Jessica's Birthday Party

Welcome to Jessica's 19th birthday party, friends and family!

Susan and Randy



Jessica and Susan



Jessica and Amanda



Justen, Jessica and Grandma Jensen



Jessica with her Pirates of the Caribbean cake



Look at the cake!



Here's the side



The candles are lit! Don't worry, we take Jessica's oxygen off before lighting the candles. We don't need fireworks on her birthday! ha! She got all 19 candles out in one try! I didn't get a good picture of her blowing them out but she surprised us and did it!

Pirates of the Caribbean come to Jessica's party

Here is Jessica with Elizabeth Swann, Elizabeth's long-lost sister, Jack Sparrow and Will Turner.

I bet you didn't know that Jessica was such good friends with the cast from the movies, did you?

Here's Jessica with the cast on "Isla De Muerte" and the pirate's flag in the background.


Pirate Austin in the crow's nest flying the pirate flag.


Austin may have to be in the next movie. He looks great with the cast!


Of course these are friends of ours - from our church. They were so awesome to dress up and surprise Jessica. We really appreciated them coming to the party.

Even Jack Sparrow needs to eat.... sitting next to his dad.
In the background other party goers are enjoying Eegees sub sandwiches and slushes.

More Pirates of the Caribbean Party Pictures

Steven, Jessica, Tom and Randy

Donna and Jessica
(Donna is our neighbor who is battling cancer -we have requested prayers on her behalf in the past, please continue to pray for her. She is an awesome friend.

Jess and Kayla

Jess opening gifts

Wow! Look at this gift bag!

Georgia, Cousin Natalie and Jessica
Cool Harry Potter pillow! Thanks Barbara and Tom!

Jana, Jessica and Trevor

Georgia, Aunt Clarissa and Cousin Natalie at the craft table

Scott and his daughter with Jess

Rambunctious pirate women!
Kerri, Mona with Reesa in front.

The littlest pirate - Ava is 3 weeks old

Getting Ready For THE Party!

Miss Jess will be 19 years old on Sunday! WOW! AMAZING! We are having a "Pirates of the Caribbean" birthday party for her this Saturday. Jessica's therapist came on Tuesday and brought her an early birthday gift - a Jack Sparrow accessory kit. Jessica LOVES it! She must have put it on at least 5 times on Tuesday and almost as many times every day since then. Yesterday I took her to a dental appointment and she had to wear it there. hehe... Here are some pictures of her the day she got it. The last picture was after she had a bath and changed her clothes. She was pulling faces and I asked her to show me a mean face and that's what she gave me. hehe... (I'm sorry the photos are blurry, I hate it when I don't get good ones. I just hope I can take some non-blurry pictures during the party on Saturday.) We could have anywhere between 30 - 50 people. *gah!* We are cleaning the house and yard like mad.




I'm so scared! You don't want Pirate Jess coming after YOU!

Musical Monday

Today's Musical Monday is in honor of Memorial Day.

I appreciate the men and women who have given their lives and those who continue to fight for the rights and freedoms that my family and I enjoy. I also believe that no matter what your views are about the war in Iraq are, we need to support our troops. They put their lives on the line every single day. We need to support them and pray for their safe return.

I am Proud To Be An American.




It is the soldier
not the reporter
who has given us
freedom of the press

It is the soldier
not the poet
who has given us
freedom of speech

It is the soldier
not the campus organizer
who has given us
freedom to demonstrate

It is the soldier
not the lawyer
who has given us
the right to fair trial

It is the soldier
who salutes the flag
serves under the flag
and whose coffin is
draped by the flag
who gives the protester
the right to burn the flag

To our men and women in uniform....
past, present and future
God bless you
and Thank You.

Who will be the 10,000th visitor?

Wow, my site is at almost 10,000 hits. These are not unique visitors and I know that I am my biggest fan... meaning that I probably hit my site more than anyone just from posting a message and then editing it several times, responding to messages and other stuff that will reload that page and set the ticker ahead. But if you look at my little map down the left-hand sidebar it shows that I am not the only one who looks at my blog. Granted many of these could be visitors who stayed less than 1 second but who cares! They put a spot on my map! YAY!

Another interesting thing... clustrmaps shows a lot of places that have hit my blog that statcounter doesn't. I wonder why this is? Anyone? Anyone? Bueller?

I was thinking about having a little contest to see who would be the lucky person to hit 10,000 and send them something ... a prize of sorts... but then I realized that I have so much going on right now that by the time I actually mailed the prize out it would be time to have another contest for the 20,000th visitor. For example, I barely mailed out a scrapbook that I made for my grandmother. For Christmas. I had finished the album just before Christmas but never mailed it to her. So Grandma turned 90 years old in May. On May 9th to be exact. My mom even emailed me ahead of time to remind me to mail it to Grandma. I FINALLY mailed it on May 24th. I think I should call my aunt who is caring for Grandma to make sure that they got it. I hope it made it and is in good condition. Hey, at least it was for Christmas 2006 and not 1986. :-P

Oh, and Bri, I will get your Christmas package mailed to you too. Someday. Hopefully. But your 90th birthday is a ways off. At least by a few years.

