Debbie Downer Post. PF related

[dixienormous]

I just got PF's progress notes from her therapists. There are a lot of "little progress," "no progress," and "moderate progress." I can deal with the "moderate." She's had a decrease in oral eating since the g-tube placement, despite the fact that she only get's fed through the tube at night.

I'm also trying to find classes for her that her babysitter (I refuse to say I have a nanny, Muddled!) can take her to. We want to give her more time with other kids than just at school. Only it seems in her age range and younger is more morning. She's in school in the mornings.

I see her progress and I know it's there. It's just so little and so slow to come. It's really disheartening. I'm so frustrated and feeling beaten down.

[Deleted]

(hug) (hug2)

[margarita]

I'm sorry Dixie.

[motzie]

I'm so sorry Dixie. (((hugs))) The feeding tube is still pretty new, try not to get discouraged if progress is slower than you'd hoped. Things are moving in the right direction, yes?

There will be a class or activity out there that will work for you. Don't stress too much if you don't find it immediately. Make it a goal and I'm sure something will come up in the next few weeks or months.

[starrieskies]

I'm sorry you're feeling so frustrated, dixie. I can't imagine how hard this all must be for you. But progress, no matter how small, is progress and it doesn't always happen on our schedule (no matter how badly we want it to). Sometimes all you can do is keep moving forward and encouraging PF to do the same.

I'm sure it's frustrating, and you're so strong for doing everything you do! PF is so lucky to have you for a Mom!!

[partiallysunny]

I'm sorry, Dixie. This has to be so frustrating for you.

I hope you find some classes!

[Wrath0fKuus]

[cuddlyevil]

{{HUG}}

She'll get there, you're doing everything possible to get her there.

[Muddled]

This is a bummer. Don't let it stop you from achieving those goals, though. Little progress is still progress. How often do you get these reports? Did they have any useful suggestions?

Look at me, being all practical when you just need a hug.

I'm sorry. ((dixie))

[Deleted]

Slow progress is frustrating, but it IS progress.

Are you involved with any support groups? I know is sounds corny, but they really help!

[dixienormous]

We get reports every 3 months. We're in constant communication with the therapists. We try to incorporate their suggestions into daily life but it's not always easy, and if we don't do them we end up feeling like failures. And PF needs a break sometimes too. She's getting a LOT of therapy.

I just ordered a Radio Flyer push wagon for her to work with for walking. We've been walking (us supporting her under her arms) all over the apartment when we need to go somewhere.

We just want so badly for her to be able to do these things, and unfortunately, we don't know if she can. We can only keep on trying.

[dixienormous]

Mags, I haven't been able to find an infant brain injury group. In my area it is VERY Spectrum oriented. Social workers at the hospital haven't been able to help. For something as common as Cerebral Palsy (forget brain injury), there is little for severity like PF's.

[partiallysunny]

Don't feel bad about needing to take a break every once and awhile. It's good for both you and PF. ::hug::

You have a date with the mom who is in a similar situation soon, right?

[dixienormous]

May 16, 2013 14:29:10 GMT -5 partiallysunny said:

You have a date with the mom who is in a similar situation soon, right?

June 18th. Going to get a massage and then meet her for lunch. I can't wait. She's super encouraging and she knows what it's like to be in the first few years of diagnosis and Fucked Up Wonderland. I hope that when I finally hit full "acceptance" of the situation (rather than going back and forth through the grief stages) I can do it as gracefully as she has.

[imoan]

I love you! Have they SEEN her Golden Girls dancing?!

[captainmel]

You get to see PF's progress every day. Even it is small it counts! Sometimes if I am going through a stressful time I like to keep a small journal and write down those little processes each day. It can help to have a little reminder.