It’s been a very long time since I’ve updated Tiny and Fierce. We have had a lot of changes and I haven’t found the time to write. Here’s what’s going on in Tiny Mumkin Land:
- We moved from Gainesville (our college town) to Orlando, Florida in May of 2016. Hazel’s dad got a new job that allowed us to relocate, and we moved to be closer to Hazel’s grandparents so that we could get extra help. We also wanted Hazel to be able to attend a special needs charter school that offered preschool for toddlers.
- Hazel started school! This was a big deal for both Hazel and me. Hazel stayed at home with me or a nanny until June. Hazel has been doing well at the charter school, and it has been life-changing for my stress levels. I have time to get my work done, exercise, and have a tiny personal life!
- Hazel turned 3! This is a big deal because she’s now enrolled in the public school system, rather than Early Intervention. We can apply for different services and are now on the medwaiver waitlist. Unfortunately, there’s still a 10-year waitlist to get on Medicaid if a child is medically needy, so we are still fighting the battle to get certain services. If anyone has experience getting a child with a severe disability onto SSI or Medicaid in Florida, please let me know! I’m currently getting ready to talk to our local representatives to explain our situation.
- Unfortunately, Hazel was diagnosed with severe sleep apnea in July. We have tried a CPAP for a few months, but it has not been successful in moderating the sleep apnea because Hazel moves so much in her sleep. We have decided to have Hazel’s tonsils and adenoids removed later this month. Because her mouth and nose are smaller than typical, removing these tissues will help her breathe easier, and will also hopefully stop the chronic sinus infections she suffers from. I pray that the surgery will successfully reduce her obstructive sleep apnea so that she can sleep easier and avoid wearing the CPAP.
- Hazel started several new therapies! She gets OT, SLP, and PT at school and after school in a clinic (we still stay busy!) and she enjoys Aqua OT, conductive education, and now hippotherapy! We’ve seen improvements in her head and trunk control. We also believe conductive education has taught her how to bring her spoon to her mouth when eating her purees. We are so proud of our little Bean!
Thanks for all of your support. As our life reaches our new normal, I hope to post more often!