11th Birthday and 6th Grade

November 8th, 2015

Just when I thought I was going to be blogging more often and now here we are, 5 months later, without a post. It’s amazing how much less gets done when The Mama is dealing with her own medical challenges. But the wrist is better and the foot is slowly healing so, fingers crossed, everything will be back to “normal” soon, whatever that means.

So, Maria turned 11 on June 23. She went to UCP for their summer program rather than going to the school district’s ESY, or extended school year (I call it summer school). I think it was good for her, except she wet through her diaper at least a couple times a week–that was annoying! But they went on lots of field trips, which was fantastic!

Maria started 6th grade this year, do you believe it? She has a male home room teacher, who seems very nice. Maria’s typical special Ed teacher has been sick most of the semester, so she has another one, who is very nice and very feisty–in a good way. Maria got accepted to UCP’s after school program and it took more than 8 or 9 weeks to get the transportation figured out, and then it was only because of the feisty teacher. Sure helps to have someone on my side. After a while, it gets exhausting fighting about every little thing.

The 6th graders are going on an overnight field trip in the spring, so the teacher, para, and I went to check out the camp. Next we need to check out the bus to see how we’ll get her on it.

Oh yea, and I think Maria has blepharitis again. Oh boy.

Baby Teeth – 3 down, 4 to go

June 6th, 2015

I finally got the dentist to pay attention to Maria’s teeth. She had at least 4 adult teeth poking out the sides of her gums while the baby teeth were loose, but staying put. One of the baby teeth on that “famous” upper left side that she’s constantly pushing on with her arm or hard plastic toys or whatever she can jam against her jaw seemed to be moving and sitting at an awkward angle. She played with it a lot with her tongue.

Anyway, we’re doing 1 quadrant at a time — pulling baby teeth and sealing the molars — starting with the 3 in the upper left. Next week we’ll do 2 more, then 1, then 1. Yikes! The first estimate she gave me was Holy Moly Expensive because we don’t have dental insurance for Maria, but somehow they were able to get the medical insurance company to pay a lot of it (and I think they reduced the price somewhat), so now her whole mouth will be less $ than the original estimate for the 1st quadrant. whew!

She got the first 3 out last Thursday. She did so good! Hardly jumped at all. She seemed less nervous than I was, perhaps the 5 ml Valium I gave her? We’ll see how she reacts when we go back next week. 2 of the 3 were super loose. 1 of them had a pretty long root still (of course I always keep her teeth). It’s amazing how quickly young gums heal! And behind the deep-rooted one, the adult tooth already started poking through the next morning!

Now that a week has gone by, things seem to be settling down with Maria’s Summer Program. She seems happy when she comes home. I’m developing a relationship with the teacher and the bus driver (who is also in the classroom). They’re seeing Maria’s personality come out. Patience and perseverance is what it takes to be a special mom.

Summer Program – UCP

June 3rd, 2015

Maria on bus

Maria on bus

Maria started in the summer program this week at United Cerebral Palsy (UCP), which luckily is only 4-5 miles from us (which, in Phoenix, is unheard of. Typically everything is across town!) We’ve been trying to get into this program for years, can’t believe we finally lucked into it. Now, fingers crossed, maybe we can get into the after school program when school starts.

Transitions are usually difficult and this one does not disappoint! Day 1, the bus was 70 minutes late. Day 2, 50 minutes. Today, about 35 minutes. Maybe tomorrow it will get here before school starts. First day, bus driver was an older woman. She got lost, very lost. 2 wheelchairs on the bus, had to move the 1st wheelchair to fit Maria’s in (poor planning). Second day, bus driver left the door open while she was getting Maria in and one of the kiddos escaped. Fortunately, Manolis noticed and we corralled him and led him back in the bus. (Same kiddo ran out into the fenced-in courtyard when I was talking with the teacher by the open classroom door.)

