorable, movie-loving, strong-willed, smart, sweet baby girl!!! Mommy & Daddy love you VERY much and are so blessed to have you in our lives! I can't believe you're 4!

Cpap progress

We're finally making some progress with the Cpap!  Karli & I went to the sleep lab at TX Children's last Friday for de-sensitization therapy.  It was tough, but after much bribing (haha) she finally wore the mask and let us turn the machine on.  The lab tech even took us to the gift shop and bought her a prize when we were done.  

Since Karli LOVES to watch movies, that's the only way we can get her to wear the mask.  So we've been taking the portable DVD player into her room at night.  Friday night she had the mask on for about an hour before she was done with it and wouldn't put it back on.  We didn't do anything Saturday because it was the day of her birthday party and she crashed before we could get anything set up.  Sunday she only kept it on about 20 minutes, but she laid her head on the pillow a couple of times for about 30 seconds so that was progress.  (She still hasn't actually slept with it on)  Last night was our best night by far with regard to how long she wore it (over 2 hours!), but she just couldn't/wouldn't settle down and close her eyes.  Finally about 11:00 I gave up and took it off so she could get some sleep.  I'm hoping after another night or two she'll get more relaxed with it on so that she can actually sleep with it.  Especially since that's the whole point of all of this, lol.  

I am very pleased though with her progress.  I'm hoping this is a good sign that we're on our way to her eventually sleeping all night with it and finally getting a good night's sleep!  

Karli's Birthday Party

We had Karli's birthday party yesterday.  Lots of fun, friends, food, and great presents for Miss Princess.  Her 4th birthday is this Wednesday and I still can't believe she's going to be 4.  She didn't have a nap yesterday, so that was hard, but despite being overtired she did well.  She makes me so proud when she says "please" or "thank you" without me prompting her.  

She blew out her candle all by herself!  And on the first try!  This was the first year she was able to do it.  She came really close last year, but I had to help her.  It was an exciting moment for sure.  Here are a few pictures from her party:

Modeling one of her presents

It's been a long week

Poor Karli has been sick for an entire week now.  It started last Thursday when I got a phone call from school to come pick her up that she was vomiting.  All this 1 hour before Randon & I were supposed to be there for her IEP meeting.  We frantically call our neighbor to see if she can watch Karli, but no luck.  So I pick her up, take her home to Randon and go to the IEP by myself.  Luckily she has a good team and I feel good about where she is and what the plan is for the next year. 

She vomited off and on for most of Thursday.  We were able to "borrow" some Zofran (with the o.k. from the ped.) that my sister had for my niece.  That did the trick and Karli started being able to keep down water.  Friday she was keeping food down and we thought all was well.  She wasn't 100% over the weekend, but was o.k.  I just figured she was slowly getting back to her normal amounts of food/water.  We even went to an Easter egg hunt/party on Sunday.  

Well, Monday morning comes and she starts gagging before we leave for daycare.  She'd coughed all night off and on so I figured she needed to clear out mucus that had settled.  This isn't that unusual for her.  So, off to daycare we go.  We pull in the parking spot and I put the car in park and she vomits.  Fun times.  So I make sure she's o.k. and put the car back in drive to go straight back home.  We go to the dr. and get our own prescription for Zofran and one dose does the trick again.  She hasn't vomited since then thank goodness.  (I just realized I should have put a grossness warning on this....sorry!)  Overnight Monday/Tuesday is when her fever started.  She went from none to 102 in no time it seemed.  Tylenol would take it down, but it would come right back up.  

