The Samantha Years

Paralympics

Impossible is Just Another Word- Jim Furlong

Alexi Salamone was born with deformed legs as a result of the Chernobyl nuclear disaster. He was adopted, grew up in the States and is now on the US Sled Hockey Team.

Heath Calhoun lost his legs in Iraq. He is on the U.S ski team and was the flag bearer for the opening ceremonies.

A couple years ago, a teenager was struck by car a couple miles from our house. Nikko Landerros lost his legs in the accident. He is now on the sled hockey team.

Caitie Sarubbi is a freshman at Harvard and ski races full time. She also has a rare genetic syndrome that only 13 other people in the world have. She’s had over 56 surgeries and is visually impaired.

Samantha’s mother is sitting on the couch eating Reese’s peanut butter eggs, with Kleenex in hand. She in complete awe of the human spirit.

Have you ever skied with your eyes closed? I can’t ski with my eyes closed. During an instructor training, a friend of mine tried to demonstrate skiing with their eyes closed, he ended up in a net on the side of the hill….a big skiing tuna.

I have also never skied without my arms, or my legs. I’ve tried to ski on one leg but I don’t do it very well.

And I just can’t skate…..

At one point in time these people may have thought their life was over….their legs were gone, their spine was severed….the person they were had been altered.

At look at them now…..






A shout out to Samantha’s Pops and Nonnie who are at the Paralympics. Pops is treasurer for a non-profit called No Excuses. No Excuses supports disabled skiers; helping them with training, development and funding. Thanks Pops!

I have a dream that someday Samantha will join us on the slopes.

Impossible is just another word.

The Samantha Years

And now we must beat her…..

After a lovely birthday lunch with Aunt T, we went to see Dr. E about Samantha’s junky lungs.

They have been ‘junky‘ for two months. For most it’s not a big deal, just a winter cold. But Samantha doesn’t have the strength to cough up what lands in her lungs.

And that could lead to pneumonia. We don’t like pneumonia.

Dr. E was concerned that the lower lobes of her lungs sound a bit ‘crackly’. So she ordered rubber cups for her chest. The new protocol is that we lightly beat her chest with the rubber cups for ten minutes twice a day….this breaks up the goo that settles in her lower lungs. The rubber-cup-chest-beating is followed by suctioning.

“I hate suctioning.” I told our respiratory therapist.

“Yeah, I’ve been doing this for 20 years and I still don’t like to suction kiddos,” he said.

I told him this bit of information didn’t make me feel any better.

Dr. E and I met Maria for a coffee after our appointment. It’s crazy and so comforting to have such a group at TCH.

Tonight we beat Samantha’s chest for ten minutes. I tired to come up with some sort of rhythmic song to sing but I got nothin‘. She actually liked the chest pounding….I think it kind of tickled….the suctioning? Not so much.

Still no seizures since the fat increase….crazy.

Happy Weekend!

The Samantha Years

4 Grams

Samantha is on a crazy high-fat diet to control her seizures; the ketogenic diet. I have heard amazing stories of recovery on this diet. I’m a fan but I’ve always been a little skeptical when it comes to Samantha.

– She’s still on seizure meds.

– We do see seizures every once in a while

– It’s very hard on her body

Samantha is tube fed so we control her diet and what she eats. The ketogenic regiment requires that we measure the ingredients of her diet to the gram. She gets 126 grams of hard boiled egg. 56 grams of juice. 71 grams of olive oil. We even measure the carbs in her vitamins.

I’ve often thought what would happen if we deviated….just a little bit. I’ll read posts about a kiddo who ate cookie crumbs his sister left after a snack and then had a seizure because he went over his carb count.

Really? I would think, cookie crumbs?

Two weeks ago Samantha went in for blood work. The tests couldn’t be completed because her blood had hemolized. Her doctor was also concerned because her blood was lipemic…meaning their was too much fat in her blood to get an accurate reading.

So, all things considered, we reduced the amount of fat she was getting her diet. Bear in mind, the seizure control is based on the fat. But the reduction wasn’t huge, when everything was calculated, we took 10 grams of olive oil out of her daily intake.

Two days later, Samantha had cluster seizures. Five days later, Samantha had even more seizures. On Tuesday, we had to use Valium to control her clusters. She had seizures throughout the day yesterday and we had to use Valium again.

We clearly lost the seizure control we had.

We retested her yesterday and got a good reading on her blood work. The nurse called this morning to tell me her lipid count was still high but could increase her diet to the ratio it was before.

I’ve never been so happy to give my daughter a stick of butter.

