[In response to a question about "fun summer plans"]
Well, it took some effort but I finally got Bob excited about the
idea of taking Laurel for conductive education/Feldenkrais in San
Francisco for three weeks in August and I think that's going to be a go.
It'll be a week earlier than we originally planned (now Aug 1 - 19)
because, as we found out a few days ago, the school board voted to start
school here a week earlier (Aug 22) next year. But Laurel has been
accepted, I just need to fill out the paperwork, make a video of her so
they can see her present level, and send the deposit (and then make
plane and car reservations...and hopefully hotel reservations somewhere
within a reasonable distance of Yosemite for one weekend, but I'm
worried about that). I'm definitely VERY excited.
Another thing that's not quite summer (since it's the weekend after
this) but that I'm excited about is that we're getting a respite
weekend! Well, at least part of one...we'll have to be back rather
earlier on Sunday than we'd hoped. Laurel's former preschool teacher is
doing it, and when we'd originally arranged with her for April 15-17,
what I didn't know was that she worked on Sunday but had arranged to
take the day off. We rescheduled after Laurel was doing so badly with
her casts the first week after the surgery (although as it turns out,
she really wasn't that bad by the 15th) and Amy couldn't take another
Sunday off. But anyway, we're going to go stay for Friday and Saturday
nights in Berkeley Springs, WV (someplace we've driven through many
times on our way to Pittsburgh and always thought would be cool to stay
at) and do some hiking and maybe some biking (the Western Maryland Rail
Trail isn't too far away) or some spa-ing (Berkeley Springs has natural
hot springs and a long history as a spa town..."George Washington
hot-tubbed here" 
).
Finally, I've got a leave day I have to use up by the end of June, so
I'm thinking (haven't actually asked yet, but think it will probably be
OK) of asking our babysitter to stay late one night in early June so we
can go to King's Dominion! Bob and I both love roller coasters...last
year we stopped at Busch Gardens on our respite weekend in early April
but there was a cold snap and we darn near froze our patoots off. Roller
coasters really aren't that much fun when the wind chill is like, 20. 
So looking forward to riding coasters in the warm!
So those are our plans...most exciting we've had for a long time! Helps
to take my mind off the nasty IEP stuff. 
(Not a lot of progress on that front...former SLP hasn't called back, I
do have an appt with the one at the children's rehab center on May 16
[same day that Laurel has a bunch of other appts there], I'm waiting for
a couple of books from Amazon that are supposed to be good resources
about rights and strategies for IEPs, and planning to reschedule the IEP
meeting for *after* the 16th.)
We had a terrific respite weekend this weekend! We finally got the
chance to celebrate our 15th wedding anniversary, in Berkeley Springs,
WVa. We stayed in a nice B&B and spent most of Saturday hiking
around parts of the C&O Canal towpath, including something we've
always wanted to do, the Paw Paw Tunnel. The weather forecast for the
weekend had looked dreary all week, but other than having to wait in the
car for about ten minutes while a brief thunderstorm passed, we had
great weather. All together we figure we hiked over seven miles, and
being totally unaccustomed to that sort of exertion, we needed hot baths
when we got back to our room. 
After we recovered a bit, we had a wonderful dinner and a walk around
town (which unfortunately for me was marred by intestinal cramps 
). I was still having cramps when we went back but managed to recover
enough to have the wine we'd brought and a little cheese and crackers.
Yesterday morning after another of the B&B's great breakfasts we
went exploring the galleries and gift shops in town. After that we were
feeling the pain from the day before, so decided it was time to explore
the Roman baths at the state park. (Berkeley Springs State Park is the
only one I know of that has as its major purpose being a spa). Turned
out to be a bit of a wait so we got lunch and came back to our
750-gallon hot mineral water bath for two. After half an hour of that we
felt a whole lot better, and it was time to head south. We stopped for a
round of mini-golf along the way (I was giving Bob a pretty good run
till the last hole
) and got home five minutes before we said we would. 
Except for the cramps, it was an outstanding weekend that really
reminded us how much fun we used to have together.
This morning was the marathon annual cerebral palsy clinic visit at the
children's rehab center. We were there from 8:20 - 11:30, and saw an OT,
a PT, a doctor, an SLP, and the education specialist. Neither the OT nor
the PT seemed particularly sure why we were on their schedule (I think
mostly because some power-that-be thinks that kids that are seen in the
CP clinic should see an OT and a PT). As long as we were there, the OT
showed us some bath chair options, since we are getting to the point
where it's hard for me to fit into the tub with her. The PT mostly poked
at Laurel's legs some and asked if we had any questions for her. When we
got to the doctor, the first thing we did was ask him to look at
Laurel's right leg, because the incision on that leg is looking infected
(I *know* it looks worse than it did last week). We had a couple of
orthopedic residents dragged down and finally the orthopedist himself,
who decided that we could get by with Bacitracin ointment and cleaning
it frequently. I hope he's right! I think after the cellulitis that
hospitalized her a couple of years ago, I'll forever be nervous, but
we'll give it a try and if it doesn't look better soon, he'll definitely
be hearing from me. We also told the doctor that we think we've seen a
few small breakthrough seizures in the morning the last couple of weeks
(Bob especially thought he saw one this morning, and the respite
provider reported one too).
