Friday, December 29, 2006

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!

Saturday, December 23, 2006


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!

Friday, December 22, 2006

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.

Thursday, December 21, 2006

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!

Wednesday, December 13, 2006

Woody Board and Geppetto Brandon

Here is a visual story of Brandon and his friend Woody Board.

Geppetto Brandon making his own wooden boy. He names him Woody Board.

Geppetto Brandon is happy with his creation. Woody is concerned because he can't seem to find his arms and hands.

Geppetto Brandon seems upset. What did you say to him Woody?

Woody wonders if he should be concerned? Is this a new place for timeout? What happened to just standing in the corner?

Woody smells something different. He wonders if he passed gas.

Now Woody is feeling a little warm. What is that smell? It's getting stronger.

Woody is starting to get concerned. He wonders if Pinocchio ever had to deal with this type of situation.

Woody notices that the cage doors are now closed. He knows now that there is no escape.

Woody was a real hero - he gave his life to give our family warmth.
Ignore the boy in the t-shirt and shorts. It really WAS COLD that day.

Tuesday, December 12, 2006

ToF/PA Jessica's heart defects: description of them and explanation of her surgeries

I received this email on one of the heart support groups I belong to. ToF/PA is: Tetrology of Fallot and Pulmonary Atresia. I thought I would post my answer to this email here since it explains what Jessica's heart defects are and what surgically has been done to help her. I also put down some of the major complications that occured during or after each surgery. I spent quite a bit of time writting it and I appologize for any spelling or grammar mistakes... it is 2:45am afterall! It's a bit of a long read but well worth it - every time I explain to someone everything that Jess has wrong and all the surgeries she's had - and especially the complications she's gone through and how she has RECOVERED from them... it helps rekindle my faith in God that He loves her and He is granting her life - the doctors sure don't have any other explanation that she's still alive! ;-)

The question was:
---Anyone here have child with TOF/PA and the pulmonary artery AND the
pulmonary valve are absent?
What did they do for the child and WHO did it?


Jessica! How could you forget, Karin? lol!

The Pulmonary Artery is supposed to be shaped basically like a T. The top piece of the artery goes to each lung and then the lower part reaches down to the right ventricle. Jessica is missing the part that reaches down to the right ventricle of the heart - therefore there is absolutely no direct connection between the heart and lungs - therefore no valve either. Jessica has a huge VSD so the blood that would normally go up the pulmonary artery to the lungs goes through the VSD and mixes with the blood in the left ventricle and up through the Aorta. Part of the ToF is an over-riding Aorta meaning it sits right on top of the VSD. Sometimes there is also an ASD present but we never found one with Jess. Anyway, there are usually a lot of collaterals or MAPCAS (not sure exactly what that stands for) that come off the Aorta and go directly to the lungs. The blood that gets to the lungs is mixed (oxygenated and unoxygenated) as well as the blood that gets out to the body. That's why they are cyanotic. Another thing that has been a major problem with Jessica is that the piece of PA that reaches from lung to lung is extremely narrow and stiff - more like a vein than an artery. Also, Jessica's piece of pulmonary artery branches out to only 1/3 of each of her lungs. The collaterals from the aorta provide the rest of the 2/3 of each lung.

Here is what they have done for her (or TO her - depending on my mood)
First heart surgery (when she was 5 months old - they waited because she was so sickly and weak they wanted her to gain some weight in order to survive surgery):
A central shunt was placed between her Right Ventricle and Aorta. This gets blood flowing through that piece of pulmonary artery where it had none. This helps get more blood to the lungs and the hope if that if blood is flowing through it, it will grow (if it is too small - like Jessica's). Complications: blood clot went to speech area of brain causing right-sided weakness and much difficulty learning to speak... she learned sign language when she was 18 months old and later learned to talk. She regained strength on her right side with therapy too.

Second heart surgery (when she was 3 years old):
They replaced the shunt. The feeling was that she had out-grown the first shunt and her piece of PA that goes from lung to lung was still too small to handle complete repair). Complications: The original central shunt had fused into her sternum and it was cut when they opened midline. She hemorrhaged from the site so no blood was getting to the lungs at all. She went between 7 - 8 minutes without getting oxygen to her brain while they finished opening and placed her on bypass. During that time all the scar tissue in the area bled too and she hemorrhaged for several days - nobody expected her to survive. Later when she was finally extubated, she was blind, had gaze paralysis (her eyes were stuck towards the right) and her left side (formally her stronger side) was paralyzed. Fortunately as the swelling went down in her brain she regained most of her eyesight and with therapy she re-learned how to roll over, sit, talk, crawl and walk. She also developed a blood infection that had to be treated with IV antibiotics. Very, very difficult times.

