Happy Birthday Justen

Today is my oldest son's birthday. Justen was born 21 years ago. My first questions is, how the heck did he get so old??? I have stayed the same age! ( hehe... I wish!) But seriously, he is a man now. A MAN! Karl and I were teasing him that he was old enough to buy a gun and go to a bar. Austin (who is 11yrs old) suggested that he shoot the beer cans since we don't drink alcohol. Justen just looked at us like we were crazy. He has no interest in drinking (or buying a gun for that matter.)

The following are some pictures of him through the years. Sometimes it seems like just yesterday that he was my little baby and other times it seems like a lifetime ago.

This a the smile that Karl and I called his "grandpa grin". Doesn't he look like an old man who took out his dentures? hehe.. TOO CUTE!Can you believe that we used to be a young family? Justen liked to have his hair spiked when he was that age. I guess he wanted to look like his daddy. We were visiting the Jensen grandparents home in this picture.

This is Justen's 1st grade picture. He really enjoyed 1st grade. He still says that his 1st Grade teacher, Mr. Steele, was one of the best teachers he's ever had. Mr. Steele says that Justen was so refreshing to have in his class. He was uninhibited and would laugh out loud at anything that tickled his funny bone. We were lucky that both of our other sons were able to have Mr. Steele as their 1st grade teacher too.

This picture was taken several years later - I don't have a picture in between these two that I have scanned onto the computer - tons printed, just not scanned. Anyway, this is a nice picture of all 4 kids. Justen, Brandon (in back), Jessica and Austin (in front)

This picture was taken in 2004. It's been harder to get pictures of Justen since he became so busy with school, work and other activities but I got one! Here he is reading.

This is a picture of Justen after I shaved his head in honor of his cousin, Marcus, who has a brain tumor. It only looks like Justen has longer hair because his hair is so thick! lol! It was nice of him to honor his cousin in that way.
Justen is working at FRY's food and drug store. He was going to school but decided to take a break for now. He is also fulfilling a service mission. Every Wednesday early morning he goes to help out at the church cannery. He is also taking a class at our church Institute. He is serving as counselor in the Sunday School in the Institute Ward he attends. I couldn't be more proud of my oldest son and of course I couldn't love him more.

Happy Birthday Son.

Update on my Nephew, Marcus

We got some good news today! If you'll remember, the last MRI showed an area of cancer growth right where the tumor was removed.

Here is what my sister wrote on Marcus's carepage (http://www.carepages.com name: MarcusRussell - no spaces)

GOOD NEWS! GOOD NEWS! We just got back from the Dr. visit and everything looks great. Marcus had an MRI and the "protrusion" that was there has shrunk! It looks so much better and everyone is very happy with the results. That means that Marcus will start his maintenance chemo tonight as scheduled. He will be taking 140 mg of CCNU (a chemo) for one day and 255 mg of Temozolomide (temodar) a day for 5 days. He will also be taking keflex (an antibiotic), zofran (for his nausea) and megese (for his appetite). The next few days won't be a lot of fun, but its short-term and its WORKING!
Marcus is still doing drumline and enjoying every minute of it. He had his first performance last Saturday and did really well. Its so great to see him doing what he loves. His grades are up and he is working hard at his schoolwork.
Last Saturday he was given tickets for the Utah State Aggies men's basketball game, in addition, he was given a floor pass as well. He went an hour early and met the team, had a tour of the locker-room, and shot-around with them as they warmed up for the game. They gave him and his Dad each T-shirts that aren't sold anywhere and gave Marcus a game ball with signatures of the whole team plus "well wishes Marcus" written on it. He was able to sit right behind the bench during the game with his Dad while the rest of us had seats a few rows back. It was a great time. I am sure it is something he will never forget. Thanks to the Beckerts (our fellow desert-rats) for setting it all up for us.
We are so Happy with the results of his MRI and feel so blessed that everything is going so well. Thanks for all the good wishes and prayers, without them, I don't know where we would be.

Karen

If you would like to read more about Marcus, feel free to visit his carepage or click on his name under the "labels" in the sidebar to the left of this blog. He is an amazing young man and I'm proud to be his aunt. His parents and brothers are awesome too. I, too, and thankful for all your prayers. They are really helping.

Friends or Foe?

I read this post: My friends, my enemies tonight. "I stumbled" onto this message while reading a blog that I frequent. I followed a link from one blog onto another, then onto another, so on and so forth until I ended up reading what the author wrote especially for me. (ok, I'm not that conceited but I really do feel that God led me to it)

The author talks about her two so-called friends called Self-Doubt and Jealousy. Towards the end she says, "At least I see beyond their straight teeth and glossy hair and recognize these two for what they are. Jealousy and Self-Doubt are poison, the kind of poison that looks pretty and tastes sweet, but which will burn my tongue like hot sauce and sear my soul like a toxic acid." She also said: "With friends like these, who needs Satan?"

WOW. This is exactly what I needed tonight. This week has been a difficult one and I had more problems today dealing with a rude person who works at our pharmacy. As I was talking to him on the phone, trying to explain that Jessica has two insurance companies and the 2nd one pays the copay for the first he kept cutting me off and wouldn't listen. He raised his voice at me and I started shaking. I told him to LISTEN and tried again to explain how he needed to go about fixing the problem but he kept cutting me off and insisted that I have to contact the insurance company myself next week. I told him that I wanted to talk to a supervisor. He was upset and either hung up on me or accidentally lost the connection. I decided that I would get dressed (I was still in my jammies and robe having been up with a very emotional daughter until 4am) and that I would go down to the pharmacy and talk to a supervisor in person. As I went into my bedroom I was getting more and more upset. I decided to get down on my knees and pray. I haven't been doing that very often lately. I needed strength and I needed peace. Karl came back to check on me. I had started to calm down but when Karl came in and asked if I was ok I burst into tears. "I am so tired of the whole world ganging up on us!" I cried. All I want to do is take care of my sick child. (I wrote a long post a few days ago, I think I'm broken, telling of how the nursing agency and Jessica's case manager seem to be trying to accuse us of misusing their services. Now how am I supposed to contact the case manager and have her help us fix the problem with her insurance company not paying the copay? We have had so many stupid things go wrong lately that it's getting overwhelming.) Karl and I talked and after a bit we prayed together. I felt much more calm and decided that I would shower and get ready to run some other errands before heading to the pharmacy.

