Updates on Laurel: July 2002

Well, it's a holiday and I finally have a moment to think, so I thought I'd finally sit down and write about our trip to NACD (the National Association/Academy for Child Development, http://www.nacd.org ) and the program they gave us.

We weren't too impressed with the offices! (We went to the West Chester, PA office.) We walked in and looked at the shabby couches and wondered if we'd done the right thing. It's good they're not spending too much of our money on furnishings, I guess. But we sat down and in a little while Bob Doman, the founder, walked by and said, "This must be Laurel." Soon we were following him up the stairs, and sat down across a large table from him. Most of the evaluation consisted of our answering a lot of questions, peppered by occasional comments and bits of advice from Mr. Doman. He took her and examined her for maybe 10 minutes or so at the end, although it was clear that he was also watching her while we were answering questions. When we said, "We think she uses her peripheral vision a lot," he responded, "Oh, I can tell you right now that's what she's doing." That was a point of particular concern to him - he said that people who rely on peripheral vision tend to see edges and motion. He told us that one of the best ways to stimulate her central vision was to have her watch TV! We told him that the main things we'd seen her watch were Wheel of Fortune and the Baby Mozart video, and he pointed out that both of those feature a lot of spinning. He also noted that she is not very responsive to touch on her arms and added that her lack of sensation in them would be a major reason she has never seemed very aware that she has them. Also, he agreed with us that she likely has vestibular (inner ear) problems. Altogether, he said "We really need to sock it to this little girl." He added that "She's definitely in there," although we already knew that. :-) He also said that her potential is unlimited, although I think that's their general philosophy with regards to all children.

The evaluation took about 2 hours. Then we waited on those questionable couches while he wrote up a program for her. Then, his sister Ellen Doman, who runs the West Chester office, taught us the program (after commenting, "Oh my, he gave you a heavy program." She told us we should try to get through everything once every day and then tackle the repetitions). She made an audio tape while she did that so we could listen to it later, which was good because it was way too much to digest at once.

So, here's the program:

First sequence - 7 things to be done in order, 3x a day. The point of this sequence is to help prepare her to crawl:

1. Tactile glove (2 minutes) - an exfoliating glove run over her arms and legs.
2. Deep pressure (4 min) - pressure applied to her arms and legs, just to the point that she'll pull back.
3. Alternate arm bounce (1 min) - her arms are gently bounced from a resting position to up over her head.
4. Arm and head unlocking (1 min) - she's placed on her tummy with her arms at her sides. One arm is brought up so that the upper arm is parallel to the floor with her hand still on the floor (elbow is at 90 degree angle). Her head is also turned that direction. Then that arm is lowered, her head is turned and the other arm raised.
5. Arm brushing (2 min) - still on her tummy (or back on her tummy, because we often have to pick her up and calm her down), her arm is brought up from straight down by her side to over her head and back, while brushing her hand along the floor (well, right now, it's a bed - that seems to upset her a little less).
6. Leg unlocking (2 min) - she's turned on her back and, while pushing on her foot, one leg is brought up and out to the side, then the foot is released and the leg is brought to the middle and back down again. Then the other leg.
7. Originally we were given "naked baby in warm olive oil," but this was so not a hit with Daddy among other people that we are now ending this sequence with either a bath or a massage.

Second sequence - 5 things to be done in order, 3x a day. This starts off the same as the first sequence but is just for her arms and is to help make her more aware of them/use them better:

1. Tactile glove (1 min) - arms only.
2. Deep pressure (2 min) - arms only.
3. Grasp & release (1 min) - grasp and release different objects with different textures, temperatures, etc.
4. Alternate arm bounce (1 min)
5. Structured play with cause & effect toys

Third sequence - 3 things to be done in order, 3x a day. This works on her vestibular system and vision:

1. Trigeminal stimulation (1 min) - basically a head massage, starting from the back and ending up at her mouth.
2. Spin (1 min) - we spin with her in an office chair.
3. Tracking objects (2 min) - moving toys and lighted objects randomly at about an 18" distance. I wondered at first why we were supposed to spin her and then do this vision exercise, and then I read in an article about cortical vision impairment that some people believe that stimulating the vestibular system wakes up the other senses.

