It has been CRAZY! You may have noticed my reviews (and giveaways) have picked up, and I’m trying to continuously update my Holiday Gift Guide as well as promote my own businesses for the holidays outside my blog, plan Black Friday and Small Business Saturday specials, book parties, and eventually break out into different blog(s) strictly for business. I will save that update for another day, though!
We have been very busy in general – so much so that I’ve not been very good at updating! So here we go! The week after Chaz’s sleep study we were supposed to have a day time sleep study. We weren’t comfortable with that idea. We talked about it a lot and decided to call them to discuss our concerns prior to the day time study. My husband talked to the director who listened very carefully to our concerns and apologized for the way the sleep study went. He agreed it would be best to do a home sleep study, which will be done once a machine becomes available. I think this will be a wonderful solution!
On to the other issue – related or separate? We don’t know yet. The swallow study for Chaz. Realistically the breathing concerns while he sleeps could be related to the choking concerns or they could be different. Both could be exasperated by his Sensory Processing Disorder. There are still so many questions. Unfortunately, we’ve gotten nowhere with the swallow study. It feels like there have been many phone calls made, follow-ups, etc., yet we’re still at a standstill. It was kind of ironic because as I was typing this on my iPad at the kids’ therapy the Speech director asked if we had any word on this referral. We just can’t seem to get clear answers. We talk to the nurse at their Dr office, and she says we have to call radiology. I call radiology, and they tell me they don’t do swallow studies for pediatrics and we need an outside referral. So, I call back the nurse, and the circle begins. Eventually, we were told we would have to go in to radiology just so they can tell us in person they don’t do it there so we can get an outside referral. Seems pretty silly to me, but I guess we have to do what’s necessary at this point! Referral runarounds are never any fun!
And speaking of referrals, Aurora finally started Occupational Therapy! I’m so happy for her not only because I know this will help her a lot, but she no longer feels like the “odd one out” either! The boys each have OT and Speech, and now she has OT at the same time as them, so it works out very nicely for everyone. We were nervous for a bit because our insurance doesn’t cover therapies for the sensory issues alone despite a Sensory Processing Disorder diagnosis. She even has a Developmental Delay diagnosis as well as being noted that she is being monitored for ADHD and anxiety as well. All of the runaround to get her into therapy from her Primary Doctor was because he said the diagnosis is what is important. I honestly knew that wasn’t the case, but again, you kind of have to just go with the flow so to speak, but that was confirmed. So when she had her evaluation she scored amazing high in a lot of her motor skills – fine and even gross motor skills. She will be 5 just before Christmas, and her “age appropriate” motor skills were that of a 6+ year old! She does hold her pencil incorrectly, but it didn’t affect the scoring. For sensory she scored dramatically “worse” than the average in every single area. I’m so surprised that alone wouldn’t be enough, but her therapist said she had one more test to run, and if there wasn’t a concern in that area she may not actually qualify for therapy by Tricare’s (our insurance) standards. It breaks my heart that sensory is regarded as not important on its own particularly because it truly affects her every day life. The verdict was, though, she scored below “average” for one of the areas. The technical name slips my mind at the moment, but it has to do with her ability to distinguish right from left and misjudging the sides. So yes, I was not surprised as she does have many “accidents” that include bumping in to things and overall clumsiness, and this explains that. It’s never a “hooray” moment when you discover your children’s disabilities, but there IS always a sense of relief because a) now it has a name and a “face,” which means it has treatment or therapy to help (and now qualifies for therapy in this case as well) and b) now we can understand it more as well.
As always, my husband has had tons and tons of doctor appointments as well. He got his “Unfit for duty” orders last week, which means we’re nearing the end of the Medical Discharge/Retirement. We already found some news that may affect our plans, but that’s also a blog for another time. But yes, we’ve been BUSY! Since we share one car sometimes my day consists of working on business and/or blog stuff, homeschool, drop Joey off at his appointment, go to the kids’ therapy, pick Joey up from his appointment, and sit in the car and wait for his final formation of the day. I am generally wiped out by the time I get home. Because we’ve been so busy with other appointments I haven’t really had many of my own, which is something I need to do as well! One thing is for sure – I can never complain of being bored! 🙂