I've been EXTREMELY busy at work lately and really stressed , so since I'd already had to take off 2 days, Randon stayed home with her Tuesday morning so I could at least go to work for a little while.  I come home and she's sitting eating a snack.  I look at her feet and notice they have a blue tint to them and they're really cold.  I put socks on her and take her to go cuddle on the couch under a blanket so I can warm her up.  That seems to work and she ends up taking a good long nap.  When she wakes up her fever spikes again and about 30 minutes later I see that her hands and feet are all blue-ish and she's really mottled all over.  She kept crying and saying "Owie Mommy", but couldn't/wouldn't tell me what hurt.  I started worrying, especially since by this point it's after 5 and we'd have to wait until tomorrow to go to the dr.  Luckily our ped has an e-mail address that she checks often so I e-mailed her to let her know what was going on.  

She wrote me back and said to go ahead and take her to the ER to get her checked out.  We packed up and got to the ER at 7:30 Tuesday night.  It was packed and after all was said and done we finally ended up seeing the doctor at 5 am the next day.  She was burning up when we got there because she was just coming due for another dose of Tylenol/Motrin.  I didn't grab it before we left, and it was a good 5 hours before we could get anyone to give her any.  By the time anyone looked at her, her hands and feet were back to a pretty pink.  I was glad but then at that point felt stupid for taking her in.  When we finally saw the dr. she said that she wanted to go ahead and give her some IV fluids to beef her up.  She'd been drinking, but not enough.  While she was at it, she also did some bloodwork to check for any infection.  

Poor baby was so tired she slept through the IV.  The dr. came back in when it was done and said that the bloodwork showed no infection and that it was just a really bad virus.  I hate that word!  She sent us on our way saying there wasn't anything we could do, just make sure she drinks enough and that it could last another 5 days.  Great.  

Luckily since yesterday her fever's stayed down, but now her voice is almost gone.  She's so tired of not feeling well and is getting stir crazy (when she has energy) and other times just whines and cries.  I want her to feel better soon, I feel so bad that I can't make it go away!  She's already missed a week of school/daycare.  Hopefully she'll feel o.k. enough to go to church on Sunday and celebrate Easter.  She's been looking forward to the Easter bunny coming to see her!  

Oh my goodness.....

I don't know what I'm going to do with my daughter.....I've got a mini-teenager on my hands! This morning before we left for school/work, Karli went into our bedroom and got the cordless phone. I told her to put it down that it wasn't a toy and she looked at me, put her hands on her hips and said "Come on Shylo!" in a VERY sassy little voice. OMGoodness!!

It's obvious that she's learned this from her daddy because when I look at her and ask her what my name is she says "Mommy" or "Momma".

What am I going to do with her?? :) She's definitely living up to her title of Princess!!

Spread the Word to End the Word

SPREAD THE WORD TO END THE WORD

A personal message from John C. McGinley

Hi, I’m John C. McGinley. I’m an ambassador for the National Down Syndrome Society, and today I’m teaming up with Special Olympics to bring you a message that’s important to me.


John C. McGinley and his son, Max
So many times in life you are asked to change…

Change your clothes. Change lanes. Change jobs. Change the sheets. Change flights. Change your tune. Change horses midstream. Change your latitudes and your attitudes!

Change, and the ability to adapt, is to the human condition as air is to the lungs. We change, and in the doing, we thrive!

In fact, we just elected a president who promised, above all else, to “change.”

What if, on March 31, you elected to change the way you use the words “retard” and “retarded”?

Hardly seems like the largest of sacrifices. Not when you consider the changes in language that you have, so willingly, already elected to integrate into your vernacular. You no longer use the words nigger, or kike, or faggot, or jap, or kraut, or mick, or wop.

Why would you? Why on earth would you? Those are all words that hurt. Those are all racial and ethnic slurs and epithets that perpetuate negative stigmas. They are painful! And that is not okay. It is wrong to pain people with your language. Especially, when you have already been made aware of your oral transgression’s impact.

Make no mistake about it: WORDS DO HURT! And when you pepper your speak with “retard” and “retarded,” you are spreading hurt. So stop it. Stop saying “retard” and “retarded.” Those words suck! You are better than that and you definitely do not need to be “that guy.”

