Today Nicholas is 5 months old. I have never been happier with him in my life. I am so thankful for him. I am watching him sleep now. I have mostly put photos on his blog so I thought today I would tell you a little bit about Nicholas. I have said before that we found out in utero that Nicholas has a genetic condition called Dandy-Walker Syndrome. I am glad we found out when we did because it gave us time to prepare ourselves. We read all the information we could on the subject and most of it was dim. We prayed for the best. I told myself if I had a good story to tell I was going to share it. I could have used some good news when I was pregnant and wondering how my child would be. The doctors can never tell you that everything is going to be okay because they don't know. Time will tell how his development will be. Every child is different. We are just so grateful that Nicholas is doing as well as he is so far and pray that it keeps going that way. I was told before Nicholas was born that Early Intervention (through the county) and Genetics would contact me... and they did. Nicholas chromosomes are normal and we will all have more in-dept testing done. Early Intervention comes to the house and makes sure Nicholas is where he needs to be developmentally. As of now Nicholas is doing everything on schedule. The only thing we need to work on is "tummy time." Nicholas does not like tummy time but day before yesterday he was on his tummy and using his arms he lifted his head high and turned it looking both ways! I was so proud. As far as his shunt goes we just need to watch for fever and strange behavior (sleeping too much, irritability) to make sure there is not a problem. If we see any of these signs we take him to the doctor. If the doctor can't find a problem they call Nicholas neuro-surgeon and she asks us to come into the emergency room to have tests done and she can take a look at him or have surgery if needed. Nicholas also has a neurologist that we see every few months. We know that it is possible to have an infection or possibly need an adjustment in the future. These are just a few things to expect if you have a child with Dandy-Walker. Nicholas pediatrician gave us contact information for the best neurologist and neuro surgeons in the area and the number for Early Intervention. The Geneticist came to the hospital to talk to me after Nicholas was born. I have to say that everyone has been a wonderful help. They provided me with the information I needed and made everything as easy as possible. I would like to thank Dr. Roderick Love, Dr. Kristin Schraa, Dr. Anne Ritter, Dr. Donald Taylor, Hanover County Early Intervention, the nurses at Regional Memorial and the PICU nurses at CJW.
Nicholas is a sweet little boy, he is playing, laughing, giggling and babbling. He does go through bouts of fussiness I don't know if it's just a normal baby fussy, if he's teething, has an ear ache, is spoiled rotten, stubborn, has constipation, gas, upset tummy or has some kind of pressure or irritation with his head that he can't tell me about. He likes to sit straight up not leaning against you or anything else. Is that his independence or something with his head? These are questions I have for the neurologist the next time we go.
Joey has been a great Dad taking care of Nicholas at night when I'm at work and thanks to Aunt Shelly and Uncle Bobby who watch Nicholas when Daddy works late. A special thanks to Grandma who is always there when we need her and Sarah Hahne for the beautiful photos above. http://www.ardmorephotography.com/index2.php
3 comments:
I am 21 weeks pregnant a found out 2 weeks ago that our baby has Dandy Walker Syndrome. I have enjoyed reading your blog because it gives me hope. Thank you so much!
Hi!! My name is La'Trice and I found out my daughter had Dandy Walker when i was 5 or 6 months pregnant. She is the sunshine in my life and i cherish her everyday. I don't know if your son has seizures everyday like my daughter does, because he seems to be smiling in all his pictures. Just take care of Nicholas and live, love, life.
Hello,
I just found your blog. I did not know my son had Dandy Walker Variant until he was four months old. He has a VP shunt and went through early intervention in our state (Illinois) beginning at six months. He is almost completely "caught up" with his gross motor skills, according to his PT.
I hope more people who find your blog will look toward bright futures and will seek out every resource available to them in their communities' early intervention and school special education systems. Those services made a world of difference for us.
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