I've been distracted lately. My mind has been pretty focused on one topic and one topic alone and it's been taking up most of my extra-when-everything-that-needs-to-be-done-is-done-energy which normally goes towards blogging. This post will show what's been going on, although I've blogged about it a bit while it's been happening. When I look over this list I still feel a bit like we're in the midst of a whirlwind.
Today we met with Mae's pediatrician. Our last appointment with her was when we were lucky enough to find her (she's a resident at the University and in the past we've just seen whichever doctor is in, but now we're requesting her) and she's the one who spent a good portion of time with Mae and suggested autism spectrum testing. So much has happened since the last appointment. I went through my calendar and wrote down exactly what's been going on, along with my questions, Mae's diet, and our supplement plan, so that if my mind went completely blank with the overwhelmingness of it all, I would still have it all in hand.
I'm a little overwhelmed with how blessed we've been during this whole process from start to finish. Our doctor is amazing. Every person along the way has been amazing. I know how hard getting a diagnosis and therapy can be because I have friends who are going through the same process as we are in different parts of the country and the services available are dramatically different based on where everyone is... so as I wrote down everything that's happened I feel keenly aware of how fortunate we've been for things to move so quickly.
Here's a month by month look at what's been going on in our lives lately (alongside the craziness of law school and homeschool and running a business! Whew!):
September 11- Dr’s Appointment with pediatrician. Referred to Community Mental Health for Autism Spectrum testing. Called that night and made and appointment for the following Monday.
September 12- Blood test at the hospital.
September 16- Autism Evaluation at CMH
September 24- ADOS testing at CMH
September 26- Autism Diagnosis
September 30- Begin GAPS diet
October 4- Meeting with our case worker and the head of the therapy center we'll be working with at our home
October 6- I contacted University (autism lab) about participating in a study
October 7- Received a reply from autism lab- emailed back and forth and discussed study and our suitability for the study on the phone
October 8- ABA evaluations begins
October 10- Start Tri-Enza- Digestive Enzymes
October 11- Dentist appointment (they were able to look in her mouth for about 3 seconds…)
October 15- Part 2 of ABA Testing
October 17—ADOS at University for the study (finished ADOS and began Mullin)
Start Taurine supplement
October 22- Meeting at therapy center with case worker, head of center and one of the ABA therapists who will be working with Mae.
October 24- 2nd Session of Testing at the University
Start Cod Liver Oil tablets
October 25- CMH Cognitive Testing
October 29- University Testing (finished Mullin while I completed an interview about at home behavior)
October 31- MSU final day of testing. Admitted to the guided portion of the study, which means the online course plus twice weekly Skype meetings with a graduate student to help me plan what we’re working on.
Attempt to start Multi vitamin. Not successful because of the taste…
November 1- Mae begins ABA therapy. It will be Monday through Saturday (6 days a week), three hours a day, in our home.
November 6- Follow up appointment with pediatrician.
November 12- (need to reschedule for another day this week) The graduate student we'll be working with will be coming over to set up the computer for the study program and skype meetings and will be filming Mae and I interacting at home.
The doctor was really pleased with the changes she could see in Mae. During the last appointment she ground her teeth loudly the entire time we were in the office. Today she didn't grind her teeth at all. She said that it was the perfect appointment to end the day with because things are going so well and moving along so quickly.
We also discussed the plan going forward in supplements, which involve trying a new multivitamin and adding in fish oil, vitamins b6, extra calcium, magnesium, vitamin c, vitamin d and zinc, probiotics and then intestinal yeast treatments like Saccharomyces boulardii, Colostrum, Grapefruit Seed Extract, Candex and Monolaurin (I would show you the paper I showed her where the supplements are mapped out through December week to week so we can see what works and what doesn't, but you might think I'm even crazier than you do after reading the previous paragraph). And she's going to be reading up on some of the vitamin treatments/ yeast treatments that we might try in the future depending on how all of this goes.
In other news Mae is really enjoying therapy. The therapist for Wednesdays couldn't make it today and Mae was really disappointed. She definitely missed doing her little "school" alongside her sister (and Mommy's approximation of that school just didn't impress her).
My brain fills over filled with everything I've been reading and learning at the moment after weeks of meeting with experts and asking questions and then going back and reading more. But I think we're finally settling in to a routine (until Speech Therapy and Occupational Therapy start sometime in the near future and then the routine gets even more hectic).
I can hardly believe all that's happened. But as Maggie looked at me as we sat in the doctor's office and said "E-I-E-I" with a huge, proud smile, as we were singing Old McDonald had a farm in the doctor's office I knew without a doubt that it couldn't possibly be any more worth the effort.
I'm so thrilled at Maggie's progress, and wonder how you have time to think, much less blog!!!ReplyDelete
Thank you for blogging about your/Maggie's experience. It is absolutely fascinating!ReplyDelete
What is thing is completely wonderful is that the dr are encouraging of nutritional/supplement therapy. So often that is over looked.ReplyDelete