Jax's pump rate is at 160mls/hr and still rising. It's just amazing. He asks for chocolate milk every day, and while he only sips it, but may take an ounce or two, the fact he's REQUESTING it daily is awesome. He grabs his cup and yells, "CHA MMM" :)
You know how some kids grab onto a phrase and say it non-stop every day? Well Jax says, "whuz da?" all day, every day asking what things are. I try to stay patient and answer every question, even if it's asking what a crack in a piece of the wooden floor is, or what a thread sticking off my shirt is.
The boys did well at school and therapy today. Brady is starting to always point as his mouth when attempting an "mm" sound as part of his therapy. I got a notice about 4k for the boys next year, but am a bit confused on how we'll handle the situation since we don't want the boys in kindergarten until they're 6 due to obvious developmental delays and their size. Well Jax's program is ONLY for 3 yr olds and would have to go into 4k with special needs support next year. Hmmm, I know it's best for the boys to wait an extra year before doing all this, so Jax's teacher (who agrees with me, but said she can't make the request) is getting the district's phone number to discuss this situation for the boys. The boy's original due date was mid-September, which would put them in kindergarten later anyway, so hopefully they'll listen to me and work with me on this one. All the therapists and Jason and I agree... the boys need an extra year for best academic achievement given the situation. Brady's speech therapist told me she really thinks one more year before 4k would be best for Brady as well. So stay tuned on how that all turns out.
Otherwise, business as usual. I have one week to see what Jax's tummy can do and then he has his swallow study at the hospital and his pre-inpatient meeting with the feeding team to set the "goals" of the program. EEK!
**Random question to the Internet world... has anyone's child experienced better digestion when taking corticosteroids? Jax is about done weaning from his Prednisolone, but also on a much higher daily preventative inhaler (Flovent) and I'm just curious if any of the anti-inflammatory properties could be attributing to his major tummy-improvement?
|The boys enjoying the game Hi-Ho Cherry-O, which is great for colors, counting and fine motor skills.|