MOSAIC MOMENTS

Today I received a comment on my blog from a new Grandma. Because I am answering questions and know that many will come on my site who have a new baby with Down syndrome or mosaic Down syndrome, I thought I would go ahead and address Robyn’s concerns here in my posting, so others can benefit as well.

This is what Robyn told us…..

I’m grandmother to precious new baby boy Japree born on Dec. 6. He was diagnosed with DS through a karyotype test. He is doing wonderful, no heart problems, no other heath problems, other than small because he’s a preemie. The info. on simean crease is interesting. Not sure how to understand it as I’m new to this. He has both creases on both hands. No simean creases at all and does not have features of baby with down syndrome, although I know he may be too young to tell. Doctors were suspicious because he was floppy and had sandal toe. We are still trying to learn. I have to say after dealing with doctors through this whole thing, they are the rudest people I’ve ever known. Your website is very informative and I plan to read more.

First of all, I want to congratulate you, Robyn, on your new grandson! What a beautiful name his parents have chosen for him!

It could be too early to tell if he has any strong physical characteristics of Down syndrome.  A few months from now, if he doesn’t have those features, then you can revisit the idea to see if he has mosaic Down syndrome instead of Trisomy 21 Down syndrome.

Unfortunately, some doctors can be rude. However, we can not fault them for their rudeness, but only educate them with our intelligence. So, next year, when you are celebrating Japree’s first birthday, send a picture and a letter to the doctors who are caring for him now and tell them about all the things Japree is doing! Tell them how wonderful he is and how wrong they were in their assumptions.  In one year, you will be far more educated on Down syndrome than the majority of the doctors at that hospital and will, like all grandparents, exercise your bragging rights!

I would like to recommend some website for new parents and grandparents of babies with Down syndrome and mosaic Down syndrome.

The National Down Syndrome Congress has a great page with lots of information on Down syndrome.

For  information on mosaic Down syndrome, you can visit International Mosaic Down Syndrome Association for our information packet.

Yvonne Pierre has just started a new format for her site. This is a great messaging system that will get enable everyone to talk through email and other outlets. Here site is HYHonline.com

I would also recommend that you join an online support group. There are hundreds to choose from. The most informative on Down syndrome is the Down Syndrome Info Exchange.

International Mosaic Down Syndrome Association’s main support group can be found by clicking here.

Both of these groups are email groups that allow you to email with families throughout the world who have children of all ages with Down syndrome or mosaic Down syndrome. Because these are 2 of the most active groups on the web, I suggest that when setting up your email account with them, you choose “Daily Digest” if you don’t want too many emails at once in your inbox. This will allow you to receive all the emails in one message and respond to those you wish to.

Finally, I recommend that you find a local Down syndrome support group in your area. You can find yours simply by typing “Down syndrome” and your city and state in your search engine. Most areas have a Down syndrome Association but if you have trouble finding one, just leave me a comment and I will be happy to help.

As a new parent or a new grandparent, all the information you receive can be overwhelming. Please remember that your baby is a baby first! Just like every other baby, he needs love and comfort and cuddling. He doesn’t know that he has extra chromosomes floating around in his body! And you wouldn’t have either if someone hadn’t told you so. None of your dreams or wishes for this new baby have changed.  Enjoy him thoroughly. Spoil him rotten! (it is your right as a grandparent) And love him like you would any new baby!

And, don’t worry about tomorrow, because today has enough trouble of its own!

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