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".

Jess with Dad and Mom. Dad had to come while on duty, that's why he is in his uniform.

Barb, one of the teachers, got this cake made for Jess.

Jessica and Barb - we've known Barb since Jess was in kindergarten. Barb was a Teacher's Aid in Special Ed while Jess was in Elementary school for a few years. Later, when Jess started High School, we found that Barb had transfered to that Special Ed program and she has been with Jess for the last 5 years too! We just LOVE Barb!

Jessica received flowers from her former teachers Mrs. Bentley and Mrs. Palmer. (we didn't get a chance to get a picture of Mrs. Bentley with Jess but she was at the graduation)

Jessica with Mrs. Palmer - who was Jessica's teacher in kindergarten too. She transfered along with Barb to High School and was Jessica's teacher again for 4 years until she took a different job. She is also a very wonderful teacher and friend!

Justen and Ravyn came to the graduation


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

Austin drew Jess a great dragon picture while at the party.

Jess with some of her classmates and Elaine, the health clerk.

Elaine, Grandma Jensen and Brandon hanging out at the graduation party.

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!

Jess and Amanda - our social worker and friend from " Tu Nidito".

Jess and Mrs Pankratz - Jessica's teacher from middle school. We still keep in touch with her. She was such a great help to Jess through the middle school years.

Scott, one of the Teacher's Aids, with Jess.

Jessica's whole class! Aren't they great?!


Thank you for stopping by. Leave your congrats messages please! It will really make Miss Jessica's day!

Digitek Recall

Digitek, a generic form of Digoxin (a very common heart medication) was recalled on April 25th, 2008. Here is the link to the 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 bloodsucker phlebotomist probably needed help from the other person who was working there. I was having flashbacks of all the blood draws Jess had as an infant through childhood and having to hold her down while she screamed and kicked, scratched and bit squirmed. Sometimes we needed multiple people to hold her down. Sometimes the veins wouldn't cooperate so it took multiple sticks and fishing around. :( I'm soooooooo glad we are past that - past having to hold her down and her screaming anyway! We waited and waited. I stayed right there at the window trying to catch a glimpse of anyone to let us in so Jess could use the bathroom. She was really uncomfortable sitting in her wheelchair and worrying that she might have an accident. ggggrrrr!!! Finally one lady came into the room and I immediately told her that Jess had been waiting to use the bathroom and couldn't wait any longer! So she rushed to let us in. Apparently someone had called in sick and she had to help with the child getting his blood drawn. Yup... I knew it. At least once Jess was done in the bathroom they took her right back to get her blood and we were outta there!

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!

*

More Tears

Miss Jess had a very hard night last night. She got very discouraged and started crying. She feels left out. She knows that most girls her age have boyfriends or at least date. She is jealous that Justen is getting married and wishes that she could have that kind of relationship. She is at the level of a 7 yr old in so many ways but has the hormones of a teenager. She also has some very righteous desires such as being married and having a family. Last night she let a lot of her anguish out. She said things like, "What if I never get married? Doesn't Heavenly Father know that I want someone to love me?" {insert me fighting back my own tears and a huge lump in my throat} I told her that of course Heavenly Father knows the desires of her heart. I told her that she will have a chance to get married whether it's in this life or the next. She said, "I want it to be in THIS life!" More tears. I'm thinking that it may be time for her to get a Patriarchal Blessing so she can hear of the many blessings that the Lord has in store for her.

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".]

Cancer Strikes Again

I'm sure that most of you know that my sister's son, Marcus, is battling brain cancer. He is hanging in there and is such a fighter. He is having some side effects from where the brain tumor was. He is having a lot of emotional problems. He is now seeing a therapist and hopefully his outbursts will subside. My sister, Karen, has a blog called "I Made It Through Another Day". Feel free to stop on by her blog and say "HI!" Karen's MIL (husband's mother) was just recently diagnosed with cancer. I don't know exactly what type of cancer but John (my sister's husband) must be having a hard time. Both his son and his mother are battling cancer.

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.

What a PAIN!

