When Lightning Strikes...

Ah, yes. We are a very lucky family.

Two days ago, the rain came down like the earth was a giant hourglass tipped upside down and the ocean was pouring down on us. Lightning touched down all around us as I drove Hannah after school. I gripped the steering wheel so hard I thought my fingers would melt right into the leather. But I smiled through it, for my daughter's sake, and acted like it was no big deal.

The water collected on the streets in a matter of seconds and the traffic crawled along the freeway. Cars in front of me spewed water up from their tires, splashing the windshield so badly I couldn't see. I was amazed the roof of the car didn't cave in from the onslaught of water as it pelted us like rocks dumped from a bucket. The wind drove the water across the pavement in sheets.

I stopped off at the gym to meet a friend for a workout, scooping H out of the car and into my arms to run through the rain, my feet splashing through the water, drenching my lower legs. By the time I walked into the lobby, I looked like I'd gotten a very good workout and I hadn't even stepped foot on the treadmill.

When I left the gym, I tried calling home but got no answer - it went straight to voicemail. I called back twice more.  Nada. Finally, I called my aunt's cell phone and heard my husband's voice on the other end.

When he told my why the phone wasn't working, I thought he was joking.While I was out driving through the wet muck, one of the lightning bolts off in the distance staggered down and in a flash, slipped its bright-white finger through the opening of our chimney, exploding light in our fireplace, spewing light out of the steel gas knob, and tripping six of our breakers - anything with GFI outlets. It also fried our modem, and our digital home phone still doesn't work.

What the heck?

We just can't seem to get it right. First, we have a birthday party and lose all power, then we have a storm and get too much power.  At least no one was harmed in the process and we know how to laugh in crazy situations.

No Answers Yet

We are still waiting for answers on most of C's medical tests. The BMB went well - but at the time his ANC was pretty low and he needed his Neupogen injection right after. He did great and took his time waking up in recovery.

We had to wake him up the morning of his BMB. He's not happy.
I kept having this feeling of "if only he knew..."

Recovery.
The hematologist's office has these cool "treatment" rooms for chemo and other IV infusions.
They are painted with all sorts of themes and have beds and tvs with video games.

Getting his IV taken out.

His bone marrow looked good - it had the right amount of cells in it, including neutrophils. And the doc had a nurse call before the weekend to tell us there are no signs of leukemia. Thank God. So now the question is why are his little defense cells not leaving his marrow to circulate in his blood stream quickly enough? They don't do him any good if they don't come out to fight. In the meantime, we have to keep up the shots twice a week because his body is still struggling to protect itself. A nurse pointed out that he is the boy in the bubble, except with the new miracle of Neupogen injections to keep him safe and healthy. We are waiting for chromosome results and stool test. Maybe the stool will tell us something. This has been a long road and I'm tired lately. Tired of doctors, tests, waiting... I wish this could all go away. I hate giving the shots, but I know millions of parents have to do this for various reasons. Hematologist keeps reminding me that at least we're keeping him out of the hospital. I couldn't agree more.

The nurse is very nice. She does a great job with C and her presence has been extremely helpful. We are trying to work with J on behavior and sleep, so having the nurse here is helping me focus more on J. Sometimes I feel very confused because I'm not sure how hard to push, how stern to be. She sits and twists the bottom of her shirt in her fingers over and over and over and her eyes dilate and get this glassy sheen and I wonder if she understands that I just want her to learn to sleep in her own room, or stay next to mommy when we're out and about so I don't lose her or she doesn't run off and get hurt. She still doesn't understand danger and she still has a hard time sitting and doing an activity for more than a few minutes at a time.I wonder if Cortical Visual Impairment (CVI) plays a factor in her focus.  You can't enjoy what you can't see.

In addition, J is starting to bruise easily and is having more trouble with loose stool. Can't help wondering if we're missing something here... pedi wants to do a CBC, but we decided to hold off in case we find something with C and can test J for that at the same time. Pedi still thinks all three kids are linked. H is starting to have flaring skin problems again. Ugh. I am dreaming of a good night's sleep right now...

Motherhood is such a challenging job sometimes.