Day 2 I went to visit the class and the teacher to ask/answer questions — it’s tricky when you have a non-verbal, super challenged child. Their policy (vastly different than the schools) is an open-door policy — parents can visit their kids anytime. I went to the front desk where 3 women were standing. I said I’m here to see Alexa’s class. Blank stares. My daughter Maria is in her class. Nothing. She’s expecting me. Nothing. This went on for much longer than it should with me trying to explain what I was doing there and the 3 of them just staring at me like I was speaking Greek. SUPER ANNOYING!

Finally I get to Maria’s class and she was sitting alone. It’s supposed to be a 3 (kids):1 (adult), and perhaps I got there precisely when the teacher walked away, but…. A lady was teaching them to fold paper, so why wasn’t anyone helping her? I grabbed a piece of paper and helped Maria fold it. Trouble with a kid like Maria is she’s not a runner or a screamer or someone who lashes out if she’s ignored, she just falls asleep and is sweet and quiet, so if you have the choice between keeping a runner from escaping the classroom and monitoring the sweet quiet one, Maria will lose out every time.

So I will need to visit frequently in the beginning to get us all used to each other. It will be easier when Chris (OT) comes back from vacation and helps them get to know Maria while giving her therapy. In a couple weeks, she’ll start feeding therapy so the new therapist can help them feed her, etc. I’ll pop in tomorrow (Day 4) to take Maria to the dentist, so we’ll see what’s going on then. She has to get 3 teeth pulled :-(. I finally got the dentist’s attention so she thinks Maria needs 7 teeth pulled, one quadrant at a time, starting with the upper left, which has the most teeth to be pulled.

boot on foot


And apparently I have a broken foot. To be more precise 2 bones by my left ankle are swollen (swollen bones? ew!), bruised, fractured, and maybe oozing bone marrow? And I have a complete tear (class 3 out of 3 classes) in a ligament. And some other stuff. So I have to wear a huge boot and shouldn’t carry Maria anymore, which is a bit challenging but at least it’s not my right foot or I couldn’t drive.

Last Day of 5th Grade

May 29th, 2015

It’s hard to believe that Maria is done with 5th grade. Gulp. Less than a month and she’ll be 11. I went to her class “party” and was one of only 2 parents. All they did was eat pizza and ice cream and get rowdy while the teacher ignored them. I actually saw a kid running across the top of the desks and she didn’t even notice. She was fine I guess, but not well organized and didn’t seem to have that much to do with Maria or communicate much with me — and that’s big for me! Her other 5th grade teacher was good –friendly, organized, emailed, etc. She said really nice things about Maria and gave her really good (too good) grades. I didn’t have much communication with the special ed teacher this year either. Odd. But I guess that’s ok. The ones I talked with the most were the paraprofessionals (the ones who are with her all day) and the school nurse.

The kids wrote super sweet things in Maria’s yearbook – mostly the girls. I can see the attitudes starting to emerge from some of the kids’ not-so-sweet personalities. I think it’s only going to get worse as they get older, but there are still enough sweet ones to make it good.

On Tuesday, they did the awards ceremony and class performance. Each of the 3 5th grade classes performed a dance to a song. Maria’s class was probably the least polished. They kept changing their mind about what song to do, and finally picked the song the morning of the performance (as I said, the teacher is not so good at managing her class). Apparently they did better when they performed for the whole school. Somebody videotaped it and will post it to the school website. I’ll add a link when they do it.

Looks like Maria is getting into the United Cerebral Palsy’s summer program, which is great! It’s a great program, June 1-July 31. M-F 8:30am – 12:30pm. They provide transportation. They just gave me the paperwork today and I have to get doctor’s notes, get the state disability division to change her Individual Service Plan, right when our service coordinator is no longer there. She was great, and is going to be missed, but since they haven’t re-assigned us yet to someone, I’ve called and emailed about 4 or 5 people to make the change. She can’t go until that’s done. Nothing ever gets done with 1 phone call. So annoying! But they have a great reputation when you finally get the kid in there -they take them out in the community, they play, they learn, lots of activities, and it’s a 1:3 ratio (1 adult, 3 kids), which should work for Maria.

