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!
Wednesday, January 7, 2009
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!! :-)
Thursday, April 10, 2008
orthopedist: good news!
A few days back, Evelyn had her first meeting with the orthopedist. This is something we'd had on back-burner, but wanting to do for some time. For a variety of reasons - both due to some genetic predisposition (including malformed vertebrae) and muscle tone issues - many children wtih Aicardi suffer from scoliosis.
This can be something seen roughly at the outset (e.g. from birth), or can develop over time. "First priority" with Aicardi is largely seizure management, followed perhaps by feeding issues, therapies.... so, having seen no immediate outward symptoms of scoliosis, we hadn't been to see an orthopedist yet. It has been one of those things that "we'd get to", but still kind of resting in the back of our mind, wondering - "Could Evs have any scoliosis?"
Happily, we are able to report a resounding "No". ;-) Of course, this something that we'll still need to watch over time - but as of now, Ev's spine is straight as an arrow. ;-)
This can be something seen roughly at the outset (e.g. from birth), or can develop over time. "First priority" with Aicardi is largely seizure management, followed perhaps by feeding issues, therapies.... so, having seen no immediate outward symptoms of scoliosis, we hadn't been to see an orthopedist yet. It has been one of those things that "we'd get to", but still kind of resting in the back of our mind, wondering - "Could Evs have any scoliosis?"
Happily, we are able to report a resounding "No". ;-) Of course, this something that we'll still need to watch over time - but as of now, Ev's spine is straight as an arrow. ;-)
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