Fourth sequence - 3 more things, 3x a day. This is for her oral/motor skills:

1. Trigeminal stimulation (1 min)
2. Mouth stimulation (1 min) - using a sponge on a stick (they have a kind called "Toothettes" but for now we're using a bunch we got from one of her hospital stays called "DenTips"), rub around the inside of her mouth.
3. Bite & roll (1 min) - using a small piece of aquarium tubing, have her bite it on one side of her mouth, then roll it across her tongue to the other side and have her bite it again.

Then there are a few things that don't belong to any sequences:

• Baby CD - this is the one thing that we had to buy from them. It's a CD of classical and traditional music with various other sounds thrown in that's supposed to provide a full frequency range and help brain and auditory development. We're supposed to play it as background to other activities, or when we're not doing anything else with her.
• Slow motion log roll on an egg crate cushion - for her vestibular system and to improve her tactile sensation - 3 min, 3x a day
• Swing supine (on her back) with a focal point - swinging her side to side in a blanket or a hammock, for her vestibular system - 3 min, 3x a day
• Swing prone (on her stomach) - 1 min, 3x a day. We have tried this exactly ONCE so far. The combination of swinging AND being on her stomach just sent her through the roof.  I e-mailed Ellen and told her we felt we needed to work on those two things separately for a while...
• Pleoptics - this is a weird one and from what I could find out on the Web, I think maybe a little controversial as to whether it works (on the other hand, vision therapy in general seems to be controversial). In this one, we glued a penny to the middle of a flashlight lens and we shine it in one eye (making sure to stay with her pupils and from only an inch or two away) for three seconds. Then off for 10 seconds, then do the other eye. I tried this on myself to make sure we weren't hurting her too much and it seemed a bit uncomfortable, but not really painful. 2 min, 6x a day.
• Alphabet tape - I had to make a tape of me saying the alphabet and then words, like "B, buh, beads." Over and over. I was even loopier than usual by the time I finished. I just finally did this yesterday (we were having trouble with our tape player and I ended up having to borrow one) so I haven't gotten to find out yet how crazy listening to this every day is going to make me. This is just another thing to play when we're not doing anything else with her.
• Black and white patterns - show her those small black and white patterns like you often see on developmental toys, 1 min, 6x a day.
• Directional modeling - tell her and show her to do something that she can do easily (like "open your mouth") and then praise the heck out of her when she does it. 1 min, 6x a day.
• Watch TV - whatever she'll watch for as long as she'll watch it.

So there you have it. (I should add a disclaimer that this is just a program for Laurel to address her specific problems, and other kids should undoubtedly be doing other things.) We have yet to manage to get all 84 activities done on any given day (I'm consoled by the fact that most other NACD parents have said the same thing). It does take a lot of time - it works out to about 2 hours total for all the timed activities but there are also a number of untimed ones and also some set-up and transition time. And sometimes, some calm-down time. The first sequence in particular is not going over well. But we have been amazed at how quickly she has gotten better about the log roll and swinging supine. We're also encouraged that she seems to be responding a bit more to the deep pressure (at first it was hard to even find a level that would cause her to pull back), and she seems to be looking at things more (her OT noticed this, too). And after I introduced myself to the NACD listserve, I got a great, encouraging e-mail from someone else who has a daughter with a brain injury who had had infantile spasms, who's 7 years old, and been in the program for three years. She's been mainstreamed into kindergarten (with an aide), learned her alphabet upper and lowercase, can count to 10, interacted appropriately with the other kids and even has a boyfriend. :-) Obviously, she is still delayed (a couple of years in gross motor skills and speech as well), but has come a huge way from when the social worker brought them a list of "homes that will take children like yours." So, we'll keep plugging away at it!

Last night Laurel didn't cry at all during her "preparing to crawl" sequence, and she was moving her legs while we were moving her arms and moving her head herself, too. It was pretty easy to imagine that we might actually get her to crawl this way!

