Wrapping it up.

31 posts in 31 days. 31 for 21.

Is anyone still out there (besides my mother, who informed me that she waits for these posts every night, hah!) and not bored to tears?!

By posting about the every day happenings in our lives, I hope I have illustrated how normal out life is. How at times Down syndrome does play a role, it isn't the main focus of the chaos around here.

Down syndrome awareness isn't just important during the month of October, and hopefully you will be back to see what we are up to in the months to come.

Now, for a few last pictures from the month.

Happy Halloween, y'all.

Inclusion...done right.

I am am whole hearted supporter of inclusion...done right. Inclusion in the special ed world is a huge buzz word these days. It is a word that can mean many different things depending on the ideas of the person using the word. An older post (pretty sure I have shared this before) on one of my favorite blogs encompasses so much of what I feel about inclusion; you can read it here.

We pushed for Charlotte to be in a typical preschool. We wanted her in a class with typical peers, some whom she will someday go to elementary school with. We believe this is the best choice for Charlotte, and for her peers. Inclusion is not just beneficial for children with special needs, it is beneficial to ALL kids. It teaches acceptance, tolerance, and appreciation of difference.

This video has some good information about Down syndrome and inclusion. I particularly liked the teacher interviewed at the end.

I am incredibly grateful we made the choice we did. Charlotte is in a good spot, with wonderful teachers and peers who are flexible and accepting.

The Grinding Years.

A wise man once told me (and continues to tell me) that ages 30-50 are the grinding years. Meaning that during this time of your life you work the hardest and play the least. Not to say that you don't enjoy life, but at times responsibilities may seem incredibly overwhelming.

When I complain to this wise man about the craziness of this life we lead, he often responds with, "You just got to grind it out, it will get easier."

I know he is right, and I try not to wish time away in order to get to an easier spot. I have talked often about how hard the past 6 months have been; though I don't want to overshadow the fact that even though it has been hard, it is worth every sleepless night and minute I devote to raising my children.

Today I blew off my entire to-do list. The laundry I started last night still sits in the washing machine and will need to be run through again tomorrow morning. I have work emails piling up, messages to respond to, and there is more toothpaste on the kid's bathroom mirror then there is in the tube. Nothing got done today. No grinding for me.

Kate and I bummed around the mall while Charlotte was at school this morning. We picked up Panera for lunch. I spent the afternoon watching "The Chew" and holding Jack while he slept, rather than putting him down for a nap and doing the above mentioned laundry. With the exception of taking Katherine to her piano lesson, I really didn't attend to any of my regular responsibilities. Mike made dinner while I was gone at piano, and when I returned, I quickly gathered up Jack and went and to meet my mom and aunt for dinner. While the conversation wasn't exactly uplifting, it was nice to have a change of pace from regular activities.

Tomorrow I go back to grinding. We all deserves a break every now and then.

Writer's block.

I  have got nothing tonight. Eek. Hoping a good night's sleep with help me come up with something creative tomorrow.

"What?! You have nothing left to say?"

"Oh no!!!"

Halloween Past

2010

2011

2012

2013

Trick-or-treat

It's hard to believe that last year during trick-or-treat Charlotte was so sick she didn't move off the couch, much less put on a custume. This year was a different story. 

She loved it. Walked up to every door and said "treat!" 

Then, when a treat was dropped in her bucket, she said "thank you! Have a good day!" 

It was a fun night. I love watching the kids having so much fun. The older kids made sure that Charlotte chose the gluten free option when it was available. I think she ended the night with about 50 peanut butter cups, much to her delight! 

Round two tomorrow. More to come. 

Pumpkin farm 2.0

The kids had off of school today, so we headed to another pumpkin farm with good friends. One can never visit too many farms in October, right?! 

It was a fun day--with the exception of Claire getting bit by a horse, Katherine being attacked by a group of crazy goats, Will accidently letting a huge pot bellied pig out of its cage, and Quinn falling off a big log and suffering from a bloody lip. All that happened in a 15 minute period; the rest of the day was great! 

Another busy day.

Some days I feel as if I blink and the day is over. Today was one of those days. It flew by. Older kids had off of school; Mis took Katherine on their birthday annual shopping trip, Charlotte had school, and the boys hung out at our house. 

My 8-year-old diva.