She *has* gained a couple of pounds recently, though, so maybe she just
needs a bit more medicine (I hope). His nurse is going to give the
neurologist's office a heads-up that we're going to get a blood level
taken (we'd have done it today but it has to be done in the morning
around when she's due for her dose) and hopefully we can just have a
phone consult afterwards. The doc also says her growth isn't too bad but
it's a little off so he wants us to see a nutritionist. We hate the one
we've seen there before (we've found ourselves educating *her* ) but
they've got a new one so we'll give her a try. Laurel was in an
absolutely horrible mood by the time we got to this point (I'm sure
having six people poke at her incision didn't help any, plus she was
having gas) so I think that may be another reason the doc wasn't as
complimentary about how well she was doing as he'd been last year.
So then we saw the SLP. We were afraid we weren't going to get
*anywhere* with that appt since Laurel was approaching meltdown, but
fortunately Laurel liked the applesauce and calmed when she started
eating. Pretty soon she was in the best mood she'd been in all morning.
But she did gag when she was given some applesauce in a cup, and the SLP
said a) that she could see why there was concern about Laurel's swallow
and b) that she didn't think Laurel would ever be able to eat enough to
sustain herself.
She said that she felt that we should just focus more on speed and
quantity of purees and not worry about thickened liquids right now. If
Laurel's puree eating gets better, then we could think about the swallow
test. All kind of discouraging. I'm not sure how seriously I take her
pronouncement, though, because I feel that Laurel not being able to
handle a cup well after not being exposed to it for almost a year isn't
a really big surprise. She was doing much better with it last summer
with her old SLP than she was today. (The original SLP never did return
my call...I should probably try at least once more before giving up.)
Anyway, this SLP did agree that trying to increase Laurel's proficiency
with purees is a reasonable goal for her at school. She is supposed to
write up a report for us and then it will be up to us whether or not to
share that with the school (although, since the school knows we were
going to see her, I expect they'd be suspicious if we *didn't* share
it).
Then finally, we met the education specialist, who said that she is
available as a liaison between the rehab center and the school. Worth
something, I suppose. Although we shared our tale of woe from the IEP
meeting with her, and she agreed that it wasn't handled well but didn't
have any helpful advice.
So there you have it...nice weekend followed by being thrown right back
into the pot. An infection to clear up, seizures and nutrition to worry
about, the fight to get feeding goals back into Laurel's IEP to continue
to prepare for (one of the two books I ordered from Amazon about special
education advocacy came in last week). Can I have another weekend now? 
I didn't get a chance to look at Laurel's incision this morning (Bob gets her ready for school), but last night when I put the ointment on it before bed I thought it seemed less swollen and red. But now we're putting ointment in TWO places! Yesterday Laurel got some really bad scratches on/near her eye because another kid hit her to make her stop crying. The school called and Bob took her to the doctor (I need to save my sick leave, more next paragraph). Fortunately the scratch on her eye was only on the white, but she's also got a bunch of scratches around her eye that we're treating with opthalmic Bacitracin. She looks terrible, but Bob assures me she looked much worse when he picked her up!
The reason I'm conserving my sick leave is that I've only got three days' worth and I need all three of them for the laparoscopy I'm having next week. We had a consult with the RE last week and basically we are down to IVF or the lap, which would be to look for (and clear up, if found) endometriosis. I did *not* realize that endo can cause cramping during AF, which I've always had but it's gotten really awful lately. I just figured I was going through a bad spell (AF has changed character on me a number of times through the years), I wish the RE had brought this up sooner! Anyway, if I have endo it could explain a lot about why I haven't gotten PG yet. If the RE does find endo we'll probably try another IUI or two before moving on to IVF. The lap's on Wednesday, then I'm supposed to take Thursday and Friday off.
I'm so glad I tried calling Laurel's former SLP again...
I don't know why she didn't return my call the first time, but she did this time, and we had a long conversation last night. We now have a plan, and I feel almost limp with relief. The plan is:
1) We let the feeding goals go for now and say that we want to call another IEP meeting to revisit them in September.
