Jessica's PC visit (that would be Pediatric Cardiologist - not personal computer)

In my last post I mentioned that Karl took Jess and I to see the PC (pediatric cardiologist). It was quite a good visit. Jess was happy to see Dr. Donnerstein again as well as the other staff. Jess had an echocardiogram and did quite well with it. Afterwards we visited with Dr. Donnerstein in his office. He says that she is improving. Last time he saw her, her liver was a little enlarged... now it's about normal. Her hepatic veins had looked a bit engorged the last visit but have improved. Her feet and legs are only slightly puffy but nothing to worry about. She is doing quite well and her congestive heart failure is in control! YAY! In fact, he said that she seems to look better and better every time he sees her. I said, "except for that one time you slapped her into the hospital in June." He joked, "That was only to be mean." Of course Jess teasingly got after him about that. Dr. Donnerstein said that she seems to be improving ... and there's no medical reason for it. He recalled that just two years ago she didn't have enough energy to even get out of her wheelchair to get onto the exam table. That was when Jess was having hemoptysis (coughing up blood) practically daily. There is no proof that the morphine therapy is what is preventing the lung bleeds... but there's no other medical explanation... and I'm not complaining! We are continuing the morphine and just keep doing what we have been doing! Of course all the prayers from all of you just happen to coincide with her improvement... *smile*

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

The old upright piano. As you can see it's not very pretty. I should have thought to take a picture of the keys... they were kind of icky too.

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!

Happy Birthday to ME! :)

I had a great birthday yesterday. Yes, I had to do a bunch of "mom" stuff but I did get to go out to dinner with my hubby. The restaurant gave me a free piece of pie, too. ;)

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.

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!

Our friends Zurik and Zoe

This is our little buddy Zurik. Isn't he a sweetheart?



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.

A sweet memory

I took Brandon and Austin to Walmart this evening to buy them some t-shirts. On the way home the boys were making up silly rhymes. All of a sudden I had a memory of myself as a young girl and my family was visiting my dad's Aunt Ada and Uncle Melvin. I was just learning to write simple words at that time and I had written a little poem and showed it to Aunt Ada. I remember her praising it and telling me I was quite the poet and what a good writer I was. I remember how good she made me feel. Looking back I know the poem was such a simple one but I had taken quite a bit of time to write it. The last time I saw Uncle Melvin and Aunt Ada was when Jessica was just about to turn 3 yrs old and was awaiting her second heart surgery (which turned out to be very difficult as Jess suffered many complications). I have a video of her signing and talking and calling Aunt Ada: Aunt Wada. Justen was 5yrs old and he was counting all the way up to 100... he got mixed up about half way through and had to start all over again! LOL! Aunt Ada died quite a few years ago and Uncle Melvin died about a year or so ago. They were such special people and I am glad I had such a sweet memory come back to me. I also remember being very young and calling Aunt Ada "grandma". She would say, "I'm not your grandma, but you can call me grandma.... afterall, I do look like your grandma." And she did. To me,she looked like my Mom's mom, Grandma Horne. Short, kind face and white hair.

A long awaited update... well, not quite sure how many of you have waited, nor how long you waited, but here it is:

I have been accused of having too much time on my hands so I figured I should update - since I have nothing else to do. ;-P

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! :-)

Creative Memories swaps

Here is a picture of some CM swaps. It is for a yahoo group called CMOnly Swaps. For this group I had to make 8 of each doll using the Sizzix dies and CM paper. These were a lot of work but so much fun! Now remember, there are 8 of each doll. When I send them in, I will get one of my own back and 7 different ones that other people have made. I can't wait to send them in and see what I get back! This is my first swap ever!



And I blame Samantha for getting me involved in swapping. LOL!