Translator

A copy of the current financial statement of the Dandy-Walker Alliance, Inc. is available by writing to: Dandy-Walker Alliance, Inc. 10325 Kensington Pkwy Suite 384 Kensington, MD 20895 or by calling 1-877-Dandy-Walker. Documents and information submitted under the Maryland Solicitations Act are also available, for the cost of postage and copies, from the Maryland Secretary of State, State House, Annapolis MD 21401, 410-974-5534.
«  
  »

Yajaira

I found this site by glance. And it’s great to find and chat with others who are going through the same as you are. My niece is 8mths old and she was Dandy Walker and Rocker Bottom Foot Disorder. And we as a family are trying to understand these disorders and what to expect, but it’s hard to read and articles and books and think of is that going to happen to her what are we waiting to happen next. She is my youngest sister 1st child and it was amazing when she got pregnant then the worries, WHY’s, if’s, are we going to expect. She was told to have adoption at 4mths cause of illness baby was going to have. But we said no this is Our Miracle we were granted and we will take her for as long as we are granted. Now that is the problem. For how long? She is not sitting,rolling or crawling. She still doesn’t have head or eye support, but she does baby talk and eat and is now starting to smile. Recently she is having breathing issues to were her lungs aren’t receiving enought oxygen and that was so scary and hard to see, it’s was like you were seeing her driftg away from you. Are other parents experiencing these issues or has went through this? Any info or advice on how you have dealt with this?

August 25th, 2010 | Category: General

3 comments to Yajaira

  • cmacmillan1
    August 26th, 2010 at 8:30 am

    Hi there, I am going through exactly the same as your sister with my daughter at the moment. Although she is only 5 months old, she is not doing anything she should be and we have an appointment with the eye specialists next week as they think there might be a vision impairment and that’s why she’s not focussing or reaching for toys or smiling back at people very often. I think we just have to be patient and do as much as we can do for them in order to stimulate and encourage their development. It could be a long time waiting, but if we are patient and hopeful, they will eventually start to progress. The breathing problems are scary but you just have to keep calm and try and do your best to cope. God bless your niece and your family, Catherine and Sara.

  • jillian1976
    August 28th, 2010 at 12:59 am

    Being patient and taking it day by day is the best advice. My daughter is now 12 and the scariest times where when she was a baby. Vision problems can be the cause of alot of delays of motor skills my daughter was not a happy baby she didn’t smile a lot either and didn’t walk until 19 months old. I got her vision checked and they discovered she couldn’t see. She got glasses at 18 months old and started walking at 19 months because she could see now. She also started to smile more. I like to try and give everyone on here hope. My daughter has a shunt and Dandy-Walker but she is at age appropriate level in school and loves to do all the things a preteen loves to do. She’s a cheerleader, goes to dances and talks on the phone. She is a blessing like all children. Good luck to everyone!

  • Yajaira
    August 28th, 2010 at 3:10 pm

    Thanks You so much for your advice. It’s great to hear from others who already have gone through what we are going through as a family. We keep our faith strong that we can overcome anything we our put through to be able to help her out any way possible we can. I appreicate that everyone here is just so supportive and honest with each other. The one big thing that came about this was that my sister was strong enough and able enough to tell the rest of the family what our little blessing is suffering from. She is finally accepting that her 8mth daugther is speical. She is extremely special just like all the other children in the world so have this and much more. One thing that she did surprise us when I got her a musical night light baby she can now touch the dolls heart when she is holding her and push the music on by herself. We celebrated this moment so much I had to get her another toy with music and lights. One thing I would let others know is to celebrate very little step your child goes through. If it’s from moving around, holding object or following object with there eyes to smiling it a fantastic journey you go through with them. So again thank you to all with your advice.

You must be logged in to post a comment.