The Amazing Owen
Home Account Search
Back Home
They declared him cleaned out and cleared for takeoff last night.  We got home about 7:00. 

As you can see...Owen was very happy about that!


Mmmmm Jello
So, on Friday morning I went in to find that Owen's diaper was bright red - never a good start to the day.  He was also lethargic and heaving.  It seemed that perhaps Owen was missing the hospital Jello again.  When we got to the ER he was very dehydrated, which made no sense because he had been drinking normally the day before.  Blood tests were all out of whack - white blood cells were high, clotting factors showed that he wasn't clotting at well as he should have and an ultrasound showed that his intestines were swollen.  Oh, and he was pretty constipated too.  Looks like his intestines were absorbing all the liquid in his body and using it to create swelling.  They have lots of cultures being sent out for testing and we had X-rays and an ultrasound.  We found that his blood was not clotting properly and Vitamin K was administered.  

So two days, several bags of fluids and a boatload of vitamins later things are looking up.  His blood work is back to normal and he's feeling better.  They are doing a clean out this morning and when he is poo free we can go home.  

Here is a picture of Owen from last night.  He may be in the hospital but that doesn't mean he doesn't need to keep up with his peeps!

Hopefully he will poo soon and we'll be able to go home today. We'll have a fair bit of testing to do in the next week or so to be sure that there isn't an underlying problem that caused this, but for now we're doing much better!
Forever Days
There are some days that you know will stick in your mind forever - that you are certain you will recall vividly when you are 90 and be able to remember every detail.  Every parent carries around a collection of these days in their pocket and brings them out every now and then.  We have a large assortment from our daughter - she was our firstborn and everything was new: the first time I was called mama by my own child, her first steps, her first day of school, her first set of straight A's and so on.  I'll admit that when we had our second child that I was afraid that things wouldn't seem as amazing as they did the first time.  I was wrong.  If you read my last post you saw that Owen has finally achieved independent walking with his walker.  I was amazed the day that we saw that and could not wait to post it to share with the world. 

But somehow it didn't seem completely official.  There was still one last step to make it real.  You see there have been many, many people that have helped Owen along to get him where he is today.  Each and every one has been vital to improving Owen's quality of life: Dr. Kurtzberg who gave us our first hope with the cord blood, Nacol the physical therapist that has been with Owen since he was a month old and has never given up, her boss Kathy who is ever the optimist about Owen's future, past aides, other therapists that have come and gone, Pat the special ed teacher who can bring out the best in him, Julie the music therapist that always makes him smile, Angel in OT (and Vesna before her), speech therapists like Melissa who have known him for years and keep up the effort even through enormous setbacks brought on by seizures, Dr. Fearon in Texas who takes on the kind of surgeries that other plastic surgeons don't want to deal with because there isn't enough money in it - but whose efforts in making Owen's head smaller have had a life changing impact, along with Dr. Swift who did the neurosurgery portion of that head reduction surgery, Dr. Buchman who placed a cochlear implant for Owen when many others would have said it wasn't worth it because the odds were that due to his brain damage he would never talk - he understood that the unbelievable value of the human connections made through hearing are worth it even if speech isn't possible, Dr. Gallentine who has finally gotten Owen's seizures under control and without whom we would not have intellectual development at all, Barbara the nurse who has worked wonders in the last months to push Owen to his greatest potential.  And that doesn't even mention the support staff for all of these people that help with getting appointments, scheduling surgeries and everything else and other therapists that have come more recently.  Owen has a ginormous support staff that boggles the mind when you stop to think about it.

But still there is someone missing from that list.  Farther back than all of them but Dr. Kurtzberg who was our first contact at Duke - there was Dr. Grant.  Dr. Grant has taken care of Owen since the day he was born.  Through all of these tough decisions he has been there to help us know when it was time to wait, and when it was time to go for it and commit to another surgery.  And many times it has been he who has taken that risk on personally and performed the surgery.  He has cared for Owen and about Owen from the very beginning.  When Owen went under the knife for the last time in March it was with the hopes that perhaps the surgery would help with Owen's walking.  Yet another leap that we all took together hoping for the best, but not knowing what the outcome would be.  And so it seemed that somehow the progress wouldn't be official until Dr. Grant got to see it for himself. 

Today we went down for a checkup and I brought Owen's walker.  Sammy set the walker down out in the hall and I put Owen in it.  He grabbed on and headed straight down the hall as confident as could be.  He tried to get into the doctors' workroom and I had to turn him around.  He headed all the way back down the hall and went straight to Dr. Grant and put his arms up to be picked up.  There really aren't words to describe the feelings in that sort of moment.

I only got a few seconds of video because he took off so fast.  I have debated on whether or not to post it because it's so short compared to the walk that he took, and yet it seems sad not to at least post that little bit and so I will. 


This is definitely a forever day.  Seeing Owen walking down these halls where he has been carried since birth was really something.  Each and every step that we have all taken to get here were worth it to see the steps that Owen took today.

I also can't close without a mention of the Hydro Family Gathering that happened on June 23rd.  This deserves an entire entry all its own and I will try to get through all my pictures and put one up soon.  It was an incredible day.  18 families met up in Nashville, Tennessee.  They came from Virginia, Georgia, Washington State, Nebraska, Oklahoma, Missouri, Wisconsin, Ohio, Texas, Idaho, and Kentucky.  (If I missed your state email me and I'll add it).  This is another one of those things that is really hard to describe in words. To spend time with people who really understand your way of life, to feel truly at ease with your child who is "different" from the norm because in this group they are normal.  And it is awesome for the siblings too - to meet others that share their lifestyle and understand what they have been through.  I will post lots of the wonderful pictures that we took in the coming days, but for now here is a group shot:


And a link to the Shutterfly page with lots of pictures on it: Shutterfly Share Page (created by Josephine Anderson)
Newer Posts Older Posts

Legal Disclaimer: While every effort has been made to make certain that the information contained in this website is accurate, it must be remembered that the content is managed by a parent, not by a doctor. Information contained here is for general support purposes only and is no substitute for the care of a physician.