Persistence

It is that time of year for Owen. Doctor appointment after doctor appointment. ENT, Hearing Tests, Eye Tests, Dental visits, Orthopedist, Pediatrician, Sleep clinic, the list goes on. Some appointments are tough, some are encouraging. Owen hates them all, especially if you call any one of them a "doctor" so we resort to just calling them Ms or Mr. That helps - sometimes.

Last week was his hearing test and ENT follow up. After another surgery to replace the "permanent" tube his hearing tests show he is back to the mild loss range which is good. Just a month prior he was falling into the moderate range. We are thankful to see the difference a tube can do to help his ears hear better and prevent infections. As much as I hate these surgeries, I am glad we pushed for a new tube!
While he was under for surgery they also did another scope of his trachea to see if after 2 years it has improved. Result...no improvement. Still showing the size of a 1 year old and his tongue is still shows it causes obstruction. We had hoped with time it would have grown but the results were that it is showing no signs of improvement. Bummer. Looks like Owen will need his CPAP for life :(

This week was his sleep clinic follow up. He has had his CPAP for about a year now. Over time he has adjusted to wearing it more at night. The last report we had about 6 months ago it showed he would keep it on for a max of 2 hours and now he gets up to 5-6 hours at a time! We still struggle to get it on him. He fights a little but once it is on it he falls right to sleep.
CPAP is hard to deal with especially since Owen doesn't really understand why we push it. It was refreshing to sit with the dr. and have him thank us for our persistence. His ENT and sleep dr. really didn't think his sleep was that bad. But we pushed to get them to do the testing again and make sure they saw and understood what we saw. He said we were ahead of our time and he has now changed the way he approaches situations like ours. I am thankful we pushed. Thankful that it has helped Owen and thankful that it was able to change opinions and treatment of others. Owen was even rewarded a gift card from the dr. because he has been doing so well.

Along with all the dr. appointments that happen this time of year it is also a big time for us to reflect on our journey. Although sometimes it seems overwhelming to keep up with all these things, I am thankful for the supports Owen has. Ear tubes, hearing aids, Orthotics, CPAP, Thyroid meds, physical therapy, speech therapy, occupational therapy, special education, paraprofessionals. I am thankful we live in a time that allows for all of these things/people to help him. To help him live such a successful life. To help him be happy. Sometimes we have to be more persistent to get him what he needs, but that is our job.