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!  

The Toes...Part 1

Tomorrow, on September 13, we will rise very early and take our precious Laik to Children's Hospital here in Chattanooga to have surgery on both of his big toes.   He has a bone deformity called "bracket joint epiphysis."  The only solution is surgery because eventually, we do want to wear shoes and walk!!!

As you can see below, we have known about the left foot since my ultrasounds in May 2010.  (I'm sorry about the pics being the wrong way...the Droid and I have alignment issues!!!) 

In the photo below, you can see his chunky little fingers tugging on his toe.  He still does that for now, after surgery, we shall see! 

Please be praying for us and I will be putting post-op pictures up when I can!

Laik Goes to College

When Laik was just a bit past six months old, a family friend asked me if I was interested in Laik being a non-typically developing "model" student for a "Pediatric Neuro" class at UTC for junior year physical therapy students.  I agreed and off to the university we went!  It was a pleasant experience and it was also delightful to see the students (about 25 in the class) studying Laik.  We survived that class and they invited us back again a few weeks ago. So, we packed our backpack and headed into an "Advanced Peds" class, which is offered to Senior Doctorate of PT students. This class had five of the students from the previous class.  And Laik gave them a show....and a workout!  He's a bit bigger now than he was in January!  Dr. Cathie Smith is the professor of both courses and we were happy to see her again too!  

Take a look at Laik's experience!  

Ok, the warm-up begins with some of his toys from home.  The fold-out book he is holding is a favorite.  It makes a rattle noise and has baby faces and a mirror on the other side.   

 Checking out his stance.  And he started using his moves on the girls at this point.....

 Grinning, babbling and quite honestly....flirting a little bit!

 And the next thing I know, all of his clothes were off!
The students did ask permission to do so.  It allows them to get a better look at his movements and allows fewer restrictions while working with an infant.  Granted, he doesn't look as if he minds showing off his muscles!

 At this point, he is exhibiting "lots of extension" and attempting to get into and stay in the four point position.  We have been working on this quite a bit with Stacey and Lissa during his PT and EI sessions.  It is a work in progress for sure, but we are getting there!  He is very strong.  Once, he comprehends how to put it all together, we just might be in the crawling business.....we shall see!  Fingers are crossed and sending up prayers for that to happen!

 As you can see, he is not a fan of this position!  Notice the student on the left trying to keep him from extending his legs.....

 Ah Ha!  There's my book, I'll relax a little bit.  

 Four point and stable with the help of a bolster!   Way to go Laik!

 Look at that sweet face....he is trying to convince the students to let him rest a little bit!  That face is difficult to resist when he looks at you with those beautiful blue eyes and grins!

 Lucky guy, in his favorite position....Sitting and reaching for toys....a ball, it is always a ball!  

 At this point, we are about an hour into the class and Laik is yawning.  Physical therapy is hard work and very exhausting.  But certainly, very rewarding.  Todd and I see results each time we do our "homework" after PT sessions.

 Tracking overhead.  This is a difficult position that requires balance and core strength.  Look at my baby boy clapping and balancing while tracking overhead!  Again,  I am so proud!

And finally, ringing the bell to end his class!  

Laik's two visits have been a workout for him, but a pleasure for me.  It gives me joy to know that there are students in PT programs all over the country that choose to go the PEDS route. These students are passionate about what they do.  They have a desire to help the children to improve.  I whole-heartedly believe that milestones are accomplished by children with disabilities due to the help of physical therapists!  

A great big thanks to Dr. Smith and her class.  Also, to Stacey, our PT extraordinaire, for being Laik's agent and lining up our visits!