Feb 25, 2012
Support Your Local Farmers!
Today we picked strawberries at First Fruits Hydroponics.
Strawberry picking is so much fun.
Cleaning berries not so much.
Onward to Strawberry Margarita jam making this week.
Produce always tastes better when it comes from local farmers!
Feb 17, 2012
Pamidronate and Hair Gel
The Boy has Osteogenesis Imperfecta or "brittle bone" disease. OI is not really a "bone disease" but rather a type 1 collagen mutation in the majority of cases that causes disruption of collagen production in bones and other tissues. Depending on the type of OI an individual has they may have numerous other symptoms ranging from short stature to deafness to basilar invagination.
The Boy biopsies out as type 3 which is one of the more severe forms of OI. When he was born the fracture estimate for type 3 OI was about 50 per year. Pamidronate reduced those fracture estimates to less than 2 to 4 per year. First begun about 13 years ago at Montreal Shriners, these infusions have the added benefit of also reducing the excruciating bone pain that individuals with OI suffer from on a daily basis and not just when fractured.
The Boy was one of the first children in the United States with OI to receive Pamidronate. He began by being infused every other month for 3 days in a row. These infusions lasted approximately 8 hours per day due to his small size and inability to handle too much IV fluid at once. We followed this schedule for YEARS.
Twelve years later we are still going for infusions but we now go every 4 months for 2 days and the infusions last approximately 5 hours per day.
While grateful for treatment it is frequently a challenge working the infusions in between my job and school aged children's varying classroom and bus schedules. Numerous times over the years I have had to bring the entire family to the hospital because I have not been able to find a sitter while The Boy receives his Pamidronate.
It's been a long 12 years.
This week the monotony of sitting still was broken by Flashes of Hope.
Flashes of Hope is a nonprofit organization that changes the way children with cancer and other life threatening illness see themselves through photography while raising money for pediatric cancer research. Each child is treated to a makeover including hair and makeup and every parent is given gorgeous black and white photographs of their child free of charge.
Today Aveda Institute provided the makeovers.
Unfortunately, when I went out to the lobby to see if they were set up yet I was informed that the photographer was ill. I had to laugh. No surprise there. Simply the way the entire week seemed to be going for this family!
I was stopped by a nice gentleman from Aveda Institute , however, who informed me that they were still hanging around even if photographs were not being taken to do hair, make up and hand massages.
The boy was reluctant stating, " I am not wearing makeup!'
I assured him he did not have to wear makeup but it might be kind of nice to get a hand massage and a hair style. I may have also casually mentioned how pretty the cosmetologists were.
The Boy checked his hair frequently through out the day and asked later if I would buy him some hair gel. He made me smile.
I am grateful for organizations such as Aveda Institute who give back to their local community and who go out of their way to provide happiness to those whose lives really benefit from a self-confidence booster shot.
Job well done, Aveda. This mom thanks you!
Feb 11, 2012
The Boy To The Rescue
The boy's initiate the evening by running wildly through the auditorium chasing other boys. Then the girls run wildly through the auditorium chasing the boys. Then the boys muster the courage to chase the girls. And then the girls pretend they are not enjoying being chased by the boys.
There are always a few girls and boys who actually dance. The girls twirl in their prettiest party dresses. The Boy's gyrate in their Sunday best.
The Teenager, who has recently been invited, eats sweets when she thinks I am not looking.
The Baby is generally wheeled around by a nice young man in The Boy's class who has taken her under his wing. This year I put the Baby in the wheel chair stroller which is not as tippy as her one-armed drive wheel chair since we learned at previous events that, like all "young men," the wheeling around frequently involves high speed chases and wheelies.
I spend the evening shrieking at The Boy to..."STOP RUNNING OR YOU WILL SIT THIS ONE OUT!"
Because all I can think of is that blasted intramedullary rod in one of his femurs that is telescoping out of postilion and I don't want to ever see him suffer like he did during the 2008 bent-rod-femur-fracture-2 surgeries-in-2-weeks-significant-blood loss-non-union-bone stimulator-for- one -year- fiasco. Ever again.
Our orthopedic appointment is April 9th to schedule the elective surgery to replace the rod.
The phrase "elective surgery" in our family is an oxymoron. So I continue to shriek at school dances.
One year I actually left him in the care of a number of parents at the dance who assured me they would watch him. When I returned to pick him up he was clad in a white sleeveless undershirt. I asked what happened to his Sunday dress shirt and neck tie and one of the parents replied, "Oh we though that's what he wore to the dance."
I've never dropped him off again. Thank God the undershirt wasn't one of those holy, stained rags we keep for "layering" during the winter months.
