Monday, September 28, 2009

Sami's birthday tea party

Here's a few pics from Sami's tea party. She had a wonderful birthday party! We invited a few girls to dress up ("a real formal party Mommy") and bring their baby dolls. Since Sami is so tiny, we just had everyone sit on the floor. "Tea" was flavored water, plus cheese, crackers, breads, fruit and veggies. I used cookie cutters for the cheese and breads...huge hit!

Thursday, September 24, 2009

Sami's birthday


Well, today is Samantha’s 6th birthday and we just finished a birthday breakfast at Panera. When I think back to the beginning of her life I’m amazed at how far she has come. This is our story….

At my 20 week sonogram appointment, the doctor told us that the little girl inside me had very short and bowed limbs. His face, though, told me more – sorrow and regret. Something was very wrong. We were quickly referred to the specialists at St. Luke’s. (In case you’re wondering, an adult cannot deliver a baby at Children’s Mercy, even if the child will need their care right away after birth. Don’t ask me why. I assume because, technically, I’d be a patient too but not under 18.)

At St. Luke’s we had many tests run, an amniocentesis (which does NOT feel like a bee sting!), and high-tech ultrasounds up the wazoo. All to find out that Sami was either going to have Campomelic Dysplasia or Osteogenesis Imperfecta type II. Each time I went in there were more and more breaks of her bowed little bones. With either disease, the doctors told us (7 months into the pregnancy) to make her funeral plans as she wouldn’t live past 24 hours.

Luckily, we have a good friend who is a director of a funeral home. He came over to our house and gently guided us through the process and paperwork. That night was agonizing…feeling Sami kick inside of me while I sat at the dining room table talking over details and procedures. Finally, when the meeting was done, I went upstairs, lay in my son’s bed, and cried while holding him. He was having such a rough time at school and I thought that my sadness and anxiety over Sami must be affecting him. We would find out later that he has Aspergers Syndrome, a high functioning autism, on top of everything else.

As the day of delivery loomed closer, I began to dread it. Sami was safe in my belly, though broken, and I felt as if I was putting her to her death sentence at delivery. How could I do that? It ate at me night and day. I also questioned whether to finish the nursery or not. If we finished it and she died, I’d have to walk by it every day. If we didn’t finish it, it seemed as if we were giving up on her.

The morning of September 24th, nursery completed, Samantha came out wailing, “I’m here, deal with me”. Though I had a major c-section to get her out safely, she was still broken in many spots and healing other fractures all over her little body. We stayed at St. Luke’s for 4 days until a room opened up at Children’s Mercy. Once there it was confirmed that she had OI type III, the most severe a person can live with, instead of the lethal type II.

A new protocol came out of Canada’s Shriner’s Hospital to give children with OI a drug called Pamidronate. What that medicine does is slows the body’s natural tendency to rid itself of bad/old cells. Osteoclasts are in your body eating away at those bad/old bone cells so new, healthy bone can grow. OI is a genetic disease of collagen. Sami doesn’t have enough collagen and what she does have is so poor quality it’s not helpful. But, it’s all she has, so we don’t want the osteoclasts taking it away. The Pamidronate is given through an IV that takes about 4 hours each day, 2 days in a row, to administer. When Sami was an infant, she received treatment every 6 weeks, but now we are down to 16 week increments. Between breaks, appointments, and drug treatments our car could drive itself to the hospital for the first few years.

We also had adjustable rods put in her arms and legs. The first few surgeries didn’t go so well (pins poking out of elbows, YUK!), but now they are great. We found an OI Clinic in Omaha, NE with a fabulous ortho-surgeon that fixed Sami right up…..okay; as good as she can be fixed. The telescoping rods don’t prevent breaking, but do give her bones stability from the inside. Those rods will probably need to be changed out next year.

