We've been remiss in updates the past month or two, so thought we'd send one out, since there's been "some action!"
The reader's digest version is that we're currently in Scottish Rite Hospital with Evs - where we've been for 6 days & counting - getting some tests run to try & explain some otherwise "unexplained pain" that's been plaguing her for the past few weeks. We've got the near-term steps defined - believed mostly abdominal/GI issues - and pending the outcome, hope to be out of here by early to mid-week next week (perhaps 17-Mar or 18-Mar). Evs, Kim & I are all doing "okay", but obviously would prefer not to be here! :-)
Now the largely unabridged version for those interested (or the patience ;-) ...)...
For the past 3 weeks, Evelyn has had what we have only been able to describe as "unexplained pain". This would present to us as her being extremely "tight" and "stiff" (on a child who's laundry-list of particulars includes "low tone"), arching her back, agitated, and often fussy if not outright howling. While perhaps not outside the realm of possibility of "typical" behavior for a "typical" 22-month-old, after a few days, it started to get concerning.
Our initial suspect was teeth - Evs has always been a delayed teether, and most who have seen her gums will testify to the fact they look "painfully full and ready to pop". ;-) She has had a number of teeth (both molars & incisors) cut in the recent days and weeks, so it seemed an obvious conclusion. However, after visiting 2 dentists who could find "nothing remarkable", and several more days of the continued behavior, we started to get more worried.
We next turned to her GI tract as the suspect. Many Aicardi kids have a number of issues in that department, and being on the Ketogenic diet can certainly exacerbate things. After several visits to her pediatrician - who also finally managed to observe or instigate some abdominal pain - Kim took her to the ER at his recommendation. The net result of that visit was "not much".
We took her back to her Pediatrician the following Monday (2-March), with Evs seeming her normal, cheerful, bubbly self. Of course, the next day, things picked right back up where we'd left off. By late in that week, we'd managed to raise the issue with enough of the Ologists to get them to order a complete GI series - pretty much following some barium from top to bottom (in every sense of the word). Results, as with everything so far - were "not remarkable".
The next Monday (8-March), Evs was again seeming "pretty okay" in the presence of her pediatrician (who I guess by now was thinking he could heal through laying of hands ;-) ...).
After a great night, Evelyn woke up Tuesday (9-March) with a prolonged seizure. It wasn't overly-dangerous - she still has several seizures every day - but it went beyond the pre-defined time-bound by our neurologist, and Kim exhausted our "at-home" emergency protocol options. The seizure seemed to move from her "standard" seizure into the exacerbated "tight" and arching position - precluding putting her in a car-seat - So, Kim & Evelyn took a ride down to Scottish Rite via ambulance.
The seizure was dealt with shortly after arrival at the ER, but the exacerbated tight arching & agitation still continued, and given the past 2 weeks, the ER doctor opted to have her admitted.
The focus then shifted to "what's up with the apparent pain episodes". While not thrilled to be in the hospital - or what was required to get there - we were not necessarily unhappy to have her admitted, to get some stronger attention on the "pain episodes" (which, heretofore, had taken some stamping of feet to get the Ologists' attentions).
Thus was kicked off 6 days (and counting) of admission to Scottish Rite to figure out "what's going on".
After the neurologist-on-call - along with Evelyn's usual neurologist - witnessed one of Evelyn's "pain episodes", they concurred that it was "pain" - as opposed to a "neurological event", which is an easy thing for the Ologists' to chalk hard-to-explain things up to in kids with neurological disorders. This, of course, was a relief to us, but the question remained "what was it?"
Focus then shifted back to GI. We started off with a ultrasound of pretty much every organ in Evs' little torso that can be seen by ultrasound, mostly looking for kidney stones, gallstones, etc. Thursday, still seeing continued pain episodes, our attentions turned to reflux as the possible cause. Evs has had some reflux, but our thinking perhaps that for whatever reason, something had changed & it was now worse. Thusly, we started a 24-hour pH probe on Friday (13-Mar), to measure acid levels in her esophagus over time.
