The Real World: Wilmington

This is the true story … of four family members … who chose to move to the south … live together and have their lives blogged … to find out what happens … when people stop being polite … and start having babies … The Real World: Wilmington.

Grateful April 5, 2011

Filed under: Uncategorized — Christine @ 8:51 pm

Grateful pretty much sums up how I’m feeling. Grateful for the abundance of support we’ve had from friends, family and even strangers. Grateful for the news we got at Miles’s recent appointment at Duke.

Jamie and I became more and more emotional and anxious as the appointment approached. Each time a friend or family member told us they’d be thinking of us and Miles my heart would swell a bit. Knowing that others were supporting us and rooting for our little Miles made me feel very lucky.

We decided to attend church the other weekend because we’re having Miles baptised there soon and since we’ve been to church all of one time since Christmas we thought it would be a good idea to get reacquainted with the place. Normally (when I say normally I mean the handful of times we’ve gone to church) I sit quietly in the back with Jamie after dropping Elly off in the nursery, listening, singing and trying to relate what the pastor is saying to bettering myself somehow. Each Sunday the pastor invites people to share good news and to share prayer requests. Jamie surprised me by standing up and telling everyone a bit about what we were going through with Miles, who was resting his head on my shoulder sound asleep, and that we were heading to Duke to find out more about his condition the next day. I whispered to Jamie that we needed to get out of there right after the service because I knew I wouldn’t be able to hold it together if people were coming up to us offering their support. Well, we didn’t have a chance to escape the kindness, it was like a warm knit blanket coming towards us and there was no way we weren’t going to get wrapped up in it.  These people don’t even know us, yet they were taking the time to talk to us, hug us, love on Miles, and pray for our family. Wow.

Here’s Miles wrapped up in the prayer shawl that was hand knit by a member of the church and given to us on Sunday. We used it as his blanket on his appointment day.

At Duke we were given the news that Miles has benign external hydrocephalus which typically resolves on its own by the time a child is 2 or 3. We saw his brain scan and the doctor showed us where Miles has excess fluid. He has treated thousands with the same condition and said he was 99.9 percent sure that Miles will be perfectly fine without needing any treatment. By the way, I think that doctor is the smartest person I’ve ever talked to, I mean, he operates on tiny brains AND answered all the questions on my list before I could even ask them.  We will be taking Miles to our pediatrician each month to get that noggin measured and to continue watching his development to make sure he’s on track, but all is expected to be fine!! We are over the moon! We received good news, but I can’t help but think about all those other kids and parents we saw who were also at Duke waiting to see the pediatric neurologist. I’m sure many miraculous things happen at that children’s hospital but it’s still a sad place to be.

At dinner that night I said I wished we had been able to get the appointment at Duke sooner so we weren’t spending the past month wondering what we were dealing with but then I thought about all that we’ve learned during that time. I learned to try hard to live in the moment and not waste my days worrying about what might be. I learned that Google  is not my friend. I learned to be so thankful and appreciative each day that my kids are healthy and happy. I have a lot to be grateful for.


10 Responses to “Grateful”

  1. Ang Says:

    Yay!!!!!!!’ best news ever 🙂 super impressed by you as always. BIG HUGS!

  2. Courtney Says:

    This is the sweetest story I have heard in a long time. God is good. xo

  3. Kelly Says:

    So happy for you all! Thanks for sharing. I’m so glad you were able to gain something positive from this experience and that you received such good news!

  4. Sharon Mottram Says:

    Thankful for the good report and answered prayers, Praises to God for answering all the prayers that went up in Miles behalf! Continue to rejoice in God’s goodness and mercy!

  5. Meg Says:

    So happy to hear the good news, we have been thinking a lot about you guys lately. Hugs to everyone. Hopefully during one of your NOVA trips we will get to meet Miles. xoxo

  6. Jenny Says:

    Hooray!!! I’m so happy for you and your family. That’s great news! That google can really fuel the fire!

  7. Erica Says:

    I found your blog while looking up benign external hydrocephalus because I am knitting a winter hat for a baby with it. I read through your story, I’m glad to hear Miles will be just fine!

  8. Amanda Says:

    Hi i just read your story because i have a 6 month old daughter just diaganosed with the same condition , i was just wondering at what size did your sons head measure when he was 6 month , also did you find it got much larger as he got older or has it started to go down at all . I am waiting to see the pediatrition at the moment as my doctor couldnt really answer any of my questions as she had not seen a baby with it before , any help would be greafully appreciated , thanks Amanda

    • Christine Says:

      hi amanda! i can’t remember what his head was measuring at at 6 months, but i can tell you he’s 14 months now and his head started to plateau months ago and he never again had a huge spike in growth after his diagnoses at 5 months. his head is around 49cm now. he’s been developing totally normally as well. i found a BEH group on facebook that you can join to get in touch with other moms who’ve been through this. good luck with your baby girl, i will be thinking about you both and hoping for the best! our neuro told us this condition just about always resolves itself so that’s what we kept holding on to :o)

  9. Maria Says:

    Hello. I came across your page while researching external hydrocephalus. I complete relate to what you went through. At our son’s two-month appointment, his doctor became concerned with Anthony’s head size. His head circumference had jumped from 75th percentile at 2 weeks to 95th percentile at 2 months. The doctor ordered a head ultrasound which was done the following week. The technician who did the ultrasound scared my husband and I when she ran out of the room after looking at an image and returned a few minutes later simply to say that the ultrasound was complete and to call our doctor ASAP for results. The doctor’s appointment was 2 days later, when the doctor informed us Anthony has external hydrocephalus. He requested an MRI to be sure, which was done the following week. These were the longest two weeks of my life. Reading your blog brought tears to my eyes, to see there’s someone out there who experienced almost the same situation we did.
    It is very reassuring to read that your son is doing well and no treatment was needed. We have an appointment with a neurosurgeon this week and for some reason I’ve been feeling scared/anxious/worried. Reading your page made me feel better. Thank you for sharing! Your son is a beautiful baby boy.

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