Big L's Occupational Therapy

Today we went to Touchstone which is where Landen gets his OT. Dana, who is his therapist, says that he is just "way too social". That's a good thing, right? Well it is, but not for therapy. Landen would much rather watch you talk to him and laugh at your funny voices than care what kind of toy or rattle you are shaking at him. He doesn't care that you have this REALLY cool toy that lights up and sings songs to him, he doesn't care if his bottle is right in front of him, because he's not going to reach for it. He however does like to watch people. If he's in the floor, he likes his head turned towards the door because he wants to see what's going on out there. He wants everyone to walk by and talk to him (in those silly baby voices) just so he can laugh at you.He would rather watch all the other children working really hard on his/her therapy and smile at them like they are suckers for not being "as social". He especially liked watching this little boy named George playing with his trucks. I can see the wheels turning in his head while he's watching them. I wonder if he's thinking "I wish I could do that, or will I ever be able to do that?" He will!!  

Hey...Look at that squirrel!

So, what did we accomplish today during the hour therapy session? Not much! The therapist learned a couple of things though... Dana learned NOT to bounce me on the big ball b/c that makes my tummy turn and I end up blowing chunks. She also learned that I'm too lazy to try to sit up by myself, so why is she trying so hard to get me to do it?

We have PT next week...I wonder how that will go?  haha

After a long day of therapy and shopping!

I'll leave you with a picture of Landen at the end of a long day of therapy and shopping.

New Shunt For BIG L

It was 4:00 this morning when Landen last ate.  He ate well, burped well, and fell quickly back asleep.  A few hours later, I woke up to get showered and dressed to take Zachary to school.  As I checked on Landen, I noticed he wasn't in his ALWAYS typical, extremely happy mood.  In fact, his whiny noises and cries led me to know that he wasn't feeling too well.

As I took Zachary and Lexi to school, I noticed Landen continued to cry and whine out in discomfort and happiness.  When I arrived at work, Landen vomited ALL over the countertop and floor as Tosh held him.  As has happened three times in the last month, Landen's shunt was malfunctioning and his head was filling with fluid.  Like the other times Landen experienced shunt malfunction, he obviously was sick.

Tosh briefly took Landen home and then on to CMC's Levine Children's Hospital.  While waiting in the ER, Landen continued to feel sick and hungry.  Finally, after several tests and consultations, the pediatric neurosurgeon recommended a shunt revision, concluding that the shunt that was placed in early June wasn't sufficient for his needs.

At the present time, Tosh and I are in the waiting room at Levine Children's Hospital.  Landen is in surgery right now having his shunt replaced.  Although we REALLY love the staff and everything about Greenville Memorial Hospital, we chose to stay here in Charlotte because Levine is a wonderful hospital and we won't have as far to travel if there are future shunt problems...Needless to say, I spoke with our Greenville neurosurgeon's nurse to get her opinion.  We REALLY like them!

We'll provide an update soon!  Say a quick prayer for Landen...The good Lord has blessed him tremendously thus far and will continue to do so.

UPDATE...

Monkey not feeling good

Monkey feeling GREAT after his shunt revision!

It's been 4 nights since Landen's shunt has been replaced.  Since then, he has done VERY well with it and seems to be comfortable and, of course, HAPPY.  We're quite thankful to the good Lord that things are going well for him.  I've added two pictures...There's a difference of night and day when
Landen feels bad versus good.

Our Trip to Holland...

"Welcome to Holland"

Written by Emily Perl Kingsley

Adapted by Ron Black

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.  It's like this....When you're going to have a baby: 

It's like planning a fabulous vacation trip to Italy.  You buy a bunch of guide books and make your wonderful plans; The Coliseum, the Michelangelo David, and the gondolas in Venice.  You may learn some interesting phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  When the plane lands, the stewardess comes in and says, "Welcome to Holland."

"Holland??" you say.  "What do you mean Holland??  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy."

But there's been a change in the flight plan.  They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place, but after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holand has tulips.  Holland even has Rembrandts.

And while everyone you know is busy bragging about Italy, you will say "that's okay, I went to Holland." 

Although the loss of that dream is a significant loss, if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the VERY special, the VERY lovely things...about Holland. 

FROM THE BEGINNING...

Our sincere prayer had been answered and our priceless blessing had arrived!  Our family was so ecstatic that Lexi and Zach missed school and Ron and Tosh missed work.  We excitedly started our road-trip from Rock Hill to Greenville, SC (approximately 1.5 hours).

Just the morning before, Wednesday, April 28, 2010, we received a phone call from our social worker (LDS Social Services) asking if we would be interested in adopting a beautiful baby boy who was being born with Spina Bifida and Hydrocephalus.  Our curiosity turned into a pleasant and happy shock when our question "when" was answered by our social worker who said, "in about 30 minutes."  

After briefly discussing the opportunity, we excitedly and gratefully said, "YES!"  On the day of his birth, Landen had surgery to repair and close the opening to his spine.  We were told we couldn't see him on the 28th so we left for Greenville early the next morning. For the next 5 weeks, we traveled back and forth to Greenville Memorial Hospital to visit our beautiful baby before finally being allowed to bring him home.  Our feelings toward the staff, nurses, doctors, facilities, other patients, etc. of GMH call for a different post altogether (amazing).


Needless to say, welcoming Landen into our home and family has been an AWESOME and eternal blessing.  We love him SO much we can't put it into words.  He is truly priceless!  We thank the good Lord daily for this Heaven-sent gift!