UPDATE: I came online today to find my counter hit 10,009. Who was the 10,000th visitor? Please step forward and receive your "gift"... which would be my undying thanks for visiting my humble blog. I have found that blogging has been quite therapeutic for me and a fun way to spend the long evenings while trying to get Miss Jess to eat her snacks and get ready for bed. It's amazing to me that other people come by and read what I have to say. I've also really enjoyed participating in the Photo Hunters and Musical Mondays. I've made some great friends through blogging. I really want to thank all of you for stopping by and giving me encouragement. Have a great day!

Colorful

Here are some photos of my family at the County Fair. What a vibrant and COLORFUL place!
The first picture is of Austin on the merry-go-round. He is holding up his hand saying HI. Behind Austin you will see Jessica sitting on a bench and I'm sitting beside her holding onto her oxygen (and holding on to her as well). This is the only ride that Jessica will go on. She usually likes to spend most of her time looking at the arts/crafts and visiting the animals.


This next picture is of Dad walking by the vending stands. Jess is in her wheelchair and you can see her pink hat on the bottom of the picture. She is looking at all the colorful toys and things.


Here is a picture of the ferris wheels and other rides/vending areas from a distance. I took this picture as we were leaving the area where they keep the animals.

My Two Graduates

Here are my two graduates. Austin promoted (graduated) from 5th grade this morning. Here in AZ the students usually promote from 5th grade into middle school. Austin attended his class's promotion even though he is going to stay at his elementary school for 6th grade. Our elementary school has been offering 6th grade for only 2 years now. Brandon went to middle school for 6th grade. And speaking of Brandon, he promoted from middle school today and will be attending high school in August! I am so proud of my two sons who have done well in school this last year. Tonight Karl was telling me that two people from church were telling him what great kids these two boys are. One of the men that Karl was talking to is Austin's Sunday School teacher. He told Karl that Austin is very knowledgeable about the gospel and loves to participate in class. The other person Karl was visiting with is one of Brandon's leaders at church. He was telling Karl how much he enjoys having Brandon in his class and what a great sense of humor he has. One time the Deacons (12 & 13 yr old boys) were playing football as an activity and they wanted Brandon to do a button-hook. Brandon didn' know what that was so they had another one of the boys run out onto the field and show him. As this other young man started to turn he slipped and fell. Everyone started laughing (even the young man who fell). Then Brandon asks, "So what am I supposed to do after I fall?" More laughter! What a character!

Wish me luck now that school is out. I hope these boys don't kill each other or die of boredom. lol! They have to share a room - which is so messy I may have to get a back-hoe to clean it out. That's one of our big projects for the summer. To get rid of a lot of junk and get their room more organized.

Musical Monday

This week's song is dedicated to my friend, Elaina, who is mourning the loss of her sweet little boy, Kristopher. Hang in there sweetie. (((Hugs)))

Kenny Chesney- "Who You'd Be Today"

There was a Full Moon Out Tonight - but it wasn't in the sky!

That's right ladies and gentlemen, I witnessed a full moon right here on the ground and another amazing thing was that it wasn't even bright. Let me explain.

This sighting took place at a fancy schmancy event called "Remarkable Moms" which was hosted at Loews Ventana Canyon Resort. I was invited to attend and I could bring one guest so I took my hubby, Karl. We know one of the moms being honored at the event since we go to our Tu Nidito support group together. We arrived for the entertainment and cocktail hour which was out doors. The entertainment was a circus style act. After some juggling and other acts including stilt walkers, there was to be another type of entertainment up in the air. When we first arrived we saw a bunch of HUGE balloons that were attached to a ramada. Karl and I were near the balloons when 5 clowns started pulling the balloons down. We noticed that there was a harness and a clown with a guitar was trying to climb into the harness. I guess they needed help and a young man came over to assist them. They were all in a circle, facing inwards and helping the one clown into the harness while holding the gigantic balloons down. As the young man (not dressed as a clown) was reaching up and pulling on the harness, his light blue shirt went up and his pants went down a little ways... far enough that I was thinking "say no to crack" and "oh my word, that boy doesn't have any underwear on!" It was really noticeable since said young man was black and there was absolutely no whitie tidies under there! I nudged Karl and told him what was going on. As we looked over again the pants were going down further and two cameramen were moving in, taking photos. I was giggling and decided I had better not look any more. They finally got the clown into his harness and he was set to do his act. The young man in the light blue shirt managed to get his pants back up and was seen around the event several times. Fortunately he did not "perform" again. hehe... After the clown's act was over he got out of the harness and a young girl went up high into the air and did some acrobatics hanging from a long black strip of fabric. She was the best part of the act! Then it was time for us to go inside and have dinner.

We were seated at table 38 along with other couples that we know from our Tu Nidito support group. I also saw quite a few other people that I knew either from the hospital, the Tu Nidito staff or Tu Nidito volunteers. It was really great to see them all. Dinner was very... interesting. The salad was good and had a walnut vinaigrette. The desert was already at the table and was an apricot cheese cake. The dinner was a sirloin burger disguised as 3 meatballs on mini rolls. The veggies for the "sirloin burgers" were served in a cocktail glass with an olive pierced on top of a pickle, tomatoes and lettuce. What's funny is that the veggies were way too big for the mini burgers. Karl said, "So this is how the rich go to McDonald's!" in his best Robin Leach voice. I can't take that man anywhere! LOL

The circus-type performers continued to entertain us indoors while trying to burn the place down. They did several things with fire and there was so much smoke the doors were opened so that the sprinklers wouldn't go off. Fortunately our table was right by one of the doors so we knew we would be able to get out first, although the people in front are usually the ones who are crushed and trampled on when people panic. Good thing everything went well.

