UPDATE: Just to answer the "why not 'on the go'" question: Jonah will throw up if we don't get the blended mixture (about 5-6 oz of food with 3 oz of formula) to a thick pudding consistency. It can't be pumped, but has to be pushed at a rate of 10 cc's every 2 minutes. Given the fact that it has to be blended, pushed at such a slow and continuous rate, and just the fact that it's a MEGA mess (think green and purple goo flying up and hitting the ceiling as you try to shake/push out air bubbles), it's just not conducive to "on the go" feedings. The only place I'll feed him is a kitchen where I have access to a microwave (for thawing blended cubes), electricity (for mixing in the Magic Bullet), and a sink (for clean-up). Thanks for the thought though. If only it were as easy as Pediasure in a back-pack pump. Unfortunately for us, that means PUKE CITY.
Jonah continues to NOT eat. We had our evaluation today by a speech pathologist, and basically, it boils down to this:
- Speech can't work with him on the tongue thrusting thing if HE WON'T EVEN OPEN HIS MOUTH.
- Speech can't do much if he's refusing all together and has a psychological issue, not a physical issue.
- He definitely has a psychological issue (in my opinion).
- Kids Eat will only see him in their environment, not his, so his eating is not representative of how it is daily for us.
- It will be three more months before Kids Eat will see us again. In the one and a half months (ish) since we've seen them, he's regressed A TON.
- The OT who we need to work with will not have openings until the Fall.
- Even then, I'm not sure what we'll be able to do for him.
- We will soon be getting an evaluation from a psychologist to determine what I already know.
- The psychologists only do evaluations, not therapies for feeding.
What does this mean for Mommy, Daddy, and Jonah?
- Continued one step forward, five steps back.
- Mommy's getting more frustrated, Jonah's getting more frustrated, Mommy's getting more frustrated and so on and so forth.
- We don't even have a chance to get out of the house until 2:30 (you know, the hottest part of the day) because we do feeding, bath, dressing change, nap, and another feeding before we have "unscheduled" time.
- We can't make any morning trips anywhere.
- We can't go anywhere for more than a two hour period.
- We can't meet anyone for lunch.
- We can't feed in public or be anywhere other than home (or a home where we feel comfortable hauling a huge bag of food and supplies) for feedings.
- If we go out when Matt gets home, we have to be home by 6:30 to feed him. That gives us about an hour to get out and do anything as a family.
- Feedings take an hour because we can only do water/food through the tube at a slow rate.
- Jonah's aversion to sitting in his high chair is growing.
- Mommy's aversion to trying to keep him content and entertained in his high chair for at least three hours a day is growing.
I can't begin to explain how incredibly frustrating these kinds of feeding issues are. You only get it if you've been there. Just take my word for it. I tell people all the time that I can handle the blister popping and bandage changes, but the feeding stuff is going to SEND ME OVER THE EDGE.
Knowing that your child cannot (or won't) do such a basic and supposedly inherent thing and knowing that you, as his mother and primary caregiver, can't help him down that road... knowing that this takes him one step farther from "normal"... knowing that he is missing out on all kinds of normal childhood experiences and activities because he can't eat/be fed outside of our house... AAAGGGHHH!
Please pray. I'm so out of ideas, I don't even know what to do. And it doesn't seem like anyone knows what to do to help us. It's so very isolating. While my friends blog about going with their kids to the zoo and story time at the library and the swimming pool or even for a milkshake, I sit home and push green crap (really want to use stronger word here) through a tube, tethered to a high chair.
PISSES ME RIGHT OFF.