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Tuesday, October 12, 2010

Adios NG Tube!

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!

5 comments:

Kim said...

Hurray - great news. And gorgeous picture! (By the way, it's grams. Kilograms is 1000 grams..)

welcome to our wonderland said...

LOVE that picture!!! so sweet!!!

this is great news and I pray that he hits that major milestone soon :)

Glad he is doing better and I'm sure he will catch up he was so sick maybe it will just take a while.

your in my thoughts and prayers and love Nolen updates :)

Brandie said...

Thanks Kim, we measure his weight in Kilos, but his gain in grams and pounds, all these conversions start to get jumbled!

I love this pic of the two of us!

Elaina said...

25 Kilos is about 55 pounds...I knew living in Europe would come in handy one day :)

I'm so, so happy to hear this, but I'm sure not as happy as you are! Good job, Mommy!

Brandie said...

I meant Kilograms...you guys are good!