I've written lots of posts about what's going on with Joshua's health, but never a post about how much we have to be grateful for, specifically in regard to his special needs. So this Thanksgiving week, here is a list of the ways we've been cared for, both by other people and providentially:
Going through 12 surgeries, half of which were in-patient with a PICU stay, Joshua has experienced no serious infections, no complications, and no bad reactions to anesthesia.
Dozens (maybe hundreds?) of people have helped us care for him - doctors and nurses and other health care professionals; PTs and OTs and STs. And (almost) without exception, they have been great and done such a good job!
We had access to a great local children's hospital in CHKD while we lived in Virginia.
Church and friend support - people have brought us meals (once in the hospital, on Thanksgiving Day 2011), loaned us cars for the month, watched our dogs, prayed for us, sent us care packages at the Ronald McDonald House, called, texted, emailed, and Facebooked their support. We have been so surrounded by love and support, especially from our churches.
Joshua has attended 3 public schools and at each one, the teachers and therapists have been so good at their jobs and truly cared about Josh.
Several things with health insurance: we were blessed to have great health insurance when Josh was born and ran up his biggest hospital bill; Obamacare allowed us to move around and for Kenny to pursue new job opportunities without worrying about Joshua's pre-existing condition; and moving back to Nevada has allowed us to access Medicaid as a secondary insurance, which will cover private feeding therapy.
Our extended family on both sides of the family has been very supportive and actively involved in Joshua's care, even when he was on the feeding tube and oxygen.
Kenny and I both had good maternity and paternity leave policies at work, allowing us to stay with Joshua while he was in Salt Lake City.
We were blessed that Josh was born at this time and place in history, when there are the right medical interventions to keep him alive and thriving.
Considering the odds with his particular deletion, we are very blessed that he did not have a serious heart condition requiring heart surgery. Although we don't know what the future holds, we are blessed that he wasn't more seriously impacted by his chromosome deletion in a whole host of ways.
With developmental delays, there's extra joy and celebration when your child reaches a new (and sometimes hard fought) milestone.
Kenny and I have been on the same page regarding Joshua's medical care.
The Ronald McDonald House allowed us to have a comfortable and affordable place to stay, with home cooked meals provided each night, while Joshua was in the hospital out of town.
I've made new friendships with other parents going through similar things.
Our locations at different points in Joshua's life have been providentially helpful: being born in Reno meant that he had access to a jaw distraction in Salt Lake City rather than getting a tracheostomy like he would have in certain other parts of the country; moving from the mountains down to sea level Virginia meant that he was able to go off supplemental oxygen, and later that we were able to get genetic testing done; and then moving back from tropical Virginia to dessert Reno meant that Josh's problems with asthma and allergies decreased substantially.
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