I'm not the last person who should be writing this, but I'm close. Also because I LOVE pictures, I'm going to add random pictures with captions. Yes, it will be confusing, but everything is better with pictures.
Things you may or may not know about Down Syndrome or really having a child with special needs based on our 2 month experiences. You need to know that NONE of these were on my RADAR and I read A LOT. Each case, child, and family are so very different. Imagine that... kids with Down syndrome are unique. ;) I think 1 day at a time is the best way to go. Remember, this is based on my Very Limited experience. I'm anxious to read this in a few years. :)
Things you may not know....
**Evaluation is a nice, neat code word for we are going to assess your child and tell you everything that's wrong with him. I had the bright idea to schedule his OT evaluation, PT, and ST evaluation on the same day. Which means I got to go from room to room and have them tell me everything that was wrong with my child in each different area. It was a VERY rough day. They have not learned the sandwich method: 1 Positive 1 Negative followed by another Positive, or maybe you just hear the negatives.PS: We LOVE our therapists! I'm in mourning because we had to change our PT for scheduling purposes, and I know I will love our new PT, but Amber rocked Cade and I's world.
Physical Therapy Pics
Cade has Physical Therapy and Occupational Therapy on Tuesday mornings. He gets a 30 minute break to nurse and get a diaper change, but this actually happened last week. :) He literally fell asleep on the therapy ball at the end of PT!! He's kind of hilarious!
2nd well child check we found out our RSV shot has not yet been approved by insurance and isn't in. These shots are $2500, and he gets 1 a month through March. I know you can do the Math, but that is $15,000 in 6 months.
We also found out Cade might have Craniosynostosis, which means his cranial sutures are closing too early which constricts brain growth causing developmental delays, extra fluid in the brain, seizures, and blindness. We are watching it closely. The treatment is cutting his skull open and make room for brain growth.
I can't wait for next month! :)
**Concern for getting sick is an entire new level. Sure, we used hand sanitizer or as it's called at our house, HANITIZER, but Cade getting sick could be a really, really bad thing. I should seriously buy stock in GermX or Bath and Body Works or maybe Clorox wipes. :)
My fear in writing this next part is offending people. PLEASE do not be offended!! I'm so ignorant!! Aren't we all on things we haven't experienced? Please Please do not take offense as this is a way of expression for me. A way of sharing things that are often too hard to share in person.
Comments that are rough that are not meant to be... (note: I am a sensitive person, always have been. Some of these things don't bother Jed at all, but he's hyper unsensitive. (it's a new term don't look it up.))
**Everybody knows or has a cousin's friend's Mom's Aunt who has Down syndrome and is just such a joy. (smile thank you for sharing) I know the reason this bothers me is that I want Cade to be known for Cade... his personality and not because he has Down syndrome. It's hard for me to deal with him being put in a box. I also understand they are trying to let me know that it will be okay, and that they also Love a person with Down syndrome, and that makes me happy.
**I feel judged. Please notice I said I feel... not that anybody is judging me. I worry because we haven't attended church as a family since Cade was born. Just when we think we can start, his shots don't show up and pneumonia starts going around!! However, if I run to the store, or take him in anywhere I feel like people are thinking well she's here. Notice I said I feel... No one has actually said that to me!!
*Are you adjusting to your new normal? or Once you get through this... Yes, I truly feel I have "come to terms" with Cade having Down syndrome; however, each new day brings a new hoop. These hoops will never go away just change. I'm so concerned about giving Cade every advantage he can possibly have.
I'm worried I didn't do enough Joint Compressions, exercises, mouth massages, torticollis stretches, eye contact practice, tracking practice to help him be as successful as possible.
My heart brakes at how hard Cade has to work to do things we never gave a thought to for the girls. I mean the kid has to do Core Exercises to strengthen his "pot belly" He's 2 months old. Don't worry Cade you and me both buddy! :) We do our Core Exercises together. Neither one of us are super impressed with the results at this point. :(
Working Very Hard in Physical Therapy.
.JPG)
Cade's favorite stretch... he fell asleep doing it! I'm not stretching him now just trying to get a pic to show daddy.
.JPG)
Claire clearly isn't doing it right.
**I can't believe we haven't been able to meet him. (hold him) I don't mind showing him to people. Quite frankly I love showing him off, and am doing it more. Just know, We're terrified!! Again, I don't think people understand that if Cade does get something respiratory it can be Very, Very bad. Cade's health is worth offending people. (sorry! love you. mean it.)
However....
Cade is a doll. We are all absolutely smitten. There is something very fun about having a baby at the ripe old age of 35. You truly appreciate the joys of having, in my case, 1 more. Not that you don't appreciate your babies when you're young, but something is just a little different. I realize it also comes with him being my 3rd and final. He is honestly the sweetest, cutest thing ever. (I know I'm not supposed to say that. It's annoying when moms brag.)
He fits our family perfectly...Proof...
Cade loves drilling wheat,
.JPG)
Bass Pro & 4 Wheelers
.JPG)
Wearing Overalls (thanks Brook)
.JPG)
Caps
.JPG)
and Friday night Movie Nights!!
.JPG)
I'm thankful I was in a Class within a Class situation as a teacher in Missouri, and understand IEPs, evaluations, and goals.
I'm getting to be a Genius at Acronyms!!
I'm glad we knew before Cade was born for the simple fact of understanding some of the language, and not being shocked for the random things they check for or Cade has.
I cry almost every time he MAKES EYE CONTACT & SMILES it is AMAZING! (He started last Wednesday!) We have worked so hard on eye contact, and then to feel he likes us too is a major bonus!!
We can't imagine our life without this Baby Boy and His Hoops!
We are honored to be entrusted with all of our children, and that we all have been entrusted to Raise Cade.
As a mother comforts her child, so will I comfort you... Isaiah 66:13
Happy Down Syndrome Awareness Month