*****

This afternoon/evening I did a fundraising event with my Norwex business. The event raised money for Dravet syndrome if you are interested in learning more, check out this link. 

Wordless Wednesday: Snow?!!

FAQ: Gluten free edition

I get asked a lot questions about Celiac and gluten-free diets. I answered the most often asked questions below...please leave a comment if you have your own input and/or recommendations to offer!!

Does your whole family eat gluten-free?

No. However, most meals we eat as a family are naturally gluten-free. All the meat I purchase is naturally gluten-free (nothing marinaded, breaded, or pre-seasoned) and we only use gf seasonings and breadcrumbs (for breading and meatballs...a family favorite!). We eat a lot of rice and potatoes instead of pastas and breads. Obviously fruit and veggies are gluten-free so all our meals include a variety of those.

Mike and I and the older kids do eat gluten in some foods though. Charlotte has her own bread and pizza crusts, where the rest of us eat ones containing wheat flour. The older kids eat cheerios and other breakfast cereals (though when we have pancakes, I only make gf ones...the older kids don't know the difference--we like the bisquick brand) and some of their snack foods have gluten in them as well (pretzels, gold fish, etc.)

What are Charlotte's favorite gluten-free items?

When Charlotte was diagnosed with Celiac disease last October, we went crazy purchasing and trying every gluten free item we could get our hands on.

We quickly found out what a picky eater we had, and which products were good enough to make the cut. Charlotte's current favorite items are: udi's bread, udi's pizza crust, applegate gf chicken nuggets (we buy these three items by the case when they are on sale and freeze them...saves money, gf items are pricey!); she also loves her pumpkin muffins that Aunt Kate makes using glutino gf flour. 

Does Charlotte mind when others are eating things with gluten that she can't have?

Not usually. We try very hard to have similar items for Charlotte when she can't have what others are eating. When there is a birthday or celebration at school and they are having cupcakes or cookies, I bring in something similar. Same for family get togethers (though with Aunt Kate in the fam, there is usually a gluten-free cake at family functions :) ). At home, a lot of times we stick to ice cream for treats and celebrations, as all of our kids seem to prefer this anyway, and Charlotte can have plain ice cream with most sundae toppings (including whipped cream, her favorite). Sometimes we buy gluten-free ice cream cones as well. 

What is the hardest part of keeping Charlotte's diet free of gluten?

Hands down, eating out is the most difficult. Because of cross contamination concerns, Charlotte can not eat in restaurants. Even if there are gluten-free items on the menu, we can not be certain they are free of ALL gluten. Most restaurants have warnings that if you have celiac disease, it is not recommended you eat their gf items, as they can't not guarantee the items have not been exposed to utensils, deep fryers, and other shared surfaces with gluten. There is no picking up dinner for Charlotte, we have to make every one of her meals at home. We do keep quite a few convenience foods at home so we are able to do this quickly and bring it with us when we go out. Most Ode Ida brand fries and tater tots are gf, so we often bring those with some of her chicken nuggets if we are going out for a meal; chicken nuggets and fries are usually what the older kids are eating, so then her meal is similar.  

What happens to Charlotte if she accidentally eats something with gluten in it?

Unfortunately we found out the answer to this question a few months ago. Mike and I had a miscommunication and Charlotte ended up eating about a quarter cup of regular, wheat-filled mac and cheese. We didn't realize it until a few hours later, after Charlotte had gone to bed, when we heard her waking up, vomiting. After talking, we quickly realized what had happened. Charlotte continued to throw up for a few hours, though luckily, she felt better after that. Reactions to gluten in people with celiac disease is different in every person. Charlotte's reaction was pretty severe (a lot of people will get a stomachache and gi discomfort, but not throw up), which showed us that she will never be able to "cheat" and have something occasionally with gluten in it. 

Other celiac diesease/gluten free advice?

For Charlotte, we have had to cut gluten not only out of her diet but out of her body care products as well. Through trial and error we have found that it was extremely helpful for Charlotte's sensitive skin to change our laundry detergent, shampoo/body wash, diaper rash cream, sunscreen, and lotion to those that are certified gluten-free.  

I would love to hear from you...what are your favorite gf items? Pasta has been the hardest for us; Charlotte is not a fan of all the ones we have tried. Do you have one that you like? 

