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)

Mini Update and Christmas Eve

I've been meaning to update you all but I've been busy with taking Miss Jess to school, picking out new glasses, taking her to her peds cardiology appointment, taking Brandon to the orthodontist, other mandatory "Mom" things as well as last-minute Christmas shopping. I guess that last run-on sentence was an up date in itself. hehe... Here is an update on my previous post:

Come to find out, Karl had in fact fixed the oil leak but since he had added so much oil, the excess was running off and that's why it seemed to be leaking like a sieve! There hasn't been any more leakage that we can tell and Justen checks the oil every day... the level is still way above the full line so we are happy about that! I hope it's ok for it to have too much oil!

The package I mailed to my friends arrived safe and sound and both families were able to receive it in time for Christmas. What a relief that was to me! I probably shouldn't get so stressed out about things like that but I am just so concerned about one family - which happens to be Paige's family. I have posted prayer requests about her here before and unfortunately she still doesn't seem to be doing any better. She doesn't qualify for a heart transplant due to some other medical issues so those need to get cleared up so she can receive a new heart. Her strokes have left her still unable to talk or really move much and it's unclear how much she is able to understand. She is breathing on her own and makes slight progress but this is very hard on the rest of her family. So please continue to keep Paige and her family in your prayers.... she has been in the PICU since September and her brother is staying with grandparents - 4 hours away from where his mother stays with Paige in the hospital. Paige's dad has to work to support the family and keep their insurance so he leaves during the week and tries to go visit his wife and daughter on the weekends.

I took Jessica to school for about an hour on Weds. Her class had their Christmas party then and she really wanted to go. We are talking about having her graduate this spring. Since she isn't able to hand large crowds or long ceremonies, we are going to have a private graduation ceremony for Jessica and include her classmates, teachers and family. She will be allowed to go back to school to visit whenever she wants but that's about all she is doing now - just visiting on occasion. One of the teacher's assistants suggested that we do this before she (the TA) retires at the end of the year. I got to thinking that we should do it while Jess is still able to participate in something like that.

I'm about to fall asleep here and I think I hear Santa's reindeer on the neighbor's roof, but one last thing: We had a lot of family come to dinner at our house tonight. We had ham dinner, singing, guitar playing, violin and piano solos vocal solos and duets, clarinet solo and the reading of a unique version of a Christmas classic: "Twas the Night Before Christmas - Spanglish style." Since all of my family (myself, my sister's husband and my brother's wife) grew up in the Northern part of Mexico - and we live practically on the border to Mexico, this poem seemed appropriate. My brother who now lives in CA read it to us. I thought it was quite cute and many of you will "get" it too.

'Twas the night before Christmas and all through the casa,
Not a creature was stirring - ¡Caramba! ¿Qué pasa?

Los niños were tucked away in their camas,
Some in long underwear, some in pijamas,
While hanging the stockings with mucho cuidado,
In hopes that old Santa would feel obligado,
To bring all children, both buenos and malos,
A nice batch of dulces and other regalos.

Outside in the yard there arose un gran grito,
and I jumped to my feet like a frightened cabrito.
I ran to the window and looked out afuera,
And who in the world do you think that it era?

Saint Nick in a sleigh and a big red sombrero,
Came dashing along like a loco bombero.
And pulling his sleigh instead of venados,
Were eight little burros approaching volando.

I watched as they came and this quaint little hombre,
Was shouting and whistling and calling by nombre:
"Ay Pancho, ay Pepe, ay Cuco, ay Beto,
ay Chato, ay Chopo, Maruco, y Nieto!"

Then standing erect with his hands on his pecho,
He flew to the top of our very own techo,
With his round little belly like a bowl of jalea,
He struggled to squeeze down our old chiminea.

Then huffing and puffing at last in our sala,
With soot smeared all over his red suit de gala,
He filled all the stockings with lively regalos,
None for the ninos that had been very malos.

Then chuckling aloud, seeming very contento,
He turned like a flash and was gone como el viento,
And I heard him exclaim, y ¡esto es verdad!

Merry Christmas to all, ¡y Feliz Navidad!

