Hi everyone. I'm Naomi.. mom of Elijah. Elijah has 4q deletion (need to love up the exact details.. forgot the numbers). He is now 11 months old. His major symptoms have been Congenital Heart Disease (large VSD plus pulmonary stenosis), overlapping toes, poor growth, and bad reflux. My question is.. what was your child doing when he/she turned 1 year old? Could they walk, sit, stand, etc...? Were they eating table food, nursing, formulat?? Were they babbling, saying words, completely quiet? Were they social or withdrawn? Were they smiley, or reserved? I thought it would be interesting to see the spectrum of what can be "normal" for our kids with this chromosome disorder. Thanks!

Hi Naomi, My son is 5 years now. He sit up when he was 2 1/2 years, walk when he was 3 years 4 months, he does not stand up by himself yet, has to use the furniture, nor climb stairs, we have to hold his hand. He is non-verbal, although makes lots of sounds, like trying to talk. He does eat table food, but is very sensory and takes a while to try new foods, texture is a problem too. He goes to a Fedding Clinic since he was young. He does phisioterapy and ocupational therapy in regular basis; at school as well. He goes to regular kindergarten with a E.A. (educational assistant) most of the time.There is a Yahoo Group especific for 4q deletion, with picutes, milestones and information; it is very helpful because you can post your questions and get the feedback from parents that went through the same as you. My son had heart surgery last September for his PFO/ASD, everything went really well and his recovery was amazing. Feel free to ask any question. Daniella

Hey Girls, Our (almost 6 years old) daughter was diagnoised with 4q syndrome when she was 3 1/2. She started crawling at 13 months, walking just after she turned 2, she is talking pretty good now, but only really started using sentences this last year. She used an Aug. Com. Device for a little while, but now that she has words we have not used it in over a year. She has some texture issues, but over all is a great eater. As, an infant she had problems with sucking, and lost alot of weight the 1st month of her life. She also had bad reflux. At 19 months old she had tubes put in her ears and her tonge clipped. She started receiving O.T., P.T, S.T. at about 2 1/2 - 3 years old. She is currently in a Life Skills Class, and is being intergrated into the "Typical" Kindergarten class. We are traveling to England in April for the 4q Study/Weekend. Are any of you going to be there, or part of the study? Amy

Hi Amy, We won't be able to go, but I sent Brennan's picture for the study. Nice you will be able to go. Let us informed about it. Take care Daniella

I will let you know all about our experience when we get back. I am so excited to go and have some of our questions answered and meet some other families. Take care, Amy

Hello Naomi, as well as Amy and Danni. My lil Hank is turning ONE YEAR OLD TOMORROW! I thought it appropriate to reply to Naomi today - i actually just re-stumbled upon this post. Henry is only just starting to get the strength to sit upright but definitely needs assistance. He's quite stable and steady in his Bumbo seat but only tolerates it for a max of 20 min. He is JUST starting to roll from back to tummy. He can definitely roll from back to side quite easily. Often at night his body ends up at completely the other end, so i know he's moving in the night! Verbally, Henry often (and pretty exclusively) says "Mama." Over and over, different ranges and tones and inflections. Maaa Maaa... mamamama... that sorta thing. He coos quite a bit. Henry, i'm convinced, is quite easily, the World's Happiest and Most Content Baby. Always always smiling and laughing, especially when his 5 yr old brother just pretty much BREATHES around him. He tracks our movements and locations with his eyes and is just now REACTING to our leaving him - this pathetic little cry saying "don't leave me, come back." His motor skills are a little delayed. He grasps rattles and such quite well with one hand or the other, but does not transfer them. Henry has a heart defect (DORV) as well, and because of extreme reflux had a nissen procedure. He eats exclusively via g-tube and we are introducing 'tastes' to his mouth, which quite frankly, he is quite apathetic to (doesn't hate it, doesn't like it. Just 'accepts' it). Henry was born with a bilateral cleft lip and palate which doesn't help for feeding as well. He's had an initial lip surgery and we're looking to have palata surgery in Feb/March. After that, we will become more 'aggressive' with feeding by mouth. I hope some of this helps you with your own timeline. As you've read and know, kids with this deletion - their abilities are vast, and each child is totally unique. My husband and i have been reflecting upon the past year and that meeting with genetics when he was 14 days old that told us of his 4q deletion. We were told all sorts of really discouraging things and in the end, i told my husband one evening, holding hands over coffee, that my ONLY desire with Hank was to see interaction with us - a recognition - and the ability to smile and be happy. And we've been given that. Almost three fold, with the amount of coos and smiles and lovey eyes i get. I'm happy as a clam. He's our lovey and anything more he accomplishes are just bonuses! :-) The best to you Naomi. ~ Chris