Archive for June, 2007

VitalStim therapy

Thursday, June 28th, 2007

Once again, I didn’t go to one of Maria’s appointments and it was bad news. That seems to happen a lot when I don’t go.

The feeding therapist wants to start Maria on VitalStim therapy. (Incidentally, that’s a really crappy website) to help her dysphagia (her trouble swallowing). It involves mild electrical stimulation of her throat muscles to build them up and get them working properly.

I understand the use of electrical stimulation on muscles and I’m less freaked out about that part than Cathy is. The real problem is that they want to do it 4 times a week for 5 weeks. They can’t schedule us until November and that means we would be juggling these 4 appointments, her 5 therapy appointments, preschool, plus the usual agenda of doctor visits and other miscellania like sleeping and eating. If it is at the children’s hospital, that’s an hour and a half of driving each day. They might be able to get us into a closer facility, but it’s still a heck of a lot. The nanny doesn’t drive on the highway and Manolis doesn’t have a good car, so either me or Cathy would have to do the driving.

It has a high success rate. The feeding therapist or possibly one of her colleagues has followed 50 kids and 48 of them have had improvement in swallowing, so that’s 96%. The website claims 98.4% success.

With 5 months to stew over it, maybe Maria will get scared suddenly start drinking better. The threat of the g-tube helped two years ago so maybe that’s all the incentive she needs. We still suspect she only PRETENDS she can’t understand us 😉

Maria has had so much trouble with the honey thickness milk that she isn’t getting enough fluid every day. Cathy has cut the thickness back a bit and she’s doing better. The feeding therapist says we need to stay on honey for a few days, but it’s just impossible to get her to drink enough. Even the lower thickness Cathy is giving her is still WAY thicker than what she used to get so we will continue to do that despite the therapist’s advice.

Enjoying her mini-vacation

Tuesday, June 26th, 2007

We took Maria out swimming today. It’s been a long time since I’ve seen her in the water and she has improved so much. We put a cylindrical float under the back of her neck and she floated there unassisted, kicking her legs now and then. She was moving slowly and I wasn’t sure if it was her leg movement or a current in the water. A couple of times she flapped her arms and got a good burst of movement.

In one part of the pool there was a waterfall. I took her toward it, on her tummy now. She seemed both excited and scared as we got closer. She’d strain her head to the side and I’d turn her away from it. Then she’d strain her head again and I’d turn her back. She was grinning all the time. We got fairly close but the water was pretty rough and she kept getting splashed so it was obviously a little too much.

She continued to have a low-grade fever yesterday and Cathy was going to call the doctor today. Then her fever broke yesterday evening and she’s been in much higher spirits today. She’s still sleeping a bit more than usual and still not eating as much as she should. We noticed her ribs are getting a bit pronounced so we obviously need to step up the calories again.

We’ve notice that she’s doing her gagging thing MUCH less often over the past 4-5 days. The few times she does do it, usually it’s the “I’m about to throw up” gagging rather than the “choking and lips turning blue” gagging. That’s progress of a sort. She’s been vomiting up air a lot lately and we’re not sure why that’s suddenly happening. Even though she’s feeling better, she obviously still has an upset tummy.

She’s NOT happy about going to thicker milk. She has to suck a lot harder to get it and she drinks very slowly, often pushing the bottle away over and over. It occurred to us that the straw cup may be very hard for her. We use special fast-flow nipples on the bottles but we don’t have something like that with the straw. We haven’t tried it since the swallow test, what with all the hoopla and her feeling poorly.

She’ll be at the resort two more nights. Then on Thursday she sees the feeding therapist and the Qi Gong guy. We increased the feeding therapy from 1/month to 2/month in preparation for the swallow study. We had planned to go back to 1/month because it is at the same time as her music therapy, and that has brought out so much in her. Plus it’s the only therapy that isn’t home-based and it’s a lengthy drive. However after this, we suspect the feeding therapist will probably want to stay on 2/month or even more often.

Of course, when she starts going to preschool in the morning (in less than 7 weeks!) all the therapies except PT will have to be rescheduled anyhow.

Maria takes a step back

Monday, June 25th, 2007

Maria had her swallow study this morning and it didn’t go as well as we would have liked. It didn’t help that she had been sick all weekend, didn’t sleep well last night, is upset over her home being torn up, etc.

The scale of liquid thickness from thinnest to thickest is very thin (water), thin (regular milk), thick, nectar, honey, spoon, pudding. Because of her swallowing trouble Maria has been on thickness as high as pudding, although that didn’t last because it’s pretty much impossible to actually get spoonfuls of “pudding” thickness (which is really more like mucus thickness). For at least a year, Maria has officially been on nectar thickness, though we mix it closer to thick.

