March 9th 2010

9 Mar

First off, I have to apologize for being an absolute terrible blogger. I know there are many of you who enjoy reading up on Makoa’s progress and I haven’t done a very good job of keeping up. It’s not so much that I haven’t wanted too, but I have been extremely busy at work this past couple of weeks preparing for a new brand launch. On top of that, my Dad and Kathy were in town to meet Makoa for the first time, and we even celebrated Kaialani’s 6th birthday! Well… enough about my blogging transgressions, on to our sweet little man.

Quite a lot has happened with Makoa since we last checked in. He now weighs-in at 7lbs 15oz and is really starting to pack-it-on. He has another doctors appointment this week and we’re hopeful that he will eclipse the 8lb mark. He’s started to do some really fun things like pick his head up and roll his body-weight from side-to-side. His progress makes us SO hopeful for our future together, there aren’t even words to describe it.

There have of course been challenges along the way. Most have surrounded insurance and the constant battles we have to fight in order to get Makoa seen by the doctors that can effectively treat his condition. So far, the insurance has denied every single referral and claim we’ve made. I really wonder what we pay for? My son has a rare syndrome and needs specialists who are familiar with Prader Willi Syndrome. This isn’t allergies or the flu, don’t try and send me to obscure doctors who know nothing about PWS. It isn’t acceptable and I can tell you right now that we won’t stand for anything but the best.

We are hoping that the insurance will start reimbursing us for some of the things we’ve had to pay for. Makoa has already seen the top Pediatric Endocrinologist in LA specializing in PWS and we’ve started him on growth hormones. The shots we give him are daily and he will take them for the rest-of-his-life. We had someone from the drug company come out and teach our family how to administer the shot to Makoa. It doesn’t hurt him, but it does emotionally scar Mom and Dad having to puncture his leg every night. I suppose in time we will get us to it.

Even though I’m slammed at work, I’m really going to try and keep blogging as much as I can. Tiffany is still apprehensive about writing on here, but I’m sure if enough of you bug her she might hop on here and write a post every-so-often. Until then, here are some videos from the past couple of weeks… I think we’re about four practices away from the family Von-Trapp. Ha!

5 Responses to “March 9th 2010”

  1. The Kalama Ohana 10. Mar, 2010 at 12:21 am #

    In the words of Lindsey Breeden…AWESOME!! That’s the best word to descirbe your blessings…the love shines through all of your kids!

  2. Aimee 10. Mar, 2010 at 3:31 pm #

    Glad to see the kids in action! I love the singing, what sweet family.
    Linds don’t be so hard on yourself about not posting, we know you are busy! Thanks for the update!

  3. BOB AND MIKIE 11. Mar, 2010 at 7:53 am #


  4. Brenda, Ashley, Anna Cote 12. Mar, 2010 at 5:53 am #

    Thanks for all the updates, Your right Laurie, Hilarious!! Great job with the singing!!

  5. BOB AND MIKIE 17. Mar, 2010 at 5:05 pm #

    So you get us hooked on the Days of Makoas Life” and then you go off the air…. Need a post, it’s been too long.. love you all

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