January to January

As a New Year’s exercise I decided to see how far we’d come  in a year. Last January we had just had Laelia’s casts removed after the biggest surgery of her life. And her legs were in the correct position for the first time in her life. This was the surgery I’d heard about from two doctors (one in San Diego and one in Seattle) but they refused to do it for my daughter because to quote them both, “Let’s get  her in the best position for sitting in her wheelchair.” (From now on I’m going to respond to that with, “Let’s get your face in the best position for smacking.”) So we flew to Philadelphia to the “AMC doctor” (Harold van Bosse)  after many people referred us there. We got the surgery done, and it was successful in turning her legs the right direction. But  going for our follow up appointment in January was a life-changer.

There were  eight crazy things going on in our lives last year.

1. It was vital for Laelia to get  more therapy to maximize the  surgery results. Every time we went to Children’s hospital it was an  $80  visit. Our insurance had changed  so I lost my patient advocate/case manager. I started the months-long process of setting up California Children’s Services for free  OT and PT through their medical therapy unit. This meant I had to cut  ties to our expert OT and PT to do it as they would not allow her to see them  at all if we got into the  program.  It took  some paperwork and lots of hassle to prove Laelia had arthrogryposis even though one  glance will tell you she does.  I was told I did not qualify. Then another person said I did and to try again. I needed a doctor’s referral, but  the nurse   said I was stealing therapy from other poor children who this program was set up for. I miserably asked for it anyway.

2. Laelia’s feet were swelling and it was so hard to deal with the painful shoes. We thought Laelia’s foot was broken. She didn’t sleep through the night. Eventually the shoes cut a hole in her foot and it got infected. She was on antibiotics and the ulcer was hideous.

3. I was suffering from debilitating dizzy spells. I went to  several doctors, got an MRI and got my ears checked. Nothing. One vertigo attack (I’d call it a “spell” but that seems too mild)  was so  bad it sent me to the emergency room.

4. It became clear that I needed to stay home and do Laelia’s therapy full time if I wanted to get her walking. It was clear I would have to quit  my job but we couldn’t afford to.

5. We were carrying Laelia up several flights of stairs to get to  the front door of our apartment. (There were four sets of stairs from the parking lot down below, eight sets to reach the street above and our mailbox, and one long set of stairs to reach the bathroom once inside our apartment. This was not wheelchair friendly to say the least.)  Between our parking lot and our  front door  was a gate. I would go prop it open with a rock, go back to the car to get my daughter, and carrying her with  both my arms in a full lower body cast I would reach the gate to discover the manager had closed it and thrown the rock over the fence. He said he didn’t care why I was propping the gate open, propping it was against the rules. If I quit my job to stay home and do my daughter’s therapy we would not be able to afford to move outta here.

6. We were having major problems with discrimination at  Head Start on Home Ave in San Diego where my daughter did preschool. Even though it was government funded and had services for special needs children,  it was hard to work with the director.  The teachers were wonderful, but the director was not. They kicked  my daughter  out of school after she had surgery. The director said it was too much on her staff and complained that Laelia came back in a wheelchair and was sore. She complained my daughter  could not walk and was hard on them.  She finally put her hand on her hip, cocked her head and  said to  me, “Just tell me what you expect from us? What do you want us to do for you?” I had not asked for anything at this  point. It was an attack. I hated entering that building and was stressed out every time I picked my daughter up from school.

7. My daughter couldn’t  walk.

8. We found a little boy on an adoption website who looked just like our daughter. We started advocating for him. We were far from being able to care for another child, but I hurt for his situation. For all the hardships that were  going on  (our lives felt like they were falling apart), they paled in comparison to what he was  going through and what he faced.

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Step into the New Year!

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1. After a couple months we got CCS services set up. We have seen them twice a week for the last year. It’s free. We qualified for their MTU (medical therapy unit) based solely on Laelia’s diagnosis. (Which is why it had to be officially verified which took forever.) CCS also has  other programs and services for low  income children which we were not asking for. This explains why I was told we did not qualify and was harassed about stealing services from poor children.  Despite the hardships to get into the  MTU, it’s been a great experience and  Laelia has THRIVED!

2. Laelia got used to her shoes. Her feet are beautiful and straight. You can still see the faint red  circle of where her ulcer was, but it’s pain free. She started wearing KAFOs too and tolerates them. Every now and again she’ll have foot pain issues, but they’re nothing major.

3. I had one vertigo spell during  Laelia’s November pin removal  surgery and it surprised me because I had not had one in months! I haven’t felt one since.

4. My company gave me a work from home position. I have a routine where I do all of Laelia’s therapies at home and go to all her school/community meetings around my work schedule.

5. A lot of miracles worked out and we moved into our new home last April. A missionary team helped scrub it out. Volunteers from a local church put in a wheelchair ramp. My dad built a shower and installed a light switch and door mechanism that Laelia can use herself. We furnished the entire place for under $800 with used stuff and hand-me-downs. It’s huge and it’s beautiful. It’s home.

6. Laelia was the last special needs student that darn  school ever saw. The special needs program pulled out of there because, well, we all know why. We moved Laelia to the Head Start program off Balboa Ave. It’s been WONDERFUL.

7. My daughter now walks without a walker or crutches. She walks. Our jaws just dropped when she took her first tiny shuffle steps in August. Then a couple months later she had a walking party to celebrate. Then a couple months after that she turned away from me and walked off without a walker or crutches. My child walks.

8. He was our son. We’re adopting him. But without the top seven miracles working out we would not be in a position to rescue him.

Wow, what God has done for us in one year is amazing. It’s incredible. And it’s a ton. And it’s exciting because I get to see a bit of what had to work out, all the things that had to get better, for us to bring another child with arthrogryposis home. The pokes were painful, but the  needlework is beautiful.

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