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Sunday, November 8, 2015

Still here, just busy

Halloween 2015
Izzy from Jake and the Neverland Pirates

October came and went and I literally did not have time to document any of it the way I would have liked to. There have been many times in the last {almost} 6 years where I felt like I was impossibly busy. I kind of was, but I have learned in the last 3 months what busy really is, and particularly the last month. More than once, we've broken and tied our old records for the number of medical appointments in one day and in one week. Not something I'd recommend trying. I've had to let things go that made me really sad to have to let go, like attending some of my older kids' school events. So much of my time and energy has been demanded by our new "adventure" that I have had to make a lot of sacrifices, and so have Donny and the kids. The things I've still been able to do have not been up to the standard I'd like them to be at. For lack of better term, everything I've done for the last month (or really 3) has been pretty half-assed because that's all the ass I could give. Ha ha. It is all for good reason and we are happy/grateful to be doing what we're doing, but it has been hard. Really, one the hardest things we've ever done in many ways. We just finished the 30 hours of training we've had to take over the last 6 weeks, and it feels great to have accomplished that, but also to not have the homework that went along with it and to have our Saturdays back. 

There are some updates to share. I don't remember if I shared it before or not, but Raya was formally diagnosed with ADHD, combined presentation type. (or something like that) I thought I knew what ADHD was, and I kind of did, but after having it really explained to me, now I know what it actually looks like. The more her doctor explained symptoms to me, the more it all made sense. We have had very few times in Raya's life where we were given a diagnosis that explained what we were seeing and gave us a real "aha moment," but this was a huge one for me. I have never wished any diagnosis on my darling girl, but like I've said before, when you see so many red flags and you KNOW there is a problem, it is a huge relief when someone says to you, "Yes, we are seeing what you are seeing. This is what it's called, and this is how we try to help her cope with it." We are now working on sorting out our plan moving forward, and will be having an IEP meeting soon to incorporate accommodations into her IEP for the ADHD. I'm feeling optimistic that doing that will help reduce the stress that kindergarten is putting both of us under. The good news is that Raya still LOVES kindergarten even though it has been challenging for her so far.

The next thing to update on is really a non-update. We are waiting on the results of our parental genetic testing to see if either of us has the same gene mutation that was found in Raya. It's a gene that seems to have a connection to gastroparesis. I'm still not convinced that parental testing is going to give us a clear answer as to whether or not her gastroparesis can be attributed to that gene, but it will at least be interesting to see if either of us has the same mutation. 

We FINALLY got Raya's orthotics. They were ordered at the beginning of August but apparently the person who was working on insurance auth no longer works at the orthotist's office, so they completely dropped the ball, as did the chick I talked to on the phone about 3 weeks ago who told me she'd look at Raya's file and call me right back but never did. They felt so bad about how long it took that they overnight mailed them to us so that we'd have them in time for our last appointment with her PT before our PT auth runs out. Oh, yeah, we FINALLY got her support coordinator to put in the auth for PT. That was another whole circus. Raya turns 6 in a few days, and because the state is perpetually in a budget crisis, they are booting out most of the kids who turn 6 unless the parents can provide enough documentation to convince the powers that be that their child still meets eligibility requirements. It is maddening. If she didn't still need the services, we wouldn't be doing them. I wouldn't be spending hours of my time every week for the last {almost} 6 years going to therapies 2-3 times a week and trying to keep up with 3 home therapy programs. I wouldn't cry tears of relief when it's time for her respite provider to come over. It's just ridiculous that they can make snap judgments (and yes, I have documentation that it was a snap judgment based on 3 year old information) that cost a child the resources that are helping her progress toward reaching her full potential. And yes, if we're being transparent, it is very scary to think of losing her secondary medical insurance. A big reason why I've been so busy is that I've been making follow-up appointments with everybody that can possibly help me provide documentation that the state needs, and also trying to squeeze in everything I possibly can before she turns 6 just in case she does lose everything. I have been beyond tired these past 3 months. I have felt physical exhaustion that I haven't felt in years, and emotional & mental exhaustion that I haven't felt since Raya was a baby and things were scary and uncertain. So many weeks, I've caught myself starting to think about canceling a therapy appointment, but then I've reminded myself that these could be her last ones, so we've gone anyway. I need to know that I've done everything I can for her, and right now it means wearing myself out in the process of taking her everywhere she needs to go in addition to all of the new roles and responsibilities I've taken on since August. 

We have a meeting this week where we may or may not get authorization to continue therapies, so I'm praying that we are able to continue. I've given the state the documentation I got, and we're praying that it's enough. In the mean time, I'm trying to keep myself calm about it all and have faith that things will work out in Raya's best interest.
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