[In response to a question about how I was doing and how work was going]
I really need to sit down and type up a long update about Laurel, she's been through a couple of different evaluations in the last several weeks. I just haven't had time because we *have* been traveling so much with the evaluations and because of getting ready for all the big November events - it's going to be an action-packed month! Today we went on a llama hike, which was a blast (but it meant finding and cleaning for a babysitter), and next up is the arrival of Bob's parents next Saturday! But, about my boss...I think I might be starting to make a little headway on that front. We're getting a new project in and he said to me, "This might be what kicks you up to full-time, if you're in a position to do that." I'm not (and said so and I think he was OK with that), but at least that doesn't seem like the kind of thing you'd say to someone you're planning to fire imminently. I have been trying to use as much as my extra 10 hrs a week as I can to work on his pet project and I think it's paying off.
Well, we are now in the market for another babysitter. No, our babysitter didn't do anything really horrible - actually, after a couple of weeks of seeming really frazzled after the two babies started there, things seem to have fallen back into a routine. But she's moving out of the county, and even though it's JUST over the county line (like within a few hundred feet), our county's buses can't drop Laurel off there. We talked about having her meet the bus just over the line, but there has to be an address there and there isn't. We looked into having an outside transportation service take her there, but our county's paratransit doesn't go into that county and that county's service only runs into our county a couple of times a day. So, the only thing for it would be for us to go pick Laurel up at the school and take her out there. For me, that would be almost an hour and a half out of my day ("out there" isn't that much farther from our house than the babysitter is now, but it's a half hour just to our house and this is in the wrong direction from town). It's a little less for Bob but still not something that either of us feels would be sustainable over the long term.
I feel sad, even though I *have* felt that Laurel could receive more attention elsewhere, because I know that our babysitter genuinely cares for Laurel and I have appreciated her level-headedness and reliability. And now we have a task ahead of us. Just what I needed, on top of getting ready for Laurel's birthday, getting ready for Bob's parents (who are coming on Saturday for a week), trying to get Laurel's new NACD program going, getting her vision therapy implemented, getting ready for a public meeting, getting ready for a model demo that I'm still missing lots of data for, launching yet a third project at work, trying to help get BRIGHT (Brain Injury Group - Hope through Treatment) off for its big debut, and infertility testing.
I guess I don't know what to do aside from running an ad in the paper. I've been trying to think about wording - something like:
Part-time caregiver needed for sweet 3-year-old girl with cerebral palsy and developmental delays. She attends morning preschool; hours care is needed are approximately 1-6 M-F. Additional hours occasional mornings and evenings are possible but not required. Your home or ours, but if yours must be in [county name] north of [city name] for school bus drop-off [actually, the school bus will drop her off anywhere in the county, we just don't want her to have a long bus ride, or us to have a long drive to pick her up]. She is fed by tube and has limited mobility but is medically stable and has good receptive language skills. Special-needs experience not required, but experience with children and the ability to lift (currently about 30 lbs) are. Pay to $9/hour [about what our babysitter is currently making off us - sweet deal considering how many other kids she's watching] commensurate with experience and whether other children are also being watched. Be a special part of a special girl's life!
What do you think? I want to do this right! I'm really a nervous
wreck about the whole thing, I have tons of stuff to do at work today
but have hardly been able to think about anything else. 
This may end up being better for Laurel in the long run but it probably
won't be easy to get there - assuming we do at all!
Well, we have had a great response to our ad for child care! We've
received 7 calls so far and scheduled 5 interviews with some really
terrific-sounding, experienced women. The interviews start tonight!
I stopped by Children, Youth and Family Services because I remembered
that they had some helpful literature on questions to ask prospective
providers but the literature was in a closed office where the child care
specialist was working with a client. I waited half an hour but
eventually had to get to work. Does anybody have or know where I can
find a good list? Or just have some suggested questions for me? I've
tried looking around some on the Web, but most of the lists I'm finding
are for day care centers and the questions aren't really appropriate.
Also, any thoughts on what the going rate is for this kind of care? (I
did take the reference to price out of the ad as Jen suggested.) The one
person I talked to about price (who was extremely experienced) said that
she was used to getting $10 an hour (working for child care centers) but
would work for less if we did it "under the table."
