Rain, Rain...

...Get outta here.

Our brief reprieve seems to be over. It's been pouring here, off and mostly on, for about seven years now. Or so it seems. We just closed up the GST (garage sale tent) so it wouldn't get all re-soggified after airing out this morning.

Pardon me for sounding a little hysterical, but this business of unending July rain is hideous. Oh, you say, you live in the Northwest, you're used to rain. Not like this, I'm not. Ahem.

No. This is summer. This is when it doesn't rain, sometimes for weeks and weeks. This is when the little green tomatoes turn all blushy and happy and make us swoon. This is when the bees and butterflies and dragonflies and birdies are out dancing all over the garden and seem just a little high on flower nectar.

I was out on the swing with Q earlier. When we looked up to spot the Canadian Goose group that was flying over, I expected them to be flying south. They weren't, but I don't know why not.

Snort.

Oh well. Perhaps this is the Almighty telling me to get my crud together where I can: indoors.

We've been digging out here. Thus the desert period in blog posting and the genesis of the GST. I'm t.i.r.e.d. of sorting, hauling, tossing. I'm loving the results--room for Q's indoor therapy swing to really, you know, swing. Plus, as the boy gets bigger, there's more and more equipment with which to consume floor space.

This is the point where I wish I could afford a 6,000 square foot house all my own so we could dedicate at least a whole room to Q's therapy/play stuff, so we could stay better out of my poor parents' hair, and so the kids could have a little space between each of them. The girls are growing and E especially is feeling the need to fly more solo. Q's crib and my bed take up most of the room in our shared room, so it's usually a casually organized mess.

Sigh.

I don't want to whine, so I won't. We're better than fine. We've got lots of room to play, indoors and out. We've got great food, cozy shelter, lovely beds, fantastic friends and family, books galore, pretty colors on the walls and pre-adolescent humor running rife. Woo. Hoo.

Perhaps the thing which currently rankles most is that Monday we'll be back in court. The agenda is Child Custody and Visitation, and Support issues. I'd thought (hoped) that the custody and visitation issues were more or less resolved, that the only remaining question was follow-through. Apparently, all this makes me jittery. At least the primary side-effect of me being on the verge of fury/panic is that I must clean! Organize! Put away! So things are looking tidier by the hour. By tomorrow night the floor will shine! Nay, glow! The walls will all possess their new coats of paint! (Only the dining room and hallways have been done so far.) There won't be a stray thread or dead bumblebee anywhere on the planet! Ha!!

Or the stress will abate. Either way, who cares. It'll still be raining. Last I heard, flash floods are expected tomorrow. Wheee.

Hee

I've been messing with the blog settings. I'm thinking of this as the summer look. And I'm dreaming of the day when I'll magically have the know-how to have a luverly, customized template thingy which I will of course create from thin air and my magical supply of fairy dust. You'll have to wait, though. The fairy dust is being collected from the laundry as I find it in pockets and stuff, so, you know, that could take awhile.

Do something

The Estes family are being fund-raised. Here is a link that will last only until the fourteenth of July. It's an offer of homeschool ebooks and resources in exchange for a minimum donation of $27. Whether you want to help this way or in some other, consider it. 'Tis a wretched, wretched thing to have your baby so ill and suffering.

Thank you

I've run across a family that could use your prayers. They have seven kids, homeschool, and the baby is having some pretty major issues. It's both a blessing and a little eerie to run across folks facing some of the same big issues we are. Their little Noah will be having a biopsy to diagnose a probable mitochondrial disease. Interestingly, just this week Q's geneticist raised the possibility of a mitochondrial issue. This because of Q's growth pattern in comparison to his siblings. He's gained about 8 ounces since February.

In reading their story, it struck me that I haven't posted a gratitude list here in awhile. I keep them on notebook paper or in blank books next to my bed, but it's past time to share here as well. Here goes.

Having five awesome kids. I'm sometimes still surprised that they're all mine and this life I'm leading is really mine. I am a blessed mama to have friends and family (lots and lots of friends and family) who support me in being with the kids full-time. With all that Q has going on, homeschooling has become especially precious, allowing me more time with and tailoring of particular details to each of the kids individually.