When Jess was almost 5 years old we were told that if she were to ever have complete repair we needed to consider some new alternatives. Since Jessica's pulmonary artery didn't branch out to all of the lungs if they did complete repair, she would only have the use of 1/3 of each lung. So here's how things followed:

Third heart surgery (when she was 5 years old - and I had a 2 month old baby):
Unifocalization of the collaterals on the right side. At the time this was a new thing. Remember that Jess has collaterals coming from the Aorta and go directly to the lungs. What they did was opened Jess on the right side under her arm and take the collaterals that were connected to her right lung - disconnect them from the aorta, sew them together and attach them to her piece of pulmonary artery (that goes from lung to lung). Now the collaterals go from the piece of pulmonary artery to the lungs, providing her with pulmonary artery branches of sorts. Complications: nemothorax - air bubble pressing on her lung causing it to collapse. After awhile it resolved itself but was very scary.

Fourth heart surgery (7 months later just after Jess turned 6 yrs old):
Unifocalization of the collaterals on the left side and placement of a conduit between her right ventricle and piece of pulmonary artery. The PCs and the surgeon really debated as to whether to put a valve in the conduit or not. The cath suggested that the existing piece of pulmonary artery would not handle a valve. There had also been a case similar to Jessica's where they had placed a valve in the patient and he crashed post-surgery. This had been in another state and they told me that the boy was rushed back into surgery and they had to do emergency repair. Fortunately his pulmonary arteries were large enough to handle all the bloodflow and he was ok. They KNEW that Jessica's would not handle all the bloodflow just yet so they finally decided not to put in a valve.

This was the surgery when the came out and told us that her pulmonary artery (the piece that goes from lung to lung) had not grown and that she would never receive complete repair. They went on to mention that most kids who live off of shunts like Jessica don't usually live past their mid-teens. They either get an infection they are too weak to fight off or they get too "blue" to survive. (extremely difficult news to digest)

Fifth heart surgery (1 year later - and I was 6 months pregnant! ugh):
The conduit that was placed between the RV and PA was acting as a vacuum and causing the blood to accumulate into the RV of the heart. Jess was dying. The PC and surgeon argued in front of Karl and I about whether to replace the conduit with one with a valve or to take down the conduit or whether to even do surgery or not. After much discussion and reviewing her cath, the surgeon called us at home and said that he felt he should take it down or not even do surgery at all since she had suffered strokes and many other complications. He left it up to Karl and I to decide whether to even do surgery or not. We decided to take down the conduit to help increase her quality of life and hopefully give her more time. Complications: As they were putting in the line in her neck, the artery tore - just like a run in a stocking is what they told us. They had to stitch it up and place another line in the artery in her left side. We worried for a couple of days as to whether she had an aneurysm there or even a bloodclot inside the artery waiting to break off and go to her brain (remember, we've been through that before). Fortunately neither was the case! Also, after surgery Jess was vomiting and they had to keep her intubated an extra day in case she inhaled anything... they could easily suction out her lungs if she was intubated. I was hormonal and not a happy camper. Fortunately she recovered very quickly once she was extubated.

So.... in conclusion, Miss Jess STILL had ToF and PA. We were told that if Jess had been born just 5 years earlier she would have been deemed inoperable and she would have died before her first birthday (according to her CT surgeon and PC). Amazing, isn't it?

We have discussed at length the possibility of a heart/lung transplant. The surgeon doesn't feel that she would make it off the operating table with her history of bleeding and she would have lesions everywhere. Karl and I have never felt comfortable with a heart/lung transplant but we discussed it anyway. Don't get me wrong, we are not against transplants, we just have not felt that Jessica would survive such a surgery and we don't want to be the ones deciding when Jessica dies - God can have that job - and He has blessed us so much more time than we ever expected.

Sorry this was so long, but you asked for it! lol. Now Karin, if you are passing on this information to new heart parents, please take out all the complications, ok?! No need scaring someone 1/2 to death! lol Also remember that the techniques have greatly improved since Jess was born EIGHTEEN years ago!

