Thursday, April 30, 2009

Medical Updates

Last week Payton saw her geneticist. She weighed in at 36 pounds and is 37 inches tall. She falls within great percentiles on the typical growth chart, so her geneticist is thrilled with that.

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We discussed her speech and the doc would like us to start using pictures boards here at home. Sigh. As if we need something else to occupy our time. I'd rather go more hardcore on signing, because she finally is doing great with imitating sign and using it without being cued.

*trying to remain positive*

Payton's speech is just so ready to come out of her mouth, I can tell. It is like we are standing at the top of a mountain, but we just can't pull ourselves over the peak. She has been doing really well these past couple weeks as far as imitating sounds and even imitating intonation when she isn't necessarily imitating sounds. Her favorite new word is shoes ... it is so cute. I need to make a list, but other words ... or approximations ... she has been saying is pizza, Mason, bubbles, pop, all done, dog ...

She talks all day long. We don't always know what she is saying, but I'm pretty sure she knows exactly. Last night she sat on the couch and read a book to her doll. It was so cute. She held it outward like her teacher does at school, flipped the pages and read the entire thing ... in her own way. I just sat there and smiled at her ... that chick makes my heart swell out of my body.

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We also discussed Payton's horrible eating habits with the geneticist. At times, I have been at the point of wanting to get her into a feeding clinic. She eats chicken nuggets at least once per day, if not twice. That and pizza are pretty much the only main foods she will eat. Although she is getting better and better with pasta ... finally! She does eat yogurt and of course, anything salty like chips or crackers. The only fruit I can get her to eat is mandarian oranges ... and sometimes that comes with a gag. And veggies? Forget it. That is why I give her Juice Plus ... in gummy form, which she will also finally eat.

Her eating issues have definitely given me a run for my money. Her geneticist is not completely concerned, as Payton's growth has been excellent and it is clear that she is getting the nutrition she needs. We also give her Nutrivene, so she is getting some of what she needs there too.

*Disclaimer: I did not mention Nutrivene for anyone to come here and be negative about it. So please, refrain. And for those of you who do not know what I'm talking about, just know that the use of Nutrivene is very controversial. Nuff said. :o)

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Let's see ... we also got scripts for bloodwork and we will have another set of AAI xrays done. I can't wait to see what her iron level looks like, because her Restless Leg Syndrome is out of control ... and low iron contributes to that.

Other than that, Payton is doing fabulous. She is such a strong little girl ... the doctors are amazed at just how strong she is. She fights them tooth and nail ... LOL. She is feisty, like her mama.

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I took both of the girls back to the ENT yesterday to discuss hearing, speech and tubes. Payton's right tube fell out awhile ago and the left tube is blocked. So I guess we are getting no benefit from tubes right now and the plan is to replace them. Nika's ears continue to look great. She has a little wax build up, but nothing that is alarming.

So we discussed speech and whether or not the girl's are hearing to full capacity. We never get much of a reading on the tympanogram from either one of them, but their small ear canals could be batting against us. We have decided to get a sedated ABR for both girls just to be sure and to know what we are working with. I am less than thrilled about having to sedate them, but I think having these results will help us to know what we are dealing with, if anything. I like to be proactive. Both girls will be having AAI xrays beforehand, just to make sure there are no issues with their necks in case they would have to be intubated. God forbid.

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And now ... little Ms. Payton is sick. I'm not sure if it is all the changes in weather we have had or what. She has a croup cough, is wheezing and now has a fever. Could summer come and stay please?

Sunday, April 26, 2009

Kids. OnStar. Don't touch!

Scenario: Mason, Payton and Nika are sitting in the car listening to music while Kyle and I assemble rocking chairs in the driveway.

Connecting to Onstar Emergency ...
*blares from the car speakers*

Ring, ring, ring ...

*shit*

*sprint to the car*

Onstar Emergency, this is Johnny. What is your emergency?

*pull kids out of the car*

Sorry, my daughter hit the button on accident.

Okay, we will disconnect the call. We are here if you need us.

