I watched Amy sleeping this morning, reluctant to wake her. Once again, she was Schrodinger’s baby. Would her leg hurt? Or would she be comfortable to get up and walk? If I didn’t wake her, then she was both and neither at the same time.

Only one way to find out. I gently shook her awake. She stretched both of her legs, both of her arms and she smiled at me. “Are you ready to go to school?” I asked.

“Nope! I’m sleeping!” she said, burying herself in blankets again. So far, so good!

She got up, I got her dressed, and put on her brace. She winced when I put it on, and grabbed her knee. “It’s pinching me!” she cried. I told her that we can get it fixed, and that we could do it right away. Or she can wait, and have it done after school. What did she want to do? She decided that she wanted to go to school and have it fixed later. But she was not interested in walking at all. So I dutifully went and got her wheelchair. Dammit.

She went off to school, just another day. When it was time for her 504 meeting, I was able to find her in the cafeteria eating breakfast. I was able to snag a little picture, it makes me happy that she’s so easily accommodated at school.

At the 504 meeting, we had an opportunity to sit down and discuss her strengths, her condition, her needs, and what the classroom is currently doing to meet those needs.


Per parent-

  • Really smart
  • Loves to learn
  • A people pleaser
  • Loves to help others
  • Loves coming to school.

Per Teacher-

  • All the above
  • Very friendly
  • Children love to play with her
  • Tries very hard
  • Independent

Then we talked about how Amy was born with CPT, but didn’t suffer symptoms (pain) until about 2 years old, and how NF1 and CPT are related. We also discussed how NF1 effects other members of the family. We talked about how she’s presently in a wheelchair and why (pain) and how she receives medication at school. (Tylenol)

Academics were brought up, and Amy’s teacher says that she’s doing fine, and how she has no academic concerns related to NF1, CPT, or anything else.

Then it was accommodation time. So far they’ve accommodated her by:

  • Having a table her wheelchair fits under
  • Bringing an easel or sand table outside for recess when in a wheelchair or it’s requested by Amy.
  • Having a special spot at the corner of the carpet.
  • Having assistance carrying things, or being pushed in her chair when she needs it.
  • A Health and Safety Plan for Pseudarthrosis was created by the nurse.
  • Her name was flagged in the computer roll system so necessary health info is visible and available to whomever takes roll- like a substitute.

In all honesty, it all boils down to the fact that the classroom is really already doing everything that they need to do. But that her health plan does need to be updated to include the use of her wheelchair. So, I’m really pleased that I didn’t really have to “ask” for anything.

On the other hand, I was surprised to learn this was actually not a meeting to create a 504 plan. This was actually just an SST meeting to discuss her needs and make sure that she was safe at school. No plan was made that will follow her anywhere after this year. That kind of bothers me, because why on earth not? But then again, I also understand that 504 plans (unlike IEPs- Individualized Education Plans) are not legally mandated to be created by law until the student enters kindergarten. So I suppose I can understand them not wanting to dedicate time and resources to creating an actual 504 plan when they know Amy will not be at their school next year. In fact, she may not even be in their district, if she wins a spot in the charter lottery this March. (Fingers and toes crossed!!!)

So, one of our action steps will be in March, when we know what school she’ll be attending for kindergarten, we will be setting up and completing a 504 meeting at that site. Then it will be ready and in place on day 1 of kindergarten. So it’s good that I keep all my ideas written down so I can hang onto them.

In the end, I felt it was a very good discussion. It gave everyone at the school site, that is involved in her care, a better picture of what is that she’s facing, and her challenges. That’s really important. We also talked about substitutes and people who come in and out of the classroom and them understanding what’s going on with her.

We talked about safety, and the possibility of a major accident looking like a minor one, or how it may not look like any accident at all. So if she feels she is hurt, Amy will have the ability to go to a quiet area, put some ice on it, and if she doesn’t feel right, ask for a parent to come get her and get her checked out. She also has the ability to self-regulate and decide when she can’t do something, or when she can do something. She knows to ask for help when she needs it, and will be sure that that help will be given it to her.

