Monday, February 26, 2007

Our Government at it's finest

So the State of Arizona lost (misplaced, accidentally shredded, sold?) quite a few of their employee records. If that isn't bad enough, Karl received a notice that he had to provide proof that he is a US citizen by a certain date. huh? Karl was required to provide proof that he was a US citizen when he applied for this job 8 years ago. Karl's sergeant was also one of the employees who had to provide this documentation.

Karl asked his sergeant what would happen if he didn't provide that information? Would they deport him to DENMARK since that's where his ancestors came from? He is like 4th or 5th generation that was born in the US.

Saturday, February 24, 2007

Philosophical questions

Sometimes we have some very philosophical discussions as a family. Just the other day we were discussing the age-old question: "If a tree falls in the forest and there's nobody there to hear it, does it still make a sound?" If that isn't hard enough to figure out, here are a few more impossible questions to answer:
If a tree falls in the forest and a woman isn't there, is it still the man's fault?
If a tree falls on a Tibetan monk, will he break his vow of silence?
If a tree falls in the forest and lands on a mime - will anybody care?

My head is spinning with the endless possible scenarios! Don't even get me started on the "Mommy! Mommy!" ones. We'll save those for another time.

Wednesday, February 21, 2007

The Naked Truth About CHD

During the week of Feb 7 - 14, I posted several messages about CHD (Congenital Heart Defects). Today is a very somber day - today marks 2 years since a very special little girl lost her battle with CHD. People gathered around the world to mourn the passing of 4 year old little girl named Bethany Katrina English. I wrote about her last month on her birthday - you can read that post here. Today Dan wrote a tribute on his blog to his daughter and posted more pictures and some music videos that Bethy loved. Be sure and grab some tissue. Bethany and her family have touched many lives and my thoughts and prayers are with them today and every day.

I have also written about a little girl named Zoe who passed away from complications due to her CHD. I wrote about her and her brother Zurik here. We knew Zoe personally. We met her when she was just an infant and would see each other at our local support group meetings and CHD awareness events. Zoe went through so many surgeries and had so many obstacles to overcome - she even had to use a child-sized walker to learn to walk but she was as determined as ever. Jessica and I think of her and speak of her frequently too. Our thoughts and prayers go out to Zoe's family too

There are many, MANY babies, children, teenagers and young adults that I have "known" through online support groups who have died because of the heart defects. They had loving parents who did everything in their power to help their children. Many surgeons, pediatric cardiologists, nurses and other specialists have fought long and hard trying to keep these precious children alive. Many CHD children can live fairly "normal" lives so long as their hearts are holding up. Some end up needing pacemakers, defibrillators, numerous palliative heart surgeries or even heart transplants. Many times they suffer complications to surgeries such a strokes, collapsed lungs, blood infections, blown veins from numerous IV sticks, edema from retaining fluid (these are just a few possible complications - all of which my brave daughter has suffered through). Like my daughter they can live in congestive heart failure teetering on the edge between being dehydrated or having their lungs fill with fluid - for years.

The naked truth about Congenital Heart Defects isn't pretty. It isn't fun and these children didn't ask for it. Their parents didn't cause it and there is NO CURE for it.

My daughter has survived numerous lung bleeds caused by her heart and pulmonary artery defects. She has survived being blind and paralyzed following strokes. She had to learn sign language to facilitate speech following a stroke which affected the speech area of her brain. My daughter's body is deteriorating due to her heart defects and the lack of oxygen. She doesn't have the stamina to go to school or go out and to "regular" kid things very often anymore. BUT we are still here and we are still fighting. We still fight to have a quality of life that is worth living. We fight to be able to have one more birthday celebration, one more Thanksgiving and one more Christmas together. In the end, CHD will claim my daughter's life too. My husband and I just paid the last payment on the cemetery/mortuary plan we set up for Jessica. We set it up several years ago and have been making payments until now. It's both a relief to not have to pay it anymore but overwhelming because we know that we need it - that some day we will have to use it. For now I pray that day is a long way off.

Wednesday, February 14, 2007

A Valentine My Son, Austin, drew for me.

Isn't he sweet? hehehe! He is 11 years old. I will be giggling about it for days!

Great Poem about CHD Awareness Day

CHD Awareness Day!!

Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.

A man and a woman embrace…
Their baby is in surgery…
They long to see her face…
They haven’t got to hold her yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.
Prayers fill this busy waiting room…
And mom and dad are scared…
The tiniest hearts are repaired.

A child’s growing fast…
His mom thinks…can this last?
It’s almost easy…to forget…
That anything is wrong…
Her child seems so strong.

Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…
The doctor’s are all baffled…
They fear that he might die…
A family says goodbye…

Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.
Today…for just a moment…
Make time to tell someone you know…
“I’ve been changed by a heart defect”.

Author - Stephanie Husted

I almost forgot!
Happy Valentine's and CHD Awareness Day!

