Sunday, May 24, 2009

BBQ with friends ...

Yesterday we had some friends over for a BBQ. We really had such a great time letting the kids play and just relaxing. Our kids have been friends most of their lives and they go crazy when we get together.

Actually, I'm not sure that crazy describes it. Perhaps ... berserk?

Mason and Alex ... the two instigators ...
The craziness begins ...Chicky had to get in there too ... isn't she the cutest?!Payton cracks me up!My little fish ..
Nika was less than thrilled to be in that cool water ...
Umm ... Jillian was less than thrilled too! Poor baby girls!
Belly flop! Don't mind the wedgie!
Mason going down the slide ...
Hannah and Chicky ...
Hannah was so cute ... she kept saying, "Where's Chicky?" And then she'd say, "Where's the other Chicky?" ... referring to Nika ... so funny!
Little tanker ...
Best buds ...

Wednesday, May 20, 2009

Speech Therapy

{Ahem ... excuse the cell phone image quality}

Payton has had several sessions of private speech therapy now. She is warming up to the therapist and I actually am starting to like the "medical model" ... despite the inconvenience of it all.

The therapist has done a lot of bubbles with Payton, which she loves. Payton already says her version of "bubbles", which sounds like "bub-ba". And we are trying to get her to say "pop" ... as in pop the bubbles. Get it? Haha.

She has been working with her also a little bit on colors, prepositions (in, on, under, etc), animal sounds and counting 1, 2, 3. Because yes, she is three and she doesn't really know these things.

Which makes me so bummed.

So we are on a mission. Here are some color buckets I made for at home. She can easily match the colors, but the key here is to get her to say or sign the color too.

Umm ... I guess I need to learn the signs. So much to do, so little time.

Monday, May 18, 2009

Celebrating my girls.

This past Saturday, we attended the annual picnic that is put on by our local Down syndrome association. The kids had a blast, as they always do. And I had fun catching up with all the moms ... and meeting some of the new families.

I am always so excited to see all the new babies that are being born with Down syndrome. I am sure that sounds very strange, but it is true. They are all so beautiful and I love chatting with their parents, if only to just let them know that we have been in their shoes and that everything is going to be fine ... even if it might not seem that way for them just yet.

Wednesday, May 13, 2009

Mason Update

Mason is doing much better. Thank you to everyone who has asked about him. :)

Monday, May 11, 2009

Monday morning update ...

Kyle and Mason got home last night around 3 a.m. Sure enough, Mason has croup. I am not sure exactly what caused the vomiting ... I guess from coughing so much.

I seriously have never, ever heard someone struggle to breath like he was. It was pretty scary. It wasn't the normal wheezing that comes with croup ... I'm not even really sure how to explain it.

He also woke up this morning with petechia all over his face, which sort of freaked me out. I am so used to it in my girls, but not Mason. I think I am pretty much immune to medical stuff when it comes to the girls, but for some reason it is so different with Mason.

Crazy stuff.

1:23 a.m.

Just talked to Kyle. Mason is breathing the same, but the ER nurse took an oxygen level and that was okay. They gave him a shot of Decadron to open up his airways and now they are waiting for a room.

I'm sure he has croup, especially since his sisters both just had it. But dang ... that is the worst sounding croup I've ever heard!

12:44 a.m.

About 15 minutes ago, Mason woke up coughing like a seal. A very large seal. The worst I've ever heard.

Kyle ran into Mason's room with me in hot pursuit. He grabbed him out of bed and took him straight to the bathroom. And Mason vomited.

Not such a big deal, but he couldn't breathe. He was breathing the most labored breaths I've ever heard and he just couldn't catch his breath. His little body was shaking out of control and he kept saying how cold he was. Mind you, we have the AC on because it is so hot in our upstairs.

After watching him breathe like this for several minutes with no relief, I told Kyle we needed to take him to the ER. I totally freaked out. I am so not used to dealing with illness and health problems with Mason, as weird as that sounds. Typically, it is the girls that have the issues.

