Rare Disease Day

Today is National Rare Disease Day. On my Instagram stories I opened up a little more about my sister and her condition and asked if anyone had questions. I'm posting screenshots from some of those questions here on my blog. I hate she has this disease and I'm grateful for the ability to talk about it in order to bring awareness to this awful life ruining disease.

*I realized after that the picture of Addie was actually taken at Shawn's funeral. Different uncle that passed away just three weeks after uncle Eddie.

All About Our Babes

Baby girls I love you so so much. I didn't do the best this time around with keeping track on what happened every single month individually. We were just trying to keep you sisters alive with the little sleep we got those first few months haha. You both have been such a joy though these past twelve months. I'm still wrapping my head around the fact that you girls are one years old! Happy birthday Ryles and Quinnie!

Here are some things about them that I just don't want to forget.

First 12 months for Rylee and Quinn:

One month - They slept alllll day. We wake them up for feedings every 2-3 hours throughout the night but I bet they would sleep longer stretches if we'd let them. Since they're preemies if they skip a feeding they don't have enough energy for a full feeding at the next cycle so we have to stay on top of it and help them by waking them up ourselves. It's exhausting. They also started napping in their own cribs this month.

    Stats: Rylee 6 lbs 14 oz

              Quinn 7 lbs
Two months - They sleep in four hour stretches before we wake them to eat at night. Rylee had an ultrasound on her hip and will need another one soon because the results didn't come back normal.
     Stats: Rylee 8.8 lbs (3.2%)

               Quinn 8.8 lbs (3.2%)

Three months - Made the switch from newborn clothes to 0-3 size clothes. Quinn discovered her fists and now loves sucking on her thumb. Quinn gives smiles freely while Rylee will jibber and jabber away. Rylee was seen by a pediatric orthopedic and was cleared for hip dysplasia for now! Both girls have consistently slept through the night since April 26th!
Four months - Quinn still loves her thumb and it's the cutest thing ever. They both love when Daddy sings Hello by Lionel Richie and will smile so big every time. They went to the zoo for the first time and have also recently decided they prefer the bottle over nursing because it's easier for them. Both are trying so hard to giggle but haven't quite gotten there yet.
     Stats: Rylee 11.8 lbs (6.9%)

               Quinn 12.4 lbs (13.8%)
Five months - Have still slept through the night since April! Finally graduated from 0-3 month clothes. Rylee is getting really close to rolling over but hasn't yet. Quinn has twice but hasn't in awhile. Both are rockstars at tummy time and holding up their heads.
Six months - They have officially switched to full time bottles. They have been supplemented with a mix of pumped milk and formula for awhile now. They both roll over all the time and Quinn especially loves doing it during diaper changes. Both girls says Mama!
     Stats: Rylee 14.6 lbs (21%)

               Quinn 15.1 (29%) 
Seven months - They really enjoy baby food and being outside. Still sleep through the night consistently since four months old. They full on laugh and are more aware of each other.
Eight months - Both girls are now sitting and scooting around. If there's something they see on the floor they'll get to it. They both dealt with croup and bronchitis but are feeling better. Rylee had her last pediatric orthopedic appointment today for her hips and she's looking great with no issues!

       Stats: Rylee 17.1 lbs (32%)

                Quinn 16.7 lbs (27.3%) 
Nine months - They both were sick again a lot this month and currently both have ear infections. Once they started teething and getting sick they broke their sleeping through the night streak which has been rough. They have hit cute milestones though such as clapping, waving and now saying Dada. They are definitely more aware of each other now and try to make the other baby laugh which is the best thing to watch.
Ten months - They are better at holding their own bottles which is a game changer around here. Their scooting around is full on crawling and they are fast about it. They have six teeth. After a long time with zero teeth they started growing them like crazy the last two months. Rylee is pulling herself up to a standing position and has started walking along furniture. Quinn loves being held by Mama and will give our smiles more freely. Rylee makes you work for smiles but she's also more willing to be held by people she doesn't know where as Quinn is way more hesitant with that. Both babies prefer real food vs baby food and we've stopped buying those baby foods and just feed them what we're eating now.
Eleven months - Rylee loves to walk with her push toy. She also discovered today how to stand up unassisted. Quinn has started walking along furniture now but has no interest in the push toy because it moves too fast for her.
Twelve months - We all survived their first year!! 
     Stats: Rylee 19 lbs (37%)

               Quinn 19 lbs (37%)

List of Rylee's current words:

Mama

Dada

Grandma

List of Quinn's current words:

Mama

Dada

Hi Dad

My super talented sister kept up with tradition and made both of the girls their own birthday boards.

ALL ABOUT RYLEE

Her Favorite Foods- Raspberries, Blackberries, Nuggets and French Fries

Her Favorite Shows- N/A
Her Favorite Songs - Hello by Lionel Richie

She Can - Stand unassisted, walk with help, fake cry, clap and wave.

