Well, it's been about 2 weeks since Evelyn's surgery, and she's really been back to her old self for a good while, now. It's all so cliché; "they bounce back so fast when they're young!", but boy, is it true.
Evelyn actually had an MRI this past Wednesday (6-Feb), and had to be sedated for it, to keep her still enough for a good image. While we really weren't thrilled about her being put under anesthesia twice inside of 10 days, we do take it as a positive that she was fired-up enough (and showing it) for it to be required. ;-) It's actually standard operating procedure at CHOA for them to sedate for MRI's; we were just hoping to avoid it. The MRI was just a check-up to see how her brain's lookin'; to make sure the cysts are still not growing or (hopefully) still reducing in size. We'll be getting those results a bit later.
Anyhow, without further adieu - especially since we've been so remiss with pictures, I thought I'd post some brief video of Evelyn (kind of) eating peaches - she really wasn't cooperating too much (naturally, since I was trying to film it). However, she's really been doing pretty well with eating, lately - we normally try to make her "work" to slurp it off the spoon (which she occasionally does a little bit in this video). Also - because we figure either many folks might be curious or not know "what's a feeding tube look like" - both of which applied to Kim & I prior to all this - I include that on there, as well.
(link to the video directly on YouTube if you have issues viewing it below)
Sunday, February 10, 2008
Friday, January 25, 2008
g-tube
Well, after many long months of feeding Evelyn via NG-tube ("nasogastric feeding tube"; a tube in her nose), in consult with her doctors & therapists, we have decided to have a G-tube ("gastric feeding tube"; a tummy-tube) placed for Evelyn. Evelyn is still continuing to make very good progress with eating by mouth - she is spoon-fed a reasonable amount of oiled-up baby food with most meals (the oil for compliance with the keto diet), and has done very well with swallowing. Sucking still seems to be an issue, but we're working on it. So, Evelyn still depends on a tube for her primary nutrition.While neither Kim nor I really relishes the thought of another surgery - or a (semi-)permanent hole in our baby(!) - all the -ologists and therapists are in agreement with their independent recommendation & counsel. Other than an NG-tube typically being a short-term measure - it's been 6 months now - it can actually be something an inhibitor to re-learning to eat, as your throat is always a little bit open with the tube hanging down it. It also is a general irritant, if you can imagine something always being in your nose & down your throat. So, all opinions & advice are that having the G-tube will actually help Evelyn in the re-learning-to-eat department. In the Aicardi world, about 40% end up with a G-tube, so it's not a majority, but not exactly a trivial minority (see the Aicardi Syndrome 2003 Medical & Developmental Survey for more; Growth & Nutrition; Gastrointestinal).
Long-term, the G-tube is an easily reversible procedure - if you take it out for too long, it actually starts to close up on it's own - so if we do make good progress with Evelyn's eating, it's not really much to have the tube removed. But in the nearer- and longer-term, it lets us continue to make sure Evelyn's getting all the calories she needs, and also provides assurance that if we need to get some medicine in Evelyn quickly - it can be done. Not to mention that your average anticonvulsant tastes particularly awful when crushed (and compounded/flavored liquid versions aren't an option because they typically include sugar, which is off Evs' diet). An additional tangential benefit is that we (okay, Kim) won't have to shove tubes up Evelyn's nose each week any more, something all three of us are looking forward to. And - as much as it will kill us for Evs' cute little tummy to have a hole in it - it will be so nice for her beautiful face to shine freely, unencumbered by tape or tubes. :-)
We opted for a Mic-Key ("mickey") tube, primarily as it's the one most of the other Aicardi families seem to prefer. It is essentially held in by a little water-filled balloon on the inside, with a flat input on the outer tummy surface (see picture at the top). The other type has a more rigid internal mechanism to hold it in place. Though the other type is harder to pull out, we figured if Evelyn got hold of it and was really tugging (from intent, a seizure, or otherwise), we'd rather it "break away" more easily. Also, the Mic-Key is easier to change than the other type, which could require annual trips to the hospital - potentially under anesthesia - to change it.
