This is a place where I can post family updates and ramble about things as I try to find my way since the recent death of my daughter. Life has completely changed for my sons, my husband and myself. Our faith has been a great source of comfort and we'll continue to rely on it as we press forward.
The Story of Christmas & Silly Socks
Monday, September 25, 2006
Jessica's PC visit (that would be Pediatric Cardiologist - not personal computer)
I brought up something that I have been a bit worried about. From time to time Jess says that she sees "black and white" or "old-fashioned" colors in one eye only. I thought it was only her left eye but she said that it changes sides. Sometimes she has a headache and sometimes she doesn't. Dr. Donnerstein suggested that we see a neurologist. It could either be migraines or TIAs Transient Ischemic Attacks... tiny bloodclots that go through the blood vessels in the brain. They don't leave a lasting effect but can cause symptoms during the time they are happening. The problem is, in order to treat TIAs, they usually have to give the patient blood thinners. Jess has the lung bleed issues so she wouldn't be able to receive treatment - IF that's what the problem is. On the other hand, she might be able to receive treatment for migraines. I looked up TIAs and they are scary! They can be a warning that a stroke could be next. Please pray that whatever is happening with Jess is treatable. Poor kid goes through so much already.
One more thing... Jess has to go see a GYN this Tuesday - she's having "female" problems. She has never been to this type of doctor and I'm hoping she deals with it ok. Also, I talked to the GYN on the phone (she sounds very concerned and compassionate about Jessica's situation) and she said that after the exam we may want to talk about hormonal treatments... I mentioned this to the PC as well and he said he would be nervous about Jess taking any hormones but would be happy to talk to the other doctor any time. Apparently certain hormones can contribute to thickening of the blood and Jessica's blood is already too thick due to lack of oxygen - but that hasn't stopped her from having bleeding issues. UGH! Wish us luck!
Updates: Piano & Gazebo

Now the NEW Piano! Very purdy.... And it sounds great too! This piano was made in 1956 and is a Baldwin Acrosonic spinet piano. Most spinet pianos are not only shorter than regular ones but the keys (on the inside of the cabinent) are usually cut a bit short in order to give the illusion of being compact. The problem with cutting the keys short is that it takes away from the sound. My Acrosonic spinet does not have shortened keys and it sounds quite good. It sounds more like a taller piano - which would have cost more. So we are quite happy with our new "baby".


Miss Jess wanted her picture taken sitting at the piano and holding my Beethoven book. She really wants to learn to play so I am in the process of finding a teacher for her. I already gave her one short lesson and she was so happy to be able to show her grandparents where all the "C"'s are. Of course she needed my help since her memory is not that great. (lack of oxygen and all...) piano lessons could prove to be quite interesting... especially since her fingers are quite clubbed (again, due to lack of oxygen). But you know Jess! Where there's a will there's a way! :)



Remember my new gazebo? Well, it is now the Oasis I have always dreamed of! Karl and I have been looking for the "perfect" fountain to add to our gazebo. We have been out pricing them and just when we thought we had found the right one, we found that it was cheaply built and quite pricey. Nope. Not gonna fall for that. So we kept looking. Last week Karl dropped Jess and I off at the PC appointment (that's pediatric cardiologist- not personal computer)and he (Karl - not the PC) went out looking at some more fountains. Since Jess is a young lady and needed an echocardiogram, daddy decided to go out and ended up buying a fountain! Target just happened to have put the one fountain that we liked on clearance - $75 off!

Here are some night views. Karl put up the lights. Very nice!

Friday, September 22, 2006
Happy Birthday to ME! :)
Karl has been asking me what he could get for me for my birthday and after investigating everything.... we went and bought a PIANO!! ;) It will be here tomorrow so I will have to post a picture of it then. I used to play the piano every day... back in the good 'ol days. I took piano lessons for many years while growing up then life kind of got in the way. My dad bought an old upright piano for me before Jessica was born and I intended to teach piano lessons to help us out financially but after Jess came along and we "lived" in the hospital and barely managed to get through one crisis after another, the idea of teaching piano lessons fell by the wayside. With Karl being a full-time student and all we were going through we kept saying that eventually we would spend the time and money to refurbish the old piano. The keys are real ivory and breaking, many keys stick, the sound is pretty bad, etc, so it didn't get played much... then not at all. I forgot to mention that the lady we bought our piano from had refinished it back in the '50s and put an "antique" finish on it. LOL... it's quite ugly.. and has been our TV stand for the last several years. lol. I'll have to post a picture of our old piano and then our new piano after the new one arrives. :)
Thank you everyone for the birthday wishes! I have to say that this birthday was much better than two years ago when I turned the BIG FOUR-OH! Jess had just been admitted into hospice, she was having lung bleeds almost daily and for my 40th birthday we bought me a recliner to have in Jessica's bedroom so I could be in there day and night while she was dying. And she was dying.
How amazing that Jessica is doing so much better and that she has been OUT of hospice for a year now. A miracle. Nothing less.
Tuesday, September 19, 2006
Today be Pirate Day! Yaaarrrr!!!!