On this latest swallow study, they tried her on nectar and for the first time in many studies she aspirated, meaning some of the liquid went down her windpipe. More important, she didn’t choke or cough so it was “silent aspiration”. That means if she does aspirate we have no way of knowing – at least until she develops pneumonia and ends up in the hospital.

They tried her on honey thickness and she did fine so *sigh* the recommendation is to increase thickness back to honey for a while. We will work with the feeding therapist on nectar-consistency trials in hopes of getting her back down, but in the meantime we need the thicker consistency to be safe.

One thing the therapist giving the test noted was that it took her a long time to react to the thinner liquid in her mouth, which is why it was able to go down her throat. It’s like she didn’t feel it. The thicker liquid gives a stronger tactile signal so she responds to it. One thing we will work with is using temperature or strong tastes (eg lemonade, cranberry juice) to help trigger her response to thinner liquids.

The explanations of why she needs it and how she doesn’t react to the thinner liquid made sense but we are disappointed. We don’t like how badly the thickener constipates her. We are also concerned that there are no long term studies on the effects of large amounts of xanthan gum (the thickener) over an extended period. The previous generation of thickeners was corn starch based and, since corn starch turns into sugar in the body, they were effectively giving these kids massive amounts of sugar which led to increased incidence of diabetes later in life. Who knows what this new stuff will do?

We are waiting for the PT now then we are off to the resort. Cathy is hoping the kitchen will be done by the time she gets back but they are behind schedule. Yes, I know. I’m shocked – shocked! – that a contractor could be behind schedule.

In boring technical news, I upgraded the blog to WordPress 2.2.1 over the weekend. That’s more a note to myself than anything else.

Maria’s 3rd Birthday!

Sunday, June 24th, 2007

Today Maria is 3 years old! The day started out ok, she woke up smiling, as usual. Had a good night’s sleep in her own room, gave me a hug, held her own bottle, ate grits and blueberries for breakfast–so much better than last year!

The kitchen is all torn up and the house is in disarray (remodeling the kitchen), we had to stick around until the new range was delivered, so it was pretty warm by the time we got going. We went to the Great Indoors to buy a kitchen faucet. I, of course, forgot where the store was so we drove around for quite some time until I found it. We went to First Watch for lunch. Mine was good, but Maria didn’t eat much. A very friendly lady, who was about 20 feet away, kept telling me how cute Maria is. At one point she asked me if Maria is ok. Hmmm, is she ok. What the hell does that mean? I’m not one to miss an opportunity to talk, but I wasn’t about to shout “hydrocephalus, cortical visual impairment, auditory neuropathy, resulting in severe global delays” to a perfect stranger in a restaurant. So I replied, well she has lots of issues, but yea, she’s very ok. She’s perfect!

Off to The Great Indoors – fantastic store!! I got a lovely faucet and drain hardware thingies–we’re going to have a dark granite sink, dark gray faucet, with black drain hardware thingies–sure hope I don’t regret it. He told me they won’t show the dirt. We’ll see… By that time, Maria seemed to be a little stressed. But, no, I still had to go to Petsmart to get birdfood. Can’t let the birds starve, now, can I? By this time, Maria was doing her usual stress reactions: heavy sighs, stiff moving legs, tight mouth with her tongue sticking out a bit, eyes rolled up; but just to make things interesting, it also appeared that her arms were shaking a bit. I took her to Sue’s house because we’d talked about swimming, and I wasn’t sure that’d be a good idea. Sue looked at her and thought she was having a seizure. Great!

We went home, Maria had a 30-min nap, and seemed a lot better. She ate and we went back to Sue’s for some swimming. Maria was stiff for quite a while, but she eventually relaxed, smiled, and enjoyed the pool. I was going to take her to get a cupcake, but it was almost 8pm, so we just went home and she fell asleep before I gave her her milk. 3rd birthday and no party, instead of cake and ice cream, she had spinach and parsnips and pears and blueberries with grits (hmmm, similar stuff as what I fed her last year). BUT, we’re going to celebrate her and her cousin, Amelia’s, birthdays (even though Amelia won’t be there), along with a late Father’s Day and early Ida’s birthday, in New Mexico. Our cousin (technically our cousin’s husband) died suddenly, so we’ll probably have a Memorial Service to attend also. It’ll be a busy 3 days!!

It’s the day after Maria’s birthday; she woke up boiling hot, 102.5 temp (after stripping her down). Her lower legs were red, like a heat rash, after taking off her ankle-foot orthotics (UFOs as her dad calls them). All she had on was light jammies and a sheet, so I may have to keep the house cooler at night to compensate for the hot bulky UFOs. I gave her Tylenol and her fever came down a bit; she’s sleeping now. I tried to give her cold milk. hahaha. Not even a sip. Then I warmed it up to about room temp. Again, ha. We’re going to go stay at a nice hotel (rates come way down in summer because really who would come here to vacation in the summer…) much of next week because of the kitchen, hopefully she’ll enjoy the swimming. She’s not real happy with the chaos of the kitchen project.

