Tag Archives: Fun Times

We finally landed……

Much has happened since I blogged last. We did finally land and got moved into a new apartment. Of course we had to spend 3 weeks down in southern CA waiting for the apartment to be ready.

 

We were able to make a trip to Disneyland (a very generous graduation gift to my older daughter, from a very dear friend). Was an awesome trip. PA was in heaven and LOVED all the rides. Her favorite was Star Tours & Space Mountain surprisingly enough. We were able to spend some much-needed family time together. My husband did make me sit in a wheel chair to get around though. I was not feeling well.

 

Turned out a few days after that I went back into the hospital. I could not eat and was in horrible pain. I ended up having a tumor taken out of my bile duct & had several stints put in. Apparently my bile duct was completely blocked with scar tissue and the tumor. Then the next week I recovered before we finally were supposes to come home.

 

The morning we were supposed to leave my husband went down the stairs (was 2am and dark) and slipped down the bottom 3 or 4 steps. Instead of leaving we got to take another trip to the ER. Only this time was to see if he broke his elbow. Turned out was not broken but badly sprained. He also hurt his back again and is going in this next week for an MRI to see what damage he might have done to his back. He had 2 back surgeries a little over 10 years ago.

 

We were able to make the trip back the next day. Of course it was raining, but with the help of my in laws and my older daughters boyfriend & his brother we were able to get it done.

 

It has been a rough month. All of us have had to make adjustments living in a smaller place. Poor PA has had it the worst. She is still not sleeping and is really making life hard some days for me. I am hopeful she will settle down soon.

 

Now a month later, we are a little more settled. This next week I will get PA registered at her new school. I also have more testing in nuclear medicine coming up (an octriotide scan). Then I also have appointments with specialists. I also have another surgery the last week of Aug. It will be a busy month. I hope to update a little bit more often.

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Cheese and Lettuce Delight

Tonight PA decided she was going to cook. I heard her in the kitchen making all sorts of racket. I called after her and asked her what she was doing & she said “I making Cheese  Lettuce Delight momma.”

So I went to see what she was up to because there was a lot of noise in the kitchen and this usually is not a good thing. Sure enough she had the lettuce and cheese out. She asked me for a plate, so I got one for her. Then I went to grab my camera, because this is always something to document.

The following is in her words (as far as the explanation under the photos).

“First put lettuce on plate”

“Then cheese on it”

“Have to put in bowl cause it messy”

“Stir it up”

“Now eat it mom. I make for you”

Of course she made it for me, after all it is green and she would never eat anything on purpose that was green. Not only because of the color but because of the texture. I have to give her credit. She did do a really good job. She also did a good job telling me what she was doing. I guess sort of a lesson in being able to explain something in steps. Something that is rather difficult for a child with ASD (autism spectrum disorder ).

Importance of Journaling in my life

I have always been passionate about journaling. It was a big part of my upbringing and important to my parents. I remember as a kid being told every Sunday we had to sit down and write in our journals. My sisters and I were all given our first journals when we were 5 years old. Every Sunday we would all sit down and write something.  I remember not being thrilled about this and actually, I dreaded it for a long time. I never knew what to write and I would just sit there. Usually I wrote simple explanations about my day. It was always just once a week, but it was something my parents insisted on us doing.

After a few years I did not dread it as much. Both of my parents kept journals. I remember a row of journals in the bookshelf that were my parents. I also remember the journal was sacred. No one read anyone’s journals with out permission & was never an issue.

I did not realize it but my parents were instilling a very important skill in me. Not only did it chronicle my life. Also taught me about what and how I was thinking. Also taught me how to deal with my feelings and work through problems. I have had countless journals throughout my life. My very first one was a red hardbound journal with my name in gold lettering.

As I got older, I got better about journaling. For years I kept a journal and was very good about writing in it almost daily. I stopped journaling off and on over the years. Now looking back life was less stressful when I was journaling, because I talked things out in my journal. I used it like therapy so to speak.

When I have stopped journaling, it has always been because I am going through a rough time. Or it is because I am not ready to process something that had happened. I kept a journal through my original cancer diagnosis & subsequent surgeries. However after I had my youngest daughter and then told me my cancer was incurable I stopped writing. I think I stopped writing, because I had not totally accepted the fact I was not going to get better.

Almost a year ago I started writing this blog. This has been a journal of sorts for me. I do need to get back to actually writing a journal, because I tend to write more personal things on paper. I think I will make this a goal and work on it.

Some of my favorite Christmas decorations..

I had many ideas for a Christmas post, but my favorite part of Christmas besides baking is the decorations. So I thought I would post pictures of my favorite decorations.
Marry Christmas/ Happy Holidays

Swinging Cinderella (Wordless Wednesday)

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 🙂

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.

Our Favorite Spot in Monterey, CA

This was taken in Monterey at our favorite park when Shann was 5 I think…..I took the picture…Shann was running in the park…