Maria Rose

Once a year, the Scottsdale Rotary Club and a couple other groups sponsor a free special day for special kids at the McCormick-Stillman Railroad Park in Scottsdale. We’ve been before; I’m glad we decided to go again this year. We got there 10-15 minutes after it started (10am) and already the parking lot was full! The whole place seemed much busier than I recall from years past. I wasn’t so freaked this year, Manolis still kinda is. We did some very cool things this time…

First we got a flower painted on Maria’s cheek, which she enjoyed. Then we hung out with Ronald McDonald for a bit. He was kinda lame, didn’t look the part to me, did a few magic tricks, Maria seemed to like it (the kids mostly). Then to the petting zoo. We didn’t go in because it was a bit chaotic; we stayed outside the fence and reached in to pet the miniature donkey and the baby miniature donkey. She loves those donkeys!! Lots of smiling and nice petting. A little grabbing, but not much. I was holding her and her daddy was manning the camera, so we don’t have many good shots. I wonder if she made a connection to last week’s donkey or if she just like the fur.

We watched the pony rides, but she wasn’t too interested. I think she needs to see things more close up. Then we pet the police dog that helps with emergencies. He was next to the Bat Mobile — really, there was a totally tricked out Bat Mobile. Big black car with orange accents and bat logos on the doors and wheels. Kids were sitting inside and getting their pictures taken. I can’t believe Manolis didn’t think it was cool?? (he’s all about the Hummer. barf).

Then, after I finally wore him down, we went to ride the train. Line wasn’t too long. I think she liked it. I liked it the most. It’s a good way to get a lay of the park because the train track goes around the rim of the park, and finally through a long, dark tunnel before going back to the beginning. The kids loved the tunnel (lots of screaming)! Couldn’t tell about Maria.

After the train, we went on the merry-go-round. I’ve never taken her on one, except maybe to sit on one of the benches on a carousel in a mall or something?? It’s a good thing both of us went on it with her because the horses really go up high, and I’m not sure how easy it would have been for me to hold Maria up and on the horse while it went up and down and around and while I stayed on the carousel. I was on the outside, it was going rather fast, I was holding onto the pole for dear life, sorta hanging on to Maria. Manolis, being taller and on the inside, had a bit of an easier time, but the amount of movement still surprised us. Meanwhile, Maria was totally digging it! Holding on, looking up, smiling. I wish my camera still had batteries so I could have taken a picture of her face when he was taking her off the horse–pure joy! I told him this is what it’s all about. Taking her to these things isn’t about how comfortable we feel or what we want to do, it’s all about Maria and her experiences and doing new and fun things.

We were going to go hang out at the playground, but we had to rush home to feed her lunch, chill for a bit, then go to occupational therapy. She did ok. We got some things afterward at Home Depot, then just before we put her in the car to go home, she had about a 20-second seizure –quite long by her standards. Damn. she’s still having a couple/few a day, most lasting less than 10 seconds.

After recent events, it’s nice to be able to report some good news.

Cathy and I took Maria to a folk/bluegrass festival. Maria liked the music, clearly perking up when each song would start. She was doing some good standing and even was trying to clap along with the music! However the best part was the petting zoo. They had some goats, donkeys and llamas. Maria of course loved the animals and she petted them. Actually petted them. She didn’t pull their fur or bite or anything. She just petted them very carefully. Cathy got it on video and we hope to post that soon. Maria even tried to hug one of the donkeys; very cute.

Maria’s seizures are less frequent, though not gone, with the higher does of medication. We are also doing the asthma inhaler and nose spray which Maria just hates so that’s proving to be interesting. We won’t start the other two medicines (the muscle relaxant and the one for her hearing) until her seizures are under control. We’ll probably start the muscle one first, wait until everything is stable for a couple of weeks, then start the other one. I haven’t found much on using amantadine with hearing but I finally found some papers about its effect on sensory processing disorders. They were way over my head but basically it might help with all of her sensory processing, not just her hearing. That would be very exciting!

So we are hoping things will be a bit less dramatic over the next few weeks, and maybe even improve under the new medication.

I finally got up some of Maria’s pictures for Jun-Oct 2008 and Nov-Dec 2008. However it also reminded me how much I hate the gallery software I’m using so I really need to find another one before posting more.

Thank goodness spring break is almost over, I don’t think I could take much more of it! We’ve had so many appointments (which I made), news, recommendations, drugs, procedures, etc.