So please pray for Mason ... I know Kyle is freaking out too, so that says a lot! As soon as Mason heard me say "ER", the first thing he said was, "Am I going to have to get a shot?" Poor kid, he is so worried about having to get a shot while I'm trying to figure out if he can even catch his breath.

I am blogging because now I'm wide awake and sitting here waiting for Kyle's call. Even though I know they are not even at the ER yet. It is going to be a long night.

Sunday, May 10, 2009

Mother's Day

I had a great Mother's Day. I got musical cards from each of the kids ... and Mason made the above picture for me, with the help of his Daddy ... I love it! You will see it has the whole family, with our ages and everything. Nika didn't get any googly eyes though, because her head was too small. Crazy kid.

I also got Jillian Michael's workout for the Wii. Kyle said that Mason was so excited to buy this for me ... apparently they were walking through the store when Mason saw it, recognized Jillian from the book I'm reading and had to buy it for me.

So cute.

When Kyle asked Mason where he wanted to take me for Mother's Day, Mason said ... bowling. Alrighty then. The kid has never been bowling in his life, nor do I know where he got this idea ... but bowling it is.

{Ahem ... excuse the cell phone image quality}

Someone please remind me when the last time I bowled was.

We walked into the bowling alley and the first thing I noticed was that the guy behind the counter was smoking. Guess they haven't gotten rid of that rule! And as tempted as I was to order a hamburger and french fries from the grill, I was pretty sure that it would taste nothing like it did at the good ole Waunabowl.

Inside knowledge peeps, sorry.

Anyway ... I was very impressed that they carried bowling shoes that would even fit Payton ... a teeny size 7. They were pretty cute. We got two lanes ... one with bumpers and one without. Whatever happened to the blow up bumpers? Nowadays they pop right out of the gutter ... who knew? And they even brought a little ramp out for Payton to use ... so cute.

Before I was a Mom ...

Before I was a Mom,
I never tripped over toys
or forgot words to a lullaby.

I didn't worry whether or not
my plants were poisonous.
I never thought about immunizations.

Before I was a Mom,I had never been puked on.
Pooped on.Chewed on.Peed on.
I had complete control of my mind
and my thoughts.I slept all night.

Before I was a Mom,
I never held down a screaming child
so doctors could do tests.Or give shots.
I never looked into teary eyes and cried.
I never got gloriously happy over a simple grin.
I never sat up late hours at nightwatching a baby sleep.

Before I was a Mom,
I never held a sleeping baby just because
I didn't want to put her down.
I never felt my heart break into a million pieces
when I couldn't stop the hurt.
I never knew that something so small
could affect my life so much.
I never knew that I could love someone so much.
I never knew I would love being a Mom.

Before I was a Mom,
I didn't know the feeling of having my heart outside my body.
I didn't know how special it could feel to feed a hungry baby.
I didn't know that bond between a mother and her child..
I didn't know that something so small could make me feel so important and happy.

Before I was a Mom,
I had never gotten up in the middle of the night every 10 minutes to make sure all was okay.
I had never known the warmth,the joy,the love,the heartache,the wonderment or the satisfaction of being a Mom.

I didn't know I was capable of feeling so much, before I was a Mom.

Saturday, May 9, 2009

Mother's Day at Preschool

Yesterday Mason's preschool put on a little thing for the Moms. They sang and signed songs, gave us gifts and we had cake. I love watching him in his element and with all his little friends ... so cute!I got a beautiful flower pot with my son growing out of it ...
... and another gift I got was a drawing of myself with a Q&A on the back. All of the kids' pictures were laid out on tables with a piece of paper covering our names. The moms had to guess which picture was us. Here is me ... looks just like me, don't ya think?
And the Q&A on the back side ... all the moms really enjoyed this. The answers given by the kids were hysterical! You can see mine down below ...
Q: How old is your mom?
A: 70.

Q: How tall is she?
A: 2 feet.

Q: How much does she weigh?
A: 200 pounds.

Q: What color is her hair?
A: Light brown.

Q: What does she do around the house?
A: She cooks. She goes for walks. She cleans.

