How 'bout that title, huh? Pretty lame I must admit. Oh, well.
We took Lila to the geneticist yesterday. We were a little late with the visit- a lot late is more like it. Typically you're supposed to take your child with DS to the geneticist every 6 months until the age of 3, then scale back to once a year. The last time Lila saw the geneticist was when she was 6 months old. She was scheduled for an appointment when she was 12 months old but she was very sick that day and we had to cancel. There is a 6 month wait period for appointments. Given the fact that Lila was already being followed by a developmental pediatrician, an opthamologist, a pediatric dentist, a gastroenterologist, a cardiologist, a hematologist, an ENT, a speech therapist, a physical therapist.... okay, okay, you get the picture. Maybe it was wrong but we decided it was all a bit much. We decided to take a break from the geneticist for a while. Now that I think back on it I'm not sure why we decided to do that. We really, really like our geneticist.
When I was 3 months pregnant with Lila we were given an emergency appointment with her. We had just received the results of the amnio and our new OB thought it would be helpful for us to talk with her. She was absolutely wonderful. (We were so ignorant- even though at 11 weeks we had a nuchal with the result of a 20% chance of having a baby with DS- I had chosen not to do any research. I had accepted the fact that I was probably going to have a baby with DS but I was still trying to deal with the initial feelings at that point.) I remember asking the geneticist when we would know how much our baby would be able to accomplish in her life- she just smiled and said "At the end of her life, you'll know. Give her every opportunity to accomplish as much as she can and you'll be amazed at what she can do." WOW! After our first OB tried to schedule the termination of my pregnancy as soon as possible, this lady was like a breath of fresh air. Thank you God. That's exactly what we needed to hear. Hope. She also came to see Lila in the NICU and was very encouraging. But to get back to yesterday, she was excited to see us. Who am I kidding? She was glad to see Lila. She did make a comment that it had been a "long time." oops.....
After asking a ton of questions she was very pleased with our answers but more importantly she was pleased with Lila's progress. When she looked in Lila's eyes with the ophthalmoscope, she started laughing. "Somebody must take tons of pictures of this little girl- when she saw the light she started smiling like crazy!" : )
It is 10:00 EST and I must go to bed now. The steroids are making me a bit fuzzy so please pardon the fact that this post is all over the place.
Hugs~
Linda
P.S. I had to google the spellings of ophthalmoscope and gastroenterologist. : ) Just had to confess.
Terminate your pregnancy. I remember those days and some of the conversations. Now... I just can't imagine our world without Lila in it.
ReplyDeleteWow, I'm sorry about your back, Linda!! And I must say, I love Dr. Lewanda, too. I think all parents of children with Ds should visit a pediatric geneticist if they can--the information is invaluable, and they know exactly what to look for and when with the development and health of our kids. :-)
ReplyDeleteI could never figure out why the geneticist keeps wanting to see us. Once Ds is confirmed through genetic testing, what is the role of the geneticist? There are just so many other specialists to visit for specific concerns. Our genetics visits seem basically like well-checks.
ReplyDeleteYour daughter is beautiful! Our little guy saw a geneticist when he was 2 months old, but they didn't see a need to follow him unless I wanted to. I'm thinking I might make that appt again, he's 17 mos. old now and doing great. Thanks for sharing.
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