Today we had 2 appointments–orthopaedics and pulmonology. We saw a new orthopaedic doc. Last time we saw a spine guy, but since her hips seem to be an issue, we went to the guy who sees most of the CP kids. Maria’s right hip is about 30% out of the socket, the left is >50% (maybe 80%, I don’t remember). It’s worse than it was last year. He wants to fix it to minimize her chance of having pain in her hips when she’s older. The choices are: 1) surgery to lengthen the tendons in her upper leg and her Achilles tendon. “Minor” surgery, but she’d have to be in a cast for 6 weeks and we’d have to get a special car seat and stroller/wheel chair (hopefully rentals). As he talked more about it, he said that’s typically done when a child is 3 or 4. He was thinking she was a year younger. 2) surgery to cut her leg bones. Beyond that I didn’t catch the details, as my brain sort of froze. He said with that surgery there would NOT be a cast, and I’m not clear on recovery, etc., but she’d miss about 2 weeks of school. He has twin boys with cerebral palsy and his son who doesn’t walk has had that surgery. I asked, and he confirmed, that basically we have to have the surgery. There really isn’t another choice, short of Maria being able to walk like a typical child. He assured me there’s nothing we could have done to prevent this. Not more stander time or walker time, and the bike isn’t making it worse (or better).

His surgery schedule is booked through the summer. I told him we couldn’t do it until after October 22 anyway, since that’s when Manolis is coming back and I can’t do it without him being here (especially with my pending surgery on August 3). They’re going to call us to schedule it. wow.

The appointment was at the new Phoenix Children’s Hospital in NW Phoenix — nice place! Small, new, very busy, and only 10 minutes from our house!!

Thirty minutes after we got home, we had to leave for the main hospital (where we usually go) for her pulmonology appt. When I told her we were just there to clarify the asthma plan because I was confused about which medicine was for what, she whipped out the Asthma Management Plan that I signed a year ago and said (accusingly), “Is this your signature?” I said, “Yup.” And we went from there. She was actually quite nice about it after that, finally remembered that she saw Maria when she was a tiny baby. (I thought she was the nurse practitioner we saw a year ago who I really liked. I recognized her name, and it turns out it was because we saw her when Maria had the apnea monitor.)

Bottomline from that appt: we need to give Maria 1 of her inhalers 2 times a day as a preventative, so even when she sounds great, even in the summer, all year-round. And we need to give her a squirt of nose spray each day for allergies (because that’s a trigger). Then if she has symptoms of lung distress, then we add her other inhaler or breathing treatments, and if she doesn’t improve within 24 hours, then we call them (the pulmonology clinic). And of course, we walked out of there with another fistful of prescriptions. OMG!

So, our so-called “Spring Break” consisted of 2 major appts for me; 1 major one for Manolis; 2 typical therapies for Maria, 2 Jin Shin treatments, 3 significant doctor appointments–all with new doctors/nurse practitioners and all with significant news or recommendations or medications, and an increase in her ongoing medicine; and a meeting with Maria’s new state support coordinator (who is irritated that we’re not using the communication device that the state paid more than $1000 for). I think I am completely maxed out. I would certainly feel a lot better if I had a box of See’s Candies or a big chocolate cake!!! (Schwan’s has a very good chocolate cake that we recently ate in no time flat..)

So, don’t forget, no matter how much your life sucks, ours usually sucks more!! and harder!! But at least Maria is a sweet, beautiful angel. That really helps!

I finally touched base with the neurologist’s nurse today. She said Maria’s Trileptal level was fine in October, but is low now. She claims she told me to increase Maria’s Trileptal from 2.5 ml to 4.0 ml twice a day, but for the life of me I don’t recall her telling me that. I can’t imagine I would forget something like that. Anyway, she said no big deal, in fact, that makes the low Trileptal level less concerning since she’s not getting enough of the medication.

The doc would like us to try the increased level of Trileptal for 2 weeks, then start with 1 of the new meds (doesn’t matter which one) for 2 weeks, then add the 2nd new med for 2 weeks. That way we will know what’s doing what, rather than changing or starting 3 new things at once. (New meds are supposed to make a difference in a couple days, so we should know quickly if they’re going to be worthwhile or not). Now I remember one of the reasons I like him so much. He’s a good thinker, makes sense, and doesn’t overreact to things like daily seizures. He wants to see us, maybe in May? I made an appointment with someone on Maria’s last day of school.

