This is a place where I can post family updates and ramble about things as I try to find my way since the recent death of my daughter. Life has completely changed for my sons, my husband and myself. Our faith has been a great source of comfort and we'll continue to rely on it as we press forward.
The Story of Christmas & Silly Socks
Monday, August 18, 2008
Prayer request for Miss Jess
Update on Marcus
Wednesday, August 13, 2008
Quick Prayer Request
I've mentioned my nephew, Marcus, who is battling brain cancer, here before... well, he and his family are on their Make A Wish trip in Hawaii right now... long story short, Marcus got sooo sick that they had to take him to the ER. A CT scan and MRI later they have found ANOTHER BRAIN TUMOR! I called my sis and talked to her about it as soon as I got the email from my mom. Apparently the tumor is in the back of his head but they don't know exactly where nor how large. The doctor who found it (in Hawaii) contacted Marcus's doctor in Salt Lake. After all was said and done, they sent Marcus "home" (back to their hotel) with steroids for the swelling and some pain meds. They are going to finish their trip in Hawaii and then see their doctor next week and make some decisions.
Marcus is supposed to have a tour of Pearl Harbor (his wish!)
I hate, hate, HATE THIS!
Thursday, July 24, 2008
Typo???
Jessica has had multiple holter monitors since August of last year and most of them showed between 8,800 - over 10,000 PVCs. This one said 1,000! WOO-HOO!!!! I'm so happy that this medication is helping her and it doesn't seem to be aggravating her asthma. We are soooooo blessed!
Lately I've had many opportunities to talk to Jessica about having faith. It's nothing less than a miracle that she survived her 2nd heart surgery... a Cardio-thoracic surgeon stood there, looking at me in the eye and said so. It's nothing less than a miracle that she got her eyesight back after the stroke she had during that surgery. Many times she has cheated death including 4 years ago when she was having so many lung bleeds that she would carry a bowl around because she would cough up blood at any time. We prayed for answers and ours came in a little bottle of blue liquid. Morphine. It was a long shot but we tried it and it worked. Hospice was very helpful in the process of finding our miracle and it was very hard when they left us. But Miss Jess is only rarely - I mean, EXTREMELY rarely coughing up blood anymore. Jess said, "But now my heart is having 10,000 PVCs... and I told her to have faith that we would find another miracle to help her with that. I was soooooo excited when I got the paper in the mail and told her about it. I tried to tell her that 1,000 PVCs was 10 times better than 10,000. Blank stare. Being a 7 yr old in a 20 yr old body is a little hard... so trying to grasp the difference between 10,000 and 1,000 was kind of hard for her. So our conversation went something like this:
J: "Is 1,000 better than 10,000?"
Me: "Oh yes! MUCH better!"
J: "Is 1,000 better than 9,000?"
Me: "Yes!"
J: "Is it better than 8,000?"
Me: "Yes! And it is better than 7,000 and better than 6,000, and better than 5,000, and better than 4,000 and better than 3,000 and even better than 2,000!"
J: smiling from ear to ear: "Wow, that is good!"
Jess is scared of dying and also feeling very sorry for herself that she isn't like everyone else. She REALLY wants to have a boyfriend and get married. She wants someone to love her and take care of her. I've tried several different approaches with her since she has set in her mind that since she is 20 then she is old enough to have a boyfriend - so where is he? LOL So the last week or so every time she brings it up I remind her of all the miracles on her life. I ask her if she has faith. Does she really believe that Heavenly Father and Jesus really want her to be happy? She says Yes! Then she needs to have faith that they are watching over her and are going to make sure that she is happy.... but she needs to try to be happy NOW... and not waste her life away wishing for something. She needs to have faith while she waits and God will take care of the rest. (As I've mentioned here before that in our religion we believe that we will all be resurrected - but not reincarnated.) I'm positive that those who don't have a chance to marry and have children in this life will have that opportunity in the next - after being resurrected. Wouldn't that be wonderful for her to have a body that is perfect? One that can walk across the room without getting winded? One that won't need oxygen or a wheelchair? One that will be able to do anything she wants it to? So she needs to learn to have faith and patience. Oh my... that is a hard one! I've been telling God that I've learned patience, it's time to move on! hehe... I'm joking of course but I tell ya, some days I really feel like it. I've been taking care of Miss Jess - who has been very ill her whole life - for 20 years. I'm tired. BUT I wouldn't trade her for anything. I don't want her to leave ... but she does deal with a lot of pain. Every single day. That's hard.
We are so blessed though. We have so many people who love us and support us. I had better get to bed since I'm taking Miss Jess to have lunch at her fav restaurant: IHOP. Our SUV is out of the shop and so I can take her/ the wheelchair/ and oxygen to have a nice lunch with one of our friends from "Tu Nidito". FUN! I hope it's not too hot - nor rainy... the wheelchair lift if on the outside of the SUV and we don't want her motorized wheelchair in the rain!
Anyway, I want to keep up with my blog more often and not leave you all in the dark - so turn on a light already! ;)
Coming up in the next week: Brandon's birthday on Saturday, Sunday is always busy with church stuff (usually Karl and the boys go but I may get a chance to go too - IF I get some sleep before then), Monday is Brandon's actual birthday - 15 yrs old!!! (*yikes!), Tues is a court of honor - both Brandon and Austin have 5 merit badges that they worked on at scout camp and Brandon is advancing in rank!, and Wednesday Brandon has to have ORAL SURGERY! None of us are looking forward to that day. Poor Brandon - please keep him in your prayers.