Miss Jess is having a lot of tummy pain. She was doubled over in pain last Saturday night and only slept off and on most of the night so I stayed up with her. Morphine seemed to help some but not much. She got two extra doses of morphine that night so that says a lot as to how bad her pain was. Sunday wasn't much better but she was able to eat a couple of popcicles. Monday and Tuesday were slightly better with just a bite of food here and there. By Tuesday night she ate 1/2 bagel with cream cheese so that was an improvement. She is slowly starting to eat a little more so I am hopeful that the worst is behind us. That is for now.

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 a boat-load of multiple medications and lack of oxygen.

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.

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! ;)

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.

The Start of Something New

Ahhhhhhh, to be young and in love.... remember how it felt to first fall in love and everything is new? I remember being young and falling in love with a special young man. This young man didn't have a job, he had come home from his mission early because he was very sick and he wasn't sure what he wanted to be when he grew up. But I saw beyond that. Waaaaay beyond that. ;) We prayed about getting married and our answer came back a resounding YES! So we did.




We did what we needed to do to secure jobs for both of us and we started our lives out together. We lived on love, hope and faith.... because heaven knows we had no money! hehehe... and here we are today... almost 23 years later... older, wiser, (heavier) and more in love now than way back then.



We have been through sooooo much over the years... having our first child when we had been married barely 10 months didn't help us financially or emotionally, but there he was. He was our sweetie. Our sweetie who is about to turn us into IN-LAWS! That's right. This post isn't about Karl and me, but about Justen and the love of his life, Ravyn. We found out today that they are engaged and planning a wedding in August.



So there's a picture of what it's like to be young and in love - and about to begin a whole new life together. I wish them well. I wish them peace. I wish I had a genie to pay for the wedding! hehe... but seriously, Ravyn is a sweetheart and I've never seen my son happier. (By the way, he has had a hair cut since that picture.) I'll have to get another picture of them soon.

I thought of Lady and the Tramp when I was thinking about what to write tonight. I love that scene when they are sharing the spaghetti... anyway, here is a little video that I found and it reminds me of Justen and Ravyn: The Start of Something New: Staring Lady and the Tramp

Happy Valentine's/CHD Awareness Day!

Today is not only Valentine's day, but it's also CHD (Congenital Heart Defects) Awareness Day.

Congenital heart defects are the most common birth defect, affecting one in every hundred babies born. It is also the number one cause of birth defect related deaths in the first year of life. Nearly twice as many children die from congenital heart disease in the U.S. every year than all forms of childhood cancers combined. But unless you've dealt with it yourself, you probably didn't know that. In fact, I've taken care of my daughter who was born with CHD for 19 years and didn't even know that until recently! Wouldn't it be my family's luck to have both a child with complex CHD and a nephew with childhood brain cancer.

Jessica's story is so complex and long that I've never sat down and written it all out. If you want her whole story you probably could go to the hospital and check out all 5 volumes of her chart, LOL. I've written bits and pieces of it here and there. You can check this blog by clicking on "Jessica" in the label cloud - that way anything that I've written that I've labeled "Jessica" will show up. You can also go to JENSENLAND and click on "Jessica's journey with CHD" to read a synopsis of her life up until 2001. Below I'm going to write about the beginning of her life and how we discovered that she had CHD - and how she almost didn't make it due to the medical community's inability to recognize that Jessica was in congestive heart failure - and our lack of knowledge about CHD and it's signs and symptoms.