I got the neurodevelopmental pediatrician’s report today–4 pages and 11 recommendations (although one of the “recommendations” is ‘Family congratulated on wonderful support they are providing’ — gotta love that!!). She’s also recommending possibly getting another EEG monitoring (where you check into the hospital and get hooked up to the EEG and monitor for at least 24 hours). Seems like overkill, but we’ll see what the neurologist thinks. Work on making choices, 6-8 pictures, switches; pulmonary follow-up; continue making great strides toward mobility and posture; investigate a wheelchair van; look into getting an adaptive potty chair; continue ongoing therapies; come back in a year. This is just from 1 doctor, remember. We also got a bunch of follow-ups from the new physiatrist, as Andy mentioned yesterday. And we still have 2 more doc appts this week!!!

One of the recommendations from both docs we saw this week was to come up with a simple communication system that everyone will use with Maria. The school speech therapist should develop it (in consultation with us and the home speech therapist). I continue to ask for this, but obviously I’m not asking clearly enough, they’re not responding clearly enough, or I’m just not hearing what they say. Either way, I continue to be frustrated…. We did get a switch for the computer, so when you push the button (the switch), it acts as a left mouse click (or right click or double click or enter or space — there are 5 options with the switch interface we got). It works well with the books Maria’s been reading/listening to on the computer as part of her schoolwork.

I’m going to the Abilities Expo in LA in a couple weeks to learn more about more of these types of things, and especially to start getting educated on what vehicle will fill our needs. My RAV is getting to be too small….

Oh yea, and Manolis won $500 in one of the AZ lottery games!!!

Maria decided to start her spring break with a 7-hour marathon of therapies, doctors and x-rays. That girl is such a workaholic!

The big thing today was we met the new physiatrist. He’s the one we’ve heard is really negative so we went in prepared.

In walks this morose man. The instant he sat down, Maria alerted and reached out to him and she’s a pretty good judge of character. He did say a few negative things. He didn’t like Maria’s stroller, another one who says it doesn’t provide enough support. If the PT who has been with Maria for 5+ years thinks it’s OK, that’s good enough for us. He pooh-poohed the bike, pretty much saying it’s an expensive toy despite the fact we say immediate improvement. He thinks Maria should be in a special needs school instead of public school – we understand the trade off and feel what she gets from public school is better. And one of the drugs (more on that later) he prescribed is supposed to blur vision, and he said that wouldn’t matter because Maria already has vision issues, which was a pretty crappy and insensitive view.

However though he was somber with us, he was good with Maria. He smiled, talked in goofy voices and didn’t mind when she kept grabbing and him and trying to bite him. He was a little rough with her but that’s part of what he does – tests the limits of her joints and tendons. He spotted a lot of little things about the way she moves and stands and so on and had some pretty good insights.

Overall we liked him, but he did have some troubling conclusions.

He thinks Maria’s left hip is migrating out of the socket, something which happens to kids like her because their tendons get too tight. He sent us for hip x-rays to check it out. He prescribed new AFOs though we knew it was time for those. He prescribed a sort of soft trunk brace which will help her when she is sitting or standing. We aren’t as happy about that but he feels if Maria isn’t worrying about her trunk she can focus on head control and not hunch forward so much, and then when her neck is stronger we can stop using the brace. We also won’t use the brace all the time, only on occasions like when she’s sitting in her chair to eat.

He also wants to start Maria on two new drugs. He mentioned baclofen but said it can also increase seizure activity. Instead he suggested Artane which is less effective but shouldn’t trigger seizures. This medication should reduce some of the tightness in her muscles. That involuntary flexing interferes with Maria’s ability to control her own movements so he thinks this will help her move better. We should see results immediately so we can decide whether or not it’s working. We did talk about the baclofen pump Maria’s neurosurgeon suggested and he said if we find the oral drugs work, the pump is better because it releases a steady trickle of medication directly into her spinal fluid (fun!) but it also means major surgery to implant the pump in her abdomen (also fun!).

The other drug is amantadine which he thinks may help with her auditory processing disorder. It’s a drug used to treat Parkinson’s and he says doctors noticed patients who took it experienced improved hearing. The weird thing is I can’t find anything on the internet talking about that.

