Updates on Laurel: February 2003

[Posted by Bob] Laurel is in the hospital. We don't think it's anything too serious, but you never know and we want to be sure. She has a nasty infection going on around her g-tube site. It started on Friday with it being tender and a bit pink. We were in PA for her re-evaluation with NACD through Saturday. It didn't look too much worse (if any) on Saturday through lunch when we started to drive back home. By the time we got home, though, it had really gotten red and inflamed and nasty looking. Rochelle took Laurel's temp and she was running a very slight fever (100.2 rectally) so we called the after-hours number for her pediatricians and the pediatrician on call called back and pretty much immediately sent us in to the ER. At the ER (after the typically long wait) the surgical residents were called in (since the g-tube was inserted by a surgeon and that surgeon still sees Laurel periodically when the valve needs to be replaced) and after a quick call to Laurel's surgeon it was decided that they would give her some antibiotics via an IV and monitor her in the hospital for 24 hours. They drew a line around the infected area and Rochelle said that by the time all of the IV poking had finished and Laurel was finally settling down (probably an hour later) that she thought it had already spread outside the line in a few places. So, it was probably the right thing to do to get this seen quickly and treated aggressively. She'll probably be fine and we'll probably all be home either late tomorrow night or early Monday. But its still kinds scary. I'm at home now trying to get some sleep. When I left them, Laurel was finally sound asleep but they were still in the ER waiting for the slow wheels of the hospital to turn up a room and move her up to it. I'm sure Rochelle will have a book for you all to read when this is over and we're all home (this episode plus the evaluation at NACD - which went pretty well, I thought). In the mean time, if you all could keep Laurel in your thoughts for the next day or so we'd really appreciate it. Thanks everyone.

Thanks for the prayers! Laurel is doing better. The g-tube site is still pretty swollen but not as pink and not quite as tender. And Laurel is acting as though she's feeling better, although she's exhausted (as are we all). I'm at home right now (Bob's at the hospital, and I came home to try to get a little uninterrupted sleep, but only managed to get two whopping hours on top of the three highly-interrupted ones I had at the hospital) but heading back down to spend the night with her. They are keeping her at least until the morning. The doctors only looked at her for about a minute this morning so I don't know anything about what might have caused it or how good it needs to be before they send her home. But hopefully, the next time you hear from me we'll all be home. Thanks again!

Thanks again - we're home, but it didn't work out quite the way I was planning!

However, it didn't work out the way I thought it was going to with my staying with her until she was discharged! I went back to the hospital last night, got us some dinner from the cafeteria and watched Bob work on his laptop for a while (Laurel had *finally* fallen into a deep sleep). Before Bob left, I was starting to feel kind of gross stomach-wise, but was putting it down to too much fried cafeteria food and not enough exercise. I'd tried walking around the hospital a bit. So, he left sometime before 11:00 and I got her feeding started, got the cot out and put on my nightgown. No longer feeling like doing much but laying on the bed in a daze. Laurel woke up and started to cry about 12:15 and I got her out of the crib (I'd just left her there during the feeding since she was sleeping so well). I was sitting there holding her and the smell of latex was just making me nauseous. By 1:00 AM, I was convinced I was getting sick so I called Bob, who of course was thrilled (NOT). But I was, um, sick from both ends (sorry) by the time he got there and sick again when we tried to leave the hospital (by the time he got there, I wasn't in any condition to drive myself, so much as we hated to we had to leave Laurel with just the nurse for a while). Once he got me home, I was in the bathroom about every 20-30 minutes until around 8:00 this morning. Nothing's happened since then, I've had some water and ginger ale and I just got brave and tried a little applesauce. So far so good. Bob feels like he might be getting sick too, though, and anyway, he's exhausted, having gotten 2 hours of sleep last night and 4 the night before. So I will try to take Laurel this evening, I feel too weak to carry her far or do too much with her though. Hope she's up for books and TV...

So that's the update. When I'm feeling better, I'll post about the trip/evaluation. Hopefully we'll all recover soon!

Well, the interminable IFSP meeting from you-know-where ended 5 hours ago and I'm still angry and disappointed, so you lucky people get an earful. 