As I was putting my things into my SUV I saw my next-door neighbor's nephew outside. My neighbor is struggling with colon cancer and is not doing very well. I asked the nephew if his aunt was awake and he said yes, go on in. So I went in and visited with her. This sweet lady is so sick .... but is still trying to have a good attitude. We talked for a little while and I asked her if there was anything I could get for her since I was going to the store. She actually said yes! I was so happy that she would allow me to do something for her. She wanted some carnation instant breakfast and ice cream. She needs some calories and hopefully she can keep this down. As I was about to leave her home Jessica called me. I was going to return her i-dog that she got for Christmas and is now broken and she wanted to see if I had exchanged it yet. She didn't know I was next-door. lol She chattered on asking me to tell our neighbor to feel better and never give up! And how she was going to draw a picture for her to help her feel better. Just hearing her voice made our neighbor and I smile. Such innocence and love!

I decided not to go to the pharmacy today. I don't need the aggravation. I will deal with them on Monday and I still plan on filing a complaint about that particular staff member - he's been rude to us before. So I went on my merry way to find an i-dog or something even better - turns out that store has been sold out of i-dogs for quite some time and I was able to get a refund and go to a store in the same strip mall and buy Miss Jess two - yes TWO video games for the price of the refund. I was also able to pick up the items for my neighbor and take them to her.

Tonight as I was getting Jessica ready for bed she was quite tired and started getting cranky. Oh no, I thought, I just can't deal with another night like last night. It took every ounce of my energy the night before to keep myself under control and help her calm down just to have her start crying over something else. Why do I have to keep going through this I wondered. Why can't I have a normal life? Why can't I have a full night's sleep and not worry that my daughter is going to get up needing my help with something? Why can't I have a life where I can pack up my kids and travel "home" to visit? Why can't I be like my family and friends who can take nice vacations with their kids or even go on field trips and not worry that their kid might start coughing up blood, get too blue to breathe or be in incredible pain? I started getting down on myself that I can't even keep my house clean and I'm home almost all the time! I was able to get Jess to bed and came to relax at the computer. I have some pretty great friends online and it helps cheer me up to be able to communicate with other moms - even if they live far away and our main means of communications is typing to each other.

Then I found the message about Self-Doubt and Jealously. I didn't even realize until I read that message that I have been entertaining those gals at my house. In fact, I even invited their sister, Self-Pity. These gals have been living it up in my home and have even invaded my daughter's room. How did they sneak in? Who opened the door? I guess that doesn't matter as much as how am I going to get rid of them. I will not ask them politely - I will just throw them out. Every time one of them sneaks in and whispers something into my ear I will tell her to go away. I don't need them. I have Self-Confidence, Gratitude and Faith to take their places. I have the ability to count my many blessings and remember the many miracles that I have blessed with. I have seen miracles and I can teach my daughter as well as my sons how to use Self-Confidence, Gratitude and Faith to be their constant companions. My long-lost buddies, Personal Prayer and Scripture Study need to be welcomed back into my home too.

It's Thursday--Go Harass Your Fellow Blogger!

It's Thursday--Go Harass Your Fellow Blogger!

I totally cased and stole this idea from Jennyhaha's flaw and disorder formerly known as Girl in Her Underwear and then Girl Exposed. Jenny's daughter, Lindley, is going to an important pediatric cardiology appointment tomorrow to determine when she will need to have her heart surgery. On top of Lindley having a newly diagnosed heart condition, the family realized that the insurance they purchased was bogus and are now frantically trying to find a way to pay for such a surgery. Lindley is an adorable little 2 year old angel who never does anything wrong with her saintly twin sister. You HAVE to go to Jennyhaha's blog and scroll down to see a picture of Lindley and send some prayers her way.

Now back to the Go Harass Your Fellow Blogger: Here's what Jenny wrote:

It's a little known fact that Thursdays are also "Harass Your Fellow Blogger" day. This is how it works, and I think everyone should do it....unless you're one of the cool people who is already doing it! There are a LOT of cool people already doing it!

You go to somebody's blog...it doesn't matter if you've visited there before or not...and in their comment section you say, "I don't believe you."

That's all! You could elaborate if you wanted to. It's completely up to you, and it doesn't matter if you believe them or not. You still tell them you don't believe them.

Then you come back to me and tell me if you did it.

I may even go to that person's site and add, "I don't believe you either."

I have already harassed 5 blogs today and it's quite fun! So go ahead and don't believe me! Pass it on! Go to Jennyhaha's blog and don't believe her either! It'll cheer her up.

Thought for the day:

I saw this on a bumper sticker tonight and thought... yeah, I totally get it!

Somedays it just doesn't pay.......

to chew my way out of the restraints.

I think I'm broken....

Or at least I've sprung a leak. I've been boo-hooing all day today. Could it be due the fact that I started a new anti-depressant and I may need a bit of a higher dose? Could it be due to lack of sleep and the stress of staying up late at night with Jess and then having to get up early to get my boys off to school... maybe because Karl has been in Phoenix (and working) so much and not here to help relieve a little of the stress? Maybe it's because my fibromyalgia is really acting up from the cold that we are not accustomed to and I'm dealing with a lot of pain... Maybe it could be that Jessica had a lung bleed Friday and all those fears have resurfaced or that she is having a lot of pain too. Or possibly because someone at the nursing agency has it in for us and has been causing all kinds of problems for the last few weeks and has been contacting Jessica's new case manager and trying to convince her that we are abusing the system and mis-using the services?

