Thursday, May 8, 2014

First Visit to the Down Syndrome Clinic

We have been BUSY with doctors this past month.  We have so much to be grateful for and our little man never ceases to amaze me with his strength and perseverance.  In April, we were making the rounds with doctors to coordinate ear and eye surgery for Gavin.  We have tried glasses and patching and were waiting on drops to help Gavin avoid eye surgery.  That process started nearly a year ago and every appointment has led us in the direction of surgery.  So now that the major surgeries have been completed, we were finally able to have Gavin's surgical consult for his eye operation.  We went in expecting to get a surgery date.  After careful evaluation and a second opinion, the doctor concluded that there is absolutely evidence of the problems he had been diagnosed previously and there was no need for further intervention.  No more glasses, no more eye patching and no surgery!  It was such an incredible blessing and relief to walk out of a surgical consult with the news that no surgery is required.  Gavin still needs surgery for his ears and he has an abdominal hernia at his old colostomy site, but his eyes are doing great!  Now, we only need to coordinate with two clinics instead of three.  So nice to see our little man get a much needed break.

Last week, we had an appointment at the Duke Down Syndrome Clinic.  I was excited about the visit, because I wanted answers for why Gavin hasn't gained weight in 9 months and how to progress developmentally.  At 18 months old, Gavin is developmentally 7 to 9 months old and it feels like we're at a stalemate.  To go somewhere so full of hope and answers was something I very much looked forward to.  First, we met with a geneticist who discussed Gavin's medical history and our medical history.  She told us not to stress about Gavin's development.  She said that Gavin has been through some serious surgeries and serious recoveries and that he is an incredible little boy to have survived what he has survived.  Now that things have calmed down, we can focus on development.  She reminded us to not lose sight of what Gavin has been through and to remember that coming home from the hospital is not synonymous with recovery being complete.  His little body went through more in 15 months than most people go through their entire lives.

Next, we met with a social worker who gave us great insight on various special needs programs and opportunities to look into to get Gavin extra help and aid as he gets older.  Some of the waiting lists are five or six years long, so knowing to get him on those lists now is crucial for making sure we prepare for his future.

A speech and feeding therapist met with us after that.  This was a meeting I really wanted, since Gavin has trouble with eating solids and isn't growing.  I don't want my little man to end back up on a feeding tube.  She took the feeding issues we mentioned and met with a nutritionist to figure out how to move forward.

Then, FINALLY, we met with the lead doctor at the Down Syndrome clinic.  She was looking over Gavin's records and taking in what all of the other people we met with recommended during our visit to get a comprehensive picture on Gavin.  She walked into the room and said, "First things first:  you two are marvelous parents."  That just took my breath away.  I know that other parents who have kids with developmental delays will understand this.  When your child struggles and doesn't progress like they "should", you really beat yourself up as a parent.  Am I doing enough therapy?  Am I pushing him hard enough?  Am I doing too much therapy?  Is he exhausted?  Why can't I get my child to eat?  What am I doing wrong?  Why isn't he crawling or putting weight on his legs?  What else should I be doing?  That is the mindset that I went into this appointment with.  A pleading for some medical professional to tell me what I was doing wrong and what I need to change to best help Gavin.  I couldn't help but smile when she made her comment about us as parents.  My thought was, "This is a doctor that really does get what we go through and I guess she knows what parents in the DS community need to hear."  How awesome that she takes the time to let us know that we're doing ok.

Her next comment was, "Gavin is one tough kid.  It is incredible what he has been through and that he is sitting here now smiling and so well behaved."  (Then Gavin started crying and she said she was going to take the last part back. Lol)  She recommended speech, feeding and physical therapy to help Gavin progress developmentally.  But she also reminded us that Gavin is a miracle and that he has survived more than most patients that she sees.  And now that he has overcome so many seemingly impossible obstacles his first year of life, we can now breathe and work on his development.  She has put priority on his feeding, nutrition and weight gain, but she said overall she's not worried.  He hasn't had a chance to just be a baby and grow like most babies do, but this year should be his year to just be a baby.  That warmed my heart.  I haven't ever thought of things like that.  And I really forget most days that our norm is not the world's norm.  So to step back and hear that Gavin is doing awesome was something I really needed and didn't even realize it!

Today we had an official speech and feeding therapy consult.  I was a little dejected afterwards, which is what reminded me that I needed to write a post tonight.  We have too much good news to get discouraged now.  They recommended that Gavin go to speech and feeding therapy three times a week.  THREE times a week!  That doesn't include his physical therapy appointments, specialist appointments, primary care appointments and somehow we have to figure out how to work in between all of it.  That is so much intervention and care and I don't mean to complain, but that many appointments gets to be overwhelming after a while.  And it gets to be exhausting for Gavin.  We will absolutely do whatever it takes to support him and get him the care he needs, but hearing how much help he requires just leaves me dejected.  Back to the thoughts of what haven't I done?  What else could I be doing?  How can I help him more so that he doesn't need this many appointments and therapies?

So I made myself go back to when I found out Chris was deploying knowing all of Gavin's health complications.  The first moment I saw Gavin in the ICU and everything was so REAL for the first time.  Seeing the first scar on his perfect little body. Watching him crash in the ICU.  Sitting in the waiting room while he went through open heart surgery at 18 days old waiting for the dreaded call no parent wants and few have to be in a position to wait for.  Realizing that I would have to put a feeding tube down his nose and throat.  Finding out part of his colon died.  The moment seeing a colostomy on my child weakened my knees.  Learning to care for an ostomy.  The many gut wrenching moments I handed my son over to a stranger with the faith that they would save his life or improve his quality of life.  And going through all of those past moments and those feelings put our current challenges into a completely different perspective.  None of it seems so overwhelming anymore.  People have it so much worse than we do.  Heck, we've had it much worse than we do now.

We have great medical care.  We have a great support system and so many people lifting Gavin in prayer.  We have so much to be grateful for and are blessed more than most.  We have our little miracle, who apparently isn't quite finished being so miraculous.  He has changed my heart and soul forever.  Thank you so much for continuing to follow our story and for keeping Gavin in your prayers.