FRIENDSHIP FRIDAY

I'm trying Mr. Linky for the first time. Mr Linky is used for memes and other blogging events where people (besides me) want to participate and can easily leave their information including their name and blog link so that you can go and read theirs too.

This first Mr Linky meme is Friendship Friday. I'm not sure where or when Friendship Friday started but I think it's a great idea. One can never have too many friends! I may come off sounding like someone who has just won an Oscar and people are motioning to me, trying to get me to shuddup and sit down already. The music may begin to play and someone may start to pull my arm trying to drag me off stage, but there are really so many people that deserve mentioning. I promise my next Oscar acceptance speech Friendship Friday won't be quite so long.

I'm especially thankful for my friends right now since finding out that Jessica's heart disease is progressing. So many times I have received bad news about Jessica and my heart sinks... I feel like throwing up and I go into a depression. I get angry and want to yell at God. Hasn't this child suffered enough?! I have realized that these are normal emotions and I allow myself a couple of days of mourning... a couple of days to digest the news and let reality set in. I begin to seek more information about the diagnosis and prognosis. What are our options - if any? I also begin to realize that I don't need to go through this alone. I have a wonderful husband who loves me and loves his daughter beyond measure. We have had to pull through so many devastating blows over the years.... many marriages have broken up over much less and I am soooooo glad to have my eternal companion still by my side. He is my BFF. I know, I know... many people say that your spouse doesn't count as a BFF ("Best Friend Forever" for all you non-texting people - *hi Mom!*) ... but my husband is my BFF. I am so blessed. Did I mention that I love him and that we have been married for 22 years?

We are also blessed to have family who care about us and who check in on us from time to time. I am also thankful for my other family... my church family. Two weeks ago Karl talked to our bishop and told him about Jessica's new diagnosis and how hard it is that her heart is deteriorating. The bishop asked our ward (congregation) to please keep Jessica in their prayers. Jessica's name was mentioned in very single prayer that day. For all you LDS people out there, you know that's a lot of prayers! ;-) Many people came up to Karl and offered comfort and concern. I was at home with Jessica and Karl came home with tears as he told me of all the people who were praying for us and for Jessica. My visiting teachers came over and wanted to know how they could help. I finally conceded to allow them to bring in dinner for Thurs night. (which they did. Jessica asked for tacos and they brought tacos, beans and spanish rice! Delicious!) And to top it off, later that evening another family from our ward, the Womacks, came to our house riding their horses! The Womacks are the ones who came to Jessica's birthday party dressed up as Jack Sparrow, Elizabeth Swan and Will Turner. The Womacks came on 4 horses and Jessica got to go outside to pet them. After a few minutes they offered to let Jessica ride one! It has always been Jessica's dream to ride a horse. 3 years ago a pony was brought to our house but she was too nervous to get on it. This time we had 4 full-grown, BIG horses and she wanted to ride one! Karl and another gentleman from our ward helped boost Jessica up into the saddle while Sister Womack held the reins. The horse, Penny, kept stepping aside a little and there was Karl and Brother Mack hoisting Jessica into the air with her legs in a sideways "V" trying to get onto the silly horse! haha! Fortuntatley that only took a couple of minutes and then Jessica was sitting in the saddle! She was so proud of herself that she even knew to hold onto the horn of the saddle. I took pictures as Sister Womack led Penny slowly down the street, Karl walked along side by Jessica just "in case" and Justen pulled the oxygen tank in the cart trying desperately to keep up and not let the oxygen fall or the tubing get tangled. What a sight we must have been! Well, Jessica rode the horse for about a whole minute - then she wanted to get off. She didn't even want to ride her back to the house... she was done. LOL. Fortunately we weren't more than one house distance down the road so we slowly walked back to our house. (If Jessica walks very far or very fast she gets extremely "blue" and short of breath.) All this time Brandon had been holding the reins of Sister Womack's horse, Sophie. Sophie was enjoying eating our lawn. (Ok... it's not a lawn so much as weeds with some grass mixed in due to our very active monsoon season. Most of the year we have just dirt and a few dry weeds.) Brandon did a very good job making sure that Sophie didn't wander into the street or poop on our vehicles. hehe... We are very fortunate to have such wonderful friends who made helped make one of Jessica's dreams come true. [I will have pictures of that event soon. Jessica wants them on her blog so I'll let you know when they are up over there.]

I absolutely have to mention the online friends I have made. 7 years ago I got the internet in my home and started joining support groups for families with children/adults with CHD (congenital heart defects). I have come to know and love so many of those families and have even gotten to meet some of them in person! When I sent an email to those groups and posted here on my blog, I was overwhelmed with the love and support shown to me. I also received a couple of emails from families who have experienced similar situations and have used some medications. Those assisted me SO MUCH when I spoke to Jessica's pediatric cardiologist. Gone are the days when I felt so alone, bewildered and unprepared. It's true that Jessica is especially unique and that there is probably nobody who has experienced ALL the exact same medical problems that she has, but it is comforting to have families who have experienced some of the same problems or have used some of the same procedures, or the same drugs. Since I've started blogging I've made even more online friends who are just as wonderful. I don't get out much and the internet is my window to the world - my way of reaching out to people, both in sadness and in happiness. I appreciate you all so much!

I can't forget to mention all the medical people out there that have blessed our lives. I know that you've heard about the home health aid who stole Jessica's morphine and the insurance company employees who can't seem to keep things straight but that is a drop in the bucket compared to all the wonderful people who have helped Miss Jess and our family. I've had to take Jess to the hospital 3 times in as many weeks for different heart monitor placements. Today we went for the 3rd one and we keep running into people that we know from previous hospitalizations. The nurses at the hospital, doctors who have cared for her - such as Dr. Copeland who did Jessica's heart surgeries, child-life workers who have helped her through several of those surgeries and many other procedures.... Tu Nidito social workers and volunteers..... the list goes on.