Miss Jess

Jessica's health has been a bit of a rollercoaster lately. As soon as I decide to send an update, her symptoms change and of course needs my attention - practically constantly - and before I know it, it's 2am and I've just shut down the computer and am headed to bed... and then I realize that I didn't update. Again.
Jessica came down with a cough and congestion. It was getting to where I was worried that she might cause herself to have another lung bleed. I sent out an email to family, friends and our wonderful CHD support groups and so many of you responded with good advice and support.

Jessica is doing better as far as her cough and congestion goes. She ended up with a fever and body aches. In fact, Friday night her fever got up to 102.4 but it was much lower on Saturday and it broke by Sunday. The breathing treatments helped her considerably so I didn't try the Mucinex D. The doctor's office did call me back on Friday and told me it was ok to use and I received many emails from families with CHD children who have gotten the OK from their doctors too. THANKS SO MUCH! I knew I could count on all you experts! The Delsym is a go too. I've either used it or Robitussin when needed.
After Jessica's fever broke and her body aches were better she started with a bit of nausea and diarrhea on Monday. She never threw up and was able to keep down jello, soda, Popsicles so I wasn't too worried about dehydration... and by the end of Monday the diarrhea was gone and she was able to eat real food. Tuesday she was able to eat and hasn't had any sign of diarrhea but she is still having a lot of tummy aches. Sometimes she holds her tummy and really complains that it hurts. She is still taking the Carafate and Prevacid so I just don't know what to think. I'll be giving her GI doc a call today. I just know they are going to say "there's nothing else we can do". At first I thought it was a viral thing but I'm not so sure anymore. The GI doctor did say that her Gastritis and Ulcerations could be caused by Hypoxia (lack of oxygen). It's been over 2 months since the Endoscopy and we've been very faithful about giving her the Carafate every single day even if it is a pain. Speaking of Carafate, Jess is receiving the generic and the first bottle was light blue tablets. They are huge horse pills - larger than most vitamins - and Jessica took them with no problem. The 2nd bottle they gave us was from a different manufacturer and they are the same size and white - but very chalky. Quite a few times when Jess has tried to swallow the pill it starts to dissolve right in her mouth! She gags and chokes... I've had her spit it out and she can't get the icky taste out of her mouth! I've tried dissolving the pill in a medicine cup and she will drink it, but the chalky stuff settles to the bottom and she doesn't get all of it when we do it that way and she still has chalky junk in her mouth. So I called our pharmacy and they are requesting the pills from the first manufacturer. Now all I have to do is remind them every single month when I order it because you know I can't count on them to do it right. It's just not right that she has so many problems at every turn.
Jess continues to be quite "blue" but she has been so happy since starting to feel better Monday night. She was very discouraged over the weekend that she was still so sick but the last couple of days she has been laughing and giggling at every little silly thing. We sure appreciate it when she feels well enough to smile and laugh. Most people, myself included, would not be smiling if we felt as bad as she does ALL THE TIME. She is just amazing.

Going to bed at night and staying in bed is still a very difficult thing to accomplish. Every. Single. Night. But we keep at it.

Monday, February 12, 2007

CHD Awareness Week

February 7 - 14, 2007 is a special week to recognize people born with heart defects, to remember loved ones who lost their battle to CHD, and to honor the dedicated health professionals who work with us.

More than 40,000 babies are born each year in the United States w/ a Congenital Heart Defect.

Congenital Heart Disease is considered to be the most common birth defect, and is a leading cause of birth-defect related deaths worldwide.

Despite the fact that CHD affects millions of families, a relatively small amount of funding is currently available for parent/patient educational services, research, and support.

My daughter is one of these children. I was completely oblivious to congenital heart defects (CHD) - I had never heard of such a thing before Jessica was born. I had heard of down syndrome and a few other birth defects but never of heart defects. I had no idea that CHD was so common. Once Jessica was born and was diagnosed her very complex CHDs it seemed like people started coming out of the woodwork with stories of people they knew who were born with heart defects - or of babies who had died of a CHD.

I had never heard of Congenital Heart Defects but it has changed my life - my family's life forever. It's the first thing I think about when I wake up in the morning and the last thing I think about when I got to sleep at night. My daughter has endured and overcome so many obstacles caused by her CHD. It affects every minute - every second of her life. CHD has almost claimed her life numerous times and in the end it will take her from me. As I sit here at 2:30am typing I hear her oxygen concentrator humming and the humidifier jar bubbling away. I hate that thing but in an odd way it is comforting... for I know that my daughter is still with me.... for now.

My daughter is my hero. She has shown me how to love unconditionally, live life to it's fullest and have faith even during the darkest hour. Each day is a blessing, even the really tough ones. Her innocence and love brighten even the darkest room. How wonderful it is that even at the age of 18 she wants a "Little Mermaid" coloring book and some markers. Just thinking about her makes me smile.

So for this week and
especially on Feb 14th, please remember the many children around the world are born with Congenital Heart Defects. I have known too many who have died way too young and others who undergo surgery after surgery just to stay alive - just as my daughter has.

If you would like more information about Congenital Heart Defects or want to help, please go to Congenital Heart Information Network.

Saturday, February 10, 2007

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.

Wednesday, February 07, 2007

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 ( 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.


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.

Sunday, February 04, 2007

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.

Thursday, February 01, 2007

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 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.