News, news, and more news!

Well, I guess the first order of business is announcing our newest addition! Kender Allyn Hunt was born at home on July 22, 2008, weighing in at 10 pounds 8 ounces. He's a big chunky monkey, just like his big brothers were, and everybody just loves him. We named him after the Allyn branch of my mother's ancestors, who we recently found out actually come from Vermontville, Michigan, just up the road from where we live now.

Second order of business is the discovery of a genetic mutation in our family. Most of you are aware that Brian has been blind from birth. He was told his whole life that it was not genetic. This was repeated when Brian's old pediatric ophthalmologist examined the triplets in the hospital, he said there was no way they could have gotten it.

Fast forward to Kender. By two months, he was not showing any signs of seeing anything, no age-appropriate tracking, no smiling on seeing people (although he smiled for kisses and cuddles), etc. Then I noticed some white stuff in his eyes; if you looked in at an angle, with the light right, you could see all this white around the inside edges of his eyes. Because this can be a warning sign of retinoblastoma, a dangerous cancer, we were able to get an immediate appointment for him at the Kellogg Eye Center. They ruled out the cancer, but said there was a definite problem, either PHPV or FEVR, and got us an appointment with Dr. Trese for an anesthetized exam the next week.

Dr. Michael Trese is the world's leading specialist in retinal diseases, especially in children. People come from all over the world to see him; I have spoken with patients from Australia, New Zealand, the Carribbean, etc., and often their insurance pays for the trips, that's how good this guy is. He looked at Kender's eyes under anesthesia and diagnosed him with stage IV FEVR. FEVR stands for Familial Exudative Vitreo-Retinopathy, a genetic condition that leads to the full spectrum of eye problems that Brian has. At the first exam, Dr. Trese found that Kender's right eye had a fold that was covering the back of his lens, and he went in surgically and peeled that away. The left eye had a fold, but the lens was clear, so he did lasering to the retina in that eye to prevent exudate, or leakage of blood vessels, which is one of the primary ways this disease progresses. Kender has no discernible fovea and little macula, areas of the eye with high concentrations of cells used for focal vision. He also has poor vascularization of the retina. Dr. Trese says he is certainly legally blind. He has light perception, but whether he has more than that we won't know until he is older. He may have "ambulatory" vision, which is about what Brian has. Finally, they drew blood on him for gene testing.

At follow-up exams, Dr. Trese confirmed a FEVR diagnosis for Brian and found no signs of the disease in either Brian's parents or myself. The four older kids were screened in the office. Brenden had stage I FEVR, but still has perfect vision, so needs to be monitored every few months in the office for progression. Liam has no signs of the disease. Tamara and Caitlin both had signs of retinal changes and exudate, and they were scheduled for anesthetized exams along with Jarod, who is too young to examine in the office. Kender developed a rapidly progressing cataract in his right eye after his first surgery, and he was scheduled for exam/surgery the same day as the other three.

Dr. Trese's exam of Brian also showed that his lens implant had become encapsulated, meaning that scar tissue was growing on and around it. This was causing some of the decrease in vision he had noticed in recent years. Dr. Trese recommend he get a YAG laser procedure done to clear out some of that encapsulation. He had that done about two weeks ago, and is seeing much better now. Not clearer, but it's the difference between looking through a veil and then having that veil taken away, and he's been wandering around the house asking, "How long has THAT spot been there?" :)

Tamara, Caitlin, Jarod, and Kender had surgical exams last Monday. Tamara has stage II FEVR in both eyes, with lattice stresses on the retina which are at high risk for tearing. She had lasering on both eyes. Caitlin also has stage II FEVR with evidence of past exudate and minor folds around the edges of the eyes, and she also had lasering in both eyes. Jarod has stage III/IV FEVR. He has a fold in the left eye which extends into the fovea, and extensive folds and exudate in the right eye. He had lasering, and next month he will need to have a vitrectomy to remove cloudy fluid from his left eye. Kender's cataract had developed to the point of being opaque, so he had a lensectomy in his right eye, along with a vitrectomy, and is still recovering from that. Next month he will be fitted for a contact lens; he can't have a lens implant because of what happened to Brian's implant (Brian would not have received an implant at all if they had known he had FEVR at the time). Also, Kender's genetic test came back positive for the frizzled-4 mutation, an autosomal dominant FEVR mutation, which explains the huge penetration into our family. It's also the rarest mutation causing this extremely rare eye condition. All of the other children are now being tested to see if they have this same gene (most likely).

It looks like we have two blind children, two that very well could go blind at any time, and at least one more with a chance of losing vision. We are so far averaging 2 surgeries per month, at a cost of $26,000 per surgery, with I think 10% not covered by insurance (bills are just starting to roll in). And we currently live in a state with no School for the Blind and below-adequate mobility training resources; the things I see blind people doing with canes makes me afraid to let Kender or Jarod anywhere near the system here! We desperately want to move back to Texas now, preferably before Kender turns 5, but with medical expenses now eating up what little disposable income we have, I don't know if we will succeed. I want to be financially secure before risking Brian losing his great job; I want all bills paid, the car paid, and the house at least paid down significantly. I have taken on two jobs now myself to help bring in more money, and between that and making the 2-hour drive into Detroit every week (sometimes every other day!) I don't know whether I'm coming or going! But we're hanging in, just taking it one day at a time for now.