Thanks for your help...I'm feeling a little better since it does seem like we have some great prospects but still very, very nervous...
Happy 3rd birthday to our amazing Laurel!
I remember how rough her first birthday was for me, but things have
gotten so much better! When she turned 1, it was depressing to shop for
toys for her because it was hard to find things we even thought she'd
respond to. It's still challenging because of her limited ability to
move, but now we know there are toys that she'll love, we just have to
find them! (In fact, I found entirely too many this year. 
)
We are having a little party for her at school this morning with cupcakes (she'll eat the frosting) and party hats and then a quiet party at home with Grandma and Grandpa Garwood this evening.
I want to say thanks, too, to all of you wonderful folks who have offered us so much support these past three years.
OK, I have to go get ready for the party now!
Quick update on our ad response - we're now up to 16 calls and 7
interviews! (I'm getting pretty picky.
)
Very tired and stressed and in need of a vent...
I just feel like I'm going and going lately. Last week I worked like
a dog every day getting the word out for my public meeting (which is
next Monday) and then every night cleaning for my ILs. This week during
the day I'm knocking myself out getting the presentation ready for the
meeting and getting my data ready for a visit from the guy who developed
this model I'm supposed to run, only I didn't find out about this visit
until late last week and I am not even *close* to ready to talk to this
guy.
Then coming home every night and dealing with the phone calls (up to 23
now) and interviews (8 not counting the person who blew us off last
night 
). Bob is being no help at all with any of this - last night when we
were waiting for the person who didn't show up (the only interview I'd
scheduled for last night since I did of course want us to have time to
celebrate Laurel's birthday!), I said to him, "Let's talk about
what questions to ask so we can be more organized than we were last
night" (the person who came Monday night showed up before I even
got home [45 minutes earlier than I had scheduled her] and came in
before I'd had a chance to get my brain at all organized). And he said,
"It doesn't matter, you'll ask all the questions and it will be
fine." 
Also, yesterday we had our follow-up with the reproductive endocrinologist. He told us that Bob's overall sperm count and morphology were just fine but that the number of "good swimmers" was just barely normal, and that we would be good candidates for IUI. Also, he thinks that the polyp/fibroid that was found when I had a hysterosalpingogram a couple of weeks ago (a test where they inject dye through the cervix and take x-rays to see how the dye moves through the uterus and tubes - the same test Nancy was asking about) should probably be removed. It doesn't sound like a major procedure (they do it by running a little scope and instruments up through the cervix) but anything that involves unconsciousness makes me nervous! It also turns out, when I did the math of when this doc does surgery (Thursdays) vs. when in my cycle they want to do it, it would be Thanksgiving so that obviously won't work and I'll have to call and see what else can be arranged.
Oh, and to top everything else off I've hardly made a dent in Laurel's program (Bob isn't too much help there, either). I sent our contact at NACD an e-mail this morning and (along with some questions that I had for her) explained the situation, especially about the babysitter, and that although short term we're not getting much done, in the long run I think Laurel will get much more individual attention and more program done. (And frankly, it will be a relief to have the babysitter be able to take on some of those responsibilities - there are several parts of the program she doesn't like that much [if it were up to Laurel she wouldn't do much in the way of physical therapy] and sometimes I feel like all I do is come home and make her cry.)
Anyway, I have so much work to do I'm expecting I'll probably work this weekend, in between the three interviews we have scheduled. Then I have three evening meetings next week. This is one of those times that I KNOW will pass and I'll be able to breathe again but right now that is looking way too far off.
Thanks for listening to me vent, leftover cupcakes to anyone who got
this far! ...Speaking of which, Laurel was SOUND asleep when we got to
school yesterday (she usually takes a power nap or two during school but
she was OUT). Fortunately she did wake up after about 20 minutes and we
were able to have the party, which went very well! The party at home
didn't go so well as she seemed to be having gas pains or something. She
did enjoy learning how to take bows off of packages though.
OK, back to the marathon...