Stressing out....

Dan insists that I need to update more so I guess I'll humor him a little. Let's see... where to start first?

Oh yeah, how about starting with the pick-up truck. It's a 91 Toyota and has been leaking oil for awhile. Recently it suddenly started hemorrhaging oil! We would give it transfusions every day and still would be dry by morning. Time for surgery. Karl is a JVS (junior vehicle surgeon) and figured out what part needed to be replaced. After calling most parts places and not being able to find the particular part he needed, he decided to go for a 2nd opinion and get an estimate. The estimate was about $400! Did I mention that the part only costs $11! So the SVS (Senior Vehicle Surgeon) talked to Karl about what steps he needed to take to replace the part - AND gave him the name of a store which sells the part so Karl could work on it himself. This surgery is not an easy one since everything has to be taken out of the truck and out of the way just to get to the part. The patient had to stay up on blocks in ICU over-night since most of it's innards were strewn all over our front yard. Karl has Hazardous Materials classes every day this week and can't take a day off to fix the truck so he has been working on it in the evenings. Justen is the main one who uses the truck and he has been helping his dad do the work. Well, this evening all the parts were put back together and the truck started right up. Karl took it for a test-drive and guess what? THE BLASTED THING IS LEAKING LIKE A SIEVE! For crying out loud! Karl looked and looked at it with his flashlight and it seems to be leaking in a different area then the one place he worked on. He will have to take apart the truck to get to that place too. UGH! Very frustrating. Justen has to miss doing his mission tomorrow since we don't want him driving the truck very far. He can only take the truck to work. Fortunately he works less then 2 miles from here, where his mission is more like 8 or 9 miles away.

Karl is still working on enclosing the carport. It's amazing how much work has to be done on this thing! We had the "intermediate electrical" inspection today but didn't pass. There are a couple of things that Karl need to change. These aren't huge things but it will take more time and work... and of course, more money. Even though we aren't as cold here as many of you gals and guys, it has been cold - down to as low as 29° - and since there is no insulation in the walls of the new room yet, cold air has been coming into the house. Karl put up some make-shift doors to help keep the draft out of our house but it is still seeping in. Jessica has been getting too cold so we turn up the thermostat to keep her warm and then of course our bills go up. We can't put the insulation up until we pass the electrical inspection. We were hoping to have passed the inspection today and been able to quickly put in the insulation the rest of this week but the inspector - and our pick-up truck - had different plans for us.

I am a bit stressed out about a package I sent to someone for Christmas. The package I sent was for two families to help them out with Christmas. If it's any body's fault what happened, it was mine, but mostly it was all a misunderstanding. I spent $40 to sent the package over-night to family #1 and nobody was there to accept the package. According to the tracking record, they left a message for the family to go to the post office to pick it up (last Saturday) and it still hasn't been picked up. The online record said that if it isn't picked up within 5 days (from Sat) then it would be sent back to me. Family #2 has a child in the hospital far away from their hometown and a family member was to pick up items for the child on Monday at the address of the first family, so I sent it over-night so that both families would have it in time for Christmas. I haven't heard anything from family #1 and I realized, after reading through some email, that they may not have been in town over the weekend - in fact, I'm not sure exactly when they were returning. If I had known, again - I should have read email and figured things out, I wouldn't have mailed it over-night and would have saved a few bucks... especially since family #2 has probably already missed out on picking up their gifts before Christmas. Note to self: when wanting to mail packages, don't ASSUME ANYTHING. Be sure to prepare package early and know for a fact that it will be able to be picked up on time! LOL! I could have saved myself a lot of grief by preparing the items earlier and mailing the package sooner. As I said, I am not upset with either family, just mostly with myself for not being on the ball. I am concerned that I haven't heard from family #1 so I emailed them tonight to see if they even knew they had a package waiting to be picked up. I will be very upset if the package gets sent back to me because I really want these families to have the gifts. My kids contributed to the package and I know they genuinely care about those families too. There have been times when USPS has left those messages without enough information or in places where someone wouldn't find them. Hopefully family #1 will get my email and can go and retrieve the package.