Thursday, July 17, 2008
My Life.... busy as usual
Let's see.... what has happened:
Jessica: Had a birthday, turned 20 years old!!!!!!!! I can't believe it! The big bad CHD (congenital heart defects) that tried to take Jess multiple times while she was an infant, and again as a child, as a teenager we almost lost her ... but she has made it to "adulthood!" Something Karl and I never dared dream would happen. Of course she is still at the level of a 7 yr old but she has lived for 20 years and that's a huge accomplishment! I'll post pictures soon... I promise! Jessica's wisdom teeth are trying to come in so I'm going to have to get her in to see her dentist. He said that he will take a look but who knows if he can do anything about it.
Justen: Justen and Ravyn have decided to post-pone their wedding until December. After taking a look over living expenses, etc, they realized that Miss Ravyn needs to have a job and help financially before the wedding. It's a huge reality check, isn't it? I think that one of the hardest part of growing up is having to provide for yourself and your family. Karl and I struggled financially for quite a few years and still have to watch what we buy. It's rough going sometimes but I'm sure that Justen and Ravyn will do well once they get everything in order. We are still so happy that Ravyn is going to be a part of our family. At least it won't be so hot in December! The wedding pictures will be less likely to have sweaty, melting wedding party in them. They wedding cake won't have to be served in glasses because it melted either. hehe! I am so glad that we have more time to get everything together, too. Ravyn and I are making her bouquet... I have a picture of her holding her partial bouquet but I think I'll wait until it's completed before I post a picture of it.
Brandon: Poor Brandon has to have oral surgery on July 30th. He has an adult tooth up on the palette of his mouth which has to be surgically uncovered. They will attach a small chain to it and then to his braces and it will slowly pull that tooth down. When it's time, the baby tooth which is in it's place, will be pulled and the adult tooth can come down where it should have gone in the first place. This is the eye tooth and the oral surgeon explained to us how important the eye teeth are. According to the x-ray, his wisdom teeth are ready to be pulled too so we are going to do all that at the same time. It makes sense to sedate him only once and have him recover from surgery only once. I feel bad for him since I know how hard the wisdom teeth extraction is. I had it done one summer while I was in HS and my family went on a trip 2 days afterwards. I had the choice of either going with them or staying for a week with my aunt and uncle. I decided that I might as well go on the trip so I did. It wasn't the most enjoyable trip I've ever been on but I survived! Brandon will survive too. He also has a birthday coming up on July 28th! He will be 15 yrs old. We are having his party on the 25th. He is going to get the Mario Kart for the Wii. Yes, we broke down and let Jessica buy the Wii last month with her government money. Karl and I swore we'd never buy it and at least WE didn't. haha... j/k of course. Since Jess doesn't feel well enough to go out much we figured she should be able to use her money to buy something to help entertain herself. If the kids fight over who gets to play it then nobody does. We've found which games are too strenuous for her to play and which ones are OK for her. She gets so "blue" so easily, we have to watch her or she will be trying to catch her breath and looking like a purple grape. Poor kid.
Austin: Austin is doing well. He is involved in scouts and does his calling really well at church. There's not a whole lot going on with Austin except that he told me that he needs some "Mom and Austin" time. I have been very preoccupied with so many things that I guess I haven't spent enough time with him. He wants me to watch a movie with him so we will definitely have to do it! He and I really need to start a walking program. We are both feeling the effects of not getting enough exercise and being around food all day (all night for me).
Karl: Karl has been working
Karl has also been working on my craft room & laundry room and it is now time to do the texture on the walls and ceilings. One of our friends has a texture machine and is supposed to come on Saturday to
Nancy: is in great need of a gardener... or more likely a crew of people to rip out tons of weeds that have been growing since the monsoon season started. I'm also in need of a maid... or someone with a back-hoe to clean out my mess of a house! The monsoons have brought the much needed storms to our area but of course my fibromyalgia doesn't like storms so I've been dealing with pain. Lots of it. I also have no time to myself except for the times I stay up after Jess goes to bed. Some times it's not until the wee hours of the morning. I'm not kidding. Look at the time stamp on this post. I started this post at around 3:15am and it's now 3:57 am. But I digress.
My sister, Alice, had a baby boy last week! Joseph Hyrum Vivaldo. We got to go and visit them and pass the baby around. He was 3 days old and soooooo cute! Poor Alice looked tired so we didn't stay terribly long. (we also respected her enough to not take pictures of her at this time) Our crew - of
MY BABY!
She's a 2005 Nissan Altima. Karl has been stressing out so much over the price of gas and the fact that our SUV only gets 10 mpg! This car gets 22 - 31 mpg, can fit all 5 of us and the oxygen goes in the trunk. Karl is so smart... he figured out that the oxygen tubing can come through a crack in the seats from the trunk... the seats can fold down and make the already huge trunk bigger so that is an awesome way for Jess to have her O2 and it not be in the way. We still have the SUV for the times that she needs her motorized wheelchair - which would include trips to the doctor, the mall, or any other long-distance walking is required. She doesn't need it to go to some one's home so here we were (in the picture) getting ready to go to grandma & grandpa Jensen's house on the 4th of July. (pictures of that fun event to come later too!) Karl has been so much more relaxed at the price of gas now that we have a much more economical car. We were able to put 1/3 of the price down so our payments are very reasonable. It's a beautiful car - inside and out. Only 30,000 miles on it and still under warranty. Sorry guys... it's ALL MINE! (Well, I let Karl drive it from time to time though... hehe!)
