Tuesday, December 25, 2007

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!

Wednesday, December 19, 2007

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?)

Monday, December 17, 2007

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.

Sunday, December 16, 2007

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.

Saturday, December 08, 2007

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.


Sunday, November 18, 2007

Be The Blog

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

Be The Blog 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.



Wednesday, November 14, 2007

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.

Tuesday, October 30, 2007

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.

Saturday, October 27, 2007

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...


Sunday, October 21, 2007

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!)




Wednesday, October 17, 2007

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!

Monday, October 15, 2007

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!



Saturday, October 13, 2007

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. ]

Friday, October 05, 2007

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




Wednesday, October 03, 2007

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.

Praying For Lindley

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.


Sunday, September 30, 2007

There's No Place Like Home

I'm sorry that I didn't update sooner but it's been quite hectic, as you can imagine. We've had a lot of ups and downs but the good news is that WE ARE HOME!!!

We got home yesterday (Saturday) late afternoon. After a lot of rest, a proper bath and getting her hair washed, Jessica is feeling more like herself.... the same goes for me, too. It sure can wear a person out being in the PICU for 5 days.

The Procainamide is doing a pretty good job of preventing Jessica's PVCs. There are times that she has a run of PVCs that are uncomfortable but most of the time she is PVC-free! On Saturday morning she kept looking at the monitor and saying, "Look mom! Zero PVCs!" There have been times that her heart beat has gone into trigeminy (every third heartbeat is a PVC) but it's not nearly as often as it was when we first were admitted to the hospital. Back then she was in trigenimy at least as often as she was in sinus rhythm.

It has been a pain trying to find a pharmacy that carries Procainamide in town. We finally had to have the hospital pharmacy fill a 4-day supply until our pharmacy could get it in. Just when we thought we didn't have to worry about filling the prescription, our pharmacy called and told us that they can't even order it - apparently their supplier doesn't handle that particular medication. So... I had to call around and find another pharmacy who can order it. I finally found a pharmacy who says they can get it in by tomorrow but we'll see what happens when I call and see if the script has been filled. If all else fails, we could get the prescription through the hospital out-patient pharmacy - except that they don't accept our insurance! I had to pay cash for the 4-day supply of Procainamide. I just can't believe that it's been such a mess trying to get the medication. At first the out-patient pharmacy at the hospital tried telling me that they were out of the meds. I told them that my daughter has been in the PICU all week receiving that medication and that we had called all around town trying to find it and that NOBODY had it. There's no way we were going to keep her in the hospital all weekend just to find the medicine and we weren't just about to take her home without it and let her PVCs get up to 10,000 a day again. So.... the pharmacist went downstairs and talked to the in-patient pharmacist and finally got me a 4-day supply.

I was asking my mom a rhetorical question: "Why can't just one thing go smoothly for us? .... Oh yeah... then it wouldn't be us!" lol

Speaking of my mom, please keep her in your prayers. She just had her 2nd knee replacement surgery yesterday and so far she is doing well. I believe she is going home from the hospital tomorrow. I hope her recovery goes well. She is very determined, just like last time, to do her physical therapy and exercises to help her knee recover from the surgery as quickly as possible. Go Mom!

Also, one more prayer request: My blogger friend, Jenny, has a young daughter, Lindley, who is having open heart surgery on Oct 2nd. The family has to travel to another city for the surgery and of course it's going to be difficult on everyone involved.... including the 3 toddlers! The daughter who is undergoing the surgery is a toddler twin and has a younger brother. Jenny calls them the toddler trio. They are very cute - and BUSY! hehe... I love Jenny's humor and I also love her caring support. So please keep them all in your prayers this week. I hope that Jenny will be able to update her blog so that we will know how Lindley is doing.

I am guarded about Jessica's health right now. She has been very tired the last few days and this can be a side-effect from the Procainamide... but it could also be from not getting enough sleep at the hospital. You know how it goes... you get woken up all the time whether it's on purpose or not. One moron rode his floor cleaning machine into our room while Jess and I were taking a nap. Jessica's door was closed for a reason! gggrrr.... Then there's the monitors going off for no reason and the sounds from other patient's rooms, etc. I'm really hoping that's why Jess has been so tired the last couple of days. I'll have to keep an eye on it and just wait and see.

