Updates on Laurel: July 2003

We've been in Pittsburgh the last few days...we'd already planned to go up for the 4th of July, and then when my mom got her dermatologist appt for the 8th we decided to stay so I could go with her. The doc told her the spot on her nose is probably a basal cell carcinoma. That's the least dangerous kind of skin cancer - generally, once it's removed, that's that. Although the doc also offered the option of x-ray treatment and I think she may go with that, assuming that's what it turns out to be. They did a biopsy and she should get the results in about a week. She didn't say much one way or the other so I'm not sure how she's really feeling about this. Otherwise, she seemed in better spirits than she had at Memorial Day and went to dinner with us every night (except the one we went to Kennywood) and went shopping with me a couple of times for Laurel. She still can hardly walk without panting and isn't doing much, though. I cleaned out her fridge while I was there and think I deserve a medal or something ;-) - there was stuff in there that had expired as far back as 1986 and *most* of it was clearly stuff that my dad would have eaten that had expired somewhere between '98-'01 (he died in '99). :-O While normally I'm a faithful recycler I couldn't bring myself to open that stuff so out it went (it would have added hours to the process to clean all those containers, anyway). I also took her old (actually our old) computer over to be recycled and threw out a big garbage bag of miscellaneous non-refrigerated expired stuff of my dad's. And cleaned out all the crabgrass from around his headstone. I'm beat.

On a more fun note, we took Laurel to Kennywood, which is a traditional-type amusement park and the one we usually went to when I was a kid. The park folks told us we could take her on 5 kiddy rides (all ones that we could go on with her) but we wimped out of the tower drop one (we just weren't convinced the restraints were sufficient for her and even though it was a short tower it was still a long way to fall!). I think she liked them all except for the really spinny one (one of those things where the ride spins and the cars spin too). She smiled at me on the mini roller coaster, but I had such a hard time keeping her head from banging into the bar on the sudden, jerky stop that I didn't feel my gray hair count could sustain another ride. I do think she had a good time but I hope she's more able to hold herself by next year - she was trying hard to sit well but it was still a lot of work to keep her from going anywhere on any of those kiddy rides, which strangely enough were bumpier than the adult rides! We also took her on the carousel, the train and the old mill ride, and Bob and I took turns going on the roller coasters. They had pretty nice fireworks too.

Otherwise, it was a pretty quiet weekend and after being gone the last couple of weekends (the weekend before, Bob went to observe at a telescope in West Virginia and Laurel and I went with him - the big event that weekend was a scenic train ride, the Cheat Mountain Salamander, very pretty!) I think I'm looking forward to being home this weekend.

Laurel had her first professional haircut today! It went *much* better than we expected. She fussed at the beginning and a little more at the end, but overall she was a champ. I wish I'd brought my camera because she looked so cute in her little cape! We did take "before" pictures and I'm planning to take "after" pictures but we had a changing table accident that resulted in a bath and now the ends of her hair are wet. That shot the cute job the hairstylist did of curling her ends under (although honestly, it was coming out anyway) but you can still see the nice feathered bangs. We didn't have a lot taken off the ends, just got them evened up so she doesn't have all these straggly bits. The stylist did a good job and it really turned out to be less of a hassle than doing it myself so I expect we'll be back. :-)

Also, I wanted to share a couple of things from the visit from the vision therapist we had today. As usual, we didn't learn anything useful about Laurel's vision or what to do for her but we *did* learn that the doctor I scheduled a functional vision evaluation with in Pittsburgh in October is considered THE #1 expert in the world on cortical vision impairment. I had no idea, I got the appointment there because I couldn't find anyone who could do a good evaluation of Laurel's vision here, and someone on one of the special-needs lists that I'm on recommended the Western Pennsylania School for the Blind, but they only do in-state but recommended this other person. I'm pretty excited that we are FINALLY going to talk to someone who really knows something! The vision therapist was actually jealous of us for getting to talk with her.