We want to touch base with the neurologist before adding these drugs to the cocktail and the plan is to start one, try it for a while and see what happens and then add the second one later. We really hate the idea of more drugs, but if they help then we are all for it. As much as we hate the medications she already takes, they are certainly better than seizures.

Maria continues to have a few seizures every day. Cathy is going to check again with the neurologist to see if the blood tests have come back so he can decide if he needs to increase her dosage. In the meantime we are all stressing out about it.

We got one piece of good news though. It turns out Sue’s problem was not a blockage just good old stress so she didn’t have to get another stent after all.

We have been blissfully seizure-free for months and months. In September or October, the teachers thought they saw a few, but we didn’t, so I didn’t get too worked up about it. We sorta have thought from time-to-time that perhaps we’ve seen one or two here or there, but always short and not repeated and not for sure, so maybe yes, maybe no, but no big deal.

But now, there’s no question. I can’t remember what happened last week, but I do remember that she had 3 seizures on Saturday–1 before speech therapy, 1 during speech therapy, and 1 after occupational therapy. Then Sunday, I was gone for 2 hours and she had 5, so Andy gave her a Clonazapam. By the time I got home, she was zonked and zoned and oh, man, how I hate to see her like that.

Monday was good. Tuesday I had to pick her up in the late morning from school because she had 3-4 seizures; they gave her a Clonazapam, so we took her home to sleep. Wednesday was good. Thursday she had 3 or 4; so Manolis picked her up near the end of the day — she fell asleep at school, so although 2 of them lasted 45 seconds (which is very long for her), we didn’t give her the Clonazapam, and she seemed good last night. In fact, Manolis took her for a bike ride after he picked her up. She ate well, slept well. Was a real stinker this morning with her medicine–worse than ever! Does she not understand that she needs that medicine??!!

All I can say is thank goodness next week is Spring Break — I think we all need a break! Too bad Maria and/or I and/or Manolis has 1-3 appointments each day during the “break”. At least I’ll get my icky dentist appt out of the way, and hopefully they can start to figure out what the hell is going on my pelvic pain BS. We’ll surely see that Manoli’s heart and blood pressure are doing great. Maria will get a couple Jin Shin Jyutsu appts in to hopfully calm all the craziness. Quick check-in with the pulmonogist (of course now her lungs seem to be clear, thank goodness!). And the appt with the new physiatrist. See, just another simple week in our crazy life!!

One exciting thing about this past week is they finally hooked up our solar! So in 3 days, we’ve generated $19 of electricity and offset 138 lb of CO2 — how awesome is that?!

(So, what’s the “break through”? When you’ve been seizure-free for months [usually because of medication] and then start having a few seizures, they call them break-through seizures.)

At one of Maria’s recent appointments they weighed her and she’s up to 40 pounds – we aren’t sure when that happened. She’s started having seizures over the last couple of days so we think her medication needs to be adjusted to her new body weight. I had to give her the Clonazepam emergency medicine today for the first time in months.

Another problem we’ve noticed is she’s not fitting in her stander very well. I measured her and, although it’s hard to get a good height reading, it looks like she’s about 41″ tall. The stander is only good for kids up to 40″. Since the state fought us so much the last time we are reluctant to go down that road again. Since this one is still in great shape, other than the bite marks, Cathy is thinking about calling Shriners to see if we could swap this one (which they paid for anyhow) for a bigger one.

Life is never boring here.

As we may have mentioned, one of Maria’s therapists is convinced Maria has Rett Syndrome, a neurological condition marked by repetitive movements like hand wringing. I read about it and instantly could see Maria doesn’t fit the profile at all. The response of course is it could be an atypical case. However both the neurosurgeon and the neurodevelopmental pediatrician say hydrocephalus and Rett Syndrome are mutually exclusive. The neurological profiles are incompatible and you simply can’t have both. Since we know Maria has hydrocephalus, that means no Rett Syndrome.

Maria’s breathing has been a little off. The school nurse has reported her blood oxygen has been now and then and they’ve given her breathing treatments. We are giving her breathing treatments at home occasionally and we might take her back to pulmonologist. Because we need another complication.

In that vein, Sue has another blockage so is going to have to get a second stent. Since Manolis is here this time plus Maria’s in school, it will be a lot easier to cover her shifts. We are hoping she is back to work before Manolis leaves this summer. Plus Cathy has two major surgical procedures coming up so things will be interesting for a while.