Last night the dance was going as predicted above. The Teenager was somewhere in the kitchen cruising for cupcakes. The Baby was doing wheelies and peeling out with her dance partner. I was stealing Sweet Tart lollipops from unsuspecting children.
Dang those things are good!
And then the Boy comes running (yes of course) to me yelling...
"EMERGENCY! EMERGENCY! MOM COME QUICK! WE NEED YOU! EMERGENCY!"
Of course I thought it was one of his usual emergencies. You know The faucet is leaking... A snake has a baby bird in it's mouth...so i waved him off. And then I realized I wasn't responsible for the school plumbing and there were no snakes or birds nests in the auditorium.
The Boy leads me to the boys bathroom where Attilla is out cold flat on his back. His mom is kneeling at his side on her cell phone calling 911. Seems The Boy knew to grab her first. I was so impressed!
"Mom! Atilla's mom almost ran faster than me!" he was amazed by her sprinting ability.
I wasn't surprised. I explained to The Boy that mom's displayed super powers like that when their "baby's" were hurt even if their "baby' was built like John Cena.
I didn't do much. The nurse in me checked his respiration's while preparing my self mentally to do CPR if necessary and praying it would not be necessary. His pulse was steady. His pupils were equal. There was no blood so I began searching his skull for dents (hate those) or lumps ( a little better). I made mom feel his head where i thought I felt something that shouldn't have been there. Atilla had brain surgery this year so I wasn't sure if the lump should have been there or not. When I moved mom's hand over the suspicious area her eyes grew large.
"That's not supposed to be there."
I instructed The Boy to go and get ice while we waited for the paramedics. Mom continued to talk to the 911 dispatcher asking what was taking them so long while I assessed and stressed silently. Is he not responding well because he's postictal or is he not responding because he has sustained a significant head injury? I hate the not knowing part. I wished I had a CT scanner in my purse.
During all of this The Boy refused to leave Attila and i didn't have the strength to continue arguing with him.
Finally Attila began to respond a little. He knew The Boy was there and said his name twice. He reached for moms hand on and off.
In retrospect it's always hard to tell what came first. The chicken or the egg on the head? Atilla's episode was reminiscent of The Teenagers first seizure where she fell backwards striking her head on an antique steamer trunk. Did she fall first and then begin to seize? Did she seize first and then fall?
In response to the questions, The Boy graced Mrs Needs-To-Be Canonized and myself with a dramatic recreation of the incident. He staggered around, bounced off a couple of walls, and then crashing his head against the wall, slowly slid to the ground where he lay twitching.
Mrs. Needs-To-Be Canonized and I just looked at each other. I thought I saw a faint, circular glow forming around her head.
As I'm typing this my phone rang with news that Attila is ok. He probably had a seizure due to the onset of puberty and those stinkin' hormones. His head is fine with no skull fracture or concussion.
I hate puberty. But that's a discussion for another time. Right now I am content with the knowledge that Attila is ok and proud to bursting of my boy.
Feb 10, 2012
We Could Discuss This Subject At Length But A Picture Is Worth A Thousand Words
During our January visit to the Big City behavioral specialist said doctor decided to wean The Boy off of one of his two medications for hyperactivity. I was a little surprised and pondered out loud why he wanted to mess with success?
"I'd rather have him on one medication than 2."
Wouldn't we all.
I dislike medication of any kind but have learned to recognize over the years that for some children and adults it is just plain necessary whether it be for hypertension or hyperactivity. I also recognize that some people still think love and nurturing are enough when it comes to dealing with behavioral issues while others see every twitch or fart as needing psychiatric medication to deal with said twitches and farts.
Both types of people drive me completely insane. There is, after all, a balance.
A balance that I hope to have achieved during my experiences with multitudes of foster children and my own three who were adopted through the foster care system arriving with extensive illicit drug exposure in utero, no pre-natal care, traumatic birth histories, family pre-dispositions to mental illness and learning disorders......blah...blah...blah.
I will admit, however, that I STILL lean towards NOT medicating. Which is why I let the Big City behavioral specialist talk me in to messing with success.
Immediately I noticed a difference. The normally talkative child could not and would not shut up.
"How big is God?"
"Does Jesus have brothers and sisters?"
"Have you ever eaten ants?"
On and on and on. No, not terrible behavior. Annoying. Super annoying. Off the scale on the annoyance meter annoying.
And then the outside complaints began to trickle in. When I came home from work on Tuesday evening my sitter, Curly T, greeted me at the door with...and I quote...
"What in the hell is with The Boy?"
Yesterday, Mrs. Needs-To-Be-Canonized mentioned The Boy's escalating impulsivity during the past two weeks while giving me that all knowing, all wise Mrs. Needs-To-Be-Canonized look.