I got a call from the case manager today and she wants to have a meeting with me and the nurse supervisor from the nursing agency and see what services Jessica REALLY needs. She said something about "this has been going on a long time and I just walked into the middle of it" (huh?) and "maybe Jessica was a lot sicker when these services were set in place and she is doing better now". As soon as I started to talk to her I fell apart. Jessica is NOT getting better, if anything she is getting worse. I told her about the lung bleed she had on Friday and sobbed as I explained to her that there is nothing that can be done to help her. I quivered as I answered her question as to what is causing the bleeding - thousands of collaterals (blood vessels) that go from the aorta to the lungs that are bulging... waiting to burst and bleed into the lungs. We had thought that we had the bleeding under control with the morphine but now she is starting to have some bleeding and it could get bad really fast. She is having more pain and doesn't even feel well enough to have her hair washed most days. The case manager asked if she could get some type of blood clotting agent and I explained that Jessica could be having TIAs (tiny blood clots going to the brain) because her blood is already too thick due to lack of oxygen. No, we can't do anything that could make her blood even thicker. We are going to see a neuro-opthomologist next Thursday to see what he thinks. We also have to see the pulmonary doctor and cardiologist in next couple of weeks. We have so many appointments coming up that I just didn't know whether I was coming or going. I kept apologizing for crying the whole time - (I HATE that! I prefer to cry in private - if at all.) She finally said, "It seems like it's not a good time for us to get together so call me when you have time." *duh!* I don't think it's ever a good time for two outsiders to come in and gang up against me and see how many services they can take away! What good am I going to be to Jessica if I am so exhausted I'm in a coma or so stressed out that I'm in a straight-jacket in a padded cell? (ok, so I'm being a drama queen here, but hey, today it feels that bad)

The only service they are providing is for home health aids to come and care for Jess for a few hours a day. They help her have her bath, do her hair, help her dress, fix her food, remind her to take her meds (that I set out) and keep her company when I have to run errands like buy groceries or even have a nap. (oh, the abuse of the services - as if I'm out partying every day) Apparently someone (THE person - I won't name names) asked one of the aides if she does dishes and she said yes. OH NO! Call the police! They are only supposed to do Jessica's dishes - and only once a week, apparently. So now everyone is in a frenzy because a couple of aides want to be helpful. PUH-LEEZ.

I was back in my bedroom where hopefully, Jessica couldn't hear me sob. I tried to pull it all together because she needed me and after a few minutes the phone rang. It was the case manager again. Oh great, now what? Well, she sounded a bit compassionate this time. She said that she noticed that we are not receiving nursing services and they could provide that. I asked if she was offering a once a month scheduled visit or if I could call someone to come over and take a listen to Jessica's lungs and take her vitals if I thought she was getting into trouble. No. It would be a once a month visit. No thanks. I had to explain to her that we already went that route and it didn't seem to help. Last winter we had a nurse coming out once a month and 3 or 4 days after one of her visits Jessica was hospitalized with pneumonia. Jessica can get very sick very fast. The nurse wasn't able to pick up that she was getting sick. Also, I have a pulse-ox that I use to monitor her O2 sats and heartrate. She is having some PVCs but the cardiologist is aware of those and there's nothing they can do about it at this point. Again the tears start. I can see the PVCs on the pulse-ox and again, I didn't think that a nurse coming to take vitals once a month would really be beneficial but thank you anyway. I am up late at night with Jessica then up with my boys while she is still sleeping, so I catch naps any chance I get. We have so many appointments that having a nurse come was just one more appointment I had to be up for. Again I appologized for being so emotional. She responded that we are going through a lot and that it's natural for me to be overwhelmed and that I don't need to appologize. All of a sudden the phone went dead, the oxygen concentrator started beeping and the lights went out. GREAT. The power went out. (I know I paid the bill!) I went outside to get an oxygen tank to hook Jessica up to since her concentrator doesn't work without electricity. Wonderful... the tank is empty so I have to take the regulator off and put it onto a new one. It's windy and coooold! The wind was blowing right through me - pain! So while Jessica calls me from her bedroom that she is scared, I frantically hook up the oxygen and try to calm her down. Thank goodness for the princess light I got for her that runs on batteries! It was daytime but so cloudy that it was fairly dark inside the house.

Then the lights come on. yay. Then the phone rings. ugh! This time it's my neighbor who wants to know if my lights went off too. Good. I'm glad it's not someone who wants to yell at me and at least it's not just my house or my fault the power went off. After a few more tears talking to my friend (she is the one who's mom died from cancer a few months ago) I felt better knowing that she cares and is on my side. I decided to call the case manager back so she didn't think that I just hung up on her. I NEED her on my side. The case manager seemed concerned and apparently she had tried to call me right after the phone went dead. She was hoping that everything was ok. I explained to her that I was outside getting the oxygen ready for Jess. She didn't even think about my having to take care of oxygen needs with the power going out... maybe she will get a little bit of an understanding what is involved in caring for Miss Jess? I can only hope. She seemed to end on a fairly good note and said for me to just call her when things settle down a bit.

The power went on and off all afternoon. I used my land-phone to call the power company and apparently there was a lot of that going on due to the high winds. When Jessica's aide came we decided that Jess should not have her hair washed. What if her hair was wet and the power went off? She would freeze and get sooooo blue if we couldn't get her hair dried right away. There have been many times lately that Jess will get a bit chilled just by getting out of bed to go to the bathroom at night and she just shakes so badly... teeth chattering and body shaking uncontrollably - then she tells me that she hurts all over. We don't want her to get chilled! So I am going to have to help her wash it tomorrow. There's no aide scheduled until Monday - at least I hope they have filled that spot. Tuesday I get to go get my head drilled off - I have a badly cracked tooth and need a crown. Oh, the fun never ends.