Here is a site that has a picture of pulmonary atresia. If you run your curser over the picture, it shows you what a normal heart looks like. With Jessica the bottom part of the T shapped pulmonary artery does not even exist.
She also has Tetrology of Fallot Her combination of defects is rare enough that I have not found any websites that have them together. If anyone knows of one, PLEASE let me know about it, ok? I would love to see it!

Tuesday, December 05, 2006

Jessica's Endoscopy went well

We are home! Miss Jess did such a great job with the endoscopy and everyone at the hospital were great! They let Karl and I back into the procedure room while they got her hooked up to the monitors and the IV in. They wanted us to leave and Jess started to cry... I asked them if they had given her anything to make her sleep yet and they said no. They were kind enough to put some versed through her IV and get her more comfortable before making us leave. Jessica had traced a picture for the Dr. and his nurse and gave it to them before she was put to sleep. She is so sweet. Everyone in pre-op and in recovery were telling her what a good patient she is and how they wished every patient was as good as her.

The GI doctor told us that Jessica's stomach is inflamed. She has gastritis and multiple ulcerations. Apparently the Prevacid that she's been taking twice a day hasn't done anything to relieve it. Poor baby! No wonder she has been in so much pain. The good news is that we have a new prescription to help coat the stomach and heal the ulcers. It has to be taken 4 times a day but I'll do anything to help her feel better. The doctor also took several biopsies and we should have those results back in about 3 days. He said that her upper intestines look good and so does her esophagus but he took biopsies of those too just to make sure.

What a relief that there is something that we can do to help her! It will take awhile for the new medication to work and we need to wean her off the prevacid but hopefully before long she will be feeling a lot better.

Jessica and Karl are watching the new movie: "Pirates of the Caribbean - Dead Man's Chest" right now. Austin and Brandon will be home soon and I am going to have a nap! :-)

Thanks to everyone who sent emails of support. I was feeling quite emotional since finding out from the neurologist that we can't do anything to help her headaches (which can be severe at times). I am so relieved that we can actually do something to help make Jess more comfortable... at least I hope it works.

Sunday, December 03, 2006

Update on Miss Jess

Jessica has been hanging in there and dealing with both tummy pain and headaches.

First I'll tell you about our saga with the tummy pain issues. Jessica is going to have an endoscopy on Tuesday. We go to pre-op Monday afternoon to make sure that anesthesia knows what they are dealing with... I mean, WHO they are dealing with. Actually, the peds cardiologist suggested that they look at her chart to see what exactly they used two years ago when she had her cath and bronchoscope since she did very well with the anesthesia back then. Jess has been quite worried about being intubated so talking to anesthesia on Monday will probably help. Fortunately the new movie, "Pirates of the Caribbean ~ Dead Man's Chest" comes out on DVD that day and I told her that if she does a good job for the endoscopy, we'll buy the movie and watch it together that night. (We saw the movie in the theater last summer while Karl and the boys were in WA and we loved it!) We expect to be home Tuesday evening - save nothing goes wrong. So what does the GI doctor expect to find? Possibly nothing. All these issues may be due to lack of oxygen to her GI tract. We are already doing everything we can for that. If they find something then we will deal with it and hopefully it will be something that we can treat. Tummy pains aren't fun.