So anyway... these are the major updates that I can think of... and now that it's nearly 5:00am and it's starting to get light outside, it's time for me to go to bed. No, I'm not a slow typist... I just got to playing with the SD card that can fit nicely into my laptop (which I am using right now) and I downloaded 3 month's worth of photos. Now I need to transport them to my portable (pretty) hard drive. :) *I'm soooo spoiled!!!!*
Friday, May 30, 2008
Life is Busy, as usual... update on our family
So here we are... thumbing our noses at the CHD defects that Jess was born with. It tried to take her many times during her infancy, her childhood and teenage years. Well too bad Mr. CHD, Miss Jess is making it into adulthood! (and yet she is still my little girl who still loves Barbies, coloring books and tracing) I love it!
Wednesday, May 28, 2008
By the way, we are home
I was soooooo glad to come home. I swear, those chair things that pull out into beds are HORRIBLE! I've tried using a cot that Karl uses when camping, but it didn't seem to be any better than the chair. I'm just getting too old for this. I keep saying that I've been doing this for almost 20 years but the truth is, it's almost 21 years. You know, Jessica is turning 20 next week but I took care of her and practically lived at the hospital with her the whole first year of her life - you know, before she turned one year old! So it's really 21 years that I've been taking care of her 24/7, watching her breathe, taking her to doctors, sleeping in the hospital with her, walking the hospital halls with her, etc. I'm too tired to type everything I do for this child. LOL My point is that I've been doing it for a long time.
I had a little chat with Dr. Samson, one of the Pediatric Cardiologists who specialize in electrophysiology. He was actually the one who admitted Jess to the hospital and Dr. Valdez checked in on her too. They work together with the other team of PCs. I asked Dr. Samson who was going to get the "short straw" and take over Jessica's case once Dr. D retires next month? He laughed and said, "Probably me... you know, we go way back! I remember holding her on my lap as I did my reports when I was a resident." We had been talking about how he was a resident here way back when Jess was a baby and we were "frequent flyer's". He said that there was a catch to that though... he is going to New Zealand in July and won't return until December! He will be working in the cath lab and learning new techniques and bringing them back to Tucson. I told him that I am a member of the PdHeart support group and that I know there's families on there from New Zealand. I should warn anyone on that list to watch out for him! He laughed and told me to say, "Whatever you do, don't go into the cath lab with Dr. Samson!" LOL So if any of you are in New Zealand, I'd love to warn you about Dr. Samson... except that I only have good things to say about him. He is a very gentle and kind doctor and he's pretty smart, too. :)
Dr. Samson said that he and Dr. Valdez will work together with Jessica since two heads are better than one. I mentioned that Dr. Klewer did Jessica's cath a few years ago and we really like him too. Hey, the more the merrier then! I think it's great that so many pediatric cardiologists are willing to work together to help Miss Jess. Dr. Donnerstein is retiring next month and we are really going to miss him. He said that as far as he is concerned, he is not retired when it comes to Jessica.... well, I guess he had better give me his home email address then. I'll let her send him emails everyday. LOL Jessica's new thing to do is send emails to me... they are really cute. She says things like, "I love you mom signed aka mary potter malfoy and princess jessie married to legolas" Of course there's no punctuation or anything and if you don't know who her "aka"s are, she will be happy to tell you the whole story - actually two stories that she has come up with. They could be considered fan fictions. Two nights ago I caught her sending an email to my sister, her aunt Karen. It was really cute and in it she told Marcus to be sure and take his medicine so it can help him feel better. Marcus is my nephew who is battling brain cancer ... he is having some emotional effects from the damage to his brain from the tumor and he won't take his meds... which is not helping. Anyway, if any of you would like some cute emails from Jess, let me know and I'll have her email you! She loves people and loves talking to them. I wonder where she gets that from... not that I've gotten off track of what this post is to be about or anything....
I wish to ask if any of you have dealt with anorexia? There's a young lady who was Jessica's roommate who is in bad shape. When I first saw her I wondered if she was an AIDS patient since she was so frail but after a couple of hours in the same room I knew what was wrong. I felt so bad for her. I have to admit that I got tired of listening to the 10-minute long discussions on whether she could eat two of the broccoli florets instead of all 3 since it looked like more than 1/4 cup, discussions on how many times she could walk to the playroom (she used to compulsively exercise so she is limited on that) and listening to her trying to play the games of changing her mind as to what flavor of pediasure she would drink in attempts to postpone drinking it. Sometimes she would get very emotional at mealtime and it would upset Jessica. I'm so glad that we were only there two days (one night) so that we could come home and not have Jess worry about her roommate. Jessica loves everyone and worries when she sees someone else having a hard time or being sad. While we were there I overheard this girl talking on the phone to her mom and wondered why the mom wasn't there. When we were packing, getting ready to leave, I saw the mom come in. I was really weird because just catching glimpses of her, I felt like giving her a hug. I felt a connection to her and she looked a little familiar but since the roommate insisted on keeping the fabric partition closed, I couldn't see her very well. As we were leaving, the mother said to me, "you don't remember me, do you?" I said that she looked very familiar but didn't know where I knew her from. Come to find out, she was the mother of the girl who planned and executed a special prom that Jessica went to a few years ago! This lady, we'll call her Ms. M, has a daughter who, if I remember correctly, had cancer and then decided to have a prom for teenagers who are battling serious illnesses. That was Jessica's one and only date she has ever been on! I have several pictures of the prom and will have to find them, scan them and then upload them here. Ms. M was there, helping her daughter with the prom and she was very taken with Jessica. She helped Jess pick out an outfit and some jewelry and she even painted Jessica's fingernails. Ms. M and I talked and we hit it off. Anyway, the one who organized the prom was Ms. M's older daughter, who is now in college. This young lady who was Jessica's roommate is her younger daughter. If I remember correctly, Ms. M's husband died of cancer, she had a bout with cancer and I believe her older daughter had cancer. Now her younger daughter has anorexia and will most likely have to be admitted to a facility... she is almost 16 and only weighs 79 lbs. I hope I'm not violating any HIPPA laws or any confidences but it is shocking to me that this disease could get so bad? I can see how this young lady would have a lot of stress with all that her family has gone through. Ms. M told me that her daughter came in with multi-organ failure from the disease. Apparently this isn't the girl's first hospitalization. Anyway, I'm just trying to wrap my head around this disease. There has got to be more to this girl's life than trying NOT to eat and trying to exercise to lose weight. Jessica tried talking to her several times about different things (she had to go through our side of the room to use the restroom and that's when Jess would
You know, sometimes you do go home thankful for your own problems.