I couldn't help but get teary-eyed when they honored Marcia. Her daughter has leukemia and has gone through a lot of complications resulting from the radiation. She is such a sweetheart and I am so glad they honored her. 4 other moms were honored as well but I don't know them personally. Karl was saying to me as we walked the 1/2 mile back to our car that I should be honored. He said that I have taken care of an ill child for almost 19 years now and he thinks that I'm remarkable. Awwwww....... he gets extra points for that! I told him that he and my kids are my reward. I am so lucky to have him and my kids.

So back to the Full Moon sighting:
Moral of the story: Dude, if you have to wear the baggy pants that are so loose they will fall down well below your hips, BE SURE TO WEAR UNDERWEAR!!!!

Cooking

Austin is cooking dinner for the other scouts and their leaders.

Dad and Austin enjoying the meal.

End of Another School Year

Where, oh where has the time gone? I can't believe it's nearing the end of another school year. My kids have only 4 more days of school left. Well, technically, it's 3 1/2 days since my kids can come home early on the last day, May 24th.

Brandon will be "promoting" from 8th grade on Thursday. They don't call it "graduating" here. lol Whether it's called promotion or graduation, he is doing it! Today he received an award for Drama. I'm not surprised though, I definitely see enough DRAMA around here! hehe... Seriously though, he is a great kid and I am excited to see him succeeding in something he loves to do. He has come so far since being diagnosed with depression/anxiety when he was 7 yrs old and then ADD when he was 10.

Austin will be "promoting" from 5th grade. Unfortunately he and Brandon will be having their promotion ceremonies at the same time but at different locations so I have to choose which child's promotion to attend. Austin will actually be staying at the elementary school for 6th grade but Brandon will be entering High School so I will be going to Brandon's promotion. The Dad has court that he can't get out of otherwise one parent could have gone to each ceremony. Austin came home from school today with a trophy! I asked him what it was for and he said that it was for getting 90% or above on every test throughout the whole school year!
We are so proud of him! *wiping a tear from my eye*

Justen is still doing his own thing. He's working at Fry's grocery store, going to his young adults ward for church, taking a religion institute class and doing his service mission every Wednesday morning. Today he was outside helping his dad do "real work TM" shoveling dirt and moving it as we prepare for the big concrete pour.

Miss Jess had a bad night last night and didn't get to sleep until close to 4:00am. Poor kid was very emotional and not feeling well today. I suspect PMS is playing a part in her mood swings since we go through this type of thing every single month at approximately the same time before Aunt Flow comes to visit her. I just keep wondering, out of all the things that don't work in her body why does this one have to?! Not Fair I say! But as usual, I don't get to a whole lot of say in the matter. At any rate, I was able to be calm last night and didn't stress out too much. The Dad came home from work a little earlier than I expected and he said they sent him home since he already had 40 hours. So I caught an afternoon nap which I desperately needed. All in all, Jess has actually been doing fairly well the last couple of weeks. We are getting ready for her birthday party. She is going to be 19 years old on June 3rd! We are amazed. Miss Jess is having a Pirates of the Caribbean party. I will be taking her to school this coming week so she can see her friends and teachers and give them invitations to her party.


And that concludes the Jensen Family Update for this evening. Stay tuned for more excitement when we return next time to hear The Mom say, "When is school starting again? Not soon enough!"

Updates

First I have very good news about Gabriel.



This is from his blog:
"The surgery was a complete success and it looks hopeful that any future interventions would be performed in the cath lab and not the OR."
"Gabers is has been wide awake all morning, limbs flying everywhere. He is off the vent and breathing just fine on his own. He is down to just Tylenol for pain medication. Less than 24 hours after leaving the OR for Open Heart Surgery our kiddo is breathing on his own, off of the narcotics, and turning into a giant ruckus."

Yay! Gabe! Hope you can go home soon!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Somewhat good news:

The little girl that I mentioned in this post: Off Day and Prayer Request On May 1st is still hanging in there and is going home. She is still very ill and has lost a lot from this event. It is unsure how much she will be able to regain and what type of life she will lead but she is still fighting and her family is happy that she is able to leave the hospital and go home.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Very sad news:

Unfortunately I don't have as good of news of a little guy named Kristopher. Kris was born on March 8th with very severe heart defects and underwent heart surgery. He had many set backs including seizures and a brain bleed. Kristopher passed away on Mother's Day only 9 1/2 weeks old. Please keep his young parents in your prayers. This is a very sad time for them.

FIVE

Jessica has had FIVE heart surgeries.

This is a picture of Miss Jess when she was three years old post-surgery.
This was the hardest recovery of all.

First, a little background information about Miss Jess.
Jessica was diagnosed with pulmonary atresia/VSD when she was two weeks old. We were told that she had very narrow pulmonary arteries and that the heart was not directly connected to her lungs. Blood flows through a large hole between her two lower heart chambers, mixing both the oxygenated blood and the unoxygenated blood. Then the blood flows up the aorta to the body. Jessica grew some collaterals from the aorta out to the lungs and that's how she was getting blood from her heart to her lungs. Jessica was very ill and fragile so the doctors wanted her to take the heart meds to stabilize her and get her to put on a little bit of weight.