To begin with, I'm floored to learn that Laurel receives MORE EARLY INTERVENTION SERVICES THAN ANY OTHER KID IN OUR REGION (Central Virginia, for the curious). How insane is this? What she gets is speech therapy 2x/week, occupational therapy 2x/week, and physical therapy 1x/week. I know of kids her age without even close to her level of impairment who live in other states who get twice the services and more. We learned this at Laurel's IFSP meeting tonight, and it caused Bob to comment "Gee, Ellen at NACD [speaking of which, I know, I know, I owe an update, I promise one's coming, but I don't have much 'puter time tonight and I've GOT to get this off my chest] commented that she doesn't really think Laurel receives services very frequently, and in particular, she doesn't receive PT often enough to do any good." To which the PT's response was that if Laurel progressed more quickly she'd see her more often! She said that Laurel was just barely progressing enough in gross motor skills to be worth seeing at all. Apparently only kids that progress quickly are worth seeing twice a week (I guess any more than that would be absolutely unheard of). And when, in reviewing Laurel's goals, I said that I was really more interested in seeing her belly-crawling (which wasn't in her goals) than rolling (which was), the PT added it but I could tell she was reluctant. (I should add in here that Laurel does roll, but not consistently or sequentially, and has also belly-crawled about a foot a couple of times while we've been doing "prone conditioning.") And then the PT informed me that rolling really *was* important, reason being that the thing to think about is what if they still can't move themselves by the time they're 10 and to start preparing now for that eventuality - the rolling therefore being important so Laurel can move out of the way when we change her bedclothes. The PT had also said earlier in the session that she really felt that she should be focusing more on adaptive equipment and not so much on working physically with Laurel anymore. And this woman is absolutely the most respected PT in this area. And, most of the other PTs in the area work for her - she owns the major therapy center here. One of the things that PO's me about her, too, is that she admitted to Bob not too long ago that she never ever would have expected Laurel to recover as much as she has. So why does she *keep* writing her off?

Anyway, back to the frequency issue. We got quite a grilling on whether 5 sessions of therapy was leaving Laurel too exhausted and were informed that too much therapy was bad and wouldn't leave her enough time to assimilate the therapy. However, we stuck by our guns and for now, she will continue to receive her 5 sessions of therapy (although I'm starting to question why we're bothering with the PT; I guess though, short-term, we really could use a better seating solution for Laurel...). But, her ST was instructed to work toward cutting down to 1x/week, which I think would be a shame as I think Laurel finds her sessions intellectually stimulating and enjoys them more than any other. (*I* also enjoy her ST, who is by far the most upbeat of her therapists and was the only one to say that she feels that she sees Laurel progressing in some way almost every week.)

I guess I shouldn't be surprised, but I honestly hadn't realized how much of a rabbit hole we had fallen down here until tonight. Sigh...

Update on Laurel, and finally, her NACD re-evaluation.

Now, her re-evaluation. Driving up there was an adventure too - we went right through the middle of the Feb. 6 snowstorm, which at that time was being billed as "the worst since 1996." Little did they know - at least we didn't try to drive through THIS snowstorm! Although in retrospect, we were probably idiots; still, we got there without any real incident. Turned out we were the only ones who hadn't canceled, so we got plenty of time with the evaluator! This time it was the founder's sister, Ellen Doman. She has been our support person, but this is the first time she's done the evaluation. I felt like she spent more time observing Laurel than Bob Doman did, although maybe some of that was the cancellation thing. ;-) She spent a bunch of time watching Laurel try to pick up a string of beads on the desk that she highlighted with a flashlight. She observed that Laurel picked them up with sort of a two-fingered hooking motion, not as sophisticated as a pincer grasp but more advanced than the full-fisted grab that an infant would make. She also noticed that Laurel tried repeatedly to look directly at the beads and could hold her gaze on them for a second or two, but then her eyes moved away and Ellen thought that it was actually muscle control of her eyes that was the problem. Ellen also watched Laurel play with a toy that had various buttons to push. It was a large toy with a lot of small buttons, so it took a fair amount of assistance from Bob, but it was obvious that Laurel thought it was interesting at first but got bored with it after a few minutes. Finally, she watched Laurel on the floor on her tummy, which brought home to her I think in a way the NACD folks hadn't quite gotten before that Laurel has no problem with moving her legs in an appropriate crawling pattern, it's all in the arms. Also, we told Ellen various anecdotes about things we'd said to Laurel and gotten appropriate responses on (for example, in the car on the way up, she was carrying on to the point we were afraid she was going to throw up and I told her, "Calm down, Daddy's looking for a place to stop now," and darned if she didn't). I'm not totally sure Ellen believed us because she said that if Laurel understood that much she should be talking, but when Bob told Laurel to look at Ellen and she did I think that helped convince her. It seems so often that Laurel's *trying* to say something when we ask her to that I really believe that it's as her speech therapist says, she has major motor planning problems.

