Update on our neighbor

Our good friend, Linda, passed away early this morning. She had taken a turn for the worse and did not ever receive her chemo treatment. Thank you all for your loving thoughts and prayers. Jessica is taking the news pretty hard. I'm sure we will be up late tonight as she tries to grasp what has happened. We are going to our local Tu Nidito support group meeting this evening so hopefully she will be able to talk to one of the trained volunteers or social workers there too.

Jessica is quite the author and artist

Most of you know that Jessica has invented her own story regarding Harry Potter. Mary Potter is Harry Potter's long lost twin sister. Mary is in the Slytherin house and is in love with Draco Malfoy. ooooooo..... Harry and Mary get a long really well and Mary and Draco get along, but there is still the rivalry between Harry and Draco. Very interesting...

Here is a picture that Jessica drew of Mary Potter's room at Slytherin.

Jessica's grocery list

This was just too cute! I just had to share Jessica's grocery list. I'm getting ready to run some errands and Jess wanted to make a grocery list for me. As you can see she also drew the pictures so I would know exactly what she wanter. hehe... unfortunately she drew the ice cream cone up-side-down. She's such a little girl.... she makes me smile.

You can see that she is trying out fancy hand writting.

Our New Patio - and gazebo!

I'm proud to present our new patio and gazebo! We used to have an old, wimpy gazebo that the wind would blow around. I wish I had taken a picture of it before Karl took it down... but it was a shady place for us to go sit under - although it didn't have a patio, just dirt. So Karl took down the old one and leveled out the ground. We bought paver stones and Karl went to work! Karl and I found a great deal on a gazebo and outdoor dining set so we bought them. Here are the during and after pictures. Again, I wish I had gotten the "before" picture... but oh well. We are THRILLED with our new outdoor living area!


The patio part is coming along...




Karl and Justen working hard

Our lovely new living area

Another school year... another migraine

So.... the school year begins and the fun starts... or not.

To start off with, Jessica's bus schedule is all messed up. She is supposed to have a pick-up time of 10:15am and come home at 1:30pm on Monday and Thursday. Last week there was a bus at our house at 7:10 every single morning. Come to find out the person in charge of the scheduling, George, died during the summer - not sure how and of course I'm sorry for the loss... but there's more to the story... Transportation got a new computer system during the summer so all of George's files, schedules, etc. are gone. Kaput.... as if George took everything with him. So now the new guy needs Jessica's emergency plan, copy of her DNR, schedule from the school (can't take my word for it) all before they can send a bus for her. Of course it needs to be air conditioned and wheelchair capable. Fun.

I called the medical supply company on Thursday of last week and requested that they deliver the usual oxygen supplies to Jessica's high school. Of course I told them the list (oxygen concentrator, two 25ft tubing, two sivel connectors, 3 humidifier jars, 3 pediatric nasal canula, 2 E tanks with a cart and regulator). I was told it would be delivered the next day. Monday comes around and I take Jess to school (see reference above about no bus) and come to find out... no oxygen either! I brought extra E tanks for Jess and make sure she had enough for the 3 hours. I picked up the paperwork for her meds and now I need to remember to fill them out and get it back to the nurse's office on Thursday. I was so busy running kids around yesterday that I didn't get a chance to call the medical supply company so I did that today. They couldn't tell me why it wasn't delivered on Friday - or Monday - or today... but promised it would all be there tomorrow. The guy I talked to in dispatch talked to me as if I were an idoit - started to describe to ME what an E-tank was... I told him I know what an E tank was... I wanted to know how many they were delivering and how many hum jars and peds nasal canula. ha. They had forgotten about the two 25ft tubing... Jess sure wouldn't get far on a 7ft nasal canula. gee... (she parks her wheelchair and walks around in the classroom).

Jessica's pediatrician is retiring so we recently had to get a new primary care doctor. Dr Curtiss has been Jessica's PCP for many years and we hate to see him go... of course he deserves to retire... anyone would after being Jessica's doctor for all these years. haha... Anyway, Dr. Curtiss helped us find an internist since Jess is now 18yrs old. We saw her a couple of weeks ago and she seems pretty good.... only when I left a note for her to write a script for morphine she wrote it for 2.5mls - 5mls twice daily... when it should have been 2.5mls - 5mls every 2 hours as needed... so we had to have it rewritten so the insurance company would cover the 600mls Jess needs every month. It's taken us from Fri until today to get it taken care of. Good thing I expected it to take awhile and I made sure we had plenty of morphine left when I requested the script.

Jessica's case manager called me today and told me that she is moving to Florida and we will get a new manager starting Monday. Oh, I really hate to see her leave... she has been one of the best case managers that Jessica has ever had... and considering we are talking about 18 years worth of them, we've seen quite a few come and go. Keep your fingers crossed that the new one is good too!

Also, PHS is trying to deny mental health coverage for Jess since she just turned 18 yrs old. Excuse me? We have an 18 yr old with all the hormones but the mental capabilities of an 8 yr old who knows that she is getting sicker. She knows she could die and she realizes that she is missing out on a lot of things the other kids her "age" are doing. I am up with her until 2:30 - 6:30 AM at least 3 times a week because she is stressed out and can't sleep... sometimes crying and even trying to hurt herself. They want to stop coverage NOW??? More phone calls and paperwork ahead of me. Speaking of hormones... Jessica's cycle is messed up so she has to go see a GYN in a couple of weeks... yet another new doctor, for new problems.