I do have to hand it to the nurses, techs and doctors who cared for us in the PICU. They were amazing and very kind. They actually listened to me and followed my lead as to when Jessica's meds were due, what her O2 sats are usually, and they even joked about hiring me on as a nurse since I am so knowledgeable about Jessica's medical stuff. Karl asked if they could give me an honorary degree and I said that I should get one in "JESSICA". LOL! One thing that surprised me was how low Jessica's oxygen gets when doing very little activity. Every time I helped Jess to the bathroom - which was less than 10 feet away from her bed, her pulse-ox would be below 60% (usually 55 - 58% and once even 54%) when I got her back into bed. It makes me wonder how low she is at home when she walks around the house and is gasping for air. We only do spot checks with the pulse-ox at home so I didn't know that she was dropping that low that often. Our doctors don't want us to be so concerned about the numbers on the monitors that we miss out on enjoying what we can with Jess. I completely agree with that and that's why I don't check the pulse-ox too often. But it is dis-heartening that her oxygen sats get so low so easily. Another sign that her heart disease is progressing. And Doctor Tammy, if you read this, I am still holding your responsible for us not leaving the hospital until Saturday AFTERNOON, eventhough it was the pharmacy's fault! LOL! (I'm just joking!) Dr. Tammy is a resident who cared for us and she said that she would take full responsibility if we didn't get out of the hospital quickly when Jessica asked her what time we could go home on Saturday. We would have left by 12:30 or 1:00 but as I mentioned earlier, we had to try to find the meds and that took some time. Jessica had me give her blog addy to Dr. Tammy and a couple of nurses. I told them that from Jessica's blog they could find a link to mine where I include a lot more details about Jess and even my review of their performance for all the world to see. Dr. Tammy joked about reading here about how it was her fault that we didn't get home earlier. So see? It's actually YOUR fault, Dr. Tammy, that I wrote it. neener-neener.

I truly appreciate all the messages of support. It's amazing how many of you wonderful people are pulling for us. And Mary, I LAUGH at your comment: "I have never met anyone as "together" as Nancy is. " I most definitely deny it! hehe! But hey... I appreciate the prayer request for Jess and myself on your blog. You are so sweet - and apparently easily fooled.

I started this post at 9:46pm and it's now 3:11am. No, I don't type that slow... I have had a bazillion interruptions. It's frustrating to try to write down my thoughts (what few I have) and then get interrupted and have to come back and get back on track. I think I shall head off to bed. I don't want to pass out from exhaustion and drool on my keyboard. ;-)

Friday, September 28, 2007

Better Day

First I want to thank all of you for the prayers and good thoughts. I know they are helping.

Karl did an awesome job taking care of Miss Jess while I was recouping at home. I just don't know what I would do without my wonderful husband. Jess had several crying episodes while I was at home but daddy did a great job with her.

I brought Brandon and Austin to the hospital with me after they got home from school and of course Jess was overjoyed to see me. One of the electrophysiologists had increased Jessica's procainamide up to 1GM and want to do a blood level Friday evening and said that she can't go home until at least Saturday morning. Of course Jessica was quite upset that she couldn't go home today (Thursday) but the good news is that she is having A LOT LESS PVCs on the increased dose of the procainimide. She seems to have some start up at about the time she is to take a dose and then within a couple of hours after taking the procainimide she is down to 0 (that is ZERO) PVCs most of the time.

It's almost 1:00am and I am trying to get Miss Jess settled in to go to sleep. Hopefully we will get to sleep soon and have a good night.

Thank you all again for your good thoughts and prayers.

Wednesday, September 26, 2007

Discouraged..... and sick

Well, I guess I spoke too soon. After Jessica's nap this morning she started having PVCs again. Not as many as yesterday but sometimes up to 28/minute and she went into trigeminy many times as well. The doctors came by and decided to increase the procainamide from 250mg to 500. At least this way she can take it as a pill. And true to form, her 2:00pm meds didn't get there until 6:00pm! ugh!

I have been sleep deprived even before going into the hospital and my body is rebelling. I hate that part of fibromyalgia. I can go on for awhile and then suddenly my body will just say NO MORE! I end up with a migraine along with the nausea and dizziness, etc. Karl went to the hospital so that I could come home and have a nap. It was very scary for me driving home as I realized I wasn't able to concentrate as well as I should. Fortunately I made it home and went to bed for a few hours. After waking up I still felt miserable so I called Karl and he offered to stay the night with Jess. I talked to Jessica and she cried, leaving me feeling quite emotional, but as I told her, I knew I was leaving her in good hand.... her daddy is a good guy and will do a good job taking care of her. I'm having the boys get ready for bed right now and then I'm headed to bed too.

Please pray that I will feel better so that I can go back to the hospital and help Jessica deal with everything going on. Please pray that the medication will work and that she will get some relief and come home soon. Pray that Karl will be able to help Jess tonight and that he will get some rest also. My sons are all doing ok but please pray that they continue to hang in there. I have a feeling that Jess will not be coming home tomorrow and I suspectshe will have a rough time dealing with it.