Miracles. Every day something manifests that has no logical reason to show up the way it does. Last year's tuition for the kids, whole curricula packages for next year, help when and where it's needed most. I am constantly astounded at the way Grace appears. I find this so compelling that I often think about t-shirts and bumper stickers that would share the message.

A roof, four walls, cozy beds, parents who tolerate me and my noisy brood. I am grateful to have a safe and loving place for us to be. And that what is now our home, a place we used to just visit, as noted by G, is far more than mere basics. The yard is great, the garden is huge, the chickens are growing, the Christmas present play equipment is heavily used. Much of this represents a child's Nirvana. Awesome.

Resources. OT, PT, Speech, Early Intervention, Community Health Nurse, various developmental agencies. We have great people, sweet, kind and lovely people, who enjoy Q, know their stuff, and work so hard at what they do so well.

The little van. It runs, it has seat belts, it's in great shape for having nearly 143,000 miles on it. We have transportation for the doctor visits, therapies, church, and fun activities, and it gets around 21 mpg almost all of the time. Astounding.

Sarah in FL who sent me sheet music I was looking for. One never knows, does one? Thank you, Sarah. I'm enjoying it immensely--every time I sit down to it, it reinforces my above take on grace.

My in-laws. I cannot express how much it has meant with all the craziness surrounding Q's diagnostic process, therapies, misc. medical crud, and the more usual issues the other kids are having--being children, after all--to have extended family just rise to the occasion, be there, as it were, when things are plain awful otherwise. The more typical response in these circumstances would not entail folks putting themselves out there as you have. Your efforts are a representation of Christ on earth. I am grateful beyond words.

Chocolate. Seriously. Good, dark chocolate. It's rarity, both in quality and dosing (hee), makes it that much more precious.

I'll have more later. I've got to get Q's Trileptal refilled this morning and some paperwork done so he can continue to have medical coverage. Little details, huh?

Blessings, grace and peace to you and yours.

Independence Day

Q had his follow-up with Genetics yesterday. I think I love his doctor. She's sweet, funny, off the charts smart, and happy to spend time handling things as best she can. We were with her for about two hours yesterday. It was supposed to have been a short check-up, so we missed his Speech appointment.

When she asked if there was anything else I'd like to know or ask, I brought up the fact that what I've seen of Dr. Dobyns' report could use a little interpreting. Not, as she noted, for his unique brand of abbreviations. Rather, many parents have a more specific diagnosis for their child: Bi-parietal Perisylvian Polymicrogyria being among them. There are seemingly a gazillion subcategories and as of yet, no one has mentioned one in relationship to Q.

She talked about what researchers know about PMG and it's markers. Children born with smaller head size (microcephaly) tend to have a harder time, more "issues". With a head size of -3%, microcephaly is one of Q's labels. Q's PMG isn't restricted to the perisylvian region--the area between the temporal and parietal lobes. His is what would be called "diffuse" PMG because it's basically everywhere but in the anterior of his frontal lobe. Other types have more specific effects--speech, swallowing, motor planning. When looking at other children with similar markers of PMG, Q's prognosis looks rather difficult, to understate it a bit.

There was one other particular item which the geneticist mentioned, I can't remember what it was. Maybe the vermis? I don't remember what she said about that. She did mention that the opinions on the presence of the corpus callosum vary--neuro, genetics, and pediatric neuro-radiology all think it's there, in some small part at least. I believe Dr. Dobyns thought it was missing? Either way, it could be a big deal, could be nothing. By itself it would determine nothing, but in addition to all the other issues, it certainly doesn't help.

She had asked when she first came into the room how I thought Q was doing. I had said, "Very well, under the circumstances." By the end of the visit, she said she agreed--he's so far surpassing what the scans and research indicate he should be doing. Especially the sweet personality, desire to interact, ability to react to stimuli, noticing and appreciating particular people, loving stories, being thrilled to play the piano, talking to the organ at church, vocalizing appropriately...