On another note: we had more friends move out here from Cali!!! We made them dinner when they arrived this weekend and it's great to have more "friends with history" out here. But already, we have made so many friends out here that we have been keeping quite busy. It's been nice to go, go, go and not think a lot :) Three of my friends have been working out together and they recruited me to their gym so finally, I will have people to work out with and they tell me we are going to go at least three days a week. Maybe that will boost my metabolism so I feel better too. And girl gab sessions will be an added bonus :) Even if I am huffing and puffing at the same time! (START OF LIFE TIME FITNESS!!  YEAH!)

Been having increasing headaches and dizzy spells lately. Jaw is locking and popping more now than ever. Primary doc (yes, I finally, finally went!) says I probably need surgery to cut my jaw bone and realign my lower jaw with my upper. They used to wire your mouth shut when they did this. That would be funny in this household. Now they put metal plates in your head to hold the bones together. Orthodontist is also ready to refer me to oral/maxillary surgeon for the jaw and did I mention I might be getting braces again?

Will post C's results as we get them. Should be trickling in this week. Speaking of this week...H starts school on Wed. J starts on Mon. Can't wait to get back on a regular schedule. And we have a new nickname for C. He is Mr. Mumbles Magoo. He wanders the house and mumbles/hums deep in his throat. No words yet and he'll be two next month. A little concerning, but he's so darn cute and he has the most beautiful smile.

I'm counting our blessings.

Bone Marrow Biopsy

Tomorrow is bone marrow biopsy day. Geez, we need to get it done already! I'm so nervous. We could actually find out more about what is happening inside the mysterious nether-regions of C's marrow and circulatory system. Craig and I are both going together, so I feel much better about the whole thing, but the past few days have been pretty difficult.

First, we started the 72 hour fecal fat test, except there wasn't enough fecal to measure the fat. C never has solid stool; it's always pea-green and runny, or the consistency of a smoothie. I must be losing my mind, associating something edible to my son's poo. Well, it's been a long week already and it's only Tuesday. Anyways, his poo always smells like rank and moldy bread, like when it's left in a tupperware container for too long in a hot vehicle (not that Craig does this or anything...).

So we stretched out 72 hours to a whopping five days. The lab says they think they can use day 2, day 3 and the special add-on, but day 1 might be too old by now. Well, crap! haha.  We tried. This test will be used to indicate if C has a problem with his pancreas and digesting food.

Monday morning we took C in for what the doctor described as a "skeletal survey." Basically, he had to be held in place as he fought like crazy and in some cases his limbs had to be strapped down with tape to get several x-rays that would show his entire body skeleton. And I know I mentioned my concerns about stopping his Neupogen in my last post, but another medication we stopped was his daily doses of Acyclovir. He'd been on it for two months as a hopeful means to suppress his "Cold Sore Virus" outbreaks. Well, it worked. Obviously so because on Mon morning I noticed a crop of blisters popping up underneath the meaty flesh at the base of C's thumb. By Mon afternoon, they were humongous. So now he has HSV-1 again (cold sore virus) on his hand, it looks painful as hell, and I fear another hospitalization if the meds don't contain it and GET IT GONE. When I got occasional cold sores as a little kid, I never, ever imagined they could torment someone like they torment our little guy. And not just on the mouth either, but on the eye, the thumb, the thigh, the ankle.... oh, yeah. This stuff is not fun.

In addition, H scratched herself to bleeding this afternoon and now her flesh is oozing clear fluid again. I'm not sure what this means (possible Staph?) but I have a feeling her skin is going to start getting worse as the weather changes though I really, really hope I'm wrong.

But good news. We are getting nursing help! Hooray! Mondays and Fridays to start, but possibly for 40 HOURS a week. First day is Friday. I couldn't be more relieved. It is so difficult to help C when he is writhing and screaming and agitated and just wants to be held and at the same time care for J's needs and H's attention-demanding attitude. Plus, there is the issue of taking him out in the germ-infested fall and wintertime when all of the viruses run rampant around here. I have so much to run around and do and I don't want to take C out a lot until we know what we are up against and I know he's being treated.

I just know we will get an answer soon and we can begin to help him (and maybe, just maybe, give him a taste of REAL FOOD someday in the near future...). Please keep him in your prayers.

School days, school days... so close, yet SO DARN FAR AWAY. Thanks for checking in. We'll keep ya posted ;) Hope you are all enjoying the last part of the summer!

Till later.