It's Hard To Blog When You Don't Have A Computer

Ye ole laptop was struck by a gnarly worm or some such malicious thingamabob that I was unable to figure out and I was android phone-only for about six weeks.  It sucked.  What the heck did we do before the interwebs?  Seriously?!
It's been a busy, busy summer 'round here, and frankly, I'm tired of leaving my house.
The creative juices are not quite flowing yet for me to jump back into full blog-irific hilarity, so I'll give you a brief M run-down:
-Confirmed diagnosis of hypoparathyroid disease (a calcium disorder)
-An ACTH stimulation test showed that he tested negative for Addison's Disease, though because he has some symptoms of the disorder (belly pain, low blood pressure, low cortisol and hypoparathyroid disease) we may test again in about a year.
-Didn't like the resident doctor we were seeing at UCSF or her inability to read a chart and see what we'd already been doing with no results, so I switched to Stanford.  Score one for Mom's good judgment.  New resident is a dream; attentive, enthusiastic, and--gasp--actually prescribing treatment that is delivering results!  Calcium number is in the 'much better' range.
-M, unfortunately, has to endure weekly blood draws in order to constantly gauge calcium, phosphorous, and various other levels that my brain can't currently recall.  Thank you, emla cream.  My boy is brave little champ.
-Genetics appointment coming up on September 6th.  We've done very basic genetic testing twice before (the last being over two  years ago), but now that we have a bit more information on the endocrine front, they are going to do some more specific testing.  Our endocrinologist has a strong hunch that he may be diagnosed with DiGeorge Syndrome, but we will see.  It would make sense in many ways.  If any of you reading this have experience with DiGeorge, I would very much like to connect with you!!  Please leave a comment for me, if you would.

Enjoy the last few days of summer to those who haven't started school yet!

Nerves

I am hesitant to post this today, but I think it will help me to hear some positive stories and to get a bit of good mojo in the works for me.

I have had some thyroid trouble since B was born. Though blood tests showed everything to be fine, I have not felt fine in several years. The tough thing about thyroid issues is that just about every symptom I have can be attributed to my daily stress. But something has continued to nag at me, telling me I needed to keep an eye on things.

I decided to make another appointment with an endocrinologist I saw nearly two years ago. I felt like I was dismissed a bit quickly the last time I saw her, but yesterday she really listened to my concerns. Symptoms aside, there was no denying the fact that I have a very enlarged goiter (what, am I 80? Geez!) that is quite visible in my neck. I have constantly swollen lymph nodes in my neck as well as an often hoarse voice which are of great concern to me as well.

I am waiting to hear back about the six (gah!) vials of blood they took from me yesterday, and then I have an ultrasound on Monday morning. The doctor does believe I have some sort of nodule in there, and if the ultrasound shows something, I'll then have a fine needle biopsy done. She speculated that my issues sound like Hashimoto's Disease, which I know is very common and very treatable. Regardless, a Mama just can't help but go over the 'what ifs' and get a little bit nervous.

On the flip side, if they do find something and they can safely treat it, I would be oh-so thrilled to know that I haven't created my own feeling-like-shit destiny over the past few years. And even better...maybe I'll drop these 10 lbs. that have crept up on me from out of the blue! Always have to look on the bright side, eh?

Just to let you know how warped I can be at times, though, I did mention to my husband last night that I sure would be pissed if I ended up having cancer that required chemotherapy treatments to cure. I have painstakingly grown my hair long(ish) for the first time in nearly 20 years, and I'll be damned if I'm going to lose it all in clumps after working so hard to get it like this! Vanity's a bitch, ain't it? But I would rock me some cute freaking wigs if I had to...my friends totally know that I would :)

So just keep me in your thoughts if you have more to spare. I feel like I have needed so much from my friends over the past several years, and I can only hope that I gave enough to each of you before that. This libra needs to keep the scales even, you know!

Seven Minutes In The Life Of M

I was originally thinking of doing a very short entry that read as follows:

Thanks for calling. We're sorry we're not home right now...we've all gone stark-raving mad!

And then I was going to leave you with a short video of my boy making THE.SOUNDS he makes 99.7% of every single day lately that have us all loony, nervous-like wrecks.

But I'm not really good at sticking to my plans. And I'm certainly not very good at being concise and to the point. So when I began shooting my little video on my sweet new, Mino high definition Flip video camera, well, let's just say it turned into a seven-minute documentary that you may or may not feel the need to watch after reading all of this.

I questioned myself for a moment when considering putting this here for such public viewing, but because I know it has helped me numerous times to see videos of other children like M, (whose name I totally spill in the video-doh!), I thought it might be beneficial for some of you readers as well. Not only might you feel oddly reassured that someone else's child has similar mannerisms or sounds to your child, but my close friends and family who don't necessarily see this side of M--or who don't really see M in person at all--can get a little better vantage point of what life can be like around here.

That said, I do feel the need to let you know that M most definitely is more than the sounds, flapping arms, and pacing that you'll see in this 7-minute clip. There are moments of clarity and quiet where he surprises us with a few longed-for words or his amazing, dimply smile. But it seems like with the regression we've seen over the past almost-two-years, our boy offers less and less of what I know is lurking somewhere deep inside him still. He doesn't seem to find much pleasure in any activity other than the occasional book and, of course, movies. We did have a relatively sound-free couple of hours hunting sea glass and pretty rocks at the beach yesterday, but he actually freaked us out a little with his calmness. At one point he was so, so very calm that he just laid on his side in the sand--in a strange s-shape--looking nearly catatonic with his eyes open, but his body frozen. And no, I don't believe he was having any sort of seizure here, (because someone will inevitably ask), but the possibility that some sort of seizures may be occurring completely without our notice is starting to nip at my awareness.

*If any of you readers have discovered that your child is/was having seizures that you were unaware of, please, please let me know. I am very aware of what 'absent seizures' look like and know that M has never had one of these...but what if there are other types of seizures that have slowly damaged his brain over the last two years without any of us realizing it?

Well, before I start heading off on another tangent, here is the video from this evening...and the reason that the other half and I just might be a tiny bit more tense than usual lately...

Symptoms Of Parenting A Child With Special Needs

Hop on over to Hopeful Parents to read my latest blog entry!