Q: What is her favorite drink?
A: Chocolate milk.

Q: What is her favorite thing to eat?
A: Cake.

Q: What is her favorite TV show?
A: Dr. Phil.

Q: What does she cook?
A: Macaroni.

Q: Where does she like to go?
A: To the store.

Q: What is her favorite hobby?
A: Play with me.

LOL ... I was dying when I read this. I'm 70, I am two feet tall and I weigh 200 pounds. Oh, and I like to eat cake? Seriously. I never eat cake! LOL.

Funny stuff.

Thursday, May 7, 2009

Vitamin K Deficiency. Oh, and Juicing.

So I got a message yesterday from our geneticist saying that Payton's bloodwork shows that she has low Vitamin K levels. When we were at our appointment with the geneticist, I was telling her that we had run out of Nutrivene and needed to order more. As such, she hadn't been on it for a couple weeks when we had her bloodwork done.

So when the geneticist called yesterday, she wanted to know if we had restarted Payton on the Nutrivene by the time we had her bloodwork done. I haven't talked to her yet, but the answer to that question is no. And ... even if we had, Nutrivene does not have Vitamin K in it. So it would not have mattered anyway.

So we have another issue to deal with here. Just another day in my life.

And what did I do but read online about it ... it is what I do best. Per Wikipedia ... Vitamin K is mostly required for blood coagulation. It is normally produced by bacteria in the intestines, and dietary deficiency is extremely rare unless your name is Payton the intestines are heavily damaged, are unable to absorb the molecule, or due to decreased production by normal flora, as seen in broad spectrum antibiotic use. Vitamin K is found chiefly in leafy green vegetables such as spinach, swiss chard, and Brassica (e.g. cabbage, kale, cauliflower, broccoli, and brussels sprouts); some fruits such as avocado and kiwifruit are also high in Vitamin K. By way of reference, two tablespoons of parsley contain 153% of the recommended daily amount of vitamin K.

No wonder we have this problem. Perhaps I should have my Vitamin K level tested. Sigh.

After reading this, I am sort of wondering if she is getting too much yogurt. With her limited eating issues, it isn't like I really have a choice. But ... technically, doesn't yogurt increase the normal flora in the intestines, meaning she should be absorbing Vitamin K fine? She hasn't been on antibiotics in awhile.

I'm so confused.


Sort of related ... and unrelated ... to this is juicing. Do any of you juice? I have read a lot about it and given our family's horrible history of not eating the proper amount of fruits and vegetables, I feel like this would be great for us.

A few weeks ago, an infomercial came on TV for Jack LaLanne's Power Juicer. I usually am not taken with infomercials, but ... haha ... I was totally intrigued by Jack and his juicer. And now I really feel like this is something we need to do to get the proper nutrition in the kids all of us.

Do any of you juice? What juicer do you use? Do you like the process of it all?

Tuesday, May 5, 2009

One day with no doctors, please?

We have seen a lot of doctors the past few days. Let's see ... for a stats update, Nika is 25 lbs and 32.5 inches tall.

Yesterday morning Nika had a swallow study done. No real reason other than I like to be proactive with my girls. Well, Nika does have some funky swallowing issues, but mostly the reason is that kids with Down syndrome have low muscle tone, which also can affect the way things work on the inside, causing aspiration.

Anyway. Nika is not aspirating, however apparently there are remnants of food that are sticking around in her esophagus after she swallows. The speech therapist basically told us to give her lots of fluids when she is eating to wash things down. I wonder what causes this? The only other issue is that Nika sort of accomodates her swallow by putting her head and chin sort of down and forward. I have noticed this on occasion, but not always. I guess that isn't technically correct eating form, but at the same time, the therapist told me that they try to teach people who have issues to eat that way.

Who knows.

So from here we basically have a lot of work to do to strenthen her mouth. Despite the low muscle tone in her mouth, she doesn't really have tongue protrusion, which seems odd to me. I think I am going to order some of the straws and horns that are part of the Talk Tools therapy. I have also noticed that instead of using her lips to pull food off of a spoon, she uses her teeth ... which is the wrong way to do it. So I have to figure out how to erase two years of incorrect mouth placement and fix it.

