Friday, November 8, 2013

Stanford Team Visit

This week we took another trip to Stanford where Henry had his big "team" check-up.  Basically, we had the chance to meet with every doctor and specialist that will be involved in the process throughout Henry's surgeries and yearly development.  They each were able to examine him for their own field, talk to us and guide us through our next steps.

Smiling at doctors!

Here is a little summary of what we learned:
  • Plastic Surgery:  Dr. Khosla was very pleased with his lip repair scar and said it is healing wonderfully. The pink coloring of the scar will take a full year to fade.  
  • Genetics: Henry's children will only have a 2-3% chance of also having a cleft lip or palate. This was great news and a big concern of our's explained.
  • Dental & Orthodontics: The teeth that Henry already has (2 on bottom, 1 on top) look great. Children with clefts are more susceptible to weaker enamel, i.e. more prone to cavities so we have to do our best to keep the baby teeth in and strong for as long as possible.  There is already a lack of bone structure because of the cleft palate, so it's important to maintain what he has until his adult teeth grow in.  Once his adult teeth come in (8 or 9 years of age), he will have an oral surgery to fill in structure wherever it is still needed (bone will be taken from his hip for this) and possibly an artificial tooth if needed.  
  • Speech Therapy: Henry is doing well with the baby noises that he is currently making.  As he gets older (in a few months), he may have trouble with some of the consonants, however this will be fixed with his palate repair.  The speech specialists will continue to monitor his development after the palate surgery as he begins to speak.
  • Audiology: Henry went through a serious of hearing tests is a sound proof room with various speakers spread throughout.  He was very responsive to the loud noises however some of the softer, white noise, he was less reactionary toward.  He then took some hearing tests with sensors attached to the bone behind his ears and did very well.  She let us know that the fluid is making his hearing a little muffled so we need to be aware to talk a little louder than normal to him to ensure he gets proper stimulation.  Once the palate is repaired, the fluid will be gone and he will no longer have the muffled hearing.  
  • ENT: After an ear exam, the ENT doctor confirmed exactly what the Audiologist told us - he has quiet a bit of fluid in both ears.  She explained the anatomy of the ear and because of the cleft palate, the muscle that usually controls the opening and closing of the eustachian tube is missing which causes fluid to get trapped behind the eardrum.  It doesn't cause any harm, except for the muffled noise.   
We also set a date and learned a lot more about his next surgery, the palate repair:
  • Palate Surgery: Scheduled for April 4, 2014.  Dr. Khosla wanted the surgery to be right after his first birthday which is March 22.  This is to give as much time as possible from his first surgery, but before he begins talking. 
  • About the surgery:  Dr. Khosla will remove some tissue of the mouth lining from the sides of the roof of the mouth to the center to close the cleft.  All of the tissue for the repair is there, it's just separated.  There are many layers of tissues so there are a lot of cuts that need to made and special techniques to ensure the muscles will be able perform properly for speech development.
  • Recovery: The stitches will dissolve on their own in 2-3 weeks.  During this time, Henry will have to wear the arm restraints (No-No's) just as he did after his lip repair to make sure he doesn't touch the stitches.  He will only be able to eat soft/mashed foods with the restriction of spoons, straws, pacifiers, thumb sucking, etc.   
Here are some pictures of the last couple months!

5 months
                   
                    6 months
7 months


Halloween!