Thursday, March 21, 2013

Happy WDSD!

A quick post before the feeding specialist shows up!

This is from my facebook, plus a bit extra because we always deserve a little extra.

Today is World Down Syndrome Day! Many people are doing "Who I Am" posts, but Ada isn't even 11 weeks yet. I'm still learning who she is, like any parent of any newborn. That's who she is right now. She is a baby, like any other baby. She is loved by many, many people! People with Down Syndrome are people that deserve as much respect as any other person. That's what today is about, but it doesn't stop at today and it doesn't stop at people with Down Syndrome.  Everyone deserves to be accepted!

I should include a little bit about Ada though.  Ada touched my heart before she was even born.  She has taught me so much about life and about myself.  She is my little girl that loves to stare and smile at me rather than eat sometimes.  I sometimes get frustrated when she won't eat as much of her bottle as I think she should, but when she just smiles at me, I forget all about that frustration.

Ada's bow says Peace, Love, Awareness!  I think that's a good tagline for today!

Friday, March 15, 2013

Secret Tips for a Moms with "2 under 2"

I decided I should start recording any secret tips I learn.  I learned one today, so here's tip #1.

Bath Time (for me)

Getting a bath/shower when you have two little ones is hard, especially when I have to give Ada a bottle and pump during Brady's naptime.  Today I learned something that I hope will continue to help me get clean if I need to.  The best option is to take a bath with your toddler, but I've tried that with Brady and he has not been happy about it.

Today, I got Ada to sleep and took Brady into the bathroom with me.  I made myself a bubble bath and blew the bubbles at him and after that the bubbles amused him for the rest of my bath.  It did get messy though, so in the future I will make sure he isn't wearing anything but a diaper.  He has been so happy ever since getting a bit of bubble and water time. Yay!

Thursday, March 14, 2013

Therapy and other concerns...

I see so much talk about therapy lately that I can't help get worried sometimes.  I'm a natural worrier.

Ada had her evaluation a few weeks ago and the EI program here said that she did not need therapy yet.  They will re-evaluate her in 90 days.  She will be almost 5 months old at that point.  At first, I thought this was for the best.  Right now, Ada sleeps almost all the time.  She has no real routine and so I find the best moments to work on tummy time and other things with her.  It requires some skill to find a time when she is awake, not too hungry, and not right after a bottle.  I admit that I don't even do tummy time every day.  Some days it is just enjoying that period where she is awake and happy.  She's really good at staring contests.

Then... I see everyone else talking about therapy for their newborns that have Down syndrome and I start to feel like I'm doing the wrong thing.  Maybe I should be pushing for more therapy?  I'm not sure because she can hold her head up for several seconds at a time now.  She can roll over from belly to back to get out of tummy time (as long as she has her arms under her).  She pushes against my hands with her feet.  She will make great eye contact and give us an occasional smile even.  She has even laughed a bit in her sleep.  Honestly, I don't remember when my son did these things because I never really took note.  I only feel like I'm supposed to note these things with Ada because there is this extra stress of THERAPY!  I think I will bring it up at her next appointment with the feeding therapist and her next weight check with the pediatrician.  Maybe they will set my mind at ease or tell me that I should be pushing for therapy.

In other worries, here is a big one....


Not just for Ada, but for Brady too.  I try so much not to worry about it because the pediatrician isn't too worried about either of them yet.  A little background here is that I am small (5'0" and under 100 lbs), my husband is small (5'4" on a good day), so babies are small.  Brady is 22 months.  I believe he weighs around 20-21 lbs and he is 32.5"-33" tall.  Since he was 4 months old, he has been barely on the growth chart, but he is growing.  He is in the 1%.  The doctor says he will just be small.  I only hope that the trend of growing continues.  Growth hormone deficiency is a concern of mine because I had it and so did my husband's brother.  I'm not sure if it's genetic or not (not enough research because it's rare).  Ada was born at 5lbs and 17", so another tiny one.  She is growing, but with her cleft palate concerns, we will have to keep watching it.  I find myself constantly worrying about how much my kids eat.  I don't realize how small Brady is until I see him around kids near his age.  Today, we met up with a friend who has a daughter that is about 16 months old.  She was right about the same height as Brady.  Hopefully, his doctor will put my mind at ease at his 2 year appointment. Until then...I worry.

Wednesday, March 6, 2013


Every so often, I start thinking about Ada's life and her future.  There was a time when I would get sad thinking about this, but now I don't.  Really, it comes down to how I never really thought much about "the meaning of life" before I found out I was pregnant with a daughter with Down syndrome.  After that, I thought a lot about it.

Mostly I think there isn't one meaning of life.  Everyone's life means something different, but... I think the most important thing is happiness.  I know that Ada can have that.  Happiness is possible whether or not someone has an intellectual disability or physical disability.  I don't think this is coming off sounding as enlightening as I had hoped, but that about sums it all up.

You can't put value on a person's life.  You can't say one person is more important than the next because, in reality, we are all pretty insignificant in the grand scheme of things.  My life isn't going to change the life of the entire universe.  I will touch as many people as I can and I plan to teach both of my children to do the same and not to worry too much about the rest.  Just do whatever it is that makes you happy and your life will have meaning.  I will do my best to make my children happy and to teach them to always be respectful of others.

Speaking of children, Brady just woke up!  Time to continue the day.

Saturday, March 2, 2013

Long Time, No Post!

Things have been so hectic and I haven't had much time to sit down and post.

Ada was in the NICU for 2 weeks and then home for 11 days before we went to the ER worried about her breathing.  Turns out she had RSV.  That was a rough 8 days in the hospital, on oxygen, not eating well, so they stuck her many, many times trying to get an IV.  Then after a few days with the IV in, she got a red spot at the site, so out it came.  At least she was eating well by then.

She's been home for a few weeks now, but we have had family visiting, which is why I haven't been great about updating.  I promise to try and update more often now that she's here and things are (hopefully) calming down.

Until then...