Rochelle 
Oh, and this morning I snapped at Bob, who nagged me about yet
another thing that needs to get done before Thanksgiving. We have 30
days from the day we bought the van to get rid of our '91 Ford Escort
before we have to pay extra insurance for it and we want to donate it to
charity. I want to donate it to BRIGHT, which just received its 501(c)3,
but the president of BRIGHT needs to sign the group up with a
car-donation service. So Bob nagged me to nag him. I understand where he
was coming from, actually, but when I sounded reluctant (a. I hate
nagging b. one more freakin' thing!) he said, "Do you understand
why the car has to be gone by Thanksgiving?" in this patronizing
tone and I just lost it on him. 
Must stop spinning wheels and work...
Help me figure this out!
Both of the babysitting applicants we interviewed last night were really outstanding. We still have four interviews to go, but I'm trying to rank-order them as we go along so we can make a quick decision after the last interview, and so if #1 doesn't accept our offer we don't scramble to figure out who #2 was. The two from last night are our top two so far but I'm having a tough time figuring out which one I like better!
Candidate #1 is a pediatric occupational therapist (!) with years of experience with kids with cerebral palsy (as a therapist, though, not as a caregiver). She has recently moved to the area and is looking for a part-time job because she is also starting some kind of holistic practice with a partner who does homeopathy. She can watch Laurel at her house, which is maybe 10 minutes from ours and from the school (to us this is a plus - it would be nice to have the house to ourselves on days we work at home or are sick). She has a lot of training in feeding therapy and sensory integration. Minuses: She hasn't thought about how much she wants to get paid and we're afraid that when she does, it'll turn out we can't afford her. We're worried that if her other business takes off, she won't stick around long. She seems like she has strong opinions about what should and shouldn't be done therapy-wise and I have a feeling we may clash on what should be done with Laurel. And the honest truth is, we just didn't "click" with her quite as well as the second one. But of course, it's hard not to say, WOW! FIVE HOURS WITH AN OT EVERY DAY!
Candidate #2 has years of experience with child care, working for centers, in her own home, and as a nanny. She would need to take care of Laurel at our house, because she lives too far away. She doesn't know anything about CP kids but is very willing and interested in learning. I think we would have little problem with her doing anything we asked her to with Laurel. She seems like she has a great attitude and more enthusiasm than the first one. We know that we can afford her BUT she prefers to be paid under the table, which we're not totally thrilled about. I do think that if we hired her, she'd stick around.
Both candidates don't smoke, have CPR/first aid training, are available occasional mornings, evenings, and even entire weekends (WOO-HOO!), and have tons of references.
What do you guys think?? 
[In response to a question about how the babysitter search was going and the public meeting went]
The Great Babysitter Search is over! The final tally was 26 calls and
6 interviews (we had 3 cancellations and 2 no-shows). The two people I
was dithering over earlier actually wound up being #3 and #4 on our list
(with the OT being #4 - and she was the one who wanted to know WHY when
Bob called her to tell her she didn't get the job. I just knew she
would...). The person we hired has worked with 2-2.5 year-olds for the
last year and a half at a local daycare/preschool, and has also been a
nanny and done daycare for disabled adults. She is SO enthusiastic and
wanted to know if it would be OK if she went over to Laurel's school to
learn what they do with her! She was also the person who did by far the
best job of calming Laurel down when we handed her to her (it's funny,
Laurel usually does fine with strangers but was fussy for all of the
interviews) - Laurel wound up taking a nap on her! We ended up having to
pay a dollar more an hour than the top of the range we were originally
thinking, but that turned out to be what most of the folks with
experience wanted. Of course, we *could* have paid $50/week and sent her
over to the house with the seven grandkids and grandpa
"Junior" who sits at home and smokes... 
Anyway, our new sitter is starting Dec. 8 (we're going to have to spend
a week schlepping Laurel over to her current babysitter's new house, b/c
the new sitter had to give two weeks' notice) and we're very excited
about her!
The meeting didn't go so well from a turnout standpoint (it was
almost all staff from other agencies, not much actual
"public") but my presentation went very well. I got the
biggest compliment I've ever gotten from my boss, who said that my
presentation was clear and well-organized and that obviously a lot of
preparation went into it. 
He also said at the last staff meeting (at which the natives were
restless, b/c someone had just been let go at the end of their six-month
probation period) that nobody there was in any danger of losing their
job, so I'm feeling a lot less like I'm about to be fired than I was.
I spent part of my weekend and the last couple of evenings working on a big huge Laurel update and website update, which I'll probably post this evening after Bob's had a chance to look it over. I feel like I'm finally catching up!
