The kids had a great time yesterday with Marshal and Cecelia. The kids just ran around like lunatics, wrestled, played air hockey, Hungry Hippos and pulled CeCe around like a princess on a scooter.
I spoke with Jax's doctor about everything, and we both feel comfortable waiting for his scheduled appointment with the full team on Monday.
Jax is doing better with food. He still doesn't like to drink a lot, but it seems to be working out. I didn't have to put him in time-out at all since yesterday, but he is doing a puke for about half the feeds now, and I do think some of it is behavioral. So we'll be working on with the doctors.
I can't imagine that Jax gained any weight at all since coming home from the hospital, so I'm kinda cringing at the thought of what that scale will end up saying.
I'm waiting for a call back from the school district to discuss services for the boys at the age of 4 next fall, but not going forward with 4K. I have no idea how we will work it out, but I hope they understand why I (and all the therapists and teachers) believe the boys need an extra year. This wouldn't be a big deal if they weren't using the special-ed services from the school district.
The rest of the week is pretty standard. Jason is out of town until Friday and I have stacks up to the ceiling of work to process that will keep me busy each night and stolen moments during the day. Jax will see the chiropractor for the first time in a month tomorrow. Then the boys have speech/feeding on Thursday and school Friday morning. Let's hope for a quick and non-eventful rest of the week!
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| CeCe put on the boy's dino costume and then chased them around! |
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| Mars and the boys wrestling. |
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| Good ole' air hockey |
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| We told the kids to pose for a photo and Cecelia laid out like a queen! |
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| Awe... hugs good bye! |
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| This is a benefit for Children's Hospital of WI happening on Sunday. Jason and I will be there with the kids, and I will be speaking around 2pm to help raise money. I've always wanted to take the boys to an Irish bar in the month of March ;) |
1 comment:
I know it's pretty much impossible, but try not to let the scale taunt you too much. I'm sure you'll get great guidance from jax's team. FWIW Evan dropped from 21 lbs 12 oz to 20lbs 6oz while tube weaning, and it took nearly 4 months for him to get back to pre-wean weight. It was awful emotionally, but in the end he's doing great.
Evan also had behavioral puking, still does rear it's ugly head from time to time. The only thing that worked for us for a long time was completely ignoring it, just continuing on as if nothing happened. It's SO hard, but for us it worked. The down side is any attention for any puking and it would come back, so even legitimate puking had to be ignored at our house.
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