And last, but definitely not least... I like to think of my Heavenly Father as my friend. I may get mad at Him at times but He always offers a loving shoulder for me to lean on. I have seen so many miracles and I have been so blessed to be Jessica's mommy, even with all her medical, mental and emotional problems. Jessica asked me recently if Heavenly Father and Jesus cry when we are in pain and when we cry. I answered yes, they do. I have felt the compassion and love from above that I have offered to my own children.... especially through all the heartaches and pain that we've experienced with Jessica. My sons are highly affected by their sister's medical issues, and they each have their own issues they struggle with, but they are awesome and are 3 of my greatest friends too.

Now it's your turn. I know it's now Saturday but I started this post on Friday! lol... but it doesn't matter. If you want to do a "Friendship Friday" or just a friendship post, click on Mr Linky and leave your information! Don't forget to leave a comment too.

Mr Linky is up and running! I set it up differently and it's working! Woot!

AUGGHHHHHHHHHH!!!!!!!!!

OUR INSURANCE COMPANY IS STILL DENYING JESSICA AS A DEPENDANT!!!!!

***banging my head against the wall***

I just got ANOTHER call from the oxygen supply place saying that the insurance company is denying that Jessica is a dependant saying that WE have not updated Jessica's student status. We took care of that 2 months ago!

I guess I will put that to the top of my list of idiots to call today. I'm up to 6.

One last thing... Is the name Evelyn a man's name?

Holter monitor #2 results

Oh, where to begin? .... I think I'm on information overload.

Jessica's most recent holter monitor showed slightly less PVCs but not a significant difference. *huge sigh* But I didn't really expect it to be any different.

We decided not to try the beta blockers for the PVCs since we cannot risk Jessica's asthma acting up. It would be bad enough for her to be coughing and having trouble breathing but we just can't risk the asthma causing the lung bleeds again.

I asked about other medications and we discussed our options. We may try to put her a medication to get rid of the PVCs (Mexiletine - thank you Chris Molnar for that info!) but it has the possible side effect of causing more arrhythmia problems - Dr. D. has emailed two of the other peds cardiologists (who are electrophysiologists) to find out their thoughts. If he doesn't hear from them over the holiday weekend then he will talk to them on Tuesday. They will most likely want to start the meds in the hospital so if she has any problems then they are right there to monitor it. These new meds will not prevent tachycardia but could help Jess be more comfortable by getting rid of the PVCs. The only thing to do for the tachycardia is to implant a defibrulator. Many studies have shown that the meds don't prevent the life-threatening tachycardia and that's why they invented the defibrulators that they can implant.

We decided not to implant an ICD (defibrulator) since it has too many risks for Jess and all her bleeding and blood clotting problems. Dr. D had talked to both of the electrophysiologists last week about it and everyone agrees that it's not a good idea for Jessica. As I posted before, the ICD would have a lead in her ventricle and it could cause a blood clot to form and with Jessica's large VSD still open, the blood clot could go directly to her brain if it were to break off. Jess has already had 2 devistating strokes. To counteract the blood clots from even forming, they would have to put her on a blood thinner but we can't do that due to the past lung bleeds.

Jessica's heart disease is obviously progressing and we are on a downhill slope. We have no idea how quickly she will continue to deteriorate or she could plateau once again.

It is scary knowing that she is having arrhythmia more than she is having sinus rhythm. It's also scary knowing that at any point she could have ventricular tachycardia that could be fatal and at the very least could make her pretty sick. She could also pass out and get hurt.

Yesterday as I was getting ready to have my shower Jess came and told me that her heart was beating hard. I told her to go and rest and I would come and check on her after my shower. A couple of minutes later I thought I heard her crying. I suddenly wondered if she could be having a tachycardia episode so I hurried and checked on her. She wasn't crying but was uncomfortable. The wind was blowing and my tv was on in my bedroom and I think the two combined must have been what sounded like her crying. At least she was ok.... this time.

As they say..... ignorance is bliss. Two weeks ago I didn't have any idea what was going on.... now I can't stop thinking about it - not even when I sleep.

My new mantra is: "Just keep swimmin"....

or more like: "Just keep praying... just keep praying."

Thank you again for all the wonderful emails, messages and your thoughts and prayers.

Jessica's heart monitor results

I talked to the PC on Friday regarding the holter monitor results and they are not good. Dr. D is very concerned. He said that the last holter test done in 2004 showed 147 PVC's in 24 hour period. This time 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.

He said that he will talk to one of two other PC's who specialize in the electrical workings of the heart and see if they have any other ideas. One of those doctors is one that we've known for many years (he was a resident at the hospital when Jessica was a baby. He left and did the rest of his schooling, etc, and came back a few years ago as a PC. He remembers Jessica well and said that they used to call her a "frequent flyer". lol) Dr. D will be out of town doing clinics until Wed afternoon and that's when he will be able to talk to the other doctors.

Dr. D asked if Jess was on any type of stimulant and no, she isn't. I read him the list of meds she was on and then mentioned that the pulmonary doctor had taken Jessica off caffeine. He didn't know if that would cause Jess to have more PVC's but we decided to do another holter monitor this coming week to see for sure if that had anything to do with the increase in PVC's. Dr D also mentioned that another possibility is to do a pacemaker with defibrillator but of course that would require surgery. I really don't know a whole lot about that and I know that type of surgery is very minor compared to what Jessica has been through... but it will take a lot of thought, research and prayer to decide whether to do it or not. Jessica has repeatedly asked to never have another surgery. She is terminal - there is nothing more than can be done to fix her heart and she isn't a candidate for transplant.

I worry about talking to her about it because she has so much anxiety as it is. She can't fully understand what is going on with her heart so she isn't capable of making that type of decision. She does know that her heart is getting worse. She tells people, "every year my heart gets sicker". She is all too aware that she can't do things that she used to be able to do and when she was having the lung bleeds she knew she could die from them. She would be crying until about 4am saying that she doesn't want to die. She has always had separation anxiety but it's been heightened 100xs by going through that.

Jessica has not been complaining of the PVC's nearly as much since she did the holter test. Either the little bit of caffeine was causing a lot of PVC's or she is more calm because she knows she is being taken care of. She has not even asked me what the monitor said. She is comforted knowing that we did it and that Dr. D is taking care of her.

