Monday, February 4, 2013

Pukes, Pink Eye and IPads (tongue twister)

We're alive, just busy bees.
In weight-gaining news, Jax gets an extra week of food/gaining before his weigh-in since the GI clinic had a scheduling conflict. The woman said the team had confidence in our family to extend it another week, so we have two weeks from today. Jax has been keeping down all the extra feeds at night until tonight.
Brady started a cough on Saturday, and sure enough, Jax didn't keep his breakfast down. He has no cold symptoms at all, but that just means his inhaler is keeping his cough away. But I did increase his inhaler dose an extra puff each morning and night to really fight the cough.
Jax just gets such a weak tummy with a cold, so I've been doing covert special opps to take him off the night pump without waking him. If he wakes in the night with a full belly and a bug in the house, he can't keep it down.
Well tonight he was really running round with Jason and Brady, so he slammed a full glass of water... RIGHT at bedtime... hmmm. Yup, he got sick at the end of his pump, but thankfully he only lost about 2oz of his extra food. Yes, I find ways to make him fall asleep so he doesn't lose his entire tummy of food. I sit him up with the bucket for a moment, wipe his face. lay him down and then turn off the hall light (which I turn on when I go in his room) and sit next to the bed with the bucket. He'll maybe heave another time or two, but the darkness will make him fall asleep.
Yup, my time in the dark with a bucket is coming farther and fewer times between, but man, I never miss it! Or the smell.
Otherwise, even with a small cold in the house, the boys had a nice weekend. We had a couple friends over for the Super Bowl, which the boys were VERY excited about.

Today was a bit of a crazy Monday. All at the same time, Jax lost his breakfast and sprayed the entire toilet with vomit. Not IN the toilet, but all over the toilet, down it, under it. Then Brady knocked over picture frames breaking them, Jason realized he had pink eye and was calling the doctor and after all was said and done and things calmed down... the bus never came for the boys. And yes, Jason randomly has pink eye.
Ugh. So I packed them up and hauled them in.
Which ended up being a decent thing since I got to talk to the boy's speech therapist. Brady's IPad came in from the school district to use as his assisted technology to help him speak. The therapist needs to program it specifically for him, then she will let me know how she set it up so we can do the same at home.
We planned to use a small IPod touch that he could carry around and use frequently, but the therapist said it is too small for the program (Go Talk Now app). So we're waiting to see if we need to purchase an actual IPad or if maybe an IPad Mini would work.  I just can't imagine this 4 yr old carrying around a full sized IPad everywhere.
Every doctor and therapist we've seen over the last 6 months has recommended it and said it will really help with Apraxia because Brady will hear the word he wants to say which can only help him. Now when he wants to tell us something, we don't know what it is, and the whole point gets lost. He needs to hear the words and the doctors keep telling us that the moment he can say any of the words, he won't use that particular button anymore. Apraxia kids WANT to talk.
We want him to too...

The boys being total BUMS watching a cartoon while I make lunch.

Brady!

Medical supply delivery day. We're back to a pallet of formula again now.

3 comments:

Unknown said...

So sorry to leave such a random comment, but I cannot find your email anywhere on here. I work w/ a nurse that has super preemies that are almost 5 now. Her son is getting tall, but is quite thin (20ish lbs), and she's have a hard time finding him pants (jeans, specifically). Do you have any advice?? Thanks so much!

Annie and Jason said...

Hi there,
Pants can be hard, so she needs to stick to certain brands. Old Navy usually works, and also Cherokee from Target or some TCP.
The pants are usually rolled up and then the inner waste belt is pulled pretty tight.
We don't have tall boys, so it's usually not a problem to just stay with a smaller size pant. Jax wears a 3t perfectly, but our problem is that most of our 3t pants are worn out from being used so long, and I can't stand purchasing a size of pant that I hope/assume he'll be growing out of, so he kind of gets a bum deal and wears 4t all rolled up and scrunched up!

The Daley Update said...

I was just cleaning DS's closet and have a few pairs of 3T pants/shorts that I am going to give to goodwill. I think they are Carters and Children's Place. I would be more than happy to mail them to you if you want. You can reach me at vanndaley@gmail(dot)com