Jessica had surgery number ONE when she was five months old. The surgeon put in a shunt between her pulmonary artery and her aorta - forcing blood through the pulmonary artery in hopes that it would make the artery grow. A blood clot formed and went to her brain and Jessica suffered a stroke which weakened the right side of her body and affected her speech. She has to learn sign language in order to facilitate speech. She was very slow growing and we rejoiced at ever ounce she gained! She was delayed and didn't sit up until she was almost a year old and didn't walk until she was 2. She had OT, PT and Speech weekly for months! Pretty soon it was time for another surgery.

Jess was back in surgery just a month after her 3rd birthday.
During surgery number TWO the doctors accidentally cut the shunt and Jessica hemorrhaged out. She went 8 minutes without getting blood to her lungs and in turn no oxygen to the brain. Once she was on bypass the doctors were able to replace the shunt with a larger one... tucking it out of the way. The first shunt had been pushed into the sternum by Jessica's enlarged heart and that's how it ended up in the way and was cut. Jessica remained in the OR for hours bleeding out of control. Finally at 1:00 am we were told that she was stable enough to bring up to the ICU but she was in critical condition. She remained in the ICU for a couple of weeks experiencing more bleeding, seizures and a life-threatening blood infection. Several times she was not expected to make it. Once she was off the ventilator and was able to wake up we realized that her left side (previously her strong side) was paralyzed and she was blind. The CT scan showed 4 areas of her brain had been affected. Over a short period of time Jess regained enough vision to recognize us and was no longer terrified as she had been for several days (during which time we prayed and prayed... prayed that we would accept HIS will and that she would be comforted. HE gave her the eyesight. What a gift!) During this time is when the picture (above) was taken. It is one of two pictures that were ever taken of Jessica in ICU. I just couldn't bear to photograph her with all the tubes and wires, etc. I know that I will never forget and I didn't want pictures to remind me of how hard it was and how much she went through. Jessica had to relearn how to crawl, sit up, walk and all the other things we had struggled so hard to learn the first time. She had OT, PT and Speech again. She was very determined and regained almost all that was lost.

Surgery number THREE took place when Jessica was 5yrs old. The surgeons did what was a new surgery at the time called unifocalization of the collaterals on her right lung. Jessica suffered a pneumothorax post surgery but that resolved by it's self. Brandon was just 2 months old at that time! Thank goodness Jess did not suffer another stroke or hemorrhage.

Surgery number FOUR took place just 7 months later. The surgeons did the unifocaliazation of the collaterals on her left lung and they placed a conduit inbetween her right ventricle and pulmonary artery. The thought was that it would establish continuity between the heart and lungs and they would also be able to do a cath to measure the pressures in the pulmonary artery. Again Jess suffered a few complications but nothing as major as the prior strokes. Unfortunately this was when the surgeon came out and told us that looking at the pulmonary artery he could see that it has not grown. He felt she would never be able to have complete repair and went on to mumble something about most kids living off shunts like she has don't live past their mid-teens.... they either can't fight off an infection or they get too "blue" to survive. (meaning that's how they usually die.) He also mentioned that most kids haven't been through the strokes and hemorrhaging difficulties like her and how sorry he was that they couldn't do more. He mentioned transplant but said that Jessica would need both heart and lung transplant and with the severe difficulties she's had (strokes and bleeding), he felt that she wouldn't make it off the operating table - she would have lesions everywhere. We went home to cry. Cry and pray. Jessica came home about 8 days later. I cornered one of the pediatric cardiologists and asked him exactly how much time he thought we had left with Jessica. He had been avoiding this question and finally he looked me in the eye and said, "We never expected her to last this long, Mrs. Jensen." Since we almost lost Jess several times when she was 3 years old we were already feeling like we were living on borrowed time. So we called Make A Wish and she wanted a computer. We did some things as a family that we wanted to do. We were done. We were done with surgeries and done having children. I had been put on bed rest with my pregnancy with Brandon and I just couldn't take care of a dying child and be on bed rest again.... so we thought!

Surgery number FIVE took place almost a year after the fourth one. Jessica wasn't doing very well after the fourth surgery and I kept trying to tell the doctors that something was wrong. She seemed more "blue" and tired more easily. She was needing oxygen more often. Finally they decided to do a cath and find out what was going on. During the cath they found that the conduit that they had put in was causing more blood to back up into her right ventricle and she was in congestive heart failure big time! They had to either a) go in and close off the conduit or b) give comfort care - she was dying. The doctors left it up to Karl and myself. They were worried to subject her to another surgery and potentially causing another stroke or other complications. So we prayed again. We decided to do surgery ONLY if they promised not to open mid-line. She had been opened there 3 times already (the other surgery was under her right arm and around her back). She always had complications and it took months for her to get back to feeling ok post surgery. They agreed. She went in for her fifth surgery and they were able to go through two ribs to close off the conduit. Oh, did I mention I was 6 months pregnant with Austin when she had her last surgery? I don't think I will ever tell God what I can and can't go through again. ha! It was really something... but we did it and our sweet girl came home 5 days after surgery!

Now Jessica is about to turn 19 YEARS OLD!

What a miracle! We are so blessed.

