Hey there! Thanks for still stopping by even though the posting has become more than a bit erratic. It's been a busy summer and a busy fall so far and well...we just have a busy life....
Jack continues to have revolving eye and ear infections and congestion. We've treated with drops and oral antibiotics and we eradicate an infection or think we do and another crops up. We've now got him on oral Bactrim (an antibiotic that tends to cover for a lot of different types of "bugs") for now and we're keeping him on it to prevent more infections. Is it Jack's immune system? No, we really don't think so. Jack has what the allergist calls vasomotor rhinitis. Any little tiny particles floating around in the air (perfume, dust, dirt, pollen, etc) tend to irritate Jack's nasal passages and that causes swelling and congestion. Also, Jack's anatomy does not allow for adequate drainage of his sinuses or Eustachian tubes (even with ear tubes) so that's a lot of fluid sitting around waiting to get infected. The Bipap AVAP complicates things too. The Bactrim seems to be working. Our ENT and our family doctor have suggested that Jack having his midface surgery will clear this up.
Jack is in pre-K with Ms. Sunny again this year. Since we opted not to put Jack in kindergarten, Jack will not be receiving any therapy services through our local school district. Ms. Sunny reports that Jack is doing very well. He participates more and more in class. We are all excited to see how rapidly Jack is developing.
Without any therapy services, I have been functioning as Jack's teacher of the visually impaired (TVI). Ms. Sunny and I have covered the classroom with large print and braille labels. I have also been busy polishing my Braille skills and adapting all of Jack's favorite books. Also, I have been making large print-braille copies of the books they use in the classroom for their letter of the week as well as their colors and numbers. So now you might have a better idea of what I've been doing rather than blogging.
We are headed to Dallas for Jack's check-ups next week. He will undergo sedation for a MRI of his brain and the GI doctor will also take a look down his throat into his stomach to check on his reflux. We will then follow up with our Dallas ENT, the neurosurgeon, and Dr. Fearon, our craniofacial surgeon. We'll discuss with Dr. Fearon whether he thinks it is time to move forward with Jack's midface surgery.
We've had lots of goings on so I haven't give the full update of all our activities but just trust me we've been busy.
Thanks for sticking with us and keeping us in your prayers!