About

I’m a dad learning to live with my son Declan’s hydrocephalus. I plan to chronicle his story and ours in hope that it can provide some information and comfort for others experiencing similar situations.

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  1. Linda K. Flaherty

    We have a “Declan” too and he’s 8.5 months. I am about to read about your story but can’t wait to reach out first as our “Dex” had a head MRI done last Fri. His Ped was concerned about his larger than average head size. Although all his developments are perfectly fine. His ventricular system is slightly prominent and he has a non obstructive “mild compensated hydrocephalus”.

    And as a parent- I’m sure you can imagine what I’m going through right now. I never ever want my son’s development to ever be comprised. The thought of having a shunt put in scares me. We are seeing a pediatric neurologist on Monday for a second opinion on what we should do. The first reco was to do nothing and keep on monitoring his head size and development. Another MRI down the road is suggested.

    I want to hear good news about kids who (unfortunately – at one point) are born with this condition. And I thank god and modern technology that we can cure it.

    Pls let us know what you think and what readings we should do..

    Last but not least- pls keep our Declan in your prayers.

    Your Declan is super cute.

    Regards,
    Linda

    • First, I hope the appointment goes well tomorrow. I know that it is not an easy thing.

      Second, Declan is doing well. I need to write an update, and hope I’ll be able to do it soon. We’ve had a few false alarms when he’s had a pretty hight fever, but that’s about it. Declan’s development is right on track.

      Last, as far as reading, the best resource I know of is the Hydrocephalus Association website http://www.hydroassoc.org . They have a ton of information.

      Thanks Linda!

  2. Hi there,

    I just started my blog a few days ago, on my son Carson, who has congenital hydrocephalus! I am so glad I have stumbled upon your blog because we both are looking to provide some comfort for families who are experiencing what we have gone through. Its a true blessing to be able to bring some relief to those who may, as you said, be mourning the loss of their perfect baby. Just as you did, we did too. I haven’t had a chance to read your whole blog yet, but trust-I will.

    Thankyou for sharing!

    Chelsea

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