Wednesday, November 26, 2014

A Season to be Thankful

It has been a LONG time since I've updated everyone on Gavin.  He's two years old now!  It's amazing how far he's come over the past two years.  He's a superhero for sure.  Things have been super busy and Gavin has been accomplishing a ton of things!

We were able to start an aggressive Early Intervention strategy.  Gavin receives therapy services three days a week right now.  He gets feeding and speech therapy, physical therapy and developmental therapy.  We're going to add occupational therapy soon which means four therapy appointments a week.  That's a lot!  It does wear Gavin out pretty quickly, but taking such an aggressive intervention approach has allowed Gavin to skyrocket developmentally.  When we started in June, Gavin wasn't sitting unassisted, he wasn't interested in toys, he couldn't eat food or take clear liquids and he wasn't very communicative or interactive with others.

In five months, he is now sitting on his own and transitioning from laying down to sitting on his own. I had literally just talked to one of his therapists about wanting to work on the transition from laying down to sitting when I went to check on Gavin in his room, because he was laughing hysterically.  I went to see what he was laughing about and he was sitting up in his crib by himself!  He's also moving in circles on his belly now and scooting forward and reaching for things that he wants.  He's starting to get his knees under his body and rocking back and forth.  This kid is going to be mobile soon!  He loves working on the exercise ball which has really helped him develop great core strength.

He's also playing with toys now and playing interactively with us.  He likes to play catch.  He is studying his toys more and making purposeful sounds when he's playing.  Babbling with purpose is a huge achievement for him!  He loves looking at himself in the mirror and giving himself kisses.  He's a ham.  He is rotating his torso to reach for toys and is showing emotion when he doesn't get a toy he wants fast enough.  Five months ago, he was indifferent with toys and wasn't aware if one was taken.  Today he has specific toys he likes to play with and he makes consistent decisions to choose those toys.  He is aware when something he wants is gone and is able to express that emotion!

Five months ago, Gavin couldn't swallow purees or figure out to use his tongue to move the food to the back of his mouth to swallow.  Now, he takes twenty to thirty bites of food consistently and he enjoys it!  We still have a lot of work with tongue control and chewing, but he is able to take different flavors, different consistencies and different temperatures!  He will take a few sips of water out of an open cup and we are working hard on learning how to drink from a straw.  As far as speech, his receptive communication is fantastic.  He understands what we say to him and when we tell him to do things.  He is mimicking behavior and finally did his first sign last night by mimicking me when I signed "finished".  The joy of seeing him communicate with sign language was overwhelming.  That is such a significant milestone and we have been working hard on sign and spoken language.  This was the first big break through.  I know he will speak one day and in his own time.  But I can't wait until he can communicate with us more through sign language until that day comes.  I am so excited for him to be able to communicate what he wants.  We're close!

We have been seeing our standard group of specialists - cardiology, surgery, pediatrician, ENT and ophthamology.  Gavin still has pulmonary stenosis which we closely monitor and he needs his pulmonary valve replaced and his tricuspid valve is leaking.  In a couple of months, we will repeat a lung profusion study to see if we need to place a stent for the pulmonary stenosis or if the last angioplasty is still holding.  We're hoping that addressing the stenosis will allow us to prolong surgery for his heart valves, but that also depends on pressure levels in his heart.  He is consistently growing and his vitals are great so hopefully we won't need surgical intervention for a while.  We just had our last appointment with the surgeon.  Gavin is officially healed and cleared from his surgery in January.  He hasn't had any complications in the recovery process, but he is at lifelong risk for a serious infection so we just have to be aware and recognize those symptoms if they arise.  Gavin has two abdominal hernias that he will eventually need surgery on, but the surgeon wants to wait as long as possible to let Gavin's insides heal from the other four abdominal surgeries he's had.  The surgeon has transferred us to a GI doctor to follow long-term with Gavin's Hirschsprung's disease.  GI will help us work out a nutrition plan and teach us long term care plan to manage the Hirschsprung's.  So we don't need to see the surgeon again until it's time for hernia surgery.  But we'll replace those appointments with GI appointments now.  Gavin had tubes placed this summer and the surgery was the best one yet.  Gavin came off anesthesia with no problems (besides crankiness) and he had absolutely no cardiac or breathing issues in the 24 hours following surgery.  He had a sedated hearing test during that procedure, because all hearing tests up to that point had been inconclusive.  We had no idea if Gavin had hearing loss or not.  With the tubes placed, Gavin passed the hearing test with flying colors!

We have also been back to the Down Syndrome clinic.  The doctor couldn't believe that Gavin was the same kid she saw back in May.  Gavin has grown so much physically and developmentally and the doctor said she never would have expected so much progress in such a short amount of time.  Usually, the Down Syndrome clinic is a once a year visit, but they wanted to see Gavin back sooner because they were worried about his growth.  After this visit, we don't return for a year!  We got great nutrition advice for moving forward with feeding therapy and transitioning Gavin from a primarily bottle/milk diet to a more mixed diet while balancing his Hirschsprung's during that transition.  The nutrition will work closely with our feeding therapist and our GI doctor to have a team approach to moving Gavin's diet forward safely, but aggressively.  All of his blood tests are normal and he's healthy!  He is just small for his age.  He is 21 lbs now, but he feels like 30!  It is such a relief to be over the 20 lbs mark, know that his nutrition is giving him all the  nutrients he needs despite not getting a significant portion of solids and to know that he is steadily growing.

I still can't believe he's two!  He goes to preschool with Lorelai and he loves it.  His teachers are very proactive about working with his therapists and helping Gavin progress in class.  He is the only non-mobile kid in the class, but they were so wonderful to take him in and take such great care of him.  They have noticed that he interacts more with the other kids in the class than he did three months ago.  Lorelai loves walking him to class and seeing him on the playground.  He is thriving there!

I think that captures most of what we have had going on.  It's been super busy over here, but Gavin is making incredible progress.  All of his therapists and doctors are amazed at how far he's come since birth and especially over this last five or six months.  He is such a happy and cuddly kid.  He's only had to have two surgeries this year and certainly being able to recover and grow and just be a kid outside of the hospital has really helped Gavin be able to meet so many milestones this year.  As always, thank you for all of your prayers, encouragement and support!