2) We get a prescription from Laurel's doc for feeding evaluation and treatment (I've got the call in).
3) Former SLP takes Laurel back on as a private client, does a thorough re-evaluation (i.e. not 15 minute! She says that she feels it takes about four sessions to do a good evaluation) of where Laurel is and works with her over the summer.
4) Toward the end of the summer, she writes up a detailed list of goals with bite-sized (no pun intended), measurable milestones to be included in Laurel's IEP in September. (This is partly where the former SLP thinks things fell apart this year - that the goals she wrote were big ones that required 25 intermediate steps to be carried out to get there, which were fixed in her head but obviously not so much in the new SLP's head.)
5) Assuming the goals are included in Laurel's IEP, we check at the progress reports to be sure they're being carried out.
6) If there are problems either getting the goals included or getting them carried out, it's lawyer time.
The former SLP also said that she completely disagrees with the
assessment that Laurel will never be able to eat for nutrition. (I kinda
thought she would.
) Although she did say that it would take a couple of years of working
harder at it than we've been working at it to get Laurel off the tube,
but she totally believes that it's possible. (I love this gal.
)
The nerve-wracking things about this plan are that it could be expensive (at the least we're going to be stuck paying her co-pay, and at the most our insurance might decide not to cover it...then there's the whole lawyer thing if we have to go that route...) and whether it will go down OK in the fall or whether we *will* have to go the lawyer route. But it's a plan and I'm feeling a *whole* lot better than I was. Meanwhile, I am going ahead and reading Wrightslaw: From Emotions to Advocacy and another book I got. Given the teacher's attitude, I still figure I need all the help I can get to try to keep from killing her. (Last night, after I'd asked in Laurel's notebook what the plans were for the summer [I know they've got something from the powers-that-be about it, I saw it briefly at the IEP meeting], the response in the notebook I got was "We will decide that as a team at the June 2 meeting." It took ALL my strength to keep from writing her back and saying "You mean like 'we' decided as a team about Laurel's feeding goals?" It was really a good thing I talked to the SLP last night because I was *this* close to ripping the teacher a new one...)
More or less back among the living after my laparoscopy on Weds...
WOW, I really had failed to appreciate how much pain I was going to be in afterwards! The incisions really aren't so bad, it's the pain from the leftover CO2 that they blow in. I have been such an aching mess! But I'm starting to be able to move again. I have a feeling that by tomorrow, I may be feeling half decent. Wish I could say the same for Laurel...she's running a fever and is totally miserable! She's asleep right now, but I've already heard one whimper so I'm not sure how long that's going to last. Bob's gone out to get some more Motrin for her.
Anyway...the doc only found a couple of small spots of endo. He cleaned them out and said that may up my fertility slightly, but probably not that much. I was really hoping for more! Both from a fertility standpoint and from a pain-during-AF standpoint. Oh well, I guess if I hadn't had the lap done I'd have always wondered. If the endo had been significant, we'd talked about doing another IUI, but I think we're still heading for IVF. Unfortunately the doc's going to be out of town, so I don't have a follow-up appt with him until June 14, which means probably another lost cycle.
Laurel's up and crying now...and Bob's back with the Motrin...so gotta go...
So, Laurel has the croup!
And may I say, we have one of THE most wonderful pediatric practices. I called the answering service because along with the fever, Laurel's breathing was fast and shallow. The on-call nurse called back and had a listen to Laurel's breathing over the phone, then called the on-call doctor. She thought over the phone that it was *probably* the croup, and debated a bit on whether to send us to the ER, but gambled that it was bad enough for a steroid shot but not bad enough for the ER and had us come meet her at her office. At 10:45 PM on Friday night! I meanwhile haven't taken a shower since Wednesday morning and I'm downright scary-looking, but I didn't want to not be there if Laurel was going to the ER so I threw on some clothes and a bandanna on my head and off we went. The doc checked her oxygen sats, which were good (97), confirmed that it didn't sound like there was any pneumonia (we had both been thinking that sure as heck, she'd probably gotten aspiration pneumonia because throughout this fight over her feeding therapy we've been bragging about how she's never gotten it), and decided that since Laurel was already so bad and the croup usually peaks on the third night, the steroid shot was a good idea. We were SO proud of Laurel, she didn't cry at all during the shot! Just gave us a pouty face. And now we get to be home instead of at the ER. BOY do I love her pediatricians! (This wasn't even Laurel's regular doctor - she had a baby yesterday!)
Anyway, we are feeling relieved that it *isn't* pneumonia and that
it's something semi-normal (the doc said it's not as common with 4 &
5-year-olds, but it can happen), that we've done what we can, and that
we're home again. If anybody's still out there reading, send sleep
vibes, OK? 