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My name is cara and am 25 years old with 2 beautiful children. Dylan is 2 and a half and addisyn who is almost 8 weeks old in which we found out when she was a day old after a normal pregnancy that she has a deletion of her 2nd chromosome. This means for future possible developmental delay, growth delay, seizures, her hands are deformed, microcephaly, and other things. We have already started to be overwhelmed with the making of appointments to every dr that exists it seems. Dad is kinda off in no mans land with all of it so i feel so on my own right now. The fear of not knowing what the future holds almost makes me sick. Excited to meet u all.
((Hugs)) I know you're overwhelmed, but it will get easier. You'd be surprised you strong you become when your children need you. As far as your husband not dealing with it, it's a common complaint. There are a few of us that feel we are shouldering it all. Make sure you have a support system, even if it's online (on our board, I hope ) You can come here to laugh, cry, rant, rave, and scream.
Lastly, Hi! Welcome to the Special Needs board! My name is Hope, Mommy to Dakota, Christian and Ava. Ava is my SN baby with too many issues to list, including CP and airway defects. We've been referred to genetics also. I'm so happy you joined us!
Hi! I'm Jessica! Welcome! The ladies here are incredibly supportive and kind. I hope that you like it enough to stay! (And I think you will! )
Do you mind if I ask a few questions about Addisyn? Was she born with obvious defects? How big was she? Have her other blood tests come back normal? Do you know her specific chromosome 2 deletion? My son's syndrome is a genetic disorder. Some of the kids don't have the genetic affirmation for the diagnosis, but some of the kids have issues with chr.2 deletion. (That's not the main part of the syndrome, but something that seems to affect more of these kids or kids like them than the main population.) Anyway, there was a study done at Johns Hopkins a while back (within the past few months-2 years) about chr.2 deletion. Milo doesn't have this, but we looked into it because he has cross-over asymmetry, which is exceedingly rare, and seems to come with some chr.2 deletions.
ANYWAY (sorry-just thought you might be interested!), my point is that there's a lot going on with chromosome 2 deletion right now. I don't know where your genetics dept. is, but you may want to mention it, depending on what the particular issue is. Milo's arrays turned up nothing, but we do all of the research just in case (you never know what how genetics will change from day-to-day). Like many genetic disorders, Milo's comes with MANY issues, too...pretty much global. We add to our list of specialists weekly, but some of them, we now just see for follow-ups! I know that it seems like you live there now, and I'm not saying that that won't continue, but somehow, it gets better.
(((HUGS))) PM me anytime-I'll try to find some of my info on chr.2. I know several people with kids with varied chr.2 deletions-I'll try to get in touch with them, if you'd like! It may be overwhelming, the amount of info, but it may help you get through this time, too!
honestly everything is so new i felt awkward about joining this but im sooo happy i did already. thanks to all for your replys back.
i tried to download the messenger from aol so i could im but it didnt work so hopefully u will find this reply. first of all thanks for ur responses. she has the chromosome deletion 2q24-31. on that specific deletion there was not a ton of reseaech but on the region 24q our genetc counselor had alot. she did have abnormal contractures in her hands, wide space between 1st and 2nd toe and webbing of toes both feet. i had an amnio at 35 weeks because i had alot of fluid and found out her diagnosis the day after i had her. after reading over the research i noticed facial abnormalities eyes slant down, slightly low set ears, small chin and nose but all in all she appears normal at first glance. the kids on our articles Visually looked worse. shes a poor eater and slow gainer so thats the biggest immediate challenge.
im eager to meet other parents but scared too. our genetc counselor said when we were ready we could contact a family in our state with a similar deletion. talked to her few weeks later and the family wasnt ready to talk. their child had passed away. i was a wreck for a few weeks. i know w genetcs every case is diff and not to believe everything u read but wow wasnt prepared for that holding this beautiful little girl who seems normal but we pretty much wait for things to go wrong. ive been praying more than i have in my life and know we will get through this just still so scared but happy w any info u have. talk to u soon.
Hi Cara, Welcome to this board. I know for me when my son was that age (he's 18 months now) I wanted to be in denial, it was really hard. When parents would accept their kids and say they would not change them for anything, I was like "WHAT?!" Well at 18 months, I have reached that acceptance, although I would happily accept a magic cure if it existed!
The road is long and hard and you have it in you to do it all for Addyison, please use this board as much as you need and feel free to contact me privately too. Some of the toughest part is you just want to help your child, but you have to battle insurance, and programs that are set in place to help your child, but make you jump through hoops to get their help.
Please let me know where I can fit into your struggles and joy to help you as a mom who has been there.
Oh and Carter has a genetic mutation called Mowat Wilson Syndrome that causes several birth defects (several have been corrected by surgery), malformation in the brain, intestinal disease as well as mental retardation (not sure how bad yet) and most kids do not speak at all there is more, but that is the main things.
Please don't feel awkward! I know where you're at; my son was given just a generic "risk of delays, retardation, microcephaly, seizures, etc, etc, etc" when he was born, and that was almost worse than just being told he WOULD have something or other, because we seemed to spend so much time guessing and waiting. I do agree that it gets easier to deal with over time though; I never thought I would have the strength to be mom to a special needs kid, but you find it somehow, especially with a good support network. Please feel free to rant, vent, cry, cheer, or ask any questions here! All of our kids have something different, but a lot of the emotions and situations are similar.
I'm Kel, by the way, mom to a pair of boys. Eric, my almost-3 year old, is healthy and all toddler. My 1 year old Danny has global delays, is deaf, and may or may not have some sensory issues (we're still trying to put our finger on that one!), among a million other risk factors we're watching out for.
thanks to u all and nice to meet u. and ur right sara i am definetely in denial. my friend has a 5 year old with severe MR and cerebral palsy and she always says she wouldnt take anything back. i hope to have that mind set and get out of my pity party for myself and my family and quit asking why?? she is a gift from god and if he didnt think we could handle it she wouldnt be here now. thanks to u all.