Ow

“ow ow ow ow ow”

Everyday I give Laelia a long  massage while she relaxes. But it doesn’t make up for the fact that  these same  hands also do her painful stretches everyday too. Sometimes if Charley is feeling up to it, he will hold her down so I can stretch her while she writhes, arches her back and screams. We’re suppose to do these stretches  several times a day, but we only do the bad ones once a day.  I don’t think she would trust us to touch her if we  tortured her multiple times a day.

Laelia begs for cuddles all the time now, but instead of making me feel like a loving parent, I feel like an abusive one. I hurt her and then I comfort her. I hate arthrogryposis. I hate it. *cry*

Right now she’s crying and begging us to take off her straps. “Please Mama, take the  strap off! It huuuuuuuuuuuuuurts! Right here! Please, take strap off!”

This has nothing to do with her surgery either. This is normal treatment for her club feet and joints. After getting her casts off she got new AFOs (ankle foot orthotics, aka “shoes”) in her favorite color. But her shoes always hurt her. The straps always hurt her. Putting the tight shoes on hurt her. Taking them off her hurt. Sometimes she’ll cry when we look at her feet for too long. Red is also the color of pain.  They’re not even  on as tightly as they should be because neither of us can stand her painful cries, but they STILL hurt her! And I know the different between whiny and pained. She’s not just being bratty, in fact I’m pretty sure she’s the best behaved child in the world. She just  hurts.

 

Anyway, it just sucks. Not terrible. Not life-threatening. Just normal life with arthrogryposis. Another week and she should have adjusted more to the shoes, and then we’ll try to tighten them up more after that.

Oh and I’m still falling over. The vertigo that’s lasted almost five months now  has morphed into a constant dizziness with sudden spells that are pretty distracting. I’m still functional, but miserable.  My MRI was normal and I was almost disappointed I didn’t have the brain tumor they thought I might  have. Not that I want that, at all, but I want an answer and I want relief. This dizziness causes constant nausea. And I’ve fallen over and lost my vision when doing Lali’s stretches. Not cool.

On the plus side, I got a massage yesterday. I had two really bad dizzy spells right before and a few more after, but during the massage was pure bliss. So relaxing! I haven’t done that for years! I always worry about “pampering” myself when my time and money can go to better things, but this was worth it. I did all my daughter’s stretches and then put her down for a nap with Daddy. I was back “mommying” before she even missed me! I love Groupon. This massage was 60% off with my Groupon! :) (Now I’m a Groupon advertisement. God bless Groupon. Hehe. :))

Since having her legs repositioned, Laelia has had to relearn how to do many things she has done before like sitting up, scooting and going down the stairs. Today she went down the stairs on her bottom  for the first time in two months! Also today Laelia scooted up to me  (more slowly than before)  and said, “Mama, I has to do my stretches now, huh.” It wasn’t a question. I asked if she was ready and she said, “Stretches make me sad and they  help me.”   Then she asked, “Just not hard? Kay?” Then she squeezed her eyes shut. Just about stabbed me through the heart. She hurts, but she understands why she hurts. Not everyone is so lucky.

For example, Jared doesn’t know why he hurts when he’s having his episodes. Jared has arthrogryposis like Laelia, but also hydrocephalus and other concerns. He’s having seizures and scaring his poor parents who are helpless to do anything for him (and believe me they’ve  tried  everything). He needs more  medical treatment, but it’s ridiculously expensive and requires a commute. So his big sister, Braylynne  (age 6), is making bracelets to pay for medical costs and travel. They’re only $5 each. Just click on the link below.

http://www.jareds-hope.net/blog/?p=212

Or if you ever want to help them out, you can pass  anything to me and I’ll get it to them. Since paying off our medical  bills most recently and  not being able to go to therapy because of insurance drama, and not having to go back to Philadelphia for six months (glee!), we’re doing okay.  But they need to get their baby boy to the Hope Center in Philadelphia and  have a hard road ahead. Or if you don’t need a bracelet and just want to help, go here. But the bracelets are super cool! If you don’t want it, Laelia would love it! :) I can give her one after every painful stretch. Let’s cover her up like the Michelin Man.  :)

Having your kids in pain, no matter the severity, sucks. Thanks for letting me vent. Laelia’s life is a happy one and I hope to return to our regular uplifting blogs ASAP! :) I hope the next blog will be about how we miraculously are getting the physical therapy Laelia desperately needs!   *crossing fingers*  

4 Responses to “Ow”

  1. tam says:

    alexis, have you gone to a DO doctor instead of an MD? for your vertigo I mean. they perhaps could help you.

  2. Tracey says:

    Did our favorite doctor in Philly get out his sharpie, pull the dorsiflexion straps until Laelia was red in the face and then mark where the D ring is so you know to tighten them until you reach that mark? Yeah I hate that Sharpie :-D He made me scream one time while marking my ankle strap. I can handle my pain w/o needing to verbalize it but that I yelped w/o even thinking about it. I sooo hope Laelia adjust to her knew braces soon!

  3. Robin Clark says:

    Alexis, I had my first bout with vertigo/nausea about a month before our wedding (almost 30 years ago!). I even had a spinal tap, thinking that I might have had menningitis. In the long run, it seems that I either have/had Mennire’s (sp). I also have tinnitus–ringing in the ears, but it isn’t constant or severe. The last doctor I went to was an ear, nose, throat. I really FEEL for you, because I don’t think I ever had it as severely as you do.

    I am calling a friend today who lives in Poway who is/was a PT aide to explain your situation and see if she knows anyone who would be helpful. I did email her but I guess she isn’t checking them.

  4. Markie says:

    RE: vertigo, my poor mom has that and is getting help with it. she has had all the test done and found a way to get rid of it. if you email me I can give you her number. Best of Luck! Markie8611@aol.com

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