Miss Jessica Jensen was born on June 3rd, 1988. She came quickly and they had to grab a doctor out of the hallway to catch her as she was born. What a little stinker - so anxious to get here and she had to do things her own way! Not necessarily the easy way - but HER way none the less! So would be the pattern throughout the rest of her life. (hehe... ) The doctor told us that she had a heart murmur but she should be fine. She was sent home with us the next day and we must have been told 100 times to not worry about her heart murmur. It was most likely just the ductus that hadn't closed yet and to take her home - just be sure to take her to her 2 week check up. Jessica was also born with polydactyly - two extra fingers and one extra toe. I had been born with the exact same extra fingers and toe (even on the same foot). Karl and I were so concerned about her extra fingers and toe that we didn't worry about the heart murmur - especially since everyone kept telling us it was NOTHING! During the next two weeks Jess was having feeding problems so I took her with me to a breastfeeding specialist. Of course said specialist watched Jess latch on and eat (which she only did for a few minutes) then she would pull her head back and catch her breath. I was told that she only needed more practice and showed me how to hold her differently. pah! Also during that time Jess looked quite yellow so we went to see the doctor - who was busy so a nurse practitioner saw us. She sent us to get blood drawn (which was normal) but not once did she mention a heart murmur! We talked about the polydactyly and who would perform the surgery, etc. After we got home and put her in her seat in the sun, my mom asked me if she "always breathes that fast"? I figured that the NP had just seen her and didn't say anything then she must be ok. Fast forward to the day before our 2 week appointment: Karl and I were apartment managers so we had the responsibility to clean the pool... while Karl was cleaning, a cap broke off and he inhaled chlorine gas! He came into the apartment coughing like crazy and called poison control. He was told to go and have a steamy shower to help his lungs. While he was in there I could hear him coughing so hard I thought he was going to die. I called poison control back and they said to go to the ER. We then spent the afternoon in the ER with our (now) good friend, the pulse-ox. They told us that Karl had pretty much burned out the inside of his lungs and could easily end up with pneumonia. They let us go home once his pulse-ox got up to 90%. Of course the doctor and nurses would come over and look at Jess and say, "Oh, how cute" (when they should have said, "Why is she so blue?!" That night was horrible. I was exhausted and scared, Karl tried to sleep in-between coughing fits, Justen (2 yrs old at that time) slept well and Miss Jess acted sooooo sick. She would latch on, suck really hard and fast for about 30 seconds and then yank her head back gasping for air. I thought that maybe she had to burp so I put her up to my shoulder and she would fall asleep. I would even try to wake her up to eat but she was too tired. 1/2 hour later she would wake up starving and she would repeat the cycle all over again. Little did I know that she was in CHF (congestive heart failure). The only reason I didn't drive her to the ER myself was that I kept reminding myself that she had her appointment with the doctor the very next day.

The next day I took her in and the first thing the pediatrician said was, "Is she always that blue?" I had no idea what "blue" was. She had always been that color that I could remember - besides, I had only had about 2 hours of sleep in the previous 2 days so I was a little off my game. The doctor left for awhile and then came back in and told me that I had an appointment for Jessica with a pediatric cardiologist in 2 hours and to NOT MISS IT! I went home and picked up Karl after dropping Justen off to stay at a friend's house. Poor Karl was still soooo sick and pale. We met Dr. Donnerstein and we started our road to being parents of a child with CHD. An echocardiogram was done and it seemed that one doctor after another was brought in to see it. Karl and I, both exhausted and worried, were told that they couldn't see any way that Jessica was getting blood to her lungs! He said that the ductus could still be open but they couldn't see it - and if it were to close then she would DIE. They needed to do a cardiac catheterization to see clearly what was going on and she would have surgery THAT VERY NIGHT - they couldn't wait until the next day. [Karl and I were in shock. It was all a bad dream! Wasn't it? I had never heard that babies could have heart problems!] Jessica came out of the cath at about 11pm and we were told to go home - she was too sick to for surgery and during the cath they found that she had grown some collaterals that were feeding blood to her lungs. She was admitted to the PICU and was in critical condition. Her lungs were full of fluid from CHF (congestive heart failure) and she was started on multiple heart meds. We were told that if we had waited even one day longer, she probably wouldn't have survived. The next several days we were told that they wanted to hold off surgery for just one or two more days - until she got stronger. The next week we were told to take her home! The heart medications were helping and she needed to get bigger and stronger so she would have a better outcome with surgery.

Jessica was diagnosed with Pulmonary Atresia, VSD (ventricular septal defect), Pulmonary Stenosis, Pulmonary Artery Stenosis, Overriding Aorta and Right ventricular hypertrophy (also known as Tetralogy of Fallot)

For months I didn't trust myself to know how to care for her. I missed the signs of CHF, what else would I miss? Would she die this time? To make things worse, she was very fragile and every little thing would set her over the edge... fighting for her life. Just to give you an idea how sick she was, she was hospitalized over 35 times in the first 2 years of her life. A few of these hospitalizations were for heart surgeries or procedures, but most were for respiratory infections or other illnesses. Her heart was struggling just to maintain life - she couldn't fight off a virus without help. She only weighed 10 lbs when she had her first surgery at the age of 5 months old. She started life at 6lbs 12oz. We jumped for joy for every ounce this little girl gained!

