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Wednesday, September 30, 2009
No, Really, I HAVE Updated the Website
My apologies to everyone who received 4 emails yesterday saying that I had updated the website, when I really hadn't. The code that runs the blog here and on my family website is something that I picked up for free as a package solution. As it turns out, it looks pretty but it has an annoying habit of slowly eating up all the resources on the web server until it crashes about every three weeks. This is inconvenient to say the least. So I have had to re-write the whole lot, and I haven't been able to update while I did it. Yesterday I was testing the final code and OOPS! I tested it too well and sent out messages from my test server before I realized that they had gone out. So, my apologies.
The new code is now up and running. It shouldn't look any different (except that I did make the side borders a bit thinner). If anyone finds anything wrong, hit the "Contact Us" and let me know please.
Now that I have that fixed I will be able to put up all of the exciting things that have happened in the last few weeks - including Owen turning three and some big milestone achievements. But alas, it is too late tonight to attempt those things so I will have to leave you in suspense :-)
I will close by thanking everyone for their kind comments in the previous post. You really are all wonderful people to know and I am grateful to you all.
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Monday, September 14, 2009
FetalHydrocephalus.com Turns Three!
Actually, the 3rd birthday happened yesterday, but I was too tired to write the entry and it's going to be a long one :-)
On June 1, 2006 we got our diagnosis during a routine ultrasound and there began the great journey to learn about hydrocephalus and to figure out what this meant for our baby. We read the little pamphlet they gave us at the OB's, we Googled until our fingers were raw. We learned very little. By August we were frustrated with the lack of information, lack of a plan, the vagueness of the responses from the high risk OB and the whole thing in general and we started seeking out other doctors. We got excited about the possibility of surgery in-utero - only to find out that it is no longer done. We would meet one doctor and they would tell us that things were horrible, grim, terrible - and then meet another who would say it probably wouldn't be that bad. We could find many websites that would tell us the medical mechanics of what hydrocephalus was - but not a single one that told us what life was really like for these kids.
I had a stack of papers 5 inches thick with information that I had printed out from various websites and pamphlets. I had emails here and there from other parents I had managed to track down through various list servers and such. I was also having contractions at 32 weeks so I had to go on medicine and slow way down, had gained nearly 50 pounds (I only started out at 100) and was fairly immobile because I had an enormous head stuck under my rib cage. By August 21st I had lots of energy and no place to put it (I'm not good at just laying on the couch) - so I got out my laptop, registered the domain FetalHydrocephalus.com and got to work. I decided that never again, if I could help it, would a parent have to sift through all the stuff that I did just to get the basics. I am a software engineer by trade, I write websites and other software for large corporations, it was time to put that knowledge to good use.
It took me a few weeks to type it all in. It was just as much therapy for me as I was hoping it would be for anyone that might later stumble upon my work. We had just found out about the cord blood, we were switching our care all down to Duke and we felt we were finally making some progress on a birth plan. In the meantime I was typing during my hours on the couch.
On September 13th, 2006 I finally felt that it was ready to go live. I uploaded what I had done and sent out an email to my family and friends asking them to go take a peek. There was about half the content that there is now, and the graphics were not nearly as polished but it was out there. I had no idea whether it would do anything for anyone else or not, but I felt better myself for having gone through the process. Owen was born just 12 days after the website was.
The first person to hit the "Contact Us" button was on October 15th, 2006 (if you're reading this Monica, it was you writing when you were 24 weeks pregnant with Faith!). For the next few months there was an email here and an email there...and then a few more a few months later...and then they just kept coming. I have met the most amazing families from all over the USA, Canada, China, Japan, the Phillipines, Africa, Australia, Ireland and more.
In August of 2007 I put the survey online. I wanted to be able to gather more long term data to be able to give to parents. We currently have 194 cases and some of the children are getting old enough for me to start publishing that data soon (go update your survey if it has been a while, please!). But in the end something remarkable happened that will provide a much better resource for people just getting their diagnosis, and for those with older children too. When I put up the feature that allows parents to put a link to their own blogs I wasn't sure how many I would get.