Thank you.

*sigh*

Payton! No! No! No!

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Unfortunately this has happened to us more than once. Okay, more than twice. Perhaps more than three times. Even when we have been sitting in the car with the kids. Sigh. Why is it that the emergency button is in such an ... umm, accessible ... spot? The first time the button was pushed, we disconnected the call before they answered. But they called us back. Apparently you can't hang up on an emergency call. Oops. Makes sense to me ... now that I think about it.

I know we aren't the only ones. Fess up peeps. Let's hear it. BTW ... watch this video ... hysterical.

Saturday, April 25, 2009

Summer is on its way ...

The weather was just beautiful today. It was in the mid 90's, which is the hottest it has been this year. It was a welcome surprise!

This morning, we took the kids for a long walk. One thing we definitely received confirmation of is how incredibly fair skinned Nika is. It didn't even occur to me to slather on some sunscreen at 9 in the morning, however we clearly should have. Poor little miss got a little burnt just from riding in the bike trailer. I got a little burnt too on my shoulders, but hey ... I could use a little color. Ha.

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Mason has been asking to plant flowers. I guess the warm weather over the past week or two has gotten him in the mood. So after our walk today, I took him to the garden center to pick out some flowers and a pot. Holy crap ... who knew planters were so expensive?! Seriously! I also ended up buying two ferns, but when I found them for $20 cheaper per plant later on in the day, I sent Kyle to return the first set. Ha ... hey, that is $40!
Mason getting ready to plant his flowers ... he was totally annoyed at me for wanting to take a picture ... LOL. Mom, pour the soil already!
Ta da! Beautiful flowers, bub!
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The girls have been getting along so great. It is so fun to watch them together ... best friends forever. Payton has definitely taken advantage of her big sister role ... in two ways. She is constantly looking out for Nika. For example, she will throw a fit if I give her pretzels, but not Nika. Said fit will continue until Nika gets her pretzels ... even if Nika was eating something else. I guess everything they do has to be the same? Sigh. Payton also has learned how to be a little bossy girl ... she pretty much thinks she is in charge of Nika. It is pretty funny, actually. Typical big sister ... right sis?

Ms. Bossy Pants herself ... man I love this chick ...
Little sis ... looking cute in her crooked sunglasses ... you think she has ever worn sunglasses before?

Tuesday, April 21, 2009

Wordless ... Tuesday?

Image courtesy of Vera Lana Photography

ETA: You can view our full proof gallery here (username: customer, password: myproofs). These images are copyrighted. That means copying or printing these images is illegal. Don't say you weren't warned. Ha.

Sunday, April 19, 2009

Sasha. My girl. And the circus.

Thank you so much to everyone who prayed for Sasha as he underwent open heart surgery this past Thursday. The surgery went very well and hopefully he will be moving out of the PICU today. Please continue to pray for a smooth recovery!

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Gotta brag on my girl real quick.

We have been working with Payton for a long time on wrist rotation. A good example of that is opening doorknobs. I do believe it has been a blessing in disguise that she has not been able to turn doorknobs.

Until now. This past week, she has mastered the art and now we're in for it. Now we need to figure out how to keep her out of the office (where she likes to empty drawers) and the nursery (where she likes to empty drawers). Do you see a trend here? We're about sick of putting things back in drawers. Sigh.

But ... YAY for progress!

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Earlier this week, we were given tickets to the circus from our local DS group. The kids had a lot of fun!

I do have one gripe though. Could there possibly be an organized event that has more inflated prices for food and loot? Seriously.

Carton of popcorn = $7
Bottle of lemonade = $9
Plastic sword = $20
Light up wand = $25

Shall I go on? I mean seriously. Those prices are so ridiculous. I think I can pay less than that at Disney World! Needless to say my kids got the $5 Barnum and Bailey flag and a thing of popcorn. Nothing more. Sorry kids!