Time for a big, long overdue Laurel update - and a major website update, too!
In the last month and a half, we've been through a vision evaluation, another NACD evaluation, progress reports and a "team meeting" at school, and her 3-year check-up. I guess I'll go in order:
The vision eval was terrific, both informative and encouraging. The doctor, Chris Roman (a PhD, not an MD) did a number of different things with Laurel and asked us a lot of questions and we learned that on a scale of 0 to 10 (0 being no vision and 10 being perfect), Laurel is about a 4. She said that it's actually unusual for a child with cortical vision impairment to see her for the first time and score anything greater than 0 (no matter what their age), so that's a testimony to the work we've done already. She clearly thought that what we've been doing with NACD has done Laurel some good, but she had lots of other suggestions. For example, she observed (as we've noticed too) that Laurel looks at something and then looks away while she reaches for it with her hand. Basically, she can't process both a complicated visual item and using her hands, so she shuts down one while she does the other. So to get Laurel's eyes and hands to work together she says we need to keep it very simple visually and work with just one or two colors (preferably Laurel's favorites, red and yellow) and a black background. She also suggested using a bag filled with translucent things and water on a light box and having Laurel squish them around. She told us that she expected that Laurel would continue to improve (she told us lots of stories about kids who had recovered completely, even, but at this point I'm happy to go with "continue to improve") and said she'd love to see us back again. Laurel's teacher, therapists and pediatrician have all been very impressed with the report we got back - her ped has already sent two other kids up to Pittsburgh to see her!
We didn't get that much out of the NACD re-eval. The evaluator *was*
impressed with how much better Laurel is in the creeper than she used to
be. She holds her head and upper body up really beautifully in it now
and doesn't fuss much about it. She doesn't go anywhere either, though.
One of the things we were given this time around to help her with the
idea of moving by crawling is to get her to crawl down a gently-sloped
slide (the idea being if she just moves an arm or leg a bit, she moves),
but she's utterly terrified of it! We've decided to start with the slide
nearly flat (it's a slide that Bob made to NACD's specs and it's
adjustable for slope) just to get her used to being on it. Funny thing
is she's OK with sliding - I think it's the head-first thing that's
freaking her out. We're also supposed to be feeding her extra-thick
pudding to make her tongue work more, which we were trying to make with
rice milk because of her milk protein sensitivity but we've been totally
challenged by that (I saw on a website that it *was* possible, but at
this point I'm doubting it) and last night decided to make plain ol'
pudding just to prove we still could.
It's time to tape her program again but we're not very motivated - I
think partly because we really haven't been doing it much with
everything else that's been going on and partly because we're getting
burnt out on it - we only got about five new things this time and the
rest was pretty much same ol' same ol'.
School is mostly going great. The biggest problem they're having is
with her falling asleep (she always did take a nap in the morning), but
part of that is because she has really latched on to the idea that going
to sleep makes therapists go away! It worked with the early intervention
therapists, but the school therapists are learning that they just have
to keep at her. Hopefully when it doesn't work she'll eventually stop.
Her speech therapist has been pleased with her feeding progress - on a
good day now, she'll eat a 4-ounce jar of stage 2 baby food (in two
sittings) and the therapist has been working with her on some crunchy
things like pretzels and goldfish crackers. Laurel's mechanics have
improved enormously, but I wish she seemed happier about eating orally. 
Her PT says Laurel isn't half as bad as her previous PT had led her to expect! But her progress with gross motor skills is still very slow. Her goal for the school year is to get to a 6-month level and I'm worried she's not even going to make it that far. Her back strength and her ability to right herself have improved some. She wants to walk SO badly, though, and given the opportunity will take steps all the way across our family room (a big room, it's half the basement) while we support her.
Her OT also notes slow progress. Her arms have loosened up some more. She still needs a lot of assistance with grasping and moving her arms but likes to do things like stacking toys and simple puzzles with help. She does enough appropriate movement on her own that I think she "gets it," she just can't do it by herself. She has at least improved a lot in terms of her understanding that arms are useful for things and, for instance, can now set off her rocking musical elephant by pushing it as well as by kicking the tray underneath it. She still does best with electronic toys with buttons or knobby things to grab (BTW, I found that other toy I was looking for, in a consignment shop near my mom's house!) and can choose specific buttons or objects. As her ST puts it, "Given a quiet environment and little distraction, Laurel has been able to make choices between 3 objects by using a vocalization, reaching and eye gaze 70% of opportunities presented, when she is alert, calm and attending to the activity." With similar caveats she also says, "Laurel has been able to point consistently 80% of the time to pictures in large and small books."
