Update on Connor's health

We hope everyone had a very happy Easter! I spent Easter working, taking care of the sick kids while Connor and his daddy spent all day with the family. I figured it was time to update on Connor's health status since the last 2 post haven't included any of that.

age: 12 months/ 9 months

wt: 18lbs 4oz

ht: 27"

I hate to report this, but....Connor has started vomiting again :( It started around 3 weeks ago. I am guessing with all of the gagging (which happens all the time), that his nissen has started to stretch. It is really disappointing because I was hoping for his nissen to last longer than 2 months!! It isn't the huge amount that he did before surgery, but it is definitely more than wanted. So we have tried a few things with his feeds like decreasing his volume and slowing down his feed rate on the feeding pump, nothing seems to really make a difference. Once again, Connor doesn't have a consistent pattern to figure out what is triggering the vomiting. He goes to see his GI doctor at the end of this month, so we will see what our next plan is.

As far as the feeding clinic, Marcus in Atlanta goes...well our insurance refused to cover treatment there. :( I believe I have cried all my tears on this subject and have decided to go the route insurance wants us to at this time. I was going to appeal, but you have to receive the service's first and then appeal. I am not comfortable knowing that we may have to pay everything, 100% out of pocket.Not to mention, I don't even want to think how much this specialized clinic would cost! I have spoken with Marcus and of course they accept Medicaid but Connor's secondary insurance (Medicaid) expires at the end of April. Therefore, timing is rather poor and not likely that he would get approved and have all his treatment complete before that expires. He qualified for the first year of his life due to his birth weight, thankfully. Now, I am in the looooong process of applying for Tefra (basically a type of Medicaid for a disabled child that doesn't meet the financial requirement for basic Medicaid). If he gets approved, then we will start the application process again at Marcus. So for now, Connor is getting therapy at my hospital's outpatient rehab facility every week, along with speech twice weekly at home.

The feeding therapist is very nice and has taken multiple classes at Marcus Center, so I am hoping she is our "Marcus Angel in Columbia". We have an entire different approach with feeding right now, and Connor isn't digging it. Who am I kidding, he doesn't dig anything that involves food! Only time will tell if this works, so I will keep you updated. From his last evaluation, it looks like this is going to be a long road to get to his full potential of eating by mouth.