We finally got in to see the neurologist this last week and he pretty much said what I expected. After all the questions and the exam he thinks that Jessica's headaches are mostly due to chronic hypoxia (lack of oxygen). He also said that sometimes Jessica's heart may not be able to pump the blood against gravity and up to her brain so that may be why she is having sudden dizzy and weakness spells. There is a possibility that she could be having Transient Ischemic Attacks (TIA) or tiny bloodclots going to the brain. Jessica's blood is thicker than normal due to lack of oxygen so blood clots could be forming. She used to take aspirin therapy to help prevent bloodclots but since she started having the lung bleeds, we've had to stop the aspirin and any other blood thinner. Unfortunately, the way to treat TIAs are to give blood thinners. Another possibility for her headaches are migraines. I personally feel she has had 3 migraines. I've had to give her Tylenol and morphine and convince her to sleep it off. That has helped. We aren't able to give her any of the traditional anti-migraine medications because these can cause the blood vessels to contract and we do not need to be messing around with her already unstable cardiovascular system. So... even if she is having TIAs or migraines there's nothing that can safely be done to relieve these issues. Frankly, I'm getting quite tired of hearing "there's nothing we can do". But I digress. The peds neurologist was very cute with Jess. He listened to her as she showed him her book she's writing about her character, Mary Potter (Harry's long-lost twin sister). When he found out "Mary" is in slytherin he said, "you are pure evil" and continued to tease her about her being in slytherin. She loved the attention. After awhile I mentioned to the doctor, "I think you now know why the peds cardiologist wanted her to be seen by a PEDIATRIC neurologist" and he nodded and smiled. It was quite interesting when we first got there and the nurse came in to take the medication list... Jessica jumped in and said that she could remember the names of some of the meds. So she started to list the names and I would give the doses. After about 5 she said, "WE don't remember the other ones." The nurse stood up and then said to me, "when you get the list, just call me and let me know." I had to tell her that I DO remember the other meds and that I can tell them to her now. LOL! Jess kind of got upset and said that she did her best to remember so I told her that she did a really good job. She kept interrupting me as I was trying to give the rest of the meds list to the nurse and I had to tell her that it's mommy's turn to talk. A couple of times when the doctor was talking to us and was suggesting things that she should do when she has a headache, I had to ask Jess if she was listening and no, she had no idea what the doctor was talking about. lol! She really is still a little girl. One of the suggestions was for her to lay flat so that her heart can pump the blood to her brain more easily. The problem is that she isn't able to breathe well laying flat - hence the hospital bed in her room. *sigh* The doctor also mentioned that we could do an MRI to see if she is having TIAs but didn't know if we really wanted to do it since we couldn't do anything for her if she was having them. He asked me what we would do with that information and I said, "worry more." He nodded and agreed. Well, when Jess heard MRI, she jumped in and started saying how she can do it and she wants to do it... she can listen to music and she really wants to do it. Finally I figured out what she was thinking so I asked her if she was worried that she might have what Marcus has. She got quiet and choked back some tears as she said "yes". I told the doctor about Jessica's cousin's brain tumor and her concerns. He tried to tell her that by the exam he just did he is able to recognize a brain tumor and she doesn't have one. She sighed very loudly but still insisted on doing an MRI. So... I guess we will be doing an MRI sometime soon. The doctor said that if it helps her not to worry then it is worth it. I agree - I just hope that the information doesn't make me worry more.

Happy Holidays

HAPPY HOLIDAYS! Hope you all are enjoying the holiday season. We had a nice Thanksgiving at our house. Karl had to work in the afternoon so we had our meal at noon. My sister, her family and my brother and his family came over. We even had both sets of grandparents here. The weather was so nice some of us ate out in the gazebo and children played outside. Sorry to brag for all of you who were freezing on Thanksgiving day. lol

I wasn't able to take many pictures since I was busy in the kitchen most of the time, but here are some pictures from Thanksgiving.

Jessica with Uncle Chuy and cousin Jesse who both shaved their heads in honor of Marcus.

Jessica playing barbies with cousin Natalie. Mary the bunny is in the cage behind Natalie.

Aunt Alice and her daughter, Julie, playing my new piano.

Grandpa Taylor and cousin Stuart


Congrats to my friend, Susan, whose daughter-in-law just had a baby girl yesterday. Now can I call you granny? hehehe...

Of course congratulations to the proud parents. The mom had a long, painful labor and ended up having a c-section. Praying she gets some rest and recovers quickly.

What a wonderful early Christmas gift - a precious new baby! :-)

Wednesday, November 15, 2006

Bald IS Beautiful - update on my nephew, Marcus

Below I'll copy and paste what my sister wrote about the head shaving party held in honor of her son, Marcus. I'm posting some awesome pictures of the event! I am so glad that Marcus is doing so well and that so many people care about him and his family. The following pictures are 1) Many of the kids/teens who came to support Marcus in a head-shaving party. 2)top left to right: Mr. Dave Clark (school councelor), Kyle, Jeremy, Mr. Bob Henke (Vice-Principal) bottom L-R: Drew, Marcus and Trevor - all giving their meanest looks. 3)Marcus, Uncle Brian, Cousin Jenni (who donated her time and efforts to do all the shaving), Cousin Kevin, John (Marcus's dad), brothers: Noah, Aaron and Jackson. Karin - Marcus's mom doesn't seem to appear in any pictures - she was the photographer. :-)

