Thursday, September 20, 2012

elijah's development update

Elijah crawling at 14 months....after many tears and many exercises to strengthen his core....He was determined NOT to crawl. Wanted to go straight to walking, which (unbeknownst to me) is a big no-no in the physical therapy world.

Our sweet Elijah
Now 29 months old...

After much prayer and struggle and knocking down the doors of every doctor we know, I've finally got some answers from the internet (I know, duhhhh, why didn't i think of that sooner?). We had a genetics test done a few months ago. The results came back that there is an abnormality on his 13th chromosome, but the lab and the Dr said they're not sure exactly what it means. So, I kinda forgot about it. I figured, well if the Dr doesn't know, then how would I get any info? Well after more struggle with speech delays and Elijah just not "getting it" I finally realized I need to do my own research on this particular chromosome (the exact gene is 13q22.1). I've always thought that there's something "more" going on with Elijah, other than just a delay.

Apparently there is an entire community of kids that have this same abnormality or something very similar. If there is a loss on this particular gene, there can be some very major issues (cancers, retardation, vision and hearing problems). Thankfully God has spared us from the severe issues. But, it also causes hypotonia (low muscle tone), speech delays, constipation, sensory integration issues...all of which Elijah has.

The information I found...

A network of families who have kids with the same "chromosome 13q deletion"
       can see the drool (low muscle tone around mouth)
and squishy legs
and torn-up knees from scratching (related to sensory issues)

Learning all of this has been enlightening to me! I feel a sense of relief. This whole time, I've felt a sense of guilt, like I did something wrong, or didn't do enough, that created his delay. That its my fault. But learning about this, takes the burden off of me and reminds me that we are all "fearfully and wonderfully made" by God and he doesn't make mistakes.

I also have been comparing Elijah to big Bro Micah and other kids and think "When will he ever talk correctly?" ..... but learning about this gene has put everything in perspective for me. Most kids who have this 13q22.1 have much more issues.

God has shown me that I'm completely NOT in control. That our times are in His hands. We are all flawed. We are all messed up. But thanks be to God that He will come again and make all things new again. I've also been tempted to fear about what all this means for our future- for Elijah, for our adoption, for our family. But, again, the Holy Spirit living in me reminded me "I will not leave you, nor forsake you" Joshua 1:5

I just have to say how thankful I am to ALLLL of these people that have been helping us for the past year, helping us sort through all of this!

  • Hattie Lett (Todd's Aunt)- a PT; first noticed Elijah's delay at 12 months; gave us many tools to stregthen his muscles
  • Early Intervention Valley Haven - Hattie, Tricia, Jennifer, Kelly (free!) - much encouragement, love, PT, OT and speech therapy; many practical tips
  • Precision Medical/Carrie Jinwright- Made Elijah's sure steps for his pronated feet (for free!); educated me more about hypotonia
  • Dr Rubin - a developmental pediatrician in atlanta; did the genetic testing; relieved our fears about worse case scenario
  • Dr Pitt- our chiropractor- stimulates nervous system, prayer, encouragement, nutrition support (sees kids for free!)
  • My Mom- encouraging us to see the developmental pediatrician
  • Our family in Auburn- Grandmother's biscuits and everyone else's love
  • ALL for children- more speech therapy
  • Debbie Vail- nutrition encouragement
  • Lakeview friends and nursery workers- much love and encouragement
  • The adoption world- opened my eyes to the world of sensory issues 
  • "Scratch me nots"...He cannot sleep without his scratchmenot on...He scratches 24/7
  • Dr Stiles- put tubes in Elijah's ears and took umpteen viles of blood for genetic test while he was under anesthesia
  • Our pediatrician, although they did not see the delays, have been helpful with the basics
What's next....Should we see a geniticist? Looking for more nutrition help to support muscle tone. Possibly Dr Adams.