Tuesday, April 22, 2014

18 Month Update

Gavin is now 18 months old!  It's hard to believe that much time has passed on this incredible journey.  I still get tears in my eyes sometimes when I hold him and I can't help but thank God for the miracles he has performed in our lives.  The baby that would have to be a medical miracle to survive...was born a miracle and survived!  Gavin has the most loving and adorable personality.  He still loves cuddling and his smile and laugh are truly infectious.  He is babbling more these days and meeting some milestones that we have worked months together to achieve.  He is able to sit on his own for longer periods of time, he is reaching out to grab things, putting more weight on his legs, making progress with eating and he is always blowing kisses.  He just did his first sign this past week by signing milk!  I am so thankful for each and every milestone.  Feeding is still a challenge, but we made progress this past week that made me literally jump for joy.  Most of us take learning and knowing how to eat solid foods for granted.  I have learned so much on the technical nature of feeding that I never thought about before.  Gavin is working hard at it and certainly making progress, but his nutrition is primarily coming from formula and pediasure.  We have been working closely with our doctors to find ways to help Gavin put on weight while we work through feeding therapy skills.  He is 18 pounds now and has been that same weight for about 9 months with no gain.  While he does have some cardiac concerns, those issues do not seem to be contributing to his lack of weight gain.  So our next step is to meet with a nutritionist and possibly do some blood work to see if there is anything else going on.  He's getting plenty of calories, but those calories aren't translating to weight gain.  Hopefully, we'll get some answers for how to help him there in the next month or two.

May is going to be a big month for us.  Gavin has eye surgery and ear surgery coming up.  Both are fairly time sensitive to prevent any long terms vision or hearing loss.  The surgeons are working hard to schedule the procedures at the same time, but we have to align the schedules of both surgeons, plus have the cardiologist give the blessing for his heart to undergo anesthesia and surgery, determine if he will have a cardiac anesthesiologist or a regular anesthesiologist and schedule post op care since Gavin usually has to recover in ICU due to his reaction to anesthesia.  Around June, we will get a surgery date from our general surgeon to repair an abdominal hernia Gavin has developed at his last abdominal surgical site.  Then, he goes back to the cath lab in August in an attempt to stabilize growing pressures in his heart.  Whew!  And with all of that, this year is still ten times easier than last year.  We are making so much progress and this kid goes through all of these trials and tribulations like a champ.  With milk and a rocking chair, this kid can make it through anything.

Now to share some AWESOME news of answered prayers.  Last July, Gavin had a sleep study that showed his oxygen saturation levels dropped below 80, 116 times an hour.  His brain had to wake his body up 121 times an hour to remind his body to breathe.  Gavin had SEVERELY obstructed sleep apnea.  The result of that was to have his tonsils and adenoids out.  We just repeated the sleep study last month and Gavin's oxygen saturation levels NEVER dropped below 90!  On top of that, his brain woke his body up ONCE to remind it to breathe.  We knew without improvements, that there would be the possibility of putting him on oxygen when he slept, other surgical options and possible cardiac intervention.  But none of that was necessary, because Gavin shocked us all (again!) by having such an amazing recovery.  We are so grateful to that surgeon.  Never underestimate the power of good news!

Please keep our little man in your prayers.  His little body has some more fighting to do.  Luckily, he's more of a fighter than anyone I have ever known.  I am blessed every day to be his mommy and to be surrounded by family and friends that encourage and support us.