Snow Slideshow

I've added more snow pictures to the slideshow. If you click on a picture it will open up in a new window so you can see a larger size. If you would like to view all the pictures without having to wait for them, click "View All Images" right below the slideshow. Enjoy!

SNOW DAY!

Amazing! The snow is still here this morning! Not only that, but the kids got a SNOW DAY! I don't know of any other time there has been a snow day in Tucson! It's amazing, all the bridges and many roads are closed and for about an hour we didn't know where Justen and Brandon were. Justen had left to take Brandon to school and then we found out that the school was closed for the day. Karl went out to find the boys and couldn't get past one bridge that goes over a wash... eventually we found out that Justen took several detours to get around closed roads to get Brandon to school. When they realized the school was closed, they had to take more detours to get back home. Fortunatley they got home ok. Now Karl is off to work to help close more ramps on the highway. It's only 25° outside right now - our low was 23°. Pretty crazy for the desert!

Stay tuned, more snow pictures to come later on in the day!

Update on Miss Jess

First I wanted to thank so many of you who sent us emails, sent out good thoughts, prayed and/or wore Christmas socks for Jessica. It is working! Jessica only had two episodes of coughing up blood and the second time is was minimal. I took Jessica to her cousin's princess party and she enjoyed herself. She was concerned about getting too worn out so instead of helping her get into her princess dress, I just put it into the car. (The last time one of her cousins had a princess party Jessica got so worn out and short of breath just trying to get ready that we didn't go.) There were several little girls wearing princess dresses and after awhile Jessica decided that she wanted hers on. I helped her put it right over her clothes and that worked out great! All the girls got to do some crafts and Jessica made a princess bookmark. I forgot my camera but my sister got some great pictures. Hopefully I'll get some from her and then I can post some here. Jessica did get a headache and some other pain but we were able to manage it ok.

It's Snowing in Tucson Arizona!

Austin really enjoyed playing in the snow!




Jessica and Brandon in the snow... Jessica was trying to catch snowflakes on her tongue. Jessica said that today is the BEST DAY EVER! Jessica can't travel to the mountains to play in the snow due to her heart/lung problems - we tried it when she was 6 years old and we almost didn't make it off the mountain in time! It rarely snows here in Tucson so it was a special treat for her to be able to play in the snow.



This is Bill. Brandon made this snowman on the swing.

Look at how much snow has accumulated on Karl's patrol truck.


The palm tree's leaves are weighed down by the snow.


We've never had this much snow in Tucson before! Look at how much snow is on the tree.

Here we go again... had "that" talk with the doctors again

Jessica started coughing up blood this afternoon. She called me while I was out picking up Brandon from school. She was quite upset and of course I came home as soon as I could. I called her new primary care doctor who had her nurse call me back and tell me to take her to urgent care. They are short and she didn't have time to see Jess. I was quite concerned that she didn't even talk to me herself. :-( So anyway, I told them that I would call the pediatric cardiologist (PC) before taking her anywhere.

I called the peds cardiologist (PC) and he was concerned about Jessica and asked if I had called the pulmonary doctor yet. I said no and after a bit of a conversation he asked me if I would like him to call the pulmonary doc and I said sure! It took awhile for him to get ahold of the pulmonary doctor but after he did he called me back. First thing he asked was if Jessica was still involved with hospice. I said no, they discharged her over a year ago. Both he and the pulmonary doctor had thought that was the case but just wanted to check and make sure. He explained that with Jessica, we don't know what to expect. So many times when he has thought that Jessica was in trouble she has turned around and pulled through. On the other hand, Jess may not have a lung bleed for months and then all of a sudden she could have a major one and that would be "it". The question would be then, if something were to happen, would we want to be in the hospital or at home? Both the PC and pulmonary doc have parents who are in their 80's and have living wills. He goes on to say that many times people who are in hospice want to be at home but when the time comes for one reason or another decide to go to the hospital. They know that there's not anything that can be done at the hospital that can't be done at home, but they feel more comfortable being in the hospital. Now with Jessica, this could be a small lung bleed and she will be fine tomorrow or it could turn into something major. It's up to Karl and I as to what we want to do. Karl definately wants us to be at home but I'm not quite so sure. I reminded him that in Jessica's case we are not dealing with an 80 year old mentality, we are dealing with more like an 8 year old. He agreed. I said that I really think we should do what would be most comfortable for Jessica. By this time Jessica had stopped the hymoptysis (coughing up blood) and seemed to be in better spirits. The PC told me that he was going out of town tomorrow but it would only be for the day. Our pulmonary doctor is on call this weekend and knows that I may call if things get worse. The pulmonary doctor was the one who helped us get hooked up with hospice and has known Jessica for many years.

I feel comfortable keeping Jessica home and if things get worse I know I can call the pulmonary doctor. None of us feel it's a good idea to take Jessica to urgent care since she would only be exposed to other illnesses and they wouldn't be able to do anything for her. Jessica had multiple x-rays when she was having frequent lung bleeds in the past and it never showed any blood. They would need to do a ct-scan in order to see it.

So far Jessica is feeling fine with staying home. When she first started coughing up blood she wanted to go to the hospital but after it stopped she has been feeling more comfortable. She also feels better knowing that her two best doctors know what is going on with her and say that she is ok to stay home. My neice is having a princess birthday party tomorrow and I reminded her that if she is in the hospital she won't be able to go to the party. She had forgotten about the party and now has a reason to want to stay home. She said that she wants to take a bowl to the party just in case she coughs up blood at the party. I jokingly said of course, since Aunt Alice doesn't have any bowls in her whole house. lol. I remember when she was coughing up blood practically daily and it was just a way of life. I guess we may be facing that again.