My heart is heavy trying to cope with this news. Jessica has had heart monitors before and they have always come back ok. I was not prepared for this news. Dr. D is concerned about the sudden increase in the amount of PVC's. We saw him just over a month ago and she was doing well. Dr. D is retiring soon and we are to see a different PC starting in December. I chose Dr. K since he was the one who did Jessica's cath a few years ago and did an excellent job. He listened to Jessica and to us. We have known him for several years and I feel confident that he will do everything possible to help Jessica be as comfortable as possible.

Please keep Jessica, Karl and I in your prayers. We may have some tough choices ahead of us and we need God's guidance. We appreciate your kind words and love so very much.

I forgot to mention that other possible side effects of the beta blockers are deep depression and fatigue. Miss Jess already battles both of these.

Jessica's pulmonary doctor's visit

As I mentioned before, I took Jess to the pulmonary doctor on Monday. The pulmonary doctor felt that Jessica's lungs are doing quite well. Jess is on several asthma meds and they are doing a good job. yay! We discussed the morphine and Karl asked why it is preventing the lung bleeds. The doctor said that she honestly doesn't know but in other patients it has helped with hemoptysis (coughing up blood) but nobody knows exactly why. Possibly the morphine helps to relax the pulmonary arteries and lungs and therefore preventing the lung bleeds. Not many people have the exact same cardiac and pulmonary artery anatomy that Jessica does that are still alive so it has been challenging to know exactly how to help her. [hemoptysis can have many causes - for instance, my friend June has a son with cystic fibrosis and they have dealt with hemoptysis too] As we were talking with the doctor, Jessica's left leg started shaking. It does that from time to time and it looks like a tremor. This shaking lasts from 5 - 10 minutes usually is it bugs Jessica. We discussed what could be causing the tremors and we realized that it's always the left leg. The last (and worst) stroke causes paralysis on Jessica's left side and when Jessica is tired her left eye wanders more than when she is rested. Jessica had been up crying until 3am and then we had to get her up to go to the appointment byt 11:30am. So Jessica was overly tired and the leg tremors could possibly be residual effects from the stroke she had all those years go. The doctor asked us to try to see if there is a connection between her being tired and the leg tremors. Then the doctor asked what Jessica was drinking and it was her diet coke. Jess is only allowed one diet coke a day, she has to have it finished by 2pm (so it won't keep her awake at night) and some days she doesn't even have any. The doctor said that for someone with anxiety and sleep problems along with the tremors and heart arrhythmias should NOT have ANY caffeine. Poor Jessica started crying when we were driving back home. She loves her diet coke. We had discussed caffeine-free diet coke but the silly girl insists she loves her diet coke. We had 3 more diet coke bottles in the fridge and we told her that when they are gone - they are gone. We have come up with some alternatives to the diet coke and she has been off caffeine for 2 days now.

We talked to the doctor about the arrhythmias that Jessica has been experiencing and she said that if the peds cardiologists want to treat them with a beta-blocker, they need to contact her since they could potentially aggravate Jessica's asthma.

Update on Jessica's Possible PVC's

Thank you, everyone, for your comments and emails. I contacted two friends who are nurses (one is an online friend and the other is my next-door neighbor who is assists in heart surgeries) and both of these ladies felt that Jessica's heart rhythm wasn't urgent. I was still nervous but glad to know that it wasn't urgent and that we could wait until Monday.

I called our peds cardiologist Monday morning. (as we are getting ready to take Jessica in to see her pulmonary doctor - a regular follow-up appointment). I talked to the cardiologist, Dr. D, and he wanted to know if I felt she should go in for an EKG or if she was going back into her regular rhythm on her own? I felt that she was in rhythm more than not but as I was talking to him I put on the pulse-ox just to make sure. He could hear the beeps over the phone and he said she was having good strong, regular heartbeats and I agreed. He asked me if I thought she should have a holter monitor or an event monitor. I asked for a holter monitor because she has had so many "episodes" over the weekend I was pretty sure that it would show up on a holter monitor - and that we would get an answer much sooner. Dr. D is so cool... he went right upstairs and filled out the paperwork for the diagnostic clinic to call us to schedule the holter. Then he called to tell me to confirm that the paperwork was in and as we were talking, the diagnostic clinic called me to schedule the holter! That was FAST!

So we went to the hospital and got the holter monitor placed today. It will recored Jessica's heartbeats for 24 hours. I need to keep a log of when she complains of an "event" - what time it happens and what she is doing. I also need to log when she eats and sleeps, etc. The monitor automatically shuts off after 24 hours straight and then I can take it back to the hospital.

For those of you who may not know, an event monitor is similar to the holter except that it doesn't save the information unless you press a button. When you press the button, it saves something like the previous minute plus several minutes after the button is pressed. It will hold 3 recorded episodes and then you have to call it in and transmit it by phone. These monitors can be used for up to 30 days. I know that the doctor would contact me sooner if there was anything going on but I thought it would be best to have the holter monitor just in case her heartbeat is irregular even when she doesn't notice it.

So far she has said that her heart is beating hard 4 times. She is so funny.... she said it felt like a frog was leaping from one lily pad to another. I asked her if I was supposed to write all that in the log?! LOL Tonight two of the leads started to peel off so I helped her replace them. Of course I wrote that down on the log.

Hopefully we'll hear something within a few days.
ps
I have much more I want to write but it's 2:35am and I have to help my boys get off to school in the morning. Maybe I can write more later tomorrow today.

Jessica's PVC's???

Jessica has been complaining that her heart is racing. She complains about that from time to time and has for several years. In fact, on her 16th birthday she was on a heart monitor because of those types of events. Each time she's had the monitors, they come back with a few PVC's (premature ventricular contraction). As I understand it, that means that the ventricle (bottom half of the heart) contracts (squeezes) more often then the atrium (top half of the heart). This afternoon she woke me up from a nap telling me that her heart was racing and I felt her pulse in her neck. Actually, all I would have had to do is look at it because her artery on the right side pulsates with her heartbeat. Anyway, I felt a steady rhythm but not of a normal nature. So I went a hooked her up to the pulse-ox (machine that measures the amount of oxygen that is being saturated in the blood). The pulse-ox also has the heart rate on there. After a few minutes everything looked fine for her and I turned it off. She still complained of being jittery so I gave her a small dose of lorazapam. After awhile she seemed to be more relaxed.