Wednesday, April 15, 2009

Pray for Sasha

Playing at our hotel in Russia

You may remember Sasha, our little friend that was in Nika's grouppa in the baby home. We traveled with Sasha's family while we were in Russia and we have been lucky enough to have a couple play dates (#1 and #2) with the kids since coming home. Sasha and Nika are always excited to see each other and it makes me so happy that they will always have that little part of their lives here at home in America.

Greeting each other after being home a month

Sasha has a very severe heart defect that requires three surgeries to fix. He had the first two surgeries in Russia before he was adopted, but he is still in need of that third surgery.

Well, tomorrow is the big day. Sasha will be undergoing open heart surgery to repair the remainder of his heart defect.
Playing together after being home for four months

Please join me in prayer for Sasha and his family. I'm sure we can all imagine how hard it would be to hand our child over for open heart surgery ... and I know many of you in the Down syndrome community have already walked this road.

Please pray for a successful surgery.

Please pray for a smooth recovery.

And please pray for everyone's nerves ... Sasha and his Mommy and Daddy.

PS ... I know Sasha's parents will be reading this, so please leave a comment here if you are praying for them. I know they will appreciate everyone's support immensely. Thanks friends.

Tuesday, April 14, 2009

Date Night

No, I'm not talking about a date with my husband. Although we are long overdue for one.

Tonight Mason and I went to the movies all by ourselves. I tried to talk him into seeing Hannah Montana, but once he found out Monsters vs. Aliens was playing, Hannah Montana went down the drain. Yes, I really want to see the Hannah Montana movie.

Shush.


Monsters vs. Aliens actually was really cute. For a cartoonish movie, it held my attention the entire time. Except for the part where the punk teenagers behind me thought it would be funny to flick their drink on me. That distracted me ... and I'll have you know I stared them down and let them know what I thought about it. Seriously punks ... I'm sitting here with my five year old and you are going to flick your drink on me?

GROW UP.

So Mason and I moved seats, I let the steam flow out of my ears and we watched our movie. Oh, and we munched on nachos, popcorn and Nestle Crunch balls ... you know, those things. What in the heck are they called?! I'm having a total brain fart right now. Anyway ... none of this was great for my diet, but whatever ... I get a free day, right?

Sunday, April 12, 2009

Easter Day

This morning, Mason woke me up at 6:30 a.m. asking if he could go downstairs to find his Easter basket. I told him he had to wait until his sisters were awake ... which, thanks to him, wasn't long. Sigh.

Mason found his eater basket ... and his Razor scooter ... he was so excited!
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Chicky ... just looking cute ...
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Nika ... looking just as cute, with big brother looking on ...
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Bubs, showing off some Easter basket goodies ... {So funny ... Mason is sitting here watching me blog and he just told me, "Mom, I don't look cool in that picture. Look at my smile. Look at my eyes. I don't look cool." Haha.
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The kids, enjoying their loot ...
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After eating breakfast ... homemade waffles, courtesy of Daddy ... the kids put their silly face stickers on the eggs we dyed last night. Several of the eggs landed on the floor, though. Ahh, the joys of having a 2 and 3 year old.
Baskets2-3
Baskets-4
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We had a nice relaxing day at home. Kyle's sister, her husband and my nephew came over to spend the day with us. I did a cake smash shoot with my nephew ... I thought it was fun ... Jaxson, well ... I think he thought different. Haha.

For dinner, we made a good 'ole American meal ... steaks, baked potatoes, pasta salad and strawberry shortcake. Nope ... no ham here. :o)

After dinner, we did an Easter egg hunt for the kids. There were just 40 eggs total, so that meant each kid got 10 eggs. Mason founds his eggs in about 2.2 seconds, so he proceeded to throw them back in the grass for the little kids so that he could find more of the eggs that were hidden harder for him. All the kids had a great time.