Sibling relationships

One major worry of a lot of new parents of a child w/special needs is how the child's disability is going to effect their other children. I know I had these fears, as did Mike. We often talked about how Down syndrome would effect Katherine and Will (and now Jack).

A few years ago, Brian Skotko, a MD and a Down syndrome expert, as well as the brother to a woman who has Down syndrome, did a study in which he surveyed 3000+ families and collected data about living with Down syndrome. You can read more about the study here, but one fact that stood out to me was, "88% of brothers and sisters said they are better people because of their sibling with Down syndrome." 

When Mike and I decided to have another baby after Charlotte was born, never did it enter my mind not to because of her disability. I do not worry about the impact Charlotte's disability has on my other children; I truly feel that even though at times we will face challenges others families may not, in the end we will all be stronger because of it. 

Sibling relationships are not static. The are constantly changing. It has been fun for me to watch Charlotte's relationships with her siblings change over the past three years. Here is a snapshot of where they stand right now.

Charlotte & Katherine
Katherine has always been and still is super maternal with Charlotte. K likes to be in charge and take care of Charlotte. However, Charlotte used to listen to Katherine and go willing with what was suggested; not any more. Charlotte and Katherine are similar in the fact that they are both very stubborn; so when Katherine wants Charlotte to do something that Charlotte doesn't want to do, Katherine is now met a resistance that wasn't there before. It has actually been kind of fun watching Charlotte stand up for herself...just don't tell Katherine I said that.

Charlotte & Will
Charlotte and her big brother have and have always had a very sweet relationship. She always greets Will with a "hi Will!" and a hug when he walks in the room. Will likes to goof around with Charlotte; wrestling and making her laugh like no one else can. They used to share a room, however, we recently had to split them up because Charlotte wouldn't let Will sleep. She would climb in bed with him, and as Will said, "look for my face and try to open my eyes!" I think she misses sharing a room with him, but they both need to be able to get a good night's sleep :).

Charlotte & Jack
Charlotte has learned from Katherine what is means to be a big sister. Charlotte's relationship with Jack is very similar to Katherine's relationship with Will when he was a baby. She loves laying next to him on the floor, holding on to his hands, and hanging on the jumperoo while he tries to jump. She has taken to calling him baby "Jackie"and right now, I can safely say she loves him to pieces. We will see if that is still the case when Jack starts to move and is going after her toys!

Charlotte is lucky to have her siblings, and her siblings are lucky to have her. We look forward to finding out what the future holds for their relationships. 

Pumpkin Farm 2013

Today we made our annual trek to the pumpkin farm.

As usual it was cold & rainy. It seems to be the forecast every year for our pumpkin farm trip.

Rain meant mud. The kids were covered in it by the time we were done, but they had a good time.

Proof that Jack & I were there ;-) 

Next weekend we carve....

One more.

Are you sick of picture posts yet? Well, you will have to endure one more. Right now, Katherine is in the middle of her first birthday sleepover, and we still have five giggling girls who aren't ready for sleep yet. I am hoping for more time to write tomorrow. 

Couple cute moments from today...

iPad with his sis...,

First bites of food...

Dance party. See if you can spot Charlotte, she had a good time hanging out with the big kids...

Late night.

So this is all you get.....

Big helper.

Important & Cute

Both of the things I am blogging about today are repeats from Facebook, so I apologize to all my Facebook friends! However, one is way too important and the other is way too cute not to share.

So, first. Too important.

I want to share with you a link to one of my very favorite blogs. Today's entry was phenomenal, and I urge everyone to read it. I feel that the author, a mom of two kiddos with Ds,  so eloquently put into words what many parents of special needs feel. I promise you won't be disappointed. You can read it here.


*****

Too cute.

Charlotte went on her very first school field trip today. She even got to ride a bus. There was a hayride, a story, a craft, and a fun little playhouse. This 3-year-old had a blast.

Very proud of her pumpkin. She carried it around all afternoon.

Bouncing back...slowly.

Did you notice my quick, no thought involved post yesterday? I apologize. I started a more thought filled post earlier in the day, but was never able to finish. I started feeling pretty crummy later in the afternoon, and by evening, while at work I was absolutely miserable.

I am not used to getting sick; Mike always tells me he is jealous of my immune system, as every virus the kids bring home, he gets and I don't. However, this time, even my immune system of steel couldn't escape the crud that has been going around our house. It probably has something to do with the fact I haven't slept for more than 2 hours at a time since May.

