When Plans Don’t Work Out

Well we ended Monday with the expectation that Tuesday would bring our long-awaited physical therapy with CCS and a visit with the orthopedic office to get Laelia’s painful shoe adjusted. Well none of that worked out. CCS gave us bum information. They said we’d be seen Tuesday and I said I’d clear my schedule to accommodate that, but what they meant is that the therapist would  call us on Tuesday. I thought I’d clarified that and when a phone call was mentioned I assumed that it was to tell us what time to come over. Well that would have been the fastest CCS  had ever moved, so obviously it wasn’t going to happen. The lady I spoke with made it sound like it would be happening, but she was either confused or we didn’t communicate. (Because apparently I clear my entire busy schedule for a phone call?)  When the therapist called she didn’t know I’d been told that, wasn’t prepared to see us on Tuesday and didn’t know our urgency or that we had to do orientation and evaluation on the same day instead of a week or more apart. It was frustrating, but we did manage to get an appointment this Friday. Orientation will consist of me watching a dumb video. DUMB! Okay I’ll try not to judge too much before I actually go. :)

The only problem with Friday  is that my dad and Christina, who I haven’t seen in too long, have planned a short three day trip starting Friday to drive the ten hours south to see us. So now I’m dragging them to CCS and then to a chiropractic appointment instead of hanging out and having fun. Oh well.

I have a couple friends going through the same ordeal with CCS. One of my fellow  AMC moms can’t get CCS to call her back and couldn’t for the longest time figure out if they had even received her application! They should call it CCSucks. Har har, I’m so funny. :)  

As for getting the shoe fixed, we did get the auth from our insurance on Tuesday (love having a case manager again!), but when we called to make the appointment we found out there had been a death in the orthpedicist’s family. (Johnson Orthopedic is a great, family-owned business.) So we had to figure out if we should wait  for excellent AFO repair, or attempt to take care of this with someone else. I just hate to take away business from a great company and risk poor workmanship with a new company. My daughter’s feet have been through enough.

In the mean time  she’s still wearing the old AFO that doesn’t stretch her foot. And I’m  manually stretching her foot every hour starting at 1pm when I get home from work. Not fun.

So none of our plans worked out on Tuesday. But on the up side,  I did have free time for the first time in forever. I got to hang out with Chelsea. I didn’t have to rush through PT at home.  I got to look at places to move. We put a new offer in on a  foreclosed  house that’s owned by the government that night. *fingers crossed* I’m also looking at Condos and apartments too. I just really wish I could take all the stairs out of my apartment and move it to a better  street and that would be perfect.

Yesterday (Wednesday) we had a private, out-of-pocket PT come to our home. She’s filling in until CCS and Children’s can get us a stinkin’ PT appointment. It was pretty wonderful. Her name is Michele and she was great with Laelia. And Lali pretty much showed off all her abilities and learned a new one: making a tiny “bridge” with her little hips! Michele does yoga poses/stretches and does the voices for her stuffed animal friends  so she’s  great. :)

After Michele left, Laelia begged to do more PT! I was floored! I told her it was nap time, but she begged and pleaded. So  I got out the iPod Touch, jumped on You Tube and found every 10-30 second video  of every baby animal I could think of. The only rule, like with TV, is that she has to be weight bearing to watch a video. So she did a push up  through every video! I think she did  thirty small push ups all together! So I fed her a  peanut butter sandwich for protein and we went right back to it! By the end she was shaking, but all I had to  say was, “Ooh!  Here’s a video of a cute baby elephant! Or panda. Or mole rat!”  and she’d be doing another push up and begging for the video. Around 5:45pm she was  wobbly and fussy so I decided we’d done enough. She asked for a hug and when I pulled her into my arms she fell asleep! The fastest I’ve ever seen!  So  I lowered myself gently to the couch and shut my eyes. My husband got home to this scene:

The camera flash woke me up but not Lali. It took some doing to wake her up. Then her daddy carried her straight up to bed (no straps, oh well) and she slept a good, long while. :) I think I worked my baby a little too hard! :)