We still worry about common things like colds – coughing can crack ribs that could puncture lungs, falls, hearing loss – those little bones in your ears can break too, and a million other things for her safety. To be honest, it’s normal for us so we don’t give it much thought until asked about it, or read ‘Handle With Care’ by Jodi Picoult….tough read for me.

Starting Kindergarten brought a lot of Sami’s needed adaptations to the forefront. We built our house for her, but the school had to adapt and it was a challenge to think of all the details throughout her day in school. Kudos to her elementary staff and teachers!!! They bravely walked up to the plate and are doing wonderful.

Samantha is a feisty girl, with sass bigger than her dwarf 3ft frame, a quick mind, and spirit that is contagious. There are many times when we are supposed to be disclipling her and have to leave the room to laugh first. Her determination lets her bear crawl all over the place, take steps with her walker or around furniture and bring out her fashionista by changing clothes five times a day.

Sami is also sensitive. She hates being a dwarf and asks when she will be big like the other girls. Really, the dwarf part can be worked around (except at amusement parks – too short for the kiddie rides) but the brittle bones are what prevents her from doing most activities. It breaks my heart to have to teach her about discrimination from other people so early and hold her while she cries because someone made fun of her. The next OI conference is Aug 2010 in Portland, OR and will be interesting for Sami to connect with other kids who are just like her – not that there are many around the globe – but still she isn’t alone. WWW.OIF.ORG

Luckily, she has an older brother who dislikes her enough to pick on her for no apparent reason and parents who refuse to give in to all her whims…..unlike her grandparents  As much as we can, we are mean to our kids (according to them) and make them do chores like all other kids, eat healthy food, limit their TV and computer time, and have good manners. She has friends everywhere we go and was once used in a marketing campaign for the Children’s Hospital in Omaha with her own billboards and magazine ads!

Samantha has taught me so much in these 6 years. How to be humble, how to laugh, how to cry, how to ask for help, when to accept and when to fight, how to take care of myself, how to be a better parent, a better woman. Being a parent to kids with extra needs means patience and creativity, schedules and open minds, good karma and loving yourself….all taught the hard way. I can’t wait to see what they teach me over the next 50 years!!

Friday, September 18, 2009

Bones and Immune System Health

Check out this article on bones!!

Thursday, September 10, 2009


Even though I work full time all year, when the kids go to school I feel like starting over. I do my resolutions in Sept rather than Jan. This year I want to concentrate on my beauty, inside and out.

Did you know it’s estimated that French women spend one third of their salaries on beauty products and one third on lingerie? Can you imagine spending 2/3 of your salary just on yourself? What a luxury!

Well, I’ve decided that I’m going to make more conscious decisions about the time and money I spend on myself and my appearance. Whether I like it or not, appearance makes a huge difference in my feelings and in other’s perceptions. I’m not decking myself out every single day in formal wear – I work in a warehouse – but moisturizing at night, putting on jewelry, wearing nice panties are all things I can easily do.

