Tuesday, April 28, 2009

Sorry I've been MIA

Been going through my (hopefully) last go around with testing before my appointment with the world renown Dr. Castells. I had emailed her asking what tests she'd like to see prior to my coming up there since I am doing this trip out of pocket and would rather have my testing done and paid for by insurance.

So my list is as follows....

Blood Work
24 Hour Urinalysis
Bone Marrow Biopsy
Bone Scan
CT Scan (with and without contrast)
Skin Punch (can't wait to get these fucking stitches out already).

Now we wait for the results (bone scan normal) and we have our appointment at the end of May.

_______________________________________________________________________________________________________ Now on to the important things... Dylan

OMG he's getting so big! I can't believe he's going to be 4 soon. He amazes me every day with his intelligence, his beauty and his humor. Just when I think I can't possibly love him more... I realize I do.

Today we had our final meeting for IEP services. He's going to receive speech and behavior therapy. He's starting a new day care center and then a week later will begin to receive his services. I'm a total basket case. I think the transition will be harder on me than on him.

The teachers at his new day care center are heartbroken. I can't say I blame them.

Friday, April 03, 2009

Having a hard time wrapping my head around things

You know... most people who have a chronic condition or a disease, there is a process. If you are suspected of having a tumor, they do a biopsy. If they find "x" kinds of cells, that means it's malignant and you have cancer and treat it with a number of different things. If they find "y" cells, it's benign and you just keep an eye on it. If your husband has low sperm count and poor morphology and you have a high FsH chances are you're not getting knocked up naturally, if at all.

I get that... diseases and their processes usually make a lot of sense to me. This mastocytosis bullshit??? Not so much. Trying to understand why one person's levels are so much lesser than mine yet she can't leave her house otherwise she shocks. I'm trying very hard not to obsess about this... I really am. But I'm failing miserably. I want to understand this. I want to know what this all means. Unfortunately, I think I'm going to have to wait until I meet with Dr. Castells at the end of May (blech).

Oh, I emailed her yesterday and asked if she wants me to have any other tests prior to seeing her. I need to get an abdominal CT and a densitometry (off to google that one). I love my regular doctor. She is amazing. The most caring doctor I have ever met in my life. Everyone I have sent to her is just blown away by her. It's like you are working with a friend, not a doctor. I forwarded the email to her to set up the tests (or issue the prescriptions so I can set up the tests).

OK - ENOUGH WHINING - on to the fun stuff.

Potty training is going really well. Averaging 1 accident a day. Seems to be a poop issue. He doesn't want to poop in the potty but he has gotten much better about sitting on the potty for a spell. Yesterday, he had no accidents but we aren't sure if it's a Dylan didn't poop at all yesterday or a Dylan pooped on the potty and no one told us. Oh well, I asked the teacher to check w/the teacher who worked w/him yesterday and to just make a note as to whether or not he did. I don't want to end up with a backed up boy.