14 Apr Updates for Cali and Ryann with some venting of course :-)
It is absolutely ridiculous how slow the medical industry moves. I cannot tell you how many phone calls it takes to get anything done. Its crazy to me how many phone calls it takes to get people to do their job. If I wasnt calling the doctors, insurance companies, teachers, therapists, psychologists, etc. etc. etc. then nothing would get done. Its not even one phone call, its consistent calls to make sure our case hasnt been forgotten. I have lists, calendar reminders, notes, dates, times etc and I am still trying to keep track of everyone I need to call to get appointments that Cali and Ryann need. Its a full time job and since I have a husband, 3 kids and a business to take care of its stressful to know that if I am not calling everyday then I am moved to the bottom of the pile. I feel proud of myself for a days work when I can get through the maze of phone menus and actually talk to a live person and they know what they are talking about. It is so fruatrating when I finally find time to call and then I get a menu with options that lead to more options and then I have to listen to the entire message in Spanish and then I finally get to the person I need and it is another machine to leave a message. Ugh! Now its back on the to do list that never gets done because there are really no people there to take your call. Its torture! I want to throw my cell phone out of the window and watch it shatter!! Ugh!
ANYWAYS!! I actually do have some updates from my month of phone calls. I am still working on most everything else but we FINALLY have Cali and Ryann MRI scheduled. Cali’s is set for 4/21 10am and Ryann 5/5 7am, both at UCI hospital. They will both have to be under full anesthesia and the entire process will take about 5 hours (including recovery). I am terrified of course. I have been working endlessly to get these appointments set and now that they are I feel like I am going to cry, which I will for sure, all day that day and probably a lot of other days too. So please say special prayers for our little girls that they will have a successful MRI without any hiccups. Thank you 🙂 xoxoxox
What we have in the works: I meet with the Childrens Rare Disease Network this Thurs morning. It should be very interesting and I am super excited to see what oppurtunities they will uncover.
I am still working to get the UCLA Center approved through my insurance. There are neurologists and orthopedists that I really want Cali and Ryann to see. They are a reasearched based hospital so its important.
Getting our insurance to approve out of network/area is a huge struggle and I am in the appeals process right now. UGH!!!!! HMO Insurance is enough to drive me crazy!
Cali will be seeing a psychologist for a full report and anlysis which is exciting. She is also going to speech therapy two hours per week now instead of one so GO CALI!
Ryann is getting physical therapy in our house once per week for an hour and we love our PT, she works with Cali too. Ryann has a lot of work to do and is very delayed in her gross motor. Good news is she loves therapy and is happy and cooperative the entire hour and works really hard. GO BABY RYANN!!
I think we may have found an adaptive bike that a very nice man MAY be donating to us. I would love for Cali to be able to ride a bike. WOW! That would be amazing! We will soon see if he is donating the bike or hopefully gives us a low price.
I will send more updates as soon as I have any. Thanks for caring about our family. Your support and love mean so much to us. xoxoxo