Thank you all so much!

Morning - Day 2

Jessica woke up bright and early this morning - 6:00am! Not so great considering we didn't get to sleep until 2:00am. Miss Jess had an emotional time when it was time to go to sleep so I climbed into bed with her as best as I could and helped calm her down. Poor kiddo just wants to feel better and go home.

Jess had blood drawn through her IV and then got her Procainamide. We are waiting for the breakfast trays and then hopefully we can have a nap. Hey, I can dream, can't I? (even if it is just daydreaming)

Yesterday Jessica would have up to 30 PVCs per minute and rarely a minute would go by with no PVCs. She would go into trigeminy (every third beat is a PVC) quite often and one time I saw that she had two PVCs in a row. She could have had more of the couplets but I didn't look at the alarm every time it went off since it was going off frequently. They had the alarm set to go off if she had more than 5 PVCs/minute. Fortunately the nurse turned the alams off during the night so that we could get some sleep. The nurse told me this morning that Jessica didn't go into trigenimy after she fell asleep at all! This is a good thing although she didn't seem to have PVCs while sleeping either time that she had the holter monitors on.

UPDATE 9:00AM:
We have eaten breakfast and the new nurse and attending doctors have been in to visit. So far Jessica has had NO PVCs!!!!!!! They said that usually these meds don't work this fast but apparently this one seems to be working for Miss Jess!!! I hate to get my hopes up but she is really doing well so far today. Of course when Karl and I talked to the electrophysiologist PC yesterday, we discussed the possibility of the meds causing more arrhythmias as well as sending her into v-tach. We discussed her DNR orders and they have it on the charts. The other doctors were told about the DNR orders and the PICU docs briefly discussed them with me last night. Everyone is so good to us here and they all understand that the DNR is Jessica's wish. She said several times that the tubes that are hanging on the PICU bed tower scared her. The nurse, doctor and I reassured her several times that those are in every PICU room and that they knew not to use them for her.

Jessica is munching on ice and using her new markers to draw pictures. (I bought her a set of 50 markers that are in a little tower container for her hospital stay). I'm about to fall asleep so maybe I can grab a few zzzzzzzz's while she watches TV and draws.

Thank you all for your thoughts and prayers. I feel so lost without my email addresses! Again, if you belong to a heart support group that I am unable to update, please pass this message along.

Tuesday, September 25, 2007

We have arrived

Our adventure has begun. We were supposed to be here at noon to meet the doctors and we were on time... but the doctors weren't. The nurses were expecting us and we got admitted and settled, but still no PC. Apparently there was another patient admission (I'm guessing it was an emergency-type thing) so we sat back and waited.

Jess barely got her first dose of the meds at 7:30pm so we are just getting started. Many of you know as well as I do how things can go... the doc takes forever to come to the PICU, then finally orders are placed... then the doc changes his mind about the dosage... then it takes pharmacy forever to send the meds up. So far the one dose of Procainamide hasn't done anything... either good or bad... so we just have to keep giving it to her until it gets up to a "therapeutic" level... and hopefully it will do her some good. She is having many PVCs - but there's no surprise there... that's what we're here for.

So far - so good. Jess has had a few moments of being sad to be here but she was a champ for the IV stick! She's already had a few visitors and a couple of gifts. Ahhhh...... the perks of hospital living.

It's almost 11:30pm and I am starting to get Jess ready for bed. Hopefully we'll be able to sleep - even if she does have to take the Procainamide at 2:00am.

Thank you all for your prayers and messages! I was a dufus and downloaded email before I left home but didn't get a chance to read many of them... I also don't have my email addresses here so I'm sorry that I can't email you all. If you belong to a heart support group that doesn't get updated, please pass my updates along.

Thanks again!
Nancy

Friday, September 21, 2007

My Bad...

I am such a bad blogger... I haven't updated in awhile and I just realized that I haven't posted about our plans for Miss Jess. I sent an email to my heart support groups but forgot to post it here. ooops! So sorry! So here is the update that I sent and as usual, thank you all for your loving support.