For those who have asked, Jessica is still considered terminally ill. Her body is deteriorating and new problems are arising from the fact that her body is not able to get very much blood to her lungs, therefore not getting enough oxygen to her body. She is suffering from hypoxia. She is experiencing digestive problems, acid reflux, headaches, body aches, fatigue, depression, irritability, a lot of anxiety as well as other problems due to her body never having enough oxygen in the blood. Some things that I didn't mention here is that she is prone to developing blood clots but we can't put her on blood thinners because she also experiences hemoptysis (coughing up blood) due to the collaterals bursting and bleeding into the lungs. Fortunately the morphine therapy is keeping the hemoptysis under control. Jessica doesn't get out much but that doesn't stop her from enjoying her life as much as possible. She is at about the level of an 7 or 8 year old. She loves to color, trace pictures in coloring books, bead necklaces and bracelets, and play video games. She is a joy to everyone who meets her. She is so innocent and loves everyone. She is especially interested in animals (she has her own pet bunny - a netherland dwarf), she loves Disney Princesses, Lord of the Rings, Pirates of the Caribbean and Harry Potter. In fact, Jessica has written a book about a new character that she invented for Harry Potter... his long-lost twin sister, Mary. Of course a lot of the book rambles on and most of the spelling is wrong. On occasion you will see punctuation and random capitalizations but she wrote the book all by herself! And she kept up with it for 4 years until it was done. There are little drawings in there too. It is a book I will cherish forever. Jessica continues to amaze everyone. We don't know how much time we have left but we try to cherish each day. Each hug. Each smile. I try not to take anything for granted. Each day is a gift.

Yet Another Blog By Me

I really need to lose some weight and I need a place to keep track of my weight loss goals and such. So I added another blog solely for weight loss stuff. Feel free to visit it if you want but don't feel obligated to. It's mainly for my own benefit but if you are struggling with your weight and want to exchange ideas and goals... recipes... what have you... then come on over! I just set it up last night. Finding The ME Within

I have joined the May Day Weight Loss Challenge. If you want to join in too, click on the button below. I wrote my goals on my weight loss blog.

7 Random Things About Me

I got tagged by both June and Jennifer for this meme. Does that mean I have to do it twice? I don't know if I have 14 random things that I haven't already told about myself here on this blog. Jennifer says there are "rules" but June didn't mention anything about it... just random things so I'm going with June's tag. I'm not much of a rules person when it comes to being creative. Or lazy. lol

1. I had the leading role in "Oklahoma!" when I was a senior in High School.
2. I don't enjoy cooking very much.
3. I was in a motorcycle accident when I was 14 years old and broke my nose. I was pretty beat up and suffered from a concussion. I blame all my faults on that accident. lol A helmet saved my life.
4. I have always wanted to be a mom and have a large family
5.I met who was to be my future husband while on a date with his best friend. ooops!
6. I love being a stay-at-home mom.
7. I am the second oldest of 6 children but am the oldest girl.

Ok, now it's my turn to tag 7 other bloggers! Muwahahaha! I tag Jenny HaHa, Emily (I thought it might give you something to take your mind off Gabe's upcoming surgery), Julia, Karin, Christine, Rene and Chelle.

Of course if you want to do this meme and I didn't mention you by name then go to it! Just let me know so I can go and read it.

Please pray for Gabe

Please pray for Gabe who is going in for his 2nd heart surgery on May 15, 2007.

Monday Musical Madness

Just for fun I am posting two - count them one, TWO! Musical Monday songs. These are in honor of our crazy week last week when we caught one of Jessica's home health aides taking Jessica's morphine and then passing out while on duty.

This first song I thought of right away. My husband has busted people for drugs as a cop for years... never did we know that a drug addict would be caught in our own home!

ANOTHER ONE BITES THE DUST


And this song is one that Christine and Karin thought of... since the aide no longer has access to her client's morphine this song is for her. (Oh, I'm so bad!)

COLD TURKEY

Drug Addict Caught Red-Handed Stealing My Daughter's Morphine!

Just when you thought it was safe to read my blog something else happens. I can hardly believe it myself.

Long story short - we caught one of Jessica's home health aide stealing Jessica's morphine while one duty! Not only was she stealing it but she was DRINKING IT AND FALLING ASLEEP! What the hell would have happened to Jess if she had a crisis and her crazy aide was drugged out and not able to help her? Pardon my language but I'm quite upset. I start fuming every time I think about it. The morphine not only helps Jessica with her pain but it is what is keeping her lungs from bleeding and it's keeping her from dying right now. I keep getting flash-backs of those horrible months when Jessica was having lung bleeds frequently. I would sit with her in her room almost 24/7. She would start coughing up blood at any time. She would gasp for air and cry... looking at me with her big eyes full of fear. At night she would cry - no, wail - "I'm not ready to die!". The doctors all told us that there was nothing more they could do (after a series of tests) and a hospice team came to our home. They were the ones who recommended Lorazapam for the anxiety and morphine for the pain. Nobody knew that the morphine would help prevent the lung bleeds but it has! It is her lifeline! Jessica has only had two or three significant lung bleeds in the last 2 years! We are so very thankful for that. We rely on the morphine to keep Jessica's lungs stable and to help relieve the pain. How dare that girl steal that from my daughter for her own addiction?

We caught her on video tape Thursday. I called the nursing agency and got her butt fired. I also called the cops and gave them a copy of our video tape as proof and I wrote a report of my suspicions of this gal and logged the morphine usage all week. We may have to go to court. What's interesting is that she could be arrested on two misdemeanors and not felonies as Karl and his other cop buddies thought. I'm not sure when the police are going to arrest her. The officer that came and took our report and evidence called back and told us that he is handing the case over to a detective. We have copies of the video tape, my report and the case number.

