We Kicked It!

Lucas is officially off seizure medication as of last Wednesday... happy day!! And so far, so good. He had a few days of being "off" in the last decrease in meds, but quickly leveled. I'm still nervous that he's going to have one and end up back on medication, but with any luck we will be forever done with that phase and that awful drug. I always hated having him on a drug that slows down the brain, as it needs every opportunity to make lots of new connections.

We saw our GI doctor and Lucas officially gained enough weight since the ENT surgery to escape the NG tube threat. What a relief! I have been obsessed with getting calories in him, and that combined with the good sleep he's getting paid off. We also got the green light to push forward with table food and work on feeding skills (we were advised to stay on baby food and not challenge him with textures to ensure he would eat a good volume). So many preemies have trouble with eating and textures, but now that we've moved to more table foods, he's really doing great. I swear, he just decided he was ready last weekend to take table foods all the time and we've had very few problems with chewing or gagging. Last weekend we were in IHOP and he was literally yelling at me to feed him more pancakes and bananas with every bite.

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We introduced another new doctor to his "team" this month. We were referred to a holistic pediatrician/ nutritionist by our DO that does his craniosacral therapy. She comes highly recommended and sees a lot of special needs children (and can be tough to get into without a referral). We spent a couple of hours doing an eval with her. She's the perfect combination--a holistic advisor and pediatrician looking at not only at his health, but also behavior, emotional wellbeing, and development--looking at the whole being. We went through his medical history, but also talked a lot about his environment, how he spends his day, development, eating, sensory, therapies, stress, etc. She gave us a homeopathic remedy used for hydrocephalus, recommended giving him DHA and a specific children's probiotic (to re-establish a healthy GI system after all the antibiotics and medical intervention he's had, and also feels it could help him eat better), and gave me a lot of nutritional advice. We have an interesting balance to strike between getting high fat/calories in him (which mostly comes in the form of unhealthy foods)! But also the need to get healthy food in him that can positively impact his neurological health, I believe wholeheartedly that diet can make a difference, especially for those medically or neurologically challenged. She asked me how he responded to movement (does he like being thrown or twirled in a circle)... I said "absolutely, he loves it!" She was surprised and said that was very unusual for a child with a brain injury. She also pointed out that he doesn't seem to be showing signs of typical sensory issues yet either, which is always assumed he will have. He does have adverse reactions to loud noises that scare him easily and doesn't like bright sunlight, but he doesn't seem to mind things like water, touch, and textures. The best part of her evaluation was how much she gushed over him, and she said several times that she was very impressed with his cognitive abilities and potential (something consistent we've heard from other doctors). I think when doctors learn of the extent of his brain injury, they assume some major deficits in this area. I mean, he's obviously behind due to all that happened to him from prematurity and meningitis, which was then compounded by all of the hospitalizations and brain compression existing all of last year... but the operative word here is "potential" and the signs he is showing right now. She made me tear up at the end of the appointment (as she was holding him in her arms hugging on him... not your typical pediatrician!), she said "Angie, he's sooooo smart, I can just tell, I am so impressed... he is really going to take off, you'll see." Its an amazing feeling to hear inspiring and hopeful words like this after carrying the emotional weight of all of this, I just want so much for him! I feel really good about adding her to our "all-star" team with her area of expertise, and can't wait to go back to see her again in a couple months.

Here's a few pictures from last weekend in Charleston, SC with the kids on Spring Break. We were visiting Seth & Mary Ann (Bran's brother & family).

"What's up?"

(riding in the car with his cousin, Landon)

Giving kisses Crashed out with Uncle SethSitting like a big boy at dinner

Daddy thought it would be a good idea to let him taste a lime

And here's how it went...Mary Ann & Landon Checking out Landon's Ride
Madalyn and Uncle Bran Always smiling
Cousins -- Anna, Madalyn, Lucas, Abby, Nicholas & Landon