There is no longer any acceptable occasion to lace your dialogue with the words “retard” and “retarded.” Without fail, those words are the stuff of hurt. They, straight up, are. So, stop it! Stop using the “R-word.”

The 7 million people with intellectual disabilities (around the planet) who are on the receiving end of this hate speak are genetically designed to love unconditionally. These “retards” are NEVER going to return your vitriol. Ever! So what could possibly be the up-side of continuing to use the “R-word” in your daily discourse?

We love you. We do!

And, just in case you missed it and you need an extra hug? We love you!

You do not need to love us in any kind of reciprocal fashion. You don’t. (It’s not that kind of bargain.)

But, how about on March 31, you elect to change? A word? Two stinkin’ syllables?

On March 31, join us and “Spread the Word to End the Word.” And the word is “retard!” It HURTS! So help us to cut it out.

Thank you! We do love you!
John C. McGinley

I received this in an e-mail and wanted to share it. This is a wonderful letter that packs a VERY important message. Even if one person changes because of this letter or any effort to educate the pain that that word causes then it's all worth it.

Happy World Down Syndrome Day!

In honor of World Down Syndrome Day, here are 21 things about my wonderful, amazing princess. 

1. Karli was born on April 29, 2005, exactly 11 years to the day from when Randon & I met. 
   
2. Karli had OHS on August 30, 2005 at 4 months and 1 day old. She was in the hospital for 11 days total and has done amazingly well since then. 
   
3. Karli was born a little over 2 weeks early. We found out she had DS about an hour after she was born.  
   
4. Karli is the first grandchild on both sides of our family and has been spoiled accordingly. 
   
5. Karli attends daycare and PPCD (preschool program for children with disabilities). She loves going to school and playing with her friends.
   
6. Karli has the most contagious laugh and the most beautiful smile.
7. Karli is and always has been very social. She never meets a stranger anywhere we go. 
   
8. Karli is very, very stubborn. If she doesn't want to do something, she's not going to do it! 
9. Karli is doing really well with her ABC's, she gets them right almost all of the time.
   
10. Karli's middle name is Leanne. She's named after Randon's sister who passed away.
    
11. Karli loves movies! She could watch them all day if we let her. 
    
12. Karli loves music and books too. She especially loves singing along to Signing Time!
    
13. Karli loves her family, and they all love her back so much. 
    
14. Karli loves animals. Her daycare had a petting zoo yesterday and her teachers said they had to pry her away from the animals. Apparently she hugged a Llama, and sat and talked to the baby sheep for a while! 
    
15. Karli loves to feed the cows at Grandma and Grandpa's house. She even will hand feed cubes to the huge Bull!
    
16. Karli has two animals that she's very attached to. One is "Cow" which is a pink & white stuffed cow that goes everywhere with her. The other is a little stuffed Piglet. Our friends Steven, Kimberly, & Joel got it for her and even replaced it when she lost the first one. Karli loves her "Pliget" as she calls it. 
    
17. Karli loves to be outside, whether it's playing at the playground or just running.
    
18. Karli loves to help her Grammie make cookies.
    
19. Karli has sleep apnea and we are still trying to get her to wear the Cpap mask. One day it will happen.....
    
20. Karli currently has her 4th set of ear tubes in. We're hoping and praying these are her last.
    
21. Karli has taught us so much since she was born. We love her with every ounce of our being and are so thankful to have her for a daughter.
    

A little brag on my girl

I was so proud of her this weekend. We were doing alphabet flash cards and she got her letters correct about 90% of the time! And she can correctly recognize her numbers about the same. She tends to get them wrong when she's not fully paying attention or gets in a hurry, but overall she's doing so good with this and I'm so proud of her!

Something that hits very close to home

Wordless Wednesday {my tractor loving girl}

Happy Birthday to my husband!

Today is Randon's birthday! Karli was so sweet this morning, she sang "Happy Birthday" to her daddy. She leaves off the "Happy" a lot, but does a really great job! We're going to go to dinner tonight to celebrate, so that will be fun. Happy Birthday to a great husband and Daddy!

