Re: Preparing for Appointments

[Guest guest]

Hi Jen,

When we went to the geneticist, we had lots of basic questions; How? Why? Now

what do we do? (of course Olivia was just a few days old at that point). They

showed us how DS and MDS happen using a illustration of chromosomes. They gave

us information about the local regional center, talked to us about the

challenges that Olivia might face and really emphasized early intervention to

help support development. My husband asked a lot of technical questions, but

that's him, the " techie " . As far as our experience went, there was nothing I

felt I missed out in asking once the appointment was over. They gave us their

contact info. in case we had any further questions. They concluded the appt. by

doing a physical check up on Olivia.

They also gave us a book, " Babies with Down Syndrome - A New Parents Guide,

Third Edition " edited by J. Skallerup. I haven't read it through yet, but

have skimmed through it. The focus is on DS, but there is info. on MDS as well.

It talks a lot about the types of help out there, what to look for

developmentally, cognitively, socially. I think it will be a helpful resource.

It also addresses and validates the needs and concerns of parents with kids with

DS, which is nice.

Congrats on the cardiologist visit. Olivia also had a good visit, no problems.

She just saw the audiologist and has no problems hearing. We have been

referred, but not hooked up with the regional center yet as we might be moving.

Once we do get connected, we will most likely be meeting with speech, OT and

physical therapists, and that's where I will need help as it's all new to me!

Hope that was helpful.

Tacia

Mom to Olivia 6 weeks