Maria Rose

Finally I’ve added new pictures of Maria. Because it’s been so long (8 months!) I’ve divided them up into several albums:

• July 2007 has pictures of her 3rd birthday and her stay in the PEMU
• Aug-Oct 2007 shows her at school and Halloween
• Nov-Dec 2007 is all about her Christmas travels
• Jan-Feb 2008 shows her getting Vitalstim and having a Valentine’s Day party

Pictures of hippotherapy and her elephant ride will be in the next update which will be much sooner. I also have several videos I need to edit down before posting.

Cathy and I have been concerned that Maria’s swallowing has regressed in the last couple of weeks. The Vitalstim therapist agreed - she says Maria is doing worse than she was before getting any Vitalstim at all.

It’s probably because she was sick. Not only does the phlegm mess things up, but her throat tissues were probably swollen and that would have confused her swallow reflex.

So the swallow study that was supposed to happen tomorrow has been put off until May. We are going to take it easy on her and let her get used to swallowing simple foods rather than challenging her with more complex textures. She will get four more Vitalstim in the four days leading up to it and we hope that will lead to a better result.

Last week I went to an Arizona Senate hearing on not enough therapists in Arizona. This week I’m looking for new occupational and speech therapists…

Today Maria’s home and school physical therapists met at school. The school PT still is strongly resisting changing Maria’s stander to prone. I’ve asked her to, the home PT asked her to, I told her a neurodevelopmental pediatrician suggested it, and she still doesn’t want to do it because she thinks it’s fine as is. (Lazy? stubborn? you decide)

We put Maria in the school’s Rifton walker and in the Miniwalk that Barb (home PT) had in her car. She did a LOT better in the Miniwalk (yes, that’s the one that the insurance company denied; I wrote a 6-page appeal letter in response). Home PT suggested nicely 3 or 4 times that school walker was too low for Maria. School PT said it depends on how Maria’s doing, usually it fits her fine. (lazy? stubborn? something else?).

I said the chair didn’t put her at a very good position to the table. Home PT said, hmmm looks like the arms can adjust down, and let’s put the back up straighter. School PT seemed like she didn’t even know the chair adjusted. (can you guess the adjectives I’d use now?)

As you may have guessed, our little get together was a bit awkward, a bit uncomfortable, certainly not a dialogue among colleagues trying to discuss ways to make things better for Maria. Too bad I can’t fire her… Instead, I copied the report from the neurodevelopmental pediatrician and I will highlight the part about changing the stander to prone. I even took pictures of our stander at home (same type as school stander) so she could see how it looks and where the settings are. I’m thinking of having a little chat with the teacher.

We’re looking for a new speech therapist because, as we’ve mentioned, our previous one is now meeting with other therapists instead of kids. We’re looking for a new occupational therapist (fine motor skills) because our current one is not meshing well with Maria. She constantly fights with Maria for the entire session, every session–keep your thumbs out of your mouth, don’t put the toys in your mouth (typical, expected, and encouraged behavior for a visually impaired toddler). It’s fairly obvious that Maria’s not as comfortable with her as with some others, like, say, the new horse therapist… It almost feels like torture to watch. We’ve been quite lucky with therapists, I hope our luck holds. I almost found a new OT, I know she would have said yes if she’d met Maria, but on the phone it’s easier to say no.

Maria seemed to have fun at the Renaissance Festival. Since it was Easter, the place was less crowded and she didn’t seem to be bothered by all the activity.

I took her on an elephant ride since Cathy was too chicken to take her They also had camels and a llama but the elephant was the only one big enough for me to hold her in front of me. The ride was short, just a quick walk around the yard, and it was hard to tell what she thought about it or if she even noticed it.

We took her to some music performances there that she seemed to enjoy. There was one in particular called Tartanic (bagpipes and drums) that she just loved. I clapped her hands in time to the music and she had this huge grin while I was doing it. I was annoyed that out of their 30 minute show they spent 20 minutes (no joke) hawking their merchandise rather than playing music. However their website says this was their farewell performance so I supposed I understand. It’s still disappointing that they didn’t play more, especially because Maria was really into it.

There wasn’t any food that she could eat. I tried giving her some Italian ice (which would upset her feeding therapist since it’s unthickened liquid) and Cathy gave her a couple bites of fish, but mostly she just ate what we brought for her (lobster pâté no less). Someday she can gnaw on her own turkey leg, but not yet.

She also enjoyed rolling around in the grass, something she doesn’t get much of a chance to do in Phoenix. It was very windy at times and the wind always freaks her out but she got used to it after a while.