The analyzed output seemed to indicate that Evs was indeed having some reflux events, but at least in the doctor's analysis, more as a result of her arching & crying, than as the cause of it. To put that theory to bed one way or the other, Evs then went NPO (nothing to eat or drink; IV fluids only) for 24-hours - theory being that if there was nothing in her stomach, there'd be nothing to reflux - so if the "pain episodes" continued, reflux couldn't be the root cause, but if they diminished, perhaps it was the root cause.
Other than being grumpy - markedly different from the "pain episodes", and certainly understandable given being cooped up in a hospital bed and hungry(!) - Evs seemed quite a bit like her old self on Saturday (14-Mar)! Not 100% by any stretch - but "more like herself". Accordingly, we were feeling optimistic that we were finally - at long last - on to something!
In consult with the GI doctor, we opted to continue another 24 hours, just to see how things shook out. After sleeping all night Friday night - a welcome relief to all involved - she awoke Sunday (15-Mar) okay, but then started up an atypical seizure (atypical for her, anyway) - one that is kind of a "crunching" motion, with her abdomen literally shaking. It's one we've seen before, just quite rarely - it is possibly a more "classic" infantile spasm. The nurse came in for & administered Evelyn's morning meds, and we sent her back for some Ativan (Evelyn's 1st line emergency drug), as her seizure wasn't winding itself down with the prescribed time.
Shortly afterward the nurse arrived back with the Ativan, Evelyn began stiffening, arching, and crying - a complete return to the "pain episodes" we hadn't seen since early Friday. The Ativan administered, Evs drifted to sleep, where she's been since.
This brings us to the present.
While this could have blown a hole in our theory that reflux was the root of the problem, our hope is that the meds on Evs' empty stomach - along with increased abdominal pressure due to the seizure - caused another reflux episode, which kicked off her pain response.
Thus, we're continuing the "no-food" until the morning, at which point we're hoping we'll have seen little (or really - "no") pain episodes. We'll then try a regular (though probably somewhat slower) feeding with Evs, and "see what happens". If the pain returns, then we've got a pretty good line on what to treat. If not... well... it's hard to say.
At any rate - as you might imagine, we're just about "done" with being cooped up in Suite 118 of the Scottish Ritz, but are otherwise doing alright. Kim & I are trading-off nights at home, and Evs - while obviously not in her highest or best of spirits - is doing alright.
At any rate... that's the latest!
Sunday, March 15, 2009
Wednesday, January 7, 2009
Well this is WAY overdue!
Hello friends, family, countrymen,
We have been terribly remiss in updating this blog, and for that we are truly sorry. All is well, and I'll provide a fairly good update below. As a family, things are great. Daniel is traveling to Sweden for business for a couple weeks each month, Kim is enjoying cooking, reading and playing with Evelyn, and Evelyn is enjoying all her various playtimes and therapies. Rocky is enjoying licking the dishes while the dishwasher gets loaded. Here's the Evelyn lowdown:
September:
Evs had a good month; therapies were in full swing, the weather was beautiful, and Evelyn seemed to be moving to a new level - of alertness, learning, progress - altogether just a good, fun month.
October:
More fun and learning. Evelyn absolutely LOVES aquatic therapy, and socializing at CVI during her mom and me music group. She started eating more and more by mouth, and made an absolutely adorable Bumblebee for Halloween. Evelyn also attended the annual Scottish Highland Games at Stone Mountain with mom, dad, and OJ the Great (aka - greatgrandmother Jean Forester). She really enjoyed displaying her Forester pride, watching the log throwers, and listening to all the bagpipe music.
November:
Sweet Evelyn got a bad cold, which went into her eyes, and then her sinuses, and ears. Lather, rinse, repeat. Basically when it hit her eyes she got some clogged oil glands which then became irritated and required surgery (in December) to clear up. Even with antibiotics those darned eyes were harboring the infection, so November was not a happy month for miss Evs. She absolutely had lots of good moments - therapies, Gymboree, Music class, a visit from Grandpa Mike, Thanksgiving... but the sinus infection and eye infection lingered for most of the month.
