April 2000

Hello, I am so glad to have found this site. My daughter was born November 9,1999. I have searched everywhere to find other babies with her condition. I found out somthing was wrong through an ultrasound. They seen she had cleft lip and pallet. We did a lot of tests,an amnio-,and a chromosome test to see if there was any other problems. It all came back negative. It was only supposed to be a complete bilatoral cleft lip and pallet,as if that isn't bad enough. I cried for a straight month. Finally I got the strength to say o.k. this is what we have and we are going to do the best we can. Besides,it is all cosmetic,it can be fixed. Well,when Emily was born 7 pounds 11 ounces I was so blessed and so happy to hold her and let her know I was going to take great care of her. She actually had midline cleft lip and just the front part of her pallet missing. She has no bridge of her nose. Her eyes are close together and a resessed forhead. Because of all these traits they wanted another chromosome test which came back negative they also wanted to do a catscan which showed her missing her Corpas-collosome. Later we did a MRI which showed her having Semi-lobar Holoprocencephaly. we were devastated. But,again we got through it and said it will all work out. We were told she will be mentally retarded,only time will tell just how severe. She is now a week away from being 5 monthes old. She isn't on any medication or having any siezures. She is only 11 pounds and 2 ounces,so she isn't gaining weight very fast but she is chubby and looks very healthy. The doctors say she is just going to be a very small child. She is in OP and PT also speech. She has a special bottle we have to squeze it to get the milk out,her sucking isn't strong enough on her own.She doesn't grab ahold of toys or objects yet,and she doesn't roll over yet. I am hoping for the best and maybe she is just going to be delayed a little. She can hold her head up but she isn't very strong at it, sometimes you still have to give her head support. She is very alert. The doctors are still surprised at how alert she is. She looks at everything around her and smiles a big beautiful smile. she has a kickstart gym and she loves it. you have to kick it and it makes toys spin and music play. She doesn't sleep real well. Little noises makes her scream if she is asleep or not but that is subsiding a little. She has a hard time having bowl movements she cries in pain somtimes but they havn't put her on any medicines for it. She is scheduled for surgery for closing her lip April 19. Although I am excited about it I am also dreading what she will have to go through. Other than all things considered Emily is a very happy baby,you can even get a smile from her when she is trying to pout. As long as we are holding her she is very content. She is truly a blessing.

I would like to here from other parents like my Emily. Please write to baw1972@netzero.net

DECEMBER 5, 2000

Well, it has been a long time since I have updated Emily has had her surgery and all went better than expected. She is now 13 months old. She still is not sitting up, holding her bottle or anything else. But she does seem to be getting stronger at holding her head up. She still does not sleep very well, she wakes up about 3 or 4 times a night. But she still has a big smile and she goos more and tries to laugh out loud. She is very interested in people and what is going on around her. When i go to pick her up she will try to raise her head as if to help. I believe she knows what is going on she just cant get the words out or her hands and feet to do what she wants them to. She wants to be held all day and talked to, she wants that much more than a toy to look at. She is such a joy in just what little she can do. Everyone around her adores her. She doesn't know a stranger. She will smile a big smile for any one walking up to see her. She is still not gaining weight very well she is 4 days from 13 months and only weighs 14 pounds and 14 ounces. She is still on the bottle she will only take 4 or 5 bites of babyfood at a time. She has only had bloodwork done one time so far, the sodium level was a little high. Well, enough for now. Check out her before and after surgery pictures.

Feel free to e-mail.