Today we went to OT (occupational therapy) and got Laelia’s splints fixed and adjusted. It was long overdue.  Actually when I was getting Laelia from preschool to take her to the OT appointment, the principal stopped me to show me a  paper with  my  Philadelphia doctor’s notes on it. It was a prescription to weight bear.  The school PT consultant said they needed that prescription to weight bear in order to get permission to borrow the gait trainer for the classroom. Well the principal wanted to know if she could ignore it! “We’re not going to do this, ‘…two times per day weight bearing…’ stuff. You do that at home right? Do I have your permission to ignore it?” I said I didn’t have time to talk (even though I had already said that but still ended up reading the whole paper), and ran out the door (late)  just feeling bad about it. I mean I want the teacher to have freedom in her classroom, and I want it to be easy on everyone. But I don’t want this attitude up front. It made me want to change my stance and make them do it! It would be wonderful if they stuck her knees  on that pillow she uses for nap time and she could be on her knees for story time or whatever. How hard is that? She has so much therapy… I would love the help! I just kinda felt ambushed. So later on when I’m in the OT parking lot and I get another call from the school, only this time from the immersion teacher about something totally out of left field (my husband had asked the bus driver how Lali was doing pain-wise on the bus, he said he’d tell her aide that Lali was in pain, okay thanks, then it became a “communication” error on our part since we need to address the aide directly, but we weren’t really talking to the aide nor did we know the bus driver talking to her was a bad thing, so now we need  a special book to be kept in Lali’s backpack for when we want to ask them questions, blah blah blah)… it just destroyed whatever emotional reserves I had left. I had already left work that day ten minutes late because of something stupid… now I’m late for OT… now I’m just angry. Charley too, which is rare.  Not good anger either. Awful, impotent, bitter anger.

So tonight I’m just tired, in back pain and I’m angry. Hopefully Dad and Christina can come tomorrow and give me a much-needed break. CCS is also tomorrow. Fine. Let’s do this.

5 Responses to “When Plans Don’t Work Out”

  1. Tweets that mention Laelia Sky » Blog Archive » When Plans Don’t Work Out -- Topsy.com says:

    [...] This post was mentioned on Twitter by James Oliver, South Florida Rehab. South Florida Rehab said: http://bit.ly/dh18RK Laelia Sky » Blog Archive » When Plans Don't Work Out: Today we went to OT (occupational th… http://bit.ly/i2AGr0 [...]

  2. Kristin says:

    blech blech blech…I have nothing nice to say, just mouth vomit. It just angers me what you have had to go through just to get what your sweet little girl needs. Our girls should get all services up front, we should not have to fight with anyone to get basic necessities. For our kids this specialized care is just like food and water. Hope today isn’t a total waste of time, and that you are able to enjoy your family. Hugs and lots of love to you!

  3. Anonymous says:

    what happened to Laelia’s splint? It seems my kids are doing ok with the straps except Ben’s ankle on one absolutely can NOT be that tight. it is clearly breaking down. and it looks like on one of them that the bendy part where it bends when you use dorsi straps looks stressed(the afo not the foot) thinking of you guys. we got a bit of a blow at our appt. I thought it was just a given that we would straighten her legs with fixators. I just didnt know when. sometime after the osteotomies. but now he said after osteotomies we will have to see if she can motor on her knees before they will consider if they should straighten her. You never met another kid who wants it so bad(except maybe Laelia!) and we keep hitting these walls saying she cant or maybe she cant so we shouldnt. why shouldnt we try? why shouldnt we give her every single opportunity? oops sorry. this was supposed to be a poor Laelia and poor Alexis I hope things impove post. so I better shut up now! thinking of you. miss you guys!

  4. tammy says:

    blargh! i posted and it disappeared!

  5. Kristin says:

    I just wanted to say that the new heading is sooooo super cute.. it looks like what laelia would look like as a cartoon I think :).. sorry you’re having trouble with all these people :(

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