Throwing Out the Charts

When I was pregnant with David, one of the first things I did was sign up for Baby Center’s pregnancy updates. It was really cool getting the newsletter and seeing how your little one is growing and how big he must be and what I should be doing etc.  Then when David was born, that newsletter turned into reminders of milestones that David should be hitting.  That newsletter became annoying and I got worried and paranoid.   I talked about it with friends and they agreed that that newsletter gave me so much unnecessary grief and so I hit unsubscribe. Peace at last!

When I got pregnant with Noah, I didn’t sign up for the newsletter anymore. I knew what to expect anyway and although there are apps and pregnancy trackers nowadays I didn’t install any of them. It was my 2nd pregnancy and I kinda knew what I would be going through, right?

Well, no. Someone up there had other plans.

So on that fateful Friday morning of Sept. 14 2012, I delivered Noah via emergency c-section. Our little one whose growth was always 2 weeks behind suddenly was 4 weeks behind and the perinatologist told us that I had to deliver now or I could lose Noah.  I don’t think any newsletter or pregnancy tracker app could have ever predicted that.

Noah, whose due date was Oct. 25, was born on Sept. 14, 2012. 6 weeks early. His chances of survival was placed at 90 percent. The fact that there was a 10 percent chance of him not making it still makes me cry to this day. That awful awful statistic. I still shudder at the thought.  Blech erase erase erase!!!

4 days into Noah’s confinement at the NICU, our neonatologist told us that she suspects that Noah might have Down syndrome. I kinda knew that she was going to tell us that because I our OB told us that Noah’s nose looks a little bit different but he doesn’t have “low set ears”. Dan also told me how Noah’s doctor looked at the palm of his hand to see if he had a single palmar crease (Dan does).  I googled “low set ears” and single palmar crease and Google gave me Down syndrome.

When we got Noah’s Karyotype results which confirmed that he has Trisomy 21, we were set on a course for his Early Intervention program which included therapies to address the eventual delays that Noah is expected to have. The delays are due to hypotonia, or low muscle tone which presents in all people with Down syndrome. The delays mean that although Noah will crawl, sit up, creep, walk, run, jump, etc but it will be in his own timeline and he will need therapy so he can be strong and his body will be ready to do all these fun things that typical kids do. Noah does a lot of ab workouts so he could stabilize his trunk and core. This kid has better abs than me actually.

Noah is now 11 months old but his corrected age puts him at around 9 or 10 months.  He can now crawl army style, roll over and pivot around the bed. He’s had good head control from a few months back and he is also now able to stabilize his trunk so that he can sit up for more than 20 seconds now. He can also grasp and play while he’s sitting up and doing tall kneeling.  I love that his PTs (Teacher Yo and Teacher Vince) are constantly challenging Noah so that he can go beyond what he can do now. It is HARD work and Noah babbles more during his exercises (reklamador?! haha).  Noah has PT twice a week and will be starting Occupational Therapy to develop his fine motor skills in a week or two.

The things that I saw David develop on his own are things that Noah is working sooo hard on. It’s not easy (and fun) doing PT exercises but it is the best for Noah. What makes PT fun are Noah’s teachers. They are just so positive and optimistic about Noah and the hard work this kid takes on. A parent needs to hear that. As much as Noah needs the encouragement the parents need to know that the path they’re traveling on is on solid ground and that there is an assurance that they will not be lost.

So where is Noah is now? Kids with Ds reach their milestones different and as you can see below, the range is wide and generous.

To be honest, just as I didn’t look at charts with David, I don’t look at Noah’s either. I know the range but I don’t refer to it and see where Noah is and compare what he can and cannot do. Also, charts like these measure deficits. Yes they are essential in creating programs and next steps for Noah but I would rather that Dan and I work with Noah’s team to build on his strengths and the things that he CAN do.

There is no rush for our little man. He was already rushed into birth and that’s enough rushing I think for now.  Our fellow parents at DSAPI have told us that they will be able to do all the things that typical kids can do but it will take time and double the effort for our children. That’s why when Noah hits a milestone, Dan and I can’t help but cry happy tears because Noah had worked so hard for it. Now Noah, is exploring, reaching out and going places (literally!).

We celebrate, we cheer on. There will come a time when we have to measure him up to a chart again (I dread Dev Ped visits because of this but that’s for another post) but right now, Noah will do what he can and we will do our best to keep up with him.

 To read more about our new normal, click  here

Do you have questions about Down syndrome? You can comment below or email me at manilamomy(at)gmail(dot)com and I will try my best to answer you or have an expert look at your questions 🙂