As of October 1st, we have officially changed our medical insurance. Since Clark’s disease is so rare, we thought it was best to go with doctors that are more familiar with Dyskeratosis Congenita, as well as having a plan that doesn’t restrict us from visiting with specialists regardless of whether they are in or out of network. Our previous health care provider prided itself in “preventative care”, and I think they did a great job of that. I think educating patients on how to properly eat and exercise is wonderful, but this focus isn’t as much help when a genetic illness shows itself.
Over the last 2 weeks we have been busy finding a new Home Nurse to help with blood draws, bandage changes and cap changes. We actually can do all of these tasks on our own (as long as both Patrick and I are available)… but the real challenge is dropping off blood at the lab. Going into a lab filled with sick people to drop off blood with Clark is extremely high risk – especially given that we can’t even take him in to a grocery store right now. So we really need this service to help out when Patrick is at work, as well as dropping off the blood at the lab. So far, this has worked very well, and we’ve learned a lot from the nurses that have come in to help us.
Changing insurance has also meant that we need to change our pharmacy, and medical supply company. The transition has actually run quite smoothly (with the exception of a bumpy start with the home nursing company) all thanks to UCSF making phone calls and coordinating on our behalf. UCSF has really impressed us with their customer service, and proactive approach to helping their patients.
We are also busy trying to find a primary doctor for myself, Patrick and Connor, especially since we need to get our flu shots soon! This is not an easy task. I am literally “shopping” for a doctor by searching through our insurance companies website for the “perfect” doctor who needs to be in-network. We recognize it is a massive advantage for us to have this selection, but that doesn’t make it any easier to identify a doctor that is well suited for our needs. That said, hopefully we can find one family doctor that will be able to see all of us!
As for Clark’s progress, he is growing, laughing, playing and trying so hard to communicate! I think he is only a few months away from saying some legible words. He can’t say Mama and Dada yet, but he is very close to saying “Yes”… right now it sounds like “Da”. Maybe we have some Russian in our background? One thing that is helping Clark communicate is for us to not give in. Thankfully Grandmom has been very consistent with this even when I forget! When he starts whining for something, whether a toy, milk or a cuddle, instead of doing what we think he wants immediately, we wait and make Clark attempt to say the word. As long as he tries, that’s what really matters.
Both boys are enjoying their morning walks with Grandmom around Heather Farms. Heather Farms is a local park with a long walking path, playground, multiple baseball and soccer fields, a dog park, skateboard park and a large pond with fountains. Clark walks with his mask on, while Connor rides his bike. They love watching the turtles in the pond (which happens to have tons of cute red eared sliders)