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!)

Update on Miss Jess

It seems that the Procainamide is helping! wOOt! Jessica still has periods of time where she says her heart is beating fast or hard but they don't last long - and they don't seem to be happening as often. We saw the Peds Cardiologist last Thursday and he said that she looked good! We did an EKG and it is the same as prior to the meds (they did an EKG several times while she was in the hospital). So everything looks pretty good! The doctor asked me if I wanted him to order a holter monitor and I said yes. He asked me why since Jess seems to be feeling better and do I REALLY want to know he was going to order a holter monitor. Yes, I REALLY want to know exactly how many PVCs Jess is actually having. I'm still waiting for the hospital to call me to set it up. I haven't called them since it's been a hugely hectic week and I'm not extremely worried about it. Jessica told me last night that her heart was beating "crazy" so I put the pulse ox on her. She was having some PVCs but they weren't in a pattern - just random. After a few minutes she went into a pretty steady rhythm and she was able to settle down and go to sleep. She doesn't have nearly as many PVCs when she is sleeping so I told her that what she needs to do is to go to sleep and then they will stop. I'm not sure if that will work but maybe it will give her some motivation to relax and that it's OK to go to sleep. She has been afraid to go to sleep for fear that she won't wake up.

This last Monday we had our first Tu Nidito group meeting of the year (they go by school year). It was so nice to be back. Jessica LOVES going to Tu Nidito and even though it's quite a drive for us and Jess gets tired easily, she did really well! She just about knocked me over when at the beginning of the group they had us all join together and asked if there were any announcements - Jess raised her hand and said, "I am out of the hospital because they found a medicine to CURE my heart!" Several people started clapping and many parents who know us were looking at me with very puzzled looks on their faces. I stepped in and said, "I need to qualify that - they found a medicine to help get rid of most of the extra heart-beats". Jessica knows that. In fact, on the way there she asked me if she could announce that she was home and has a medicine to get rid of the PVCs. It was just a slip of the tongue since she was nervous. After everyone separated to their classrooms and us adults were alone, I broke down and cried, telling the other parents that Jessica's heart disease is progressing and even though we have a medication to help with the PVCs, she is dying. The medication won't prevent tachycardia or a sudden heart attack. I told them that we found all this out right before my birthday. Three years ago right before my birthday Jess was admitted into a home hospice program because she was having lung bleeds practically daily. Now she is having 10,000 PVCs daily. I wonder what she is going to do in 3 years from now for my birthday? I started laughing through my tears. Knowing her, she will still be here trying to find new ways to scare me. LOL! Later, one of the other moms said that I was her hero and that she didn't know how I do it... that I've been caring for a child with a lot of health problems for 19 years. She's only been doing it for 4. I told her that in 19 years from now she will still be doing it for her daughter because she is her daughter. That's how I do it. She's my daughter - so I do whatever I have to do. Another mom chimed in that we (meaning me and Karl) have a great sense of humor and that helps. I laughed and said that we have a SICK sense of humor. Jessica has been using her hand to show me how her heart feels. She will make a fist and then open it wide and close it, open wide and close it. I tease her and say, Jessica, it's when your heart does this (I hold my closed fist up) that we need to worry. She says, "Oh MOoooooom!" and laughs.

Today is a very special day for Miss Jess. The Disney Princess on Ice is in town and our local support group, Tu Nidito, has arranged for the girls to have dinner at a Mansion downtown and then have a limo ride to the show! They are providing 4 tickets to each girl. Jessica is sooooo excited to go! Austin wants to go to spend time with Jessica and of course Karl and I want to go too! Brandon and Justen don't really mind missing it so they will stay at home and hang out together... hopefully not harming each other or the house. LOL!