I called the Big City doctors office from the car before we even screeched out of the school parking lot and reported the behaviors to the nurse.
After we arrived home The Boy presented me with a note from his teacher, Mrs. Zookeeper, regarding his not being able to stay in his seat and concerns regarding escalating impulsivity.
Please sign note.
This is the first EVER note home in 3 years.
"Is it bad? Is it bad? Is it bad?" he asks while boinging through the house.
"No, honey. It's not bad at all."
OMG. It's bad. It's bad. It's bad.....
On a brighter note now perhaps they understand more fully what life is like at home as The Boy has historically only been able to "behave in one arena" to quote the Big City behavior specialist and honey home was NOT that arena. At school he is the little "angel."
Or rather was the little "angel."
I called the behavior specialists office back and told the nurse to add "teacher" to the list of concerned citizens.
We wait for our answer on Monday. It's going to be a long weekend.
In the meantime I reminisced back to the days before medication when The Boy was unable to sit still. At the age of 8 years all drawings looked like this one:
At the age of 8 years after one week on medication all drawings looked like these:
Like I said. A picture is worth a thousand words.
Feb 9, 2012
February In Florida
Feb 5, 2012
Yes! It's Monster Jam Time, Again!
FYI: It is never a good idea to rankle The Genius. Ticket Master was especially nasty and non-accommodating regarding seats for two children in wheel chairs. We ended up with the best seats in 5 years of Monster Jam attendance when The Genius went directly to the stadium supervisor. Yes, we did.
This was The Baby's first year at Monster Jam. She seemed to be especially fond of Gravedigger.
And then there is The Teenager who becomes so over stimulated the first 15 minutes we are there we embark on a 6 hour emotional roller coaster ride. One minute she is sobbing because she can't have popcorn with her $8.25 hotdog and the next minute she is doing "the wave." Go figure.
I call the above photo two gorgeous grills. She really liked this truck.
The Artist came for the evening from north Florida.
She takes her Monster Jam's seriously.
And then there are the boy's...
Boys love trucks.
Posing with Maximum Destruction
Clothed in the finest cammo.
(OMG. I just noticed myself in the bumper. No my rear-end is NOT that huge...)
More interested in the food than "the wave."
And seriously? The Artists' boyfriend fits in with this family like okra in stewed tomatoes. No further explanation necessary.
We partied in the pits before the stadium opened under blue skies and warm breezes.
I think I like Monster Jam much better when it's not pouring rain and 40 degrees. We didn't even need a sweater!
Thanks global warming!
Thanks The Genius for the pit passes!
The monster trucks never disappoint! We always have a fabulous time whoopin' and hollerin' when they tip, flip, and soar through the air.
Can't wait for Monster Jam 2013! Bring it on!
Feb 3, 2012
"I Told My Dentist My Teeth Were Turning Yellow. He Told Me To Wear A Brown Tie." Rodney Dangerfiled
Ok. So here is your choice. You roll with that answer or you don't roll with it and if you don't roll with it then you are clearly inviting things like murderous thoughts, hypertension, headaches, nervous tics, and screw top gallon jugs of $4.99 wine into your life.
Looking back over the days since I blogged last on January 22, 2012 it is clear that I haven't blogged since January 22, 2012 because of the complexities of a life with many children. Both mine and the children of my clients.
On the home front, The Teenager has been going to the same pediatric dentist for 15 years and has never missed a 6 month exam. That's 30 dental examinations for those of you who are counting. Unfortunately, during the first dental exam at the age of three they accidentally choked my orally defensive CP child with the water squirter.
She has NEVER forgotten this and has never behaved well since that first visit. I will say she has improved a little over the years. During the last exam and cleaning it only took 3 adults to hold her down. I believe she holds the office record for 6 adults.
Since the age of three, The Teenager has had a special disdain for this pediatric dentist compared to the orthodontist, pediatrician, ophthalmologist, orthopedic physician, and neurologist.
Which is why...I suppose...in 15 years the pediatric dentist has never shot one x-ray. Which brings me to the 3rd molar eruption aka the wisdom tooth fiasco. Somehow those wisdom teeth began growing sideways beneath the gums and the next thing I know we are off to the University of Florida dental school to see about getting them out ASAP. Sans panoramic films or any kind of radio-graphic proof.
Not always...and I say again...not always...but more often than not....it is all about HOW you approach special needs children. The tiny Asian lady at the UF dental school had that magic fairy dust clinging to her lab coat when she warmly shuffled the teenager off and with no issues whatsoever took dental x-rays while I hid. Lots of x-rays. The Teenager came in to the exam room afterwards all smiles with a sheriff's badge affixed to her blouse.