Jessica has not felt up to going to school AT ALL this year yet. One of her best teacher's assistants called me and asked if Jess wanted to go to their class Christmas party. Of course Jess asked to talk to the TA and wants to go. The party is tomorrow, on Weds - I say tomorrow because it's not quite 2:30am and I just got her into bed again. School lets out early tomorrow at 11:00am so the party starts at 10:00am. Usually Jess doesn't get up in the morning until 11:00am so it's going to be interesting trying to get her up at 8:45 in order to get her ready to go. I felt really bad for her because she was getting some things ready to put into her backpack to take to school tomorrow and then she was huffing and puffing... she started to cry saying that she didn't feel well. She gets out of breath so easily and tires so quickly. I was able to get her calmed down after a little while and I just hope she feels well enough to go. My heart breaks for her. She has such big hopes and dreams and her body just can't handle hardly anything anymore. I hope she can handle going to see her friends and teachers tomorrow for a little while. It's something she really wants to do. The special Ed teachers have been talking about Jessica and asked me if I want her to graduate this year. She doesn't go to school but a few times a year and they said that she is always welcome to go back to visit. She isn't even doing school work because she fatigues so easily. She is able to do very basic addition and subtraction, she can read at a 2nd - 3rd grade level which is pretty good for special ed. I talked to them about possibly having a small ceremony since I don't think she could handle a large ceremony. When Justen graduated a few years ago they held it out on the center of the football field. Even though the graduation ceremony was held in the evening, the sun hadn't gone down yet and it was HOT! We had a hard time finding a place in the shade for Jess to sit and she was exhausted before it was over. This was before she started having lung bleeds, arrhythmias and had been going to school on a more regular basis. I just can't see her trying to be out on the football field in the sun for the whole ceremony. I was told that they are already looking into having a private ceremony for her and having her teachers and classmates participate. I think it would be a really nice experience for Jessica to be able to wear a cap and gown, have her pictures taken and have a small ceremony just for her. Although, talking about these arrangements makes me realize again how fragile she is and how much she has declined in the last year or so. Technically, she could stay in special ed for another year or even two but if we want her to be able to graduate, we need to do it now (meaning in the spring) before it's too late.

On a good note:
Santa is going to come to visit Miss Jess at our house either Friday or Saturday evening for a little while which is always really nice for her. She really loves those visits since we try to keep her away from the crowded mall and other places where germy kids like to gather. I don't think she needs to be in a long line of children waiting to have a quick visit with Santa. This Santa has come to our house for the past 3 or 4 years and he looks forward to seeing Jessica every year. Of course the boys are always involved too but they don't think they need to believe in Santa anymore.... but Jessica sure does! I love her innocence and her joy in talking to Santa and taking pleasure in the simple things in life.

Speaking of Christmas and packages, etc... I've been running myself ragged trying to get everything ready for Christmas. Every year I always end up wishing I had ONE MORE WEEK to get ready! We are doing minimal decorations this year since things have been so crazy. Jessica has had several doctor's appointments lately and has another cardiology appointment on Thursday. Brandon has an orthodontist appointment tomorrow afternoon too. I usually do most of the Christmas shopping with my friend, Keri and then Karl will help me do the rest but since he's been so busy this year, I've had to run out and do it all. Also, Keri up and moved out of state so I've really missed her this year! (Geesh, Keri, can't Bert just commute? haha!) Karl and I usually wrap gifts together but the way things have been going, I have been doing the wrapping by myself too. I kind of feel bad that Karl hasn't been able to participate in these preparations for Christmas since he usually likes to help pick out fun things for the kids, etc. It's just been such a crazy year! He has really been going to a lot of specialty classes and doing special details with his job... then spending as much time as he can working on the room. I try not to complain about not spending as much time with him nor the huge messes that keep being made with the construction, but it's wearing on me. Hopefully once the insulation is in Karl will be able to relax a little more and not feel so pressured to get it finished. I know, the biggest mess is yet to come. That dry-wall is HORRIBLE, especially when they will have to sand it. Oh boy, I am NOT looking forward to that! But you know.... it will all be worth it. Not only because I will have a nice room of my very own, but because I know that my sweet husband is doing all of this for me. He loves me and I tell him every day how much I appreciate all his work. This evening he came into the house to wash his hands a little before taking the truck out for a test drive. He has smudges and specks of oil on his face and in his hair that I wiped off with a rag. Karl told me that it's little things like this that let him know that I love him. hehe... and I do. He's a cutie - just like a little boy who gets all dirty while playing outside in the dirt (and oil).