And I took her to the dentist today. FINALLY got her attention about how jacked up Maria’s teeth and mouth are getting. She has 3-4 adult teeth coming out the sides of her gums, so they’re not properly pushing down and out the baby teeth. So she wants to pull 8-10 teeth. I didn’t get dental insurance for Maria because it’s so expensive, and the place we go no longer takes her Medicare, so for the first quadrant, it will be more than $600. But we have to do it. Her mouth is really getting crazy. Our appt to pull 2-3 teeth and seal the molars (to protect against decay) is next week, I think. (plus I have a follow-up mammogram in the morning, and have to go over the MRI results for my ankle on Monday-yikes-and it’s been a year since Maria got her hormone implant, which they said lasts a year, and it just goes on and on with nary a breather).

Botox and Bowels

May 9th, 2015

Nice title, huh? Monday Maria got a bunch of botox in her hamstrings (esp the left side) and her abductors (mostly the right side, I think). You’d think it’d get easier to watch your child get put to sleep (they use a gas mask), but it doesn’t. It was super quick — only 20 minutes or so, and she woke up quicker than usual, which is great.

They didn’t say much about pain, mostly just about fevers. So, of course, Maria seemed to be in lots of pain Tuesday and Wednesday. We went back in to “the botox doc” as I call her (she’s a physiatrist), and after checking Maria out, she thinks the pain is from poop (constipation). She felt lots of stool in Maria’s belly and seemed concerned, so she sent her for an xray — the 3rd or 4th one of her belly for poop in as many months. They take the xrays, then I never hear back. botox shots

The interesting thing though, is rather than prescribing Miralax, like all the other docs do, she said Maria’s lower intestinal muscles and sphincter (TMI, I know) are really tight, so you can shove a bunch of stuff in from above, but it doesn’t help if it can’t get out. So her suggestion was a Dulcolax suppository. And guess what? It worked like a charm. She wants us to do it every other day. Maria seems to be feeling better.

Can’t tell yet whether the botox is working. Her legs do seem a little looser. It takes about 2 weeks for it to be fully effective. So we will see if it’s going to be worth all the angst. Part of Maria’s issue might have been she was feeling my angst.

Autonomic Instability, Seriously?!

April 7th, 2015

On March 11, Maria had another “seizure” at school. They called me, said she wasn’t feeling well. By the time I got there, she was having a full-on episode, so I interrupted the nurse, who was talking to someone, and said you have to call 911 (it had been going on for several minutes). I gave her her rescue medicine, no change. Paramedics finally got there, gave her a shot of versed (after what seemed like a long time), I think maybe that worked? I didn’t have my cell phone or my purse, because I just grabbed the van and went to pick her up quick, so I couldn’t call Manolis. By the time I called him, we were in the ambulance on our way to Mendy’s Place (closest hospital). He was so upset/panicked/whatever, that he went to Phoenix Children’s Hospital, so after using the hospital phone several times, finally got him and he came to Mendy’s Place. Sue came to sit with Maria while Manolis took me to my car. I packed a few things (I pretty much knew this time we wouldn’t get away with no hospital stay) and headed back to the hospital.

I don’t remember what all happened at Mendy’s Place, except they were wonderful, it’s not nearly as “beautiful” as PCH, and they wanted to send her on to PCH as soon as possible. They gave her morphine, nausea med, and Benedryl because they thought she had pain. They also did a chest xray and saw a pneumonia starting, but probably not from aspiration. They had her on oxygen and because of the seizures, she had to be transported by ambulance to PCH. I was so used to the super fantastic paramedics that show up when you call 911, that when these 2 goof balls showed up to transport her, I almost lost it. Apparently, it showed, because they told me between the 2 of them, they have 60 years experience, or some crap. Very scary to let her go off with them while I drove my own car…

