Tuesday, May 10, 2005

Well I figured it was time for an update. I guess I’ve been putting it off because it all gets a little overwhelming sometimes. Let’s see- I’ll start with the kids…

Big B- is still on the Calcitrol. His last few blood tests have come back low on the calcium. The last one DID show that his parathyroid(s) is/are working so that’s something at least. He’s doing fine on the thyroid meds so far (88mg Levoxyl daily) and doesn’t seem to be having any problems showing that we need to up his dosage. He’s also now taking three Tums a day for calcium plus I’m making sure he gets around 1500mg total per day of calcium through the Tums, milk, cheese, calcium fortified orange juice, and the like. He had more blood drawn today so hopefully we will get those results back in the next day or two and they will be good.

His scar is healing and he seems to be okay with it. He doesn’t act embarrassed and has even taken a sense of humor about it telling some people at school (once he got tired of repeating what he had done over and over) that he got cut protecting his family in Atlanta when some guy tried to steal my purse. LMAO.

Sis- her calcium levels seem to be doing okay and she’s taking two Tums per day plus I make sure she gets around 1300mg of calcium total each day. She had bloodwork done today as well so I’m hoping her’s continues to come back normal/okay. She seems to be doing okay on the thyroid meds (50mg Levoxyl daily) but for the past week or two she seems to be getting these headaches that make her go pale for awhile. I’m not sure what is causing them. Sometimes lying down helps and other times it helps if I have her eat something. Of course, I can’t get any answers from anyone who is SUPPOSE to be a doctor. I’m so sick of that crap. Really I am.

Her scar is healing except she says it hurts/pulls sometimes on the left corner. I checked it and it feels like some scar tissue there that might just be sore. Hopefully time will take care of it but it too will be getting checked. Her voice is coming back. She doesn’t sound too bad now except for when she laughs. THAT is just horrible the poor kid. Vin says she sounds like Fran Dressar when she laughs but no… it’s like Fran with a sore throat. :( I’m hoping in time she gets a normal laugh back as well.

Both children have an appointment with Dr. L on May 17th and I will be getting EVERYTHING checked at that time. I have decided to have the children tested to find out how many parathyroid they each truly have. I have talked to two more doctors since Dr. G’s email and both have told me that with as small as a child’s parathyroid is that they have a hard time understanding how you could just scrape off some of the tissue. In other words, they think he’s full of it. I’ve reviewed the medical records I have and in the pathology reports they say the samples are parathyroids NOT tissues. In the dictation of the surgery it says the left upper and right upper parathyroid of each child was left intact. Well… I want to know what happened to the LOWER parathyroids. I figure an ultrasound, CT scan, or MRI will show us what exactly is there.

I hope for Dr. G’s sake my children still have ALL their parathyroid because I have saved EVERYTHING and will be consulting a lawyer if not. I’m not big on suing but at this point in our lives I’m not willing to walk away when it comes to my children.

At the appointment with Dr L I’m also going to address the headaches that Sis has, the paleness, get copies of all their test results because I’m tired of hearing “the results came back FINE” whenever I ask for test results, arrange the test for the kids to find out about the parathyroids, and whatever else I need to do.

Tomorrow I will update on myself. I just wanted to make sure I got down everything on the children while I could still remember it.

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