Now here we are.... almost 20 years later! Finally not worrying about trying to get her to gain weight - although I worry about her gaining too much weight now! LOL! We still deal with so much every single day, but she is sooooooo worth it!

The one thing I really want to stress is the lack of CHD screening. If the doctors had done an echo before sending Jessica home with me, we would have had a diagnosis right away. She never would have been in CHF for two weeks at home and I would have gotten the information about CHD before taking her home. I know that God has a special reason for keeping Miss Jess here but knowing that she almost died because of lack of screening makes me furious! There are other babies who do die because their CHD isn't found until too late. Other CHDs aren't even diagnosed until later in life and sometimes damage is done to the heart that makes it irreparable.

WE NEED BETTER SCREENING FOR OUR BABIES! I have to say that every niece and nephew that are born near me not only get lots of cuddles and smooches from me, but I watch their breathing, check the color of their cute little lips, tips of their noses and all their fingers and toes. MY CHD screening - free of charge. LOL!

The banner isn't showing up right and it's almost 3am - I'm going to have to fix it later. Until then - have a great CHD Awareness Day!



Of course I don't want to forget to honor all the angels who have not survived their CHDs. The most recent angel being Paige. We have known and loved so many children who have passed away to CHD... our hearts break for their families who are left behind and yet we still push ahead, hoping for more advancements in the medical field to help our children grow, laugh and love.

'Til We Meet Again, President Hinckley

I am a little late in posting my little tribute to President Gordon B. Hinckley, but I really want to post it anyway. President Hinckley inspired people around the world and was loved by so many. Even though I never met him in person I feel like he was a close friend.



Good bye, President Hinckely, until we meet again.

Update/prayers for my nephew & latest on Jess

It's 5:30 am and I just got Miss Jess back to bed... again! She's not feeling very well and not sleeping well either. I've been sick most of the week and haven't gotten hardly anything done. I had high hopes of being able to accomplish something today - like taking down Christmas decorations! - but I think I will be sleeping as much as I can instead. *sigh* Since I'm up I figured I would go ahead and ask for some information and prayers for my nephew.

For those of you who don't know about my nephew, here's a quick background: Oct of 2006 at the age of 15, my nephew, Marcus, was diagnosed with anaplastic astrocytoma. The very next day he had surgery to remove it. He has gone through radiation and chemo and finished the maintenance chemo in Oct of 2007. Now he is supposed to have MRI's ever couple of months. Marcus started having a lot of pain in his legs and they have been giving out on him so they did an MRI ahead of time to see if the astrocytoma has spread to his spine and it came out clear. *big sigh of relief* although we still have no idea what could be causing the pain and sudden weakness in his legs. But wait.... there's more:

Here's what my sister wrote on Marcus's carepage:

"I know that was a big relief, Marcus's last MRI, and all is good in that department. But... we got a call the next day from the doctor that we saw that day. She said that she decided to look back at his last MRI reports and found something that she didn't know if we had been told about. She told John (the dad) that there was a "thickening" on the meninges caused by the radiation, but it was benign. I called her back this last week to clarify a little more. She said it was "meningioma" which to me and the research I have done, is another tumor that is mostly benign, but some can malignant. She didn't use the word tumor, but sounded pretty sure it was meningioma caused by radiation and that it has been on his scans since AUGUST. She said that if it gets bigger that they would send it to Neuro-Surgery and they would discuss surgery to remove it. To me that sounds like a tumor. Marcus's Dr. has been out on Personal leave so things have not been very well managed, in my opinion. So we are trying to decide as to what to do. We are looking at a second opinion at National Children's Hospital in D.C., plus we are looking at another Neuro-radiologist to read his scans again. With the advice of another Doctor, she thinks that having meningioma this early after treatment is almost rare-to-none. Anyway, sorry for rambling, but I just wanted you all to know what we are thinking about doing, and if you could keep us in your thoughts and prayers that we make the right decision. It would be deeply appreciated.
Thanks so much,
Karen"

If any of you have any experience with brain tumors or radiation/chemo complications, please email me or leave a message here. You all are such an awesome resource of information and support! We appreciate any prayers or well wishes too. Marcus's carepage name is MarcusRussell or click on www.carepages.com and then enter his name (no spaces).