Any good thoughts and prayers would be greatly appreciated.

Showing off our talents

Karl and I make a pretty good team! Good thing too, especially considering we've been married almost 22 years! (*gasp*! How did we get so old already? lol) Karl really enjoys woodworking and I enjoy decorative painting. Some of the things we do have patterns, like the Santa, decorative pieces on the shelves including the birdhouses, country girl doll, the door on the bear cabinet and other country painted items, but none of the furniture had any instructions at all. I had the pattern for the painting on the door of the bear cabinet and Karl made the cabinet to fit the door! Same thing with the bench with the pansies on it. We designed the decorative shelf with the hearts and pegs on it together. We had a picture of the bench and Karl made it to fit right on our small front porch. The only thing that Karl had a pattern for is the armoire. Here are just a few of the projects that we've done together.

What's so great about statcounter?

It's kind of fun to see how many people come to see my blog on a regular basis, how many people accidentally come accross it, what words people have searched and ended up finding me... but one of the most fun things that Jess and I like about the statcounter is the MAP! It's fun to look at the map and see where the visitors come from. Sometimes there are so many hits from different places that apparently each map can hold only so many so then there are two maps. Anyway, here are the two that I got off statcounter tonight.

Happy Birthday Angel

I want to take a moment to honor a dear, sweet little girl who has touched so many lives across the world.... Bethany Katrina Frances English. I got acquainted with Bethany's dad, Dan, before Bethany was even born. You see, Bethany was diagnosed in utero with complex congenital heart defects. Dan searched online for information and support to help him and his better half, Jo, deal with their daughter's serious heart defects. Dan was calling Bethany "bump" up until the time she was born. Bethany had several nicknames such as "Bethy" and "little moo". Apparently that is an endearing name in England. ;-)

After Bethany was born, not only did she have several heart defects but also other problems including malrotation of the intestines, stomach in the wrong place and neuroblastoma, a type of childhood cancer. Bethany underwent surgeries for the cancer, reattachment of the stomach and later on more surgeries for her many heart defects.

Bethy could always make me smile. Dan would write about her antics and the trouble she would get into but she usually got away with it since she had daddy wrapped around her little finger. There were a few times that I actually got to see her on Dan's webcam. Once we even did the voice thing with the webcam on the yahoo messenger and it was so sweet to hear her voice. She reminded me so much of Jessica when she was little. Same sweet voice and feminine mannerisms. Another way that Bethy reminded me of Jessica is that she was a miracle. She beat the odds so many times! I used to always say that Jess didn't let a little thing like having heart surgery and a stroke get her down. Bethy had a stroke when she was and infant too. I am still so amazed that Bethany not only survived the cancer, stroke and several serious surgeries, but that she loved life and lived it to it's fullest.

Sadly, Bethany passed away on Feb 21, 2005 following a very complicated heart surgery. Bethany had just turned 4 years old the previous month.


In October, a national UK magazine (Best Magazine) ran an article about Bethy in the form of an open letter, written by her mother, Jo. Unfortunately the website where you can read the article is down but I will try to find a way to post it so you can read it. Don't forget to have plenty of tissue on hand.

Happy Birthday Angel Bethany.
You are greatly loved and missed.

Update: If you would like to read Dan's tribute to his daughter click here: Happy Birthday My Sweet Angel Jo also has a message and pictures of Bethy on her blog: Happy Birthday Baby The magazine article can be found here: Jodie's true story

Finding Nature Amusing

Karl and Brandon were playing basketball outside today when they thought they saw a hawk flying overhead. Karl looks closer and realizes that it's actually a falcon and just as he and Brandon were talking about it, the falcon attacks smaller bird and knocks it to the ground. As the falcon flies lower to pick up the now dead bird, our cat, White Toes, pounces on the dead bird and runs off to the back yard with it. I knew nothing of what had happened and I happened to look out our sliding glass door that leads into the back yard just in time to see White Toes going past with a bird in his mouth. He seemed to have a little bounce in his steps as if he was very proud of himself. I thought, wow, "I guess White Toes has finally learned how to catch birds". Karl and Brandon then come into the house and tell me what just happened. They were laughing as it seemed that the falcon was kind of surprised that the cat ran off with his dinner. We started joking about it and decided that at least if White Toes can't catch his own birds then at least he knows how to steal them. LOL!

We went outside to see what White Toes would do with the dead bird. We found him underneath the trampoline and he seemed to be trying to play with it. Since it wasn't going to move any he decided that instead of playing with it, he might as well eat it. It was pretty funny watching him take a big bite of feathers and then try to spit them out. We had a good laugh over it. I know, sounds gross but it wasn't that bad. Maybe I'm used to it since the cat I had when I was groing up was good at catching birds. In fact, she would bring the bird to our back door and meow and meow until someone went out to tell her that she had done a good job... and only then would she take it somewhere to eat it.

Are we still living in the dark ages?

I didn't know some people were still living in the dark ages. Look at what I found when I searched for a google support group for congenital heart defects:

The real cause of heart defects.

"Newsgroups: alt.support.heart-defects
Date: Thu, 17 Aug 2006 21:33:50 -0500
Local: Thurs, Aug 17 2006 7:33 pm
Subject: The real cause of heart defects

The doctors want us to believe that heart defects are caused by some
sort of medical condition. They're wrong. They just tell us that
because they know they can get their greedy hands into out bank
accounts.

Heart defects are caused solely by demons. The heart is the symbol of
love, and it's proper functions are controlled by "God" or good
spirits, (whatever you believe in). A heart goes awry when an evil or
angry spirit invades it. People who do not share, do not spend their
life doing good, or who become too self centered are the ones whose
hearts are taken over by these evil demons. Once this demon enters
the heart, the damage begins. They start by blocking the flow of
blood, or damaging the hearts functions in other ways. This condition
worsens and eventually these demons take total control of the heart.
Soon, the persons body begins to deteriorate and fail. When the demon
takes complete control of the heart, the good spirits leave and the
demon is in control of this heart and the body it keeps alive.