My ballerina princess

This morning before school

Karli: Mommy, owie foot. Kiss it. {sticks foot in my face}

Me: {kisses said foot}

Karli: Daddy, kiss it. {sticks foot in Randon’s face}

Randon: {kisses said foot}

Karli: All better!

Ok, this is getting frustrating

When I type these posts, I put them into paragraphs so they're easier to read. Then when I hit "Publish Post" it comes out as one big paragraph. In the preview screen it looks correct. All you blog experts, what am I doing wrong?

If the apnea itself isn't enough......

Now I'm pretty sure that she's sleepwalking. She very well could have been doing this for a while now and we just didn't know. It's hard to say. Background: She sleeps in a toddler bed at home in her own room and we have a baby gate at the door. When we got the gate sleepwalking wasn't on our minds, it was a safety thing to make sure that if she did get up to play in the middle of the night and we didn't hear her she would at least be contained in her room. We always hear her though because I still have her monitor on my bedside table. On many occasions I hear her get up and go get her water cup (we leave a sippy cup of water on her bookshelf) and get back in bed. Many weekends we go visit either my parents or my in-laws and at either house she's in her own little bed in the same room as us. My parents have a gate, but my in-laws don't.



Our first hint that she's sleepwalking was a couple of weekends ago at my in-laws. I stayed at home and Randon & Karli went to go visit them. My MIL was sleeping in the spare room with Karli and Randon was on the couch in the living room. He said in the middle of the night he saw her walk in there like she was looking for him or me and was confused. He picked her up and she went limp again like she is when she's sleeping and he put her right back in bed. Then this past weekend Karli stayed with them for the weekend and pretty much the same thing happened. My MIL said that she heard Karli get up and before she could get to her Karli was already down the hall and in the kitchen. My MIL picked her up, and same thing as before, Karli was limp again and sleeping.



When we went to the sleep clinic back in December and they were going over Karli's history, sleepwalking was one of the things she asked about. Of course that was before both of these times happened, so we told her that Karli didn't do that. And I know I'm not an expert, but this sure does sound like sleepwalking to me. Needless to say now that this has happened twice, we will be getting a baby gate for their house so that next time at least she's contained in the bedroom. Now I'm even more worried about her apnea and am praying even harder every day that we can get her on the CPAP soon.

Sleep clinic appointment

Karli had her appointment yesterday with the sleep clinic. We had all hoped that at this appointment we would go over her compliance and how many hours she was wearing the Cpap each night. Well, as you know it's just not happening at all right now so instead we talked about how we could help her be more comfortable with it. We're waiting on a call to schedule the de-sensitization therapy and got a phone number for a behavior specialist in case the therapy doesn't work. We also got the results of her blood work we had drawn last week and her ferritin (the long term iron storage) levels are still rising which is a good thing. Low ferritin levels have been found to contribute to "restless leg". The sleep clinic wants her ferritin at 50 (I don't remember at the moment what the unit of measurement is) and hers is currently at 26. This is a huge improvement considering last year at this time it was at 4. We tried staight iron supplements and she only took those for 2 days before she figured out how nasty the stuff was. Can't say I blame her, yuck! So, we've just been giving her a children's multivitamin with as much iron in it as I could find. That's been working for several months now, so we'll just keep at it. We're supposed to check the ferritin again every three months so as long as it keeps rising, we'll be doing good.

The worst part of the day was when Piglet, or as Karli says, "Pliget" went missing. :( We're all so sad. As soon as we figured out Piglet was gone, I ran back into the hospital and retraced our steps, but no luck. It's heartbreaking to have to tell her repeatedly that we don't have Piglet anymore. I'm having a hard time finding the same one on the Disney website, so we're headed to the mall on Saturday to try and find it. Auntie Kimberly & Uncle Steve were so sweet to get it for her one of the times we visited them and Joel and now it's gone. :(

Karli's battle with sleep apnea

Since this is a place for me to record things that are going on in Karli's life, I figured I'd better blog about Karli's battle with sleep apnea and the Cpap machine.  I'll start from the beginning........