Fun times.


Yesterday afternoon, Nika and I went to the dermatologist. I went for followup on my pre-cancerous spot ... and to have a skin tag removed frozen off. Gross. And ouch.

I took Nika with me because I wanted the dermatologist to look at some spots on her. They are essentially like sand paper spots on her thighs and her biceps ... the thighs being worse. She gained another diagnosis ... Keratosis Pilaris. Apparently it is really common in people with dry skin and even more, people who have Down syndrome.

So ... we got some prescription steroid cream for the spots. We were told to use a gentle soap, like Dove, and Cetaphil for a lotion. I wonder what Cetaphil does that Eucerin or Aquafor doesn't do. Either way, the dermatologist said Cetaphil, so we'll go with that. Because Eucerin and Aquafor haven't gotten rid of it.


This morning Nika and I saw the pediatrician to discuss her immunization schedule. Thus far, we have been doing titers to figure out what exactly she is already immune to. I really didn't want to reimmunize her if we didn't need to. I told the doctor I wanted to do it slowly ... perhaps one shot per week. Immunizations make me really nervous because of all the autism accusations ... but I guess it doesn't make me nervous enough to not do it.

So today Nika got her first shot ... Diptheria, Tetanus and Pertussis. The pediatrician is coming up with a schedule for the remainder of the immunizations. We also got a script for her AAI xrays that we need to have done before her ABR.

Phew. I think that is it for now.

Sunday, May 3, 2009

Bloodwork. Sickness. And ramblings from the Mama.

This past Friday, I took the girls to the lab for blood draws. I really had no plans of having them draw on Payton because I can't restrain her strong little self, but we decided to try and see what happened. They drew on Nika first and she just sat there and stared at them the whole time ... no tears. She is such a little champ. Then I grabbed Payton and while she was a bit anxious, she did really great and we got all the blood work on her that we needed.

The reason for our success at the lab was that my favorite phlebotomist ... or should I say the only phlebotomist that can actually get a good draw on Payton ... was back from maternity leave, where she had been the last time we visited the lab. Remember, our experience from H E double toothpicks? Well the same tech we dealt with last time was there this time and she was just rude as can be to my favorite phlebotomist right in front of me and other customers. I was so annoyed that I ended up complaining to the supervisor, who happened to be on site when I was there. I told her about our experience the last time we were there and I also told her about what happened that day.

I am just so glad to be done with blood work for what I hope is awhile. I still can't wait to see what Payton's iron levels look like though. I also think Nika's are probably low, but we'll see.


I mentioned a few days ago that Payton was not feeling well. She had a fever, croupy cough and was wheezing. For fear of the crazy swine flu, I took her to the doctor after we were done at the lab. They confirmed my real suspicions that she had croup and gave her a shot of Decadron. Man, was she ever pissed. Poor girl ... first she had to fight off the phlebotomist and then the doctors and nurses at the pediatrician. Hey, everyone needs a good workout, right? LOL.

She is doing much better today, although her nose is now running more than it was. But ... what is new? Runny noses are common around here in my girls. Sigh.


Tonight I enjoyed an evening out with friends. We went to see the movie Obsessed and then to dinner. The movie was really good ... I thought so, anyway. LOL. I cried ... big surprise ... and all was well that ended well.


Remember my weight loss plan? I have been sticking to it and have lost almost 10 pounds so far. It is slow going, but I have realized how good it feels to be working out again. I try really hard not to cheat, but so far I keep cheating. LOL. Maybe someday I'll be able to resist completely.

Yeah, probably not.

I wanted to tell you about this new book that I'm reading ... Master your Metabolism by Jillian Michaels. You know, the Biggest Loser chick. She is hardcore on that show, but man does she ever know her stuff. The book is totally about how your hormones affect your body and your metabolism more than anyone would ever realize. It really is so interesting and I am trying to get an appointment with my endrocrinologist to have them test all of my hormone levels. I *know* that they are off ... I just know it.