Unanswerable question

[waverly]

Just looking for encouragement. The PT is recommending OT. The pedi should have no problem signing off and the school OT didn't seem interested in treating him since he is functional educationally, so it'll have to be private. I'll probably stack them after we finish PT. So more appointments. My unanswerable question is will we ever get a break?

Pregnancy was a shitshow medically speaking. Then he had hernia surgery and bronchiolitis as a baby and 5 million ENT and audiology appointments. Then maybe a one year break and then tubes then heart surgery, adenoids tonsils and tubes surgery. Then 10 million ear infections, hearing aids and ENT appointments and then looking at 6 months of PT/ OT combo.

Sometimes it's so tiring. It's like every time we turn around it's something else. How do you cope with the appointment fatigue?

And I know many here have waaaay more appointments than us. And there is no explanation why he needs OT just that he does. I mean I understand what she is saying but there is no diagnosis.

[macchiatto]

I'm sorry. My little guy has been in and out of several different therapies over the years and since he's re-increased lately (after a break that was all about being on long waiting lists rather than not needing therapy) it's definitely hitting us again. Hugs. It is tiring!

[lemonberry]

Hugs and sorry you're having to navigate that. I always tell DH that maybe in 10 years we'll get a break, but I think it's more like we'll just be even more use to the way things are.

[mamaturtle]

lemonberry , I use to tell DH when DS was a baby that I will never be able to sleep in until DS turns 10. I will be extremely tired by then.

[mamaturtle]

Hugs waverly,

Was this a school PT or private PT?

Maybe if you get the private OT eval you can show it to the school district or school OT to implement services and get on the ball with a request in writing.

I only feel the never ending therapies during the summer when there is no school. ABA therapy is much easier because they come to your home but I sometimes want to wear my pajamas once I get home from work or watch mindless kids' show on Netflix with DS.

I dream of days when we don't need therapies for DS and DS masters all skills.

[waverly]

Oct 13, 2017 9:42:57 GMT -5 mamaturtle said:

Hugs waverly,

Was this a school PT or private PT?

Maybe if you get the private OT eval you can show it to the school district or school OT to implement services and get on the ball with a request in writing.

I only feel the never ending therapies during the summer when there is no school. ABA therapy is much easier because they come to your home but I sometimes want to wear my pajamas once I get home from work or watch mindless kids' show on Netflix with DS.

I dream of days when we don't need therapies for DS and DS masters all skills.

Private PT. I will do it, but right now I just don't even feel like doing the whole ask doctor for OT eval, get on waiting list, have eval which always tends to be a downer like they tell me things I don't want to hear or try to talk themselves out of therapy or something. Then we get on the same page after the eval when they realize I actually know what I am talking about and then endless appointments. I can tell PT lady wants me to get in the ball with it, but I am finding PT to be tiring enough since it is like 20 min a day of exercises in top of work and cooking for kids and drop off and pick ups and DD being jealous of her brother and demanding to do the exercises too while DH is out of town traveling for work.

But she says there is a waiting list so I know I need to get in it. As far as the school doing it maybe... They didn't really seem to be interested in providing the service since he is fine academically, so we shall see. Thanks for the idea. I did find it easy when I had private speech eval and they just used that rather than doing their own eval.

[cam]

Hugs! I completely understand the burnout of appointments coupled with all the "homework" (therapy homework such as exercises and activities) in between. Even when it feels like you shouldn't take time for downtime, sometimes you just need to and is worth the little hassle it causes by pushing off doing dishes or whatever else you otherwise would have been doing. It is okay to do that now and then.

[k3am]

I could have written this post exactly, but spread the trouble out over two kids.

We got DD's epilepsy diagnosis when she was 1.5. That was monthly appointments, multiple hospital stays, multiple sedations for MRI's, pet scans and CT scans. A brain tumor diagnosis, surgery, more sedations and imaging, a second brain tumor, a second surgery. Which will be followed by.. more imaging, and potentially more tumors and more surgery, since there's ~20% recurrence rate and it's already noted that hers came back after her first supposedly curative resection.

Now we've got DS who hasn't been serious but had his adenoids out in August and has now been referred for an MRI because of his big head. Which probably wouldn't be recommended if it weren't for DD's history, so that makes me extra worried.

I'm just blah about everything lately.

[waverly]

Hugs k3am- sometimes it's just too much. And so many appointments.

At least H is only traveling one night this week.