A Day with PA in Pictures and A Few Words

I thought I would do something a little bit different. This is a typical day with PA. Not everything we do together, she does lots with her dad and sister. We try to do things to help with her various developmental needs. We do things a little different from many families with special needs kids, but this works for us right now.
I just thought you would like to see a day with PA my way….In pictures..Enjoy ๐Ÿ™‚

This is what I see when I can focus my eyes in the morning.

Then I go check to see what PA has put on her “doll” the Buda.

Before I even wake PA up I need my one vice my Diet Coke.

Mornings are never good for PA so I skipped the getting ready part & went directly for “Ready For School”

On our way out to wait for the bus we walk through the garden to see if there is anything we need to pick.

This starts my time. I usually have lots to do and almost NO time to do it. I am a frazzled mom. I start lots of projects and almost never complete them. I also do try to do housework during this time. Some days I even get to go out and do errands.

Then PA gets home & it is snack time. She has a very narrow range of foods she will eat and this is about it.

We do crafts. Play dough is her favorite. We also do painting and coloring.

We also work on self-help skills. PA is just now getting to where she will put on socks and shoes. She thought her dads black dress socks would go with her Sunday shoes. Backwards no less. I had to take a picture because it was number 1 an accomplishment for her and number 2 is was so darn cute!

This is what we call “going shopping”. This is how PA will get her food. We have had to make it fun for her and interesting. I picked up this shopping cart last year when we were having issues getting her to eat and it has done the trick. We still have many days a week where she will not eat, but she is doing better.

It’s play time till bed.

Story time before bed.

Then while she gets her story we also do her medicine. We also do this in the morning too. Also includes her nebulizer treatments morning and night as well.

Before bed we also set our clothes out and get her backpack “packpack” as she calls it.

PA Sleeps for a few hours then she is up again. She gets up 2-3 times a night to have her drink, because she won’t eat the right or enough food in one day.

This makes for long days for me. I don’t sleep well and have not since she was born.


2 responses to “A Day with PA in Pictures and A Few Words

  1. Great pics! ๐Ÿ™‚ I feel for you with the sleep, I think after a while you just chug along and don’t think about it much it just becomes routine. my son used to wake up 5-6 times a night since he was 3 months old. If we got 3 hours a night of sleep it was a day of celebration!! he is 6 now and is a ‘tad’ bit better i just self taught him cold turkey one night with alot of repeitive explaining the entire day, that at 6pm was his last milk (almond milk and water was all he drinks) and that if he woke up at night all he would get is water) no food no milk, over and over i would say this. so eventually he didn’t wake AS MUCH. so now we are down to waking up at like 2x and its more like for seizures, or peeing bed, or bad dreams. good luck i hope you sleep soon xoxoxo

  2. PA is so beautiful. Look at that little angel face! I’ve missed you my friend. What a lovely idea for a post. The shoes are great! Love them with the socks – she’s a trend setter.

    I totally recognize the white and purple box for the nebulizer! T takes the same medication – 2x a day. We are just (2 days in) starting a powder like inhaler. How many minutes a treatment do you go? I usually do 12 minutes and it is a hassle in the morning before school!!

    We both need to work on the food issues! It’s so hard. And girl, you need some sleep!! I wish there was something I could say to help you with that one. It makes all the difference in the world. Thanks for all your support during the trial! Just glad it’s over!!! xoxo