There is no way that surgery does any good. The demons must be
removed by the heart owner. However, there are times it's too late.
The person no longer has control of their own body and the demons now
own the person. These people die. Those that still have some of the
good spirits are able to heal themselves. The surgeons do nothing, in
fact they often do more damage than good. Some people report feeling
better after heart surgery and this may be the case. However, the
better feelings are caused by the prayers these people receive from
friends and relatives during the surgical procedures, NOT by the
surgery itself.

The solution is preventative medicine. Be in control of your life,
live a life of love and these evil demons will not enter the body.
This is the only sure method to prevent heart defects.

Edwin"

I was tempted to email the writer and tell him he's an idiot but I figured... what's the point? I have better things to spend my time on than arguing with him. You know what they say, never argue with an idiot because those who are watching may not be able to tell the difference. lol.. I have no idea of this guy knows someone with heart problems or who he is. Is he even for real or just posted to a board to try and get people riled up? I don't see any responses to his post so if that was his intent, he failed. A friend of mine suggested that I blog about this so I decided I might as well.

I know there are many of us heart-parents who have had to deal with other people giving us poor advice about things they know nothing about. Some are trying to be helpful and others seem to be critical whether they intend to be or not. I have to tell you that in the 18+ years that I have been a heart-mom I have NEVER had anyone tell me that Jessica's heart defects were caused by demons. I have been told to "just have faith and not worry about it" far too many times by people who don't live with caring for a very sick child who cries out in pain, fear, loneliness... spent endless nights holding a child who struggles to breathe either because her body can't handle a fever so her breathing is compromised or her asthma is acting up or she has pneumonia for the umpteenth time.... held a child who is coughing up blood, is choking, gasping for air and crying out that she's not ready to die... sat by your child's hospital bed with her hooked up to all types of monitors, breathing machine and endless tubes and wires coming out of her everywhere and being told she is dying and to spend her last hours with her... then when she pulls through only to find out days later that she is blind and paralyzed. These are only some of the things I have lived through with my precious child that God entrusted to me. We had another rough night last night and a very emotional morning this morning. I swear, if anybody tells me to my face that her heart defects are caused by demons - today they will get a black eye! LOL!

I do, however, appreciate all of you who are supportive and lend a listening ear. What a blessing to me you all are!

Out of the mouths of babes...

I have debated whether to blog this or not but it's too darn cute/funny not to. The names of the guilty (or innocent) parties are being left out except fot mine and Jessica's. hehe... Let me preface this conversation by reminding you, the reader, that Jess is at the level (emotionally, socially, academically) of about an 8 year old.

Jessica's home health aide arrived today and Jessica decided to tell her about a young woman we know who is pregnant. Said young woman is still in her teens and unmarried.

Jessica announced "She had sex with a boy!"

Both the aide and I stood and looked each other in the eye, being shocked at her announcement and also trying not to laugh.

"And she did it the wrong way!" Jessica continued.

The aide and I couldn't contain ourselves any longer and we burst out laughing, both of us turning bright red. I'm standing there wondering what she meant by her last statement. I didn't know there was a right way or wrong way and wondered if I had been doing it wrong all these years. lol

So I asked Jess what she meant about doing it the wrong way and she said, "She isn't married." Big sigh of relief! The aide and I both are trying to control our laughter.

Then Jessica tells me that she needs my help in the bathroom and leaves. The aide told me that she was shocked by what Jessica had said since she didn't think that Jess knows anything about that stuff. I told her that Jess was quite confused when she found out her friend was pregnant and couldn't understand how that happened because her friend isn't married. As an answer I told her that her friend had sex with a boy. Then Jess asked me if sex meant kissing...

I hear a muttled voice from the bathroom, "I CAN HEAR YOU!!!" Then laughter.

Later Jess asked me, "Am I older than (friend)?"

Me, "Yes, you are."

Jess, "Have I always been older?"

She is still my little girl. :-D

What a week! And it's barely Tuesday? - No wait, it is now early Wednesday!

I knew this week was going to be a rough. Karl had to go to Phoenix for the week and I'm THE parent. Jessica is having a lot of pain and breathing issues tonight so I'm up with her and I will have to get up at 7:00am to get the boys off to school. Austin can walk to school because it is close enough but I have to drive Brandon. I took Jessica to our support group, Tu Nidito, yesterday evening and I guess it wore her out. It wore me out too! But it was worth it. Jess had such a good time and she hasn't been out of the house in quite awhile. I was up pretty late last night, had to get up and drive boys to school early this morning and just as I was about to walk out the door, Jessica got up. As a treat I brought home pancakes and bacon from McDonald's for her and she finally went back to sleep at about 10am... then I crawled back to bed and was woken up several times by the phone and finally it was time for me to go out to pick up kids from school, go grocery shopping while Jessica's aide was here and I pretty much over-did it myself. I had hurt my back - pulled a muscle - over the weekend and have been in pain. OUCH.