December:
Hooray for the right antibiotic! (Did I mention we went through two that she was allergic to? It is simultaneously amusing and worrying to watch your child turn red in a matter of hours.) At any rate, Evelyn had surgery to clean up her eyes, and got a good shot of Penicillin for the sinus infection. By Christmas she was back on track.
Just before Christmas Grandpa Mike visited again and he and Daniel built a track and support system for a special suit. This suit (like a super-strong onesie with straps coming up from the shoulders) allows Evelyn to be in an upright position while having the track and supports hold most of her weight for her. "CC" and I designed the suit (based on a very expensive similar piece of equipment seen elsewhere) and CC sewed it together. This has been an awesome addition to our playroom - Evelyn can explore independently in a very natural position. In just a few short sessions in her little suit she has been reaching for toys, turning herself around to get to toys, and moving her feet (again to get the toys!). Our hope is that this suit will encourage not just independent play, but walking as well.
Here are a few skills Evelyn has started to display in the last few months:
1. Evelyn is eating a good 80% of her calories by mouth. Drinking is progressing more slowly, but she does do some drinking at all meals and is doing well using an open cup.
2. Evelyn is learning to approximate the sound 'Ah' - she will easily imitate the mouth shape, and has recently started to 'squeeze out the sound'. It's tough for her to get the actual sound out, but it is so cute to see her twist, open her mouth wide, and vocalize - and then of course smile at her mommy or daddy with pride.
3. Evelyn is starting to make choices using switches and her vision. She will either push a button or look at a preferred item to choose what activity, song, food, etc she wants. This is a very new skill, but she's shown a lot of promise doing the same thing with computer games, so we expect that transferring it to daily life should be successful.
4. Evelyn is bearing weight! She received a new stander in October, and while in or out of it she is willing, able and enjoys supporting her own weight. Coordinating her head, neck, torso AND legs all at the same time is a challenge, so she still gets assistance in staying upright - but she LOVES it.
I have to say, and I think Daniel would agree, that we love Evelyn more every day. She is such an amazing little lady, and we are really enjoying getting to know her. It is so neat to watch her grow up - her opinions, preferences, moods and personality are all emerging so clearly, and it is fascinating to watch her learn something new, or respond to something with obvious comprehension.
Well, that's about it for now. There are lots of new pictures available at http://picasaweb.google.com/dforester
Thank you, as always, for your continued interest and support.
We love you guys!
We have been terribly remiss in updating this blog, and for that we are truly sorry. All is well, and I'll provide a fairly good update below. As a family, things are great. Daniel is traveling to Sweden for business for a couple weeks each month, Kim is enjoying cooking, reading and playing with Evelyn, and Evelyn is enjoying all her various playtimes and therapies. Rocky is enjoying licking the dishes while the dishwasher gets loaded. Here's the Evelyn lowdown:
September:
Evs had a good month; therapies were in full swing, the weather was beautiful, and Evelyn seemed to be moving to a new level - of alertness, learning, progress - altogether just a good, fun month.
October:
More fun and learning. Evelyn absolutely LOVES aquatic therapy, and socializing at CVI during her mom and me music group. She started eating more and more by mouth, and made an absolutely adorable Bumblebee for Halloween. Evelyn also attended the annual Scottish Highland Games at Stone Mountain with mom, dad, and OJ the Great (aka - greatgrandmother Jean Forester). She really enjoyed displaying her Forester pride, watching the log throwers, and listening to all the bagpipe music.
November:
Sweet Evelyn got a bad cold, which went into her eyes, and then her sinuses, and ears. Lather, rinse, repeat. Basically when it hit her eyes she got some clogged oil glands which then became irritated and required surgery (in December) to clear up. Even with antibiotics those darned eyes were harboring the infection, so November was not a happy month for miss Evs. She absolutely had lots of good moments - therapies, Gymboree, Music class, a visit from Grandpa Mike, Thanksgiving... but the sinus infection and eye infection lingered for most of the month.