I didn't know much about sleep apnea or that Karli might have it until DH went to Dr. Sally Shott's presentation at the NDSC Conference in Kansas City in 2007.  The first thing he said to me when we met back up was that he was sure Karli had sleep apnea.  Dr. Shott had a list of common symptoms (I guess that would be the right word for it) and Karli fit almost every one.  Snoring, hyperactivity, weird sleeping positions, and restless sleep are just some of them.  We asked Karli's ENT for a sleep study and she had her first one in February of last year.  The result was that she has moderate obstructive sleep apnea and mild periodic leg movement disorder.  

Typically the first course of action would be to remove tonsils and adenoids.  Karli had hers removed when she was 16 months old for other reasons, so this wasn't an option.  I wonder how much worse her apnea would have been if we hadn't removed them when we did!  So the next step for her was to try Cpap.  It took 7 months to have her next sleep study done for the Cpap titration where they figure out what settings she needs for the machine.  I was so excited when she wore the mask for about 10 minutes while she was still awake and then slept for about 4 hours with it on overnight.  I was so optimistic that things were going to go well when we got home.  We finally got the machine at the beginning of January and started right away, and we have yet to get the mask on her here at home.  It just isn't going well at all and I'm so disappointed.  

We go for a visit to the sleep clinic on Monday and we're going to talk about de-sensitization therapy in the hope that it will help her tolerate it.  It's just so frustrating sometimes to think that we're already over a year into this and very little progress is being made.  I feel so bad for Karli since poor baby doesn't know what a good night's sleep is.  She's doing so well despite this but I can't help but think how much more she could be learning, etc. if we could just get her on the Cpap.  

To be continued.....I just pray the next post has good news in it!  :)  

An Award!!

I have my first blog award and my blog isn't even a month old!  How exciting!  My friends Courtney and Bethany both gave me this award, thank you both very much!

"These blogs are exceedingly charming. These kind bloggers aim to find friends and be friends. They are not interested in self-aggrandizement. Our hope is that when the ribbons of these prizes are cut, even more friendships will be propagated. Please give more attention to these writers. Deliver this award to eight bloggers who must choose eight more and include this cleverly- written text into the body of their award."

Ok, I hope I do this right, I'm still very new to this, lol!  I think these 8 women are great people and deserving of this award:

McKenna

Renee G.

Kristen

Renee P. 

Stephanie

Amy

Brigitte

Heather

I originally met all these great moms online, but have been lucky enough to have met them in person also at one of the NDSC conferences.  Ok ladies, pass it on!  

"I watch a nuvie"

This is something we hear about 500 times a day from Miss Princess. Watching "nuvies" (movies) is just about her most favorite thing in the whole world. We have this little CD case that looks like a ladybug that's full of her movies and she has to sit down and pick our which ones she wants to watch. Sometimes she'll get on a kick and have to watch the same one over and over (i.e. "Finding Nemo" for about 4 months straight) and then at other times she'll pick a different one every time. We've had "Beauty & The Beast" in the car DVD player for a while now and she can practically sing the opening song word for word. She can't always say the name of the movie clearly when she's telling us which one, but we definitely know which one she's talking about.

Just a few examples:

Beast-"Beauty & The Beast"

FoxHound-"The Fox & The Hound"

Beauty-"Sleeping Beauty"

Lilmermaid-"The Little Mermaid"

Puppies-"101 Dalmations"

Rella-"Cinderella"

PetaPetaPeta Pan-"Peter Pan" (poor baby gets hung on the "Peter" part sometimes)

AliceWunland-"Alice in Wonderland"

NoWhite-"Snow White"

Jungleking-"The Lion King"

If you haven't noticed the trend, we're Disney movie fans around here. :) We're really thinking about taking her to Disney this year even though she is so young and likely won't remember anything. But she's SO into Disney movies and tv shows right now that I know she would just love it. We're just trying to find a good deal since we're going to the NDSC conference also and that's going to end up being pretty expensive for 2 trips. We shall see.....