I came home from work burning up, with my first fever of my adult life. The baby was screaming and still needed to be fed. Mike took one look at me and knew I felt like crap. Considering he was just recovering from it himself, he could sympathize. I took the baby and fed him, and then promptly went to bed as soon as Jack was asleep. At that point, Mike took over for the night with the baby (Jack wakes anywhere from 3-5 times a night, and sometimes likes to stay up for couple hours at times, ahhh!), and let me sleep. I did wake up after midnight to feed Jack again, but it was the most I had slept in months, and man, I needed it.

I know this post has nothing to do with Down syndrome, and really little to do directly with Charlotte either. The purpose of my posts this month have been a little bit different than the awareness posts I have done in the past. Instead of reciting facts and statistics, and sharing Down syndrome feel good stories, I have tried to add more of basic "slice of life" posts.  (Plus, I figure if you want the stats, you can look back at the earlier posts on this blog!) 

When others find out I have four young children, one with special needs and another super needy infant, they often either tell me I am crazy (which sometimes I believe!) or ask me how I do it. My answer? A supportive, helpful, amazing husband who gets "it" and gets "me." I know it is hard to believe, but the last five months have been some of the most stressful of our married life; more so than even those after Charlotte's birth. So to sum it up, my best advice to surviving the craziness? Love & support, and an incredible patient partner.

Dryer

Happy, Happy!!

Happy 8th birthday to my eldest daughter! And happy healthy heart day to my younger daughter! Love you girls so much, crazy how much you have grown!

October, 2010

October, 2011

October, 2012

October, 2013

A curse?

Tomorrow is Katherine's birthday. My baby girl is going to be eight.

Three years ago on this day, I wrote this post.

Last year on the day after this day, I wrote this post.

I am starting to think this week in October is cursed! Mike and Charlotte have been battling sickness all week, finally starting to feel a bit better today. We spent the morning getting ready for Katherine's sleepover birthday party which she has been over the moon excited about for weeks. Mike and Katherine ran to pick up a few movies for tonight, and upon their return, I took one look at my nearly 8-year-old and realized she was sick. Pale as a ghost, and lower lip quivering as she told me her head and throat hurt and she was getting the same thing daddy and Charlotte had. Her eyes welled up with tears and she started sobbing when she realized her birthday party would have to be rescheduled.

In the grand scheme of things, compared to the topics written about in the above linked posts, having to postpone a birthday party due to illness is really not a big deal. It is still hard to see her so sad though. She perked up a bit after a nap and McDonalds shake, and we gave her a couple of her birthday presents a day early to take her mind off things.

Fingers crossed that me and the boys don't get this nasty bug as well, and that the others continue to get better.

Ugh.

This is my second time I have parented a child suffering from hand, foot, & mouth. Last time it was Katherine and she was 2. My thoughts about the freakin' disease haven't changed. It SUCKS. In my opinion, one of the worst common childhood illness a kiddo can have, as those mouth sores are awful.

Clingy, cranky, refusing to eat, and wrestling her to take any medicine. Sound like fun?

Ice cream for breakfast anyone?!

We acquired a new bed yesterday for our upcoming bedroom shuffle, and the mattress didn't quite make it upstairs yet. It has proved to be the perfect sick bed. Added bonus? Soph thinks it is a kick butt dog bed. 

Missy convinced me to get out and go for a walk this morning. I figured it would do us all some good to get some fresh air. I didn't think Charlotte would be up for the park, but would be happy hanging out in the stroller. She surprised me and insisted on playing for a bit. This was the longest she went with out whining and whimpering all day. 

Her diet today has consisted of mostly ice cream. She really wanted to eat muffins, and tried, but she would take a bite and then put it down realizing how much it hurt. Notice the nice line up of muffins on our living room carpet? You can tell she doesn't feel good as she would never get away with eating in front of the tv!

Thankfully Mike took pity on me and offered to have me take the older two kids out to dinner and to get party supplies for Katherine's upcoming birthday. I needed some time out of the house and was thankful for some time to catch up with my big kids.

By the time we got homeeee, Charlotte seemed to be feeling much better. She ate a banana before bed and was in a much better mood. She hasn't had a fever for a few days, and hopefully her increased appetite means the sores are feeling better.