Of course, at this point, Kim & I have constantly questioned ourselves - did we do the right thing having Evelyn put on an NG-tube way back in August? Are we doing the right thing now? There will always be a little bit of nagging wonder - "Would she have picked eating back up in a few more days if we'd held off with the NG-tube or the Topamax [an anticonvulsant Evelyn was on then that is a known appetite suppressant]?" However, one thing is for sure: We have one of the pudgiest, cutest babies around. We actually refer to her as "monster baby", occasionally, as most people's reaction is, "...She's huge!" - and yes, she is both big, and tall. ;-)
While that's all very cute - which we totally appreciate - it is also something more important: Healthy. Lots of kids with these types of issues end up struggling to gain and maintain weight, making them more susceptible to other illnesses, or making otherwise-benign illnesses more dangerous. If you don't have much weight to lose, your average bout with the stomach flu becomes much more serious. We feel very thankful that Evelyn - like her father - has a healthy buffer, "just in case". ;-)
At any rate, Evelyn's surgery will be Monday, 28-Jan-2008, at Egleston, from around 11am-1pm. It will be at least a one-night stay in the hospital, if not two. While by all accounts, it seems to be a pretty simple & routine procedure, it's still surgery and anesthesia - so all positive thoughts & prayers are much appreciated; in particular for the skill & good work of Evelyn's surgeon and gastroenterologist, and Evelyn's speedy recovery. :-)
Tuesday, December 18, 2007
overdue pictures!
Well... I've caught flak from at least 2 folks now (you know who you are!! ;-) ...) asking for pictures, so I thought I'd finally acquiesce to the request. Five albums, linked to as below! :-)
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Saturday, December 8, 2007
overdue update
Both Kim & I realize we've been quite remiss in updates, so I wanted to try & get a quick one in. Hopefully I can also get some pictures of Evie's Christmas Party at the Center for the Visually Impaired up soon, too. However, we've been so remiss, I'll not wait for that to get an update posted, since I've been so slack lately.
Overall, we feel like Evelyn's been doing pretty well, lately, and that we're seeing some significant improvement from the ketogenic diet. Her seizures come much more clustered now, which makes for a rough time while they're occurring, but gives her much more "non-seizing" time throughout the day when she's very alert and we can work on development. Lately, we're seeing about 7-8 clusters per day. Of those, most seem to be 5 or less individual seizures per cluster, but there seems to occasionally be one or two rough clusters of 15-20 seizures; typically around 6:00pm (I get cranky around then, too).
The hardest part, lately, has been at night - Evelyn's still usually up at least once in the middle of the night with some seizures, but in 3 out of the last 5 days or so, she was up 3 times, so Kim & I were both kind of running on empty headed into the weekend, here. But - it's the weekend. :-)
We're also seeing that she's much more "aware" of her seizures. Which all the therapists & doctors tell us is a good thing - it means Evelyn's "with it" and "present" enough to know that "something's going on that shouldn't" - but it can kind of break your heart sometimes. Typically, with her "longer" clusters, she'll cry out and/or start crying during each seize, which can really just kick you square in the gut. But then it's absolutely amazing to see how quickly she can bounce back once the cluster's over.
One more bit of seizure-related good news: In conference with Evie's neurologist we have decided to start taking Evelyn off of Klonopin. This is an anti-convulsant / relaxant that whose effects are quite similar to Valium. It is a slow reduction process; thankfully she's on a teeny tiny dose - but she'll be done on Christmas day. This should provide her with a bit more awareness, alertness and perhaps more muscle control. Of course the weaning process is the likely culprit for these sporadic sleepless nights lately. :)
Evelyn's physical therapist has said she's been seeing some marked improvements in the past few weeks, particularly as far as head control goes. Evie still can't hold her head up on her own for more than about 30 seconds, but we're hopeful that she's working her way toward full control. :-)
In general, the "dust is still settling" from the move, but it's settling, nonetheless. Kim & Evelyn might actually drive more miles per week than I do (which given my commute to midtown from Lilburn is no small feat!) - twice a week, they head over to therapies in Alpharetta/John's Creek. These will eventually take place at our home (which will be nice), once we finish buying & moving. We opted to "do it the hard way" in this interim period to maintain some level of continuity with therapists, so my aunt & uncle over in John's Creek graciously offered the use of their home for the therapy sessions until we get settled into our place over there. Then once or twice a week, Kim & Evie head downtown (midtown) to the aforementioned-CVI for therapy and the BEGIN program. It actually works out pretty nicely, as I'm working 2 buildings down from the CVI, so I can usually meet them for lunch. :-)
As noted, we are hopefully very near to closing on a house over in Alpharetta. We had a pretty hard-to-meet set of criteria for a house there:
Anyhow, that's about the latest. Apologies again for the slacking in posting - and apologies in advance, as it will likely continue to be a bit sporadic until we've completed the final leg of this move - but thank you again for your continued interest in Miss Evie. :-)
Overall, we feel like Evelyn's been doing pretty well, lately, and that we're seeing some significant improvement from the ketogenic diet. Her seizures come much more clustered now, which makes for a rough time while they're occurring, but gives her much more "non-seizing" time throughout the day when she's very alert and we can work on development. Lately, we're seeing about 7-8 clusters per day. Of those, most seem to be 5 or less individual seizures per cluster, but there seems to occasionally be one or two rough clusters of 15-20 seizures; typically around 6:00pm (I get cranky around then, too).