I thought I had gotten Jessica all settled into bed awhile ago and told her I needed to go have a hot shower to help my back feel better. Well, before I was able to have my shower she was at my door crying from pain. I helped her back to bed and gave her some morphine. It was time for her to have her carafate (for her gastritis and ulcers) so I gave it to her. (I just hope the meds don't cancel each other out. I didn't want to give her morphine on an empty stomach but the carafate has to be given on an empty stomach.) Then Jess started crying about how it's hard on her for daddy to be gone. I tried to cheer her up by telling her that daddy will be home in 3 days... but since it was after midnight we could consider today to be Wednesday so now daddy will be back in just 2 days! She didn't fall for that and wanted us to have a special prayer. She was just sobbing by this point. I said that we should also have a prayer to help her be calm. So she decided to say the prayer for her dad to be safe and wanted me to say a prayer for her. (I guess she wanted two separate prayers) I prayed that her heart would be filled with comfort and love... that she would be able to rest and feel better and that her pain would subside. After calming down and being comforted by the prayers she was coughing and asked for another breathing treatment. I thought it might be too soon since her last one and got her tucked into bed. I went and had my hot shower only to come out and hear her still doing some coughing and clearing her throat like she does when she is having some difficulty breathing. I gave her a breathing treatment and now since it has been over an hour since taking her carafate she is eating a bagel. Now she wants more to eat. lol... I told her one more snack and that's it. It's after 2:00am and I have to be up at 5. I have to take Brandon and Austin to doctor's appointments tomorrow afternoon (when Jessica's aide is here), then a new Creative Memories customer is coming over to look at a new digital storybook made through CM, and I have another group thing to go to in the evening. Calgon, take me away!!

My blog has a new look!

I finally bit the bullet and switched over to the beta blog. I couldn't figure out how to get my Cbox and statcounter over here but my buddy Dan ermmmm... someone who may want to remain nameless, helped me fix it up nicely. I just wanted to say Thank You to Dan, I mean anonymous stranger. Thanks to Jo too for her help in finding a nice template and smacking said stranger for me. hehe...

Especially for Dan

Funny

Christmas photos

Christmas Eve at Grandma and Grandpa Jensen's house
Three generetaions of first-born Jensen sons:
Left to right: Karl, Richard and Justen


Jessica with Aunt Jenny and cousin Rachel


Rachel is 6 months old. Adorable!


Our house:
Brandon got a digital camera - the one he has been wanting!


Jessica with all her new barbie princesses!


Christmas Day at Uncle Chuy and Aunt Alice's house:
Jensen and Vivaldo cousins: Jessica, Austin, Justen and Brandon Jensen with Julie, Marissa and Jesse Vivaldo


Jessica and Uncle Chuy playing foozball against Dad and Austin - Marissa is watching. If you click on the picture you it will enlarge and you can see how "blue" Jessica was. She got short of breath playing but she had a good time. Jessica and Uncle Chuy won!


The following are some photos I took with my new digital camera. I am an amateur photographer but these were fun to do! These were all taken at my house.

Charlie likes to "hide" in the holiday decor. Can you find him?
(hint Charlie is our gray cat)

Update on my nephew - MRI results / Jessica to have an MRI too

Here is the most recent picture of my sister Karen's family.
Back row left-right: John (the dad), Karen (the mom) and Marcus.
Bottom row left-right: Aaron, Jackson and Noah

Marcus had an MRI two days ago and it shows positive for cancer. His cancer is coming back. We don't know how aggressively it will come back but for now he is taking a pretty hefty dose of chemo. The surgeon is out of town this week but will be back in time to study the MRI and meet with Marcus and his parents next Wednesday. We are all very disappointed that the cancer is back already. Please pray for the doctors to know what treatment plan to use and that Marcus will be able to enjoy his life. We have NOT given up hope by any means, we just know that it's going to be a long battle. I spoke with Karen at length today and we are trying to keep positive and lift each other up.

Jessica has an MRI tomorrow morning and we are hoping to get good news then. (I guess hearing that she is not having mini-strokes would be considered good news, right?) If she is having mini-strokes or bloodclots going to her brain, there isn't anything that can be done for her - so then it would be terrible news. We are quite certain that Jess doesn't have a tumor so we aren't too worried about that - we're just hoping and praying that we aren't dealing with bloodclots. We appreciate your good thoughts and prayers too!

Tagged

I got this from my buddy Dan's blog. I only did part of it since I didn't want to be here for days trying to fill it out. lol It was a long one with several parts! Here is part I

"Been There, Done That"
(red means I've been there)

