Cautious Optimism

Guess who has a PT appointment tomorrow?!!!!!

“I do!!!”

It’s just an evaluation to get a real appointment, but it’s with Sylvia, our own  PT!!! So I’m thinking we can at least get some exercises to start  with Laelia. Yay!

So Sylvia’s (and everyone else’s) schedule was completely full. And I had been playing phone tag with two scheduling people at  Children’s Hospital (five phone calls total just today) before I decided to drive up  there and be annoying in person. And who  did I run into while waiting in the giant, slower-than-dial-up line? Our PT! The timing was completely perfect! She had a  one minute window as she came out to grab a patient and disappear again, and we happened to be standing directly  in her path! We had not planned this at all.  So I very quickly explained our situation as she walked by us. She said she wanted to see  Lali, especially before we made a switch to CCS,  and to tell the people up front that  she’d do anything to work it out. Well  fifteen minutes  later  I finally got to talk to the person I’d been playing phone tag with in scheduling.  (It’s always kind of  weird for them when I just show up. I’m sure I’m on some list somewhere that says, “Watch out for this crazy parent!”) Anyway she told me that she was about to “burst  [my] bubble,” because she just could not work out an appointment for us until February. Then I explained that I had been in contact with Sylvia (literally just minutes earlier for a few seconds, but I made it sound more in depth than that) and that I was under the impression something could be worked out. (I’m not easily turned away, not after three years of this.) So  I waited while she went back and spoke to Sylvia. Then some scheduling magic happened after Sylvia agreed to move her time around. So as of 5:15pm tonight we  have a  PT eval  for tomorrow!  Yay! Our insurance is still not worked out so it can’t be a real appointment, but this is much, much more than we had  hoped for! Plus I just  can’t describe how the timing had to be so perfect for all of this to have worked out!

So I started out my day on maybe three hours of sleep. Laelia went to bed last night at 7:00pm and screamed until 9:00pm (that’s with pain meds). Then she was up at 10:00pm. Then she was up at 3:00am. Then she was up at 5:00am when  Charley finally removed her painful straps and I  tried to get ready for work while she and her daddy  got  a couple more hours of sleep. It was the worst, tearful night last night and my brain was mushy mushy goo this morning. I was also upset when I found some blood in her sock last night. Poor kidlet.

Swollen, hurty foot with broken skin.

I spent a long time on the phone today. I was called back by one lady from Shriners this morning who was completely unhelpful. Apparently we’re not getting PT with them any time soon. This lady  kept interrupting me to the point that  I had to say, “Just let me finish my sentence!”  At one point  she (rudely) said, “You’re trying to speed up an internal  process you really don’t know anything about.” I responded, “Yes,  you’re  exactly right!” But she didn’t have a sense of humor, and when I asked about a pending prescription I had requested she practically hung up on me! My my. Anyway, not really a person I deal with like Mimi or Debbie or anyone I care about so I didn’t care much. I had too much else to do. One friend of a friend of a family member  I called this morning  was an assistant PT who suggested a doctor in Delmar who had a PT, Yoga instructor (turned out to be Pilates instructor) and chiropractor in his group. So we called them up and they had a cancellation for this afternoon! I printed all the paperwork off their website and started filling it all out while Laelia played with her duckies in her  bath. (Yes some pages  got a bit  wet.) Then we ran over there.

We saw the doctors, and while they were very interested in her (she was their youngest patient), they didn’t think they could help her. In fact their PT  couldn’t even  see her because the kind of PT they did was geared toward a different clientele and wouldn’t work on a small child.  But one guy we saw  was a  chiropractic orthopedist. (The only one in Southern California.) And he was very interested in seeing if he could improve Laelia’s life a little. He had no promises, but he was willing to try  different things and give us a discount (since this would be out of pocket). I’m very interested, but we’ll have to discuss it.  

I also had a good twenty or thirty minute conversation today with an Anat Baniel practitioner (for children) slash Feldenkrais practitioner.  Apparently another AMC mom (aka, a mom who has a child with arthrogryposis who we met in Seattle) swears by this. I’ve been watching videos of how this method helps kids with various disabilities (mostly CP), but I’m still not sure exactly how it works. According to the lady I spoke with at Moving to Learn, Inc. it does what PT doesn’t. When PT focuses on the injured limb and working with it, this would focus on everything else she can do (all her working parts)  and motivate her to move the injured limb by encouraging a whole-body approach. I’m a little resistant to their stance of getting children out of AFOs (since even though  we hate them right now, they work for arthrogryposis clubfeet), but I am tempted to give  this a try. I’m tempted to give just about anything a try. As long as this is more science than spiritual then I’m there. I definitely already  really like  the lady who we’d be seeing.