As of this moment there are 21 blogs, and 35 stories on that page. The blogs in particular are the things that have amazed me. That's 21 different children with hydrocephalus - and we all know that each child with hydrocephalus has their own little brand of it with their own little quirks. And these blogs show the day to day life of the children and their families - anxious parents just getting their diagnoses have real stories and real experiences to use as a window into their future life, and parents of older children have a network of people to ask questions of and to learn from each other. Between the blogs and the people that I have met through email, I can often now direct a new parent, or a parent with a particular issue to another parent that has already been through the same thing with the same type of hydrocephalus. The survey will have its uses, but it's the blogs that have built a real community.
My life is very different now than I could ever have imagined three and a half years ago. It has been a long, hard road - but I feel that my life is fuller too. I now feel that I have my priorities straight. I have learned to savor the joy of the moments when things are going well. I have learned how to say "Thank You" in a much deeper way than I ever could have before - to doctors who have gone the extra mile, to Mom's and Dad's I have only met online or once at Duke during an infusion that have nevertheless been a huge source of support, to my own family who have been there at a moments notice during the not so good days - and shared with us in the moments of Glory when a new milestone is reached. And then there is the amazing Owen and our equally incredible daughter Sammy that have made it all worthwhile.
And so to every Mom, Dad, doctor (especially Dr. Gerald Grant, Owen's neurosurgeon, who has spent countless hours explaining medical terms, checking that I have described them correctly and helped me to answer questions that were beyond my knowledge), therapist, family member or friend that has lent a picture, a bit of knowledge or wisdom, or contributed their own life experiences, I say a BIG thank you for all your help in making this website a success. At my last check 32,781 different people have wandered in and benefited from what we have done here. Happy 3rd birthday FetalHydrocephalus.com!
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Saturday, September 12, 2009
Happy One Year With My Cochlear Implant!
There are more things to post about the previous week's happenings, but today I'm just going to take the time to celebrate. As of today, Owen has had his cochlear implant turned on for a full year. It's incredible to think that a year ago he had never heard our voices, or fireworks or music or anything else. He didn't say Mama when he was lonely, he just cried. This past year has truly been a miracle with his hearing.
Rather than trying to recap the whole year in words, I decided to put together a video that shows all the highlights. Click on the picture below to see the "Best of" video for Owen's hearing. Some of the clips you may have seen before, but there are new ones in there as well.
I can't wait to see what the next year brings!
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Thursday, September 10, 2009
We Are Back Home!
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This seizure was not nearly as severe as the previous one. I'll post more details tomorrow, but we are home now and happy to be so...
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Here We Go Again
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Mr. Owen had another seizure yesterday afternoon. This one wasn't as bad and this time we were prepared at home. He was napping and his aide Tessa noticed that he was shaking. She got Daddy - I was off getting his sister from school - and they waited 5 minutes. He was still seizing after the 5 minutes so they gave him Diastat. Two minutes later the seizure stopped. His O2 dropped a bit too so they gave him some of that but he mostly kept it up on his own. By the time he got halfway to the hospital he was waking up though. He's mostly back to normal but we're waiting to talk to the neurologist before we go home. 2 seizures in 2 weeks after no history of them is worth checking out.
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Sunday, September 06, 2009
We Have a Surgery Date!
We have our surgery date! Owen's head will get smaller on November 4th. It's a bit farther out than we would have liked, but it's not too bad. They did offer us October 12th, but that is a Monday. You have to meet the surgeons the day before the surgery - so for a Monday the previous business day would be Friday. However the neurosurgeons don't work on Fridays so we'd have to meet them on Thursday. Since the pre-op tests and meeting take most of the day, we'd have to fly to Texas on Wednesday for surgery the next Monday. That's 4 extra days of rental car, hotel, exposure to peoples in restaurants and such that might give him a cold so we couldn't have the surgery, and 4 extra days away from Owen's sister. So we decided on the next possible date which is November 4th - a Wednesday. We'll fly out on Monday, meet the surgeons and do pre-op on Tuesday, have the surgery on Wednesday. Out of the hospital by Saturday or Sunday and fly back on Tuesday. I hate to wait, but he's had the big head for three years, three more weeks isn't going to make a difference.