So, what did we get out of all this program-wise? For Laurel's vision, Ellen wants us to keep up with the pleoptics (the "flashlight thing" as Laurel's babysitter calls it) and also wants us to try pinhole glasses a couple of times a day while Laurel watches TV to work more on her central vision. For her arms, we're supposed to do this long sequence including tactile glove and deep pressure on her arms (as we've done before) as well as warm rice bags on her arms, a shoulder massage and then the bags on her shoulders. Then some patterning motions with her arms, hamstring stretches for her legs and some patterning motions with those. Then we're supposed to put her in her creeper (kind of like a walker for crawling - but it's supposed to hold her arms up somewhat so she can just crawl with her legs). Which (BLUSH) we were told to make last time and still haven't finished. The hang-up has been making the vest that goes around her and then attaches to the frame, which I've been trying to do. I worked on it for three weekends before we went for the visit, hoping I could at least report it was done, but it's taking me forever! I have very little experience sewing, in case that's not abundantly clear. Anyway, I FINALLY finished it except for the velcro on the straps Monday night, but when we put it on Laurel and put her in the creeper to see where the velcro should go, it was clear that it wasn't supporting her in the right place and she was very uncomfortable and had a hard time catching her breath afterward. So, try try again - the next thing I'm going to do is try attaching a couple more straps up at the shoulders (the ones that are there are coming off of her chest/waist) to see if that distributes her weight better. The good news is, her legs were moving like crazy and if she'd had anything on to give her some traction she'd have been flying down the hallway.

Otherwise, we're continuing to spin her (we weren't told to continue to roll her but I feel that that's helped her vestibular problems more than the spinning has so we'll keep doing that too) and play with cause-and-effect toys. We're to show and name objects for her and encourage her to repeat the words (or at least make some sound in response). We're supposed to get lots of different tapes from the library with children's stories to play for her, both to work on her auditory processing and just to keep her interested. And for her oral motor skills, we're supposed to have their speech/feeding therapist consult with our ST for a new program piece.

So there you have it. Ellen was very complimentary about how far Laurel's come, and talked a lot about the importance of keeping her from being bored, which is getting to be a *real* problem - but, it beats not having that problem, which we didn't a year ago. And, I am rather worried about how much we're going to be able to get that long sequence done. Sometimes I feel so tired just thinking about all the work there is. But of course, right now after over a week of miserable girl with a side of extra crank, I'm just tired, LOL! Hopefully after she's been feeling better for a few days we'll be feeling ready to go again.

Our little girl needs glasses!

So, first off, we're back from NC! We had a wonderful time at Ami's!! We also stopped for a quick visit with Eone (sluggosmama) who fed us some of her great homemade soup before we went on to the Virginia Eye Institute today. We took Laurel there because we weren't very happy with the pediatric ophthalmologist in town. I think he probably went to med school, oh, about the time I was born, and hasn't really kept up. I wasn't totally thrilled with this one either, though. The good news is that she thinks Laurel is doing a pretty good job of controlling her strabismus (wandering eye) already and may well not ever need surgery. The bad news is that she found that Laurel is nearsighted, has astigmatism and needs glasses! She did say that Laurel would probably do even better with the strabismus with the glasses. But I was hoping for a more enlightened view from this doc wrt Laurel's cortical vision impairment, and didn't get it. She said that if Laurel doesn't look directly at things, it's probably because they don't capture her interest because she is too cognitively impaired. She even said that the reason Laurel didn't respond to the rotating drum when it was spun vertically, but did when it was spun horizontally, was because "she didn't find it interesting in that direction." I guess part of me worries that I'm being delusional to think she's wrong. But it also occurs to me that the *only* thing the doctor herself did with Laurel was to examine her optic structure, so how would she know? (There was some sort of technician who came in earlier and did the work with the drum and various lights and toys. It was all we could do to keep Laurel awake during that, though, since she had decided it was naptime.) It seems to me there have been lots of times that Laurel has stopped fussing when talked to or offered a toy that she never looked directly at the person or the toy, but if she quieted down, presumably it captured her interest, no? So I guess I'm sticking with the idea that there's more to it than that Laurel is too stupid to care. But I'm disappointed that the doctor wasn't more help. And bummed that we'll have to obscure those beautiful blue eyes with glasses! Although maybe she'll do better visually once she sees more clearly. I hope so!