Thursday, October 31, 2013

Happy Happy!

Well, today marks the last day of Down Syndrome Awareness Month, and it's also Halloween! I am pretty proud of all that we accomplished for our first DSA month, and am so thankful for all that YOU have done as well :). Recently, the amazing school district where Joe and I both attended (and met), and where we both work now, has started participating in DSA month. Students and teachers have been making yellow and blue loom bracelets to sell within the district for a dollar each. So far, they have raised over $100, and want to donate it to the National Down Syndrome Society in Anthony's name. How wonderful is that? It is hard to express how much that means to our family. We are so thankful to be surrounded by such support and love.

To keep everyone updated...

Last Thursday (the 24th) we had Anthony's first physical therapy evaluation. I haven't had a chance to write about how it went until tonight. We were so excited to meet Anthony's therapist, and show her all of the awesome things he has been working on. She was very impressed!

Since Anthony was born, he has preferred turning his head to the right and not the left. He always looks that way during both sleep and play. We were a little concerned, and brought it up to the therapist. She said that he had a mild case of infant torticollis. She showed us some exercises to do with him after every diaper change to work on those muscles, just two pretty basic stretches. (You can see them in his PT video link at the end). She also told us that when Anthony lays on his back, we can place a rolled up dish towel behind his shoulders. Right now, he has difficulty working against gravity to bring his arms up from that position. The towel behind his shoulders will give him that extra support so he can lift his arms up to reach for toys and bring his hands to his mouth.

Aside from those two things we will work on now, Anthony is exactly where he should be! He has great stomach strength, and she did not notice a floppy disposition at all. Woohoo! As of now, Anthony will be receiving in-home PT every other week.

On Monday, Anthony was scheduled to complete his hearing test from last month that he did not finish. We were nervous because last time the technician told us that Anthony was "breathing too heavy" and she couldn't complete the test. We did not have high hopes for a calm, quiet baby this time either. But, Anthony proved us wrong. He did a great job and passed with flying colors. Go Anthony! Honestly, I admit that he was only calm this time thanks to his new found obsession: his Elmo stuffed animal.  He loves that thing. It is perfect size for his little hands and he loves to feel the fur on his face. Elmo is already starting to look pretty ratty from all of the love, and we haven't had him that long! I think this is going to be the toy that we will need to stock up on, just in case we ever need backup! This Elmo puts him right to sleep, and calms him down if he is fussy. It is pretty cute. I already found myself wishing I had another Elmo to give him today. He threw up all over Elmo, and then I had to wash him. A couple hours later he was fussy and I knew that Elmo would do the trick... but he was still wet. So, I had to sit upstairs and blow dry Elmo so Anthony could snuggle him and go back to sleep. Oh the life of a mommy!

Happy Halloween everyone! (We are having our family over this weekend for a Halloween party so we didn't have to drive all over tonight to show off Anthony's costume. Pictures to come this weekend!)

VIDEO-Anthony's first pumpkin patch visit
VIDEO-Anthony's Physical Therapy Evaluation
VIDEO-Anthony loving on Elmo
VIDEO-Anthony playing

Some pictures of our little man from the past 2 weeks:
The room where Anthony had his PT Evaluation

Taking a little food break from PT

Hi Everyone!!

Too cool for school! This was his first time wearing shoes !

All of his favorite toys
Loving on Elmo

Friday, October 25, 2013

3 Months

Date: 10/25/2013

Age: 3 Months

Weight: 12 lbs 2 oz

Height: 25 ¼ inches

Head Circ.: 39.4 cm

Eating: He eats 4-5 oz every 2-3 hours

Sleep: His bed time is anywhere from 10:30-11:30 and he sleeps all through the night. He usually wakes up around 8amJ.