I’m sure she was exhausted by the time we got home eight hours later since she had only a 15-minute nap the whole day. She may have gotten a bit too much sun even though we slathered on the sunscreen twice.

This week, her regular PT and the school PT are going to meet to discuss Maria’s therapies. Maria has two more Vitalstim treatments Tuesday and Wednesday, then another barium swallow on Thursday. We aren’t expecting good results from that but we are always willing to be pleasantly surprised.

I know we haven’t updated pictures in a LONG time but I have a ton that I need to make one more pass through before posting them later this week.

Maria’s yeast infection was noticeably better between when I put her medicine on at noon and when I put it on at 8 pm, so that’s encouraging. It looks really painful.

All of this chest congestion and yeast infection stuff is affecting her in other ways. She’s not using her vision as well as before and spends a lot of time with her eyes rolled up in her head. She also went from having 1-2 seizures a week to 1-2 per day. We are hoping that both will clear up as she starts feeling better.

Tomorrow we are going to the Renaissance Festival. Cathy and I went three years ago and I can’t remember if we had Maria. I would swear it was just the two of us and we left Maria with Joe & Ann. However I have a memory of this one character, Twig the Fairy, playing her double flute for Maria. I think Maria will enjoy it, although she’s going to get overwhelmed so we’ll have to give her some breaks.

Yesterday Maria went to hippotherapy (physical therapy with a horse) for the first time (which is amazing considering we were waiting for her new state coordinator to send in the approval, and he actually did it with only 3 or 4 phone calls to him and his supervisor!). The therapist, Marcia, fell in love with Maria before we even got her out of the car. And before she got on the horse, the therapist said she was going to try and get Maria into a Friday 9am or 10am slot rather than the noon Wednesday slot that she’s got now. I tell you, Maria has magical powers…

Marcia worked with Maria for a little while on a padded table and asked us (Sue & I) some questions about her, then she put a waist belt and a helmet on Maria and put her on a cute little black shetland pony. I think her (his?) name is Blackberry?? They put a Boppy pillow around her front to lean on; one guy led the pony while the therapist stood on one side and a volunteer stood on Maria’s other side to keep her upright. The family has to stay outside the arena and not interact with the child (children often act up around the family). They walked around the arena several times; Maria was doing really well sitting up. I think she was on the horse for 20 minutes or so, which is a long time for the 1st time. All of a sudden, you could tell she was tired because she got a bit more floppy, so they came in.

They told me that the brains of people who don’t walk can wire themselves to learn how to walk just by riding on a horse, because the horse has the forward, up&down, and swivel movements of a person walking. After the ride, Marcia held onto Maria and Maria took about 20 steps–it was amazing!! She’s been doing really well lately with walking; she took those few steps with Andy to get baby Elmo, and she took several steps (6 in a row once) with Barb (home physical therapist) this week. I’m real excited about what this therapy could do for her; which is a good thing, since Marcia told us after we got there, that oh by the way, you have to pay $30 each time for horse rental that the insurance won’t pay. It’ll be worth it if it helps her.

The bad part is that I think the horse riding made Maria’s diaper rash worse, so I took her to the doc today and it turns out it’s a yeast infection (wish someone told me that a week or two ago!!), so he gave us a prescription for Nystatin cream, which is only 83 cents/tube. Good thing, since Maria grabbed it and squeezed out about 1/4 of it the 1st time I used it. It was actually pretty darn funny! I sure hope it helps because she looks really bad. I’d take a picture of it, but I’d be afraid of getting arrested for having kiddie porn.

Maria has been obsessed with chests lately. Everyone she comes in contact with, male or female, she pulls open their shirt at the neck and peers in, usually reaching in to feel around. It’s very cute.

Cathy was gone all week at a class and Maria was definitely not happy about it. When I had her Thursday, she spent the whole day in her double-fisted-thumb-suck mode. Cathy got home late Thursday (actually very early Friday) and Maria was very happy to see her and is all smiles now. It’s great when we see such clear signs that she knows what’s going on around her.

We got the report from the audiologist in San Diego and I noted a couple of things Cathy didn’t mention in her other post. They “strongly” disagreed with the conclusions that the audiologists in Phoenix had reached. They also said her hearing loss is in the mild-moderate range rather than the severe-profound, there is no neuropathy, hearing aids and a cochlear implant would be no help, and her hearing profile seems typical for hydrocephalus.