Speaking of doctors and new problems, (well, 'new' as in 'within the last year or so').... Jess sees the GI doctor again this Thursday. She is still having some pain but we seem to have it more under control than a couple of months ago. I think the key is to keep her bowels moving but not too fast. What's the magic potion? I think it's 1 1/2 of the usual dose of mirilax on most days. We'll see if that changes.

Still working on the Legal Guardianship issue. All I get is dead-ends or $$ when trying to find out how to go about this. Wish me luck! Or find me a lawyer who will work for free... or even scrapbooking supplies! ;)

Justen finally got the official diagnosis of Aspergers. That's a whole 'nother set of issues - but at least we finally know what is going on with him and hopefully we can find some support for it. We are just hoping he doesn't lose his job because he offends someone and doesn't even know it. OY! Oh yeah.... he dropped a course last semester and didn't tell me (or his dad) and now he doesn't qualify for a federal grant to pay for his schooling - not enough credit hours. We can't pay for it so he is just going to have to either go part-time or not at all. At least he has a job.. part-time at Frys grocery store.

Life has been BUSY

Wow, it's been awhile since I posted here... or anywhere, really. "Life has been very busy" would be an understatement. I can't believe school starts again on Tuesday. I have been taking kids school shopping, Jess to doctor's appointments, helping some dear friends of ours with a yard sale (see the other post regarding prayers being needed) and running around making CM deliveries and getting ready for a CM workshop which was last night. I really enjoy Creative Memories and was so excited - I had 11 customers come to the workshop! woo-hoo!!! We had a great time but of course hauling all my CM product to the workshop and back home that same night wears me out.

Add to my to-do list:
a) find a better way to organize my CM product so I am not taking a ton of product that I don't need to.
b) organize my new CM cart and tools tote so that's all I have to take for my own use at a workshop.

Creative Memories just has it's yearly Showcase and they came out with a lot of new product! I am excited about it all........ gotta have it! ;-) Hey, at least as CM consultant I can support my own habit.

Prayers for our friends

My neighbor's mother is struggling with cancer. It is throughout her lungs and brain. She probably doesn't have long to live and to help with the pain, she has gone through radiation. The doctors have said that she could try chemo in order to help with pain and other things but they have to come up with over $4000 before they can even start the chemo! This very sweet lady is on Medicare and that's her co-pay! Unbelievable! They just found out about the $4000 a few days ago so we have been helping them with a yard sale - all money raised will go towards paying for the chemo. I talked to one of the family members today and Linda had such a bad night, they had to admit her into a hospice unit to get the pain under control. They almost lost her last night. Please pray for Linda and her family. We've known Linda and her daughter, Trina, for quite a few years - they taught Jessica's Sunday School class a few years ago. Trina and her family moved in across the street from us a few months ago and it's been nice to have them so close. Jessica is having a hard time dealing with all of this too. She donated some things for the yard sale and was so happy when some of it sold today. Karl and I donated as much as we could come up with on the spur of the moment and the boys donated a huge amount of Imaginex toys. They will be having another yard sale next weekend so I'll be busy looking for more things to add to the cause.

Please keep Linda and her family in your thoughts and prayers. Trina is having a rough time of it - she said that her mom is her best friend.

Thanks!

Morbid???

Jessica has been talking about death a lot lately, which is ok, she goes through phases of talking about it.... but what is weird is that she apparently saw some show that went into detail about what happens to a body after it dies. I forgot which show it was but it's not really something I would normally let her watch. I dont know exactly when she saw it because I try to keep tabs on everything my kids watch... anyway, I can't do anything about that now, but what is even more weird is that she has fixated on that subject. She keeps talking about it and says things like, "I can't believe that after just a few years after you die, you lose your eyes and your ears..." and she will ask me why our bones don't go away. I explained that the soft parts dry up and go away. She was holding her bunny (Mary) last night and asked me if Mary's ears would go away because they are soft... and what about her nose? Will it go away too? Oh gee!

We are LDS (Mormons) and we believe in life after death. We believe we will someday be resurrected as Christ was and have perfect bodies ... so it doesn't really matter what happens to our bodies when we are in heaven, they will be perfect when we need them again. I've tried reminding her about our beliefs but for some reason she needs to talk this out. I tell ya, she has really come up with some interesting things to talk about but this takes the cake! She has the mind of a young child and she has to process anything new by talking about it - a lot.

For Crying Out Loud

Literally.... Poor Jess got so offended by something someone said that she was crying buckets of tears tonight. She even started that type of crying where she was doing the "catch-up" breathing... dont know how else to put it. She started coughing from the crying and it started sounding like the kind of cough she does when she coughs up blood..... fortunately no blood tonight, *whew*. Karl and I took turns sitting with her and helping her calm down. She takes everything to heart.

The person who offended her has no idea that he/she said anything wrong. This person doesn't realize how sensitive Jess is and how much she truly is a little girl. Hopefully we can get things straightened out tomorrow. I know this person had no intentions of hurting Jessica's feelings, I think they just got foot-in-mouth syndrome.

It's about 1:40am and I just got Miss Jess back into bed. Hopefully she will be able to sleep now. She has her favorite two barbies in her bed and is watching Barbie as the Princess and the Pauper. She really is a little, innocent girl.