Also, the therapist commented on how much progress Laurel has made (she only sees Laurel a couple of times a year). Bob said that Laurel was doing a lot better than her PT ever expected and the vision therapist said she agreed. And added that things seem promising. :-)

Oh, and while I'm on the "nice things therapists have said lately" thread, last week her OT said that she thought Laurel's receptive language skills were on track for her age and that Laurel seems to understand at least part of everything she says. :-) :-)

We had a marathon at the children's rehab center on Friday. It started at 11:45 and we didn't get out of there till 4:30. It would have been even worse if we hadn't canceled one appt (the nutritionist, who as I've posted before we think is an idiot - we're trying to get an appt with one in Richmond instead) and had someone cancel another one. We started with audiology, which was because Laurel's neurologist was worried that she might be hyposensitive to some frequencies (as she is hypersensitive to others). Unfortunately, the very first thing we started with was weighing and measuring and she was so freaked by that we couldn't get her to settle down for the audiologist. Mostly, I think she's going to be really difficult to test because she either has to be able to respond by looking or button pushing (and she's not consistent enough with either) or she has to be asleep (different testing method for that, obviously!).

The next thing was an OT. We weren't completely sure why we were scheduled for an OT (we'd been scheduled for a PT, too, but that's the one that canceled) since Laurel has one but we thought it might be to talk about seating. All he did on that front though was to recommend meeting with the same guy that our PT is already setting us up with, so that was pointless. He did also talk about bath chairs with us and we tried Laurel in some so that was more useful.

The next thing was the nurse practitioner for the CP specialist. The specialist himself was on vacation, which seems goofy since it was his office that set this extravaganza up in the first place (we don't really have any input in it, they just send us a sheet that tells us what day we're coming in - it doesn't even have all the appts on it, we had to call to find out). So, we just generally went over with her how Laurel was doing, and she said she thought Laurel was doing great. I did tell her about how I had wanted to get Laurel into hippotherapy (horseback riding therapy) but couldn't find a program (the big one around here lost its lease and hasn't been able to find another one) and she seemed to think she might be able to find something else, so that would be good. Although now our schedule has changed again so it wouldn't be as easy - last winter the therapy schedule changed so that Laurel didn't have any during the day on Monday when I was home with her, but we're back to having two sessions. I think it could really help with her sitting and balance though so if she finds something I'll try to find some way to make it work out. She is also supposed to talk to someone about giving us a hydrotherapy program we could do with Laurel when we take her to the pool at the gym. And she gave us a book about children with visual impairments - I think it might be too general to be useful to us, though.

Then, we just briefly met with the education specialist and went over with her what she might be able to do for us. It sounded like she's mostly kind of a resource if we're having trouble communicating with the school, although she's not an advocate. Since that went short, we *finally* got to snarf down the lunches we'd packed.

Then, finally, the appt we'd been dreading...the orthopedist. It wasn't the same one that had reamed us out for not keeping Laurel's AFOs (ankle-foot orthotics) on 12 hours a day - that one moved to Atlanta, dang. ;-) This one was, although still not exactly warm and fuzzy, at least less inclined to treat us like idiots so that was something. He did tell us that 8 hours a day is generally considered to be what's needed to keep the hamstrings stretched (unfortunately we're still only doing about 5 on a good day - that's about all Laurel can take till she goes into complete meltdown). He suggested something that I am not feeling too enthusiastic about but will probably ask around on the special-needs boards about before we dismiss completely. I suppose it would be a better alternative than surgery, which is where we might ultimately have to go if we can't keep her hamstrings stretched. What he suggested was that we have Laurel's calves injected with Botox. Then she would have to wear casts on them for 3 weeks. The Botox would basically kind of paralyze her hamstrings into the more stretched position for about 3 months, and if we kept up the AFOs the idea is that it could permanently make it easier to wear them and keep the hamstrings stretched. But I have to say, I feel queasy about the idea of putting her in a cast for 3 weeks and partially immobilizing her legs for 3 months. He claimed that she'd only cry for the first day but then she'd figure out that that was the way it was and she wouldn't cry anymore. I dunno, he doesn't know Laurel - I think she'd probably figure out that that was the way it was and cry anyway. I wonder if he's related to the vet that claimed our cat would only cry for the first 45 minutes of the drive to here from Pittsburgh? I also worry that it would totally kill any chance to work on mobility with her for those 3 months. On a more positive note, he said everything else (back, hips, etc) still looks good.

So, that was the end of the formal appts, but then we had to wait around to get some non-slip stuff put on the bottoms of Laurel's AFOs (her PT wanted it for working with her in her Pony walker), and then we tried for audiology one more time b/c Laurel was on the verge of falling asleep, but of course she woke back up when the audiologist started to poke at her. So we packed it in for the day.