It’s all fairly encouraging. We are now trying to find a speech therapist for Maria but everyone is on the east side, which is a common story for everything in Phoenix. We’d prefer finding someone who will make home visits or who is at least close since the alternative is three hours per session - an hour drive over, an hour in session, and an hour drive back.

Maria’s chest stuff is still there but not as bad as before. It’s just that residual phlegm that hangs on after a cold. She took her last dose of antibiotic today and we are glad. She’s had diarrhea from that and as a result REALLY terrible diaper rash. That should all clear up now.

Cathy’s still trying to get the hippotherapy approved and the clock is ticking. Because they do it outside, they stop in May and don’t resume until November. We’d like to get a few sessions in before summer but it’s mired in the usual bureaucracy.

Next week Maria has spring break (no school) and no major appointments. The week after she has her last two Vitalstim sessions then her next swallow study. Things should be quiet for a while (knock wood).

The doctor finally called Friday afternoon (or maybe Cathy called him) and said it’s not pneumonia. We are continuing the breathing treatments and antibiotics and she seems to be doing better.

Friday was her last day with her speech therapist. He has to move into an administrative position because of this new state program which is going to offer more services…by taking people out of service to sit on committees. Typical government “huh?” planning.

Anyhow, we aren’t completely devastated by this. He was a really nice guy and we liked him, but he just wasn’t effective with Maria. I think he works better with kids who can give him some back and forth. He’s probably great with older kids, but I think Maria was too much for him. He of course absolutely adored Maria - to the point it was borderline creepy

We hope to find a speech therapist who has experience with hearing impaired kids, which he agreed was a great idea. However there is a huge shortage of speech therapists in Phoenix - even more so now that some of them have to sit on silly committees.

Maria did something pretty exciting today. I had her on the floor and she wanted to stand. I helped her to her feet and she started to take a step forward. She took three very deliberate steps (I was supporting her of course) and stretched out her arms toward the TV. I wondered what she wanted there since she hasn’t ever shown much interest in TV, but then she abruptly squatted down and picked up her Elmo doll which was in front of the TV! I really think she deliberately went over to get it.

Maria isn’t feeling well this week. She got a bad cough, bad enough that Cathy called the nurse line Wednesday. They said to give her breathing treatments every four hours and if Maria hadn’t improved by morning to call the doctor.

The breathing treatments helped a bit but not enough. Plus since the albuterol is a stimulant, Maria got very wired and shaky. She didn’t sleep at all Wednesday night. Cathy took her to the doctor on Thursday. He listened to her chest for about a second and said it was bad. He wanted a blood test and chest x-rays. As usual, the idiot nurse tortured Maria for about 20 minutes trying to get blood out of her while Maria struggled and struggled. After that, Cathy took her for a chest x-ray. That was tough because they were not set up for a kid who can’t sit up on her own.

The concern in all this is pneumonia, particularly aspiration pneumonia, which would require hospitalization. They took the x-rays and everyone was concerned over how Maria was panting for breath and looked generally awful. Cathy assumed that they would take the x-ray to the radiologist immediately. Nope. They sent her home. She waited and waited and finally called - the doctor of course had gone home for the day but might get around to looking at it the next day (today). It’s 10 am now and still no call. I guess it’s good that Maria hasn’t suffocated in her own phlegm yet. We still don’t know if Maria is going to spend the weekend in the hospital or not.

In other news, we may have finally found an easy way to give medicine to a toddler. Cathy found something called ReliaDose. It’s a bottle with a syringe imbedded in it so we can trickle in the medicine as she drinks. She hasn’t fought it or choked on the medicine once so far.

The only other event this week is that I’ve removed the ability to add comments to Maria’s pictures. There were only a handful of real comments anyhow…but there were also more than 17,000 spam comments. It’s ridiculous that I hadn’t noticed sooner, but that shows how seldom we look. If people really want to comment, they can do so here at the blog which has spam protection.

We went to see a new audiologist in San Diego, finally. Maria’s last ABR (sedated hearing test) was in July 2007. At that time our local audiologist said we needed to decide within a month or two whether to get Maria a cochlear implant; she was in favor of it. I wanted a second opinion. She was supposed to send me info on a recommended expert in auditory neuropathy (but not implants). She never sent it to me, so I got another expert’s name (in both auditory neuropathy and cochlear implants) from an audiologist I met at a cochlear implant talk. I called him, sent him Maria’s test results, he said he didn’t think she had auditory neuropathy nor did he think she has severe to profound hearing loss. He gave me the name of a doc here in Phoenix. I called him and he said the test results look typical for a kid with hydrocephalus and he thought her hearing looked to be in the normal range. When we discussed seeing him since he’s local, he said he mostly sees older kids, so he recommended the SD audiologist. We were supposed to see her in January, but Maria got really sick, so we rescheduled for late February.