Tonight we had some problems with the oxygen concentrator and Jess mentioned the heart racing again. I wondered if she was having some anxiety of us having to call the oxygen supply company for a new concentrator at midnight but I hooked her up to the monitor anyway. I saw what I had seen/felt earlier in the day. She had a steady beat that wasn't too fast but it was like a hard beat then followed quickly by a small beat... then a slight pause then the hard beat then followed quickly by a small beat. It kept going so I decided to get out my camera and take a video of the pulse-ox machine. I uploaded it to Youtube and here it is:



I'm not sure if these are PVC's or something else. Jessica's pediatric cardiologist has always said that PVC's are pretty common and don't need treatment unless the patient has a lot of them right in a row. If this shows what I think it does, it looks like treatment is in order. My biggest concern is that I've been told that the meds for PVC's have side effects (of course) and one of the side effects is fatigue. Jess is too tired to do much as it is and I would hate for her to sleep her life away. *sigh* I know... I may be getting ahead of myself.

My question for all your heart moms and dads or adults who are heart patients is: After watching the video, do you think this can wait until Monday or should I call the peds cardiologist sooner? You can hear Jessica talking to me in the background and she wasn't extremely uncomfortable. She said that it felt like her heart got a min-trampoline and was jumping on it... or a pogo stick.

She was able to fall asleep so I'm thinking that it can wait until Monday. It's 4am here Sat morning so I think I'll call after I get some sleep and at least see who is on call.

Thanks for any input!

Musical Monday

I thought I would post a fun Musical Monday post to lighten things up around here a little. This song is very popular with my kids and it has gotten stuck in my head many times.... so yes, I'm going to share that agony with YOU! hehe! Here are two fun versions of the song:

NUMA NUMA




Misheard Numa Numa Lyrics
(be patient... there's more after the "words")

Miss Jess..... and worries about death

This is not the easiest of subjects. I know that many of you may not be up to reading this post and that's ok.... but I do want to warn you that there are some good things in here as well as the difficult stuff, so if you skip it, you might miss out.

I don't write about a lot of the conversations that Jess and I have or some of the stuff that we deal with ... but then I got to thinking that maybe I should. Jess talks to me but who do I talk to? I talk to Karl about it sometimes but he gets emotional... afterall, it's his little girl too. So I thought I would bring it here. I have had to learn to be calm when we talk about these things. I don't mean that I am cold... I am very compassionate but I don't fall apart. I have wiped away tears and let Jess see that sometimes, but on occasion I fall apart later, either when I'm by myself or with Karl.... but usually after it's been building up for awhile.

Miss Jess has been having some rough nights. She has been emotional and having anxiety. Weird thing is that she shouldn't be PMSing so I can't blame it on that. She has been fixated on death though. She has been causally talking about what happens to a body after it's been dead for awhile. We talk briefly about that and then I will quickly bring up our beliefs about what happens to our spirit once we die. I talk about how beautiful heaven must be and how we won't have any pain. We talk about who we know who has died and that we will be able to see them again. We discuss about some of the kids that she has known who have died from either CHD or other illnesses. We talk about how they must be running and jumping, swinging and dancing as much as they want - things they couldn't do when they were sick and sometimes never had a chance to do here on earth. Sometimes she will even talk about famous people we would want to meet.... Jessica mostly brings up people like Moses or Noah. On occasion she will learn about a former president of the US or a queen of England from a long time ago and she will brighten up and say, "Hey! I can meet them when I go to heaven!" LOL. She LOVES the thought of meeting royalty. After all, she is at the level of a 6 - 8 yr old and what little girl doesn't want to meet - or even BE - a princess?!

Well, tonight she seemed to be doing ok but got up a few times. With her anxiety she picks... she picks her skin on her arms, face and her toenails. (she has many scars on her arms and face from picking sores) Our biggest concern is infection. She has no idea how easily and infection could go to her heart and she could get bacterial endocarditis. So I caught her picking her toenail and making it bleed (she could cause and ingrown toenail!). I was not happy and I scolded her. (I have to treat her with kid gloves most of the time.) I had had it. The last 3 nights in a row she had kept me up until after 3:30 am and I have someplace I need to go tomorrow. I'm tired of having to take naps during the day because I don't get much sleep at night and the last few posts here have been regarding my health... obviously I don't feel well as it is. Well... my scolding set her into tears. Big 'ol alligator tears. I had been chatting online with my sister and had to go care for her. *sigh* (this is the sister who's son has cancer and I haven't had a chance to talk to her lately)

Jess was crying and saying how sorry she was that she had picked her toes and she hoped I would forgive her. I apologized for snapping at her and I asked her if she would forgive me. She nodded her head yes. I told her that of course I forgive her. Then she started crying again and asked if Heavenly Father would forgive her too? I said of course He will. She started talking about how she just wanted to give Heavenly Father and Jesus big hugs and how she wished that they could come so that she could hug them. She also wanted to tell them that she was sorry... so we decided that she should pray to ask for forgiveness. She started out by asking for forgiveness and telling Heavenly Father that she loved him. She then asked Him to forgive everyone, even if they didn't say they were sorry, but to please forgive them anyway. She is crying through her whole prayer and I was watching her... (I know, shame on me for not closing my eyes) I just looked at her profile, tears coming from her closed eyes, arms folded, purple lips and nose as she lay in bed pleading to her Father in Heaven to forgive her. I saw such an innocent, beautiful, angelic child who wanted to be perfect in every way. She went on to bless her cousin Marcus and our next-door neighbor, Donna, that they would be able to fight their cancers and to please not let them die too soon. "I will really miss them and I love them", she pleaded. She must have told Heavenly Father at least 5 or 6 times in her prayer that she loved him and Jesus too.