I think the biggest success story so far at school is her interaction with the other kids. She loves them, and they love her! The teacher says they are always trying to show Laurel what to do and that she listens to them a lot better than she does to the adults. She usually makes a noise back now when they say hi, and we've been getting reports like "played independently with friends, smiling, reaching and trying to vocalize." The teacher has been using the other kids as a motivator for Laurel and is having good luck with things like getting Laurel to use a switch to say, "Play with me." I've been impressed with the teacher's ingenuity with the switch, actually - at the "Fall Celebration" party (they're not allowed to celebrate Halloween in the schools here) they did a play with the Three Little Pigs and Laurel was the Big Bad Wolf. Her switch was hooked up both to a a recording that said, "I'll huff and I'll puff and I'll blow your house down" and to a fan. I never would have thought of that! I really think the greatest thing about school is all the different ways they find to integrate Laurel into the class. It sounds like most days she's happy there and I think it's giving her experiences she just wasn't getting anywhere else.
Laurel's 3-year-old checkup was very upbeat. Her ped talked about how
much progress she has made in the last year and, when we told her how
hard Laurel is trying to walk, said she still though it was possible
that Laurel might.
Laurel was only 27.5 lbs, which is actually a bit less than we've had at
some of our other doctor visits, but the ped said that it's between the
10th and 25th percentiles which is where Laurel has always been, so she
wasn't worried. We came up with 35.5" on her height, but that's
only the 5th percentile and Laurel was so upset (because they'd tried to
stick her on one of those baby scales, which she's way too big for and
it scared her) that we think it was a bad measurement. One of these
evenings when she's relaxed on the floor we're going to see if we can
get a better measurement on her. We were disappointed at her head
circumference until the ped pointed out that she's followed a
normally-shaped (although low) growth curve - heads just aren't growing
that fast at this point. The important thing is not how big her head is
but how much progress she's made! We are still sometimes mindblown by
what she responds to. In Pittsburgh, for example, we had put her in a
new "Travel'n'Trundle" bed from Right Start (thanks for the
idea, Jen!) that she was having trouble getting used to and squirming
and fussing. The following conversation ensued at about 2 AM:
Bob: I'm going to have to bring her up to sleep in the bed with us.
Me: Don't do that, she needs to get used to her new bed!
Bob: Then I'm going to have to go sleep in the living room.
Dead silence from that point forward.
She is turning out to be more of a character every day. For instance, she has decided that she wants her oral feedings in green bowls (even though red and yellow are usually her favorite colors) and that she would rather fall asleep in the family room with the TV on than in her bedroom with lullabies playing. We are still frustrated with some of her quirks - for instance, her continued dislike of her stroller. As her teacher says, part of Laurel's problem is that so far the main way she has had to communicate is to cry, so she has to learn other ways. But as her ped says, she will!
Now, about that website update. It's hard to believe, but I had a
year's worth of pictures to put up! I split them into two pages - the
"2.5 years old" page is the one you get by clicking on the
"Latest Pictures of Laurel" link, and the first part of the
year is on the "Pictures of Laurel - 2 years old" page (link
near the bottom of the home page). I have also finally put up some of
the professional black-and-white pictures we had taken a couple of weeks
after Laurel got out of the hospital on the "First Month at
Home" page. I think I had kind of a mental block against them
because they were supposed to have been taken right after she was born,
but they're really nice pictures and they deserve to be posted. There's a little video clip too! It's
in Windows Media (.wmv) format and it's of Laurel doing the "Laurel
Dance" - she is really doing most of the movement herself, I'm just
bouncing my leg and supporting her. I've also switched to a different
GuestMap service because I was so tired of the ones I had getting
cleared off (I only have a U.S. map now, though, but folks who live
elsewhere should feel free to put their dots out in the blue
). Thanks for reading and CONGRATULATIONS if you made it this far!!