The hardest part, lately, has been at night - Evelyn's still usually up at least once in the middle of the night with some seizures, but in 3 out of the last 5 days or so, she was up 3 times, so Kim & I were both kind of running on empty headed into the weekend, here. But - it's the weekend. :-)
We're also seeing that she's much more "aware" of her seizures. Which all the therapists & doctors tell us is a good thing - it means Evelyn's "with it" and "present" enough to know that "something's going on that shouldn't" - but it can kind of break your heart sometimes. Typically, with her "longer" clusters, she'll cry out and/or start crying during each seize, which can really just kick you square in the gut. But then it's absolutely amazing to see how quickly she can bounce back once the cluster's over.
One more bit of seizure-related good news: In conference with Evie's neurologist we have decided to start taking Evelyn off of Klonopin. This is an anti-convulsant / relaxant that whose effects are quite similar to Valium. It is a slow reduction process; thankfully she's on a teeny tiny dose - but she'll be done on Christmas day. This should provide her with a bit more awareness, alertness and perhaps more muscle control. Of course the weaning process is the likely culprit for these sporadic sleepless nights lately. :)
Evelyn's physical therapist has said she's been seeing some marked improvements in the past few weeks, particularly as far as head control goes. Evie still can't hold her head up on her own for more than about 30 seconds, but we're hopeful that she's working her way toward full control. :-)
In general, the "dust is still settling" from the move, but it's settling, nonetheless. Kim & Evelyn might actually drive more miles per week than I do (which given my commute to midtown from Lilburn is no small feat!) - twice a week, they head over to therapies in Alpharetta/John's Creek. These will eventually take place at our home (which will be nice), once we finish buying & moving. We opted to "do it the hard way" in this interim period to maintain some level of continuity with therapists, so my aunt & uncle over in John's Creek graciously offered the use of their home for the therapy sessions until we get settled into our place over there. Then once or twice a week, Kim & Evie head downtown (midtown) to the aforementioned-CVI for therapy and the BEGIN program. It actually works out pretty nicely, as I'm working 2 buildings down from the CVI, so I can usually meet them for lunch. :-)
As noted, we are hopefully very near to closing on a house over in Alpharetta. We had a pretty hard-to-meet set of criteria for a house there:
- We wanted the Alpharetta area (and a specific subset of that area) for some schools that have excellent special-needs programs & resources
- We wanted a single-story house, just in case Evie doesn't end up walking well (most places in north Atlanta are 2-story, owing to squeezing more square footage out of the uneven terrain)
- Of course we had some price-constraints :-)
Anyhow, that's about the latest. Apologies again for the slacking in posting - and apologies in advance, as it will likely continue to be a bit sporadic until we've completed the final leg of this move - but thank you again for your continued interest in Miss Evie. :-)
Sunday, November 4, 2007
the teeny halloweeny
Okay, Kim made me title it that way. I swear. ;-) But - we wanted to post the Halloween pictures of Evie as a fairy. :-)
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the big syringe, redux
Well, this time - we remembered the big syringe. So we passed that crucial check-point.
The last Sunday in October, we went to church with my mom & dad. They're fairly recent members at that church, but are still reasonably-well plugged in. But, for context - "they're new there". Anyway, their service starts at 10am. This is also Evelyn's mid-morning meal-time.
I figured it would probably be easiest to just use the Big Syringe to push food in while sitting in back, instead of breaking out the whole feeding pump & bag apparatus. So, thusly prepared, we headed off to church.
Mom & dad went ahead and saved us some seats at the end of a row in the back, so we could get out easily if need be. This later proved to be a fortuitous decision, but at any rate, we went in, got settled, and the service began. We sang some songs & hymns, and many of the normal "churchly" things, and then about 10:15, settled in to begin feeding Evelyn.