All I remember about PCH is that we entered via the ER, of course, were in a room for several hours before going up to “the floor” (8th floor). She kept having her “seizures”, they kept giving her medicine, they wouldnt’ stop, they were worried about her “losing her airway”. I honest to God thought they were going to have to put her in a coma to stop the seizures. They finally called a code red or something where everyone comes into the room to quickly assess her and they decided to move her to the PICU (pediatric intensive care unit) on the 6th floor. I remember seeing a super cute guy in the room who wasn’t doing anything but leaning against the cabinet and watching; then I saw him again out in the hall of the PICU, standing calmly, looking concerned, not doing anything. I didn’t ask anyone who he was because I’m convinced he’s one of Maria’s guardian angels sent down to keep me calm. It really did help when when I’d look over at him.

Finally Wednesday morning they hooked her up to an EEG, of course, she had no episodes until 4:30pm and guess what? Not seizures. Definitively not seizures according to the EEG. What? On rounds, I overheard them say it was Autonomic Instability, a term which does not exist in Google. Here we are a month later and I’m still trying to find out what that means.

While Maria was in the hospital, they added gabapentin to her med regimen. She tested postive for Human Meta Pneumo Virus, which she had 3 years ago and was in the hospital for 10 days and out of school for a month. This time only 5 days in the hospital and out of school for a month. Tomorrow she’s going back for the first time since Mar 11.

We’ve been to the physiatrist, who wasn’t very helpful with the new diagnosis. She thinks Maria’s in a lot of pain from muscle spasms because her wheelchair is such a piece of shit that doesn’t fit her or support her back at all. Went to the GI who thinks it’s constipation and maybe reflux, but not chronic pancreatitis (one piece of good news). Went to the eye doc who says her optic nerve is again a bit worse, but has no thoughts about all the other stuff we’re dealing with. Went to the pediatrician, who agrees that this is puzzling, she’s not herself, but isn’t sure what to do because she assumed (as did I) that the neurologist would have answers. Got results back from genetics that she does not have either Rhett’s Syndrome or Angelman’s. She didn’t test for mitochondrial disease, which is what I thought she was testing for, so we have to go back again. Her wheelchair is at Nu Motion, but they’re still making adjustments and it should be ready sometime this week, but they don’t seem too concerned at how poorly her wheelchair fits her now. Thursday is our last appt with Dr Shrader, ortho, because he’s moving back to Louisiana, which I’m positive is a result of politics because he just opened his gait lab and his CP clinic was up and running. Bummer. Dunno if he’ll have any answers for me, but neuro said to look into ortho-related pain that could be causing the shaking episodes. Oh, and if we want to, we can do a 3-day EEG in the hospital this summer. (what’s the point if they’re not seizures, right?) So, bottom line: Nobody knows what it is. Nobody wants to take responsibility for figuring it out. Everybody suggests we go to somebody else to come up with a reason. Awesome! Thanks guys! You Rock!

And among all this, I had a bad infection in my belly button (where else?), which caused me to miss even more work, was very painful, and very scary (doc sent me to a surgeon that day; I still have to go back to him and he still might have to do something to it.)

Chronic Pancreatitis?

March 7th, 2015

Pediatrician got the blood test results back and Maria’s pancreas enzymes were a bit off. She is going to explore chronic (not acute) pancreatitis with the GI doc. I liked it up (as I did with pale colored stools) and again was reminded why I don’t look stuff up on the internet. I don’t need that panic-inducing information, thank you very much.

There was something interesting about metabolic blah blah, which is what we are exploring with her optic nerve atrophy. Maybe it’s all related?

Neuro doc upped Maria’s seizure meds. He’s pleased she was seizure free for so long, wasn’t happy about a 20+ minute seizure, however. Said she looks good. She does look good, all 76 pounds of her.

