Monday, December 23, 2013

Sweet Kennedy

When Kennedy brought home her backpack on the last day of school before Christmas break, there was a lone piece of paper with a paragraph written in her handwriting, labeled "Thankful For".  As I began reading, tears welled up in my eyes.  I was so proud of how she expressed the things that mattered most to her.  I also experienced a sweet feeling of understanding that she has for her baby brother's heart defects and how such a complex situation can be made simple in her eyes.  This is what she wrote.



Thankful For
Thanksgiving is a time to think about the things we are thankful for. First of all, I am grateful for my baby brother's heart surgery. The surgery makes his heart get better.  The heart needs to grow bigger and stronger.  I love him very much. I'm also glad for my home. My home keeps me safe from danger and bad weather.  Last, I love my family.  Kamy, Kimble,(Kolby...written on the rough draft but missing in the final copy) and Keaton.  All my family is special that I could almost cry with joy because I love them so much.  Thinking of all the things that make me happy makes me thankful everyday.
Kennedy
11-19-13


Dear Santa

The kids wrote letters to Santa this week.  Kamy and Keaton played along, even though they don't believe in Santa anymore.  Kolby, Kennedy, and Kimble (with encouragement) were all excited to share their deepest wishes in a letter to Santa.






Dear Santa,
I would like a kindle or a great tablet of some sort.  Also, I would like a computer as another option, or an Xbox.  Either one would be fine.  From Kamyren.

Dear Santa,
This year, overall, I think I got a B+ for good behavior.  I don't really want much. I would really like a good tablet, and if you can still do better, a convertable laptop that can change into a tablet, and a computer, then surprise me with my other stocking suffers.  Love, Keaton.

Dear Santa,
I hope you will come this year and get lots of cookies.  This year I would like a pair of scuba and snowboard goggles and flippers for swimming.  Have a very nice Christmas Santa.  P.S. Nice work, Elves.  Sincerely, Kolby.

Dear Santa,
I hope that you can be warm, and hello, my name is Kennedy.  First, I would like some sparkly makeup.  Second (I am not saying 'want' because I know you do not like people greedy, so that is why I'm not saying 'want'), I would like a desk with my name on it. I am 8 years old. I would like a desk because I would like to do my homework on it.  Third, I would like toothbrushes for my family (and my mom agrees with that).  I love Christmas!  Love Kennedy.

Dear Santa,
(Spoken by Kimble; written by Mom) I want a big car that is so tall.  I want presents. I want woody.  I have been good.  Thank you for the car.  Kimble.

Thursday, December 19, 2013

I Will


I will blog again.  I will!  Right now I'm done with all my markets.  All my out-of-home responsibilities.  Sigh. I can enjoy time with the family.  Last night, I made a delicious dinner and we re-arranged the kids' rooms.  The Husband turned to me and said "I could get use this again.".....meaning that I had time to make a good dinner and clean and organize (which I really like doing but haven't had time to in a LONG time).  I agreed with him.  It's good to be back.  So I repeat...I will blog again. Soon.

Sunday, November 24, 2013

Blurb Coupons

If you are still looking to buy my cookbooks, there are two coupon codes that blurb is offering.

The first one is BETTER25 (Buy two or more books and receive free shipping plus 25% off your order...great to buy extra copies for presents!). The second coupon code is BOOKEND20 which gives you 20% off any order under 75 dollars.  These codes are good only for the printed versions of my cookbooks ( I receive 10 dollars for every cookbook that is purchased, which goes into Kimble's 'heart fund'.)  You have until Dec 3rd to buy them and receive them before Dec 24th, if you are overseas.  If you are in the States, you have until Dec 13th to ensure delivery by Christmas.  (Both of these codes expire Dec 2nd.)

If you want a .pdf or an ebook, they are each 25 dollars through blurb, and I receive $20 of those dollars.  There are no coupon codes for an ebook or .pdf but they work great on your ipad or tablet and you get it instantly, and we get more money that goes directly to us to benefit Kimble.


Tuesday, November 12, 2013

Worth The Risk?

I finally heard back from Kimble's cardiologist.  It took 4 weeks for the team of doctors to discuss the results of the MRI/ECHO and decide whether Kimble will have surgery now or later.  As you can imagine, it's not an easy decision.