Decorating cookies with Grammie

This past weekend we went to my parents house and finally got around to decorating cookies. My mom had all the stuff at Christmas time, but it just never came together so we made cookies on Saturday.

Hard at work (she thought the bottom of the cookie was more fun to decorate, lol):


Just a little taste:


Did I get some on my face?


I did? Where is it???


The goods:

It's a fish bowl!

Here's my second attempt at a cupcake from my new favorite book. These were fun, but I need to work on my dipping technique. That and I need different candy for my "seaweed".

Look what I made!

My sister gave me this really cute book about cupcakes for Christmas. It's called Hello, Cupcake! and it has so many cute ideas for cupcakes. I've always had an interest in baking and cake/cupcake decorating, but never have time to do anything. I've been itching to try one of the designs since Christmas and decided to make these today. So.......here's my corn on the cob!



Edited to add:
Yes that is a lemon starburst for the butter. And black & white sugar for the salt & pepper. I don't think the jelly beans would taste very good if you ate them with the cupcake. I was going for color, not flavor and there's lemon, buttered popcorn, vanilla, and one more I can't remember at the moment. :)

YAY! Thank you Bethany!

Doesn't it look pretty!  My awesome friend Bethany helped make my blog look pretty! Thank you SO much! She took that picture of Karli while we were on our harbor cruise in Boston. We were there for the NDSC conference. Like Bethany said, it looks like Karli is looking out over her kingdom. It couldn't be more perfect. Thank you again so much!

My patience is being put to the test today

Oh my goodness, it's only the afternoon and it's been such a long day!  Miss Thang has been so bad!  I don't know if she woke up on the wrong side of the bed or what, but I want my sweet girl back.  I'm about to outlaw the word "No" in our house, because it's being horribly abused by a certain 3 year old.  I'm really hoping she wakes up in a better mood after her nap!  She's feeling a lot better, but still gets tired pretty quickly and has a bad cough that's lingering.  

On the mend

Finally she's turned a corner and is feeling better.  We all finally got a (semi) good night's sleep last night and we all really needed it.  Hopefully she'll take a good nap and have an even better night tonight.  Her rash is starting to get better too.  If she keeps this up she'll be back at school and I'll be back at work tomorrow!  

Sick princess

Poor Miss Karli does not feel well at all.  She went with Daddy to go see both sets of grandparents and woke up sick after her nap yesterday.  She's running fever for the first time in I don't know how long, is very congested, coughing, and has thrown up a couple of times from all the drainage.  So, to the doctor we will go first thing tomorrow.  We've been very lucky in that she hasn't been on antibiotics for a little over a month which is a record for her!  Hopefully we can get something good for her tomorrow and get her feeling better soon!  I hate it when she doesn't feel well.  :(  

Monday update....It's strep throat and scarlet fever.  She's so miserable.  Poor baby :(

A little about the Princess

Just in case you didn't know already I thought I'd give a little history about Miss Karli.  She is a 3 1/2 year old princess who happens to have Down syndrome.  She had open heart surgery when she was 4 months old to repair a heart defect and is doing great.  She's had 4 sets of ear tubes, her tonsils & adenoids removed and tubes put into her tear ducts.  Our latest adventure is with a CPAP machine to help with her sleep apnea.  I work full time so Karli goes to daycare and is also in a PPCD (preschool program for children with disabilities) classroom at school.  She's got the most wonderful personality and is so much fun!

My very first blog post....

I figured since everyone else in the world seems to have a blog I'd give it a shot. Plus it would be a good way to record memories of Miss Karli and her adventures. Thanks for reading!