Likes: “Tickle Monster”, the morning, his ring toy, holding and sucking on his Elmo stuffed animal, and watching Sesame Street on the I Pad

Dislikes: being in the same position for too long

Milestones: He is much more aware of his surroundings, he is cooing and “talking” nonstop, he puts toys/hands to his mouth to explore, he has much more head control and can hold it up on his own, he is laughing and smiling a lot, and he is showing beginning signs of rolling over J

Can you believe how BIG my nugget is! Look how he was almost the same size as his owl in the 1 month picture! He is growing up so fast!!

3 Month Old's Fun Day at the Pumpkin Patch!

Today (for Anthony's 3 month old "birthday") since Joe was able to hobble around, we decided to take Anthony to his very first pumpkin patch! It was pretty chilly outside, but we still managed to have a lot of fun! 

Monday, October 21, 2013

Be the Change

I can honestly say that at this time in my life, I am the happiest I have ever been. I love being a wife and a mommy to my son. Anthony has managed to change me in just three short months. He has opened up my eyes and introduced me to a whole new wonderful world that I wasn't aware of until now.

I wish I could say that I am always this happy, but I still do have rare moments where I am taken back to a sad place. Just a few minutes ago I was downstairs. The three of us were hanging around watching tv, and I was happy. Joe flipped the channel and an old episode of Keeping up with the Kardashians was on ( judging!). Kourtney was pregnant with Mason and she was on her way to the hospital. Her delivery was filmed. I watched as the camera man panned the hospital room... all of Kourtney's family waited in anticipation of the arrival of the new baby. They all were smiling and happy as the new mommy pushed out her son. I started to choke up and had to walk out of the room.

It seems horrible that I can't watch something so joyous. I couldn't bring myself to watch how happy everyone was, and how everything had gone according to plan for her. It made me sick, and a little jealous. But it wasn't my fault. It only took a split second of seeing her in the hospital bed to make my mind flash back to my own experience. More than anything in the world I wish I could have that day back, I wish I could relive it and love him as much as I do now. I wish the nurses didn't make it seem like a death sentence when they told me my son had down syndrome. I wish, instead, they had a little understanding that I was a brand new mom and just wanted to breathe my son in. I wanted to hold him and see the little face I had been growing inside for eight and a half months. It was if they took my son away and slapped a label on his head that read "hi my name is down syndrome." They listed off everything medically that could be wrong with my baby and kept saying "im sorry." When they finally handed me my son, all I could see was down syndrome. I didn't see Anthony. I was looking for the markers they described instead of enjoying Anthony's birthday. I don't have happy videos of my son being born with everyone smiling around me. They robbed me of that.

I want to be the change.

Maybe it's time for me to stop living in the past and start making a difference. I need to be the change in order for it to happen. I can't re-write my story, but maybe I can help by preventing another family from going through the same hell. I can picture it in my head.. how my day should have went.

Anthony's "fantasy" birth story

push, breathe, push breathe...

okay Kelsey, your son is almost here, one last push! 

The doctors put Anthony on my chest and I hear that wonderful cry that every mother waits for. I take a moment to look in to his beautiful eyes, and they take my breath away. Joe films as I have my first moments with my son. He wraps his little fingers around mine. We are one. I wisper happy birthday and that I love him more than anything else in this world. Joe kisses me and then the baby. The world has stopped and we become lost in one another. 

They take Anthony away to clean him up and Joe goes out to let our family in. Everyone is welcomed into the room and there is warmth. Anthony is passed around and showered with kisses and love. Pictures are taken, and this happy moment is recorded. 

Once everyone has left and we are taken to our new room, the doctor comes in to congratulate us on the birth of our new son. He tells us how healthy Anthony is and then tells us that he noticed some traits that Anthony has that may mean that he has Down Syndrome. We are shocked and upset, but he tells us that everything is going to be okay, because we have a son that needs our love. He is still our son, and no diagnosis will change that. He will tell us that Anthony will grow up to run and play, he will bring joy and happiness to our family in ways we could never have imagined. He will tell us that our journey may not be as we had planned, but it doesn't mean that it is a bad one. It is just different. We are lucky. Then he will ask us if we would like to be put in contact with a family that delivered a baby with down syndrome at this same hospital. He would even tell us that this family is willing to come in and bring their child to meet us. We agree.

