What am I missing? Should I be worried?

[rlm08]

Hello Everyone,

I am new to this website, and new to the Down syndrome community. My 3-month old daughter was born in March with DS. We did not know about it until the day she was born. I could go on and on about everything that I have been through over the past 3-months, but I am sure most of you already know. To cut to the chase, she had an AV canal repair heart surgery at 7 weeks old, and is now finally able to gain some weight (only 8lbs 13oz right now). The only other issue I am aware of thus far is her hearing. She can definitely hear, but most likely does have some hearing loss. We are waiting on a diagnostic test to find out if she will need hearing aids. Next week she will start her weekly occupational therapy appointments. She will also be having a physical therapy assessment to determine her needs.

I have read about all of the medical issues that children with DS can have, I don't know if I am in a state of denial, but for some reason I am not worried. Part of me is hopeful that her case is mild, and I am feeling that I will just take it as it comes. That being said, I am fearful that there are things I should be looking out for. I am scared that I am going to miss the boat on something.

From your experience, is there anything else I should be doing or researching? What advice can you give me that would help me as a new parent make sure that I meet all of her needs?

Thank you

[Chris]

Welcome Corinne! Congratulations on your bundle of joy. My daughter had a complete AV canal defect. Her surgery was on her three month birthday. She was 8 lbs 2 oz at birth and only 9 lbs 3 oz when she came home after her surgery. She gained weight very slowly until she was 8 months and then suddenly she was gaining a half a pound a week!

The first year is tough because of all the doctor appointments but it does get easier. My advice is to relax and enjoy your baby. She will only be a baby once! I was so busy running Sarah to every therapy, playgroup and class I could possibly find that I didn't get to really let her just be a baby. I don't regret getting her early intervention but a few hours a week would have been enough.

You didn't tell us your daughter's name and we want pictures! ;D

Chris

[wrblack]

Welcome to Uno Land. Sounds like you've got this Ds thing covered. Chris gave you some good advice. Best thing to do, which is sometimes the hardest thing to do, is kick back and enjoy your baby. But maybe a year or two out, look around for a Ds clinic or good developmental pediatrician. We see one about once a year at the Ds clinic at CHOP and main purpose of visit is to ask are we missing anything important. -- Bob

[Jackie]

Welcome Corinne

I can hardly wait to see pictures! It sounds like you are on track and you have already gotten the best advice which is "enjoy your child." She is who she is and everything will be just fine. My daughter is 30 now and lives 500 miles away from us in a setting she chose. She is an artist in Austin TX in an arts program and sells well.

While you have some advantages we did NOT have 30 years ago...I had the advantage that we were not overwhelmed with choices of what to do and what not to do in terms of therapies etc. and Emily has turned out very well as have most of the people her age with DS. So follow your heart in this respect and listen to the moms of younger kids on this site. It is an excellent place to start and make friends.

Glad you are here and eager to learn more.

Fondly
Jackie

[rlm08]

Thank you to all of you for your input. You have made me feel better in trusting my instincts to just enjoy her, give her lots of love and attention, and use my common sense. I am sure there will be a lot to learn along the way, this is a whole new world for me. The hardest part has been accepting the fact that no one can tell me how severe or mild her case is, that I don't know what the future holds for us or what her developmental and medical needs will be.

BTW, how do I post pictures here?

[kg91207]

and the "severity of her case" may vary by her age, early interventions, your advocacy for her meeting her needs, and the love you give her! Sounds like she is doing great so far! My big advice is to find a local support group. I have loved connecting to other parents who are raising their children at different ages and stages, it has been SUCH a big help!

Another thing that helped us, was the book they handed us the day we got the results of the amnio-Stray-Gundersen, Karen (Ed.). Babies With Down Syndrome: A New
Parents Guide. Bethesda, MD: Woodbine House. 1995 (2nd Edition). I think there is a 3rd edition now. We still refer back to it. Several of my friends have read it, and I've recommended it/handed it out to clients I work with.

Yes, we need to see pictures!!! You will need to load them to photobucket or something like that then cut and paste the link. That's about as high tech as I can get to tell you how to post pictures!!