Here's something that my sister didn't put on Marcus's carepage so shhhhh, I'm letting you all in on a big secret: The Make A Wish foundation came to visit Marcus and they are working on a wish for him! It may involve fighter planes or going on a trip... OK, that's enough info until Karen announces it on the carepage (or her blog). But like I said... it's a SECRET! ;-)


Last but of course, not least: We got the results from Jessica's last holter monitor. She is still having around 10,000 PVCs a day but seems to be having more symptoms OFF the medication so for now we are leaving her on it. I figured out that she was having tummy aches from taking the Procanbid right when she got up along with her Carafate so I have held the Procanbid until after she eats along with her other "morning" meds - which has to be an hour after taking the carafate. Unfortunately, sometimes I am slow to get her meds to her and so she has been taking the Procanbid more like 2 - 3 hours after waking up and the last few days she has been having more symptoms of her heart beating hard. It could be from the delay in giving her the Procanbid which makes me sad to think it could be my fault. But Jess has been sickly all week so she could be having break-through symptoms. It's hard to tell... and with me feeling horrible all week and not getting much sleep at night it's been a miracle that I've been able to give her all her meds. Thank goodness I have a meds schedule on the inside of the cabinet.

OK... enough whinning. Time to go to bed, set my alarm to get up in a few hours so I can cancel an appointment for Jess with her psychologist for this afternoon since it's supposed to be rainy, cold, windy and I just can't take Jess out in that type of weather. Besides, we haven't had any sleep. Then hopefully Jessica's aid will come and I can have a looooooong nap. Did I mention that as soon as we started feeling sick last week Jessica's aid got quite sick and was out all week? Fortunately we only went 2 days without an aid and an old friend/aid was able to fill in for the weekend. Otherwise I'd be in a padded room for sure! I hope our regular aid is feeling better. She's a single mom and it's gotta be hard going at it alone! Besides, Jess misses her. awww... Well, I can hear the wind starting up already and soon Karl and the boys will be getting up and going for their day.... Hopefully the next post will contain pictures that I keep promising you!

Sweet Paige

It is with a very heavy heart that I write this post. Miss Paige became an angel yesterday afternoon. She seemed to be making tiny improvements but her body just could not handle all the ailments anymore. I knew it would probably come to this but I am shocked just the same.

As I mentioned before, I met Paige's mom, Jenn, in person. I shared a room with her and Cathy for a few days in KS at a CHD quilt show. It is amazing to me how much I have come to love my CHD friends that I've met online and it's amazing to meet them in person. We are like a family - or a club - an elite club that nobody wants to be a member of..... but once you are in that club you find a whole community of people who KNOW. They know what it is like to watch your baby breathe, wondering if each breath will be her last. They know what it is like to hand her over to a heart surgeon, wondering if you will ever see her again. They know what it is to live in the hospital dealing with many tubes, wires, medications and then to take her home only to worry more because you don't have the monitors, nurses and doctors right there to help you care for her. And then they know the fear of every parent - the fear that their child could die... only ours do die from their heart defects. I can not even count all the children that I've "known" who have died from their CHD. It is hard to know a child and then watch them slip away. It's hard to see their parents grieve. It's hard to know that yours might be next.

I want to cry, scream, kick and throw a temper tantrum that it's NOT FAIR! Paige fought so hard and her family was so diligent in caring for her. Her mom, Jenn, is my hero - she gave everything to be by her daughter's side for so long and so far away from home. And now she has to go home without her baby. My heart is broken for her.

Paige, sweetie, you will be missed soooooooo much. I know there was a reason you were born and that your life was so short. You have touched so many lives and fought the good fight. Now you are safely in your Savior's arms. Here is a song that makes me smile - it actually makes me cry thinking of how awesome it will be to meet Him after this life is over.



Paige, you returned with honor. I can just imagine you dancing at His feet.