"November 11, 2006

Wow! What a week we had! Wednesday we went to all the dr.'s and everything is looking good. Marcus has been pretty tired, and only went to 2 days of school this week, but he had a lot going on as well. After the long day at appointments we came home, had dinner then ran off to the Salon. My cousin, Jenni, volunteered to shave anyone that wanted it. So we met at her her Salon. What we didn't expect was that we had 22 people lined up to shave their heads along with Marcus, PLUS we had 20 girls there to help cheer on the boys, PLUS Marcus's school councelor and the VICE-PRICIPAL showed up to shave their heads as well, along with 2 brothers,an Uncle and a cousin. That place was so crowded, but it was a sight to see. When each boy got in the chair, all the girls ran over and ran their fingers through it for the last time. As soon as his turn was done, everyone would cheer loudly. I couldn't believe that one boy shaved off 5 inches of hair that took him 3 years to grow out plus it was soft and curly! When he went up for his turn, the girls took turns with scissors cutting curls off wishing they had his hair. It was just amazing. After it was all said and done, a co-worker of John's called a reporter for the local newspaper and now they are working on a story for monday. We tried to get everyone here for the photogragher, but we only ended up with 13 bald heads. It has been such an emotional support for Marcus that he hates to wear his beanie hat now. He is proud to be a part of his marching band buddies who all had to face snow the next morning... YIKES. " - - - written by Karen Russell

Here is the link to the news article: BALD IS BEAUTIFUL

The following are pictures of: 1)Marcus before - his hair was coming out in handfulls so he knew it was time for a shave! Then the picture of 2)Marcus After. He looks even more handsome afterwards! 3) John before the shave (Marcus's dad with a very nervous look on his face and his sons giving him bunny ears). 4) Marcus shaving his dad's head - looks like he is having a good time doing it too! 5) John afterwards. What a neat dad he is!

To read more updates and see more pictures feel free to go to Carepages name: MarcusRussell

Friday, November 10, 2006

Heart Specialist - oh really???

Heart Specialist

EDIT: This video has been removed at the request of copyright owner Sony Electronics, Inc. because its content was used without permission

This commercial annoys me on so many levels. First of all, being born with half a heart is a very real and serious heart birth defect. I know several families who have children born with HLHS (hypoplastic left heart syndrome)through my online CHD (congenital heart defects) groups. If it's not bad enough that the commercial makes light of being born with "half a heart", the commercial continues with the doctor having been born with 2 hearts! Wow, how convenient. THEN... she does open-heart surgery on this guy - on the sidewalk, in the rain - the man wakes up in the ambulance to see a heart-shaped scar on his chest. Oh puhlease! Then he asks the doctor what she did with the other half of her extra heart and there's a little "orphan savant" boy with a heart shaped scar on his chest and he calls the man (who just had heart surgery) "papa'". If the man is his dad then he isn't an orphan afterall, right? Another thing, if the doctor gave the man 1/2 of her extra heart and then gave the other 1/2 to the boy... why doesn't she have a scar on her chest? How did she do the heart surgery on herself? Oh wait... maybe she kept the extra heart in her pocket just for emergencies just like this one.

My daughter has had 5 heart surgeries and I just checked... nope.. not one scar in the shape of a heart. Silly us taking her to the hospital for her heart surgeries when we could have just had a stranger perform it on the sidewalk, in the rain, without anesthesia or ventilation, etc. Can you imagine the money we could have saved not staying in PICU for weeks at a time?

I also noticed near the beginning of the commercial they clicked on "ending for women". Does Sony really think women are that dumb?

I welcome any thoughts and opinions. (but no spam)

I don't care for statistics.

I've been thinking about statistics and how they are really just averages. But as I was thinking about the many times since Jessica was born that we have been given statistics - we are always in the small percentage. Here's what I was contemplating:

If I remember the statistics correctly, Jessica had a 2% chance of being born with any birth defect, 1% of which was CHD (again, I'm not sure of the exact statistic here). She was born with a complex CHD.

When Jessica had her first heart surgery at the age of 5 months old, we were told she only had about a 2 or 3% chance of having any complications with her surgery - it was a very routine placement of a shunt. Jessica had a stroke which affected her speech area of the brain and the right side of her body. She had to have on-going therapy to regain strength in her right side and we used sign language to facilitate speech.

As Jess got older the peds neurologist didn't think Jessica had a very high chance of learning to speak. (we weren't given a specific % but weren't given much hope) Jessica was 2 yrs old and could pretty much only say "mama" and "dada" but could sign over 80 words. We were told that her primary way of communication would be sign language. Well.... by the time she was 3 yrs old she was talking pretty well - and NONSTOP (still)!

