Since starting this blog several years ago, I've been asked a lot of questions. Here are the most common...
What did you do to make Ellie's speech so strong?
I have a friend who offers a reminder that babies aren't vending machines. What you put in isn't always what you get out. Speech is Ellie's natural gift. She learned that if she asked for things, people would bring them to her. She has a mom who talks a lot. She did traditional speech therapy and we used the DownsEd See and Learn program. We aim for a language rich home and we own a lot of books.
But I always go back to the same thing. Speech is Ellie's natural gift.
Is Ellie high functioning?
Down syndrome is not a spectrum disability. In other words, you don't have it a little or a lot; Down syndrome is either present or it isn't. (The exception to this is mosaic Down syndrome which is extremely rare and which Ellie doesn't have.) So Down syndrome is all or nothing. But just like in life with typically developing children or adults, people with Down syndrome have strengths and weaknesses. Thus, the question of "high functioning" is only as valid as judging ANY child by their level of functioning, or for that matter, any adult. For example, I would call myself "high functioning" compared to my peers in reading, photography and running. I would call myself lower functioning in spelling, hand-eye coordination, and musical talent. In the same way, Ellie has specific gifts. She has a relative strength in verbal skills and she has poor balance. She is great with animals and has not-so-stellar fine motor skills. A similar list of strengths and weaknesses could be made for any child.
What was your experience with Ellie's duodenal atresia?
The double bubble sign on the ultrasound was picked up early as a possibility, and confirmed around 26-28 weeks. Seeing two "bubbles" in the stomach tells the doctor that a stricture or blockage is present. While that can be diagnosed via ultrasound, the details (in our case, malrotation of the intestine) couldn't be seen until after birth. Ellie had surgery when she was one day old and was released from the NICU at 3 weeks.
If you're facing this diagnosis, the following are actions I think will make your life easier:
* Determine where to deliver your child and where your child will be transferred if needed. We knew Ellie couldn't have surgery at our local hospital, so she was transferred via ambulance to Children's Hospital. We opted to deliver at our local hospital in order to have continuity of care for me, and to have surgery at Children's because that's where Ellie's cardiac team is based. Because I had an emergency c-section, I'm glad I delivered with my own doctors. Ask questions, tour NICUs, meet surgeons.
* Plan for your own recovery. Having a baby is not easy. Because of all the various health risks, I feel like most of the parents I talk to with Ellie's list of diagnoses have their child via c-section. Matt made me go home and go to bed every night. I didn't want to leave her, but he was right - I needed to recover. Friends planned to bring meals over 2-3 nights each week. This helped us spend more time with Ellie without stressing about dinner. Friends also brought groceries so we could bring snacks to the NICU. Hospital food gets old fast! Our friends used Take Them A Meal.
* Ask questions! I emailed a bunch of other moms to learn about their experiences.