Our Journey

This is my first time "blogging" so please forgive me if I ramble on. This to is my story of my family and my son's journey with Dandy-Walker variant. Which occurs 1 in every 5000 births.

Matthew was diagnosed with Dandy-Walker when he was 6mos old. However, our journey began on the day he was born and the doctors told us Matthew had a large head primarily due to hard labor and him being a big boy at birth. Weighing in at 8lbs. 14oz. and 22 inches long and born at 37 1/2 weeks. We didn't think anything of it until our first pediatrician noticed Matthew's soft spot was still wide at his 4 mos. ck up. We then went to Baptist for an ultrasound which then led to an MRI. Matthew was however misdiagnosed with a different syndrome which was much worse than Dandy-Walker. We found our neurologist in Greensboro who used to work at Chapel Hill and got a second opinion. He confirmed to us that Matthew did have Dandy-Walker variant and no hydrocephalus. We then went to Chapel Hill to see the geneticist who agreed with our neurologist and Matthew had a karyotyping test done- which showed him to have no abnormal chromosomes. We were so encouraged with the information we received from all of our doctors. Matthew also has a small cyst on his pupil which was at birth believed to by iris coloboma (my sister has it also), come to find out that wasn't it.

Fast forward to now, God has truly BLESSED my family. We've been through alot in the past year but God has a way of bringing people into your life to help you to grow and see the big picture. I want to do that for others, I want to give back what God has taught and showed me through all of this. For the mothers out there who are just now finding out that your child has Dandy-Walker- YOU CAN DO THIS!!!! It's not easy and you do have some heartache, but through each milestone met and each smile from your child- IT'S WORTH IT! I wouldn't have chose Matthew to be born with this condition, but I wouldn't want him to be born to anyone but me. He's my life, my heart, my soul. He was created by God for God's purpose and he's perfect and handsome might I say.

Matthew is now getting ready to turn 18mos. old next week. He's an avid crawler, which he didn't start til he was 15 mos. old. At 15mos. all in one week, Matthew learned to crawl perfectly, pull up to stand, cruise, and finger feed himself. He wouldn't be where he's at today if it was for his physical therapist, Holly. (Thank you Holly-so much) Matthew didn't qualify for speech or OT. I've tried to get both and so far no luck. However, with Matthew's new found fast mobility he's forgotten how to talk. He was saying at least 8 words by 15 mos., now we're lucky if we get one. We do get animal and car noises though. Our pediatrician says that boys tend to do this especially if more interested in another task and to give it another month. Matthew has been battling another ear infection also-so we might be looking into tubes.

Matthew starts hippotherapy at Riverwood Theraputic Riding Center when he turns 2. So he'll get to start when school starts- we're so excited about this new adventure for Matthew. Matthew does have to wear AFO's, right now there at the ankle but we've ordered new ones above the ankle to help with his balance and to walk. Hopefully in a few more months I'll have video of him walking and talking! He's now learned to blow kisses and point to his cow puzzle piece and say moo. He's so funny, but very defiant. Which is all normal for his age.

I've attached a few of my favorite pictures of Matthew in the past yr. Hope you enjoy them.

I have been encouraged by reading other Dandy mom's blogs and I thank you for your honesty and your guidance. You may not know it but your blogs mean alot to me, I hope that I can do that for other moms too.

Until next time, Good Night and God Bless!