Last week Austin took a spill off his scooter and broke his fall with his face and knee! He broke a tooth and was pretty banged up. That was on Monday. Tuesday I took him to the dentist and they did an x-ray, etc. The dentist showed me where the nerve was exposed. Anyway, he needed a root canal. :*( The dentist was able to do about 80% of the root canal but had to stop because there was too much bleeding in the area. So we went back on Thursday to finish it up.... the girls at the office had forgotten to call me and reschedule so we made the trip for nothing! At least they are only a few miles away. We went back on Monday and they were able to finish the root canal and reconstruct the tooth BUT... of course there's always a BUT... the tooth is loose and he may lose it. He is instructed to not bite with that tooth and to just leave it alone. We are to see him in 2 weeks and see how the tooth is doing at that time. Of course we had to pay for the root canal and tooth reconstruction at the time of service. I told the dentist that I had a dream that we paid him $800 for him to fix the tooth and then he ended up pulling it just 2 days later! He said, "that's not a dream... that's a nightmare!" Fortunately we have good insurance and out of $1,000+ we only had to pay $250. Of course that's not pocket change for us but we were able to do it. Austin has been such a trooper through this whole ordeal. He was quite traumatised at first but was able to settle down. The first visit to the dentist he asked for the "gas" and he was quite comfortable with it. The second visit was supposed to be very easy and since the nerve was already dead, they didn't give him anything. The dentist told him that if he felt any pain to stop him and he would give him something. Well, apparently Austin didn't understand the last part and when they were done he came out pretty shaken up. It broke my heart! But like a real trooper he got over it pretty quickly and was able to go home and enjoy the rest of the evening. Austin has healed up quite well but here's a couple of pictures the day of his accident... in fact, his knee and face looked worse the day after!




It's amazing how God works... He watches over us and blesses us in ways we don't even realize. Karl and I have been faithfully paying our tithing, having faith that we will be blessed. Last Friday I had a Creative Memories event and had quite a few ladies come. It was pretty hectic to start with - we were short quite a few tables but with Karl's and Justen's help we were able to locate and set up enough tables. My customers had a great time and kept me busy the whole night. I had a couple of new customers who really enjoyed themselves and want to come to more events. After all was said and done, I had a lot of sales... all of which was product that I had in stock! I earned enough to be able to pay for the work done on Austin's tooth and still have enough to place an order to replace some of the product that I like to keep in stock. Of course I'll be paying tithing on the profits. (For those who would like to know, I earn 30% on the product I sell.... and of course that's 30% discount on whatever I purchase for myself.) I have a CM home event this Saturday with a very sweet lady. SHE contacted me and asked to do one in her home. I haven't done a home show in at least a year! So I'm kind of nervous... but one of my other really great customers will be there too so I feel more at ease. I keep telling myself that I don't need to be nervous... just go and enjoy myself. I love what I do and I love the products... I do this for FUN, not for the sales so if I make some money GREAT! If not, then at least I got out of the house and had some fun with adult women! hehe!

Last night my mom called and I was telling her that my stomach hasn't been feeling very well lately and that I've been having more anxiety. Then I told her about all the appointments that I've had with Jess and Austin and how exhausted I was before even going to my CM event and that I needed all weekend to recover. All the things I've gone through with Jess and Austin are very emotionally draining and then of course all the running around is tiring. My mom said that it made her tired just hearing about all that I've been through the last couple of weeks. I realized , well, DUH....... no wonder my stomach isn't feeling well and I've had more anxiety. LOL! I need to give myself a break and pray for a boring week next week. haha!

Are you ready for the cold and flu season?

Here's a little something to lighten the mood around here:

My british friend Dan is always talking about the "man flu" and how women get colds but he gets the "man flu". Another british friend of mine, Debbie, sent me this video and I thought of Dan immediately! I just had to share it here. Enjoy!

I swear, if the sick man on the couch had long hair, it could be Dan! haha!