Friday, May 23, 2008
Blogging from the hospital
Jess has been started on the Metaprolol today at about 2:00pm. The peds cardiologist said that if she gets two doses and does well then we could be on our way home
Well, Jess normally has a breathing treatment at 9:30pm and the respiratory therapist said that she sounded fine when she came in to give it to her. At about 10:45pm Jess coughed kinda hard and said she needed another breathing treatment. I wondered if it were a ploy to stay up later since she asked for her gameboy right after asking for a breathing treatment. So while they called for the nurse to come listen to Jessica's lungs, I told Jess that she was NOT turning her gameboy back on since she doesn't want to turn it off once it's on at night. The nurse said she seemed to be ok but called the RT (respiratory therapist) to come and give a breathing treatment. Oh yeah, the doctor had to write for one more treatment since it wasn't written as PRN in the orders. So after the 2nd breathing treatment which took place around 11:45, the RT listened to her and said that she could hear a slight wheeze. I hope that was just a fluke or the RT didn't know what she was talking about.... except that Jess seemed to acknowledge her and not only know what she was talking about but said she could feel it a little. *sigh*
So just keep us in your thoughts and prayers. Pray for GOOD breathing and NO wheezing!
Sunday, May 11, 2008
Jessica Graduates from High School!
Jessica graduated from High School! This was quite an emotional event for us. Our "Little Girl" graduated from High School! Jessica has been going to school in TUSD since she was 3 yrs old... almost 17 years! She has had her ups and downs medically over the years and has been in Special Ed this whole time. I thank the Special Ed teachers and aids SO MUCH! They have really contributed to how well Jessica has done academically and socially. She loves school, she loves to learn and she especially loves to socialize. Unfortunately the time has come where she is just not able to make it to school due to her medical problems. Her wonderful teachers offered to have a special graduation just for her so she could have that experience. (She is still welcome to come back to the class and visit any time she likes so it's not as if she won't be able to have that contact anymore.)
Jessica was so excited to be able to wear the cap and gown (she borrowed Justen's)! One of the teachers ordered a cake especially for her. The principle presented her with her diploma but he had to leave and it all happened while Karl went out to his vehicle to get his camera! So when Karl got back to the classroom, the teachers helped us do a much better presentation of her diploma and we got an excellent photo of her receiving it. She was also able to walk a few steps to receive it in front of the classroom whereas when the principle did it she was sitting in her wheelchair at the side of the room. The 2nd time was much better!
If you think about it, not many people would have believed that Jess would make it this far. She is amazing. God is amazing. We are truly thankful to have her in our lives still. And we are thankful to have friends and family like you in our lives as well.
Jessica receiving her diploma

Jessica said a few words... she said "I love you all".




Justen and Ravyn came to the graduation

Jess and all her siblings... even her future sis-in-law!

Linda and Donna came to see Jess graduate. They were Jessica's hospice team when Jess was having lung bleeds and needed them. Now they come for social visits. They are great friends!



Saturday, May 03, 2008
Digitek Recall

I got an email on Monday, April 28th, about the recall from a member of an online support group for families and patients with CHD (congenital heart defects). This email group is called PDHeart and is a member of TCHIN (Congenital Heart Information Network). I checked and sure enough, the medication that was recalled was Jessica's medication. I called the pharmacy and they knew about the recall (apparently they had just heard about it). They said they would replace the Digitek with the brand name Digoxin. I called the PC (pediatric cardiologist) and told him that Jess had been feeling nauseated over the weekend. The PC had not heard of the recall but wanted Jess to have lab work done to see if her levels were high. He wanted me to hold her dig for the day just to make sure.
So I took Jess out Monday afternoon. She didn't want to go since she was feeling so tired but I dragged her out anyway. Don't forget that I have to load the wheelchair on the lift, take the oxygen tanks out, et. It's always a lot of work to take her out and I was tired from caring for her. So... there is a long wait, there are quite a few people there and Jess is miserable and wants to go home. Then Jess tells me that she needs to use the bathroom. Ok, where's the bathroom? The lab had just moved into a new location and I start looking around. I could see through the window that goes into the reception office and behind there was a wheelchair bathroom. Nobody was in the reception area so I figured I would just open the door that leads back there and take Jess to the bathroom. Well... the door is locked! I could hear a baby crying and knew that the
On an interesting note, I got a message on my answering machine the next morning saying that they lost Jessica's blood and we needed to go back for another stick. They sounded really apologetic. I started to get ticked off and then the very next message was that they found it - it has already been sent out to the lab it needed to go to and that her blood was safe and labeled properly.
