Just gave birth to a baby with Down Syndrome

[blueyes34]

Hi everyone!  just wanyed to introduce myself!  I gave birth at 34 weeks to my little munchkin Vaun.  We knew from the bloodwork that our chances were very high....1:16.  I was really upset at first, we're still awaiting the official word from the blood work that was sent to the lab.  He has many markers, small ears, nose, almond shaped eyes but I wouldn't trade him for anything.  I'm in Canada and am waiting to hear back from our regional health dept for care and support.  Does anyone know what type of services are offered or what to expect?  Any assistance would be greatly appreciated :)

[blueyes34]

You're the best! The breastfeeding clinic was so so.  He was able to latch on with the use of a nipple shield, but it leaves a HUGE blister all across his bottom lip.  He only nursed for about 10 min so i can only imagine if he stays on longer.  The blister did go away after about 2 hours but I don't think it's normal.  The nurse had no idea why it had developed.  I wonder if it's a reaction to the nipple shield?

I'll call the office tomorrow to see what they say.  I had spoken with someone yesterday who gave me a direct line to a girl named Leanne, but they said to wait 2 weeks to call!  I'm not going to wait any longer.  I really feel that the earlier things can get started the better.  I'll let you kinow how it goes.

I never was able to open the link.  If you could give me the contact person's name and email address that would be great :)  Hubby and I are both really interested in attending the conference, every little bit helps right?!  

I'll talk to you again soon,

Take care,

Penny :)

[Dragon1973]

Hi Penny!

Just talked to my EI today, and she tells me she believes you have been assigned, but that you should call the OAICD directly to see if they can speed up your initial contact - I will send you a PM to give you their number and the name of the lady who arranges the meetings.

Did you manage to get the Conference Flyer opened?  If not, I can fax it to you directly and or give you the name & email of the person who is putting everything together.  I did find out that registration details were forthcoming and had yet to be posted on the flyer.

How did the BF clinic go?  Did they give you some other ideas on how to get your Little One to stay latched?  I hope things are going well, and I will send you the PM right now!

Sandi :)

[blueyes34]

Thanks again Sandi!  You're support is absolutely a lifesaver!  We have our check up this afternoon at the hospital so I'll ask them if they can give me a better idea on how long the wait list is currently.  I've tried many times to go to the link but everytime I do my internet explorer keeps shutting down.  It doesn't allow me to view the details,  I'll ask one of my friends to see if they have any luck pulling it up.  hubby and I are both really interested in going to the conference so we'll see what happens!  

Take care and I'll keep you posted :)

Penny

[Dragon1973]

Hi Penny!

Yes, our waiting list in Ontario is long, at one point I had heard 8 months, which was why I was glad at the time we had the Amnio so we were able to set ours up right away.  But that may not be the case presently.  I am glad they said they will contact you soon.  I will ask Jenn on the 9th when I see her if she has you on her list as yet.  
The group I have put together should start in October, but I will know more by September as we will have a meeting to discuss things before the group gets started!  I have listed some information in my blog about the start up of the group, so if you get a chance to visit my blog, I have a few entries about it (probably back a few months ago I think.)  
Keep working on the breast feeding, it's a learning lesson for both of you, and it was a bit of a slow process for us too, he did  the same thing!! I have to laugh (sorry) hearing you say he spits out your nipple, because Hunter did the same thing (smarty pants!)  You may find he gets sleepy easy when feeding, so what we did was actually rub cold items on him to keep him awake (sounds horrible I know, but it worked!).  
The Ds conference - Try this link directly:  http://www.dsao.ca/
It's the Down syndrome Association of Ontario, and in the website, they have a link to the page with the details.  (Also my story is listed down the page a bit (Welcome to Our House) if you would like to read it there!)  I have never been to a conference, because the last one's I wanted to go to was out in Edmonton if I remember correctly, and Hunter was only a few months old.)  Hunter is now 10 months old in 5 more days, getting big fast!  
I don't suppose you will have to wait too long before your EI contacts you, but if they don't please let me know, I have a few numbers who you can call to expedite things (I know the manager at the Ontario Association for Infant and Child Development - OAICD - they run the EI services in Durham), and Hunter's EI is now one of my friends.