Today after occupational therapy, again, she looked pale and tired. She does great in therapy, then crashes in the afternoon. I told Chris if we end up in the ER today, I’m going to blame it on her because it’s always on a Saturday…

Fevers, Poop, and High Altitudes

March 6th, 2015

Not necessarily in that order…

After Maria’s seizure and trip to the ER in the ambo, she was home from school for a week. Never really showed many symptoms as long as she had Tylenol. A week or two back at school and our cousin passed away unexpectedly, so we drove to Los Alamos (White Rock, really). Spent the night in Albuquerque and saw Maria’s grandpa for a short bit, then picked up Uncle Andy, who was in ABQ for work, and headed up to the 6400′ elevation of White Rock. It was super cold and windy–Maria wasn’t impressed. It seemed like the elevation was bothering her too. I don’t think we gave her enough fluids, looking back on it. We had a nice visit with our cousins, even though it was a terrible situation. We had to leave before the actual funeral, since we’d missed enough work and school.

We got back to Phoenix on Tuesday evening (after almost having to spend the night mid-way due to snowy roads and road closures), and Maria went to school Wednesday as usual. That evening, however, she had a fever of 101.5, so she had to stay home Thursday. Thursday she had a fever, so stayed home Friday. Friday she had a fever again. I went to a Feeding Conference all day Saturday and when I got home, she still had a slight fever, so I texted the school nurse to see if I should go to the doctor and she said yes. Then I called the pediatrician’s office to see if we should make an appointment (they’re open Sunday morning), and they said we should go to the Emergency Room. I called Urgent Care to see if they had an MRI and x-ray machine in case it was her shunt, and they also said go to the ER. So Saturday night, Manolis is at work, so I loaded Maria up in the van and took her to the ER.

Of course, the waiting room was packed to the gills with a line out the door to sign in. It freaked me out and I almost had a panic attack and left. They must have sensed it, because they brought me forward in front of 2 other families and got us in a room within about 3 minutes. They did a CT scan of her brain (odd, since they usually do a one-bang MRI–CT scans are much faster!), shunt series of x-rays (head, chest, abdomen), and a couple additional pictures of her stomach because it has looked distended for a couple days. They took blood and urine and put an IV in (but no fluids). Everything came out normal, so they sent us home. We got home around 1am.

CT Scan

CT Scan

Which brings us to the poop. Seems like the color of Maria’s poop has gotten more and more pale since the weekend. I noticed. Sue noticed. The aide at school mentioned it, but the nurse was too busy to look at it. So I googled it, which I rarely do, and saw something about not enough bile and potential obstruction, so I called the Blue Cross nurse again and she said we should be seen within 72 hrs, but I should call the doc first thing in the morning. Went to the doc today and of course Maria didn’t gift us with a sample today so they took blood and we should get the results tomorrow.

And on top of all that, my sweet kitty, Kijana, must have jumped off something wrong because she’s limping very badly, so I might have to take her to the vet.

And in the middle of all that, Manolis had a gusher of a bloody nose (6 hrs of gushing. so gross) before we left for NM and we had to take him to the ER, which confused Maria because it’s usually all about her and this time it wasn’t. Good lesson, I suppose?

We hope the nonsense is behind us. This Sunday, we’re looking forward to going to the batcave! Maria was nominated/invited by a non-profit agency to be the honored guest at an exact replica of the 70’s series Batman’s Batcave. They have the real BatMobile, a BatCopter, and all sorts of other fun things. They offered us a ride in a limo, but I think we’ll just take our silly ol’ van. Don’t want Maria to get a big head! We invited some of her school buddies, so there will be almost 30 of us! Fingers crossed that the poop thing isn’t any big deal…

Maria’s Second 911 Call

January 31st, 2015

It’s been four and a half years since her first 911 call and now she’s had two.

I went to see Maria today, my usual Saturday visit. When I got there she was asleep on the floor and she was shivering. I asked Cathy, “Why is Maria vibrating?” I thought she was having a weird dream or lying on one of her vibrating toys or something but Cathy realized that (duh!) it was probably a seizure.

