Nolen is gaining the bare minimum for each day (25 g or kg...which is a big difference I know, I just can't remember which and I sincerely suspect it's kg, but I'm so not sure). This is HUGE! We can take the tube out and stop the weight pre-and post feeding. I won't say the tube won't have to go back in, but I will say that for now, my sanity is just a bit more secure since I am no longer have to reinsert the tube on a near regular basis. Each week we will be doing weight checks at the med group to make sure he keeps his weight up!
Since Nolen's weight/feeding seems to be improving, we are now going to start focusing on other aspects of his condition. Nolen is still developmentally delayed (very much a newborn in most areas). The only area he appears to be on point with is socially he will engage with you and attempt to make noises (they think that part of his delay in "speech/cooing/laughing/squealing" relates to his lack of tone). With that said, here are the big plans for his care.
-Continue weight checks, but stay OFF the tube!
-See a neurologist. His Ped and the Early intervention team all feel that we should start seeing a neurologist due to the fact that there hasn't been any marked improvement in his physical tone/strength nor a large developmental milestone. We've also noticed a slight difference in the sides (left side versus right side) that would indicate possible issues neurologically.
-Start weekly physical therapy with Early Intervention through the state. In about three months or sooner, we will reevaluate Nolen's condition and start Speech as well as Developmental Therapy. If needed we may also start Occupational Therapy. Our goals for physical therapy is to see Nolen moving or making an effort to move and for speech we hope to have him babbling.
We haven't classified Nolen as anything, or pushed for him to get into the programs offered by the military (EFMP or ECHO) to get him access to more intensive care per the advice of our Pediatrician. She cautions that once an EFMP is started it's hard to "undo" and that would be a quasi permanent label for what we foresee to be a temporary condition. She also says that Tricare should cover due to the lack of a diagnosis...so it looks like more fighting with insurance lies ahead for me!
I'm Brandie and I am currently a stay at home mom to two beautiful girls and a sweet baby boy. My darling husband is in the Air Force, and for all intents and purposes, you can assume that he is gone to where ever it is that he goes! I love to read, write and help others as well as teach my children. This blog is mostly for family to follow along on what goes on in our crazy but loving household!
Kaelyn is five years old with an old soul and manners to match. She's a very easy child with a curious mind and a mouth that never seems to stop! Loves ballet, her friends, and even her little sister and brother! She has a mild obsession with princesses but absolutely ADORES mermaids and can't get enough dinosaurs! I'm currently homeschooling Kaelyn, but am excited to see how public school kindergarten goes for her next year.
My dear sweet 2 year old, is a very passionate child with high highs and low lows! Anna's STILL eats anything you put in front of her. Her favorite phrases are "Don't wanna" and "Love you" . She loves to climb, developing a love of puzzles and can talk nearly as much as her big sister. She loves her baby brother...sometimes a little to much. Her personality, laugh and smile are contagious, which is a good thing since she is ALWAYS up to something! She can charm her way out of any situation and into any heart. With her impish grin and ways she can be a challenge
Nolen (with Dad for support)
Our sweet new addition, Nolen started out life waiting til the LAST possible minute before his Dad was due to leave to arrive. I have a feeling this guy will be all about "perfect timing". Nolen became ill during one of his dad's deployments in Sept. 2010 and was later diagnosed with MeningioEncephalitis. With a diagnosis of Encephalitis, the future is a bit of a question mark. We balance his therapy needs with a desire to keep life as normal as possible for all of us. There is no real indication of which way this journey will take us, but it is one full of love, adventure and a thankfulness for the many blessings of a God who is unchanging, a Family who always sees the silver lining, and Friends both real and cyber who encourage when things seem a little too overwhelming.