I didn't get a call from the PC that day so I held her dig again. Jess was feeling better and I was glad. The next day which was Tuesday, I called the PC and he didn't have the results yet so I had to give the information as to where and when we did the blood work so the secretary could find it. I eventually got a call telling me that Jessica's dig level is normal. Jessica had her usual dose on Sunday around noon, missed Monday's dose and got the blood draw Monday evening (almost 6:00pm). It is possible that her levels were a little high over the weekend and caused her to feel sickly or maybe she just was fighting a bug. The PC told me that she is on kind of a low dose so it could have worked up to a high blood level over time. She had been taking the recalled drug for more than a week. The main thing is that she is OK, I got the new digoxin and she is back on her regular level.
Here is what really caught my eye in the recall:
"The voluntary all lot recall is due to the possibility that tablets with double the appropriate thickness may have been commercially released. These tablets may contain twice the approved level of active ingredient than it appropriate.
Digitek® is used to treat heart failure and abnormal heart rhythms. The existence of double strength tablets poses a risk of digitalis toxicity in patients with renal failure. Digitalis toxicity can cause nausea, vomiting, dizziness, low blood pressure, cardiac instability and bradycardia. Death can also result from excessive Digitalis intake. Several reports of illnesses and injuries have been received."
Here is a picture of the Digitek (which was recalled) and Digoxin. It's not the best picture but you can see that one is thicker and a little wider than the other. Can you pick which one was recalled?
What is amazing to me is that it hasn't been on the news, in the newspaper or had any publicity at all! I've heard of several members of the online support group who's pharmacies are giving them a hard time about the recall and won't replace the medication!! This is a very commonly used drug. Jessica has been on it her whole life! The recall admits that they have had injuries occur with the drug mistake and yet some pharmacies are not going to replace the medications? CHILDREN take this medication and are affected by this recall if they are old enough to swallow pills.
My next-door neighbor is encouraging me to call the local news about it. I'm not sure if I will but we'll see. I've been extremely busy with trying to get this medication/recall straightened out, blood work done and getting Jessica's graduation organized. Then we had the graduation Thursday and a party here at our house on Friday. I slept part of today ... until Karl woke me up telling me that Justen was in a car accident! Yeah, he's OK. The other people are OK too (except the mother in the car is a B - och) Our pick-up has seen better days but at least it is drivable. That's a whole other story but it's been quite a busy/emotional week. I'll be posting pictures of Jessica's graduation in my next post.
If you know anyone who has a heart condition and may be using Digitek, please let them know about the recall. You could save their life!
*
Tuesday, April 08, 2008
More Tears
Needless to say, it breaks my heart that she feels so left out. I know that her quality of life isn't what it used to be. She doesn't have the strength or stamina that she used to. And to think I used to feel bad of all the things she was missing out on back then.... and now she can't do most of the things she used to. She said that the young women don't understand what it feels like but then hugged me and said, "But you do!" I reminded her that she always has me to be by her side. We hugged, cried a little and then I said or did something silly and we changed the subject. I finally got her settled into bed, with 4 barbies. LOL Of course she played with them for a little while and then got up to go to the bathroom. What can I say? It was one of those nights where I knew she needed the Barbies to comfort her. She keeps telling me that she likes to play with her Barbies because it's like she gets to pretend to be married and have children - just in case she doesn't get to in this life. *sigh* I wish it didn't have to be so hard for her.
[For those of you who don't understand what I meant about the next life, we believe in the literal resurrection of all living beings but no, we don't believe in reincarnation. For more details please visit: LDS.org or click here for the topic of "resurrection of all living beings".]
Saturday, April 05, 2008
Cancer Strikes Again
The most recent family member to be diagnosed with cancer is my niece, Ruth Ann. She is my older brother's daughter and is almost 21 yrs old. She was diagnosed with cervical cancer. She got married about 1 1/2 years ago. Her and her husband live with her family and I'm so glad that she has such great support. She is going to go to the Huntsman cancer center. At first everyone was really freaking out because the lab called and told them that she had cervical cancer stage 3!!! That would mean that the cancer has progressed quite far. We just couldn't believe it but apparently someone mis-spoke and she has cervical cancer TYPE 3, Stage 0!! Wow, what good news! It looks like they caught it early. What a blessing in disguise, huh? After that horrible scare, we are all relieved that it is in the early stages. Hopefully she will get the best care and beat this thing.
I wish she could come and visit before she has to start treatments. We couldn't attend her wedding because Miss Jess can't travel and is not doing very well. I don't dare leave her, in fact, I feel so crummy most of the time that I couldn't even imagine traveling. My brother Brian (Ruth's dad) is coming to visit next week. He is bringing two of his daughters, his youngest son and a granddaughter who we have never met. He had planned this trip awhile back and put it on hold as soon as Ruth was diagnosed with cancer. Now that everything is set up for her to get her treatment, he is going to come after all! We are planning on having everyone come her next Friday for dinner. Like I said, I wish that Ruth and Garrett (her husband) could come too.
If you wouldn't mind keeping Ruth Ann in your prayers along with Jessica and Marcus, (and my sister's MIL, Rebekah) I would really appreciate it.
Friday, April 04, 2008
What a PAIN!
Here's a few things that we know about Miss Jessica's tummy problems (which have been going on for YEARS):
1) She has gastritis and "ulcerations everywhere"... we discovered this during an endoscopy just over a year ago (Dec of 06).
2) The causes of her gastritis is a combination of taking
3) There is no cure for her lack of oxygen (which will continue to get worse as her health deteriorates) and she needs every single medication she is on.
4) Jess takes twice the Prevacid as the usual prescribed dosage for adults. Prevacid helps keep the acid levels down in the stomach.