This is where I want to come in. This is my chance to be the change. I think I want to contact my hospital and talk with them about how to deliver a diagnosis like down syndrome. I want other mothers to experience my "fantasy birth story." I want to be the family that comes in to talk to others about their newborn. I want to let them know that although some days may be hard... there is so much to be excited for. I want to introduce them to Anthony so they can see just how normal we are, and how amazing he is. I want to give them hope for their future, instead of fear. Maybe even give my information to the companies that do first-trimester testing to determine a down syndrome diagnosis. I have heard many horror stories that women were pressured to abort after receiving the positive results for down syndrome. It scares me that many couples may make the decision to abort because they are only told how difficult their lives will be. I want to change the horrible statistic that 90% of babies diagnosed with down syndrome during pregnancy are aborted. Families should know that there is an UPSIDE.

As of now, this is just a thought... a dream. I hope someday in the near future I will actually put this plan into action because I want to be the change.

Getting to know you

Growing up, I have always loved musicals and their songs always seem to pop in my head at random moments in my life. Yesterday I was laying with Anthony, and I started singing a song from The King and I.

"Getting to know you
Getting to feel free and easy
When I am with you, 
Getting to know what to say

Haven't you noticed
Suddenly I'm bright and breezy?
Because of all the beautiful and new
Things I'm learning about you
Day by Day. "

It made me realize just how much I love being Anthony's mom. He is growing bigger and stronger every day and keeps accomplishing different milestones. Recently he has been a lot more aware of things around him. He responds to voice, and has been making a lot of really adorable baby noises. I think, my favorite new thing that Anthony does is smile and laugh. I just cant get enough of his contagious giggle. Check out some of the new videos I posted from this past week.

Friday, October 11, 2013

Mommy's Day Out

There have been so many positive outcomes from starting this blog. For one, it has been a great outlet for my emotions. Writing has always been therapeutic for me, and it makes it even better knowing that my writing might be helping someone else too. Since starting my blog, I have received countless emails and messages from mothers/families reaching out to me. Some have shared their story, and some have just wanted to let me know how I have affected them in some way. It all makes it worth it! It is hard as a new mom to try and find time to write, but I want to keep at it because it has already done so much. I have to say that although I enjoy every aspect of this blog and the many outcomes from writing it, I think the best thing that has come from it is the connections I have made.

When my son was first diagnosed with Down Syndrome the doctors and nurses flooded me with resources. I was handed packets on top of packets of information along with numbers of people to get in contact with. In the beginning, it was all a little much for me. I admit that I never planned on calling any of those references or reading the informational material. I thought I could do it all on my own. I thought I had all of the resources I needed right at my fingertips...good ol' google. What I didn't understand at the time was how important actual support would be. Even thought I had been getting tons of support from friends and family something still seemed to be missing. I needed to talk to someone who got it, someone who understood first hand the roller coaster of emotions I was experiencing. When I wrote my blog I connected to a lot of readers that reached out and shared similar stories. But then something even better happened... I was introduced to two amazing mothers. Because of my blog, we were able to find each other; close in age and location. We were eager to meet in person. One of the girls was still pregnant at the time, but was still willing to get together. Turns out her baby girl wanted to come before we all met, so we had to put a hold on our plans :) . We ended up meeting this past Tuesday, at the park with our kids. Honestly, I was so excited. I couldn't wait to chat about our stories and experiences regarding raising a child with Down Syndrome. More than that... I couldn't wait to connect with other women my age that were mothers... period. Currently, I do not have any friends that have kids, so I wanted to be able to talk to someone about being up late, doctors visits, feedings, schedules, and all other things "mommy" that my friends without kids cant relate to just yet.