After her prayer was over I told her that Aunt Karen said that Marcus was doing pretty well. Jess said that she wished that Marcus's cancer was gone! I agreed with her. Then she said that she hated that Donna's cancer was back. "What if she dies?" I told her that we would miss her but we will always love her. The tears started back up and she said that Donna is the best neighbor friend that she has ever had! I agreed but told her that even once somebody dies, our love for them doesn't stop and we carry their memories with us always. We started talking about my grandpa H who's chair is in Jessica's room. She says that she likes sitting in it because she can feel his spirit holding her. My grandpa died before Jess was born but she has seen pictures of him and we talk about him and my grandma. So we started talking about great-grandpa and great-grandma... I told her some great stories about them and then we talked about my other grandma T (who is still alive) and her brother (who died just a couple of years ago). We have video of when Jess was about 3 yrs old and we got to visit with my grandma T and Uncle Melvin and Aunt Ada. I told her stories of how Uncle Melvin would tease my grandma T. He always called her "sis". Jessica started to laugh at some of the stories. I told her some stories of times I spent with my grandma and grandpa H. Then we talked a bit about an adventure we are going to have on Tuesday. We have to have some electrical work done at our house in order to continue the work on enclosing the carport so the power will be shut off most of the day on Tuesday. The boys will start school that day so I will take Jess out to grandma and grandpa Jensen's house for the day. I told her that I have wonderful memories of spending time with my grandparents and now it's her turn to make her memories with her grandparents. She smiled and liked that idea. She was FINALLY calm. She said that maybe she just needed to get all that out. I think I have to agree. I guess she has been so worried about herself dying, her cousin dying and even our next-door neighbor (who's chances of surviving 2 more years are only 30% - but Jess doesn't know that)... Jess just needed to get all that anxiety out.

In fact, a few days ago, she has asked me several times if someone can die from ulcers. She knows that she has ulcers and that's why she has to take the carafate. I told her that no, people don't die from ulcers. She then asked me if people can die from coughing up blood. Now Jessica hasn't coughed up blood for a couple of months but sometimes she can feel and taste blood in her throat, so I'm sure she is scared. I said that it would have to be a LOT of blood for someone to die. She asked, "like a cup?" NO, more than that. Like a bowl? No, more than that. I put my arms out really wide and said, "at least THIS much blood". "Like a RIVER?" I smiled. Yes, like a river. She knows she has never coughed up THAT much blood... not like a river, so she seemed to be ok with that. At least for a couple of days.

So here I am, typing at almost 3:00am about my daughter who is such a little girl in so many ways... who at her age should be dating, going to college and planning her future... but instead is playing with barbies, dreaming of princes and princesses, and worried about dying. I wish I could take that last part away from her. I wish I could take it away from all children who have life-threatening illnesses. I wish us parents didn't have to worry and watch our children worry.... and miss out on many of the "normal" things in life, not to mention the medical stuff they go through.

But on the other hand.... the faith my daughter has is amazing. She was truly sent to me to teach me and inspire me. I have never prayed harder than when she was hurting or near death. I have seen miracles. Another thing that Jessica brought up as she was having her anxiety, was that there are so many bad things out there. I told her that they would not come in here (meaning our home). I asked her who it was that made her live when she almost died when she was three? "Father". Who was it who gave you your eyesight back when you were blind? "Father." Who gave you back your strength and helped you learn to walk and everything again when you were paralyzed? "Father" Now don't you think that your Father in Heaven can bless you and protect you now? She nodded. "Of course He can. We just need to have faith and not worry about all that bad stuff." I reminded her that Mommy and Daddy do everything possible to protect our children. I reminded her that Heavenly Father blessed her with parents who love her more than life itself. He blessed her with brothers and grandparents and aunts and uncles and cousins who love her too. He also blessed her that people all around the world know about her and pray for her all the time.

We are truly blessed. Even at 3:20 am and are not sure if we will ever get to sleep tonight. Jess just got up AGAIN. She was looking for her CD player. *sigh*

Is there an anesthesiologist in the house?

Anybody?

Anybody?

Please?

Update on me

Thank you for your comments on my last post. I am doing slightly better tonight. One of the meds that the doctor gave me is making me extremely sleepy - it's an anti-histamine for allergies - I think I'm going to ditch it. I can't function being so extremely exhausted. I called the office and they got back with me tonight saying that I need to be seen in the office tomorrow by the nurse practitioner - if I can't get in to see him then I will have to go to the ER. Yeah... right. Wait until tomorrow to go to the ER. I don't think so. LOL I'm going to see if I can get in to the office to see the NP and if not then I'll try to schedule for next week. My doctor is out of the office until Aug 8th. I am going to ask for a referral to see a rheumatologist and see if we can get on top of this fibro thing.

I called the computer place and they were able to help me retrieve my email addresses. wOOt! I am able to find the saved emails but it won't let me import them to outlook express and of course I can't open them... so I'm not sure what to do about that. Anybody?

My good buddy, Dan, helped me figure a couple of other annoying things out on my computer so yay for him! He may be AWOL on his blog but was there for me in my darkest moment (hey, email trouble is life-threatening! ---- I was threatening my children's lives... lol)

Thanks again for your loving support. I just might make it through this summer... but considering where I live and that we have at least 2 - 3 more months of it, that is still yet to be determined. And for those of you who live in the humid areas... I concede.... a dry heat is much better than a humid heat! Even if it does feel like an oven at times! My body just doesn't like the humidity AT ALL.

Woe is me....

As if life in the South Western desert isn't hard enough during monsoon season where it is NOT a "dry heat" but a very muggy, thunderstormy and allergy-inducing type heat.... my computer thought it would give me troubles and died. For about a week now I've been patiently using my oldest son's computer to check email from time to time. I didn't have any of my favorite websites bookmarked, nor my email addresses saved.... but I was able to download AIM and chat with two people. We found out that our hard-drive died so we bought a larger one and took it to the "computer hospital". The people said that they were able to retrieve all the information from the hard drive. FOR JOY! But this evening when Karl brought our baby home and started her up.... most of the information that I was hoping to find is actually GONE. It seems as though anything that was saved in word doc form is lost. Other things are gone too... I have tons of shortcuts that were copied from the old hard drive but they don't go anywhere. I have done searches to find specific files or documents and they come up with just empty shortcuts. I will call the company tomorrow and find out what is going on but so much stuff is just.... GONE.

saved emails: GONE
email addresses: GONE
favorite websites: GONE
saved files for CM business: GONE
saved passwords: GONE

Photos: as far as I can tell... SAVED!!!!!!!!!! Of course these would be the only things that I had recently backed up. haha!

