The Nitty Gritty

In my last post I didn't actually give a good idea (for the few who are interested - if that is not you stop reading now!) of what we know,  what we don't know and what we are doing concerning Ezra.

What we do know:
-Ezra has gross motor delays (he is not sitting, crawling, standing or walking)
-Ezra has fine motor delays (not grasping things with fingers, etc.)
-Ezra has oral motor delays (his tongue moves front to back instead of side to side, etc.)
-Ezra is no longer FTT, failure to thrive, (5% in weight and 40% in height) and the failure to thrive was a result of breastfeeding issues (the tongue and lip tie prevented me from establishing my supply in the beginning and despite doing everything I read and learned from lactation consultants it could not be rectified)
-Ezra was released from the GI doctors care as he is growing well and there was nothing wrong with his internal workings (all the blood work and samples of stool and urine came back normal)


What we don't know:
-The cause of the delay's:  Dr. Jones, neurologist, has us completing genetic testing to see if that will uncover anything and give Ezra more time to overcome his delay's with therapy. The first round of genetic testing came back normal (it tested for missing or added DNA). A second round of testing is under way to see the DNA sequence is out of order we won't have results until October or November. Dr. Jones does not think that the lack of nutrition from the breastfeeding issues and FTT caused the delays but it probably did not help the delays. We see Dr. Jones again in September and depending on the progress Ezra has made with therapy will determine if we have CT's and further more invasive testing done.

What we are doing:
Therapy! Ezra is receiving Physical Therapy and Occupational Therapy. We receive services through ECI (early childhood intervention) and as much as I love his therapists and how much I want to like ECI I don't. ECI is not covered by Ezra's insurance and we have to pay out of pocket - it is ridiculously expensive. Yet I stuck with ECI because they were the quickest start to therapy and I could not for the life of me find a place that did pediatric therapy, was covered by his insurance, did not require and 40 min drive or actually had the therapists needed. However Ezra has not received PT in 12 weeks due to his therapist being on FMLA and the policies of ECI not allowing a part time or temporary worker, so I've started looking again for therapists and I actually found a place that has PT and OT that is 5 min away and they take his insurance, I'm waiting for the paperwork (insurance approval and doctor referral) to go through so we can get an evaluation and hopefully get the correct amount of therapy. I will be extremely sad to say good bye to Ezra's OT and PT as they are wonderful but the system stinks, cost too much and Ezra hasn't been getting what he needs.

What I  am not doing:
Living in regret. Regret is a big struggle for me right now. I could go on for quite a bit fleshing out all the things I regret in this walk with Ezra but really I'll just skip to the end and tell you what all my regrets boil down to: Trust - deep down it's a struggle to trust that God is in control, that he is good, that he loves me. While worshipping as a church we sang, "How he loves" and the line that got me and I keep singing to myself is "I don't have time to maintain these regrets when I think about the way, oh how he loves us, oh oh how he loves us, how he loves us all, how he loves" because really if I stop and consider the depth of God's love for me there is not room for me to regret so that's where I want to live is in his love!