Mason ...
Egg hunt-1
Chicky ... she was having a blast!
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Nika ... I wasn't sure whether or not she would participate, but boy did she prove me wrong! She caught right on, carried her little Easter basket and took off for the eggs. She is walking 100% of the time, but she is very wobbly on the grass. She fell a lot, dumping her eggs and picking them up every time. So cute ...
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Jaxson enjoying his first Easter ... he was shaking those eggs like crazy ... go Jaxson! BTW ... this is my rockstar nephew who started walking at like 10 1/2 months ... the little dude is crazy!
Egg hunt2-2

Saturday, April 11, 2009

Easter Eve

Mason: Mommy, does the Easter Bunny wear a costume?
Me: No, he is a bunny ... he doesn't have to wear a costume.
Mason: Well how does he open the door?
Me: He could use his paws if he needed to, but the Easter Bunny is magic ... he doesn't need to go through the door.
Mason: *confused*

10 minutes later ...

Mason: Daddy, the Easter Bunny uses his paws to open the door. But I don't understand because the Easter Bunny can't reach the door knob ... so he just uses his magic.
Kyle: Is that what Mommy told you ... that he uses his paws and magic?
Mason: Yes.

LOL ... I couldn't figure out why he thought the Easter Bunny couldn't reach the door knob. It just dawned on me that he is picturing a real bunny/rabbit in his mind rather than the "Easter Bunny" we see at the mall.

Friday, April 10, 2009

Mason-isms

Me: Why are you guys doing push ups?
Mason: Because Mom, that is healthy for our body.
Me: That's right. That is healthy for your bodies.

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Mason: Mommy, look! That car has Sponge Bob and Tweety Bird on the window.
Me: Yeah, I see.
Mason: But Mommy, I'm not allowed to watch Sponge Bob.
Me: That is right, Bubs. You are not allowed to watch Sponge Bob.
Mason: Yeah, because he says bad words that you don't like.
Me: That's right. You are so smart.

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Mason: Man, I love exercising. Because it is good for your heart!

Sunday, April 5, 2009

Ms. Payton

Isn't she beautiful? Clearly I'm biased, but seriously ... I could look at her all day long and never get bored. I'm sure lots of you don't understand that, but oh well. Haha.

The past few weeks have led to some changes for Payton. I pulled her out of Mom's Morning Out. I was on the fence about doing this because I liked that it was an environment for her to be exposed to her typical peers, but we have more important things to do right now. Plus ... I'm not convinced that her teachers for good advocates for her, as far as pulling her along with the class. Err something.

So more important things are on our plate. Like more intensive speech therapy. My girl is getting frustrated. Frustrated that she can't verbally tell us what she wants. Frustrated that she can't always make us understand. Pretty much frustrated that she can't talk. It is leading to meltdowns and quite frankly, frustration among us all.

I had her evaluated by a private speech therapist ... and they are wanting to see her twice per week. On the surface that sounds fine and dandy, but logistically I do not know if it is possible. I am going to try to get her in during the time that she would have been at Mom's Morning Out, but if the timing is not just right, there is no way I can drop off Mason at school, get to therapy (30 miles from our house) and get back to pick Mason up on time.

Logistics, people. Logistics.

We also are still waiting for her special needs school to conduct a speech evaluation on her. I'm confident that once they finally get it done, she will be getting speech for at least a few minutes per day at school. But ... at this point I don't have much faith that the friggin evaluation will be even be completed by the end of school. I hope they prove me wrong.

And ... we are going to start the See and Learn Program. Has anyone else used this program?

Wednesday, April 1, 2009

Time for school

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This morning I registered Mason for kindergarten. Kindergarten, people.

I know I said this when he lost his first tooth a couple weeks ago, but when did he grow up? Where has the time gone? All of a sudden I have this kid who is listening to an iPod, teaching me how to play video games and telling me things that make me wonder, "Where in the heck did he learn that?"

As I walked through the halls of the school today and glanced into the cafeteria, my heart skipped a beat. What if he doesn't have anybody to sit with during lunch? What if he gets teased by the other kids? What if ... What if ... What if ...

Ahh ... all the sudden this is becoming very real. I know in my heart he will do fine, but it makes me very nervous. It will be good preparation for me for when the girls start school ... because I'm pretty sure that will throw me over the edge.