Moral of the story: If you want it... back it up.
If you back it up then when your computer crashes, they will be able to save it from your old puter. If you didn't back it up then of course those will be the files that will be forever lost.

Back to the weather... we have had more rain here than usual.... in fact, we have moss growing in our yard. MOSS!!! Very weird here in the desert! The ground is so saturated that when it rains the water just runs. We have flash flood watches daily

I don't mind the rain... but apparently my body does. My allergies have really been giving me problems and then to top it off, my fibromyalgia is really flaring up. I hurt so bad, am so swollen and am exhausted. I went to my doctor last week and he put me on prednisone for the allergies (extreme itching and rashes). I was to take the steroids for 5 days so I did. I had the typical side effects: feeling jittery, not able to sleep, excessive sweating (but with this weather, who can tell?!) irritability... Today is the 2nd day after stopping the meds and I'm already starting to itch again. I'm so exhausted from not sleeping well during the predsnisone days that I'm overly tired and to top it off.... every muscle in my body hurts. I've never felt like this before... it's as though every muscle is inflamed and in pain. For instance, my arms are achy but when I leaned against a wall, pain shot through the area that touched the wall. I need to call my doc tomorrow. I wonder if this could be a side effect from the prednisone or if the fibromyalgia is really getting bad right now? Every muscle is tender to the touch and feels inflamed.... (puffy?) even in my neck... hands, arms, body, hips, legs, face.... EVERY SINGLE one.

Please pray that I can get to feeling better. My kids need me to be able to care for them and school is starting up again in just 2 weeks. I can live without all my computer stuff even though it may make paying bills a bit harder, (and I'm so relieved that my photos are saved)... I am more worried about my health and being able to care for my family.

Musical Monday - tribute to my retreat scrapbooking buddies

Here's the story: Last year at our yearly Creative Memories scrapbooking retreat, the girls and I got silly and started singing the "ma-na-ma-na" song one night. It has been our "theme song" ever since. Kerri, Reesa and Mona came to Jessica's birthday party and while they were here, they conspired to get the t-shirts and went in together and got me one too. I had no idea they were going to do it so when they gave it to me at this year's CM retreat, I was so surprised! I have to say that it was quite fun! Too bad our whole group didn't get a chance to get in on it. (Jessica's birthday was right before the retreat).

Here is our group on "pajama night".
Mona, Joy, Kerri, Reesa, Darci, Me, Valerie and Denise.



The Ma-na-ma-na girls playing it cool

We had such a great time at this year's retreat! Denise did such a great job taking care of me and my customers... maybe I can get her to do it again next year so I can just enjoy!

Tiny

This week's theme is TINY.
ooops, that should be tiny.


Jessica caught a tiny snowflake.



Brandon made a tiny snowman



A tiny pirate



This is Grandpa Taylor when he was tiny.



And finally:
We are a tiny bit crazy...
Jessica and I doing our Cousin Itt impressions.

A Surprise Visit

My sister, Alice, called me at about 12:30 pm to tell me that our Aunt Marie was coming into town today between 2:00 pm and 3:00 pm.... and she was coming to my house. My first thought was... "oh no! My house is so messy! *gah*!" Having been up with Jessica until 4:30am and not getting to bed until 5:00 am, I was not even up and going for the day when Alice called. I had less than 2 hours to get myself and Jessica fed, dressed, and ready for company... and clean up the house as best as I could. Karl had taken Brandon and Austin to church and Justen had already left to go to his ward. I had several loads of clean laundry in the living room - most which I had folded the day before, a bag of books that the boys had gone through and wanted to donate which I needed to look through, bag of shoes that needed to be returned, sofa and love seat pillows and cushions awry, two pairs of shoes that Brandon had left out in the family room, gamecube and games as well as videos had been left out. I'm proud to say that I was able to take care of all those items! wOOt! Fortunately I had done dishes the night before. Just yesterday I had set up my sewing machine to mend a stack of clothes and had almost finished with them but the sewing machine had to stay where it was as well as the stack of junk on the table. I also just left my scrapbooking tables and stuff left out. There was no way to put it all away in such a short time and I also want it out so I can continue to work on my albums.

When my Aunt called me from her cell phone telling me that she and Uncle Willard were in town and to double check the directions to my house, she also told me that a few other people were coming to meet at my house too. You see, my aunt wrote a book and she had just gotten it published and was bringing our copies to us (my sister and I). There were other families in my area who purchased the books too. At that point I was really glad I had done the cleaning I had but really wished that I had more time to make it more presentable.... or I could have even fixed snacks for everyone. Ah, well.... that's the way it goes!

We had a nice visit. Silly me, I didn't think about taking pictures until everyone had left. Figures! One person that came was a cousin of my dad's, Lorin Jarvis. He said that he hadn't seen me since I was very small. He grew up with my dad in the Mormon Colonies in Mexico and he had several fun stories to tell us. Then some friends of mine, Claudia and Dave came. Claudia and I grew up together in Colonia Dublan and went to high school at the Academia Juarez together. (I bet most of my readers didn't know that I was born and raised in MEXICO!) It was so good to meet a cousin of my dad's and to see Claudia, Dave, Aunt Marie and Uncle Willard again! Of course Alice and her 3 kids came over and it's always nice to see them too - but we see them more often since they live just about 5-6 miles away.

My aunt's book is about her life and our ancestors who lived in the Mormon Colonies in Mexico. There are a lot of great pictures of my great-grandparents, grandparents, my aunt's children, grandchildren and her first great-grand child. I haven't had much of a chance to look through the book yet but I am glad to have it and will share it with my children. My aunt (like myself and many others) moved out here to the US, got married and are raising our families here. My aunt includes that in her book and named it: "The Tale of Two Countries". My parents still live in Mexico and come to visit us frequently. Since Jessica is too ill to travel, it's been about 10 years since I've been "home". I'm sure it has changed a lot and some people have left the area, but I can't help but get homesick sometimes. It's a beautiful area and the people are warm and friendly. I would like to see some of the wonderful people again but I'll just have to wait. My mom keeps me updated on how everyone is doing.

