Limb Connections

   After a bit of whining and moaning Amaya fell asleep and stayed asleep for the entire night last night. That's the first time in weeks! Almost a month actually. Tonight she feel asleep easily. I was rubbing her head and hair and she fell asleep. It's the first time in months that I haven't had to rub her foot or knee to help her fall asleep. I'm not sure if its the long tape that's doing it or something else, but I'm very grateful and happy.
    This morning Amaya decided to take her wheelchair to school because she was a bit tired from all the walking she did yesterday. When I picked her up she told me that she didn't end up using it very much after all. I think she's enjoying walking more. And she knows that it helps strengthen her bone, which means the fixator comes off sooner. And getting it off sooner is a goal of hers.
   This morning I received a call from a woman at Loma Linda asking if Amaya was seen yesterday at her appointment. I said yes, and the woman said that was all she needed to know. As soon as I hung up I got a call from Marilou, our referral coordinator at Beaver. She also asked if Amaya was seen yesterday. I told her that we were and mentioned the other woman's call. I thought this was all a bit strange. Marilou said that they told her we weren't seen and that they didn't have an authorization in place to see Amaya yesterday. Marilou said she gave the woman an earful; explaining how frustrating it has been to make sure forms are sent over and processed, having to resend forms, etc. She wanted to make sure that Amaya was taken care off and seen. Marilou has been wonderful at getting Amaya's referrals processed quickly and efficiently. She usually sends me an email, and faxes over the documentation to make sure all ends are covered. She continually gives Amaya excellent service. We are so thankful and fortunate to have her on our side advocating for Amaya.
    Today Lidie and I ran some errands. It was so much faster with only her. I'm sure any parent will tell you that its faster to run errands with one child opposed to two. But its even harder with Amaya. We have to get a wheelchair in and out of the car, maneuver through people who seem to be blind to us, and deal with any pain or discomfort she may have. If she decides to walk its at a slower pace which takes longer, tires her and makes keeping up with Lidie tricky. I try not to do too much when I have Amaya so that she isn't too worn out. It was nice to be able to catch up on some stuff that needed to be done. When living with a fixator some things get pushed aside, or neglected. I've noticed that since we've had the fixator we do what needs to be done, but don't have much energy or motivation for other stuff. We've neglected some stuff and I'm sure some people as well. But, we're hoping they understand. I guess that's just part of living in survival mode.
   Over the weekend another PossAbilities member told me about a group called The Limb Connections. I wrote an email over the weekend asking about the group and if this was something that Amaya would benefit from or if they could direct me to another group. The president of the group wrote me back yesterday saying that the group would be great for Amaya. She said their are several PFFD children in the group and it would be great for them to meet. The group is only a year old and serves to support children with limb deficiencies or limb loss. It gives families and children a chance to connect, network and offer support. I'm excited for Amaya to meet other kids, and for us to meet other parents. It's always nice having the support and friendship of parents in similar situations. I'm so thankful for the connections and friends that we've been making thru PossAbilities and all the doors that its opening for us. I'll keep you posted with her involvement in the group.
     Thanks again for all your kind encouraging words.
**I was just going to get into bed and saw Amaya's bar on my nightstand. We forgot to lock in her bar tonight. My immediate reaction was "aw,crap." I know Dr.Nelson said it wasn't the biggest deal if we miss a night, but I hate doing that. I guess that makes sense why her knee didn't hurt before bed. Well, hopefully she'll get a good nights rest; she certainly deserves it. Since she started getting homework this week, we've been  trying to get all that done in addition to her nightly routine for bed (removing the gauze, cleaning her pins, showering, putting new gauze on, stretches, taking pain medication, locking bar in, etc.). We'll have to start a bit earlier to get it all done; she's been doing her twenty minutes of reading in bed, then locking in her bar. I'm sure in time we'll get a system and routine down.