Author: Kate Anderson

One cannot live on chocolate alone.

We got some amazing news yesterday!! Gavin had his height/weight check-in and (drum roll please) he GAINED weight!! Now while this may seem like a no brainer let me assure you it has been a battle. About a year and half ago Gavin’s body went into protection mode and shut down so he stopped gaining weight and growing. We didn’t know that he wasn’t getting enough calories to keep him going. I know, how could we not know? Well, this was around the time that he was officially diagnosed with CP and we started to really learn what that meant. We just didn’t know enough about CP to know that every time he toned (muscles contracted) – which in a day is often – he was burning a ridiculous amount of calories. His doctors didn’t realize either until his body went into protection mode. So that’s when we started the process of calorie loading. For a few months we were doing a good job. We started to see growth again – and even though he was (and still is) on his own growth curve the fact was he WAS growing. Then the summer hit and things went downhill. He was hospitalized with some unexplained respiratory issue, got hit with mono (at 18 months old), had a recurrence of the earlier respiratory issue, a few ED visits and well his growth tanked again. Like...

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Life Lesson: Be Nice.

Being a parent is an amazing, beautiful, scary, frustrating (add in just about any other adjective here) experience. You become your child’s biggest cheerleader, advocate, protector, enemy (the teen years terrify me), friend, etc. But when you have a special needs child, those feelings intensify so much more, especially depending on their level of dependence on you. Translation: sometimes it’s harder to brush off the hurt caused by other’s insensitivity towards your “different” child. As parents we have a responsibility to ourselves and to our children to do better than our parent’s did for us and I don’t mean materialistically (although I would so NOT turn down the lottery if I ever won). Something happened earlier this week that upset my husband and I a lot more than I would have initially thought. Sadly, I don’t think it was because of WHAT was said – which I won’t repeat – but needless to say was not something that as a PARENT (special needs parent or not) sat well with me, but more because of where it was said and the manner in which it was said. As a family that doesn’t fit inside what is considered “normal” we are open to ridicule – which is fine if that is what someone feels the need to do. (Please note that the situation I am alluding to was not directed at...

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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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