Author: Kate Anderson

The First of Many “Firsts”

The day I have been dreading for five years arrived on Tuesday:  Kindergarten.  My “baby” isn’t such a “baby” anymore. With each passing day she needs me less and less. “I can do that mommy”, “I don’t need any help”, or my favorite, “Mother, I can do my own hair” (remember, she’s FIVE!) She’s her own person now with (strong) opinions and views. The things she notices or comments on continually surprise me. So while I know it’s time for her to go and continue on her independent journey, I’m not ready. But let’s be honest, no matter what her age I wouldn’t be ready. I think I handled the first day better than initially thought. So I take some comfort in that. Although it was an insane morning ensuring each lunchbox was packed to its owner’s specifications, breakfast eaten, vitamins, teeth brushed, etc. Not to mention the “first day of Kindergarten” pictures. In hindsight I guess we were so busy I didn’t get the chance to worry or be sad. But as things have calmed down a little and I have time to reflect I wonder if she’s ok. Is she hungry? Is she warm? Is she warming up/getting comfortable and making friends or is she miserable? Will the teacher know to ask if she’s doing ok or just think her being shy is the way she is? Will they...

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The “Go-To” Family

When we first started our journey with Gavin and his diagnosis we didn’t know anything.  Well aside from the basics of him being a baby and how to care for him in terms of feeding, bathing, diaper changes, etc. But beyond that –when it came time for specialist and therapist appointments and specific questions we needed to ask – not a clue.  I was aware of what CP was but how it would impact Gavin or our family – nothing. Insurance…? I’m lucky I know the basics of plan coverage but how to get devices or services approved – seriously? I would have had a better chance of guessing the nuclear guidance codes than figuring that mess out. Literally, we knew nothing other than basic care for Gavin – (aka care you would give to an able bodied child). We have asked waaaay more than our “20 questions” at any given appointment. But along the way something happened. Something that up until recently I never thought would actually happen. We have learned enough and been through enough that we have become the “go – to” family. We are no longer the “newbies” looking to everyone else for help/guidance (although there is still plenty of that going on, trust me). We still ask questions – but we’re closing in on 10 an appointment vs. the 30 – 40 we used...

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When the Advocate Needs an Advocate

Back in March I posted about Gavin’s win against our insurance company in the battle for his adaptive stander.  I am still in shock that it took us a year, numerous internal appeals and an external appeal to get it approved. But it also left me feeling worried and nervous if that would happen for every single device we would need for him moving forward. While at Shriners in April we had Gavin fitted for a new gait trainer (AKA walker) and I fully expected to have to go through the same year-long battle.  But this time things would be different.  I would be ready for that battle.  I had “people” now. In my excitement over the fact that we had actually won our external appeal, I only gave a brief nod to the organization that was the driving force behind our monumental (at least to us) win  – The Office of Healthcare Advocate (AKA my “people”). Simply put these folks are AMAZING! I cannot say enough about how responsive, helpful, supportive, informative and understanding our advocate, Caroline was. Not to mention EXTREMELY patient with me! In my opinion, Gavin wouldn’t have his stander if it weren’t for all the hard work and effort put in by Caroline. From the get go, Caroline told me it would be a process – but she was there every step of the...

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Ferris Bueller had the right idea!

So I have to be honest. This is not the blog post that I’ve been working on for the past two days.  The post I had been working on was actually about something that happened about two weeks ago and that I had been hemming and hawing about whether I should write about it. I drafted the post but wasn’t in love with it. The more I wrote, the more conflicted I started to get. I even had a friend take a look at my draft last night just to get some input on where I was headed (thanks Stacy!) but even after we discussed what I had, I still wasn’t sure.    Figured I would sleep on it – that always helps right? Well not exactly. As I was running around this morning getting the kids ready, last min prep for a house showing today (fingers crossed) and getting myself ready for work I decided that since I was still so up in the air about what I had written that I would just put it on the back burner for now. (Side note: it’s nothing bad – just something that was odd and still not sure how I feel about it). Which of course left me in a little bit of a pickle for what I would actually write for today (yeah no pressure). Told my husband...

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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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