Wow. What just happened, Tinkerbell?
We then saw the cute, little "mini-dentist" who looked to be around 15 years old. I spelled words for her that she was not familiar with like Lamictal and Timolol and then she reviewed the x-rays laying out the three options for extractions poo-pooing the admission to the children's hospital because "you really want to avoid general anesthesia."
Avoid general anesthesia with The Teenager? Oh. Ho. Ho. Ho.
I will add an important tid-bit here for those of you who are unaware of the world of special needs children, many of whom have Medicaid. Children who have Medicaid are the property of teaching universities and medical/dental students in their area if you live in such an area. This is not always a bad thing if you live in an area like we do that has a pediatric hospital affiliated with John Hopkins and a state of the art dental clinic affiliated with the University of Florida and if you are a mother like me who does not hesitate to throw students out on their still powdered and diapered butts if they are idiots while demanding a real "ologist" or a face to face with Risk Management. Now.
If you live in podunk and have Medicaid, however, you may want to consider relocation.
The super nice, 15 year old "mini-dentist" informed me the "almost a dentist" who would be performing the oral surgery was currently in surgery so they sent the HEAD of the dental school in instead to meet The Teenager and review her films.
I will refer to him as "the actual dentist." I liked him instantly.
As a matter of fact I liked everyone at this clinic. It's not often the entire staff from receptionist to head of the department are this cheerful and humanoid. Call me jaded but after a while I was beginning to suspect a large scale Nitrous Oxide leak in the clinic.
The first thing "the actual dentist" did was warmly grasp The Teenagers hand in greeting. I couldn't help but observe he was also scanning for IV sites. Clever dentist.
I was correct. Call me brilliant.
"How is she with IV's?" He asked quietly.
"That depends on how good your technique is." I replied.
"No pressure there," he jovially responds.
Sniff. Sniff. Is Nitrous Oxide odorless? I began breathing deeply. Just in case.
After scanning Tinkerbell's films he announces the procedure would have to be done under general anesthesia in the children's hospital due to the proximately of the bottom 3rd molars to the inferior alveolar nerve. I could have bowed down and kissed his feet I was so relieved. Had the "almost a dentist" not been performing surgery and had they not sent in "the actual dentist" who had many, many years of wisdom and experience under his belt the outcome may have been very different.
William Cowper put it nicely:
God moves in a mysterious way. His wonders to perform...."
The Teenager was admitted to the local children's hospital a few weeks later. It did not go well.
When 'the actual dentist" came out of surgery around 7:30pm the first words out of his mouth were, "we had a little trouble."
I am quite familiar with the words, "we had a little trouble." With my three I've heard these words before.
"We had a little trouble with The Boy. He lost a lot of blood and we had to transfuse him."
"We had a little trouble with The Baby when we tried to wake her up from the adenoidectomy. She did not respond to the Narcan so we had to give her caffeine to facilitate breathing on her own. She won't be going home today as planned.
"We had a little trouble with The Teenager. In my 33 years as "the actual dentist" and hundreds of wisdom teeth extractions she was the top 5 worse cases I've ever done. We only managed to get 2 teeth out in 2 1/2 hours and in the process she lost a second molar which was fused to the wisdom tooth."
We had a little trouble.
The "almost a dentist" is sitting behind "the actual dentist" looking terrified. I'm thinking he may have started the procedure but clearly did not finish it before "the actual dentist" had to take over. Two and 1/2 hours is a long time on a tooth.
The next surgery is scheduled for March 23rd in hopes of removing the remaining wisdom teeth.
Today we went in for the post-op visit where we saw "almost a dentist." I have to say the man/boy is a living doll.
He was wonderful with the Teenager and even managed to flush her surgical wound with chlorohexasomethingorother. We do not have to return until our surgery in March.
"Will you be doing the next surgery?" I inquired.
"Unfortunately, I will not be here in March so you will have Dr. Brady. She will be in the operating room with 'the actual dentist" and you will really like her. She is my dentist!" This man/boy is so stinking sweet and adorable I wanted to squeeze him.
Which is exactly why I almost bit my tongue in half when he mentioned Dr. Brady rather than spit out the words dancing on the tip of it.
"Dr Brady! How lovely! Would that be Jan or Marsha?"
You may be reading this thinking I am prone to exaggeration. No way.
As we were leaving I stopped to remind the lady who schedules the hospital admissions that "the actual dentist" informed me after surgery that next time he wanted to schedule The Teenager as the first case in the morning and not the last case of the day.
She smiles sweetly at me and responds, "she will be the only case on that day."
Proof enough? I believe so.