Well, that is my whinny update. I feel better just getting all that out. Most of the time I have been very happy that all my kids are home, safe, and mostly happy. Hey, I have teens so of course they aren't going to be ALL happy ALL the time! hehe! I am really looking forward to spending time with family that is coming into town for Christmas and with those that live here too. If all goes as planned, my family will be coming to my house for dinner on Christmas Eve. I think I convince Karl that ham would be nicer (and easier) than a turkey for dinner. On Christmas Day, we are going to drive out to Karl's parent's house for a nice, quiet lasagna dinner which my Mother-in-law is cooking. It will be nice to relax and enjoy a quiet evening with them too.

What is stressing YOU out? (Besides reading this long-winded post?)

12 Days of Christmas?

I have been decorating for Christmas (FINALLY!) and listening to Christmas music. Here are a couple of fun YouTube versions of "12 Days of Christmas". Neither is your typical version so I highly recommend that you watch them and have a little giggle.





Hope you all are getting your Christmas shopping done and are more on the ball than I am.

What is your definition of beauty?

Beauty, they say, is in the eye of the beholder. Is that true? Then why does society try to fit the term "beautiful women" into a small cubbyhole - one that only allows tall, thin, young women with full lips, high cheek bones, large eyes and flowing long hair into it? Here is a video clip that has been on many blogs and sent around via email but it deserves to be posted again.



Here is another one that my friend Dan posted on his blog recently:



I grew up thinking I was too fat, too short, too this, too that, but definitely not beautiful. I would wish I could be more like so-and-so or the latest model or actress. My dad has always said that people put far too much emphasis on beauty because beauty is fleeting - it doesn't last forever. I had people in my life who would tell me that I was beautiful just the way I was, (thanks Mom!), but somehow that just wasn't quite enough. Everywhere I looked, in the magazines, on TV, movies, etc, there were the "beautiful" women that I could never look like. I still have very few pictures of myself that I like. I am far more critical of myself then those who love me... my husband tells me every day that I'm beautiful and he says I insult him by rolling my eyes or making silly faces back to him. I've been trying to not do that as often and realize that he really does look at me and sees me as beautiful. I am trying to view myself as he sees me.

Jessica sees people with her heart - she saw a picture of my great-grandmother and said, "WOW! She's beautiful!" I have to tell you that I have looked at that same picture many times and wondered how such a wonderful woman could be so homely? I've heard many stories of my great-grandmother and she did so much good for so many people, she was a mid-wife and delivered hundreds of babies, she did a lot of service for people in her community and church and she was so talented.... she did amazing handwork, some of which my aunt has samples of. She blessed every life she touched and I look forward to meeting her when I pass on... but I never thought of her as "beautiful". My mom sent me a picture of her and Jessica asked, "Who is that lady? She's beautiful!" She didn't even know who it was and yet she knew she was beautiful.

I want to be more like Jessica when I grow up.

The Lazy Blogger

I am a lazy blogger and copied most of this post from an email I sent to my friend, June, who emailed to check up on me. How sweet to have a blogger friend that was worried about me since I hadn't updated in awhile. So here is my update with only minor changes from the email I sent her.

Things have been crazy-busy around here. Jess has been up and down - she's had some pain in her right foot and she's been fighting congestive heart failure. We've been to the doctor's a couple of times and done x-rays on the foot and blood work. Apparently the x-ray was normal so she must have hurt it somehow but fortunately didn't break anything. Her foot seems to slowly be feeling a bit better. Her blood work came back that her thyroid was still low so her doctor increased that medication. I spoke to the cardiologist and I'm allowed to give her 1 or 2 extra doses of lasix per week but not more. She already takes it twice a day and if she needs more then we will have to give her more aldactone too in order to keep her potassium in check. Her legs and feet are less puffy and her primary care doc said that she looked pretty good. All blood work was good so she isn't in CHF too badly.