At least we had some fun last night! I don't know if you remember, last fall we got 24 hours of respite care and we stayed up in Shenandoah National Park and saw a singer in the bar there. We bought his CD and it's turned out to be one of Laurel's favorite CDs (sometimes she'll calm down just on hearing the first note of it). So we thought it would be fun to take her to see him. Since it *is* in a bar we weren't sure about it (I had called just to make sure it was even OK to bring her in) but as it turned out last night there were lots of other families there too. In fact at one point he even passed out percussion instruments to the kids - Laurel got an egg-shaped shaker which Bob helped her with and she really enjoyed that. She had a great time and we did too! I think we'll definitely have to do that again.

We think Laurel has finally gotten the "Big Idea" of moving herself. We had wondered a little earlier this week, when Laurel's babysitter reported that she had left Laurel on the floor and come back to find that she had rolled to her tummy and gotten rug burn on her nose! Tonight Laurel was lying on the bed next to Bob when she decided to roll to her tummy again (she's known how for a couple of years, but it's not something she does much). Then she wriggled around and moved herself a ways before she rolled to her back again (now THAT was a first - she's known how to roll to her back even longer than her tummy, but again, it's not something she often does spontaneously and she's NEVER done them both on her own in the same session. In fact, it used to be on her IFSP and her PT gave up on her ever doing it and took it off). Well, at that point Bob had to go get her feeding ready so I was sitting there watching her and she still seemed like she was trying to go someplace, pushing off with her feet etc. So I rolled her back onto her tummy and this time we're sure she was trying to crawl. She was crying in frustration part of the time because she couldn't get her arms to do what she wanted but then she'd calm down and try again. She ultimately made it a couple of feet before it was clear she was tiring and Bob took her to feed her. We are SO happy though because we really believe that if Laurel wants to move herself, she will, and for the first time we saw that she really wanted to!

Last night Bob put Laurel on the floor to stand. She loves to try to stand, has for a long time, although she needs to be steadied along her sides and struggles to stand straight. Anyway, Bob set Laurel to stand facing him and she took a couple of steps towards him! Then we asked her if she could take another step with her left leg and you could see it was SO much work but the left leg slowly came up shaking and stepped forward. We're excited about this because although she's stepped a few times with our pulling/pushing/prodding she's never done it on her own before. (It's also pretty neat that she understood what we asked, although she's been doing fairly well with that lately so that wasn't the most exciting part.) We think it bodes well for her to be able to eventually walk with support. :-)

BTW, she's been feeling kind of lousy the last couple of days - we're not sure if it's a cold, allergies, or even some teething side effect - but she could use a few feel-better vibes! Her g-tube button's been leaking a lot too - Bob had to change her clothes 4 times yesterday. (We are supposed to see the doc again about that on August 4.) I was all psyched to work with her on crawling this week but haven't done much between her feeling lousy and the leaking. But I guess she wanted to move anyway. :-)

Oh yeah, about the Botox...we have decided that we are not going to do it right now, and Laurel's PT and OT support that decision. Not to say that we might not at some point in the future, but not right now. Both because we're afraid of squashing her newly-developing interest in moving herself and because we think that it's possible Laurel's issues with her AFOs may stem partly from her sensory problems, in which case Botox/casting won't help. We are going to try to work more aggressively on her sensory issues with her feet (using brushing, different textures, etc.) and see if that helps.

An update on me...

First off, Bob and I have had a couple of real discussions in the last couple of weeks. He's admitted that he's been a real jerk lately and I think we both realize that we need to talk more before it gets to the point of shouting. And, he also had a long talk with his new boss and things seem to be stabilizing for him at work. Life has been calmer around here the last couple of weeks.

Secondly, I was reminded that our office has a free limited-term (five sessions) counseling service. So I've been to see the counselor twice so far. I'm not sure how much I'm getting out of that, but so far it's mostly been sort of a debriefing anyway. I think next week is going to be more of a "where do we go from here" session.

