Thursday, January 3, 2013

Pink Eye and Great News!

Ha, that's an oxymoron title hey?
Well the obvious part is that someone has Pink Eye, well, two pink eyes. Mr Brady has contracted the fabulous little infection. He's on antibiotic eye drops, so hopefully it will start to clear up soon. We just HOPE no one else in the house gets it, so there's tons of hand washing, separate baths for the boys and just all around paranoia that all our eyes hurt/itch/burn/etc. Ha! Gotta love weeks like that!

The good news is that I got good mail! I received Jax's genetic test results and EVERYTHING came back normal - woot woot! I didn't receive Brady's yet, but I'm sure it's safe to assume his will come back with the same. While they weren't tested for EVERY single possibility, it's a large enough array to assume that their development issues are due to their mono/mono twinning stunting their growth and causing their delays. We're still on the journey of figuring out exactly what their speech and language issues are, as well if there are any structural issues with their soft palates, but we should have answers to all of this within a month! The reason this excites us so much is because it gives so much hope that whatever the hurdle is (speaking, language, eating, growing, asthma, development delays), it most likely can be worked through and there's no fear of something else progressively happening. (Like finding out they have xyz and that means that a certain organ will fail later etc etc).

The other great news is that I received an approval letter for Jax's Medicaid for 2013 - already! I just sent in the paperwork a few weeks ago and it typically take 3 months to get an answer, I'm shocked! Of course we wish Jax didn't qualify for it (it's for children deemed medically disabled in WI with a medical and developmental need, and they would require nursing staff for daily care), but since he does still have those needs, it's nice to lessen the financial burden. It really helps with things like therapy (OT, PT, Speech, Feeding), orthopedic braces, medical supplies for his tube feedings and lung disease, medication, hospitalizations, ambulances and of course the continuous doctor and specialists appointments. The Katie Beckett Program has been our angel throughout this journey so far.

I feel like 2012 was the year of PAPERWORK for me regarding the kids. I had forms/small books for Medicaid, Brady's health insurance (we purchase it through the state), Genetics Clinic, Endocrinology Clinic, Feeding Clinic, Child Development Center, ENT Clinic, Urology Clinic, 3 hospitalization intakes/discharges,  an ER intake with Ortho followup, both kid's preschool intakes with ALL their medical files and this and that needing doctor's signatures - and then the more simple 1-2 page forms for eye checkup, dental checkup and hearing checkup. I'm waiting for the Cleft Palate Team paperwork to come in, but I have a feeling that it will be a lot LESS paperwork overall in 2013!!

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