December:
Hooray for the right antibiotic! (Did I mention we went through two that she was allergic to? It is simultaneously amusing and worrying to watch your child turn red in a matter of hours.) At any rate, Evelyn had surgery to clean up her eyes, and got a good shot of Penicillin for the sinus infection. By Christmas she was back on track.
Just before Christmas Grandpa Mike visited again and he and Daniel built a track and support system for a special suit. This suit (like a super-strong onesie with straps coming up from the shoulders) allows Evelyn to be in an upright position while having the track and supports hold most of her weight for her. "CC" and I designed the suit (based on a very expensive similar piece of equipment seen elsewhere) and CC sewed it together. This has been an awesome addition to our playroom - Evelyn can explore independently in a very natural position. In just a few short sessions in her little suit she has been reaching for toys, turning herself around to get to toys, and moving her feet (again to get the toys!). Our hope is that this suit will encourage not just independent play, but walking as well.
Here are a few skills Evelyn has started to display in the last few months:
1. Evelyn is eating a good 80% of her calories by mouth. Drinking is progressing more slowly, but she does do some drinking at all meals and is doing well using an open cup.
2. Evelyn is learning to approximate the sound 'Ah' - she will easily imitate the mouth shape, and has recently started to 'squeeze out the sound'. It's tough for her to get the actual sound out, but it is so cute to see her twist, open her mouth wide, and vocalize - and then of course smile at her mommy or daddy with pride.
3. Evelyn is starting to make choices using switches and her vision. She will either push a button or look at a preferred item to choose what activity, song, food, etc she wants. This is a very new skill, but she's shown a lot of promise doing the same thing with computer games, so we expect that transferring it to daily life should be successful.
4. Evelyn is bearing weight! She received a new stander in October, and while in or out of it she is willing, able and enjoys supporting her own weight. Coordinating her head, neck, torso AND legs all at the same time is a challenge, so she still gets assistance in staying upright - but she LOVES it.
I have to say, and I think Daniel would agree, that we love Evelyn more every day. She is such an amazing little lady, and we are really enjoying getting to know her. It is so neat to watch her grow up - her opinions, preferences, moods and personality are all emerging so clearly, and it is fascinating to watch her learn something new, or respond to something with obvious comprehension.
Well, that's about it for now. There are lots of new pictures available at http://picasaweb.google.com/dforester
Thank you, as always, for your continued interest and support.
We love you guys!
Tuesday, September 16, 2008
some Evelyn news :)
Hello! I just wanted to share a few things we've enjoyed with Evelyn lately:
Happy
She is such a happy girl - she's been smiling again for a few months now and it's so nice to see what she enjoys.
Weight-Bearing
She's bearing weight! We just started using her stander, as well as just standing with mommy or daddy (we hold her under her arms and will use our knees to support her hips if needed. I'm so excited about this - Evelyn doesn't even have full head control, cannot sit unsupported, but seems to really enjoy standing up. She'll bear all of her own weight - I can even put her arms on my shoulders and she'll just stand there. It's so cute, because she's knows what a big girl she is and is SO proud of herself. She's wearing her AFOs so her ankles and knees are safe.. it's just so neat to me how much she enjoys it.
Cheetos!
She's eating Cheetos! Okay, they're baby snacks, and it's approved by her dietitian for the Keto diet, but she really loves to crunch them. Her oral movements and chewing skills are really improving with this. We're a long ways away from eating hamburgers, but she's really enjoying food. She's also eating yogurt, tofu, pudding, and we've been spicing up her foods - which has made a huge difference.
General
Like any child, she has her ups and downs - including a new affinity for crying at bedtime (I thought we got through this!) and refusing to eat/swallow things that aren't yummy to her (like meat - which is a big part of her diet). I also can't figure out how to get her to hold her own head up... it's kind of hard to walk around without head control... she'll figure that out eventually I suppose. :P
Anyways, we've had a good few months, and are really enjoying year two with our little lady.