She Weighs - 19 lbs

She Stands - 27.5 in

Teeth - 8 teeth

Nicknames - Ryles, Rye Rye, Smiley Rylee, Rylee Mae and Froggy

She Loves - Sink baths, being teased, and the stairs
She Dislikes - Getting her ears checked by the Dr

ALL ABOUT QUINN

Her Favorite Foods- Blackberries, Bananas, Cheese, Avocados, and Quesadillas

Her Favorite Shows- N/A
Her Favorite Songs - Hello by Lionel Richie and Twinkle Twinkle Little Star

She Can - Shake head yes or no, clap, wave, and climb stairs

She Weighs - 19 lbs

She Stands - 27.5 in

Teeth - 8 teeth

Nicknames - Quinnie, BBQ, Q, Quinnie Rue and Grinny Quinnie

She Loves - Sink baths, the bathroom, food and Mama
She Dislikes - Sharing Mom's lap

It's been an amazing year being their mom. I lucked out with the perfect pair of babes. They are the most patient easy going little humans and I can't believe I get to be their mom. I love them both so much and I'm so glad we get to have them be the cabooses to our family.

Happy birthday girlies. We love you so much.

First Birthday Letter To Miss Quinn!

Dear Quinn,

Happy birthday Miss Quinnie Rue! You have the biggest smile and I love it because you smile with your whole face! You love to snuggle and have claimed my lap as your spot. You get a little protective of your spot and it's the sweetest thing ever because you definitely make me know that I'm your person. You're a mama's girl for sure. You'll sometimes let other people hold you as long as you can still see me and I'm not far from you. 

You love looking out the window and would be outside every second if we let you. I absolutely love having you around. We're so blessed that you are the bookend to our family. I can't even imagine not having you around, so thank you for coming when you did. You are pure sunshine and so easy going with a very calm demeanor. As long as you have your crib naps, food and mom snuggles you're set and as happy as can be.

I love you so much and can't believe your birthday is finally here and you're a one year old! I'm not ready to call you a toddler just yet so be prepared to have me call you my baby for a little longer. I love you and Happy Birthday Quinn!

Love,

Mom

 

First Birthday Letter to Rylee Girl

Dear Rylee,

Rylee Girl! You're a whole year old! I love you so much. You have been so much fun. You sometimes remind me of baby Addie and I can't wait to watch you continue to grow. You're very curious and not really scared of much so far. Except maybe walking on your own. You have been walking along furniture and with your push toy for months now and you can stand unassisted like a pro but when it comes to walking with no help you are a little hesitant. That's okay though! I'm not in a huge rush for that milestone anyway.

I wish I could just bottle your cute little self up and keep this season of life longer but I know I can't. You love people and everyone loves you right back. You don't seem to have a favorite between your dad and I and you're content in anyone's arms. Truthfully if you could choose you'd rather wander and explore way more than to just sit still. I should put a little bell on you to keep better track because one minute you're right next to me and the next you're off exploring a different room. We have to have the door leading upstairs closed at all times because the second you see it open you rush there to climb the stairs. You love it so much. You also LOVE music. You'll drop whatever toy you're holding so you can dance. It's hilarious and adorable. Just like you.

You and Quinn go back and forth on who seems to be the more take charge dominate twin. It used to be her but currently it's definitely you. You both are so much fun to watch. I don't know what we would do with out you. Thank you for being in our family. Happy birthday Rylee Girl!

Love,

Mom

 

Twinkle Twinkle Little Star Party

The babies are one! We survived this year! They survived this year! We all did it! Haha in all honesty we got really lucky because these two girls are the best babies ever. They weren't as hard as we imagined twins would be. Knock on wood but I haven't had a moment where both would be crying at the same time. They usually take turns which is awesome because it's like one will wait to cry until the other one is already comforted and at peace. It's very thoughtful of them haha. They are the best eaters and the best sleepers and we are truly blessed with their calm personalities. I'm sure things will really get challenging when they are walking and running but for now we've seem to adjust to every milestone so far. I still can't believe they were born a whole year ago. It seems like it went by so fast and yet it also feels like that happened forever ago. My baby girls are one years old. 

I decided on the theme "Twinkle Twinkle Little Star" because it says 'twin' in twinkle and I couldn't pass up that theme. It turned out really cute. Aide came over the night before and helped blow up some balloons and then she made an arch for their birthday party. She was incredibly helpful. 

Aide also brought so many party supplies, including little birthday party hats, and had so many ideas for decorations. It was amazing. Another person I'm super grateful for is Jill. She started handcrafting some decor weeks ago in preparation for today. She loves parties and always goes all in for her kids' parties and she put in the same effort for Rylee and Quinn. We're really lucky to have had her with us. Both Jill and Aide came early before the party started and basically threw it all together. Seriously I didn't do much. At one point I even left to pick up the pizza for the party because they had it all under control. They were definitely in their element. Thank you Aide and Jill! Pollyanna also made birthday boards for both girls. She's now done this for every single one of my kids and it's definitely something I cherish. Thanks Pollyanna!

This is the last first birthday we'll have to throw and it turned out so well. We had most of Danny's family there and some of mine which was great. Giovanna and Leo even drove all the way from Idaho to attend and then they drove right back on the same day. That's some impressive support. Danny and I both have some pretty great families and I'm thankful for all of them.

Rylee

Quinn