Urgent prayers for our friend, Paige - and great update on Lindley

I had asked for prayers for our friend, Paige, last week who had some complications following her surgery. Paige has not done well and has been going down-hill. I just found out that she was flown to another hospital to receive a heart transplant because her heart is doing so badly. She is in critical condition and desperately needs a heart soon. My heart goes out to her family and loved ones. My friend Cathy has been updating me about Paige. Cathy had a son, Jason, who passed away under similar circumstances on Aug 9, 2001. I made a webpage honoring Jason here. Cathy and I had become good friends online before Jason passed away and we finally got to meet in person a few years later - the same time that I met Jenn (Paige's mom). Fortunately Cathy and Jenn live only about 2 hours away from each other and have been able to meet up more over the years. Cathy and her husband were able to go visit Paige just over a week ago. What great friends they are to support others when they have been through so much themselves. In fact, Cathy volunteers her time to the CHD quit project making quiltblocks honoring other children born with CHD. She made Jessica's quilt block not long after Jason passed away. Sorry I got side tracked, but I just love these families so much! I wish I could be there in person to hold a hand, lend a listening ear or give a hug when needed. I appreciate any additional good thoughts and prayers for Paige, her family and those who love her.

On a positive note, our friend Lindley did very well through her surgery and is at home! Of course she is still healing but how happy she must be to sleep in her own bed - or one of her sibling's beds! She is keeping her momma on her toes of course. Hopefully they will be able to settle in to a new routine and that Lindley will not be as nervous about everything. (((hugs))) to you sweetie! [You can read more about how she is doing on her mom's blog JennyHaHa Flaw and Disorder. ]

Man Made Card

I enjoy making cards as well as scrapbooking and of course have all my own tools to make them. Karl has his own workshop and loves woodworking and is currently building me a craft room. When I saw this video I just had to laugh... this would definitely be Karl's way of making a card! ENJOY!

Apparently this video isn't working here so here is the link to see it:
MAN MADE CARD

Prayer Request for two little girls

The first little girl's name if Paige. She had surgery to take down the "fontan" because her body has not been able to adapt to the "fontan" circulation. (The "fontan" is a surgery that changes the way the blood is circulated from the heart - it allows more blood to get oxygenated but sometimes the patient's body can't handle it and they develope many complications) Paige has had a very rough time this last year and it was decided that they needed to undo the fontan circulation in order to help her body out. Her surgery was on Monday and she is having some complications to the surgery. Paige has a blood clot just outside her brain and the doctors are trying to get it to disolve by putting her on blood thinners. She is having some difficulties that I think are similar to Jessica's after she had a stroke. We don't know if Paige has suffered from a stroke, I'm just remembering what we went through with Miss Jess. Please pray that Paige is able to recover from this surgery and that she is able to regain her health. Please pray for her parents as they are devistated and only want the best for her. Several years ago I went to KS to a CHD quilt show. I met Jenn in person and she is one of the sweetest people I know. I had gotten to know her online and it was awesome meeting her in person.

The second little girl is Lindley, Jenny's daughter. I had a prayer request for her a couple of days ago. Lindley was supposed to have surgery yesterday but her mom hasn't updated her blog and I haven't received an email from her... so I don't know how it went. One of Jenny's friends made a button that I am posting here and on the sidebar. I will post any updates on these two sweet girls as I get them.

Edit: I just got this update about Lindley:

Hello Friends!

Lindley's surgery went well yesterday! They were able to repair the valve instead of replace it, and she has practically no leakage now! The breathing tube was taken out before we even saw her. About 5 more tubes and iv's were taken out today. She still has a central line in that goes to the heart itself as well as a couple of iv's in her feet.

She went into surgery about 1 p.m. yesterday and was finished a little before 6:30 p.m. We've been really happy with the medical care she's receiving. They're keeping her fairly sedated. She's had her issues with pain and nausea, but they don't drag on. She's having a hard time understanding why I won't take the tube out of her neck or give her something to drink. She just wanted to see her twin, but Gracie was scared of her since she's hooked up to so many machines. So she still needs prayers for comfort and recovery.

We're so grateful for all your thoughts and prayers! I'll provide updates as I can.

Love,
Jennifer

Thank you for praying for my friends and their children. You all have been such an awesome support to me and my family, I appreciate your willingness to offer that support to these other families.