Saturday, August 16, 2008
doctor week
Well, the past week or two somehow managed to be "doctor week" - Evelyn had a variety of appointments, all of a "routine nature" - all were monitoring-type appointments we've been working on for some time - they just managed to coincide in the same chunk of time. ;-)
24-hour EEG - Neurology
On 4-Aug, we went into CHOA-Scottish Rite for a 24-hour EEG. Thought it sounds "pretty scary", it's a pretty "normal" check - essentially exactly what it sounds like - wiring Evs up on an EEG and video for continuous monitoring over a full day. It'd been a while since we really had any good captures of seizures on EEG, so that was the main impetus for the test.
Though we got there around 8am, Evelyn wasn't really wired up until at least noon. Other than having a bundle of wires glued to her head and being confined to a hospital room, it was really a pretty normal/unobtrusive day for her (as normal as any day spent in a hospital can be). Evelyn flirted with the nurses & doctors; she & Kim played, read stories; etc.
My folks graciously came by after their work-days to watch Evelyn while Kim & I ran to get some dinner. I stayed with Evelyn that night (where she let me know that as fun as the hospital had been that day, staying in it overnight was not, in fact, acceptable ;-) ...), and Kim came early the next morning, remaining there until noon the next day.
The overall results were largely "as expected" - we got some confirmation that a lot of Evelyn's little "jerks" during the day are, in fact, small or partial seizures (over and above her "obvious" seizures). While that was something of a downer, we finally resolved that we thought she was doing really well before the EEG, and a simple EEG certainly didn't change how well she was doing - so on we go. :-)
Coming out of this, we did decide with Evelyn's neurologist to try a new medication; specifically, one to cover a broader "spectrum" of seizure types, as were seen on the EEG. We will start Evelyn on Lamictal in the near-future, as soon as a Ketogenic Diet-friendly and small enough dose can be determined and agreed-upon between her neurologist & dietitian. See, Lamictal's smallest tablet is 25mg, which is too high of a dose for Evelyn to begin on (Lamictal, as with many anticonvulsants, have to be ramped up very slowly). There is a 5mg "chewable" version, but it contains some level of sugar (contraindicated with the Ketogenic Diet). A complicated lady... ;-)
Consult - Endocrinology
Because a big part of Aicardi Syndrome is a "mid-line" issue in the brain - that is, the agenesis of the corpus callosum - endocrine-system issues are not uncommon. So, we had a first appointment set up with one Tuesday 12-Aug. Kim was very happy with Evelyn's new -ologist, and he ordered a few labs, but was not overly concerned with anything at present.
However... Evelyn didn't really feel like donating any blood to the cause. We did attempt to get some blood during the sedation for the MRI (below); however, she still just didn't really want to share. ;-) So, we'll be going in for another stick another day.
MRI - Otolaryngology & Neurosurgery
This past Wednesday, 13-Aug, we had an MRI scheduled for Evelyn. It took some late-game finagling, but we finally managed to get two different doctor's practices to get their results from a single test(!!!).
Evelyn's Otolaryngologist (a.k.a. ENT :-) ...) wanted a face & throat MRI to get a look at a small piece of tissue in the back of her throat. It's just a "watch item"; nothing of really any big concern, but he did want to get a "proper" look at it.
Evelyn's Neurosurgeon wanted a CAT scan of her brain, just for her semi-annual check-up on her fluid & cysts. He decided to order the CAT scan, as though an MRI produces a better image of soft-tissues, takes longer than a CAT scan, and thus requires sedation, especially for a longer MRI. Moreover, since this is just "fluid monitoring" - the rougher image of a CAT scan would be fine.
This, however, this left us in the situation of having Evs to be both sedated for an MRI and then blasted with radiation for the CAT scan. In the same day. Through a bit of fancy phone-work and sweet-talking (hint: talk to the nurses, not the office staff), we finally managed to get a single MRI to cover both doctors. So, we went in early Wednesday morning to begin that. Regrettably, since it requires sedation, it easily triples or quadruples the amount of time otherwise required for the MRI.
