Tuesday, January 10, 2012

Watching a daily miracle

I can't get over Jax's progress... like I'm having dreams about him eating. I keep catching myself daydreaming about these things and need to remember to take a step back. Of course my hopes have gotten up with the upcoming feeding clinic, but I need to keep expectations in check... to protect my nerves more than anything!

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.


Wiley said...

Go boys!!!

Michele said...

Great news!

Sarah T said...

Hi Annie,
I was one of your nurses when you were in patient and preggers with the boys at Froedtert. It's just amazing to see these boys and how far they've come. The only thing I can think of for Jax is that steriods increase hunger, but that doesn't necessarily seem to fit your question. I am praying for his progress at CHW in the program!
Glad to hear you and Jay are doin well too!

Take care,
Sarah T

Christina said...

The oral steroids make you hungry very very hungry. Alos can make you cranky! We meet with the feeding and swallowing team in 7 days (short notice) if this does not go good we have no choice but to go the tube route talk about a sucker punch today.

Michelle said...

my claire ate a TON when she was on steriods. she also had no vomiting but continued with her diarrhea. she didn't gain any weight on them though but she was only on them for one cycle to get rid of croup. i asked if we could keep her on them to help her with weight gain but my doc said no because she was still undiagnosed and it could mask her problem thus making a diagnosis a bigger mystery. but i always wondered if that was helping her.

also, we waited on kindergarten one extra year with my other child, charlotte and it was the best decision ever! she has some speech delays and she still does so her delays didn't go away but what has improved is her ability to sit still and focus. so, i feel like while she might still struggle to read, she will have a bit more maturity under her belt to sit and try longer. and in california, kindergarten isn't mandatory, so it wasn't an issue at all when it came time for her iep and planning her year. rather than writing the iep with transition to kindergarten plans, it was basically just a repeat of the year before.

Heather said...

I've been reading on my phone and can't comment, but this post made me finally fire up the laptop. This is wonderful news. Love and miss you!