Turns out I was right, it was so nice to meet these girls. Talking to them I felt like I had known them forever. I think it might be because we have an unspoken bond. The three of us have been through something that not every new mother has been through. While each of our stories are different, the emotions we felt were very similar. They both experienced a Down Syndrome diagnosis for their babies while they were still pregnant. Even though their birth stories were different than mine, I found myself relating to almost everything they said. It was so refreshing to be open and honest and have those feelings validated. I am looking forward to many more playdates in the future :)!

Seriously, how cute are these kids

On another note....

My husband Joe was checked into the hospital on Wednesday for ACL surgery. He tore it playing basketball over the summer. He stayed the night, and that meant that I packed my bags and drove to my parents house with Anthony. Ha! For those of you who don't personally know me, I absolutely hate being alone, especially at night... in the dark... in a storm... with a house that makes creepy noises. So, Anthony and I had a sleepover at Mimi and Poppy's house. Then we went to go pick up Joe yesterday afternoon. I might not be writing a lot these next few days because I am taking care of two "babies" that are totally dependent on me. Hopefully I will be able to sneak away when they're both sleeping to get some Mommy-time.

Monday, October 7, 2013

A Weekend Full of Firsts

We have been non-stop since Friday! It has been a crazy jam-packed weekend to say the least....and the crazy is spilling over into this upcoming week as well! I finally found a quiet second to type this post. Hubby is asleep, and Anthony is cozy in his big boy crib. Now it's mommy's turn to unwind while typing to the faint sounds of Anthony's Baby Einstein crib music.


Anthony had his first sleepover at Mimi and Poppy's house! Joe and I had a wedding to go to (two great friends finally tied the knot!) and their reception was close to my parent's house. So, we decided that we wanted to enjoy ourselves and not have to worry about driving home. It worked out that my parents (and sister) watched Anthony while we partied the night away. We had so much fun, but honestly every few minutes we would either start a conversation about Anthony or check our phones to see if we had a new cute picture of our handsome man. We missed him so much! Luckily my dad picked us up and took us to his house to sleep the night with our boy. Anthony had tons of fun at his first sleepover, he watched sesame street on the I-Pad and slept in Poppy's arms.
Picture with my little man before the wedding

My handsome husband- the best man at the wedding :)
beautiful bride and groom! Such a wonderful wedding :)

Yummy Cookie Monster!

So Cozy in Poppy's Arms

Saturday Night

Anthony spent his first night in his big boy crib. Until that night, he had been sleeping in a bassinet next to my side of the bed. In all honesty, he should have probably moved to his crib a week or so ago, but it has been hard for me to let go! He is way too big for the bassinet now and needs more room to wiggle around. I knew it had to be done, so I packed up the bassinet and put it away. That moment was so sad, it's hard when he becomes too big for things (newborn clothes too) because it means I won't get to use them again for a while until we think about having more kids. Stop growing up so fast Anthony! Like any parent I love when my child sleeps through the night without crying, but that night I secretly wished that he might be a little sad so I could chalk it up to him missing me way too much. But, nope... he was perfectly fine in his big boy crib a whole room away from his mommy. He is such a wiggle worm too because I placed him with his head facing the left side of the crib... and when he woke up at 5:30 am he was completely turned around and his head was facing the right side. Crazy little man. I think he might just be fooling us all and walking around in his crib at night while we think he is sleeping ;).

VIDEO- First Night in Crib

Sunday- day

Anthony's first Buddy Walk! It was such an amazing day filled with lots of love. We prepped the night before by rolling up all of the team shirts and putting Down Syndrome loom bracelets around them. 

We had over 40 people walking with us! I honestly never could have imagined that much support, thank you so much to everyone that came out! Our team raised a total of $2,660 for CHOP's Down Syndrome program! Can you believe it?  That blew by our original goal that we set for our team of $1,000. Go Anthony's Avengers! I already can't wait until next year :). 
My superhero! 

Thank you everyone that came to walk with us!