At any rate, the MRI (and sedation) went off largely without a hitch, and results from both the Otolaryngologist and Neurosurgeon were positive - no cause for concern for the piece of tissue in her throat, and no change in her ventricle size & cysts. Thus, we'll now move to annual checks on her noggin (yay!) - via CAT scan. ;-) As noted above, we tried a blood-draw for Endocrinology, since an IV had to be placed anyway for the sedation, but Evelyn lived up to her reputation as a "hard stick" and being stingy with her blood. ;-)
In general
Anyway.... other than "lotsa doctors", we've all been doing pretty well. Evelyn has, as usual, trooped through all of this, probably with more of a "spring in her step" than Kim & I. :-)
24-hour EEG - Neurology
On 4-Aug, we went into CHOA-Scottish Rite for a 24-hour EEG. Thought it sounds "pretty scary", it's a pretty "normal" check - essentially exactly what it sounds like - wiring Evs up on an EEG and video for continuous monitoring over a full day. It'd been a while since we really had any good captures of seizures on EEG, so that was the main impetus for the test.
Though we got there around 8am, Evelyn wasn't really wired up until at least noon. Other than having a bundle of wires glued to her head and being confined to a hospital room, it was really a pretty normal/unobtrusive day for her (as normal as any day spent in a hospital can be). Evelyn flirted with the nurses & doctors; she & Kim played, read stories; etc.
My folks graciously came by after their work-days to watch Evelyn while Kim & I ran to get some dinner. I stayed with Evelyn that night (where she let me know that as fun as the hospital had been that day, staying in it overnight was not, in fact, acceptable ;-) ...), and Kim came early the next morning, remaining there until noon the next day.
The overall results were largely "as expected" - we got some confirmation that a lot of Evelyn's little "jerks" during the day are, in fact, small or partial seizures (over and above her "obvious" seizures). While that was something of a downer, we finally resolved that we thought she was doing really well before the EEG, and a simple EEG certainly didn't change how well she was doing - so on we go. :-)
Coming out of this, we did decide with Evelyn's neurologist to try a new medication; specifically, one to cover a broader "spectrum" of seizure types, as were seen on the EEG. We will start Evelyn on Lamictal in the near-future, as soon as a Ketogenic Diet-friendly and small enough dose can be determined and agreed-upon between her neurologist & dietitian. See, Lamictal's smallest tablet is 25mg, which is too high of a dose for Evelyn to begin on (Lamictal, as with many anticonvulsants, have to be ramped up very slowly). There is a 5mg "chewable" version, but it contains some level of sugar (contraindicated with the Ketogenic Diet). A complicated lady... ;-)
Consult - Endocrinology
Because a big part of Aicardi Syndrome is a "mid-line" issue in the brain - that is, the agenesis of the corpus callosum - endocrine-system issues are not uncommon. So, we had a first appointment set up with one Tuesday 12-Aug. Kim was very happy with Evelyn's new -ologist, and he ordered a few labs, but was not overly concerned with anything at present.
However... Evelyn didn't really feel like donating any blood to the cause. We did attempt to get some blood during the sedation for the MRI (below); however, she still just didn't really want to share. ;-) So, we'll be going in for another stick another day.
MRI - Otolaryngology & Neurosurgery
This past Wednesday, 13-Aug, we had an MRI scheduled for Evelyn. It took some late-game finagling, but we finally managed to get two different doctor's practices to get their results from a single test(!!!).
Evelyn's Otolaryngologist (a.k.a. ENT :-) ...) wanted a face & throat MRI to get a look at a small piece of tissue in the back of her throat. It's just a "watch item"; nothing of really any big concern, but he did want to get a "proper" look at it.
Evelyn's Neurosurgeon wanted a CAT scan of her brain, just for her semi-annual check-up on her fluid & cysts. He decided to order the CAT scan, as though an MRI produces a better image of soft-tissues, takes longer than a CAT scan, and thus requires sedation, especially for a longer MRI. Moreover, since this is just "fluid monitoring" - the rougher image of a CAT scan would be fine.