URGENT PRAYER REQUEST

I am sending out an urgent prayer request little Paige. Paige has been in the hospital with one complication after another since her heart surgery in September! She was transfered to a hospital several hours further away from home in order to get the care she needed. It's been a terrible strain on her family. I have asked for prayers for her in the past and now I ask that you spread the word about Paige as she is in desperate need of prayers right now. As I have mentioned in past posts, I met Jenn in KS a few years ago when we attended a CHD quilt show. Jenn is one of the sweetest people I've ever met.

Her mom writes:

To day is a bad bad bad day, she is unresponsive and sleepy...
Her heart rate and sats are good but the PLE is taking a toll on her body and they can't control it.. Please pray, chant, dance or do whatever it is you do... We need them... I have called all family to be here.

Things sound really bad - just when it seemed that Paige was making some improvements. Here are the photos that I have of Paige and her family - they were at an uncle's wedding shortly before her surgery in September of 2007.





Jenn was recently able to set up a carepage so she could update everyone on Paige's progress. To go there and offer support, go to Carepage home sign in or register (it's free), click on "visit" and then type in PaigeMarieBennett (no spaces). Please leave messages of support for them. They have been through so much and it breaks my heart to think of what may happen in the next 24 hours or so.

Thank you.

UPDATE 1/20/08
Paige is improving slightly every day. She is still a very, very sick little girl but she is making some progress. Jenn, Paige's mom, gives daily updates at the carepages website. The information on how to get there is above. Please go there and offer your support.

Thanks again!

Update on Miss Jess - NOT what I wanted to hear

*warning* may contain rambling and random changing of subjects.

Jessica recently had a holter (heart) monitor to see if the Procainamide was helping cut back on how many PVCs (premature ventricular contractions) she is having. If you will remember, back in August Jessica wore a holter monitor and I posted this: the last holter test done in 2004 showed 147 PVC's in 24 hour period. This time (August of 07) she had over 10,000 in 24 hours. That's a significant (HUGE!!!) difference. The PVC's are caused by her right ventricle getting more and more enlarged. The doctor said "her heart disease is progressing." He hummed and hawed for awhile and I knew what point he was avoiding... he finally came out and said, "I've known you for a long time and so I might as well say it... (and after more beating around the bush he said) it can be fatal." He said that normally he would treat the PVC's with a beta blocker, propanalol, but that can aggravate her asthma. (that's the exact same thing the pulmonary doctor told us on Monday). If Jessica's asthma acts up, the coughing can cause the lung bleeds to start up again. That has got to be the scariest and most horrible thing we have ever faced.... so far.

After a couple more heart monitors we admitted Jess into the hospital to try a heart medication that could help prevent the PVCs. I posted several posts on this blog about that 5-day stay in the PICU. If you want to read them, click on "Jessica" in the Label cloud and scroll down until you find them. Those posts would be on Sep 25 - Sep 30. Previous to that are posts that lead up to me realizing that something was terribly wrong.

So... that brings us up to the most recent holter monitor which we did just over a week ago. The Pediatric Cardiologist called me this afternoon and told me that on that monitor she had 9,000 PVCs!!! He also told me that in September she had 9 episodes where she had two PVCs right in a row (couplets). This time she had 300 couplets! WHAT IN THE WORLD??? Obviously this medication is not helping. We discusses the possibilities of what could be going on. It seems that she doesn't have many PVCs while she is sleeping and then when she is awake and doing stuff her heart is going crazy. I suggested sedating her 24/7 but he didn't go for that. LOL *sigh* I told him that a couple of days ago Jess had a giggling attack watching our silly cat and I could see her turning more and more blue. I took her to her room and slapped on the pulse-ox just for kicks and it was 49%. After about 5 - 7 minutes the pulse-ox was up to 70% so I let her take it off. Dr. D wondered if her being so blue was causing the PVCs but now that I think of it she didn't seem to have any PVCs during that few minutes that she was so blue.... but that was only 5 minutes of 24 hours so it doesn't really mean much.

We also talked about how Jessica is feeling. She seems to be having fewer episodes where her heart hurts or it "feels like it's going to jump out of her chest" but she still does have some of those times. She also told me two nights ago that sometimes it feels like her heart is going to explode out of her chest. I didn't realize that it hurt that much! Dr. D and I think that she possibly could be experiencing a placebo effect where since she is taking medication to make her heart feel better, she doesn't feel them as much because she truly believes it is working. Obviously I'm not going to be telling her that the medication isn't working - at least not right now.