My sweet, innocent daughter has no idea what has been going on. She would be devastated if she knew that anybody was taking her medicine. She is so innocent that she can't imagine anybody doing anything bad... well, except that "bad guys" who daddy takes to jail and are more imaginary than real to her. We haven't even told our sons what happened. No use them getting upset and feeling violated like Karl and I do.

Thursday evening I watched the video only up until the aide committed the crime. By the way, she took 25+ cc all at one time. The most we ever give Jessica is 5 cc. The aide is skinnier than Jessica so it's not like she has a lot of weight to help absorb the drug! She really was blasted out of her mind - while both Karl and I were gone. At least Brandon (13) and Austin (11) were home. So after getting home from work Karl decides to watch the rest of the tape to see if there are any other incidences (there's not). As he was watching it he says, "A crime IS being committed! THOSE BOYS ARE EATING US OUT OF HOUSE AND HOME!" hahaha! The rest of the tape shows Brandon and Austin going into the kitchen multiple times and getting food to eat. I knew it!

Here's the report I typed up and gave to the police officer when he came on Friday: (I've changed the name to protect the guilty... we'll just call her Miss Demeanor - lol)

Monday, April 30, 2007
I think someone has been getting into the morphine. I usually order one bottle that holds 500cc. I don't usually have to get a refill until more than 30 days later. Last time the pharmacy was 10 ccs short so we received 490ccs. I poured about 80 cc into a smaller morphine bottle - I take that bottle with me when I take Jess out somewhere just in case she needs a little bit. So that was around 90ccs less in that bottle than usual. We ran out of morphine sooner than normal. I thought about it and decided that it was because of the morphine I had taken from the bottle although it still seemed like I should have had more. I dismissed it and called the doctor’s office. The doctor has to hand write the prescription each time since it's a controlled substance. The doctor’s office told me that it was a little early to be ordering again; I told them what had happened and why we were ordering a little early. They said OK but that Jessica's primary care doctor was leaving the area and I need to get her into someone else ASAP because doctors don't like to write narcotics for other doctors.

The other day I noticed that the bottle was about half gone. I thought... gee, I don't think it should be gone that fast... I wonder if Karl accidentally spilled it and forgot to tell me about it. I usually give Jess her meds but sometimes Karl will give it to her when I'm gone and I was gone a couple of times during medicine time recently. So I just kind of filed that info in the back of my brain.

Today when I was getting Jessica's morphine ready I noticed that we only had 100 ccs left! Out of 500 ccs we had only 100 left. I checked the bottle and sure enough, it has only been 10 days since I filled it. How could we have used 400 cc in 10 days?

I started doing the figures.

Jessica usually gets 5 ccs at 9:00pm, 5 cc at 10:00pm and between 2.5cc – 5 cc at 1 or 2am (if needed). So at the most, Jessica gets 15 cc a night. On rare occasions she will need 2.5cc – 5 cc during the day. In order for Jessica to have used 400 cc in 10 days, she would have had to take 40 cc a day. That’s much more than her normal 10 – 20 (max). I know full well that she has only had 10 cc most days. So she most likely has only taken 100cc – 140cc in 10 days. So where did the other 260cc or more go?

I got to thinking about it. We have a fairly new home health aide who’s been with us a few months. She works here on Mon, Thur and Sat. What's interesting is that I don't remember how much morphine was in the bottle on Sunday but apparently when I saw it today (Monday) it shocked me how low we were - almost as if there was a big difference between last night and today. The new girl, Miss Demeanor, worked today. I started remembering that several times Miss Demeanor has been so sleepy while at work that she could hardly keep her eyes open. In fact, she has fallen asleep. I have woken her up and she has claimed to only be resting, not sleeping.

I start a morhpine log:

Monday night: April 30:
morphine level at exactly 100cc

May 1, 2007 (Tuesday)
Karl and I set up a hidden camera after discussing it at length. I am very worried that more morphine will go missing and Jessica will be out. We have an appointment with a new primary care doctor on Thursday. I hope I am able to get a new prescription for morphine without any problems. I’m not sure if I will have to explain why Jess needs more morphine again so soon. We decide to only video tape during the time that Miss Demeanor is here since we don’t suspect any of the other aides. A different aide works today so we don’t record the video. I check on the morphine numerous times. No morphine goes missing.

Morphine log:
Gave Jessica 5cc at 9:00pm
Gave Jessica 5 cc at 10:00pm
Morphine level at 90cc

May 2, 2007 (Wednesday)
Miss Demeanor does not work today so we do not record on video. I check the morphine numerous times throughout the day. No morphine goes missing.

Morphine log:
Gave Jessica 5cc at 9:00pm
Gave Jessica 5 cc at 10:00pm
Gave Jessica 2.5 cc at 2:00am
Morphine at about 77.50cc

May 3, 2007 (Thursday)
I take Jessica to see her new primary care doctor. Miss Demeanor is scheduled to work at 2:30pm. Karl starts the video recorder at about that time. Jessica and I get home at 2:54 and Miss Demeanor arrives at the same time.

On the video it shows that I make a phone call at 3:05. I call the pharmacy to see if they have enough morphine to fill the new prescription that the doctor had just written for me. The pharmacy asks what strength it is so I take out the white morphine bottle and read from it to the pharmacy. You can clearly see where I put the morphine bottle into the cupboard (the middle shelf) and it is a white bottle – the ONLY white bottle on that shelf. I then leave to go run errands and tell Jessica and Miss Demeanor that I will be gone for a few hours.

