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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.
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25 weeks along

My name is Nikki I am 25 weeks ago and just found out my little girl has dandy walker.  My husband and I have so many questions we dont know where to start.  We have two children and are worried about the needs they will need along with the new born and how that will effect our family?  The other question is how do you all make it financially with all the doctor appointments and the bills that you have to pay in order for your child to get by.  This is all so much to take in and dont know where to start if any of you can help before we make a decision that we may regret for the rest of our lives please do we are up for any comments good or bad.

December 25th, 2009 | Category: General

3 comments to 25 weeks along

  • Maxinepink
    December 26th, 2009 at 7:30 pm

    Hi Nikki,
    I have a daughter who was born with DW 19 months ago. I also have two other children who were born healthy. Dandy walker was not detected during pregnancy. I had an elective section at 39 weeks after having 2 previous sections. It was quite hard the first 3 months of Gracie’s life. She has her first operation at 3 weeks old and had 4 more in the first 3 months of life. It was very hard on everyone. My other 2 kids spent 3 months at my mum’s house. I was blessed to have her look after my kids as i made things easier, one less thing to worry about. My husband and i spent basically 3 months at the hospital with her, never left her side. And she had one more operation late march, so that was 6 shunts altogether she had done. I would go to the end of the earth for her. If i could change anything about her ….I wouldn’t change a thing. She is such a bright and fun loving girl..although she is not walking yet, she is cruising around the furniture and crawling like mad, she is getting there. She can speak like a scholar. The other two kids love her very much, they understand that when Gracie is sick that mum and dad need to go to the hospital and be with Gracie…because i tried to do it previously by myself and i was just wore out, so you do really need somebody with you…if you are prepared to stay with her all of the time. They are very much apart of everything in her life and they really look out for her. So DW kids get one operation and are lucky enough not to need another one..so that just depends on the child itself. My daughter attends PT, OT and ST once a month and we joined a system called early intervention in which i really recommend to you,,it is alot of appointments but you get results. I don’t treat Gracie any different…and that really helps with her development.
    All babies are blessings…You just have to take them on a different journey through life with some of them.

    I would love to hear from you again
    all the best
    Maxine

  • Eric
    December 27th, 2009 at 3:28 pm

    Hi Nikki,
    Our son was diagnosed at 19 weeks gestation and we were given a pretty grim outlook. We had may of the same fear that you may have and although overwhelmed we decided to continue on with the pregnancy. I can’t tell you how pleased we are with that decision. Today, Ryan is 4 years old, he’s doing great and his outlook is bright. There are challenges and he does receive PT, OT and Speech but we wouldn’t trade him for the world.

    We are happy to help you locate the resources and therapies that are available to your child for free if you will let us know what state you are in. There are a lot of supports available that we didn’t know about until we were thrust into learning about all this. Call or e-mail anytime.

    Thanks,
    Eric and Andrea
    301-919-2653
    coleman1324@hotmail.com

  • tuckershelly
    December 30th, 2009 at 11:05 pm

    Nikki, Our daughter is going on six months and we too have a two year old son who is completely healthy. We have had our ups and downs as well but we love our daughter very much and I don’t know what we would do without her. She receives OT services right now and will be getting PT in the future month. We did have to put a shunt in at three months but since then “knock on wood” no other health problems have arose. I wish you and your husband HOPE…take each day one at a time and be happy you have been given the opportunity to have a baby–one for which is going to take you on a journey that is going to bring your family closer together. This is a hard decision but there is always HOPE.

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