Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Saturday, December 29, 2012

Life's little surprises

When we found out that Lauren would be born with Down syndrome I was sad that she wouldn't be smart.

Well, she is SO smart! At not even 11 months old she has two spoken words, Dada and Bubbles. She says Dada with purpose, obviously meaning Greg. Bubbles is what my kids call my twin sister and Lauren will repeat it when asked, if she feels like it.

I'm pretty sure she tried to sign mama today! Seriously!

Two spoken words and an almost sign and 10 months old.

And I thought she wouldn't be smart!

Her awareness and alertness has really taken off just in the past week or two. She seems so aware of her surroundings and seems to be constantly taking in information and learning. It's so wonderful to see!! It's like a switch went off or something and now shes constantly learning.

Friday, December 28, 2012

Christmas post

We had a wonderful Christmas, I hope you did as well!

 

 
And then we got all tired out:
 

 

Thursday, December 20, 2012

She did it!!!

We have been working on getting to a sitting position in early intervention for a while.

Today, I left Lauren to play in the living room while I went and got her clothes and chatting with Greg in the kitchen, wrote a shopping list (it wasn't that long, maybe 5 minutes) and then I happened to glance into the living room...

She was sitting up!!! She actually got herself into a sitting position! WITHOUT her hip helpers, which is shocking. As soon as she saw me she smiled and waved!

I am so excited!!!!

Tuesday, December 18, 2012

Prayers for Sandy Hook

Yesterday when I went to pick Ryan up from preschool, I was in tears. I hugged him and I cried. I couldn't help but think of the 20 families in Newtown, CT that didn't get to pick their children up from school. Having a child is truly like trusting your heart to walk around outside of your body. I can't even begin to imagine what they are going through. I am so incredibly sad for them.

We all sit  back after tragedies like that and say, "Something must be done." But what? And who? Nobody can agree what to do, it turns into politics and gun control and who's fault it was and placing blame on the government, the schools, the mother, autism, divorce...

The truth is that something must be done. And I don't think it's as easy as gun control. Or "putting God back into our schools" (which has been tossed all over Facebook). Personally, I think something major needs to happen for mental health. Mental health is the forgotten healthcare platform because you can't see it. It's a stigma nobody wants, nobody talks about and nobody wants to throw money at. With our current national debt and spending rising in unprecidented ways, can't just a fraction go to mental health? Please?

Read this woman's blog post. I am Adam Lanza's Mother

For now, all I can do is pray.

Saturday, December 15, 2012

I am overwhelmed

I am overwhelmed. Can I say that out loud?

I am overwhelmed with work, doctor's appointments, therapy appointments, crazy kids, co-op preschool, school for Greg, the house. Life.

Greg is working his butt off right now, he's working full time plus taking classes 3 nights a week. So he's pretty much never here during the week. So he's the one I take it out on, which is so not fair to him. I'm a jerk. We never see each other because I work at night and he's gone all day. I need a break. I cancelled two appointments this week and one for next week- and I don't feel guilty at all. (I rescheduled, I promise!) I want to just stay home with my kids and husband and not having any plans. I miss sleeping in the same bed as Greg, much less actually spending time with him!

I'm being horrible to him and do you know what I woke up to this afternoon? Flowers. Seriously. I love this man! He gets me.

I woke up today around 2. As soon as I opened our bedrooom door I heard Ryan from the living room. "Mommy!!!! You're awake!"

Lauren was giving me hugs and kisses and smiles.

Greg had flowers on the kitchen table for me.

How in the world would I make it without my family? They are my everything.

Lauren saw her cardiologist this week. She's doing great! One doctor said he heard murmers from the two residual holes (ASD and VSD) along with some moderate valve regurgitation. The other doctor, her main cardiologist, said she only still has the residual ASD that we knew about and that it's not posing any problems at all. We don't go back until July. She'll have another echo then (probably sedated which freaks me out)- the first since being discharged from the hospital in April. If everything looks okay we'll only need yearly appointments. Crazy!

It amazes me that Lauren is doing so many typical things. She repeated "bub" today twice when my sister was trying to get her to say "Bubbles" (my kids call her Aunt Bubbles or just Bubbles). She's trying to crawl. She took all of the wipes out of the package today and was trying to eat one when we caught her. Her whole head was wet from the wipes! She is waving at everyone now.

I've said it before and I'll say it again. I can't believe I was sad about her! I know it's part of the process and that it's totally normal. But nothing about her is sad, she is amazing! Greg took the kids to Costco while I slept today. A man came over to them and asked about Lauren and said she was really beautiful. Greg noticed a little later that his daughter also had Down syndrome! I love meeting other Ds families. I wish I'd have been there! I think we need a secret handshake to alert other Down syndrome families that we're part of the club!

