Gavin is officially six months old and going strong! I am in awe that I am sitting here writing this, thinking of the fear and uncertainty that filled our lives six short months ago. We are more blessed than any family should be.
Gavin just weighed in at a whopping 11 lbs 6 oz. He's in the fifth percentile for height and weight, but he is steadily gaining and holding to that fifth percentile line. So while he is still quite a tiny warrior, the size of his fighting spirit is massive. Three operations, a heart catherization, and two ER visits down and he is doing amazingly well!
His size and developmental milestones put him at about a three to four month old age range. He spent his first three months in the hospital having operations, so I see this as God's way of giving those three months back to me to spend with my baby boy. The times that I couldn't hold him when I wanted, or the days he remained unconscious...God has been so gracious to give me that time back with my son.
For DS babies, six months is a pretty big milestone. It starts a whole slew of other appointments and preventative care measures that track his health and progress, so that we may intervene as soon as possible for any other challenges that pop up. For the month of May alone we will:
*Return to audiology for another hearing test
*Go to opthamology for an initial eye exam
*Draw blood work to check thyroid levels
*Repeat newborn screen blood work (It came back abnormal for certain cell counts at Duke, but Gavin has had so many blood transfusions, that we have had to wait until he is back to all of his own blood before a repeat test can be drawn)
*Blood draw to determine if Gavin is anemic, or if there is some other reason why his color is dusky
*Cardiology for the start of his once every three month echocardiograms (down from once a month!)
*Physical and Occupational Therapy once a week (There has been a freeze on services for folks on the wait list, but that freeze lifted and we were pushed to the top of the wait list due to the severity of Gavin's needs for therapy. I am SO excited to get started and see what my little man can do!)
*General surgery just to check in with Gavin's ostomy and prolapse
*Pediatrician for a weight and vitals check just because she likes to check in on Gavin every three weeks :)
Whew! Looks like all of my vacation time from work will be in doctor's offices just for the month of May! But I don't really mind. It is more time during my day that I get to spend with my baby boy. Sure, it's not the most ideal of settings, but I still get that time that I would normally not have while at work. And, by the end of the month, we will have an even clearer picture of his health status and hopefully check some things off until he hits his one year mark.
But, as many of you already know, May won't be SO overwhelming with appointments and therapies.....because help will soon be flying back over the Atlantic! For every one of you who helped us by writing letters to our Congressman, we thank you! His office was able to move mountains that wouldn't budge before that inquiry was filed. You took a few minutes to write a letter on our behalf, and in doing so, you helped bring attention to our case which resulted in a hardship transfer being granted! I apologize for all of the exclamation marks, but there is so much excitement, anticipation, hope and RELIEF that my other half will be home soon. Everytime Lorelai hears a plane, she asks if it's Daddy coming home. I can't wait to tell her when it really is!
So wow, this past six months has been one heck of a journey full of some pretty hard and challenging times for our family. But we survived it as a family. Watching our child struggle and fight for his life from the day he came into this world is something that has forever changed us. Watching him win that fight and become a medical miracle has forever changed us as well. We have been fighting uphill battles for many months now. But, it seems as if we are just reaching the peak of the mountain and taking in the breathtaking view of God's beautiful world. Our son is STILL HERE and is growing stronger each and every day. Our family will be together again soon. Our guardian angels are surrounding us in full force. And peace fills our home and our hearts.
We are certainly aware that we have more battles and surgeries to fight with Gavin.....but, for now, can I get an amen to the off-season!