Sunday- Night

Right after the buddy walk we zoomed home to make it in time for Anthony's first professional photoshoot. He is getting bigger everyday so I wanted to make sure I capture these moments. A family member on my side, Monica, does an amazing job taking pictures! She came over to our house with tons of props to shoot our little man. I had a lot of specific shots in mind, but Anthony had a really long day and didn't cooperate for too long. Hopefully some of the shots come out, I know Monica will work her magic!

The rest of this week...

Today (Monday) we had Anthony's second hearing test. He had one done while he was in the NICU, but he failed. We weren't too concerned with his failing score because the doctor said it was not his favorite hearing test and not many babies passed on their first try. So, we had to go back to the hospital we once "lived" at to get another hearing test done. I had no idea what to expect... in my head I pictured them putting miniature headphones on Anthony and asking him to raise his hand every time he heard a beep! What really happened was she put a tube like device in Anthony's ear. One ear at a time. He hated when she jammed it into his ear, who could blame him? She said that waves were transmitted from the device into Anthony's ear and they bounced back into the device where they were recorded. I am sure the way she explained it to me was much more technical, but since it is now 1:00 am .... that is all I really remember! The tricky part was that Anthony had to be completely still and quiet. HA! You try telling a cranky baby to not move and stop breathing so loud... yeah okay lady. Needless to say... we didn't get a chance to finish all of the tests required so we had to make another appointment. However, he did pass the two "harder" tests that she gave him while he was still sleeping. Wahoo! 

Good Night! 

Thursday, October 3, 2013

First Speech Evaluation

Today Anthony was visited by his first therapist! We are using Easter Seals, and so far we love them :). The therapist came out to do a feeding (speech) evaluation on Anthony. She was looking to see if he was on target for a two month old or not. Thankfully she was thrilled with how amazing Anthony was eating and using the muscles in his face! She kept calling him an "all-star"! We love to hear that, because of course Joe and I think that our baby is the absolute best at everything he does, so it is nice to hear that from a professional too. She was happily surprised by what he was doing! So, that means that as of now he does not need to receive weekly speech therapy. She is going to come back out in four weeks to assess him again and check up. We were given some exercises to do with Anthony daily to help him improve even more. If you want to check out the videos of her showing us the exercises you can either click the links below, or click the play button in the right corner of my blog. That button brings you to my you tube account where I post videos of Anthony often :).

VIDEO 1 : speech exercises
VIDEO 2: speech exercises

Wednesday, October 2, 2013

Down syndrome awareness month

My family showing support for DS with our loom bracelets that the special education class Joe works with made :) 

October is national down syndrome awareness month. To be honest, I never knew about it until Anthony. I just wasn't exposed to it. I feel like DSA month has gotten lost in the shuffle...over shadowed by other disorders and causes. It's not that I am saying other causes are less important, because that is not the case. Down syndrome is just so dear to my heart now because of Anthony, and I want to give it the spot light it deserves. I want to use this month to spread awareness.

It's human nature to be scared of the unknown. My dream is to open my reader's hearts and minds to the world of Down syndrome. When you look at my son I don't want you to see Down syndrome first. I want you to see Anthony for the amazing baby that he is. Don't put any limitations on him because he will grow up to accomplish amazing things if you let him. He continues to grow and show us just how strong he is each and every day. I want to show the world just how " typical" our life is. Anthony is a baby first, and that is exactly how we treat him.

Recently, when I told someone about Anthony having Down syndrome the first thing they responded with was "I am so sorry for you. I know someone that has a son with Down syndrome and I know how challenging they are." This is exactly why I am so happy to be raising awareness, even if I open just one person's eyes it will have been worth it. I would never want someone to feel "sorry" for me and my life. That seems to imply that my life is sad in some way. That couldn't be further from the truth. My life is full of happiness and love and it is all because of Anthony. I wouldn't change him for the world...but I hope that we can change the world for him.

So what can you do to help raise awareness? Well, you've already taken the first step. You've taken time out of your day to read my blog and learn more about raising a child with Down syndrome. Spread the word and we can reach even more people.