Monday, March 24, 2014

spina bifida, deafness, club foot, hydrocephalus.....

WOW....now that's a list of issues. 
Wanna "meet" her??
Yep, my daughter has all these issues.

This photo is shortly after Miss "B" came home to us in June 2009 from China.   She had NO language and could not walk.  You can see her right foot was at a constant point due to club foot. The scar that ran across her lower back was complicated looking and very ugly.  Her hydrocephalus was untreated. We had our work cut out for us to visit doctors and to have her hearing assessed. 

I was going through my old file of emails for her adoption and came across a few emails written when as I was being called to advocate for her (and subsequently become her mommy).  I am still in awe of how God raised up a village to bring her home.  Within two days of an email post to the group for my agency THEY had raised enough money to begin the process for her - over $3,000.00!  It was God bringing angels to help our family commit to this little sprite.  The testimony of her adoption is one for another blog post - so, I digress...

Brighton's file was empty.  It had three photos of her and a few medical reports.  Nothing to state if she was hard of hearing or profoundly deaf.  We knew she had been given the surgery to correct her meningocele and her back was closed.  That's about all.   Her head didn't look overly large like some kids with hydrocephalus but we new there had been no treatment.  We didn't even know if she could bear weight on her legs....all the photos were of her sitting down.

Wheels were turning.  It was before our adoption of Joseph that I started looking for her family for her.  I was advocating the best I could but she needed help.  I knew that an update for her file was needed to help prospective parents see her for who she really had the potential to be.  We got one through my service for families that are waiting parents.  (www.ladybugsnlove.com)

She was pictured standing next to a bed in a garage type room with dirt floors.  She was filthy but her smile was there "beaming" for all to see.... She had personality plus and we could all see that from her photos.  The report said she was incontinent and could not walk without assistance.  Her foot was badly clubbed.   She could not hear.

Hmphh - all that.  Yep, it was a whole bunch of stuff that a family would have to consider.  They'd have to have good insurance and time.  Time to go to doctors appointments and therapies.  It was going to be harder to find a family than I thought....even with the update that she could stand.

About a month later Joey came home - He was very very ill with a severe heart defect.  I never once considered adopting Brighton --  especially so, with a critically ill child to care for.   Joseph was extremely blessed to have a team of doctors fight for his life when we came home.  He was miraculously discharged 9 days after his open heart surgery.  His life was spared and he was on the road to recovery.

About a month later, I started to feel the call to go get Brighton. We prayed and finally decided to move forward.  We were only home with Joey for four months so we could not start our homestudy for two more months. (That was our agencies rule, I think)  We waited over a year to go get her and in that time, I actually traveled to her home town and delivered a walker to her.  (another miracle)

Brighton came home to our family in June of 2009.  She could not talk but she could make noises and made her needs known.  She had a foot that was completely upside down with a callous on the top of her foot from "walking" on it.  We had doctors lined up and clinic appointments for her spina bifida.

Her final assessment was that she was incontinent, profoundly deaf, had a club foot, dislocated hip, repaired meningocele, and unshunted hydrocephalus but in the first few weeks we spent with her we knew no matter what the list included she was our daughter and she was such a happy girl.  God knew what He was doing and we are so blessed to call her our own.

This photo was taken after her club foot casting.
She is wearing ankle foot orthotics to give her stability.

Today, Brighton is almost nine years old.  She is in a special needs 2nd grade class at our local deaf school.  She is thriving and she is still the happiest kid on Earth every day.  We use American Sign Language to communicate and she is learning more and more every day.  Since she has joined our family she had had many surgeries including being shunted and having her spinal cord de-tethered. She is incontinent and is catheterized four times a day to keep her kidneys healthy.
She had club foot casting done as well.   Brighton now walks with forearm crutches and uses a wheelchair for long distances.  She is a smart young lady with a stong will to do things other people don't expect her to do.  I can learn so much from her determination.
 
Brighton has taught me many things.  Most of all, she has taught me to know that God knows what we can handle.  He planned everything perfectly and always does.  So glad I listened and chose His path!  I would have missed such a blessing!!

1 Corinthians 9:26-27 (The Message)
I don’t know about you, but I’m running hard for the finish line. I’m giving it everything I’ve got. No sloppy living for me! I’m staying alert and in top condition. I’m not going to get caught napping, telling everyone else all about it and then missing out myself. 

**tomorrow's blog will be about the living conditions Brighton had while in China with her foster family.  It was a mountain dwelling with no heat.