3 March 2014

Adele Has Down syndrome!

Well, I'm back! Kelsey took over for a while and I am so thankful that she shared her story with all of you. She is an incredibly strong and beautiful woman.

Things are going pretty good here. Adele had her eyes checked and so far so good except that they cross a bit and then go back out. I was told that they would probably straighten on their own, if not, we will be getting cute little pink glasses. :)
We did our overnight oxygen test and I thought that she flunked, big time, but that wasn't the case. Adele's average was 93 and for her to be off of her oxygen, her average needs to be just above. We are just about there! I'm ok with her staying on oxygen at night because it is helping with her development and that is a good thing!

She is gaining weight and it's been quite steady. We are now over 12 pounds and she has little chunky cheeks! I love them! We started cereal and so far that been a success. I worried so much about feeding her solids, I thought that she would choke or just wouldn't like the texture. We've made her cereal runny, a little thicker and now we are pasty. Next, we are going to get going on peas! I'm telling you, I truly had no idea that my life would be consumed with feedings, intake, poops, appointments and more appointments. It's crazy how my two little girls differ so much but then on the other hand are so similar. We are so blessed that Adele's health has been great. We have had a few little bumps but I know that she has a good heart and no GI issues right now. It's crazy being a parent to a special needs baby. Is special needs the right words? A baby with Down syndrome? A little miracle? It's a lot of work and time and worrying and appointments, appointments that I had no idea that I would have to go to....I didn't know that she would need to go to the vision clinic, hearing clinic, get RSV shots.....and on and on and on. Nobody really told me that we would be doing all of this, but to be honest, going to these appointments has brought even more great people into my life.

I still have moments where I go "Adele has Down syndrome." I think about school......a lot. I think about her peers and her teachers and if she will be respected and included. I think about whether or not she is toward the mild end of the spectrum or if she is more moderate. I guess we won't really know until she is a bit older. When I took her to get her thyroid checked, the lab tech told me that Adele was mild. I kind of giggled a bit inside but also it felt good to hear it, but I also know that you can't tell just by looking at a baby whether or not they are mild or moderate. Right?? I don't know. There are just so many things that I don't know and part of me is happy that when things just sort of pop up, I do a lot better. Does that make sense?

When I took Adele for her immunizations, the nurse asked me if I went out with Adele, like leave the house. I may have mentioned this in a previous post, but I've thought a lot about it. It has never crossed my mind to not go out with Adele. I am proud to be able to tell others about our journey. I am not embarrassed that she has Down syndrome. I have never been ashamed or not want to show her off to others. I am so proud of her and her sister. I think Adele is just adorable and she has a beautiful personality. She is calm and sweet and funny, yet she is very fiery and spicy, just like her father. ;)
When we were at ACH for an appointment recently, I was in the elevator with another lady. She looked over at Adele and said how sweet she was and for the first time I heard "oh, she's a little Down syndrome baby." I almost choked. I don't know why I almost choked. I have never had anybody say that to me before. Ever. Nobody has ever walked up to me and said anything besides, how cute and sweet Adele is and maybe asked why she was on oxygen. All I said was "yes, yes she does have Down syndrome."
She then proceeded to tell me that she adopted a little boy years ago and he has Down syndrome.
Ok, she is a part of my club. I was ok then after knowing that she has a child with Ds.
So, I am not embarrassed or ashamed, I am proud but why does it bother me if somebody says that Adele has Down syndrome? I know that she does...I fully get it. I am not in denial. I accepted this long ago. I just don't want people to say to me "Oh, your little girl has Down syndrome." Feedback??
I guess it would be the same with Brinely, if somebody came up to me and said "oh, you have a typical child." That would be hilarious. Maybe it's just because I think of my children as just my children and nothing else.

This leads me to my next thought....I am so happy that many companies are now including all children in their ads. Target, Infantino, Miss Maven and many others. It is about time that companies see the beauty in all children. It's about time that we make a shift, a shift in the right direction, a shift toward being inclusive. I am happy.

Last thought before I leave you with a bunch of cute pictures!!!

Adele's Over the Rainbow Baskets - Down syndrome LOVIN has been doing awesome. We are over 4000 LIKES so far and still growing. We have enough beautiful items that have been donated by friends and family, to make at least 20 baskets. They will be filled with so much love, as well, I have included a list of resources that the family can access once they are discharged from the hospital. It's such an exciting project, with donations coming from all across the globe! Making a difference feels great! If you haven't already liked Adele's page, click on the link above and LIKE LIKE LIKE!! We can change the world together! :)

Bright eyed! :)

So cute!
Leave her for a second and she gets all acrobatic!
7 months :)
Adele's Baptism <3
Such a big girl :)
Booted her sister out of the Bumbo and took over!
Lookin' cute!


  1. That last picture is so adorable. She looks like such a happy baby. Glad to see you're back and doing well. You sound happier too :)
    Angela @ Time with A & N

    1. Thanks Angela. You know, if my kids are happy and healthy, I am happy! :)

  2. Ah, I have missed your posts! Loved the pictures...especially the acrobatic one, and the bumbo seat takeover one! haha

    So my thoughts on why you don't really like hearing other people blurt out Adele has Ds...

    I know the feeling you're talking about. It's hard to describe what it is exactly. It's not embarrassment or shame...But it's a feeling that kind of makes your stomach sink a little in the moment. It's because the second someone says those words it becomes all they see. It becomes all your daughter is recognized for. Suddenly instead of being this amazing beautiful little person with a spunky little personality...She is just another "Downs baby". It's almost like those words, Down syndrome, seems to strip something from our childs individuality. At least that's how I feel. I feel like suddenly they don't see my child for who he is...They see what they *think* they know about Down syndrome. Anyway, hope that makes sense...Not saying this is what you feel, just what I have at certain times.

    Oh, and honestly I am astounded that some one actually asked if you take Adele out!! lol, what do they think you do keep her locked in the closet?! People are idiots!

    1. Jenny!! That is exactly it! Thanks for telling me how I feel! ;) I want people to see Adele as just Adele. I had troubles getting out how I felt, but what you said is dead on! I am so glad that you gave me feedback, you know that when I ask for advice and feedback in my posts, it's directed to you! :)

  3. Hi Adele's Mommy!

    It took me 14 years to come to the realization of the blessing I received giving birth to my "special" child, my son Andrew. Special child, DS baby, Liver Transplant kid, don't worry about the titles now because it's quite overwhelming to be given the responsibility of caring for a miracle. I believe mothers like us are put in charge of these 'angels', if you will, to teach us something and to teach the world something more. Adele will be followed, she will be watched, and she will be given many titles in her beautiful life but the one that matters the most that will give you such joy is when you realize her title is 'teacher'. My 'teacher' inspired me to write a book about our journey; From Transplant To Transformation, The Journey Of A Mother Who Gave The Gift Of Life Twice. I wish you all the best with yours. Cheers!

    1. Hi Louise,
      Thanks so much for the message, I really appreciate it. You said it so perfectly, I think I may copy this and read it when we aren't having the best day. I wrote this post back in March....it's crazy how far we have come since then. Adele and her sister are both beautiful little miracles. I am going to check out your book. Thank you. Krista :)

  4. Adele is beautiful!! My sister-in-law Sally has Down's and just celebrated her 62nd birthday!! She lives in a group home with her friends and is the life of the party. We see her as often as her busy social schedule allows!! lol

    1. Sherry, thank you so much. I have to tell you that your comment made me smile and gave me a lot of comfort. Please give Sally a great big hug from all of us! xo