Dr. D is going to talk with the electrophysiologist on Monday and see what he has to say. They may want to admit Jess to the PICU again and try a different medication or maybe even give her a placebo. Those are pretty much our only options. The electrophysiologist may say that since once medication in this category didn't help at all, we may not want to risk any other meds in this class since some of the side effects can be severe - and even fatal. Soooo..... we are pretty much at the dead end..... there may be a rocky path beyond that dead end but all evidence shows that her heart disease is progressing and quite rapidly! Jessica has been having more generalized pain and is requiring more morphine, she tires extremely easily and she gets very blue very easily. I just have one question: HOW DID WE GET HERE? No matter how long I try to prepare for this I just can't believe it is happening. I have no idea how much time we have but the couplets lead into tachycardia which can be fatal. If she survives tachycardia episodes, I understand that they are very uncomfortable and even cause patients to pass out. Part of me keeps thinking of all the times she came close to death and then survived... she even survived all those lung bleed - and she even beat hospice! So the natural feeling is to believe that she will ALWAYS pull through and be OK. But we knew there would come a time when she would deteriorate and I have known that it's happening. She didn't have much energy to go to school last year - only about 4 times the whole school year - and I've taken her once so far this year. I took her to her class party right before Christmas (excuse me) winter break. Who knows... we may need hospice again sometime soon.

Don't get me wrong, her life isn't total doom and gloom, she enjoys life more than anyone I know! She loves people and spending time with them. Lately (the last couple of years actually) she has either chosen not to go to a cousin's birthday party or other big gathering or once we are there, she "hurts all over" and the noise really bothers her so she asks to go home right away. She enjoyed having a lot of family come to our house on Christmas Eve. I think she was running on adrenalin! LOL We had a great time and a couple of times she went into her bedroom to rest and then came back out to visit. I plan on posting Thanksgiving, Christmas and other photos soon.

I know that my daughter has been loaned to me by a loving Heavenly Father who has sustained us through many difficult trials and He will continue to sustain us. Jess came so near death during her 2nd heart surgery (she was 3 yrs old) and then again 4 days afterwards that Karl and I have felt like we have been living on borrowed time since then... but no matter how much time we have we'll always want one more day, one more hug, one more giggle and one more smile.... and even one more phone call when Daddy and I are out on a date. lol

I had better get to bed and try that new invention people keep talking about... I think they call it sleep. At least by now I'm so tired that I may be able to actually sleep and not lay there crying..... you see, Karl has been in Phoenix all week and won't be home until much later this afternoon - yes, it is Saturday now. *gasp!* I didn't tell him the results of the monitor yet since he has a meeting this morning and then has to drive home. I didn't want him to have to go through a meeting and then drive home while trying to deal with this new, devastating news.

Anyhow... I appreciate any uplifting comments or hugs. I appreciate you all!

"You're Wiser Than You Think"

My Mom emailed this video to me and I just had to share it here. It is short but worth every second of it! Enjoy:



Here is more information about the video:

(A FrankLozano.com Production) Little did I know when I was given the audio to this phone call that it would become SO HUGE. When I produced this video, I knew it was special to ME, but never would I have guessed when typing the text and editing the music that it would literally touch MILLIONS. I am proud to have put this video together for the world to see and hear. We have had a lot of requests to replay the phone call that Pastor Mike shared during our church service on Sunday, Nov. 11th, 2007.

Here you'll find the video clip that I created just for you. After our church service I placed the video on YouTube so that you can watch it and share with family and friends.

Logan is a 13 year-old boy who lives on a ranch in a very small town in Nebraska. Logan listens to Christian Radio station 89.3FM KSBJ which broadcasts from Houston, TX. Logan called the radio station distraught because he had to take down a calf . His words have wisdom beyond his years.

Since airing the audio of the phone call and now the making of the video clip, it has taken on a life of its own. People are forwarding it all over the world. We encourage you to share the love of Christ with anyone you can.

(**Sky Angel is a family safe broadcasting service that is offered on satellite. KSBJ is a local Houston Christian music radio station. Video clip produced with love by me, www.FrankLozano.com Hear the entire message at www.ValenciaHills.com)