She’s 3 today

Saturday, June 23rd, 2007

Maria is probably going to get a new neurologist, preferably one who a) doesn’t think Maria’s having a seizure every time she takes a breath and b) doesn’t think that poking a hole in Maria’s throat is a reasonable response to her gagging thing. To be fair her current neuro is conservative about putting Maria on medication, but she’s just too blunt and negative. The fact that she didn’t even remember Maria at her last visit is the sign of a doctor who doesn’t really care about her patients.

We continue to wonder about the gagging problem. Yet another new theory is that it’s allergy related. I’ve always felt it’s somehow related to her nose and sinus. She rubs her nose a lot and nearly sneezes. She pushes the roof of her mouth and squints her eyes sometimes which makes me think she’s got a sinus headache. Claritin does nothing for her so we are going to try some new antihistamines and see if that makes a difference.

Progress is slow on her Swifty stroller. There is an appointment in late July to go try one and if we like it then they will order the real one. It’s probable that she won’t have it in time for school. The people at the medical equipment provider have been basically stupid, lazy, and rude so far. We have to be nice because we are going to need a lot from them. For example, once Maria outgrows size 5 diapers, we can get free size 6 diapers there.

I took Maria to one of the mall play areas the other day. I figured we’d sit in the seats outside the play area and listen to the kids. Unfortunately, this one had the seats for grownups INSIDE the play area. The kids were, of course, all shrieking at the top of their lungs and running by at top speed just inches away. Maria went back and forth between being interested and being overwhelmed. One woman brought her 4-year-old daughter over and told me how beautiful Maria was. Maria was a little unsure about the other girl for a few minutes, then she reached out and started petting her foot.

Just a little over 7 weeks until she starts school.

Oh, and I just realized – Happy Birthday, Maria!

Happy Father’s Day!

Monday, June 18th, 2007

Manolis’ 3rd full-fledged Father’s Day (Maria was still in my tummy for his first Father’s Day), and he wasn’t with his baby. We called him, of course, and they chatted–well, Manolis talked and Maria licked the phone and pushed buttons. Maria and I did the same for Father’s Day that we did for Mother’s Day–went shopping. I think we hung out at Barnes & Noble for Mom’s Day; for Dad’s day we bought her some leopard sheets and a very soft blanket. She’s growing out of her baby blankets and the blanket I’ve been using for her is a dry clean only one–pretty silly for a baby who likes to vomit periodically! So now she’s really stylin! And actually, she’s been sleeping better. She kicks a lot at night and often kicks the covers off and gets cold, so now she’s staying toasty warm on these cool (air-conditioned) Phoenix summer nights…

Maria & I went to the neurologist today. Pediatric neurologists are notoriously negative, from what I hear, and ours is no exception. I didn’t “make” Andy come with us, and the appointments seem to go a bit rougher when he’s not there. She (the doc) had an intern with her and she was telling him Maria was born with a Grade 4 hemorrhage (Andy & I agreed that that was news to us); she talked about all of Maria’s problems and issues (quite blunt, wouldn’t you say?); suggested the option of Maria getting a trachaeotomy (to protect her lungs from her latest choking spells); oh yea, and said at two different times in two different ways that Maria could die at any moment from choking to death. Yes, it was a lovely appointment. She also thought Maria seemed out of it (she was tired), and kept clapping near Maria’s face to see if she’d react, and kept poking her. Yes, literally poking her in the arms, the face, the legs, to see what she’d do, I guess. She was not at all current with Maria or what’s been going on with her the last 3 years. It was a bit irritating.

I suppose one bit of good news is that Maria had an episode (wide open mouth, eyes rolled back, gasping for air) while undergoing the EEG a few weeks back, and there were no “epileptiform discharges noted with this event”. However, the report does say “this EEG demonstrates moderate to severe slow background mainly in the 4-5 cycles/sec with the left hemisphere being mildly slower when compared to the right.” Sounds kinda serious to me, but according to the report, “The EKG monitor was unremarkable” and “There were no electrographic seizures captured.” yippee. Makes me want to drink to celebrate, she said wryly. And, of course, the neurologist thought Maria had a seizure during our appointment (Maria clenched her fists and looked intense. We think she’s being an almost 3 year old who wants to walk, talk, run, play, and can’t so she gets frustrated.)

