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Post by rlm08 on Jul 7, 2010 16:15:17 GMT -5
What cute pics, girl power!
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Post by rlm08 on Jul 7, 2010 16:12:32 GMT -5
Congratulations! A very pretty name indeed, I love it!
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Tongue
Jun 23, 2010 18:25:27 GMT -5
Post by rlm08 on Jun 23, 2010 18:25:27 GMT -5
So Reina is starting to stick her tongue out more and more...and really far, her tongue is quite long. Naturally I have started doing some research to see if there is anything I can do to help this. Her OT mentioned the Z-Vibe. I also read some posts on-line about the Nuk brush and Beckman oral therapy. I just wanted to see if anyone here at Uno Mas had any experience or recommendations on this issue?
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Post by rlm08 on Jun 23, 2010 18:21:06 GMT -5
Glad to hear he is doing well!
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Post by rlm08 on Jun 17, 2010 14:13:29 GMT -5
Praying that all goes well!
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Post by rlm08 on Jun 14, 2010 19:31:46 GMT -5
Hello Everyone,
Right after Reina's heart surgery she had a bit of a deep, raspy chest cough, the kind that sounds like there's stuff rumbling around in there. The hospital staff told us that it was normal, that she was not sick, and to pat her on the back to help all the gunk clear out. It has now been exactly 7 weeks since her surgery and she still coughs sometimes, just not as much. She definitely does not seem like she is sick at all. Both her pediatrician and cardiologist have listened to her chest, but say they don't hear anything. However, they both also commented that sometimes people with DS have smaller passages making it harder for them in general to clear stuff out.
Anyone have this type of experience?
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Newbie!
Jun 14, 2010 17:24:20 GMT -5
Post by rlm08 on Jun 14, 2010 17:24:20 GMT -5
Hello Erica. I am new to this site as well and also have a 3-month old baby with DS and a 2-year old. Here is naive question, what is Mosaic Down Syndrome?
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Post by rlm08 on Jun 14, 2010 17:06:18 GMT -5
Hi Stephanie, nice to meet someone from LA (and yes, GO LAKERS!)
My daughter was born at St. Jo's in Burbank and had her surgery at CHLA. We were happy with our experience (as happy as we could be given the situation) and were comfortable with both hospitals.
I have to say that I am feeling slightly overwhelmed by the number of organizations out there and am not sure what, if anything, I should be doing with all of them. There's the NDSS, DSALA, Regional Center, and some others I've heard of but can't remember off the top of my head.
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Post by rlm08 on Jun 10, 2010 14:47:16 GMT -5
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=1Here are a couple of pics, one of Reina with her 2yr old sister Violet, and one of just Reina. (Hope it works.)
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Post by rlm08 on Jun 10, 2010 12:23:16 GMT -5
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?
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Post by rlm08 on Jun 9, 2010 18:43:57 GMT -5
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
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