I am glad that you found me here on MedHelp, it's so nice to have a contact close to home and hopefully a new friend!

Sandi (Dragon1973)
MedHelp Down syndrome Community Leader
& Ds Group Forum Founder/Moderator

[blueyes34]

Thank you so much Sandi!  I was told that we were referred to a group who would be contacting me soon but apparantly there's a long waiting list.  I'm not sure what group it's for.  I'd love to join the group that you've put together.  Can you give me some more info on what it's all about  Right now I've just been pumping, he seems to only latch on for a second and spit the nipple out.  I just went to the breast feeding clinic in Whitby yesterday so it's nice to know we can get support there any time it's needed.  We go back on Tuesday.  We have out first dollow up appt with the pediatrician on Monday.  hopefully they give some info on the tests that you had mentioned.  I;ve tried several times to open the info on the Down Syndrome conference in Niagara Falls and for some reason it won't allow me.  Have you been before?  How old is your little one now?  Do you think we'll have to wait long to get contacted by an Early Intervention Specialst?

Thanks again :)

Penny

[Dragon1973]

Hello fellow Canadian!

Welcome to the forum, so glad that you have found us!  First off, Congratulations on your baby he sounds wonderful!

In terms of care, you will find that here (Canada) the teams are extremely supportive and offer so many services.  First you will be assigned an Early Intervention Specialist, who will not likely come out to see you until your son is 3 months old.  In those first months I know we saw our genetics clinic as they wanted to evaluate my son to see how good or bad his hypotonia (low muscle tone was).  Fortunately for us he didn't seem to suffer badly with hypotonia and was pretty strong.  We did have an amnio so we too were aware of his having Ds before he was born.  We also had a confirmation genetics blood test done after birth to determine what type of Ds (whether Trisomy 21, Mosaic or Translocation)  You can read more about these different types on my blog if you haven't heard or understand what the differences are.  We learned that it was random T21, which isn't passed on from either myself or Hubby.
Depending on your son's needs, he may also be assigned an Occupational Therapist and later on a Speech Therapist if he should need one.  A Physical Therapist will also be assigned if he needs one.  My EI has a back ground in PT so she often helps us with those things to do with Gross and Fine motor skills.  
I want you to know, because of their wonderful help, our son is developing ahead of typical babies, and we are so very pleased.  My story is available for you and anyone else to read through my blog.  (The blog address is located in my profile and is called Welcome to Our House.)
I know at this point you must have tons of questions, and I would love to help if you need any questions answered.  Being a police officer and a special needs co-ordinator I have tons of resources that hopefully I can share with you.  I started a parent/child play group with the YMCA out my way here in Durham which will start in Fall.  I am not sure if you would want to travel to Pickering (I am in Ajax myself and I see you are in Oshawa!) when the group starts, but you are more than welcome.
I bet that you will likely get the regional team I am working with, and if you do I am so very excited for you.  My EI's name is Jenn and she is wonderful.  Please do let me know if you find out who your EI will be.  I do talk to Jenn all the time and I see her in 6 days.  I will ask her if she has any new files and tell her I met you here!
Please do PM me if you have any other questions, AND please please feel free to post anything and everything you wish here or in the Ds group forum (I look after both.)
Again,
Welcome and CONGRATS!  This is the start of something so wonderful, fulfilling and exciting.  Know also, that your son will be just like any other baby, with maybe a few other exciting things along the way.
If you have any questions about feedings, please ask - I hope that is going okay for you also.
In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.
Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.

Sincerely,
Sandi (Dragon1973)
MedHelp Down syndrome Community Leader
& Ds Group Forum Founder/Moderator