And this morning, she was having trouble sleeping (unfortunately for Bob, to whom I'd given the morning off) and she was rubbing her hand all over her face and into and out of her mouth. What's so cool about that is, since the beginning she has had as a feeding therapy goal that she would put her hands in her mouth, and I remember thinking, "Yeah, right, ain't gonna happen." Because at first she didn't bend that way. But now she does. :-)

Laurel gave me [Bob] a high-five yesterday!

But wait, there's more.

Rochelle walks in shortly after that and I'm still doing the light high-fives on her hand (i.e. resting by her head, with the "voom" noises) and I decided to see if she'd touch my hand again. Well, as I held out my hand, this time she really zoomed her hand out to touch mine - right at it. It was some of the fastest voluntary hand motions we've ever seen. And Rochelle was there to see it. I'm sure she'd never have believe me if I'd have just told her it had happened.

Poor Laurel, though. Mommy and daddy were so excited and cheering our praise that we scared her! She started crying a little - but we explained it was all okay and she only cried for a short bit. I think we just startled her with all of our excitement. It was pretty exciting.

Help! We're wondering if Laurel might have a UTI? She hasn't been peeing much today (although she did have a couple of rounds of diarrhea so we thought she might have eliminated some fluid that way) and she's been crying a lot. We thought it was maybe gas (this kid can have the most awful gas pains) or even that her butt was getting sore from the diarrhea (and we're not totally sure what's up with that, either). But now we're thinking it might be when she's peeing. She just finished a course of antibiotics Friday night, could that have brought something on? Thoughts and advice are appreciated! I'm thinking I might call the nurse hotline too...

We took Laurel to the doc this morning, but it was inconclusive. She peed a couple of times this morning (after I made the appt, of course) and DIDN'T scream and actually seemed to be in a pretty good mood. But she's still not peeing very much, so I'm still kind of worried. The doc didn't see any evidence of a yeast infection, her ears looked good and her tummy felt OK. She didn't want to catheterize her to get a urine sample unless Laurel went back to screaming when she peed. So she told us that she might just have a bit of a tummy bug (since she threw up twice and had diarrhea twice yesterday) and to keep an eye on her. Since Laurel mostly seemed fine this morning I ended up taking her to the babysitter with instructions to keep a watch on her diapers and to check to see if she'd just peed if she screamed.

Laurel's mostly feeling better but she did throw up a little this morning. She's wetting OK now, though, and she hasn't been screaming.

Nothing like having your hopes raised only to have them dashed again...

I can't seem to stop crying, but I have got to pull myself together and get to work...I've got a busy day ahead of me...

Thought you guys might like to hear how Laurel's program is going...

Program is going pretty well! Although most days we only get about half of it done. Even at that, though, I feel like we are seeing some progress. Her eyes seem like they work together a higher percentage of the time than they used to. Yesterday I was playing with her with a toy that's got three arms that make various noises when they're turned. If you hold one of the arms, you can sometimes get her to push one of the other arms [Jen...cnedaria...you know which toy this is! ;-)]. But yesterday after she did that with her right hand and got it turned as far as it would go, she reached over with her left hand and pushed the third arm to make it go again! She's never done anything like that before - two-handed play has always been one of those "yeah, right" goals on her IFSP (although, until a couple of months ago one-handed play was too...). Also yesterday, I had put her in a sitting position on the couch (which she is much more stable in than she used to be - she used to always thrust her legs out and slump within a short amount of time), and she actually pushed herself sideways (didn't fall, it was intentional), rolled to her tummy and even started to get her hands in an appropriate position to crawl. Then she thought better of the whole thing and started to go to sleep. But still!

Of course, it's hard to say how much is due to the program. But it's great in any case, and we're feeling hopeful!

Off topic - Calming vibes needed...doing an interview for the local news in 40 minutes...

