This past week there has been plenty to juggle. I returned from a much needed and first major vacation in my life thus far, from visiting NYC for Commicon which was amazing! I met Sea Astin [spelling? From Goonies, Lord of the Rings, a few others..], 3 rows in the front for Christopher Lloyd Q&A, met and received Carrie Fishers autograph, and tons more. I was even on the Good Morning America TV show outside one of the mornings where one of the cocky guys from the reality show Jersey shore winked at me..and I don't even watch their show, and ran into as well as visited with 2 good old friends on different occasions. Some major tourist spots were visited such as Statue of Liberty, Coney island, Madison Square Garden, and so more I don't even remember now. I went with some old coworkers from Sam Goody days years ago and it was well worth it! It helped keep costs down as things are obviously super tight for me right now, while still having an amazing time.
I took 2 days off of college to go which makes me really hope that the next 5 weeks left of college I will accomplish with zero illness and zero further tardies.
On another note, insurance approvals are extremely frustrating. I won't go into politics of insurance or even what insurance we currently have. I will say that Autism isn't really accepted in terms of insurance approvals. Hence, we've had to do tons of out of pocket costs for Colins screening. He has seen 2 different people now with 7 different visits costing us around $800 out of pocket. Thankfully we don't pay on car loans at this time which helps and some times money falls in place when you least expect it. But what is extremely frustrating is begging the pediatrician to send over the paperwork and determine how they sent it over on the file to determine if they filed it the right way for approval or not. This has been going on. I finally found this lady who has dealed with special needs [autism in particular] for years and now that she finally made a diagnosis Colins pediatrics office calls back with an insurance approval for Autism screening for him! "great news, he has been approved for screening with the Psychiatrist that the insurance previously declined him for" which turns out, since we had a diagnosis out of pocket then insurance was willing to pay for screening. Why do I need screening after all that? We have a new lady who is amazing, and don't want to switch to some cookie cutter method. Besides, she believes in a holistic approach vs. medicating ever little problem which is huge to me as his parent.
We're also still waiting on the Stickler Syndrome insurance approval that was sent back in March. They were quick to decline screening his brothers to determine if they have the gene. Now we also have to wait for genetic testing approval from insurance to determine if he has the gene code for Anklyosing Spondelitis, as well as which Achromatopsia genetic code he has. The Pediatricians office keeps on fighting me on a Neurologist for screening this CDD further. I will go to another Dr is we need to but Colin will be seen. That will tell us now if it's most likely a yes or no on that. I won't take no for an answer on something as serious as that. If you found out you might just have potentially 6 more years to enjoy your son ever speaking again and behaving some what independent..wouldn't you want to know ASAP to spend those last few years as much as possible focusing on your child? I know I do. Even now. Even if he just has Aspergers, he could still lose his vision so I want him to 'see' all that he can as much as possible now. Explore! Go hither. His life won't be over after these facts, but I'm all about focusing on what time you have vs. not even trying.
Right now we're waiting on SSI to be approved to help with all these medical needs that aren't being met. Any money you might donate to us directly on that program [see the top right hand side of this page] will go towards any services needed for Colin. And there is lots! We're also working on saving up for a video camera to record him, as well as an electric piano to help his Autistic musician genius that is ready to come out and play! He sings the most detailed little tunes between playing, eating, playing on the ipad, playing with his brothers, doesn't matter--there's always a song like you'd hear on a TV show. Either it's super happy, sad, contemplative, or loveable. He reflects his feelings through his certain tunes. Even his Psychiatrist he see's now thought that was quite the skill he has and was impressed by how detailed to it he was.
On another note, we are also needing to schedule an ERG for next month. I hope they have an opening as typically they're 2 months out. They're observing his low ratio of Cone and Rod cells to determine if it's progressive or not. Every 3 months they're going to get another rating. I am hoping that this time we can better approach the IV situation once needed and local anesthesia that he doesn't respond well to due to sensory problems as well as his autistic side.
No comments:
Post a Comment