Kimble's heart defects are complicated, and even harder to guess at what the future holds.  There simply isn't any data out there to help the doctors decide what road is best.  Pediatric heart defects, and their repairs, are relatively new in the medical world.  There simply aren't really many adult patients over the age of 30-40 that have had surgeries as infant/children and are in their adulthood to gather data from.  Relating to Kimble, there simply isn't anyone that we can use as an example, whether this surgery versus that surgery would be good for him.  We have to go step by step, and see how Kimble's heart grows in a 4-6 month time period, and then make decisions based on what the doctors think they can do to help Kimble's heart function better with its defects.

With that, the team made their decision, which is once again to postpone the surgery that they want to do, to reverse the Glenn.  As a reminder, the Glenn is the last surgery Kimble had, at 7 months old.  It re-routed half of Kimble's bloodflow to bypass the right heart and go directly to the lungs to get oxygenated, before continuing on to the left heart.   This was done because the right heart, with its three defects, couldn't handle the full body's blood supply.  Since then, Kimble's heart has grown remarkably well, and is now considered in the "low normal" size category.  This, in itself, is truly a miracle, considering that he basically only had half a heart when he was born.

Why are they postponing surgery?  There are many reasons.  I'll go through them step by step.  First, there is ZERO data on reversing the Glenn.  This is a surgery that isn't done very often, so it's hard to guess at what complications might arise from it.  Because the heart and arteries and valves and everything else that relates to a heart surgery are small and delicate, it's a bit tricky to do. There is the added complication of the re-routing sites, and thickening of vessels, pressure differences, and teaching the heart to adapt to the new bloodflow.

Second, with the size of Kimble's heart, reversing the Glenn at this time, could disrupt the normal pacemaker of the heart.  Complications could arise and would require the surgeons to put in a mechanical pacemaker, which at 4 years old, would be a tough life decision. 

Third, the darn Tricuspid valve is simply trouble. It's never functioned well, has been the basis of all of Kimble's heart defects, and although it has grown and is allowing more bloodflow, it's mechanical difficulties really limit it's ability to function well.  There could be some major pressure problems, with the bloodflow, and it's hard to anticipate this.  If you can picture this, imagine a river flowing through a tunnel, and then opening up into another river.  If suddenly, there is a flood of water, and the tunnel opening is tiny and unsupported, then where is that massive amount of water going to go?  Well, it'll back up, it'll cause damage to the tunnel, and there might be an alternate route created and the water will go where it's not supposed to go.  Complications.

Fourth, Kimble is doing very well as he is, which is really incredible.  The doctor's can afford to wait.  They want to let his heart grow bigger because there is less risk the bigger the heart.  Plus, they would like to be able to put in a Pulmonary valve (right now it's just an opening that was done in the Cath Lab when he was a week old) and possibly surgically help the Tricuspid valve.  Both of these procedures can't be done now (for reason's not told to me) but could be addressed at a later time.  If they wait on reversing the Glenn, then it's possible they can do everything at once, thus eliminating the need for separate surgeries.

For these four main reasons, Kimble's surgical team is postponing the surgery.  They aren't giving up on reversing the Glenn.  They all think it could greatly improve Kimble's heart function for his lifetime, which we hope will be long and joyous.  However, for now, the risks greatly outweigh the benefits.  We will wait, and address it again, probably in a year.

This gives us time to continue to save up for his surgical costs.  If you haven't already, please consider buying my cookbook(s) to help benefit Kimble and our family.  There are three options to purchase (printed book, ebook, or .pdf).  We will be having more surgeries.  With Kimble's complex heart defects, it's not a matter of "if", but a matter of "when".  Spread the word. Buy cookbooks as gifts for family and friends.  Please continue to help.  We all appreciate it.




Friday, October 25, 2013

My Second Cookbook!!

It's  ready!  It's been checked and  re-checked more times than I can count. I have the pages etched in my mind and the taste of the food still lingering in my memory.  My second cookbook is ready for purchase!

Some of you may be new to my blog, so I'll start at the beginning.  Before my fifth child was born (Kimble), we found out that he had severe congenital heart defects.  In order to offset some of the medical costs associated with his scheduled surgeries, I made a cookbook.  I published it through Blurb and made the cookbook available to the public.  All proceeds went to help pay for medical bills.

The first cookbook, named after my blog and titled "Just Because I Like To Cook" was a great success.  Many people bought it and even better, they liked the recipes in it.  Although the formatting isn't incredible, there are some great recipes in the book.