Today a true angel earned her wings

Today a true angel earned her wings and is in heaven. This sweet angel's name is Danielle.




Seven years ago I came online and found support for families with children and adults with Congenital Heart Defects (CHD). I have met so many wonderful friends through these support groups and have even met some of them in person. One CHD family who lives in Ohio, came to AZ for family reasons. While visiting the area they came to my house and we got to meet them face to face. I had chatted with Mary (Danielle's mom) many times online, via email and through support groups. I had also previously called and spoken to Mary. Danielle said, "I love you!" to me on the phone and I was so thrilled! Danielle has suffered several strokes, accidental morphine over-dose (that was not the family's fault), heart defects, stomach/GI problems and most recently, brain bleeds. Danielle has defied the odds for so long..... she has truly been an inspiration! We will miss you, Danielle, but you are finally able to dance and do all the things your earthly body wouldn't allow you to do.

Please pray for Danielle's parents, brothers and extended family.

Below is a picture of my daughter, Jessica, with Mary and Danielle.

Shadows

This week's theme is shadows. Here are two photos using shadows to create two very different effects. I like them both but as you can clearly see, they are completely different.

This first picture is of my friend Keri's son. This little guy is usually into everything but I was able to get him to hold still for this photo. The highlights on the right side accentuate the shadows on the left.



In this picture I used shadows to accentuate the Christmas lights. In my opinion the shadows in this picture are a little over powering and you don't see the other decorations, but I am an amateur photographer and am experimenting with my camera. By the way, my cat, Charlie, is in the picture. Can you find him?


UPDATE: I lightened the shadows on the picture above - it has a different effect doesn't it? Now you can not only see more of the Christmas decorations but you can see Charlie, the cat better. The lights on the tree aren't nearly as impressive this way though. Congrats to those of you who found Charlie before I lightened the photo.

So little time, So much to write - of So little importance (rant involved - be warned)

OK, where to begin. Let's start off on the topic of juvenile delinquents. Is it the parent's fault? Lets look at the following events:

A couple of days ago Karl and I went to our local stop 'n rob convenient store. We got there just in time to miss seeing a bike get stolen. We were there but we weren't paying attention. I had picked up the mail as we were leaving our house and we were sitting on our car in front of the store when one of the clerks (we'll call him.... Greg - 'cuz that's his name) came and knocked on our window. He says, "Karl! Did you see that kid steal the other kid's bike?" NO. It happened right in front of us. *doh!* Anyway, it was decided that I would stay at the store and get the things we came for, Karl got a description of the kid and the bike and Karl drove the car to go find the stolen bike. We could see the boy crying who's bike had just gotten stolen. Karl didn't find the kid on the bike but he thought he did and almost jumped on the wrong guy. Shortly after Karl got back, the kids RETURNS TO THE STORE in an SUV and the clerk recognizes him. Apparently the kid didn't tell the people he was with that he had just stolen a bike and they just happened to stop by the store on their way out somewhere else. The police pulled into the parking lot just as the clerk is telling us that the kid who stole the bike (we'll call him Freddy - yup, that's his name - there's no protecting the criminals here!) is definitely in the SUV. Karl was about to go and talk to the people in the SUV when I motioned to him that the police were there. He went and told the cop where the suspect was. Apparently the cop knows Freddy all too well. He told us (after arresting Freddy) that he has arrested good 'ol Freddy many a time... as well as his mom. So Freddy confesses, the cop takes him (in the back of the patrol car) to go get the bike. By that time another officer is talking with us in the parking lot. (us being Karl, me, the victim, the victim's sister and now the victim's mom). The people that Freddy is with are his in-laws and of all things, they are copping attitudes TOWARDS US! - the victims and the people who are helping the victims. Puhleeze! We aren't going to be intimidated by a bunch of criminals ermm.... the people who originally denied that Freddy was in the SUV. Freddy is only about 12 or 13 years old... tops! I'm afraid he probably has a life-time of being a criminal. I feel bad for the dude - his mother is a crack-head and his in-laws (could be an older sibling's family?) are either criminals or at least don't care if he is doing anything wrong. But I felt really bad for the boy who's bike was stolen right in front of him. His mother said that his first bike was stolen right out of their garage and the garage door was closed! This new bike has been kept inside the house. This kid had only left his bike right outside the store doors for a moment when Freddy the Fredster took off on it. The owner took off after him and almost caught him! Greg kept telling us how fast that kid is. The clerks have given him permission to bring his bike inside the store from now on.

Another juvenile delinquent story:
This evening Karl and I went to KFC for dinner. As we were leaving we see 3 teenagers getting out of a car. They are wearing the "goth" garb, which is fine. They all have thick eyeliner - one which looks like tears. Fine. Their hair look funky. No problem. Piercings everywhere. Not a problem... it's their bodies, what do I care? But their language! "F" this, "F" that... more than every other word is "F" and they are talking very loud. I close my car door and notice that the back of on kid's shirt says, "I am the god of "F". HUH? I wonder where the mom is?! Oh wait... she is in the car, smoking her cigarette while waiting for the kids to get her some chicken. Ahh... well, if they are getting her some chicken then I guess it's ok for them to talk like that and wear a shirt with the "F" word spelled out in big bold letters. I was repulsed. As I said, I don't care if the kids wear the goth stuff, the chains, piercings, make up and wild hair. It's their business. But what I do care about is them polluting the air with their obscenities: both vocal and visual. I am trying to raise my children to love the Lord... not be the "god of "F". I was highly offended that someone would even use the word "God" and "F" in the same sentence much less print it on a t-shirt. Karl told me that there used to be laws against wearing stuff with vulgarities like that but not anymore. "Freedom of Speech". Well, I'm sure that's exactly what our founding fathers had in mind when they wrote about freedom of speech. I can tell you one thing. If any of my kids were to bring home a t-shirt that said that, it would go directly into the fireplace. We'd have a huge fire even if it were 110° outside. If a friend of one of my kids wanted to enter my house (or my car) wearing something like that I would say no way. Go home and change your shirt... and by the way, change your attitude while you are at it. I would definitely not be taking the little ... kid.... to KFC and listen to him (or her, I couldn't tell which it was) talk like that either. There have been a few times that a friend has been visiting and I've heard an undesired word come out of his mouth. I have told said friend that he isn't allowed to talk that way at our house. If he says it again, he has to go home. One kid didn't think he had to obey MY rules at MY house and he was sent home and wasn't allowed to come back until he changed his attitude. He came back with a much better attitude and if I ever told him not to do something again, he obeyed right away. Recently Karl and I saw that same kid at a local store and he came up to us and was very happy to see us again. (we moved away from that neighborhood 9 years ago) He asked how everyone was doing and he still had the utmost respect for us. I was very happy to see that he seems to be a nice young man.