We named him Kender because he was unplanned. Kender is the name of a race of humanoids in the Dragonlance novels. They are diminutive, about the size of a human child when full grown. They are playful, they love to play practical jokes, they have no sense of private property, and they are extremely inquisitive. They also have a heart of gold. As I said, we gave that name to Kender because he came to us on his own, unexpectedly, and it seemed like a practical joke at the time. Now it seems that his coming may have saved some vision for the rest of the family, by being the catalyst for this diagnosis in everybody, prompting us to be inquisitive and learn more. His coming has truly been a blessing in disguise.

Grill Infestation

It's just one of those things you have to deal with when you have a grill outside that sits unused for a season. Every spring, something will have invaded, and you have to chase it out before you can use your grill again. Every year here in Michigan, it's been wasps. They crawl into the main grill space, even into the legs through the bolt holes, and I have to go out there and hose the thing down with wasp spray before I can use it.

So I went outside this afternoon with the wasp spray, intending to do the deed so we could grill some steaks for dinner tonight. Imagine my surprise when I opened the grill and found this:



So I guess we won't be grilling for a while. I may be willing to commit genocide on wasps (hey, it's them or us, we have fatal allergies in the house), but the birds get to stay.

I don't know HOW I'm going to get the grill clean enough to use again, though...

Swimming Lessons

Today was the last day of the big kids' first session of swimming lessons. The boys missed out because they are still sick (and I wish I had stayed home!), but the girls were able to go. Caitlin officially graduated level 1, complete with a Red Cross certificate, so next session she will be in the level 2 class with Tamara. The boys are still in level 1. Yay Caitlin!

Back to School

Well, it's time to announce it to the world. Brenden, Tamara, Caitlin, and Liam will be starting school this fall at Cedar St. Elementary here in Mason. Elayne's fibromyalgia has gotten to the point that she can barely keep up, and while we really feel that a change in climate would help, financially it's not possible at this time. So the kids will go into school, and Elayne will ramp back up on working from home, saving up the funds to make the move to a better place. Elayne is not happy about this at all, but the option is always there to pull them back out if things don't go well. The triplets will be heading into third grade, while Liam will be entering Kindergarten. Wish them luck!

To a beautiful lady

Margaret Elayne Buck Yard passed away last Friday night. She was a wonderful woman who gave everything to her family. She made all of us feel welcome at her home anytime, even those of us who weren't born to her family. She loved to create things. I always remember her as making something, ceramics, porcelain, crochet, handmade dolls, clothing. She taught me some of those skills. I missed out on others. She made the best shrimp gumbo in the world, and I learned that recipe from her, as she learned it from her daddy. My mother and her brothers remembered her spirit. She loved Betty Boop, and they placed one of her Betty Boop dolls with her at the funeral. Everyone had something wonderful to say about her.

Elayne made it just past the Missouri state line when she got the news. Brian had to stay home because of the work he missed in the hospital, so Elayne made this emergency drive by herself, with all of the kids. She pushed through anyway, to be there for her mother and to help with the funeral, and made it to Houston by late Saturday night. Sunday she had to replace the brakes on the van, though, because she'd made the entire drive without brake pads on one rotor. The wake was Monday night at Wanda's home; Wanda is now the last surviving member of Margaret's generation, the new "matriarch" of the family. Tuesday was the funeral.

Elayne will be staying in Texas until Monday or Tuesday. We can only manage one trip home each year, so this is it. She'll be heading over to San Antonio Friday and Saturday so the kids can see their Hunt relatives, and the rest of the time she'll be in Houston with her mother. At least the drive home will be freer from time pressure, so maybe a little less stressful on everybody.

Bad luck

We've definitely had our share of bad luck around here. We could certainly use some happy vibes, helpful prayers, magick spells, or anything else you want to throw our way, before anything else happens. I know I haven't posted in a while. It's been crazy, and our domain forwarding was down for a while anyway. Here's the scoop:

After Tamara broke her finger, Brian got sick. Really sick. He went to the ER, and got sent home. So he went back to another ER, at another hospital, the next day. They sent him home. So he went back to a third ER, at a third hospital, on the third day. They finally admitted him, and kept him for four days. Elayne's dad was kind enough to fly out and help out for a week while Brian recuperated. He helped entertain the kids a bit with some geocaching, among other things.

A few days after Brian got home from the hospital, Elayne got rear-ended while driving for work. I was stopped at a stop sign, and this guy slammed right into me. Said he didn't see me. Now for those of you who don't know, this is what I drive now:
Could it get any bigger???? Do I need to paint some neon stripes along the back so you can see me now??? So now Elayne has whiplash, which has caused her fibromyalgia to flare up as well, so every couple of days some new organ system decides to start screaming, in addition to the head and neck...and no pain killers. Nice. Can you see me now?

Well, we thought, hey, bad luck comes in threes, must be done, right? All this time, though, Elayne's grandmother has been getting sicker and sicker, and it looks like she may not make it much longer. So Elayne and the kids are packing up this week to head on down to Texas for a visit. Please send all your best wishes for a safe trip, and also for a comfortable, happy passing at home for a wonderful lady who has had a long life and who has been loved and cherished by all who have known her.

Pray for Aunt Marianna

My Aunt Marianna has been diagnosed with non-Hodgkin's lymphoma, stage 3. She's going to be starting chemotherapy soon. She is almost as far away as the rest of my family is, in Atlanta, so I can't visit her, either. I can't send flowers because she's become too sensitive. But the kids are sending get-well cards, and my dad has posted a website where well-wishes and prayers can be left: http://www.caringbridge.org/cb/viewJournal.do?method=executeInit