I came home after Miss Demeanor had left. I looked into the cupboard and the morphine bottle had been moved. I checked the morphine level right away and it was at about 50cc. I just stood there in shock! About 25 cc was missing! So I turned off the video tape recorder and took the player into my bedroom to see what had transpired.

Here is what I found:

At 3:49 Miss Demeanor turns off the lights in the kitchen. She then looks around, reaches into the cupboard and picks up the morphine bottle…. looks at it and puts it back. She then walks over to where the dining table light switch is and turns off the light over the dining table and looks into that room as she passes in front of the video camera. She comes back into the kitchen a few minutes later and at 3:52 prepares some food for Jessica.

At 3:53 after getting out some paper towels and placing the food into the microwave, Miss Demeanor takes the morphine out of the cupboard and pours it into something. She takes it into the hallway and lifts her arm and tilts her head back as she is walking away as if she is drinking it. (We have medicine cups that hold up to 30cc. We suspect that Miss Demeanor used that to pour the morphine into)

Later tonight Jessica tells me that she hopes that Miss Demeanor made it home ok. I ask her what she means by that and she said that Miss Demeanor’s eyes were bothering her. I asked her if Miss Demeanor was rubbing her eyes and Jessica says no. I asked her what Miss Demeanor was doing with her eyes and she shows me that her eyes are closed. Jessica tells me that Miss Demeanor said that her contacts are bothering her and she is keeping them wet by keeping her eyes closed. I asked Jessica if Miss Demeanor fell asleep and she said yes. Jessica started talking about her favorite show, Avatar. She said that Avatar comes on at 4:30. I asked her if Miss Demeanor was asleep when Avatar was on and she said yes. I tried to find out how long Miss Demeanor was asleep and Jessica didn’t know.

As you can see I have been so worried all week about the morphine. What if too much disappears and I can't get more for Jessica? What if the new doctor won't prescribe it for her so soon? What if the pharmacy won't fill it again so soon or if the insurance company won't cover it? What if Jess has to go through withdrawal and ends up in too much pain without it or the lung bleeds start again? What if we don't catch her (Miss Demeanor) in the act and we have to keep letting her come back into our house knowing she is most likely the one taking it? What if she finds the video camera? (Karl did an awesome job setting it up though!) Or worse... what if it is one of our own children taking it?

Other stresses have been what if we don't like the new primary care doctor? Fortunately he seems to be pretty good. We'll just have to see how he handles a crisis. I've also had to get ready for a CM workshop that I host and I haven't been feeling well. (Did I mention that we had the concrete poured for my craft room this week too?) And of course my sons have had scouts, school, reports, work, oldest son not putting the oil into the pick-up (that he uses) and it was dry, and a zillion other stresses that most households with 4 kids deal with on a daily basis.... including the teasing and crying and yelling. (that was for you, Mel) lol

Pray that my family and I are able to have a peaceful week!

Blogging Against Disablism Day 2007

Today is Blogging Against Disablism Day. (well, technically it was yesterday - but I haven't gone to bed yet so that qualifies as today, right?) I have been thinking of what to write. So many things came to mind that I could write about my daughter. She is so unique and has so many different special needs that she doesn't fit into one particular category. Since I post so much about her, I decided to write about a boy that I grew up with who had Down Syndrome. I'm not mentioning his name since I didn't get a chance to talk to his family yet, but I just have to write about him. He was such an inspirational person and his parents were amazing with him. This boy and this family helped prepare me for my daughter. I believe with all my heart that God had a hand in it. HE knew I would have a daughter with many medical difficulties along with mental and emotional trials. I was raised knowing that each and every person is important. God loves every single one of his children. Our "disabled" are in fact our teachers. Here is a tribute to my friend:

I was raised in Mexico in an area where they didn't have a special education program for children with disabilities. They didn't have the medical facilities nor the money to provide such. I was fortunate enough to know a family who's son had Down Syndrome. The parents did not institutionalize him as the doctors recommended. They kept him at home and did the best they could to care for him. They loved him. They brought him to church and allowed him to be active in the community. He could walk, ride a bike, swim, smile, laugh and hug. Boy could he hug! I received many of those strong hugs. He wasn't verbal in the sense that you could understand him very well but he could understand some of the things you said to him. When going to his house he could understand whether you wanted to see his mom or dad. He would ride his bike to the corner store and purchase candy and snacks. His parents had set up an account for him and he was allotted a certain amount of treats a day. We lived in a farming community and this young man's dad took him along to work. His dad took him everywhere. In fact, I don't even recall seeing the father with the son.

One time a field caught fire and this boy was missing. The community gathered together to fight the fire and find the boy. He was found safe and I believe he was unaware of any danger. I still remember the relief I felt when I found out he was safe. I worried about him. I didn't know if he would understand the danger or if he would know how to get away from the fire. Would he become disoriented? Would he be afraid? What a relief that he was safe. Safe and loved.

This boy was a few years older than I but he had two cousins who were my age and so the boy attended church classes and activities with us. I don't recall exactly how old I was when this special young man died but I do remember that our age group was asked to sing at his funeral. We sang a song called: Families Can Be Together Forever. We were honored to sing at the funeral and we sang with all our hearts, with tears in our eyes and on our cheeks. One thing that impressed me the most was how many people this young man had touched in his short life. The chapel was full of mourners so they opened the over-flow area. That quickly filled up so the back cultural hall was opened. There was standing room only as people filled that area and both of the foyers were full as well. As I stood and sang with my friends in front of all those people I knew that this was a very special boy. I was so fortunate to know him and his family.

