Busy!

Kisses and secrets!

Can I have some?

Pictures of  the going away lunch for Adam and Chelsea as they head to Tanzania in twelve days.

We’ve been super busy lately. I had a frustrating experience today with Children’s Hospital and their scheduler. Charley and I  both. Ugh. They may call back tomorrow. So moving on.

Today I called CCS to ask how things were going. I think my contact forgot that she was suppose to call me, because she sounded surprised to hear from me. Evidentally she had forwarded our packet to San Diego South’s Medical Therapy Unit. So I got their number and  left a message on  their weird answering machine that didn’t have a greeting. Feeling weird about that, I called back later and got someone who asked if I was getting services for a tramatic event. (Oh those poor babies!) I told her  that Lali had been diagnosed at birth. She was surprised that we hadn’t done orientation yet so she said they would call me back tomorrow and set up an orientation. Then she mentioned that if it was more urgent (like a tramatic event) they’d also try to work out an evaluation. I quickly mentioned we had had surgery and gotten casts off on January 7th  and she said, “Oh! She had surgery? When?! Well we need to move faster! Let’s do the eval the same day.” Finally! I’m just relieved to be moving forward with an actual person who knows our situation!

I seriously don’t know how shy parents get these services. I feel like I’ve had to hassle every single person in this organization so far. I mean, I’m a nice bully. :)  I’m sure they didn’t set up this system to make  parents in hard situations  have to  go through this much hassle to help their children.

Today we also went to Laelia’s second ever chiropractor appointment. It’s so wonderful. She loves it so much! She tells  the doctor  when something feels good, and it all feels good. I set her on the table and she immediately laid down on her tummy,  put her head down and took a deep breath. So cute! Plus the doctor tells me she is the smartest, most well-behaved kid he’s ever seen. Love it!

Today I also contacted Laelia’s pediatrician’s office to get a referral to Johnson Orthopedic. It’s slow going, but eventually we may get this AFO fixed.  I followed  up with CPMG after we’d gotten home today and they were closed. Grrrr. I really hope between my work schedule, Laelia’s school schedule, doing a CCS orientation and evaluation and working this out  with insurance  that we can fit in an orthopedic trip tomorrow. I think it’s wishful thinking.  Wednesday we have a PT coming to our home  who is paid  out of pocket (as opposed to  going through  insurance) so we don’t cheat CCS.  I’m hoping she’ll give us a few more ideas that we can do at home! I’m thrilled that she’s coming to us!  Thursday we have an occupational therapy appointment with the best hand therapist in the world, Jill Peck-Murray, to get Laelia’s splints adjusted. Friday we have another chiropractor appointment and also my dad and Christina are coming to  visit! Then after a weekend of fun with them, we’re all going to Disneyland on Monday!

I really need to clean. No time.

Tonight Laelia’s stretches were easier. Maybe it’s the fact that I do them every hour or so  instead of once a day now.  Laelia was even able to count down the 30 seconds out loud with me instead of just  screaming the whole time. It’s just very nice.  

We also have the dorsilflection straps on her left AFO up to the line! That means it’s on correctly! Twenty-four days after we got them and  I have one stupid shoe on correctly. Hurrah!  :)

Okay the correct AFO lasted exactly 19 minutes. She just screamed her head off and it’s far enough past her bedtime that I loosened it. Still, we’re  getting there.

My throat is still sore and my back hurts, but I’m doing much better physically. My vertigo episodes are down to maybe two a day and that’s it. Also Laelia’s  sore (crater)  looks better I think. It doesn’t bleed as much so I think that means it’s closing up.

Our new rule about only watching cartoons while actively weight bearing is working beautifully. I’m thrilled with this. Laelia will even tell me, “Mama you need to pause Blues Clues. I need a break.” :) But while waiting for the chiropractor there was a television playing and Laelia had to point that out while grinning like she was cheating the system. :)

So things are better. Now I need some sleep.

4 Responses to “Busy!”

  1. Laura says:

    It sounds like things are maybe possibly thinking about slightly pointing up again! Yay!! Reading your blogs and seeing what craziness you are enduring makes me wonder how my mom managed it with me being the youngest of 4 children, all under 5 at first. Maybe when you get down, you can remind yourself that you don’t have 3 other kids to take care of too. ;) Just hang on tight, because if life wasn’t an epic rollercoaster, who’d ride? :)

  2. Robin Clark says:

    It sounds like CCS is as hard to deal with as the In Home Support Unit of the Dept. of Health Services! I’ve called them for people on my case load whose child needs nursing card and I wonder if anyone really gets served by them. I’m ecstatic for you all that it sounds as if CCS is finally getting on board!

    The chiropractor–is that the one in Del Mar? My friend, Debbie (the PT aide) is the one who recommended him. I’ll let her know how much he is helping.

    Will keep praying for all of you.

  3. Kristin says:

    Yes you have to be a bully. ALL.THE.TIME. It sucks. But it gets the squeaky wheel moving in the direction you need. Give Lealia love, and hugs from Emma, Jenna and I.

    Hang in there momma!

  4. Kristin says:

    I’m so glad things are starting to look up :)

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