The neurologist wants us to see a pulmonologist for Maria’s episodes, which is ok. She also wants Maria to spend 24 hours in the PEMU (Pediatric Epilepsy Monitoring Unit), a new unit at Phoenix Children’s Hospital, which is also ok. It’s not such a bad idea to have her hooked up to see if they can figure out what’s causing her episodes–the scariest part is when her lips turn blue (Maria’s, not the neurologist’s), which she did for the doc today. But a trachaeotomy? I don’t think so!

So since I’m not much of a drinker, after the appointment, I went to a bakery and bought a bunch of small cakes and other sweet treats. (THAT’ll show ’em!). Wednesday the construction (destruction?) begins in my kitchen. Maria’s birthday is Saturday, not sure what we’ll do, since our place won’t be in any shape to entertain or bake. I’ve been trying to find a place that serves cake and beer, no luck so far…

Maria’s Individualized Education Plan

Monday, June 11th, 2007

We had our meeting with the school today to draft Maria’s IEP. We were pretty happy with how things went. They seem in tune with what she needs and how to address her issues and balance them with what the other kids need. For example, they want her in the morning class because the afternoon class already has a kid with multiple needs so it would be hard to give both of them the attention they require.

Cathy brought up the possibility of a private aide for Maria and they were resistant to the idea. They were nice about it and brought up a number of valid reasons why a private aide might actually make things harder for Maria. We agreed to set aside the idea for now and see how they handle her. We were relieved to hear the student ratio isn’t as bad as we thought. In theory they could have 17 kids (12 special, 5 typical) in a class with a teacher and two aides, so nearly a 6:1 ratio. Maria’s class should actually have only about 8 students and there is a therapist there just about every day (different therapists on different days) so that gives a ratio of 8 kids to 4 adults, which is more acceptable. They realize Maria will require more attention than anyone else in the class and are prepared for that.

Like we’ve said before, it’s almost like they teach kids for a living!

Her first word?

Sunday, June 10th, 2007

I’ve realized that recently we haven’t been working on signing with Maria as much as we should. Now that she is seeing better, it would be a good time to push some of the simple signs. So one night while feeding her chocolate pudding, which I figured would be a great motivator, I started working on “more” with her. I’d do it, then move her hands, then give her a bite. After 3-4 bites, I started waiting for her to do it…and she did! Every bite she’d lift her hands off the tray and bring them together.

I mentioned this to Cathy, and she said the OT had observed the same thing just a couple of days before. She was working with Maria, then she and Cathy started talking and stopped paying attention to Maria for a couple of minutes. She said Maria very deliberately brought her hands up and signed “more” to get the OT to continue.

I tried it again the following night, and it was less obvious that she was doing it. The problem with using food as a motivator is that if she doesn’t sign, what do we do – starve her? Still, it would be good to incorporate the sign in her daily activities. Any time we are doing something she likes, stop and get her to sign “more” before we continue.

We’ve been trying to give Maria more finger foods like pieces of sweet potato to increase her independence. It’s tricky finding something that is firm enough not to be mushed in her grip, dry enough not to slip out of her hands, but with the calories and nutrition that make it worth it for her to bother. We have to give her small pieces since she is still inconsistant with chewing. Pretty much anything we give her that doesn’t dissolve naturally we have to assume will be swallowed whole. Like anything, the more we do it the better she gets at it.

She got her new AFOs this week. I’ll have to get a picture at some point. These are designed to reduce the chance she can hurt herself by squirming her foot around like she did before. We’ll have to ease into them again, since we have used the old ones almost not at all for the past couple of months. We are headed back to the goal of having them on all night and then for an hour or three during the day. I think it will be easier to find time to have them on during the day since I, at least, don’t lay her down on the floor as much since we have to take her glasses off when we do. I’m curious if it will stabilize her more since she’s still trying very hard to figure out this walking thing.

Tomorrow is Maria’s IEP meeting. The nanny is supposed to get back today, which will be a big relief. Manolis is still miserable without Maria and has sworn he is never going back to Greece alone after this trip.

Maria’s vision therapist

Tuesday, June 5th, 2007

Maria saw the vision therapist yesterday, which was the first time they have seen each other since Maria got her new glasses. The therapist was just shocked by how much more Maria uses her vision than before. I noticed that when she’s not wearing her glasses, she uses her vision much less than before. When she is wearing them, she often just sits there and pointedly looks around. Sometimes she will look at something, then tilt her head so she’s looking at it under the lenses, then tilt her head back to see it through the lenses. Obviously the glasses are working.

Sadly, we are losing the vision therapist soon. She is an early interventionist, meaning she handles kids only up to 3 years old. She’ll see Maria twice more, then bye-bye. I’m not sure what happens after that because Maria will still need home vision therapy.