When Jess was 3 yrs old she needed her shunt replaced. We were quoted the 2 - 3% chance of her having any complications and I reminded them that she already had a stroke. We were told that it didn't really put her at higher risk. This time she not only stroked but hemorrhaged for 4 days! She wasn't expected to survive the day on the 4th day and we were told to come and spend her last hours with her. By the afternoon the CT surgeon told us that "A power far greater than ours saved your daughter today - - we just stood here and watched a miracle". She was pulling through. Almost a week later she was off the vent and when she woke up we found she was blind and paralyzed on her left side. Long story short: the neuro-ophthalmologist didn't give her much of a chance of seeing again since the damage was done on the brain - not the eyes. She sure showed him! Yes, she wears glasses and her vision isn't perfect, but she can SEE! hehe... Of course she had a high chance of never learning to walk again... but she did! (she is in the motorized wheelchair to conserve energy).

Jump ahead (through many other miraculous, though difficult times) to 2004 when Jess was admitted into home hospice because of lung bleeds. Less than 10% of hospice patients come out alive (or improve and don't need hospice again... at least not for a long time). You guessed it, Jess improved and has been out of hospice for over a year.

Jess has out-lived everyone's expectations - including mine. She has suffered many more problems than anyone imagined but has come through like nobody ever expected possible.

The last visit to the Peds Cardiologist he said, "I have given up trying to predict what Jessica is going to do. Many times she takes the hard road but then turns around and comes through.

Tuesday, November 07, 2006


Sunday, November 05, 2006

Ron Taylor: My Dad.

Remember the post I made: "Who in the World?" with this picture:

Yes, that was my dad when he was in college. My parents came to town and my mom brought some other pictures of my dad for me to post here. He wasn't 100% goofy... at least not ALL the time. ;-)

The following photos were of him as a toddler, a more serious one when he was in college and then one of him and my mom that was taken in recent years. I'll have to look through my scrapbook that I made several years ago and see what other pictures I can come up with. I remember my mom getting after my dad because he would pull silly faces whenever anyone tried to take a picture of him. It's nice to see that there actually are pictures of him being serious.

Thursday, November 02, 2006

Something to think about

I was very touched by something that a friend of mine posted on her blog. Jenny's Thoughts The thing that touched me the most was not even the event that she was writting about. It really caught my attention when she said:

"I hoped I would love God more by the end of the day than I did when I woke up."

Something to think about....


Thanks Jenny. :-)

Monday, October 30, 2006

Updates on Marcus and Jessica

First of all, Marcus is doing well. He is getting tired but handling the treatments quite well. I spoke with him tonight and he is not looking forward to the long drives this coming week (going to Salt Lake for radiation treatments and back - 1 1/2 hours each way - DAILY) but he has a great attitude. It was really cute to listen to Jessica talk to him on the phone. They were talking about their Nintendo DS games, etc and Jessica told him, "you get lots of cool things when you are sick!" I guess she was telling him a grand insider's secret. hehe... he agreed! I told my sister about their conversation and she laughed... and she agreed too. We also agree that if the sick kids don't deserve lots of cool gifts - then nobody does. We are proud of our brave kids.

Jessica is having a lot of tummy pain. I called the GI doctor on Thursday and we were told that he has done everything he can do and the next step is to do the endoscopy. I have not told Jess that yet. I told the GI doctor that we will talk with the Peds Cardiologist before we schedule that procedure. Karl and I were also thinking that if we can keep her pain under control by having her eat every little while and not letting her tummy get empty, then maybe we could put off doing the endoscopy... but that's not going to work. Tonight Jessica was crying in pain and even asking if she should go to the hospital. :*( She tried eating and couldn't eat much. Finally after an extra dose of morphine, some lorazapam and a father's blessing, she was able to eat a banana and relax and go to sleep.

Here is a picture of Jessica and Marcus in 2004. The story behind the picture: In October of 2004 Jessica had a Celebration of Life party at the "Z" mansion. Jessica was in a hospice program and wasn't expected to survive much longer. The Russells and other family members came to spend time with Jessica. She was so happy to see everyone. Good news is that her health improved and she is still here fighting every step of the way! She tells Marcus, regarding medical stuff, "If I can do it - YOU can do it!" She also tells everyone to NEVER GIVE UP.

Pictures of Fiona Elizabeth Anne

Here are the pictures I promised of my neice, her new baby and husband. I'm so happy that everything is going well for them and that my sis-in-law is there to help the new parents. I'm sure she is smooching the little baby and completely enjoying being a grandma.

Congratulations Bekah and Dylan. We love you and know you will be terrific parents... in fact, you already are!