This, however, this left us in the situation of having Evs to be both sedated for an MRI and then blasted with radiation for the CAT scan. In the same day. Through a bit of fancy phone-work and sweet-talking (hint: talk to the nurses, not the office staff), we finally managed to get a single MRI to cover both doctors. So, we went in early Wednesday morning to begin that. Regrettably, since it requires sedation, it easily triples or quadruples the amount of time otherwise required for the MRI.
At any rate, the MRI (and sedation) went off largely without a hitch, and results from both the Otolaryngologist and Neurosurgeon were positive - no cause for concern for the piece of tissue in her throat, and no change in her ventricle size & cysts. Thus, we'll now move to annual checks on her noggin (yay!) - via CAT scan. ;-) As noted above, we tried a blood-draw for Endocrinology, since an IV had to be placed anyway for the sedation, but Evelyn lived up to her reputation as a "hard stick" and being stingy with her blood. ;-)
In general
Anyway.... other than "lotsa doctors", we've all been doing pretty well. Evelyn has, as usual, trooped through all of this, probably with more of a "spring in her step" than Kim & I. :-)
Monday, July 21, 2008
a year already!?!?
If I was a bit more "on" this blog, I would've had a whole series of posts with the same title, starting from about mid-March. I actually started drafting several, way-back, but just didn't get around to polishing them off. So I'll keep this one brief and "un-polished", to not let it fall into the usual trap of my over-engineering. ;-)
At any rate, I was on the bus home, and was chatting with one of my "bus buddies". I'd told him a little bit about Evelyn before; that "she has a seizure disorder"; so on and so forth. At one point, the conversation turned to "How's the family", and he asked a little bit more about Evelyn, including when her seizures started.
Then I stopped and realized - a year ago today, we were about half-way through our 11- or 12-day hospital stay, inaugurating us into the grand and exciting world of seizure management. Evelyn's seizures started in earnest in maybe early July 2007, but by mid- to later-July, they were continuing to get worse, and we began our stay at PCH.
It's all still a bit surreal, really - "Have we really only been dealing with this stuff for a year?" I guess precise measuring and grinding pills and discussing doses and logging seizures and considering the omnipresent "next step" has become a legitimate part of "normal life".
Heh. Strange; the memory of not doing that seems so long ago, yet a year seems way too short.
Now, as-promised, such as to not keep this post in "Draft" limbo while I over-engineer it - I'm just going to post it; un-refined thoughts and all. ;-)
At any rate, I was on the bus home, and was chatting with one of my "bus buddies". I'd told him a little bit about Evelyn before; that "she has a seizure disorder"; so on and so forth. At one point, the conversation turned to "How's the family", and he asked a little bit more about Evelyn, including when her seizures started.
Then I stopped and realized - a year ago today, we were about half-way through our 11- or 12-day hospital stay, inaugurating us into the grand and exciting world of seizure management. Evelyn's seizures started in earnest in maybe early July 2007, but by mid- to later-July, they were continuing to get worse, and we began our stay at PCH.
It's all still a bit surreal, really - "Have we really only been dealing with this stuff for a year?" I guess precise measuring and grinding pills and discussing doses and logging seizures and considering the omnipresent "next step" has become a legitimate part of "normal life".
Heh. Strange; the memory of not doing that seems so long ago, yet a year seems way too short.
Now, as-promised, such as to not keep this post in "Draft" limbo while I over-engineer it - I'm just going to post it; un-refined thoughts and all. ;-)
Friday, May 9, 2008
evs at therapy!
Well, Evelyn had a bit of a rough start to her birthday - less than an hour before her birthday-day (11:20pm on May 8), she had a "Diastat seizure" (a seizure that didn't stop within pre-defined bounds of time / postures; thus a special "stop-the-seizure-NOW" medication was needed). These aren't a huge deal in the scheme of things, but they also aren't generally too common for her, so it's always a little bit of a downer when we have one. :-(
But, as we always find the silver lining around here - Due largely to the Diastat (it's a form of Valium), Evelyn slept like a champ last night (which means we all slept well!) - no seizures overnight, etc. So, she woke up presumably feeling refreshed for her birthday (as did we all!). And maybe that's why she did so well at therapy...