One boy with Down Syndrome touched so many lives. One family who wouldn't listen to the "experts" and kept their beautiful son at home and loved him. One community who didn't see this boy's disabilities - only his abilities. How I wish every community, every family and every child with a disability could live this way.

Off Day... and Prayer Request

Today was kind of .... interesting. I didn't get much sleep last night and had to get up earlier than normal to take Brandon to school. When I got home Jess got up and wasn't feeling well. I was able to get a nap in later but I've been having a few tummy issues today. So many things have come up and makes me wonder why people can't do their jobs right. I have a list of people I have to call tomorrow including SSI - they messed up Jessica's check this month. The credit union where we bank has messed up so I have to go in and get $25 back and have them change something on an account that we already went in to set up but the one lady didn't know that we had to sign a form. It is her job to know that. durrr.... some other things have come up but I won't go into details about all that.

Jessica's primary care doctor is leaving - which is fine by me since she "punted" us to urgent care when Jess was having a lung bleed recently. We were basically told that she couldn't be bothered with it. So anyway, Jess has an appointment with a new primary care doctor this Thursday. He is a friend of one of the pediatric cardiologists here and the peds cardiology nurse told me that a few of their teenage patients go to him. So... I'm really hoping that it works out! Please pray that this doctor is kind, compassionate and able to deal with such a medically involved patient as Jess... and who is willing to spend the time necessary to care for her many needs.

On a sad note, a friend of mine who lives in Ohio called me to tell me that her daughter is suffering from a brain bleed and isn't expected to live long. The daughter has a lot of medical issues and has been through so much. Please pray for this family and for the little girl. I don't want to mention names without their permission but I know that God knows who they are. I hope they are comforted and that the little girl doesn't suffer and enters God's arms peacefully.

I also wanted to add that we have met this little girl in person. Her, her parents and brother came here to our area last year so we invited them to come to our house. We spent a couple of hours together. We first met through an online support group for families with children with congenital heart defects. It's amazing how close we can get to someone that we've never met in person but this little girl we have met... and she will be missed.

Rare

Here is a picture of Jessica and her friend, Tanya. Tanya and Jess have been friends for quite a few years. Tanya moved away a few years ago and it's a RARE occasion that these girls get to see each other. Tanya's sister had a baby so Tanya and her mom came into town this weekend to see the new baby. They stopped by and visited us, too. It was really good to see our friends again!

Pokemon Philosophy

Jessica got her new Pokemon Diamond game for the nintendo DS today. She has been wandering around capturing pokemon on the game most of the day. This evening she showed me that one pokemon that she captured has evolved already.


It looks like a beaver.

She said, "Mom, do you know what "evolve" in Japanese means?"

Not knowing any Japanese I said no.

Jess: "It means to me the same as what we do in our lives. We start out as babies and as we get older we learn and grow and change, just like Pokemon do."

I realized that she was thinking that the word "evolve" was a Japaneses word. lol... I didn't correct her, I just listened to her deep philosophical thoughts.

Jess continues: "So we are like Pokemon because we change too. Huh, Mom?" Of course I agreed.

I have been trying to teach Jessica this very concept for a very long time. You see, she is "stuck" at about a 7 to 8 year old level. I'm not saying that she can't learn but she seems to forget what she learns and she is too ill to go to school very often so academically she isn't progressing very rapidly. I could help her more at home but I have decided to not push academics onto her and let her enjoy her life. We do things together and I take opportunities to help her but I don't set a time frame for her to do certain work like homeschooling moms do. She doesn't need to stress out about school work when her body is struggling to just survive. Also, another interesting thing, is that emotionally she seems to have digressed in the last few years instead of progressing. She cries very easily, gets her feelings hurt, throws a few temper tantrums, gets scared of the dark and other behaviors that I thought she had once outgrown. (yes, I know that teenagers throw temper tantrums too but the way she carries on is the same as when she was much younger. Her pediatric cardiologist said, "She handles herself like a pediatric patient." I thought that was a very good way of describing her. She is very innocent and sensitive. I wouldn't want her any other way, really. But one thing that she has noticed is that a lot of her friends have gone on and left her in their dust so-to-speak. Most of her friends from church who are her age are away at college and/or have jobs. Jessica prefers to play with her barbies and play her pokemon games. Even other special ed kids have graduated and have part time jobs in the community. One of Jessica's special ed teachers left the school last year to take a different job and the other main special ed teacher is retiring this year. There are only a handful of people at the high school who she really knows well anymore. I wonder how long it will be until Jess decides she doesn't want to go to school anymore.... it's not as if she goes very often anyway. Jessica's pediatrician is retiring - long story short- we had to leave him a year ago and find another primary care doctor (who pales in comparison and we miss the pediatrician so much!). Even Jessica's brothers are growing and progressing. Brandon doesn't like to play with the action figures at all anymore and Austin will still play with her sometimes. Justen is working, driving and even going to his own ward for church that is suited for the young adults.

Everyone and everything is changing around her and she doesn't understand it.... until maybe... just maybe... today.

My dad taught me that the only constant in life is change.

Hopefully the Pokemon can teach Jessica the same thing.