The Toes...Part 2

Surgery day has come and gone and boy has it been an experience!  I have to say, I was very anxious all day the Monday prior to surgery.  I didn't sleep well that night and having to rise early on Tuesday morning to be at the hospital made for a tired, long day for all of us.  Todd and I were ready to leave the house by 5 am for Laik's 6 am arrival to Children's.  Laik was also up and in a very playful mood!  This excited me and made me sad all at the same time.  My precious had ZERO idea of what his daddy and I had signed him up to do!  (well, have done to him)  But in the end, I know his procedure will be worth it....so I am told.....I hope the doctors and therapists are right on this one!  I'm sure it was a good thing!

We arrive at the hospital, check-in, meet with all the key players to be involved with Laik's surgery, and then the anesthesiologist arrives....let the sleepy time begin.  All things are a go and he is wheeled on his gurney to the operating room.  Then two and a half hours later, this is how we see him when Todd and I go to the recovery room!  We had both a feeling of relief and a moment of laughter when we first saw him.  There he was with his feet wrapped in lime green Coband and an IV in his arm sleeping.  Not to mention, the "spray tan" of betadine on his legs!

Laik's surgery included "chiseling" down the bone of the metatarsal of the big toe of each foot.  He has stitches on the inside and glue, plus steri-strips, on the outside.  His feet were wrapped with protective gauze and Coband.  Todd affectionately named the wraps "boots" and we were able to remove the wraps on day 5 following surgery.  Also, during the procedure, Laik also had a skin biopsy (a piece of skin 4 mm in diameter was taken from his right hip area) and a blood sample taken to send to The Children's Hospital of Philadelphia for a study being conducted by Dr. Ian Krantz (Molecular Analysis of Pallister Killian Syndrome.)  Once being notified that Laik qualified as a patient in the study, Todd and I decided to submit his medical records and the samples.  In our opinion this study is just a small step in understanding and knowing more about Trisomy 12p.  We know there is no cure for Laik's chromosomal disorder. But if there is anything we can do to help research the disorder, we are willing to do so, as long as it is not invasive or potentially harmful to Laik.   The purpose of the study is to understand how having extra copies of the 12p chromosome region leads to structural birth defects and cognitive delays  AND to identify the critical gene(s) that lead to the physical features associated with the diagnosis.

As you can see, Laik was back to himself within 24 hours.  He was back on his play mat in the floor banging away on his toys!  There is not much that slows this boy down.  

On day 3, I entered the nursery to find Laik with his feet propped up on the side of his bed.  I was concerned about bumping his feet and he was just rolling around as usual!

Finally, we arrive to day 5:  Remove the wraps and bath day!  I anticipated seeing what was under the wraps and I was excited about being able to give him a bath!  Five days of no baths with Sir Sweats A Lot = Smelly Boy!  I think he was excited too!

Slowly, I begin to unwrap to see what is underneath....

This site of blood worried me a little, but I expected to see some....

And finally, we see the steri-strips and the bruises!  I did tear up and cry a little!  

All along, Laik watched as if he was wondering, "why is Mommy taking off my cool green boots?!?!"

I just had to add this picture.  He looks like, "WOW....are those my toes!?!?"

Poor little toes,  we hope to see them straighten within a year.  Dr. Moses told us it is a wait and see game to see how the bone reacts.  

The next series of pictures are from one week post-op. Steri-strip free, bruised and as close to betadine free as can be!

Todd and Laik were playing on the bed and I could not resist this toes curled opportunity.  See the bruises on the bottom of his feet too!?!?

A bottom and a top view give you an image of the space between his toes.  The left foot is the worst, but the incision looks the best!  

OBVIOUSLY, his feet are not bothering him too much.  He continues to grab and play with his toes and feet.  

Look at the hold he has on his big toe!  

Yes, he, the gummy grinned boy below had surgery just one week ago on both of his feet!  And don't let me forget to tell you, the gummy grin has gained ANOTHER tooth!  So, Laik now has TEETH!

Laik is recovering very well.  We have had a few long nights due to the teething process.  He continues to do well with his therapies and each day his personality is developing.  Everyday we continue to wake to sweet sounds through the monitor.  It is a sound that fills our home with happiness!  As we continue on our journey, I will keep you up to date on all things Laik!

Most of all, thanks to each of you for the continued daily prayers for Laik!  

 He brings joy to Todd and me like nothing we have ever known before!