Thirdly, a few days ago I stopped taking St. John's Wort and think maybe I *do* need to be on something. I was on Prozac years ago (about 9) and have taken St. John's Wort off and on for the last several - it's usually worked for me without the nasty sleep deprivation side effects I had with Prozac. This last time, I felt like it wasn't doing all that much so I stopped taking it after about two months. And realized that I was wrong, it was too doing something because boy did I feel worse when I stopped. I talked about that with the counselor this morning and she agreed that I should talk to a doctor. So I went to see one this afternoon (my regular one turned out to be on vacation, so it was another one from the practice that I felt reasonably comfortable with). She also agreed that an antidepressant might be a good idea - but she also asked me some questions and after finding out that my cycles haven't been regular lately (I used to be 28 days like clockwork, the last few months they've been anywhere from 25 to 31 and getting weirder all the time) and that my dad had thyroid problems, she took a blood sample. I'm supposed to get the results back from that tomorrow afternoon or Friday. So the plan is, if my thyroid's not OK, treat that. If it is OK, she gave me a 6-week supply of Lexapro to try.

Finally, I took a bead earring class last week. :-) I figured that way I'd feel a little less funny about showing up for the free lunchtime thingie, plus maybe I'd get some inspiration. So now I just need to get my stuff organized for the lunch next month.

So that's where things stand with me. I'll let you know what I find out from the blood test. Thank you all again for your support when I hit the wall a few weeks ago!

And, Laurel and Bob need some get-well vibes! They're both sicker than sick dogs, Bob tells me ("because it's not saying much to say you're sicker than a well dog..."). Laurel has a nasty cough and I think she might end up seeing the doc tomorrow. We're supposed to go up to New Jersey this weekend to visit Bob's brother before going on to Laurel's NACD re-evaluation in PA, but we may be cutting out at least the NJ part if they don't turn around soon.

Thanks - I'll let you know if we see the doc!

[Posted by Bob]

Laurel has an ear infection! 

And we almost didn't go to the doc today. I swore last night as she was feeling so miserable that I would call the doctor this morning and take her in. Naturally, Laurel woke up in a pretty good mood (although she only got probably 4-5 hours of sleep) and she seemed better, so I didn't. I did cancel her therapy sessions today. She took a short nap at 1:30 and woke up at 2:30 feeling obviously worse. By her feeding at 3:30 she was pretty miserable and then when the round of drugs (Motrin, Sudafed, Robitussin) didn't produce any noticeable improvements by 4:00 I was pretty sure I was going to call the doc.

Then she threw up and I was sure.

By 4:40 we were seeing the doctor and by 4:50 we had the word - ear infection in her right ear. So, that explains why she started to get worse a few days ago when she seemed like she was getting better. I'm SO glad I called the doctor before they were closed. I just wish I'd gone this morning. I was so sure it was going to be just a cold, too, because the minute we got in the car she calmed down and she was practically perky at the doctor's office. I think she's also a little bored with daddy today. I'm feeling a bit better, I think. Hopefully with Laurel getting the antibiotics starting tonight she'll be feeling well enough to travel by Saturday. Thanks for keeping us in your thoughts.

And the verdict on the thyroid test is...normal. Actually having somewhat mixed feelings about that (nice to know I don't have to worry about thyroid problems but dang it would have explained a lot too) but I'll start taking the Lexapro in the AM.

We canceled our trip to New Jersey today...Laurel woke up around 4 AM and threw up three times, and then she threw up again this morning. She's never reacted *this* badly to Amoxicillin (sometimes she starts throwing up a little towards the end of the course) and we're hoping to heck that's not it or I'm not sure we can get through the ten days. We're wondering a little if the different type of acidophilus (which I gave her right before bed) that we had to get because the store was out of the usual kind could be the problem, but I guess the leading theory is drainage from her cold. Bob says he's been feeling kind of nauseous himself from the drainage. Anyway, we're not going anywhere until the vomiting is under control. I feel tired and woozy and a little dizzy and like my head is going to split open, so I'm not as disappointed as I might be. I felt groggy and dizzy for a while yesterday afternoon, too, so I'm worried those might be side effects of the Lexapro. I hope they go away soon!!

Of course, Laurel didn't throw up again after I posted. We gave her a feeding of Pedialyte and then gradually worked back to full-strength formula and she was fine that way the rest of the day. But, we ALL had diarrhea last night! (Laurel had had it the day before, too, but we thought it might have been the antibiotics.) Leaving me to think the answer was d) none of the above, it's a minor stomach bug. Given that I was glad we didn't go anyway, we were supposed to go to a balloon festival and I'm sure it would have been SOOO much fun in the condition we were in. Not. Anyway, everyone seems to be OK today (well, except that Laurel and Bob are *still* struggling to get over their colds, and I'm still a little groggy) so I think we'll go on ahead up to PA for Laurel's NACD appointment.