We had a marvelous Thanksgiving and I keep meaning to upload pictures and post them here. We had family come into town and I got to see my nephew who is battling brain cancer. He is an awesome young man and he and his brothers are growing up so fast! It was great to see my sister and her husband again too. My parents came in from out of town and my mom's sister, husband and son also came from the Phoenix area. We got to see friends of the family and my siblings that live near us and their families too. It was a crazy-noisy-wonderful time!

The best news is that my oldest son (who has aspergers) took a date to a formal dinner/dance at the church tonight. He brought his date over to meet us and I took a few pictures. I am so happy that my son felt comfortable enough to ask a girl out on a date. This is only his 2nd date EVER! He is 21 yrs old but his aspergers has made it very difficult for him to reach beyond himself and be sociable. He has come a long way since he was diagnosed almost 2 years ago and I am very proud of him. Karl and I have been coaching him on how to be a gentleman and he did so well! I am very impressed with the girl he brought to meet us. She is 18 yrs old and was so nice - especially to Jessica. She and Jess really hit it off. After Justen and Raven (his date) left for the dance Jessica talked non-stop about Raven and how nice she is and how they have so much in common. She asked me if Raven would be able to come over and play Nintendo with her and Justen, etc. hehe After the dance, Justen told me that it went really well and they had a good time. He plans on asking her out again and possibly bringing her over to hang out. Apparently she said that meeting us wasn't "as bad as she thought it would be". haha! I'll take that as a compliment! Karl and I wanted her to feel welcome and I hope we achieved that. We are both so happy that our son is progressing and making good choices.

I'll upload pictures soon - I promise! I haven't been getting much sleep and was ill most of the day today so I slept - now I've been up for awhile and am heading to bed. We are supposed to put up our Christmas tree tomorrow so I'm going back to bed so I can feel well enough for that fun family activity. Of course I'll be taking pictures of that! ;-)

I am so blessed to have such a wonderful family and awesome friends. I just couldn't ask for more.

Be The Blog

Bridget from Miles to Go Before We Sleep
gave me the following award:

Mark from Me And My Drum, who created this badge has this to say, "This badge is for bloggers who make their blogs their own, stay with it, interact with their readers, and have fun!"

I was shocked to receive this award, especially since I've practically been MIA in the blogger world lately. Thank you, Bridget, for this lovely award. I will display it proudly!

I now give the award to: (in no specific order)

Julia at: My Adventures and Antics

Emily Elizabeth at: Lovely and Amazing and Gabriel's Heart

June at: The Burnett Clan in CO

Jennyhaha at: Jennyhaha's Flawed and Disorderly

Melissa at: Adventures of an Awesome (sometimes) Mother

Chelle at: Crazy Thoughts

Jenny at: On Grace, God, being a spouse, mother, daughter, sibling, teacher, barista, and being myself throughout life
(who should also get an award for the longest blog name!)

Go and visit their blogs and see why I think they deserve the award. These women have not only influenced my life in a positive way but have also become my friends. I don't get to always read every single post of theirs but it's due to lack of time. Every word is worth reading and their photos are great too!

I Love..... Karl

This week's theme is I Love ____ and out of all the people I love,
chose to focus on my husband of 22 years... KARL

He is an awesome husband. He is even enclosing our carport to make a craft room just for ME!


He framed the bay window all by himself - the window didn't come with instructions so he looked online and figured out how to do it himself! Here he is showing off the framing of the bottom of the bay window before he covered it up.


He is such a good dad... he even goes to Disney Princess on Ice and lets his daughter cast a spell on him with a wand he bought her while at the show.


He is very active in the boy scouts with his sons. He got the pin when Austin received his 1st Class last month.


He even spends time with his daughter when she is in the hospital. Karl stayed over night one night when I had a migraine. He did a really good job taking care of Jessica.