We (speaking in the work "we" sense here) did a study of fecal coliform bacteria in a local creek this past fall/winter/spring. One of the things we discovered was that a small privately-owned sewage treatment plant was having questionable discharge (I could get really gross here, but I won't), and there was algae in the stream it discharged into that also indicated poorly treated sewage. When we tested for fecal coliform bacteria, though, we didn't find many, although we duly notified the Department of Environmental Quality about the whole thing, and they say they're on the case. Anyway, the local TV station got wind of it and now they want me to talk about it for the evening news. Ack. Please send "don't make a fool of yourself on local TV vibes..."

Agh! So I missed myself on the news last night! It wasn't on the earlier editions and we forgot to watch the 11 PM news. Actually, at 11:10 we realized we weren't watching it but figured they would have run the story by then anyway. Nope, turns out it was on about 11:15. Our babysitter saw it and said I was good. I saw the transcript on their website and it does look like they used one of my more lucid moments. ;-) I just came back home so I could set the VCR for the noon news - heck, at this point I think I'm going to make up an excuse, call into work and WATCH the noon news. I know I'm being silly, but this is the first time I've been on the news in more than a crowd shot! Besides, I'm having a crappy morning - the reason it's so late to begin with is that Laurel threw up in the car on the way to the babysitter's the first time - all over herself, the car seat, and the diaper bag. Two hours after the feeding (!) so it was really good and disgusting. Ugh. Half of me wants to take a mental health day, but the other half says wait until I have a full day.

It hit me on the way to work that I might have sounded like a bad mommy in my first post because obviously, I ended up taking Laurel to her babysitter after she threw up. I can't remember whether I've said this or not, but fact is, Laurel still occasionally throws up randomly. It got a little worse after her last button change for some reason, too, increasing from once every week or two to once or twice a week. Although this one was unusual in coming so long after the feeding, still, sometimes when she's taken a nap after the feeding (as she did this morning) her stomach doesn't empty as fast. Otherwise, she'd been in a pretty good mood this morning so I had no reason to believe it was anything other than another random barf.

Can I vent a little, though? Laurel is doing well in many ways right now so I hate to even complain. But I can't tell you how tired I am of random barf and also, she has gone back to having what look like panic attacks (flinging her arms out and screaming) on her back and at Hershey, she kept having them in her stroller. She even has them sometimes when we're holding her, although they seem to be worse when we're not. We've discussed this with her doctor a number of times but no real insight. We've worried some about seizures, but mostly we don't think so because when she has them when we're holding her or near her we can stop them if we can quickly get her arms to center. We wonder about gas pain. We wonder about teething pain. We wonder about vertigo (especially with the ones on her back). She has actually gotten worse about being on her back since going on the NACD program - we are going to talk to them about that. Maybe it will turn out to be one of those "it'll get worse but then it'll get better" things. I hope. I am so sick and tired of wondering and worrying, and I just don't know what to do. I feel like we can hardly put her down anymore.

Well, having said all that, it turns out I should NOT have taken Laurel to the babysitter after all. I guess it was more than a random barf, because the babysitter said she threw up again. So I'm leaving to go get her.

And one more thing to make my day - I'm on this program through my office that, if I go to the gym 8 times in a month, they pay for $30 of my membership. I had to go tonight to make the 8 times for this month. But Bob's in West Virginia, and Laurel's clearly not fit to go to the gym's daycare. So I guess we'll have to eat the $30.

Oh yeah, and I'm going to have to miss my allergy shot, and I've been a mess lately. And the allergist is on vacation next week (he only gives shots on Wednesdays).

OK, I'm done whining now, sorry about that...

MAN did I call that one wrong - got Laurel home and found she was running a fever of 101.7. I gave her some Tylenol, fed her some Pedialyte and called the doc's office just to make sure I wasn't missing anything (it's been a long time since she's run that much of a fever). But they said as long as the Tylenol knocked her fever down, it was OK. I haven't checked yet - she fell asleep and I haven't the heart to wake her. But I will check as soon as she's up...

Meanwhile Bob, sweet guy that he is, is coming home early from West VA (he normally would have gotten home around 9:30, which is when the gym closes). Assuming her temp's down and we're not looking at a trip to the ER, I'll probably be able to make a quick run to the gym and save us the $30.

Please send a few healing vibes Laurel's way!