In the end, I thought that it was a very positive discussion. We will be meeting again next month on the 17th to look at her updated plan-which will include her wheelchair, as well as discuss how things will have gone with Dr. Hoffinger on Tuesday.


At the end of the school day I picked Amy up. She had spent the day in her chair, but when she saw me, she got up and gave me a big hug. ❤️ Then she turned, and then walked out under her own power. (Woot!)

We left from the school and headed to Hanger for a walk-in adjustment. Guess who we saw? Philip. My *favorite* orthotist. Ugh. (You can read about why I don’t like him here.) He was professional, saw us, and I pointed out how the brace was digging into her knee.

He left to go flare it out. When he returned and put it on, it was still digging into her knee and hurting her. He recommended cutting the high point off, told me to go see Carly. I asked why he couldn’t do it, and he pointedly said we needed to see her.


So we left, with my child still limping badly and uncomfortable.

I called Hanger in Modesto (which is about a 45 minute drive one-way, just so you know) and they were booked solid. But she had one slot available tomorrow at 9am. I said I’d take it. Then she says it’s with (dun dun dun) Philip. Damnit. I told her that he didn’t want to do the adjustment, and so she transferred me to Carly- who was booked solid for more than a week. Carly agreed to call Philip and they would work it out over the phone. Bonus: he had an opening, here in town, in an hour. Perfect. I agreed to call our Hanger, and then call her back to let her know what was going on, so we could get it done, and help my baby.

So I called. Got put on hold twice for a REALLY long time. Not that I mind holding, but it seems… odd? Both times it was in the middle of a conversation, and she asked me to hold so a second… They must have had a long conversation. Why? I had a sneaking suspicion he was going to refuse to see us. Turns out, the two openings that show as open today and tomorrow? They weren’t open after all. The receptionist said she had no idea why they showed as open.

Uh huh. Riiiiiiiight.

He flat out refused to see us, leaving my kid in pain, because he doesn’t like me. Wow. He’s really special.

So, I called Carly back, told her that he wasn’t available, and asked her if I should just try to trim it myself. (I’ve done it before with broken braces. That idea got a BIG no. But, she had a client at 4:00 that she felt would be quick, how did I feel about coming down and being on stand-by?

She didn’t have to ask twice!

Unfortunately, a 45 minute trip means no one would be available to pick up Amy’s Big Brother and Big Sister from school. So, I had to pick them up an hour early. So, thanks a lot, Philip. ?

3:55 I walked in, and guess what? Carly’s 4:00 was late. So, 4:02, she took us back.

She ended up trimming it back quite a bit.

Then Amy wanted to run up and down the hall and give high fives. ❤️ Carly let Amy knock her down with the power of her mighty high five. ? Amy helped her back up with a hug, and giggled and giggled. Love Carly, she’s fantastic, intuitive, and amazing with children. I can’t believe I waited so long to switch.

So happy to see her on her feet and comfortable like this!!!

We left, with Amy feeling much more comfortable, and that’s the most important thing.

I checked my phone as we walked out. 4:16pm. That means that the exam, the trimming, all the goofing off in the hall took only 14 minutes. And her 4:00 still hadn’t shown up yet. So we didn’t put anyone out. Whew!

Philip? ?? Having to drive 45 minutes there and back again, and having to pull my kids out of school an hour early to make that drive, to just nip a corner off is kinda BS- but I’m willing to do it if it lessens my child’s pain. I get that I’m a pain in the ass, and he don’t want to deal with me, but taking it out on my 4 year old isn’t cool.

At the end of the day, my girl is happy. That’s all that matters. ❤️❤️❤️

The crazy thing though? I was looking forward to my empty-calendar day. So much for that! ?

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1 Comment

Duffy J Floris · December 14, 2018 at 10:34 am

Sending prayers your way always my Hero

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