I couldn't have ever asked for a better husband. I am so very blessed to have him by my side for 22+ years. He tells me that he loves me and that I'm beautiful every single day.

What does your handwriting say about you?

What Your Handwriting Says About You

You are a fairly energetic person. You know how do pace yourself, and you deal well with stress. You are somewhat outgoing, but you're not a natural extrovert. You think first before you act. You tend to be independent, rational, and logical. You are extravagant, over the top, and indulgent. You set trends and influence people. You need a bit of space in your life, but you're not a recluse. You expect people to give you a small amount of privacy, and you respect their privacy as well. You are somewhat traditional, but you are also open to change. You listen to your head and your heart. You are a good communicator. You work hard to get your ideas across effectively.

What Does Your Handwriting Say About You?

Need a Little Giggle?

Need a Little Giggle? Then head on over to my "Much Adieu About Nothing" blog. I recently added 3 videos that I really enjoyed. I've been neglecting my 2 other blogs and they are feeling quite jealous. I've had some serious posts here so I thought I'd share some funny things on my more fun blog. I keep shoving cake at my dieting blog to shut it up so you may not see an update over there for awhile. hehe...

Anyway, I just thought I'd let you all know that there's some fun stuff over there. I like to take time to giggle even when life is busy and at times overwhelming.

I hope you take some time to giggle every day too.

Continued Prayers for Paige

I have asked for prayers for Paige a couple of times and I'm asking for prayers for her again. The last time I updated was when she was being flown to another hospital to be listed for a heart transplant. Well, come to find out, she doesn't qualify for a transplant at this point due to many things, including brain damage from 2 strokes. Paige is unconscious most of the time and when she is awake she can't move, speak, track anything with her eyes or even respond to sound. Her oxygen saturations were very low and she has an infection. She took a turn for the worse and they had to take her in for a cardiac cath to try to open a blockage. That didn't work so they had to do surgery to correct it. Paige's oxygen sats are better now but not quite as good as the doctors were hoping for. She has been in ICU for over a month now. I can only imagine how upsetting and tiring this is for her parents. They are away from home, job and family, including their son. Please continue praying for Paige and her family. My heart truly goes out to them.

PINK

This week's theme is PINK... Jessica's and my favorite color! I hope you enjoy the photos!



Jessica riding a horse for the first time! Of course Jess is wearing PINK!



I took this picture of a sunset that I took out of the window of Jessica's hospital room last month. Several doctors and nurses were asking to peek through our windows since we had the best view! Notice the PINK among the many colors in the sunset.



Jessica all dressed up in her PINK princess dress and her PINK crown. She is all ready to go meet the Cinderella and Belle before going to the "Disney Princess on Ice" show.


Cinderella, Jessica and Belle in front of a PINK display advertising the Disney Princess on Ice show. Several girls from our local Tu Nidito group got a private visit with these princesses and then dinner at a Mexican restaurant before going to the show.


And finally, here is my PINK laptop computer bag! The good thing is that part of the proceeds go towards breast cancer research... the bad thing is that the zipper on it broke already! I'm waiting for the store to get more of these bags in so I can exchange it for another one. I don't want a boring black laptop bag... and of course I want to support the breast cancer research whenever possible.


I hope you have enjoyed a few of the pink pictures I posted. If my boys would only wear pink, they could be in this post too. hehe...

PhotoHunters: Practical and Smelly

This week is a 2-fer... a Two fer One Photo Hunters. I didn't get a chance to post the ones I had picked out last week so I am posting this week's and last week's together:

This week's theme is PRACTICAL:

Here is a Practical use for the quilt that Mrs. H and her mother made for Jessica:


Here is the front of the quilt... HARRY POTTER!!! Jess still loves it sooooo much!


A practical way for Jess to get to school and haul her oxygen... and her stuffed monkey whose head is poking out of her purple princess backpack. hehe.. she's so cute!


A practical use for a flowerpot (which I painted)



Last week's theme: SMELLY:


Smelly cow.....


Smelly dope... (no, I'm NOT talking about the officer. haha!)