Fetal Hydrocephalus

The Amazing Owen

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Friday, April 13, 2012

New Wheels at Last!

OK, we'll get to the wheels in just a second. First though I suppose I should update on the recovery from his Chiari decompression. The incision had been healing nicely but in the middle of the night about a week or so after the surgery Owen thought that it would be fun to tear off his bandages and scratch at his incision causing it to open back up in one area. Not a good choice. Despite our best efforts to keep it cleaned out it got infected so we tried giving him Keflex to fight the infection but it just didn't go away. So last Friday we headed back down to Duke where they cleaned it out and stitched it all back up. They also changed his antibiotic to Clindamycin. The incision is now looking much better and I think we're nearly there now. We have to go back on the 24th to get the stitches taken out. Otherwise he is doing very well. The Clindamycin has made his tummy feel icky despite large quantities of probiotics, but we only have a few days to go. The choking on liquids has now completely disappeared unless he's just gulping his drink too fast. He was really in a great mood until his tummy started feeling sick. He thought very hard about having a seizure yesterday, but thankfully Jigsaw was on the job and helped us to head it off. He is just now getting his strength back so it's still going to be a good while before we can tell about the walking. He is getting more and more daring about what he is willing to try though, so we're hoping that is a good sign. So, onto the wheels! As you may recall we started the process of getting a new wheelchair back in January. We wanted something lighter that he could move on his own if he so desired. Well today it finally came. It's a Ki Tsunami Little Wave. I should have thought to take a picture of it next to something with some scale because it is seriously elfin in size. Here he is today giving it a whirl: And he even played with the wheel a bit. I don't think he has any idea how to actually make it move yet - but at least he's curious about it rather than screaming about it. And when Daddy did wheelies with him in it he squealed with laughter! Here are some views without him in it: This thing is ridiculously light, I just can't believe how easy it is to push along. I'm going to love it I just know it. We had originally thought that we might donate his old Bingo stroller but I don't think that's an option. As much as I'm hoping his new one will save my back and provide opportunities for independent mobility, the old one still has too many uses. For instance, here is Owen last week after getting his new stitches: The Little Wave doesn't recline and it doesn't have a full back so pushing him around after sedation won't work. We also found that while the Little Wave goes like gangbusters on flooring or concrete, it's not so great on our gravel driveway where we go walking every day in warm weather. So we will keep the Bingo for those times when the Little Wave won't be able to do the trick. It's going to take a bit to figure out the logistics of how to haul what we need on a smaller chair too. You can put enough stuff to survive for a week on the cargo bag I made to fit under the Bingo. There isn't anywhere near as much room on the Little Wave but I think I can make it work. His oxygen tank fits nicely behind the seat: I will probably make a small bag to tuck that all into so we don't have tubing and a mask falling everywhere, but it is convenient how it fits in there. I have a temporary bag that I have hung on the back for now, but I'll need a smaller one so I'll make that in the next few days. You can buy them of course, but insurance won't cover a bag (it's a convenience item apparently, rather than a necessity to carry diapers, meds, food and toys) and they are really expensive to buy. So tomorrow I'll get some cool fabric and make something that fits and looks appealing to a five year old. Zoom, zoom, zoom!
TAGS: Chiari Gear
Posted By Michelle At 4/13/2012 9:01 PM • Comments (1)

Tuesday, March 27, 2012

Ode to a Seizure

And in with all of the useful information on this site, you get the occasional piece of very amateur poetry... Ode To A Seizure by Michelle Higgins Somewhere in the brain a storm begins to lurk It starts with a tremor and progresses to a jerk. Normal patterns are as random as can be But sudden slow rythms show up on EEG. Seizures you see, come in all kinds From tonics to clonics they mess with our minds. We spend our days trying out new meds, We sleep off their effects, snug in our beds. As the storm continues to build and to grow We find solace in one thing we all know. That this too shall pass as all storms do And then we'll wake up to begin life anew.
TAGS: Seizures
Posted By Michelle At 3/27/2012 10:43 AM • Comments (1)

Tuesday, March 20, 2012

Recovery Update

Once we get home it is always harder to update since we have so many everyday things to distract us, but I wanted to put up a quick update before I went to sleep. Owen continues to get better each day. He still sleeps a lot and the incision site is still tender if you touch it in just the right way, but overall he is doing much better than we had expected at this point. He isn't eating at his usual level either, but then again he hadn't been eating and drinking all that well before the surgery - we are beginning to suspect the Depakote on that. The good news is that even though there is still discomfort and a lack of stamina, he has actually been in a good mood. We had been through a few months of severe crankiness before the surgery and for the most part he seems to be happier now. And if he's happier now I can't wait to see what he'll be like when he has completely healed. We have also noticed that he isn't choking and spluttering his way through his drinks now like he did before the surgery so that is another hopeful sign. It will be a while before we can really tell anything about the walking though. He has pulled himself up to stand twice, but it really wipes him out and unless he does it himself we haven't been pushing it. So, if you are going to need to recouperate, it's nice to do it when it's 80 degrees out and bright and sunshiny! I brought out the blanket and we hung out in the sun yesterday. In between naps Owen was feeling a bit more lively and you can see below that he was in a good mood. Today we took off the bandages and gave him his first shower - no laying down in the tub in the water for 6 weeks, but we can use the hand sprayer for a shower now. I had given him sponge baths to clean him up when we got home, but today we started washing the gunk away and that has to feel better. It's going to take some time to get rid of all the glue and stuff, but at least maybe it itches less now. So, all in all things are going well and we just need time for everything to heal.
TAGS: Chiari
Posted By Michelle At 3/20/2012 10:09 PM • Comments (6)

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