Strong Man

When I was growing up, my mom always told me to make sure I picked friends out of people who were better than me.  That way, they would raise me up to be a better me instead of me lowering myself to match their standards.  At 13 years old, I was constantly annoyed by this ‘rule’, because like all 13 year olds, I was certain there was no one better than me.  Thus leaving me completely and utterly friendless!!  Now, at 34 years old, I have come to terms with the fact that I am surrounded by people who are endlessly better than me – and I am ok with that.

I have kept a list of the strongest people I know since I was 18.  The top 5 tends to change as people come and go into my life, but for the most part, the list has remained constant – even in death when I have lost people on my list.  They stay on the list because what they taught me in their lives still impacts me today and continues to push me to be a better me.

These people – young and old, male and female, living and deceased – are on the list because they have overcome great trials, beat death defying odds, give of themselves without asking anything in return, and exist as themselves without ever apologizing for who they are.  They are all beautiful and I could never be me without them.  They include, but are not limited to: my parents, my husband, my sister, my best friends, my grandmother, my great-aunt, and today – my son.

I know what you are thinking – he is only 2½ months old and has not lived long enough to be one of the strongest people I know.  But he is.  After everything he has endured so far – surgeries, feeding troubles, the Latham Device and all that comes with it, choking issues, weight loss, a terrible cold with nowhere for the snot to go, and a host of other things – yesterday he had an external piece added to the Latham Device and came out of the 2-hour torture session smiling.  In fact, for the most part, he is always smiling.

I always worried I wouldn’t have enough strength to get him through all this; but as it turns out, I am now pulling my strength from him.  

So, regarding that 2-hour torture session.  As previously mentioned in earlier posts, the Latham Device has been working extraordinarily well at moving Gabriel’s gums and palate around.  What it is not doing yet, is moving Frank.  Yesterday we had to go to Coldwater, Michigan for an appointment with our ortho doc who constructed the device.  He has been working on a piece to add to the device that would 1) move Frank to where he belongs, and 2) attempt to stretch the existing tissue (or Gabriel’s upper lip) on top of Frank.  Our doctors have been concerned that Gabriel just doesn’t have enough tissue to use during the lip reconstruction, so Dr. W is attempting to create more tissue by stretching what is there.  I had asked in the past if I could donate tissue to him, but the answer was no.  If they can’t stretch the existing tissue enough, they will be forced to take it from elsewhere on his body, such as behind his ears or knees.  When they do this, you then have other things to worry about like rejection, infection, additional scarring, and pain.  It’s not ideal.

Amazingly, in 16 years of fixing cleft lips and palates, Dr. W has never done this before, nor used an attachment like this to move other babies’ Franks, so our Gabriel is really playing the part of his guinea pig.  And so far, he is playing it well.

During the appointment, our Gabriel actually fell asleep a couple of times while Dr. W was making adjustments to the piece – for ease of conversation, we are going to call this piece ‘the Frank Mover.’  The Frank Mover is a spring-loaded device that has two little hooks that hang on in Gabriel’s nostrils.  The top of the Mover sits atop Frank, both pushing Frank down and applying pressure to the tiny lip that is there.  There are two chains that attach to the Latham Device to hold the Frank Mover in place and will be adjusted to tighten the pressure when Frank starts to move.  Since this is something entirely new to Dr. W, we don’t know how long Gabriel will have to wear this.  It’s really just trial and error right now.  I can tell you that Gabriel has managed to pull the Mover off 3 times in less than 24 hours, so it could take awhile.

There is really great news in all of this though.  The Frank Mover has not impacted Gabriel’s ability to eat and – wait for it – I no longer have to turn the screw in the Latham Device!!!!  I started noticing a couple of days ago that the screw was getting harder and harder to turn.  Dr. W confirmed yesterday that his gums and palate have moved to where they should be, so the work of the actual Latham Device is complete!!  This is really very exciting!  Gabriel has only had it for 3 weeks.  The baby our cleft team worked on before Gabriel had his in for 4 months and his parents were still turning the screw all the way up to the end of the 4 months.  I guess perhaps our baby is an overachiever!!  I can’t imagine where he gets that from…

So now we wait and see what happens.  I have to take Gabriel back to Coldwater on Thursday for Dr. W to see how the progress is going and determine if his experiment is working or not.  

I just can’t believe how strong someone so little can be.  I am amazed and in awe of my child.  My fears are being put to rest by how well he is handling all of this.  To say I feel blessed would be a huge understatement.

I have included pictures of the Frank Mover and a couple others that are just for fun!  Until next time…

The Frank Mover - I know, he looks unhappy - but I am pretty sure anyone wearing this thing would look unhappy!!

My boys - please excuse the pizza sauce and remnants of Ethan's cold on his face!!

Because I love wide smiles!!!!