Well, okay, it really wasn’t a stick of butter but I did put 4 grams of olive oil in her formula this morning to bring the ratio back up….that’s right four grams. We’ll put the missing six in her lunch and dinner to bring her back up to the ten we took out last week.

I haven’t seen a seizure yet (knock on wood)….usually by this time we’ve seen four or five.

Four grams of olive oil….

Maybe there is something to this diet.

The Samantha Years

Our Blog Partner!

I’ve read articles on how to advertise on your blog, how to get corporate sponsors to send you cool Mama and baby things. How to write reviews and post them to your blog for your dear readers. Hopefully, you’re persuasive enough that everyone runs out to buy Little Baby Boo-Boo’s Bodacious Butt Cream.

I’ve thought about this but my readers are precious gems. Oh yes you are….if you take time to read my weekly rantings, the last thing I want to do is waste that time to try and sell you Stan’s Stinky Sock Spray.

But when this organization contacted me, I was intrigued. It’s a good organization. It’s a humanitarian organization and I am quite honored to partner with them.

Perhaps you’ve heard of them…..

It’s the American Red Cross.

Which is pretty darn cool.

The Mile High Chapter will be posting a link on Samsmom. If you click on that link and use the code word BLOGGER, you will receive a 15% discount on Child/Infant CPR.

Personally, I can rally behind Child/Infant CPR….much more than Stan’s Stinky Sock Spray.

When Samantha has seizures, she stops breathing. Lil’ Miss can hold her breath for an extraordinary long time when she’s in the middle of a seizure. The first time this happened, it was 2:00 in the morning. I kept thinking of the CPR steps….tap and shout…911…ABC’s... I THEN realized that I hadn’t taken a CPR class in forever and I couldn’t remember the compression rate for an infant.

CRAP!

Fortunately, I never had to use the compression rate but I DID sign up for a CPR class after that. Samantha’s condition throws us many unexpected, unplanned, curve balls but I left that class feeling like I carried an ounce of prevention in the topsy-turvey world of being her mother.

So please welcome our lovely partner….The Red Cross, who has bravely decided to join on this ride. We are very honored.

The Samantha Years

Deflated

Sunday mornings at home include coffee, breakfast, the Sunday paper and Meet the Press…..tradition…

Today’s broadcast left me a little fired up; healthcare reform, fighting within congress, back-stabbing, shootings in Washington over political agendas.

It left me really fired up. Cleaning the bathroom fired up, writing a political blog post fired up. What has become of our country? Who are we if we can’t agree on anything? Why does everyone seem so angry?

The more I thought about this, the seemingly hopeless division in our country, the more my balloon of anger and despair grew. It started to fill the room.

And then I read my friend Maria’s post about Jacob’s school fundraiser. Maria gave a speech at the Bal Swan Ball regarding their journey with Jacob. She received a standing ovation and people gave thousands of dollars to the school after hearing their story.

Well that doesn’t fuel my balloon of anger and despair at all.

And then I took Samantha to a free art class, sponsored by a local therapist. Samantha painted with a therapeutic handle for over an hour. I was very, very proud of my little Monet! And very grateful to a woman who would donate her time and expertise to our special needs community.

My balloon of anger and despair started to deflate.

The grand finale was an article in paper about volunteering….that more Americans are giving back and helping their community during this time of need.

Well crap…..I am no longer angry. I no longer feel hopeless and full of despair.

My husband and I honeymooned in France. This was during the time when France pulled out of Iraq, we were eating freedom fries instead of french fries and friends wondered why we would choose to vacation in such a place.

One night we had dinner next to a French couple and we talked politics. “What is important”, the woman next to us said, “is that we are not the French government. You are are not the American government. We are only people, having dinner and enjoying each others’ company.”

So we shared a bottle of wine. Viva La France!

But it’s true, during this time of uncertainty, we cannot forget that we do not represent what is going on in Washington. We are only people, generous, intelligent people who only want what is best for our families, what is best for our lives.

My balloon of anger and despair is nothing but a tiny piece of latex.

So, instead of being angry, perhaps I will sit back tonight with a glass of French wine and just watch the Academy Awards. This is a tad ironic because I’ve only seen two of the ten Best Pictures; Up and Inglorious Basterds.

We are the only couple in the world who has not seen Avatar.

My vote? I loved Inglourious Basterds; violence and all. I think Quentin Tarantino is a crazy genius. Personally, shockingly, my vote is for anything but James Cameron. It’s wonderful to be fabulous at what you do, even better to have other people think you’re fabulous….but to tell the world how fabulous you really are, well that’s just poor form….I had to give my opinion about something 🙂

Happy Sunday.