One thing I don't know quite how to handle--we're assuming that his intelligence is much closer to normal than predicted. He's clearly curious, interested, wanting to play. He's almost eighteen months old now. Any other eighteen month-old would be all over the place, into everything, learning via experience--making messes, really. Q's motor skills, motor planning, spasticity, keep him from being able to just go after what he wants. His vision limits him too. So how do I keep this little guy entertained? How do I get him working at stuff? How do I make sure that he has the proper stimulation while also mothering his four siblings? Something to take up with OT and PT, I suppose.

His growth curves showed a small uptick. At least they're a tiny bit less flat than they have been. So. I guess I just keep doing what I'm doing? Praying. And stirring a little fat, a little DHA, a little Omega 3 into whatever I can? He's finally eating and keeping down three meals a day, plus nursing several times in between and at night.

K, the biggest of the kids, percentage-wise, just measured 95th for weight and over 100th for height, so I mentioned to the geneticist that Q's growth concerns me a bit--25th for weight and 60th for height is a little off what I would expect it to be, based on the other kids' curves. She indicated that sometimes kids with PMG have smaller stature because of the way their brain is affected. She also said that she doesn't know if his brain is affected that same way.

We talked about further genetic testing. At some point, it may be helpful for the researchers to have samples of Q's parents. There are arrays that can be done that reveal much, not just for Q but for others who haven't been born yet. I've kind of always thought that it's a sacred responsibility to volunteer oneself however one can in the way of research, education, etc. If I can make the crud we're handling into something good for someone else, a little brick in the great big building of understanding, then I feel like it's not all for nothing, you know?

We updated the family tree. Our new little boy cousin has the same 2-3 (toe) syndactyly that G has. G claims that a little webbing there makes him swim faster. No one else in the family has it, but the nice doc said it can actually be a dominant trait. Huh. Who knew?

I don't know what to make of all this. The Genetics notes are great--the last one was 6 pages long and specific. So when that arrives, I should know more. Also, Dr. Dobyns is expected to be back in touch with our geneticist before she completes her note so I hope to know more from that front as well.

So. Today we celebrate the independence of our nation. We blow stuff up, ooh and ah, and remember our beginnings. The struggles our infant country had to become a sovereign nation. We plan to celebrate by eating too much homemade ice cream, finishing with the durned linen closet, shedding some quiet tears at the patriotic music playing with the fireworks. I'll be talking to the kids about sacrifice, struggle, what it meant to the men who signed the Declaration of Independence to put their names to that document.

If you're at a loss as to how to celebrate your freedom with some sense of meaning, may I suggest that you check into the recent goings on at Amnesty International or ADRA? The Red Cross, Doctors Without Borders, your local shelters or military installation could use your appreciation for your freedom, however you choose to show it. I'm sure donations are always welcome, as are words of gratitude.

Also, on a more navel-gazing sort of level--how about thinking some on what you personally could use a little less dependence upon? I know I've been giving this some thought lately. I think we can all re-evaluate our habits from time to time and trash the ones that don't serve us so well anymore, you know? Out with the old, in with the new, happy Independence Day to you. (Yes, it's bad. I also can't spell to save my life today. Bleah.)

We are lucky people to have been born where we were. We are lucky, and blessed.

May God Bless America, and all his disenfranchised children, too.

Happy July

Eh. Hello. My name is C and I'm suffering from a disease I like to affectionately refer to as: Idon'twannadowhatI'msupposedtobedoing syndrome. Cute, huh?

I should be pulling the rest of the stuff out of the linen closet or sorting stuff out of boxes for our apparently mythical garage sale, but I've hit the wall. I'm tired, my throat is itchy, and everyone, yes everyone but me, is on meds for strep. What kind of odds do you give me?

Yeah. So I'm going to go pick up a scrip for Zithromax and pray that it kicks the green crud in my throat and that I get my energy back overnight--before I have a post-op follow up, Q's Genetics follow-up, piano lessons, and Speech for Q. Gasp. Just thinking about it all is giving me hives. I think I'll log about 140 miles in the poor little Windstar tomorrow.

But hey, it's all good. When was the last time you thanked God for the nice people who pioneered the work in antibiotics? I've done some of that lately. How about saying a prayer for all the people who put in long days doing medical research now? And their families. God bless them.

And you.

Mwaa!