And yet life goes on

     

I’m making my sick mommy feel all better.

My auntie came all the way from Idaho to see my new KFOs!

My new dresser is finally built!

Wow, what an incredibly busy last few days! Thanks for  all the advice and ideas  and encouragement and help and contacts and prayers and everything! We have an SSI interview set up for Friday, an iHSS application on the way, a denial coming from insurance that we can show two advocates our insurance showed us, a Department of Health Services application and a few other long shots yet to try. We are expecting denials for most of these, but  getting those denials in writing helps us build a case when we complain to the Department of Health.  THIS IS SO CRAZY!!!

And I would have missed it  if not for some emails, but Laelia turned six months old  Thursday! Yippie!

My milk is almost completely gone; I get about  three ounces in a 24 hour period. It happened because of sickness,  not eating enough  and stress on my body.  With nursing out of our routine, little Laelie is having trouble going down for the night. It is reminiscent of her first weeks of life. I’ll jolt awake hearing her cries, only to realize that they  are only  in my head half the time. Her system is also adjusting to the formula, but  she’s still a little constipated. It’s weird when her tummy bothers her since it never has before and I find myself in a panicked scramble to take off all her gear (braces and splints) thinking they are  the culprit, only to have to put them all back on again.  

We also  finally got our KFOs! We use them four hours a day and the braces the rest of the time, including nights. We need the right KFO  adjusted since her leg is shorter on that side because of how the AMC pulls her leg up. I called to get that done, but the doctor was out of the office–hopefully in the next few days. Our orthopedic doctor had a death in the family (which how can I help but not totally understand)  so our appointment with him for an evaluation for her KFOs won’t be until April 24th! We are also trying to get AFOs (Ankle Foot Orthotics instead of her Knee Foot Orthotics she has now)  to straighten out her mid foot breakdown in preparation for surgery. According to Scope, the braces help with club feet, but the AFOs really help for arthrogryposis-related club foot. No one told us this! Thankfully she was casted for AFOs the same day they were mentioned. I LOVE THAT! Now we just need to run it by our orthotics doctor and get that auth. I also have a contact now for Laelie’s insurance who I can bug when these things need authorized. It gets done in half the time, but I’m working on getting it  done even faster. I am determined to be the squeakiest wheel!

Laelia’s aunt Linda came down for her spring break from college  on Friday. What would have been incredibly bad timing (after Charley and I got the rejection by Regional Center, I got sick, we ran out of hope, scrambled for options and were at each other’s throats…), but  it turned out to be great. I came home to Linda cleaning my apartment… and she hasn’t stopped since! It looks livable again especially upstairs. After a Linda-made dinner tonight, I’m not looking forward to her leaving tomorrow. I’m trying to figure out how to hire her full time. :) Linda and Charley finished building the dresser that the ladies at Fellowship of SD got her. They have been complaining of random pains ever since. My fingers hurt, my back hurts, my  spleen hurts… It looks wonderful though!

We are indeed flying to northern California this Friday (right after our SSI appointment) for Gram’s funeral. We made the plans  after grandma Wynema  sent me some birthday money for the flights.  (When you’re turning 26 and your grandma is still sending birthday money, you’re most definitely spoiled. :)) Baby will be in tow. It’s depressing to think about all the incredible women that will not be apart of her life: Joy (Mom), Louise (Gram), Lucy (Grandma). It’s a tragedy since I know  they would have adored her and  fought for her  like they would have for me, like I am for her. Now I’m alone and unable to replace all of them in her life, but more than that, I have this incredible responsibility to take all they have given me and supply that  for my daughter. That is a responsibility that weighs on me heavily at times. She’s the apex of a legacy of strong women. And the culmination of love that has spanned generations.      

 

Laelia’s Grandma Joy and Grandma Lucy. In memory.

Also  proof  that I am capable of growing hair… eventually.

One Response to “And yet life goes on”

  1. Robin Clark says:

    Hi Wesleys,
    I sent a quiry to the gal who approves all of the Medicaid Waivers in Sacramento. She suggested that you contact (which may be in your plans) to contact Home Operations with the Department of Health to be evaluated for a Nursing Waiver.

    I am praying that you’ll find a way to get the MediCal soon.

    Another suggestion from our EI in Placerville was to find a small family day care that you’re comfortable with and have the physical therapist train the caregiver in Laelia’s stretches, etc. The big hang up it sounds like with getting the Waiver in the EI stage is “knowing” if the child will be eligible past age 3.

    Blessings,
    Robin Clark

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