It all seemed too easy - Evelyn was sitting quietly & contently in Kim's arms; I was pushing the food in with the syringe; 2.5 mL every 30 seconds or so. This Big Syringe was an even bigger syringe than that last Big Syringe (see the image above; contrasting it with a regular 5 mL syringe) - this one holds 2 oz (60 mL), instead of 1 oz like the old Big Syringe. It was a little tougher to push in, but I attributed that to maybe a slightly-narrower NG-tube (Evie has a new type of tube), and/or the fact that we were using an adapter for the syringe, as the syringe's tip was a bit too large for this new NG-tube.
In any event, other than that, all seemed well and Kim and I were both having an "aren't we a happy little family" moment. The singing wound down, and the preacher had just begun a prayer. Another 30 seconds had elapsed, so I casually began pushing in another 2.5 mL.
"Pssssssfffffffffffft".
Recall, this is in the middle of a prayer at a church service, so it was like the "Psssssfffffft" heard 'round the world, as far as we were concerned.
We watched in horror, as in slow-motion, the adapter broke free from the tube input. However, motion & time were not, sadly, slow enough for me to release my fairly stiff pressure on the plunger of the Big Syringe. As one might imagine, this course of events ended up sending a big, fat stream of KetoCal shooting across Evelyn, Kim, my dad, and an innocent bystander seated diagonally in front of us. I'm pretty sure we also misted some other bystanders.
Taking an aside, to help you comprehend the magnitude of this Rain of KetoCal - I ran a small test at home, after all events had transpired. I loaded the Big Syringe up with water, put the adapter tip on, and shot the water from my parent's back deck clear across their back yard; a healthy 20 or 30 feet. So there's some power there.Needless to say, back in church - time began to speed back up. Quickly. Dad, dripping with KetoCal, started to hee-haw (and grin like an animal that hee-haws) from down the row, while the poor lady in front began to process that she'd just been splattered with an ample barrage of formula. "That's strange... I'd swear I was just hit with a fire-hose. Only one that dispenses baby formula. Except I'm in church. Wrapping up a prayer. Interesting." Luckily, she was also the mom of a 1-year-old, so "she understood" - most graciously. Perhaps even more luckily, she was wearing a water-resistant jacket, so most of the would-be damage was easily wiped off.
Needless to say, after many apologies and some quick clean-up, we hightailed it out of the sanctuary to complete Evie's meal (told you that back seat was fortuitous!). While outside of the sanctuary, we ran into another kind lady we'd chatted with the prior week, who worked as a chaplain at the children's hospital. As we red-facedly relayed the chain of recent events, she advised perhaps Evelyn was just taking the preacher's sermon to heart, and sharing what she had with the world? ;-)
Anyway, being as Evelyn apparently learned last week's lesson a little too well - we skipped church this week. ;-)
Evelyn's Story: Ongoing (Nov 2007)
Since Evelyn's initial discharge from the hospital post-delivery, she's had an up, down, but overall "okay" time of it.
Her seizures started as of on cue with Aicardi; right about 2.5 months of age. It was literally as if somebody flipped a switch. We spent about 12 days in the hospital, trying to get the medications dialed in. We were discharged after we and her doctors were "comfortable with things". Over the next few months, we played with a number of medications (7 in all), and as of this writing, are seeing reasonable reductions in seizures since having started the Ketogenic Diet.
In October of 2007 we moved from Phoenix, AZ to Atlanta, GA, to be closer to family for support and such.
Overall, we feel like Evelyn's doing really well. Her seizures are definitely a challenge for the best of neurologists, but we've got the best ones we can find "on the case", and between seizures, Evie has been much more alert and able to play, which has been great. :-) She still doesn't have head control, but now that we're able to do a bit more with her in between seizures, we're working hard on that. It could be a while; it could be soon - you never know, but we're just working on it as hard as we can.
So far - so good! :-)
Her seizures started as of on cue with Aicardi; right about 2.5 months of age. It was literally as if somebody flipped a switch. We spent about 12 days in the hospital, trying to get the medications dialed in. We were discharged after we and her doctors were "comfortable with things". Over the next few months, we played with a number of medications (7 in all), and as of this writing, are seeing reasonable reductions in seizures since having started the Ketogenic Diet.
In October of 2007 we moved from Phoenix, AZ to Atlanta, GA, to be closer to family for support and such.
Overall, we feel like Evelyn's doing really well. Her seizures are definitely a challenge for the best of neurologists, but we've got the best ones we can find "on the case", and between seizures, Evie has been much more alert and able to play, which has been great. :-) She still doesn't have head control, but now that we're able to do a bit more with her in between seizures, we're working hard on that. It could be a while; it could be soon - you never know, but we're just working on it as hard as we can.
So far - so good! :-)
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