01. Bought everyone in the bar a drink
02. Swam with wild dolphins
03. Climbed a mountain
04. Taken a Ferrari for a test drive
05. Been inside the Great Pyramid
06. Held a tarantula
07. Taken a candlelit bath with someone
08. Said “I love you” and meant it
09. Hugged a tree
10. Bungee jumped
11. Visited Paris
12. Watched a lightning storm at sea
13. Stayed up all night long and saw the sun rise
14. Seen the Northern Lights
15. Gone to a huge sports game (and survived the crush afterwards)
16. Walked the stairs to the top of the leaning Tower of Pisa
17. Grown and eaten your own vegetables
18. Touched an iceberg
19. Slept under the stars
20. Changed a baby’s diaper
21. Taken a trip in a hot air balloon
22. Watched a meteor shower
23. Gotten drunk on champagne
24. Given more than you can afford to charity
25. Looked up at the night sky through a telescope
26. Had an uncontrollable giggling fit at the worst possible moment
27. Had a food fight
28. Bet on a winning horse
29. Asked out a stranger
30. Had a snowball fight
31. Screamed as loudly as you possibly can
32. Held a lamb
33. Seen a total eclipse
34. Ridden a roller coaster
35. Hit a home run
36. Danced like a fool and not cared who was looking
37. Adopted an accent for an entire day
38. Actually felt happy about your life, even for just a moment
39. Had two hard drives for your computer
40. Visited all 50 states
41. Taken care of someone who was drunk
42. Had amazing friends
43. Danced with a stranger in a foreign country
44. Watched wild whales
45. Stolen a sign
46. Backpacked in Europe
47. Taken a road-trip
48. Gone rock climbing
49. Midnight walk on the beach
50. Gone sky diving
51. Visited Ireland
52. Been heartbroken longer than you were actually in love
53. In a restaurant, sat at a stranger’s table and had a meal with them
54. Visited Japan
55. Milked a cow
56. Alphabetized your CDs
57. Pretended to be a superhero
58. Sung karaoke
59. Lounged around in bed all day
60. Played touch football
61. Gone scuba diving
62. Kissed in the rain
63. Played in the mud
64. Played in the rain
65. Gone to a drive-in theater
66. Visited the Great Wall of China
67. Started a business
68. Fallen in love and not had your heart broken
69. Toured ancient sites
70. Taken a martial arts class
71. Played D&D for more than 6 hours straight
72. Gotten married
73. Been in a movie
74. Crashed a party
75. Gotten divorced
76. Gone without food for 5 days
77. Made cookies from scratch
78. Won first prize in a costume contest
79. Ridden a gondola in Venice
80. Gotten a tattoo
81. Rafted the Snake River
82. Been on television news programs as an “expert”
83. Got flowers for no reason
84. Performed on stage
85. Been to Las Vegas
86. Recorded music
87. Eaten shark
88. Kissed on the first date
89. Gone to Thailand
90. Bought a house
91. Been in a combat zone
92. Buried one/both of your parents
93. Been on a cruise ship
94. Spoken more than one language fluently
95. Performed in Rocky Horror
96. Raised children
97. Followed your favorite band/singer on tour
99. Taken an exotic bicycle tour in a foreign country
100. Picked up and moved to another city to just start over
101. Walked the Golden Gate Bridge
102. Sang loudly in the car, and didn’t stop when you knew someone was looking
103. Had plastic surgery
104. Survived an accident that you shouldn’t have survived
105. Wrote articles for a large publication
106. Lost over 100 pounds
107. Held someone while they were having a flashback
108. Piloted an airplane
109. Touched a stingray
110. Broken someone’s heart
111. Helped an animal give birth
112. Won money on a T.V. game show
113. Broken a bone
114. Gone on an African photo safari
115. Had a facial part pierced other than your ears
116. Fired a rifle, shotgun, or pistol
117. Eaten mushrooms that were gathered in the wild
118. Ridden a horse
119. Had major surgery
120. Had a snake as a pet
121. Hiked to the bottom of the Grand Canyon
122. Slept for more than 30 hours over the course of 48 hours
123. Visited more foreign countries than U.S. states
124. Visited all 7 continents
125. Taken a canoe trip that lasted more than 2 days
126. Eaten kangaroo meat
127. Eaten sushi
128. Had your picture in the newspaper
129. Changed someone’s mind about something you care deeply about
130. Gone back to school
131. Parasailed
132. Touched a cockroach
133. Eaten fried green tomatoes
134. Read The Iliad - and the Odyssey
135. Selected one “important” author who you missed in school, and read
136. Killed and prepared an animal for eating
137. Skipped all your school reunions
138. Communicated with someone without sharing a common spoken language
139. Been elected to public office
140. Written your own computer language
141. Thought to yourself that you’re living your dream
142. Had to put someone you love into hospice care
143. Built your own PC from parts
144. Sold your own artwork to someone who didn’t know you
145. Had a booth at a street fair
146. Dyed your hair
147. Been a DJ
148. Shaved your head
149. Caused a car accident
150. Saved someone’s life

I usually feel that I lead a pretty boring life except for the medical stuff that always seem to pop-up... but after looking over these questions, I guess I've done more than I thought I had. Some questions were borderline such as had major surgery... I had my appendix out.. I don't think that is considered major surgery but at the age of 12 is sure felt like it! lol! Been a DJ... well, for a school dance I did but only for a little while.... does that count? I don't know... I'll go ahead and count it. The mountain I climbed wasn't really all that tall but it was hard for me to hike it so I am definately counting it! lol! And Karl's dismay, I really have hugged a tree. hehehe...

I enjoy reading these things about other people - a fun way to get to know them better ... so Tag to anyone who wants to do it!

Santa Claus is Coming to Town!!!

Actually, Santa already came ... to our house! Our awesome local support group, Tu Nidito, arranged for Santa to come to our house since Jessica can't go to the mall to see him. Jess has to be careful not to get sick and being at the mall and around lots of other kids could cause her a lot of problems. Santa has come to our house for the last 3 or 4 years to find out what the kids want for Christmas. This year he came in an eye-catching firetruck! This firetruck was all decked out with lights, Christmas music, Christmas decorations and even a toy train. Here are some pictures of our wonderful evening.

Santa coming towards our house from the firetruck

Santa visiting with the kids.
Left to right: Brandon, Austin, Santa, Jessica and Justen

Santa brought the kids each a small bag of goodies

Jessica and Santa in front of the firetruck

Many of our neighbors came out to see the firetruck and realized that Santa was there. Here are a few of our friends with Jessica, Austin, Brandon, Justen and Santa. Look at the plastic reindeer and Santa all lit up on top of the firetruck!

Jessica had gone through her toys and picked out a few things to give to Bree (the little girl in the picture). After Santa Left, Bree and her mom came over and Jessica gave Bree her gifts. Jessica and Bree are such good friends! Brandon and Bree's mom, Cathy, enjoy the visit too.

What's with the Random Questions?

I was trying to post a picture of myself on my profile and noticed something called a Random Question at the bottom of the page. The question I saw said that if I wore a sweater that went all the way down to my hips, what color of belt would I wear? Well, what a stupid question... no way am I going to wear a belt! Doesn't a person need a WAIST in order to wear a belt? lol And what decade were they thinking of anyway? So I decided to ask for another random question which was: If you can whistle and the wind can whistle why do you sing in the shower? HUH? Whistling is totally different than singing and I'm sure most of you know that wind isn't made of water as a shower usually is. durrr... So I asked for another one and this is what I got:

If you were a cannibal, what would you wear to dinner?

Well, I think the answer is OBVIOUS! But I would like your responses please!