Here are some items I’ve discovered that give maximum impact for little effort:
1.Dior’s Show Mascara – Sephora - $24 - Holy cow! My tiny pale lashes are huge with only one coat!
2.Tom’s of Maine toothpaste – $4 - I even buy the strawberry for my kids.
3.Mary Kay’s Eye Make Up Remover – really does take off everything gently, even waterproof mascara that others claim to take off but can’t.
4.Arbonne’s Eye Cream – The miracle of removing “freckles” and “laugh lines”
5.Mary Kay’s Microderm Abrasion set – makes my face smoother than a baby’s butt
6.Victoria Secret Beauty Rush Lip Gloss – 5 for $20 – the favors are fun and I like that I can feel my lips are covered in moisture. I favorite is Cherry Bomb because of the subtle shimmer. My daughter is addicted to the super glossy ones though 
7.OPI nail polish – $8 (but get last year’s colors for $4) so many colors and if you do the base, color, and top coats they’ll last for weeks. I love putting crazy colors on my toes.
8.Sally Hansen Insta-Grip for nails – instantly dries every layer!
9.Eddie Bauer T-shirts - $14 – You can get V neck or round; short, ¾, or long sleeves; in a rainbow of colors. These t-shirts look great with jeans, yoga pants, or slacks and keep their strong color through many washings. Dress them up or down, layer them, you just can’t go wrong.
10.Eddie Bauer No Iron button up shirts – $50 - tailored darts give you curves in the right places. Again short, ¾, or long sleeves. Look fabulous wash after wash.
11.Black slacks. Pants are hard to fit women because we are all different sizes so I can’t tell you a For Sure Hit brand that will work for you. You need to find a pair that hang properly straight from the hips so you have a long clean line all the way down to the floor. I like Express if I’m wearing loafers. But I have a dickens of a time finding ones long enough if I want to wear heels.
12.Coldwater Creek wraps - $40 (but they constantly have coupons) – right now they are two toned to get double the fun. These are so wonderful for throwing on in the spring and fall when the air can be chilled but you don’t want a bulky coat. I also love them for movie theatres which seem to always be set at Arctic Chill and my kids can snuggle up in them in the car.
13.Clarks shoes – I’m afraid these are a splurge, but the quality and comfort are amazing. Sandles, mary janes, flats, heels, boots, you name it they all feel good. They aren’t date-night-sexy but steady quality everyday shoes that help you look put together.
14.Silpada jewelry – Sterling silver from casual to sexy. Again, a splurge for quality. Most days I wear the Huggie earrings which are simple thick hoops right at my lobes.
15.French perfume. My favorite is Escada. I received a perfume lesson once that said French perfume makers use the real ingrediants, like rose petals, and not simulated stuff. So the fragrance is more pure and reacts better with your skin. A little bit will last you a long time.
16.Jergens Natural Glow body lotion – $7 - subtly and gradually gives you a warm tan
17.Burt Bee’s – just about everything from head to toe for me and the kids. Royal jelly is supposed to be a Superhero and I can say my skin is nice and firm.

Obviously I’m leaving out inner beauty here, but we’ll catch that one later.

What are some of your favorite things? Share with us and we can all be beautiful.

Wednesday, September 2, 2009

Help Me Find Peace

Help me find Peace

For the first time I’m asking for your help in my blog. After work today, we will pack up the kids and travel to Omaha, NE. Tomorrow Samantha will do a full round of body x-rays, bone density tests, hearing, teeth, PT, OT, ortho surgeon, the whole shebang. It’s her annual trip to the Children’s Hospital in Omaha for their OI Clinic (Osteogenesis Imperfecta – brittle bone disease) but this year we’ve been battling more pain in her little legs and therefore have more concerns to think about.

What we need is peace in our hearts and minds. The prospect of yet another set of surgeries for rodding isn’t too far off and weighs heavy on all of us. Of course Sami is scared. And my chest hurts seeing her in physical and emotional pain.

If you haven’t heard, rodding is the procedure of breaking the bones in various spots, straightening them out, and drilling holes into each section to place an expandable rod (like a telescope) in. The bones are supposed to grow around the rods, except Sami’s leg bones like to bow and are doing it even though the rods are in. This makes them less able to help the fractures that already occur because they aren’t as stable.

Type III OI is very rare, and really, Sami’s life is a miracle and an experiment. What is difficult is the unknown … will another surgery give her more stability for 4-5 years? Will the pain of the surgery outweigh the benefits? Is this her pain for the rest of her life? Is she better off in the wheelchair or crawling on the floor? Will the weight on her legs bring more lower back problems? I DON’T KNOW! And I can’t feel like we’re making the right decisions. I’m not naturally a gambler and the experts don’t have certain answers with her.

Please think about, pray, meditate, and send good vibes to us tomorrow while we are at the clinic. We need peace to make the best decisions for Sami and she needs faith that she’ll be alright.

Thank you !!!
Heather for more info on OI.