Maybe the craziness is over :) I guess we need to define "crazy." Brooke's appt went well on Monday. The poor MD had never seen her before so he was a bit overwhelmed by trying to read her chart and know where to start. Steve and I gave him the cliff note version but that's not always good enough for an MD's mind. He asked if we know what gene actually caused all these problems, because he's seen these diagnosis but not all in 1 kid. hehehe! We told him if he had extra time research away, but we are at the point, to just fix the current problems at hand. We don't need a diagnosis, we just know this is how God made her and she's so cute how could you not just love her!!! So he was going to "network." That means talk to her other MD's involved, set up some ultrasounds of her kidneys and abdomen and see him again in 4 months. He is following up with ultrasounds and tests that were done when we were inpatient. That seems like so long ago. It currently isn't causing problems so, no worries :)My doctor "claims" my reflexes are slower so my thyroid is "slowing down." Since I don't have one that would make sense, but I don't really need my reflexes right :) I refuse to slow down and claim it's mind over matter. So I carry on. I am on the thyroid supplement and get levels checked in 3 weeks. I have been able to do my running and keep up with the girls so I am happy. SOOOO, the whole running thing?!?! In February I signed up for a 1/2 Marathon in Chicago. It is for a good cause that has support my kids through all of Brooke's issues, making them feel so important and letting them know it's ok to feel sad, mad, happy etc. Great program called SuperSibs!! So, my "mind over matter" is my self talk that I can do this :) Steve told me to quit, but that didn't sound like fun. I went 5 miles this weekend and realized 13.1 miles is a LONG LONG LONG way. :) But it doesn't take coordination so I should be ok. All I have to do is talk to myself to 13.1 miles and keep moving :) My sister in law is a marathon runner, crazy loon. Just kidding Lisa! She is my inspiration and also my back up plan. If I cannot do it, she obviously can :) Thanks Lisa, Love you! But I don't plan on having you run it :) However it puts my husband at ease to know that there is a plan. I'll post the link if anyone wants to look at my "SuperSib page."
Brooke's next appts are Tuesday. Have a great week. Enjoy this beautiful weather!!!
1 comment:
Hi Shelly~ I am so glad I came across your blog last fall. My son was diagnosed with a genetic disorder causing bone marrow failure and needed a transplant. I was googling broviac of all things and it led me to you. I believe, of course, it was God who led me there. We are actually from Zeeland and I am guessing you don't live to far away from some of the things mentioned. We too go to HDVCH in GR. Anyway you are such an inspiration and when I read your comments about "what else" I could so relate. It's hard to choose joy, but it is a choice! I just wanted to say thank-you for sharing. I hope you don't think I'm wierd, since we don't know each other. God Bless you and your beautiful family. Sincerely, Stacy VanSingel
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