Since I have become a momma, I think I may have picked up a little bit a of fire...we won't call it a mean streak, more like 'no more mrs. nice momma'. Just like we were his advocates in the hospital , we are worse in the real world! Today I may have ruffled some feathers over at ECI. They were supposed to call us three weeks ago to check in on Miller. My phone ain't been ringin'. That call was also the time we would be scheduling another meeting and evaluation follow-up for two weeks later. So, that meeting should have been a week ago...follow? So last week I called and left a detailed message for our service coordinator. No call. Today I called her supervisor. The service coordinator called me back within a few minutes. Hmmm. Weird. Then she proceeded to tell me that she was just checking in and how are we doing? Ok lady, neither one of us is stupid, especially not me. We both know you just got your butt chewed, rightfully so. She offered to send me some literature so I could read up on where Miller should be. Um hello? We are definitely getting the brush off here. The rest of the details need not be mentioned, but she 's due here at 10:30 am. Don't mess with momma. Any momma.
In other news, we finally had to bite the bullet and give the boy some formula. 1-2 bottles/day. So far it seems like he's tolerating it well, but those toots are much stinkier and let's just not even talk about what is happening in those diapers. We go back to see the doc in about a week and a half I think. We'll get another weight then and a measurement [yay!]. Unfortunately, I think Miller's going to have to get some shots then too. At that point, he'll be about 6 months old and will get to go more places with momma.
At our next appt we are going to talk to Dr. Mirrop about referring us out to a private facility to monitor Miller's development and possibly get him in some type of OT/PT regimen. ECI is obviously not on the ball, probably due to the fact the Miller is doing so well. The problem with that is that often times certain delays or issues do not show up until 12 months, 18 months, or even 2 years+. So sitting around and waiting for him to not succeed is not an option for us. Every day I am reminded of the cold hard news delivered in the NICU and it's our job to do everything thing we can to shoot for the best possible outcome. My stomach just did a flip. I remember it like it was 5 minutes ago and that alone is a catalyst for us to reach for the stars. Sometimes miracles happen not just because we believe they can, but also because we help pave the way.
That about sums it up for now. Look for new photos in the next few days...
5 comments:
Great update, keep us posted!
Stephanie....he looks like such a happy little boy!! How handsome! :)
Traci :)
Hi,
I am a friend of Andy's and I read this from time to time. Miller is absolutely adorable. he looks just like Danny. I pray for you all everyday!
Best,
Mallory (Baker) Hickock
what a precious smile :-D
We love the updates!! He looks so cuddly :)
Teri, JD and Sarah Faye
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