5) She takes Carafate 3 times a day. Carafate must be taken on an empty stomach. It rules our lives. Seriously. Jess takes one tablet (which must be swallowed quickly or it would "explode" in the mouth and make one gag and throw it up. It tastes very chalky. Trust me. We know this from experience. Too many times. Then Jess has to wait one hour before eating anything. Finally after eating a meal (or snack as her tummy hasn't ever liked to eat very much all at once) then we have to remember what time she has stopped eating and then take another Carafate 2 hours later. So two hours after stopping eating a Carafate is taken then she has to wait one more hour before she can eat again. Then stop eating. Then two hours later take a Carafate. Then wait one more hour before eating. We have to do this all day long, every single day. It's hard to make Jess eat enough when it's time to eat so that she doesn't get too hungry before being able to eat again yet her tummy can't take too much at once or she throws up. Carafate coats the stomach and helps heal the ulcers and calm the gastritis.
6) Jess has very sluggish bowels. This is also due to lack of oxygen. For many years now she has struggled with constipation and several years ago she was started on Miralax. "Miralax is a polyethylene glycol powder which dissolves in water. This material is not absorbed from the intestinal tract. It stays within the gut and acts to pull water into the intestine thereby increasing the volume and frequency of bowel movements." The site recommends to not be taken for over 2 weeks (of course unless directed so by a physician) . Due to Jessica's chronic lack of oxygen, she needs Miralax long term. In fact, she now takes up to twice the amount that is usually prescribed to most adults. I usually help Jess in the bathroom so I know whether she needs more Miralax or less on a daily basis and the GI doctor has told me that I am doing a really good job! Not the funnest job in the world but I love my daughter so I do what I need to.
7) Jessica's GI doctor decided to put her on Xifaxan within the last 6 months. Xifaxan is an antibiotic that fights bacterial infection only in the intestines. In many cases bacteria can over-grow and cause painful gas. Jessica's tummy has been somewhat distended and a sonogram was done to see if there was fluid build-up. There was no fluid so we were told that it is gas. Yes, Jess has a lot of gas so she was put on Xifaxan. It is given for a two week period and then sometimes has to be repeated in 2 or 3 months. Well, Miss Jess has to do things her own way.... and she seems to need it constantly. She has more pain within 2 or 3 days after a 2-week treatment so I usually have to refill the prescription right away. Since the medication is not absorbed into the bloodstream the GI doctor has told me that it's ok for her to take it all the time if needed.
Jessica has still been having some stomach pain but not extreme. We saw the GI doctor on March 20th. He examined her and said that her stomach was still somewhat distended and Jess told him that she still has some tummy pains. He wanted to start her on a tiny dosage of Erythromycin to help empty her bowels. I knew that Erythromycin could cause stomach pains and diarrhea so I was concerned about her taking it. I was reassured that since Jess would be taking it in such a minimal dosage - 100mg once/day vs the usual 500mg twice/day, then that should not be a problem - and if it was then I could stop the medication. The main thing the GI doctor was worried about was if it would interfere with any of the heart medications. So I was given a prescription and told to hold on to it until the GI doctor could get in contact with the Peds Cardiologist.
I took Jessica to see the pediatric cardiologist (PC) the very next week, March 27. We just happened to have an appointment for that day. Apparently Erythromycin can cause arrythmias! I had no idea that could be a side effect! Since Jess is still having around 10,000 PVCs daily we sure didn't want to increase that! The PC wanted us to do an EKG that very day before starting the Erythromycin to get a baseline of what hers looks like and then we were to go back the following Tuesday for another EKG to see if it had changed. The PC didn't think that anything would change considering the tiny amount that she would be taking.
I was still very skeptical about starting the medication but figured that Jess deals with so much pain every day she deserves to try this in hopes of diminishing her tummy pain. Jess took one dose of Erythromycin Thurday night and another one Friday night. By Saturday morning she was complaining of more tummy pains and by that evening she was practically doubled over in pain. I told her that there was no way she would take that medicine again. Of course part of me wanted to think that maybe she had caught a stomach bug but that isn't the case. As I mentioned at the beginning of the post, she was in so much pain that she hardly slept Saturday night. It's now a week later and she is still having a lot of tummy pain. I am so upset that I agreed to let her take the Erythromycin. She hasn't been in this much pain in several months. I know that there was no way to be certain whether that small dose would help or hinder but I truly had no idea it would last this long.
Today (it's still Thursday in my head since I haven't gone to bed yet)... anyway, today we were invited to go to lunch with our friend Susan from our support group, Tu Nidito. Jessica hasn't gone anywhere fun since.... well, hardly ever all winter! So we planned our little outing. Jess was so excited that she woke up at 8am. We were supposed to go to her favorite restaurant, IHOP, at noon. I told her to go back to bed and get some sleep since she didn't get to bed until after 1am. Well, she went back to bed but kept getting up.... so when I finally got up to have my shower I told her that I would be in to help her get ready to go as soon as I was done. Justen was home so I asked him if he would be willing to load the wheelchair onto the lift for me and he said yes. The silly girl was SOUND ASLEEP when I got out of my shower. I tried several times to wake her up and she was too tired! What a goof! I called Susan and she recommended that we reschedule for another day but I knew that Jess would be upset if we didn't go today so I asked Susan for a little more time to get her up and take her to lunch. I finally did get her awake and she was so glad to be able to leave the house and go somewhere fun. She wasn't able to eat much at all because of her tummy ache so we brought her food home. Later this evening she was able to eat 2 pieces of her chicken strips and a little bit of fruit. She kept saying that she was so happy that she got to go have lunch with me and Susan and she didn't even let her tummy aches get her down.
