Author: Kate Anderson

Gavin: 1; Insurance: 0

After two internal appeals, working with Office of the Healthcare Advocate, pulling numerous support letters and studies, a request for an external review, and 10 months later: Gavin won!! The external review committee found in his favor and reversed the insurance company’s decision to deny coverage for his stander. (For the full backstory on this see my post from September.)   We are SUPER excited and can’t wait for the official word to trickle down to the folks who process this info at the insurance company so we can get his stander ordered! Once the order is in –...

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When Good News Feels Like Bad News

Earlier this month Gavin had his second sleep study done.  Since my husband took him to the first one last year we thought it best if I take him this time. The first sleep study results just didn’t seem to jive with what we were seeing or hearing at night so we decided to get a second opinion. Yesterday we went back to get the results of said sleep study. The first thing the doctor did was give us a rundown of the process, what they look for, how they measure and the parameters set around the data collected. He then proceeds to tell us that they were able to collect a great data set – 6 hours in fact! Which led to my first question – were we even at the same sleep study?! Gavin was up every hour on the hour – sometimes 2-3 times! The doctor said that while continuous sleep is great, they were able to string together the 6 hours from the time we were there. The doctor then starts to get into the details. About half way through the results my husband and I did one of those sideways glances. We both realized at the same time, “Well crap, this is GOOD news!” Let me back up for a minute. For the last year and half or so Gavin hasn’t slept well (hence...

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Not Your Mother’s Botox!

An amazing thing happens when a special needs child turns 2 (at least in our experience). It seems as if all kinds of new treatment options come into play. Since we started Gavin on valium almost a year ago, we have been continually thinking about adding another “tool” to his ever-growing box of resources.  (This “tool” was not something that we could have added prior to him turning 2.) As with the valium, the idea of giving our now 2-year-old another “medication” was not something we took lightly. But we had to weigh the pros and cons and look at how this would impact his quality of life. He’s making progress but by adding this new “tool” would we see greater strides? Would we see regression? How would this impact his life down the road?  (Questions, it seems, we ask on an almost daily basis when it comes to treatment options for him.) So, what’s this new “medication” you ask? Botox. Yes, you read that correctly. We have decided to give our 2-year-old Botox injections (and by “we” I mean his doctor.) But this isn’t your mother’s Botox. When given medicinally (vs. for cosmetic purposes) the dosage is significantly larger. The magnificent (or so I’ve heard) non-invasive cosmetic helper apparently has numerous medical benefits. Apparently “duct tape” for the body, Botox has given relief to migraine sufferers, those with...

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What They Didn’t Teach You in School About Health Insurance

We’ve known for a while that we needed to get Gavin a new adaptive stander. While we have one on loan from the N.E.A.T. Market, the issue is that it’s a little too big and he doesn’t feel comfortable in it because there’s no back to it (the stander makes him lean forward). Problem is when he tones, he does so backwards, where there is very little support to make him feel safe. Knowing the process to get the new stander would happen after my company changed health insurance companies; I started asking questions weeks prior to ensure we would have benefits for coverage. Without getting into all the details, I was assured that it WOULD be a covered benefit. I checked my benefits summary once enrolled to verify that the stander was INDEED a covered benefit under “Durable Medical Equipment” and was not listed with any “exclusions”. Based on all that information and when my insurance changed over we took Gavin to Shriner’s Hospital to be fitted for a new adaptive stander (June). (Quick side note – an adaptive stander is just what it sounds like. An adaptive stander promotes bone strength by having the user bear weight on his/her legs, it also helps with digestion, circulation, and breathing. In Gavin’s case it would also help with trunk and head control and would be the stepping stone to...

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Best. Update. Ever.

On June 23 I wrote about our search for a new daycare and all the concerns, issues and complications that accompanied that search. As we get ready to head on vacation and summer camp at daycare winds down, I thought I would steal a few minutes to look back at how far we’ve come. First, that 8 weeks have passed is absolutely ridiculous to me!! Where did the summer go!?!?! By the time we get back from vacation, summer camp will have transitioned to school and my three little ones will be in full on learning mode (not to say that they weren’t learning over the summer but this will be more “school rigid” than “summer fun” learning). I am so happy to report that all three kids made an amazing transition to their new daycare. I’m not going to lie – it was a tough 8 weeks. I knew Bailey and Spencer, for the most part, would be fine. They had their good days and not so good days. We finally made it through two full weeks with no attempts or actual bites from Spencer (so we get to say good bye to his shadow!) and Bailey LOVES her new friends, teachers and the fact that she got to go swimming every day. So my concerns really weren’t for them. The big concerns were for Gavin. Will he...

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