In the meantime I’m so dizzy.  The next step is to see a  chiropractor. Then an eye doctor.  I’ve already seen an ER doctor (when the vertigo was out of control), had an MRI, saw a neurologist and had two appointments with an ENT. Add all that to seeing my family doctor  too, and I’m vying for most expensive medical costs in this family. I feel so out of control with the dizziness. I almost went through a plate when I was doing dishes the other day, but realized I hadn’t actually moved.  It’s nauseating.  It starts to get  bad everyday around 11:30am and by 2:00pm  I’m miserable if I’m not lying down. Also  I’m getting headaches that accompany the dizziness.  I have a couple more leads on getting rid of it. Once I’ve exhausted those I’m not sure what I’ll do. It’s got to go away soon, right? Right?!!

So all in all I think some optimism is warranted. For the first time in a while I feel like things may just work out, even though many things (my job for example) are still up in the air.

Oh and my wonderful husband did four loads of laundry, cleaned up the living room, did the dishes, cleaned the counters and took out the trash today while I was out with Laelia. My hero! He also “made” dinner, which for him is driving to Chick-fil-A. :) Love him!

I’m also blown away by our amazing friends. They are constant encouragement and support when everything is falling apart. I have no idea how this many amazing people weasled into our lives. :) But I wouldn’t change it for anything! We’re definitely not alone, and we know it because you all tell us. Thanks for the referrals, kind words and offers of all kinds of support! It’s so appreciated!

5 Responses to “Cautious Optimism”

  1. Laura says:

    I almost couldn’t believe it when I read the first couple lines of this post that you got some PT!!! Way to go!!!!!

    Also, about ditching the AFO’s, I don’t know if this is very helpful or not, and I can only speak for my life now, not in the future, but I ditched my AFO’s (except when using my walker) in middle school (and maybe even earlier – I can’t remember for sure). I don’t have any ill side-effects and I feel so much better not wearing them. My AFO’s are not painful for me to wear, they just make my ankles really really stiff. But I really only rarely wear them and like I said, no nutso side-effects. And I can stand without my AFO’s just fine. If you disregard my awful balance hehe :-) And with her feet swelling like that? And the skin breaking? I sort of feel like maybe you should take them off and at least not have them on so much. But I have no MD before my name, so definitely ask a doctor, don’t take my word for it.

    And this may not sound great to you, but even if Laelia does not walk on her own, it is not the end of the world. It doesn’t take legs to live an awesome life. :-)

  2. Tracey says:

    Would mole skin over where the strap hits her skin help stop the skin break down?

  3. Kristin says:

    that is such great news about the PT appt even if it is only an eval :)..
    sorry to hear about the break down on her feet we’ve had the same problem with the heel.. we used some gauze and a little neosporin to heal it and also try to keep his feet out of them every so often.. maybe that would work for you.. and the mole skin might help as well as long as it’s taking some of the pressure off it may be helpful..
    I’ve also got a really I’m sure stupid question, but did anyone check to see if maybe you were diabetic? Just curious as I’ve been worried while reading your posts and I know how hard it is to not feel good and try and take care of the little one or my case little ones :)
    anyway glad to hear about you getting some good luck :)

  4. Chelsea Powell says:

    I was thinking about the strap thing the other day and was wondering if maybe a foam piece there would help like what was on her other shoes? I don’t know if that would work or not but I thought a thin piece of foam to keep the strap from putting weird pressure on the skin might help?

  5. Alexandra says:

    Hi! I think I’m the crazy AMC mom who you met in Seattle who swears by ABM (Anat Baniel method) because I met you in seattle and I do think ABM is amazing. It has helped my son out a lot especially after surgeries and I think L would really benefit from it. Its really important to find a great practioner because they make all the difference. I could help you find one in your area if you are interested, email me: alexandrabaker11@gmail.com.

    Best,
    Alexandra

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