It breaks my heart to see her in so much pain. I've been doing a lot of wondering WHY. She has already been through so much, WHY does she have to go through more pain? Over the years I've had so many people (some family members included) tell me "It's in the Lord's hands so don't worry", "You know she will go to a better place", "You need to accept it and move on"... etc. I KNOW it's in God's hands but sometimes I wonder why His Hands don't comfort her and take the pain away. I KNOW that heaven is a better place but the selfish part of me wants her to experience comfort and peace HERE. I KNOW that I have accepted being a mom to a (pick your term) chronically ill, disabled, developmentally delayed, medically fragile, terminally ill child but how do I move on when her health is slipping backwards? She knows that girls her age are graduating from high school, going away to college, getting jobs, getting married.... but at the mental age of about 7 she doesn't understand that she can't just choose some guy to marry and get married. She doesn't understand the responsibilities of being an adult, living out on your own, being married and how to maintain such a relationship. Heck... my oldest son is barely learning about all that and how hard it is to be a responsible adult. (this could be a whole new post!)
I've been having a difficult time lately. Many emotions going on inside of me. Too much stress. So much worry. BUT I have made sure that I enjoy the little things. I laughed out loud at the fact that my "little girl" was so excited to go out to lunch that she couldn't sleep in but then fell asleep at the last minute and almost missed going out. I love her stories she makes up and writes down in her books. It's very interesting to try to make sense of those words and the lack of sentence structures and very little punctuation. I probably use way too many run-on sentences but this girl can go two.... maybe even three pages before inserting a period or exclamation point. LOL! I've been enjoying Brandon being the comedian that he is and Austin growing up and trying new things. Justen has been opening up to me more as he tires to prepare for his future and his wedding. Karl and I have tried to go out a few times and we are soooooo grateful for our relationship. So don't think that all is doom and gloom here... but it is so hard to watch my only daughter slowly deteriorate and know that she is dying. I look at her laying on her hospital bed sometimes and imagine what it will be like when that bed is gone. Today as I stood in her doorway and she was talking to me I looked up at her shelf which holds a ton of stuffed animals and wondered to myself if the people who gave those to her will want them back as a momento of their love for her? My nephew is battling a brain tumor and one of my nieces just found out that she has cervical cancer. Is it right for me to hope that IF either of them dies from their cancers that it happens after my daughter is gone so that I can travel to go comfort my siblings? How many people think about these things? How many people have reason to? Probably more than I know. Probably way too many people... who all feel alone in their feelings too.
Now you know why I haven't updated in awhile. There is so much going on that it takes me 1/2 the night to write it. If I try to write during the day then Miss Jess interrupts me 20495838472 times and it doesn't come together. LOL
I have some fun Easter pictures that I will try to upload soon. We went to the Jensen Grandparent's house and enjoyed our visit with them. If I don't then upload the photos and post about Easter then please remind me to! Like I said, it's not ALL sad/hard/difficult/painful. I want to post about the fun stuff too.
Thanks for reading and thanks for caring.
Tuesday, March 18, 2008
It’s The Ultimate Blog Party 2008!

As usual I'm a day late and a dollar short. There was a blog party going on last week which was hosted by 5 minutes for mom. Apparently some of the coolest bloggers are still partying and visiting other blogs. So head on over and par-tay! (click on the banner above)
They gave away quite a few prizes and since I missed out, I'll have to try to remember to party with 5 minutes for mom again next year.... but next time I will try not to be so late! At any rate, they always have some type of prize or cool thing happening over there so go visit them anyway. That site is run by identical twin sisters who are raising families and work from their homes. Their site says: Bringing Moms the best in Blogging, Shopping, Parenting, and Entertainment.
Thanks for stopping by! And to any of you who came by from the blog party before I got my banner posted, I totally forgot to do it! Gah! So sorry! But it's up now!
Feel free to leave a comment. Everybody loves comments! ;)
Monday, March 03, 2008
Awards
I can't believe that it's award-winning time again already. I don't usually watch the award shows. Don't hate me, but I really don't care who wins the Oscar, Tony, or Golden Globe.
So why am I blogging about the awards?
Hang on, I'll tell you....
It's coming....
You don't have to wait much longer... I know that the suspense is killing you..... but that's what they do on those shows, isn't it? They make you wait until the very last moment to build the suspense... until you are sitting on the edge of your seat, just waiting for the news....
And the winner is:
ME!!!! I won an award! I know, you can't believe it. I can't believe it! But here I am. Just a regular mom blogging about normal life things. That is, the "normal" life of a family. A family with 4 kids, all of which have their own special needs which include: Aspergers (a form of austism), ADD, ADHD, asthma, depression & anxiety... and that's just my 3 boys. That doesn't include my daughter who has congenital heart defects, asthma, lung bleeds, strokes, 5 heart surgeries, extremely low oxygen saturations, is on oxygen and terminally ill. Yup, I blog about my normal (boring) life. But I still won an award. Amazing, isn't it?
So what's the award I won? It's the xxtraordinary blogger award! See?

Dan from Chez Oddness honored me by giving me this award. Thanx Dan!
So what do I blog about that is so xxtraordinary? I'm not sure. I'm just ordinary and normal... whatever NORMAL is. LOL
Yeah, I blog about MY normal. MY normal may not be the most thrilling blog to read. It may not take you on trips around the world and show you amazing sceneries. It may not be the most entertaining blog around and leave you chuckling as you read the lines I type. But it is MY life. And do you know what? I wouldn't have it any other way. I wouldn't trade any of my children or my husband for anything.