We sat her up. Her entire body was shivering like she was cold. It was mostly in her arms but I could feel it in her core and at one point her teeth were chattering. She didn’t feel cold though. She was kind of responsive but still half-asleep so it was hard to tell. Cathy gave her a Clonaizpam, her emergency seizure medicine, and it did nothing. After five minutes we talked about calling 911; when I realized her lips were blue that pretty much decided it.

The ambulance came and these very nice guys came in and started checking her out. It’s a little bit of a blur at this point but her oxygen was OK by the time they got there. Her blood sugar was low but they figured that was because of the seizure — her muscles were working overtime and burning up her fuel. The biggest surprise was that she had a fever. Cathy and Manolis have been sick all week but have been careful to stay away from Maria. She hasn’t been sick at all.

I rode along in the ambulance while Cathy followed in the wheelchair van. Manolis had to go to work since he doesn’t really get time off, and it was probably better for him to stay busy instead of fretting at the hospital. Maria had stopped shaking by the time they got her in the ambulance but she was still kind of sleepy and cranky. I figured she was just worn out from whatever had happened but Cathy was more worried. In the ER it took us a good hour or more but we finally got them to give her some Tylenol, which calmed her down but didn’t break the fever, and then they gave her Motrin and that finally took care of the fever.

They took blood — took them a LONG time to get it but the nurse was really careful not to hurt her and Maria was very quiet and cooperative. They swabbed her nose to check for flu and they sent her for an MRI and a shunt series just to be sure it wasn’t her shunt.

Good news: her shunt is fine. Bad news: positive for flu. Great news: they sent her home! We figured for sure they’d hospitalize her, but they sent her home with a prescription for Tamiflu and instructions to keep a close eye on her and give her plenty of Tylenol and Motrin to make sure the fever doesn’t come back, which could bring back the seizures. She’ll probably be out of school the whole week though.

It was 8 hours all told from the time I got there and noticed it until the time we got back home. Long day but it could have been worse.

DME Woes. Again. Still.

January 18th, 2015

Maria is 10 years old. In her short life, we have gotten wheelchairs, standers, gait trainers, bath chairs, and other stuff. Every piece of equipment is needed for her quality of life (and the quality and safety of us, her caregivers). Every single piece of durable medical equipment (DME) is a struggle. The state (Medicaid insurance) denies almost everything the first time. Sometimes they deny it again. Every time I try to figure out how to make the process easier. Most every time it doesn’t matter. They change the process, they change the players, they change the requirements. Never have I been able to get anything in writing. Never have any of the people in the vast network of agencies and organizations and companies been able to answer my questions or help facilitate the process. Don’t get me wrong, we have found a lot of very nice people, but they appear to be as clueless as I am as to what to do or not to do to speed along the process. It is ridiculous!

As I’ve said in the past: we aren’t doing this for fun, we aren’t doing this because we are bored or just to see what we can get. All we are doing is trying to keep Maria safe, healthy, and not regressing. I’m sure they are trying to save money, but are they really saving money with all the effort it takes from doctors, therapists, and others to work on the appeals?

When Maria was 3 years old, I resorted to calling Laurie Roberts, a newspaper columnist. It worked. Do I need to do that every time? Should I contact the (new) governor or my congressman? They’re all Republicans, so I’m not sure how sympathetic they’d be. I just don’t get it. It would be bad enough if I never asked anyone what the process is, but I do. I ask every single person we deal with what to do, who to contact, what to include. So what the hell?! Sooooooooo aggravating!

Currently we are trying to replace Maria’s wheelchair and stander. They both got denied, for different reasons, niether makes sense. I spent hours, literally hours, on the phone this week trying to get to the bottom of it. I think I know the next steps, but it will take many more hours of calling, coordinating, and preparing documents. I do have a full time job. Did I mention this is aggravating?!