The bummer here is that both kids will miss Halloween. Owen can't have the surgery if he has a sniffle or the blood work shows any sign of infection - so it's out of school for both kids for the previous week. Owen's sister loves Halloween, so that's going to be a bit of a blow for her. I have arranged for a Halloween party here at the house for some of her friends two weeks before Halloween though - which should help make her happier about it because she loves parties.
Two months seems like a long time away, but I'm sure the time will fly with all the school stuff coming up. The timing is good too in that he should be mostly healed before the big holidays hit.
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Wednesday, September 02, 2009
Owen is Going to Get a Smaller Head!
Just wanted to do a quick update tonight to say that we have finally made a decision on the cranial vault reduction surgery. We talked to Dr. Fearon, the craniofacial surgeon at the Craniofacial Center in Dallas, on the phone this morning. We had a long list of questions and he took the time to answer every one.
It does not appear that Owen's cochlear implant will have to be moved at all. The worst complication that he reported with this particular surgery was a child about 15 years ago that was very sleepy for several weeks after the surgery. While that child recovered back to their baseline eventually, he said that it taught them to do several smaller surgeries rather than one big one with radical changes. They have not had an infection with this surgery. He also uses a technique that saves most of the child's own blood that is lost during the surgery and gives it back to them - vastly reducing the need for transfusions.
The basic idea is that they use the "bubble" (aka the reservoir) on the shunt to pump out some of the CSF. If there is a lot of fluid they may tap the shunt (put a needle in the reservoir) but they try to just pump it down. As the CSF is drained the ventricles become smaller and the brain will compress down. Once they have drained the CSF that is safe to remove, they take the skull and reshape it to match the new shape of the brain. They will work on the back of Owen's head for the first surgery - which is the area with the largest amount of extra weight. Then, if he needs it, more surgeries will be done in future years.
The surgery takes about 2 hours, though they are in the OR for about 4 hours - there is a lot of prep time. Dr. Fearon already has all of Owen's latest CT's and MRI. We'll go down the day before the surgery to meet Dr. Fearon and the neurosurgeon to ask final questions and for them to have a last look at the actual Owen to make sure everything is as it should be. He'll be in the hospital for about 4 days.
In a stroke of Providence my brother-in-law Tom is currently living in Dallas with his son Ryan who is on a AAA hockey team there for the year (Ryan is a very good hockey player and has traveled all over North America to play). They are staying just a few minutes away from where we will be at Medical City Hospital. We don't get to see them very often because normally they live in Colorado with the rest of their family. Tom has offered to help us with airports and transportation and such which will be very helpful. Plus it's always a good time to hang out with Tom - maybe I can even convince him to make some of his famous wings while we're there! And I'll get to be an Aunt for a few days, which is rare because all of my nieces and nephews live in other states.
This hasn't been an easy decision to make - it was even harder than the cochlear implant surgery which was a much smaller procedure but we spent ages agonizing over that one anyway. Once again, however, we feel that we have to give Owen the best chance possible for development and it has become clear that his head size is really holding him back. My husband and I have joked that when Owen wakes and tries to sit up he's going to fling himself forward because he's so used to moving that huge weight!
We don't have a surgery date yet. It takes some coordination between the craniofacial team and the neurosugery team to find a date when they can all be there so we expect to hear back in a few days with a final slot. Then we'll have to make plane and hotel reservations. There is still a lot to do, but at least now we have made the decision and feel that we can just get on with getting it done.
Did I say a quick update? This is what happens when a computer programmer that types well over 100 words per minute sits down at a keyboard and writes a "quick" update. Have a good evening!
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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 doctor. | | | |