For those o' you that don't know, today be "Talk like a pirate day!" So get your Captain hats out, swab t' decks and walk t' plank me hearties!
And in true pirate fashion, I done stole yar post from Jo.
Today also be me sister, Karen's birthday! Have a good day sis!
Sunday, September 17, 2006
Our friends Zurik and Zoe

Zurik was admitted to the hospital recently and was diagnosed with Type 1 juvenile diabetes. He was pretty sick but is doing much better! We are so glad that he is back to his normal giggly self. He is almost 2 yrs old. His mom, Tammy, says that he is dealing with the blood checks and insulin shots VERY WELL! What a trooper!
Zurik is the 2nd child of Tammy and Jaime. We met this family at our local heart support group, Heartlight, when Zoe was just a baby. This is Zoe:
Zoe was born with many complex heart and other defects. She is my hero. She went through so many surgeries, procedures and therapies. I remember watching her learn to walk. She had a toddler size walker and she was soooooo determined to go where ever she wanted to. Jessica and I would frequently hang out with Zoe and her wonderful family at the Heartlight events while the other kids ran around and played. Jessica and Zoe had so much in common - heart problems, multiple surgeries, strokes and most of all the love of life and determination to do whatever it was that they wanted to do!
Zoe earned her wings on Sep 5, 2004... just 10 weeks before Zurik was born. She will forever be in our hearts. She touched our lives in so many ways - as has her family.
Friday, September 15, 2006
A sweet memory
Thursday, September 14, 2006
A long awaited update... well, not quite sure how many of you have waited, nor how long you waited, but here it is:
Let's see.... after getting to bed at a mere 4:00am this morning, I was up again at 8:00 to call and cancel an appointment for Jessica. That's right, she had a bad night - yet again. I was able to go back to bed for awhile. Poor Miss Jess was coughing more today and needed an extra breathing treatment. She was quite tired most of the day but perked up in the evening. It's 12:20 am and she just got up. She really wants to go to school tomorrow but I seriously doubt it will happen. If she can get up and wants to go, then by all means, I will help her go, but she wasn't feeling that great today. School started on August 15th and she has only been to school twice.
Today I found papers for Jessica to sign to give me the legal medical power of attorney. We need to find two witnesses who are not in any way related to us or to Jessica's doctor, or an employer of her doctor or could in any way benefit financially from her "estate". lol... I don't see people lining up at our door wanting her barbies, coloring books and video games.... well, maybe the video games. :-P We also need to have the documents notorized. I need to get this done ASAP so that I can file an appeal concerning PHS denying to continue to provide mental health care for Jess. Maybe they will provide MY mental health when I'm in a padded cell from having to deal with all this stuff? Anyway, I still don't know how to go about getting legal guardianship without spending thousands of dollars, so I guess the medical power of attorney is better than having nothing at all. I need to call SSI and find out if they will require us to have guardianship before we help Jess apply for it. I doubt it but I think it would be better that way. Hey, I just had a lightbulb momment... maybe Jess can get on SSI then her earnings can pay for the lawyer to help us get guardianship? Is that legal? *gulp* Having her parents as her guardians is in her best interest since she doesn't understand more than an 8 year old would.... about anything. Well, I'm sure we'll figure it out somehow...On a lighter note, Karl finished cleaning out the store room off the carport. YAY! Now I can move all my junk - erm.... stuff - out of the house and have a more organized home. That's the plan anyway.... I did whittle down a huge stack of stuff off of my painting table. I used to paint baskets as a job and I have a table in the corner of the livingroom where I have all my paints, brushes, books and an area to paint. Well, I stopped painting 2 years ago when Jess went into hospice and that area has just gotten all kinds of stuff piled on there. I will be glad to get that area all cleaned up and maybe even paint a little again. This time for FUN! On the left are some pictures of baskets that I painted. Mary Friedrichs and her daughter, Misty, hand-weave the baskets and take them all over the SouthWest to shows to sell. Mary would pay me to do the painting. I really enjoyed it but after a few years it wasn't as much fun to paint... it became a "job" and I got a bit burned out. When Jess was placed into hospice I just knew that my time had come to retire from the basket painting business with Jess needing so much of my time and attention. (She still does - it's now 1:33am and I just put Jess back to bed for the 3rd time.)
I also painted some birdhouses and other fun stuff. Karl has made a lot of things out of wood for me to paint including the bench that I have pictured here and of course I painted the pansies on it. I have been so busy running my scrapbooking business and making my own albums that I haven't paid much attention to painting. I am starting to miss it.
Next week is my birthday and I have people guessing how old I will be. It doesn't really matter to me since I FEEL like I should be in my 60's (arthritis, fibromyalgia and crankiness catching up to me - especially with such little sleep at night). So if you want, feel free to guess my age. And yes, I expect a lot of nasty guesses especially from Dan. :-P But here's my logic: Dan's birthday (and he will be an oooooooooold 30) is on Sep 17. My birthday is on Sep 20... so Dan is 3 days older than me. So neener neener.
My sister, Karen, will be almost as old as me on Sep 19th. hehe... Happy birthday sis! Wish we lived closser so we could celebrate our birthdays together like we used to! :-)





Monday, September 04, 2006
Creative Memories swaps

And I blame Samantha for getting me involved in swapping. LOL!
Monday, August 28, 2006
Update on our neighbor
Jessica is quite the author and artist
Here is a picture that Jessica drew of Mary Potter's room at Slytherin.

Friday, August 25, 2006
Jessica's grocery list

You can see that she is trying out fancy hand writting.
Our New Patio - and gazebo!


The patio part is coming along...


Karl and Justen working hard


Our lovely new living area

Wednesday, August 23, 2006
Another school year... another migraine
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.
Saturday, August 12, 2006
Life has been BUSY
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
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!
Sunday, August 06, 2006
Morbid???
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.
Friday, August 04, 2006
For Crying Out Loud
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.
Saturday, July 29, 2006
One of my recent scrapbooking projects





My new addiction
Here we go again
I hate monsoons......