I had to make four phone calls yesterday, all related to Kiran. I have been on the phone five times already this morning, six if you count the one phone call not pertaining to Kiran.
Sometimes, phone calls alone could easily make up a pretty solid part-time job.
I hate phone calls. If I could drive to all of these places and simply talk to someone face-to-face, I would. Something about talking on the phone has always bothered me. I have to be in the right mindset to handle it. There have been many days – especially early on in this journey when this many phone calls was the norm in a given week and not the exception it is now – when I simply couldn’t. I put phone calls off often.
I’ve grown significantly in this area. Does that count as a way-my-life-has-changed since having Kiran? It definitely has. Phone calls are a necessary part of life for us.
Kiran has been on a waitlist for a Medicaid Waiver – the Health and Disability Waiver – since his first week of life. We were told the waitlist exceeded two years. In December, we were finally able to have the assessment done to determine if he would get a spot that had opened up. Last week, we found out he was approved for this spot! This is exciting news! I am still waiting on a callback to determine the accuracy of all of this, but, in addition to the Medicaid coverage he has already been receiving, this waiver provides a lot of good extras: respite care, special equipment, home and vehicle modifications, etc. Respite care is a nice benefit right now, and, depending on the trajectory of Kiran’s development, it may be nice to be able to get a medical stroller or wheelchair at some point … he is getting heavy and walking still may be a bit of time away! Regardless, I am thankful he was given the spot, and we now have access to more benefits for him. It’s been a long time coming (and boy, respite care would have been EVEN BETTER when he was a newborn!)
Tomorrow is Kiran’s big appointment day in Iowa City. We will be leaving at 5 am to arrive in time for an early morning echo. Then we meet with his cardiologist, gastroenterologist, and endocrinologist. I woke up with a lot of dread in my heart for tomorrow. Kiran is definitely a lot more “with it” and a lot more nervous about things medical. Last week, I had a stomach bug (24 hr. one, thankfully), and I put on a mask and gloves to be able to say goodnight to him….Let’s just say the uncertainty, fear, and tears that happened when he saw his MAMA like that makes me nervous for him tomorrow. I hope some of the new calming techniques we have learned and utilized from OT will help us get through the day…and some good distracting toys! I know the endocrinologist wants labs done, so that will likely be the most challenging part of the day.
Specific prayer requests: That we can keep Kiran calm and happy throughout a rough morning of appointments; that they have no trouble getting blood from him and can do it on the first try; that all news received is good news.