Fast forward to today. The new audiologist asked us a few questions to fill in the gaps she had (she’d written up a chronology before our appt), said this was a very complicated case, she hadn’t seen anything similar–you know, the usual story we hear about our little Miss Maria. She spread all the papers out on the floor during the appt to see the whole story and in conclusion, she said: I don’t think she’d benefit from a cochlear implant. I don’t think she has auditory neuropathy. I don’t think we’ll learn anything new from doing additional ABRs. I don’t think she has severe to profound hearing loss. I don’t think she’d benefit from wearing the hearing aids again. The waves (test results) look typical of a kid with hydrocephalus. The vision and motor delays and cognitive issues and overall developmental delays add to the complication of what’s really going on and why she doesn’t talk. What may have happened is the fluid-filled ventricles could have been sitting on the brain stem and/or other parts of the brain, which could have killed those brain cells and when the cells are dead, they don’t grow back, so that could have caused some damage to the auditory nerve (? I might be making that last part up).

So what does this mean? I’m not sure. She thinks Maria could be having trouble interpreting the sounds, but isn’t that auditory neuropathy? What is a “typical wave for someone with hydrocephalus”? What can we do?

She called in a speech therapist, who was very good. She said lots of great things, things I’d heard before, but not explained like she explained them. Both of them said we should try to be more consistent about signing. I said I feel like I’ve signed “milk” 100,000 times and she still doesn’t get it. The audiologist said, maybe she’ll get it when you do it the 100,001st time. We need to try and sign in her hand or with her hands, something tactile since her vision isn’t always working. Although sometimes we just need to feed her and get it over with, try to think of meal times as communication times. Sign the first few bites, every time, consistently, all of us. Every time she makes a sound, we should mimic her. We should provide her with choices (we do that, and she does very well with it). Say bababa and other early sounds to her a lot, move her lips while we do it. Have her play with cause-effect toys so she can see she can affect her environment. Toys that make noise, move, and light up are good (we’re covered there, she has LOTS of those singing, dancing toys). Make a big deal when she does something, like activates a toy, makes a sound, does a sign, makes a choice, so she can see how good she’s doing. To some extent, I /we need to incorporate these things as habits, and stop thinking of them as just another damn thing we have to do in addition to all the other damn things. They also think we should find a speech therapist who’s experienced with hearing impaired children. She thinks it should be easier to find a speech therapist since Maria has a hearing issue (compared to a kid w/o that complication). Maria’s current speech therapist is leaving us to meet with other therapists–it’s the new Arizona’s Early Intervention Program (for kids age 0-3) where the therapists meet with each other, not with the kids. Ridiculous and Thank God Maria’s not under 3 so she doesn’t have to participate in the madness. So, it’ll be a good opportunity to find someone more suited to her issues. All-in-all, it was a good doctor’s visit. I’m glad we made the trip. I need to find someone (audiologist) Maria can see locally, maybe not her current one. I have some ideas how to do that. In hindsight, I wish I’d asked Rosanne to take notes during the appointment. We got lots of good info, but it was a lot to take in and remember… I did ask the audiologists to write us a detailed report to help me justify whatever I need to justify.

Maria’s OT (occupational therapist) hasn’t seen her in more than a month and she was very excited to see all the improvements Maria has made (reaching, looking, fine motor skills). Rosanne noticed that Maria’s eating a lot better, she didn’t have a single seizure the whole weekend, she only stuck her fingers down her throat a couple times (when she was being ignored), but didn’t succeed in puking. We did see Amelia (Maria’s cousin). She talked about and looked at Maria, but still doesn’t want to touch her or be too near her.

Now my next battle is to get the insurance company to overturn their denial of her walker and sit-to-stand, but I think I have just about enough ammunition so there’s not even a shadow of a doubt that these items are essential. The physical therapist at school said Maria took a few steps in the walker there at school–the one Maria couldn’t even stand up in earlier in the year! Slowly but surely she’s making progress.

The other thing I’m working on (mountains of paperwork!) is getting hippotherapy for Maria (therapy with a horse). It’s supposed to really improve the upper body strength. I’ve heard that if you improve the gross motor skills, it has a ripple effect in improving many other areas, including cognitive. We will see!