what’s josie up to?

Josie has started physical therapy here.  She loves Monica.  I love that Monica trained with a specialist in bone lengthening, who saw many paitients with dwarfism.  She came all the way from Florida.  I think she was sent for a purpose.

God is great.  He seems to be providing Josie the care she needs even though we’re in a rural area.  As a mother, I couldn’t be more excited.

the Josie part of California

The main reason we headed to California exactly when we did was to attend the Little People of America (LPA) 2011 National Convention.  We didn’t go for the workshops or the gatherings (mostly because we wanted to spend as much time as possible with family).  We went because of the medical clinics they offer for no extra charge.  I am so overwhelmed with gratitude to all the doctors who volunteer their time to see patients who truly need expert advice.

Our main concern with Josie is her spine.  Particularly her c1 and c2.  In people with Metatropic Dysplasia this is an area that is watched closely.  There is potential for severe spine damage and possible death if these two vertebrates are unstable. They can slip and compress the spinal cord.  It’s pretty scary to think of.  Our pediatrician here has had only one little person under his care in over 30 years of practice…Josie.  An expert opinion of if, when, and how to fuse the spine is so greatly needed.  Again, so thankful for these professionals that deal with various dwarfism daily to have a look at Josie.

So, off to the convention we went.  It was just Nick, Josie, and I.  The rest of the clan got to spend some time with the family.  Walking into the hotel was surreal.  Everywhere we looked we saw little people laughing, talking, pulling suitcases ect.  Sometimes I think Josie isn’t really a little person.  I mean, she’s only 2.5 so it’s easy to forget that she’s already more than half as tall as she’ll ever be.  It’s easy to forget.  This made it pretty clear.  She’s going to be super small forever.  Personally height is no issue.  I couldn’t care less about what she looks like.  She’s my baby girl and I love her dearly.  I see all tat she is, not just how she looks.  Others.  Others are the ones that care.

As we were standing in line to check in, I felt like a giant.  I’m 5’3″ so this doesn’t happen often, if ever.  Josie has crooked feet that turn inward, so as I stood in line I observed what types of shoes everyone was wearing.  That wasn’t helpful.  Flip-flops, tennis shoes, skater shoes, even high heels.  I always have a hard time finding shoe that are comfy for Josie so I was hoping for an answer.  I noticed that most everyone wore regular yet tailored clothes.  Guess I’ll me bound to my sewing machine whether I have time or not :)  There were also many wheelchairs and scooters.  Josie looked around too.  She saw a little man hustling for the elevator and said, “Haha,” in her goofy little chuckle, “He’s little like me mom!”

She doesn’t know she a little person yet.  She just got a kick out of how small the adults were.  To a two-year-old I guess it would be fun.

After check in we headed back to our family stopping to take some pictures outside.

A couple of days later we went to see the doctors for our appointments.  Dr. Krokaw is a genetics and OB doctor for little people.  She was so helpful.  We now know to have Josie’s eyes and ears checked yearly.  Also, she suggested we do a sleep study to rule out Central Sleep Apnea.  This disorder is present when there is damage to the spinal cord.  I would have never thought that her serious snoring would have anything to do with her vertebrae.  Like I said…expert advice is so very important.

We then took her X-Ray disc down the hall to Dr. Mackenzie for Dupont Children’s Hospital in Delaware.  He is a pediatric orthopedic surgeon who specializes in skeletal dysplasias (dwarfism).  After doing a full body exam, and reviewing her images, he saw no need to rush off to surgery with her.  Over all he said that her case is quite mild and she is doing great.  Her spine looks fairly straight considering, and there appears to be no damage to the spinal cord.  He did mention that he would like the X-Rays done over since they were poor images (thanks Copper Queen Hospital), just to be sure.  What a relief!  From now on we can simply email or mail the images instead of paying the money to go see him every year.  Yipee!

We are so relived and excited to have doctors that are passionate and proactive about Josie’s health.  They are a wonderful group of doctors that are very caring and sympathetic to out little Josie.  Ahh, now we can breathe.  No more worries for now.

josie, my dear little one

Today I was going to post about what I’ve been cooking or baking, or share a garden update, but all that seems to not matter as much now.  Miss Josie’s X-Ray report came in today.  It said words like Platyspondylydeossification, and the dreaded hypoplastic ondontoid.  I was going to calmly tell Nick the news, but as I told him I broke apart.  I was going to really lose it, but his prayers and words calmed my heart.

It’s ironic really.  Just last week I was thinking to myself about the cycle of following Jesus.  At first it’s a high.  An enthusiastic energy that can not be stopped.  A consuming fire.  As years pass and everyday reality sets in there seems to  be times of trials in which we grow closer to God, followed by peaceful rivers of contentment.  I was thinking how peaceful and easy life seemed just then.  I knew immediately a storm was coming.  I never know what they are, but it never fails that this thought come to mind.  God whispers “I’ll be there, don’t worry”.  That’s when I know it will be a big storm.

I know trials mold be and shape me into the women that God would have me be.  I truly welcome them.  I’m confident that my God knows all.  He knows what’s best for me…for us.  I trust Him.  I love Him.  I thank Him through teary eyes and fearful heart that all will be well.  No matter what, He will never leave me.  An ever-present help in times of trouble.

I don’t blindly go where He goes.  I know exactly where we’re going.  I don’t know what it looks like, but I am certain it’s a place where He is my Lord, and I am his servant.  It’s a place that cannot be imagined, yet I can already see that I’ll love Him more.  I’m going with Jesus through some suffering that leads to joy.  He’s taking me on a path unknown to a place I’ve been before…surrender.  I love where we’re going, but I don’t want to ride the train.

Will there be surgery?  How will we pay for it (blasted insurance company!), will she be scared, will I be?  When?  Where?  Goodness!  The bombardment flows through my head. Pray Jennee.  You are a fool to wrestle with the invisible.  You cannot control it.  Maybe it won’t be so bad.  People are around you to love.  Love them.  Love the doctors, love the nurses, love the other parents going though even worse.  They are the mission field.  Be thankful.  Thankful for her.  Thankful for professionals, thankful for everything.  Everything?  Yes.

As our family takes this journey with Jesus, I ask for your faithful prayers.  I know that miracles are only from God.  I ask Him for them now.  Will you join me?  From a mother’s heart to yours, I pour myself to you, my faithful readers.  Some of you are dear friends, some of you are dear strangers.  Knowing you’re there is so very comforting.  Knowing He is there is so calming.  Jesus let your name be glorified.  “To whom shall we go?  You alone have the words of eternal life” ~John 6:68