Yes, just because it was her birthday today didn't mean she was off the hook for Physical Therapy. Happily, I took the day off work, to help get ready for her party tomorrow, so I was here for this therapy session, as was Evelyn's Grandpa Mike (Kim's dad), in-town for the big weekend.
Evelyn was a little reticent to participate, at first (as is typical). But after some of her usual exercises, her therapist (who we adore) decided to try something new today - putting Evelyn in a seated position. Now, Evelyn's head control and trunk control aren't so great - she's never "sat" on her own - let alone pulled herself into a seated position - and when she is in such a position, it's always with us holding/supporting a big part of her weight, and being ready to catch her head when it falls.
So as you'll see below - this is big stuff for her!! HUGE!! Her therapist started her off in a "seated-crunched-over" position (with her trunk brace on) - Evelyn was then weight-bearing on her arms, having to support her head "bent over", and even pushing herself up with her arms, trunk & neck muscles!! Needless to say, we are SO HAPPY and SO PROUD, especially on her birthday! :-)
(1-3 min each. Apologies on the sloppy camera work; the best I could do on short notice when it was happening was get the web-cam up, and it's consequently a bit wobbly)
Part 1:
Part 2:
Part 3:
Part 4:
But, as we always find the silver lining around here - Due largely to the Diastat (it's a form of Valium), Evelyn slept like a champ last night (which means we all slept well!) - no seizures overnight, etc. So, she woke up presumably feeling refreshed for her birthday (as did we all!). And maybe that's why she did so well at therapy...
Yes, just because it was her birthday today didn't mean she was off the hook for Physical Therapy. Happily, I took the day off work, to help get ready for her party tomorrow, so I was here for this therapy session, as was Evelyn's Grandpa Mike (Kim's dad), in-town for the big weekend.
Evelyn was a little reticent to participate, at first (as is typical). But after some of her usual exercises, her therapist (who we adore) decided to try something new today - putting Evelyn in a seated position. Now, Evelyn's head control and trunk control aren't so great - she's never "sat" on her own - let alone pulled herself into a seated position - and when she is in such a position, it's always with us holding/supporting a big part of her weight, and being ready to catch her head when it falls.
So as you'll see below - this is big stuff for her!! HUGE!! Her therapist started her off in a "seated-crunched-over" position (with her trunk brace on) - Evelyn was then weight-bearing on her arms, having to support her head "bent over", and even pushing herself up with her arms, trunk & neck muscles!! Needless to say, we are SO HAPPY and SO PROUD, especially on her birthday! :-)
(1-3 min each. Apologies on the sloppy camera work; the best I could do on short notice when it was happening was get the web-cam up, and it's consequently a bit wobbly)
Part 1:
Part 2:
Part 3:
Part 4:
Happy Birthday, Evs!
Well, it's been one year since Evelyn LeeAnn Forester entered the world - and what a year it has been! In so many ways the time has flown by; we've made it through one big diagnosis, two surgeries, a move across the country, two-point-five teeth, countless seizures, countless diapers, countless sleepless nights, and countless moments of pure joy.
Evelyn has navigated her first year of life with such strength and grace that we cannot wait to see what the next year brings. She is such a happy little chubby baby. She cracks us up on a regular basis, is a very curious and dramatic girl, and such a hard worker! There were times in the first few weeks and months, before we really got to know her, that we wondered what Evelyn would achieve, and even if she would be happy. Well, she's certainly shown us to be foolish in worrying -- even before she could smile she showed us how happy she was every day. She learns or does something new so often that it's getting hard to keep track, and she has opinions about EVERYTHING, and isn't afraid to let us know how she really feels. :)
Parents always say that having children changes your life, and it doesn't really sink in until you have your own - but they're right. While it has been hard and even seemingly impossible at times, it has been wonderful to experience this first year of parenthood. Having Evelyn join our family has been an amazing blessing; we are better people as a result of the love, happiness and perspective she has brought into our lives. Happy Birthday, Evelyn!! :-)
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