[wrblack]

Yes, there is a 3rd (2008) edition of Babies ... new parent guide
www.amazon.com/gp/product/1890627550?ie=UTF8&tag=dowsynheaiss-20&linkCode=as2&camp=1789&creative=9325&creativeASIN=1890627550
Has a new Chapter 3 by Dr. Leshin on medical stuff. And that's another good source of info and links. Dr. Leshin maintains a web site
www.ds-health.com/
Don't think he maintains it as much as he used to, his essay on ginkgo biloba has been "coming soon" for a couple of years now I think, but still lots of good stuff there.
And, yes, if you use photobucket, you can just copy and paste the IMG code into your post to include a photo. But you can use the photo tool here, 4th button in 2nd row of "Add Tags" on reply screen. Paste the url for most any image on the web in between the bracket img bracket and the bracket /img bracket, if that makes any sense.
Let's see if I can borrow cover of book.



Cheers,
Bob

[rlm08]

I do have that book, it was sent to me by DSALA along with some other materials and gifts. When I get home I will check which edition I have. My mother-in-law also has the Spanish version.

My husband also found out today about this book, have any of you heard of it?

www.nutrichem.com/Down-Syndrome-and-Vitamin-Therapy-98.html?vmchk=1


Here are a couple of pics, one of Reina with her 2yr old sister Violet, and one of just Reina. (Hope it works.)

[kg91207]

she's so pretty!!! and she kind of looks like Violet! Thanks for sharing!

[Chris]

The good news is that you have already provided Reina with the best teacher ever! Violet will probably teach her more than any professional ever will.

Your girls are adorable! None of us can predict the future. I believe God has a purpose for each one of us and as parents we need to help our children reach their full potential. When Sarah was a baby, I was sure she was going to be a Ds superstar. She is now 8 and I think she probably is average for a person with Ds. She struggles with speech but has an outstanding visual memory. Just like anyone else, she has her strengths and weaknesses. Her dad and I think she is pretty darn special because she is our little girl. ;D My guess is we would feel the same way if she had average intelligence or was a genius.

I remember when Sarah was a baby and I was anxious about every little thing. Someone on this board said not to worry, she will talk someday and talk back, too! In other words, she will go through the same phases as a typical kid but on her own time table.

Enjoy your girls!

Chris

[CC]

WELCOME TO UNO ;D

CC ~ from New Jersey

[Emilysmom]

Welcome to Uno Mas! ! ! Congratulations on the birth of your beautiful baby girl!

My best advice is to keep doing exactly what you're doing. Sounds like Reina is off to a very good start already! And, I totally agree about her 2 year old sister being one of the best possible teachers she'll have. Siblings can provide so much natural "therapy". Since you already have the "Babies With Down syndrome" book, you have tons of info at your fingertips. That book was so much help when my daughter was born. I would recommend that you get as involved with the DSALA as you can.......I've heard great things about that group. One of our members, Steff, is from LA and has posted about some of the great things that group has done.
As everyone else has said..........Reina will grow and develop and bring you more joy than you ever dreamed would be possible! I'm looking forward to hearing all about her as she grows up.

Again........WELCOME TO UNO MAS! ! ! We are here for you, and will always be happy to answer questions, we're good 'listerners' when you need to vent, and will cheer with you as your little one reaches each milesone.

Susan

[Jackie]

ohhhhh she is soooo cute...thanks for the pics...both girls

[steffipoo]

Yes she is so cuuute and teeny weeny... OMG I LOVE BABIES!!! AND from experience talking with other parents throughout the years is that babies born with ds are the BESTEST BABIES hands down.
Just love her lots and sounds like u already have everything in place. My son and Olivia are a little over one year apart and he taught her sooo much. Now she's 12 and he's 13 and they are best of buds and drive each other crazy too.nJust normal teenagery stuff. awww can't wait to hear more. (((HUGS))) Stephanie

where u from?

[steffipoo]

OMG your from L.A. me too!!!! I live in Westchester CA!!!! Today we are going to see the karate kid at the bridge with olivias karate class( even though her sensei has told us 2 million times it's NOT karate in the movie they are doing it's KUNG FU... if I hear that one more time lol) but would love to hook up with you one day. Which hospital are ypou all affiliated with? We're at UCLA which we love. Did she get her <3 surgery at childrens l.a.? Yea a L.A. gal.... FINALLY hey Dawn another one of us.. !!!!!
GOOOOOOOOOOOOOOOOOOOOOOOOOO LAKERS!!!!!! (((HUGS))) Stephanie