See, she's already helping with the laundry!

Oh, hey! Just waiting to show the cardiologist how cute I am!

Tuesday, December 11, 2012

One of those days

Someone please, remind me why I decided to have children?

Yep! It's been one of those days. Ryan has told me repeatedly that he doesn't like me anymore and that he'd rather have Daddy at home.

Lauren, as an after-effect of her 3 shots and bloodwork yesterday, hasn't stopped crying pretty much all day.

Thankfully my mom is AMAZING. She came and got Ryan and took him to Coscto at precisely the same time that Lauren fell asleep! YES! So I'm drinking hot chocolate and mentally regrouping. Too bad it's not socially acceptable to drink vodka straight from the bottle in the middle of the day. (Kidding! I would never drink vodka. Tequila is way better.)

Is it bedtime yet?!

See how innocent they looked last summer?? Lies, I tell you! All lies!

Monday, December 10, 2012

9 month check-up

Today was Lauren's 9 month well visit, a little bit late. She'll be 10 months on Wednesday.

She's doing really well! The pediatrician said she's growing fantastically. I will never get tired of hearing that!

I asked about the crazy amounts of spitting up going on. She said we could stop fortifying her formula (it gives it more calories but can be hard on the stomach). We also got a prescription for Zantac in case it's reflux. She said if neither of those things work we can look into a milk intolerance. FINGERS CROSSED it's not that. It would mean switching to soy formula, which is constipating. Not five minute ago Lauren screamed bloody murder while pooping because I forgot to give her prune juice this morning. I'm hoping to avoid anything that might make her even more constipated.

I was worried because Lauren barely grew at all, weight wise, since her last appointment. She was 15.7lbs and now she's 15.9lbs. But she did grow an over an inch an a half! She's holding steady in the 40th to 50th percentile for both height and weight on the Down syndrome growth charts. There's some discord about using the DS charts or not but our health system chooses to use them. Lauren's head circumference is 16.2 inches. Tiny! Not even on the typical charts. Her doctors aren't concerned because it's always been small.

It's so wonderful to hear how great she's doing from the doctor. I LOVE it!!

And our pediatrician had some very encouraging words for us today. Her daughter is in high school and is on her school's gymnastics team. On a team they frequently have meets against there is a girl with Down syndrome. She's a junior in high school and she's pretty good! Our pediatrician said the girl is really flexible which probably helps her out and that gymnastics has probably been great for her strength! She said both teams always cheer for her and encourage her. High school girls can be pretty cool, huh? I'm so excited to hear of these kinds of stories!

Lauren's been pretty fussy since her appointment. She had 3 shots plus she had to get her blood drawn. Blood draws really stink for her because her veins are so little. Today was no different :(

Saturday, December 8, 2012

Who has the smartest kid ever?

This girl!

We FINALLY decided that Ryan needed to give up his pacifier, he will be 3 in a couple of weeks. He was only getting it at night and nap time. He chomped a hole in it and it wasn't safe. And he didn't want a new one.

So last night (while I was working) we decided to get rid of it. Greg showed him that there was a hole in it and they threw it away together. He slept his normal 10ish hours of sleep with no crying!! Nap time has been a bit of a challenge today but that's to be expected.

Go Ryan!!! And go Greg!!

Monday, December 3, 2012

Giving back

Today I had the opportunity to teach Lauren the importance of giving back.

Luckily I had a dollar in my wallet, I don't usually carry cash. We got to give a dollar to the bell ringer for Salvation Army while grocery shopping! Ryan was at home napping. Lauren was not super impressed with the whole concept, but she'll get there.

And our streak of weird happenings while grocery shopping continues. I thought we were past this since it happened every single time we went grocery shopping when Lauren was a tiny baby. Today was baby girl's first time sitting in the shopping cart! We got her a new Taggie shopping cart cover (for Christmas. I am horrible at waiting!) and she had on her new purple pea coat and was sitting up, waving at people and generally being amazing. This woman goes, "Is your baby 2 months or 3?"

Really?! What 2 or 3 month old baby do you know that is sitting up, waving a rattle and waving at other shoppers? She must've had some pretty smart kids! I get that she's little but really. We were just asked yesterday if she was about a year old, which is much closer to the correct answer. People are weird.



On a serious note: Please pray for my husband's family. His uncle passed away suddenly from a heart attack on Saturday while mountain biking with a friend. He was 52 and extremely healthy. He leaves behind an amazing wife and two beautiful teenage daughters, as well as several siblings and his parents. My father in law is heartbroken at losing his brother. Please, please, please pray for this family. They needs God's love and healing now more than ever.