As you all know, Jessica is having around 10,000 PVCs (premature ventricular contractions) a day and they are NOT benign... meaning they are life threatening. For 3 weeks now she has worn different heart monitors for the doctors to study and try to see if there is anything that they can do to help her. After 3 pediatric cardiologists (two of them electrophysiologists) putting their heads together and my husband and myself discussing it, we are admitting Jessica to the hospital on Sep 25th to try a drug that could help regulate the arrhythmias. Jessica will have to be in the peds ICU unit so they can monitor her heart-rate and watch for any side effects. I asked the peds cardiologist exactly which medication they would start Jess on so that I could research it online. I want to be as prepared as possible. The drug is PROCAINAMIDE. I have been doing some research about that particular drug online and some of the side effects can be pretty bad.... that's why they are going to have Jess in the PICU for a few days. I was told from the very beginning that there is a posibility that the medication could cause worse arrhythmias but the chances are low and if the drug works, then it could bring some relief to Jess. Do any of you experts out there have any experience with this particular drug?

The bad thing about all this is that Jessica's heart disease is progressing and she will at some point, have ventricular tachycardia... which will probably take her life. The medication we are going to try should resolve the PVCs and make Jess more comfortable but all studies show that it won't prevent the ventricular tachycardia. Karl and I are having a very hard time dealing with that information. We've known for many years that her heart defects will shorten her life and she has actually outlived anyone's expectations by a long shot.... but it's still heart breaking to see her slowly deteriorate over the years and now to know that our time is most likely short. She suffers a lot of pain every day and the arrhythmias are getting worse very quickly and are not only uncomfortable for her but they scare her so much. She is 19 years old but due to strokes and chronic lack of oxygen, she is at the level of a 6 - 7 yr old. She's my sweet little girl.

We are trying to fit in a lot of fun activities before the big hospital stay.... so Jessica, Susan (a volunteer from our Tu Nidito group) and Iwent to the theater to see Harry Potter. Our friends who own the horses came over yesterday. Unfortunately we didn't have any men around to help hoist Jessica up onto one of the horses so she didn't get to ride, but she did get to feed apples to them. I'm taking Jess for a tour of the PICU today so she can feel more comfortable being admitted there. I think that the hardest part for Jess will be: being confined to her bed for 3 days. (Hopefully she won't get sick from the meds!) I'm going to be looking out for coloring books, beads, etc... things that she can do while in bed and hooked up to the monitors. I'm trying to figure out what to take for ME to do (if Jess allows me to avert my attention away from her for a moment). I'm going to take some scrapbooking to do. I'm hoping to get pictures of Jessica riding the horse printed up so she can show them to the nurses and any visitors she might have.

I would very much appreciate any prayers and good thoughts. Hopefully the medication will do a good job and we will be home and PVC-free in just a few days. That's only a few days away and I have SO MUCH I need to do before then. Fortunately Karl has Tues-Sun off next week so he can either be at the hospital or home with the boys, getting them off to school, be there when they get home from school, etc.

Thank you all for your support and prayers.

ps: yesterday was my birthday - it's amazing to me how my children are getting older yet I remain the same age! Which is........ 29!

Wednesday, September 19, 2007

ARRR... Today Be Talk Like A Pirate Day!

AHOY Matey! Today be "International Talk Like A Pirate Day!!!" Enjoy yer day a'talkin like a pirate, ARRRRR!!!

Today also be my sister, Karen's birthday! Stop by her blog, I Made It Through Another Day! and give her a big birthday wish! I won't be tellin' her age but I will say it is the big 4-OH!!!

Happy Birthday SIS!

*
sorry Karen, it just slipped out!* arrrrrrrr

Saturday, September 08, 2007

Music

After a hiatus from doing the weekly Photo Hunters, I am back! My computer's hard drive crashed and I lost some information. We bought a new hard drive and I had to find my photos (which I had backed-up. yay!) and reinstall my favorite photo organizing program (Creative Memories - Memory Manager) and then realized that all the sorting was gone because I hadn't backed it up right. ugh! Then... my daughter started having problems with arrhythmias, etc... but I've decided that I need to do the photo hunters meme because I LOVE IT! So without further adieu, here's my music photos:


Austin and Brandon really liked Grandpa's musical dancing Santa


Austin in orchestra last year (5th grade)


Here is my nephew, Marcus, with his marching band. Marcus plays the baritone. He loves the marching band and what is so amazing is that he is doing it even while battling a cancerous brain tumor. Way to go, Marcus!


Jessica and her date, Phil, went to a special prom for teens who are dealing with serious medical problems. Jessica is in the tiara and cream blouse sitting at the table. Phil is sitting to her left and we know other the girls at the table from our Tu Nidito support group.


Some of the teens dancing at the prom.

Jessica didn't like the music to be so loud so she and Phil went into the room where photos were being taken to talk and enjoy the prom.

Just in case it isn't obvious to everyone... there is music at the prom... hence the prom pictures. hehe




Friday, September 07, 2007

FRIENDSHIP FRIDAY


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

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

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

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

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

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

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

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

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