Today perplexity and tears collided. It was around 1:30 p.m. today when I finally heard back from C-Man’s nurse about his bone density scan (DEXA). I called the clinic uh-gain to see if anything new has arised (maybe they forgot to call me) …well such was the case. There was a new note after some careful digging through the notes, albeit wanting to find something to tell me so I stop calling them.Â “Oh Oh good… there is a new note here – They based his readings off a five year old chart and it looks like note number 1 says, he has osteoporosis,” the nurse says over the phone. Last I checked, osteoporosis in your 3 year old – is not good. The tears kicked in. Finally hearing SOME news, yesÂ THAT is good, butÂ can we be more specific or careful with our words here? I know I would appreciate that. No, the truth is that didn’t insult me, her intentions were good, nurses do their best and their jobs are bar none one of the most difficult professions to have in my super self-appointed valued opinion.
I received a call from C-Man’s pediatrician within the hour. It was at that time the perplexity kicked in.Â ”Well…there’s no chart for a kid 3 years old… and we don’t know what will happen if we give C-Man Pamidronate Infusions, as he could get hypercalcimia again and have to be hospitalized. We’ll have to draw blood constantly to checkÂ his calcium levels again to make sure he is safe… I can’t tellÂ you that you must do it, as it’s risky, but I can’t tell you not to because his bones will wither away.”
Yep, that was me thinking – sooo you’re telling me I have to choose to put him at risk of hypercalicmia/infection/blood draws/hospitalizations OR Osteoporosis?Â You probaby could insert another really long pause – because thats how I felt. It’s strange to be on the phone with a doctor who has very little time to be on the phone with you anyway and you are sitting there not saying anything. I must give my compliments to him though – he was and always has been very patient with me and Carter, even in this situation, which I am grateful for.Â Â I hung up the phone after letting him know I would think about it over the weekend and call Carter’s Endocrinologist on Monday to hear his treatment plan. I thought I already knew what he wanted to do – I thought he would say – “Let’s get started with the infusions.” Being the impatient person that I am (No matter how busy with work I tried to make myself – I can’t help it), I called the Endo office around 4 p.m. today, absolutely expecting to hear, “He’s out until Tuesday” (It’s never Monday and they’re never in when you call), but thisÂ timeÂ he was in. He called me back within 5 min. and he gave me a surprisingly different response than I had notÂ expected, “I’ve never done Pamidronate Infusions on such a young child, I would like to call around toÂ the U of M, Mayo and farther to see what has been done before. I want to make sure this will help him and I’d like to see if their are other remedies being used prior to something so invasive.”
I felt great knowing his team is willing to go that extra mile to make sure what they are doing is best for him and not simply easier for them.Â I feel great with the hands he is in here. Now the questions lies – - if he does do the infusions, will insurance cover it? M.A.? It’s still semi-experimental from what I heard so insurnace sometimes doesn’t, but how can it not with an Osteoporosis diagnosis?
We closed the book on eye surgery, tubes and his heart echo for a couple years. Now we begin the Osteoporosis road. I hope it’s a short one. He truly is a tough boy and so worth every appointment, phone call, therapy, blood draw, insurance bill, and random stranger explanation. It used to make me so mad at first when people asked, “Why is he so small!!?” I would (Sigh) and tell them – - he has Williams Syndrome. (All the while thinking – “How rude of you to point that out, like it’s really any of YOUR business, I’m simply in front of you in the grocery store!”) I’d tell themÂ some brief informationÂ and move on. But I learned from another WS mom to embrace those as valued opportunities, if they ask – they should be ready to listen! We want to spread the word about WS and we want people to know about it and what it is and how to recognize it. It’s a very rare disease and many children go undiagnosed forÂ years. The more people that know about it,Â the more people can help spot it. So now, if someone asks, I tell them all about it…usually they are like “Oh oh thanks” and ready to walk away before I’m even done, and some … are so intrigued – I know they googled it later.
So for now we wait and enjoy our love bug. I feel happy it’s not his heart. I know this will be painful for him, especially if he brakes a bone because of their current weakness, but he is strong and we know God is watching over him. He’s probably throwing little pillow clouds down when falls… Yep, little C-Man sized pillow clouds.