This afternoon as I was napping, I dreamed that we were trying to buy a bigger house and that we were so strapped for cash that I woke up in a panic. As I opened my eyes and saw that I was home, I was so relieved. I love my home which of course includes my kids and hubby. I've been sick for two months now and was finally feeling a little better but then it came back with a vengeance today. I slept most of the day while Karl took care of the kids. It's been stressful being sick and trying to take care of my home and family. I also know that I'm having some stress about my oldest son getting married and leaving home, but who doesn't at this stage in life? Am I right? I know I am. My mom gets great pleasure in telling me how hard it was on her each time one of her children (including me) got married. She did it 6 times! I think I will get through this.
So you see? My life is kind of normal. But not TOO normal. Not so normal that it's boring. After all, I've passed 20,000 hits to my blog in less than a year. I intended to have some sort of prize for the 20,000th visitor but alas, it came and went without me even noticing what day it happened. Maybe I'll do it for the 30,000th visitor? We'll see... hopefully my family and I will be feeling better by then.
Thanks to all who enter this blog! I see that I've had several new visitors and I hope you will not be bored out of your wits, but that you will come back again. And to all of you who come here and read, I thank you too! I blog for my own benefit... it helps to get things "out", but it's nice to know that others care. You care about me and my family. I know many of you come here to check on my precious daughter, Jessica. She is amazing and blesses me every day. I am so glad that so many of you love and care about her too. She is sick with the cough/congestion right now but is not only taking her many asthma meds, but she is on prednisone too. She is NOT in dire straights, she is actually handling this illness quite well. She's my little energizer bunny... she keeps going, and going, and going...! and it wasn't her that the ambulance came for a few nights ago. It was my husband, Karl. He had been sick, severe coughing and congestion, and had returned to work (against my better judgment). After working all day, he was spent. He tried resting in the bedroom but was coughing practically constantly. He tried to come out to the family room but went into the kid's bathroom to lean on the sink as he collapsed to his knees. I came looking for him and he could hardly breathe. I called 911 and he laid on the floor with his head on a big package of toilet paper rolls. (LOL). The paramedics came and helped him into the living room where they took his vitals. He seemed to be doing a little better but he was still coughing up phlegm, had a fever and his heart rate was up. Jessica was crying, the younger boys were coming out of their room to see what the commotion was and Justen was not home. I called Karl's parents who live across town. They agreed that I should stay at home with the children and they would meet up with Karl at the hospital. The ambulance took Karl at around 11:00pm and he didn't get home until after 4:00am. He was diagnosed with acute bronchitis and given prescriptions for several meds. My in-laws stayed with Karl all that time and brought him home. They aren't spring chickens anymore and I'm sure it was hard on them to be up all night. I am so grateful to them that they were able to help out in that way. I know, Karl is their son and I know I would do the same for any of my sons. Heaven knows I've done it a billion times already for my daughter! But thanks again, Mom and Dad.
Poor Justen got home and saw the fire truck in front of our house. He saw the paramedics going into our house and just then the ambulance pulled up. He thought the worst - that Jessica had died or was dying. He came inside and saw Jessica standing there, crying. He was relieved that she was ok and since I was standing by her, letting her lean on me, he knew that I was ok. He still couldn't see who was on the couch because so many paramedics were in the way. He remembered that Austin has been sick for 3 weeks and has asthma, he then wondered if Austin was ok. Just then he was able to see that it was his dad sitting on the couch, talking to the paramedics. He told me later that he was relieved because he thinks of his dad as being a big, strong man and that he would be ok. I'm just glad that Karl wasn't having a heart-attack... that is something that he is at risk for because his cholesterol is high - but that's another story for another blog post. haha.
Jessica thanked the paramedics for coming and helping her dad because he is her hero. She also told them that they came to help her when she was coughing up blood a few years ago.
So maybe my life isn't quite as boring as I thought. I guess "normal" doesn't have to be boring. In fact, sometimes I wish my life were a little more boring and less medically interesting? LOL
So now it's time to pass the award on to 5 xxtraordinay bloggers.
First, I give the award to my sister, Karen, at i made it through another day. Her oldest son is battling brain cancer. Her blog is about Marcus, cancer and how cancer effects the rest of the family. They are an amazing family and my nephew, Marcus, is an amazing young man. I hope you pop on over there and at least see the picture of her 4 boys at the top of her blog. That picture makes me smile. They are such great kids!
I give the award to Julia from My Adventures and Antics. Julia has a son with CHD (congenital heart defects) and just recently had her 5th baby! Yes, she has 5 children and still blogs, takes the most amazing photos of the kids, and offers her prayers and support to me and my family. I think she is secretly SuperMom!
Awesome Mom from Adventures of an Awesome (Sometimes) Mom deserves this award! She has two adorable little boys who keep her on her toes. One of the two boys has CHD but I sometimes forget which one since he is so active! She is into knitting and made the cutest dinosaur for her son's birthday!
June at The Burnett Clan in Co has two awesome teenagers, one of which has CF (cystic fibrosis). June's blog is about her family, losing weight, her views on political issues and some fun things mixed in. June is very supportive of me and my family. She's a sweetheart. I hope she accepts the award. ;)
Last, but not least, I give the award to Jennifer at Jennyhaha's Flaw and Disorder. She has a way with words that makes you giggle as you read about her adventures of having 3 "toddlers" and another baby on the way! Yes, I think she's insane - but a sweetie too. One of the twin girls had heart surgery a few months ago. She did very well and is back to her normal, little girl self. Jenny offers humor and support.
And so I come to a close on my award receiving & giving post. I'm on my way to bed and not a moment too soon. I'm tired and sooooooo sleepy.