And the last item on the agenda would fall under the heading: "You might be a redneck if". At least this one is not anywhere near the stupid stuff I wrote about above. This one is family related. Fortunately most of my family doesn't read my garble so I think I'm safe in writing this... after all, it is my youngest brother that says our family puts the FUNK in "Dysfunktional". lol Anyway, my niece got married last month, June 21, in CA on the beach. We weren't able to attend the funeral wedding but my middle brother sent us some lovely pictures. Beautiful young bride and handsome groom. White sand, blue sky and ocean waves in the background. Cute ring bearer (niece's youngest brother), beautiful flower girls (sister's girls), nice wedding all around. My brother, the bride's father, sent me an email inviting us to the wedding. I wished we could have made it but Jessica is unable to travel and I just can't leave town with her not doing well. I sent an email to my brother telling him how much we wished we could make it and hoped he would understand why we couldn't. I didn't get a reply but I usually don't.... just one of those "man things" I guess. So today I get an announcement for my niece's wedding in the mail. Yes, the one who got married 3 weeks ago. I figured the announcement must have gotten delayed in the mail. Oh wait... there's a picture included. It's a picture OF THE WEDDING. Did I mention that on the announcement it says: couple is registered at Walmart. Is this a hint? hahahaha!!! Is it just me or is that a redneck thing to do? Karl and I had a good laugh over it. He said we should send them a picture of our wedding from 1985 and say that we are registered at Walmart too. ROFL... I bet my brother and SIL figured that since we weren't able to attend the wedding that we might like a picture of it and the announcement for a scrapbook but it was really funny the way it came across.

Hey, at least we got a laugh out of the whole thing.

[disclaimer: if you don't agree with anything I wrote then too bad. It's my blog and I'll write what I want to. haha! I have the power to delete unwanted remarks... mwuahahahaha!]

Musical Monday

THE HEAT IS ON!

We've been getting up to 109 or so the last couple of weeks. The monsoons are starting so that means one of two things. It is muggy and hot or the heat can actually trigger thunderstorms which sometimes lead to some rain and cool us off but many times it leads to high winds, dry lightening and scary thunder and walls of dust being blown around the desert. yeah.... good times!



I tried to find a better video of this song on YouTube but couldn't find one. Ah, well, here are the lyrics:

The Heat Is On (Glen Frey)

The heat is on, on the street
Inside your head, on every beat
And the beat's so loud, deep inside
The pressure's high, just to stay alive
'Cause the heat is on

Oh-wo-ho, oh-wo-ho
Caught up in the action I've been
looking out for you
Oh-wo-ho, oh-wo-ho
(Tell me can you feel it)
(Tell me can you feel it)
(Tell me can you feel it)
The heat is on, the heat is on,
the heat is on
the heat is on
Oh it's on the street, the heat is - on.

Oh-wo-ho, oh-wo-ho
Caught up in the action I've been
looking out for you
Oh-wo-ho, oh-wo-ho
(Tell me can you feel it)
(Tell me can you feel it)
(Tell me can you feel it)
The heat is on, the heat is on,
the heat is on
Oh it's on the street, the heat is - on.

The shadows are on the darker side
Behind those doors, it's a wilder ride
You can make a break, you can win or lose
That's a chance you take, when the heat's on you
When the heat is on

Oh-wo-ho, oh-wo-ho
Caught up in the action
I've been looking out for you
Oh-wo-ho, oh-wo-ho
(Tell me can you feel it)
(Tell me can you feel it)
(Tell me can you feel it)
The heat is on, the heat is on,
the heat is on

It's on the street
The heat is on, the heat is on,
the heat is on
Yeah it's on the street
The heat is on

Our 4th of July Celebration

We went to Karl's parents house for dinner. Karl's nephew, Jeremy, and his friend, Michael, just moved here to go to the university. After dinner the kids (Karl included) got to have some fun in the swimming pool. Jeremy is the one dancing his heart out in this picture. My oldest son, Justen, is in the water to his left and Michael is to his right.




Karl is helping Austin learn to swim. Austin's form is improving. Too bad his dad can't see it from the water splashing in his eyes. lol




Jessica is not able to get clear into the water. She gets extremely "blue" when she does. It's not fun at all because she can't breathe and gets sick... so she has to be content sitting by the side with her feet in the water. Even then she got "blue" pretty quickly. When it was time for her to get out, her grandpa brought some chairs for us to sit on and we all (grandparents included) sat by the pool and enjoyed the boys having their fun.



Brandon getting ready to jump into the pool.




He made a pretty good splash!


We went to watch the fireworks. Jess and I hanging out waiting for them to start.



We weren't able to get very close to the fireworks but we were able to see them ok. My oldest son, Justen, helped me figure out how to set my camera so the shutter would stay open longer. I experimented with the settings and moving the camera around and I got some pretty interesting shots! I had to zoom in to get these shots (or cropped them) but I am pretty happy with how they turned out. I hope you enjoy them!

FAKE

This week's theme is FAKE. Jessica got Davey Jone's treasure chest for her birthday.
Is it the real thing or a FAKE?




It looks like it could be the real thing... I see the heart and Jessica is showing some of the "treasure". (She loves to make bracelets and necklaces)



Now it looks like it could be a fake... I didn't think that Davey Jone's heart glowed!



It may be a FAKE Davey Jones treasure chest with a FAKE heart but it is a REAL CD player!


Thank you Kerri and Summer! Jessica loves her new CD player!