Fast forward to today.  Kimble is preparing for his fourth heart surgery.  More expenses are involved in his care.  We need a way to pay for all the extra costs.  Urged on by all the feedback from everyone about the first cookbook, and after hearing "When is your second cookbook coming out?" so many times, I have made another cookbook!

This cookbook, titled "Just Because I Like To Cook {More}" is even better than the first cookbook!  Not only is the formatting much better, and also that there is a picture to go with every recipe, but the recipes are amazing!  They are really spectacular. I'm so pleased with everything in this cookbook.  Simply Delicious!

Another thing that pleases me, is that this cookbook (and now my first cookbook too) can be downloaded to your iPad, OR you can have a softcover printed book, OR you can purchase a .pdf to use on another device (it shows up great on my kindle!)  Three options available. Yay!

Here's the breakdown: I get $10 dollars for every printed book, $20 dollars for every iPad download, and $20 dollars for every .pdf download.  This is to benefit the medical costs associated with Kimble's 4th heart surgery.

Please share the link with your friends and family. Share our story.  Encourage people to buy the cookbook. It really is a spectacular cookbook.  You'll get over 100 recipes that you will love, plus you will help out our family.  (This will make a great Christmas gift!!) Thank you so much! Buy the cookbook HERE!

(PS:  Is my comment section working?  Could someone leave a comment so I know if it's working or not?)

Monday, October 21, 2013

Blankets Blankets!

We are just a few weeks away from donating blankets to The Children's Hospital in Denver again.  This will be our fourth year doing it.  The blanket number has dwindled down over the years, but we've always managed to have at least 300 blankets donated, which is the number of patients the hospital normally takes care of in a monthly period.  Our goal is always to have every patient receive a blanket in the month of November.

This year, I'm struggling to gather my share of blankets!  I need more blankets donated!  If you have an blankets you can send me (or if you are local, I'll pick them up) please get them to me before November 8th.  That is the day we donate.  If you want to mail them to me, then email me for my address.  (kamyrensmiles@hotmail.com).

Any size. Any type. Any style. The blankets just  need to be new.  They can be storebought or handmade.  If you trust me to do this, you can paypal me your money that you would spend buying a blanket, and I'll go buy one for you and add it to the collection.  I just really need more blankets!  Please help me give comfort to all the special kids that are in the hospital over the holidays.

I make blankets and donate them, and this year Kamy is learning to make a blanket and she is donating it as well.   It's fun and rewarding!  Please join us!

Wednesday, October 16, 2013

Will He Have Surgery?


We are at that stage again where we (and by 'we' I mean his surgical team) are deciding whether Kimble will have his next surgery in the next few months.  If his heart is ready, we will have his surgery soon.  If it's not ready, then we'll delay it again just like we did last Fall.  So, how do we know if he is ready?  We start some tests again.

Yesterday, Kimble had his first round of testing at Children's Hospital.  He had an MRI and an Echo, both of which he needed to be sedated for.  Although they are routine tests, it's still difficult to watch your child go through procedures.

We left early in the morning to arrive on time.  We left just about the same time as the school kids, so I took this picture of everyone right before we departed.


Kimble fell asleep quickly enough on the drive,which helped a lot because if he is asleep, he can't ask for food and drink!  He needed to be fasting, for the sedation, so I was glad the appointment was relatively early in the day.





When we arrived and began the paperwork for the MRI, we were told that we had to change into scrubs so we could take Kimble into the MRI room and be with him as he was sedated.  So we happily changed into scrubs, and as a bonus, we got to keep them!  Fun!



Kimble was not happy at this point. He was hungry and thirsty and didn't understand why we couldn't give him anything.  He also fought the anesthesia a bit ("Boy is he strong-willed!" said the Anesthesiologist) and it took longer to get him under.  Just before he blacked out, I told him I loved him.  Kimble looked into my eyes, brought up his hand and placed it on my cheek in a loving gesture and opened his mouth to say something just as his eyes started closing.  He made me cry!  If I could read his mind, I'd guess that he was about to say "I love you most, momma", which is what he always says to me when I tell him I love him.

So, he was set.  We expected him to be under anesthesia for 4-5 hours, with the MRI and then the sedated Echo.  Heath and I went to chat with Dr. Younoszai (a member of our surgical team and someone we have come to consider a friend) and we discussed many things, including his opinion on whether or not Kimble will have surgery in a month or two.  We also toured the new wing of the CICU and then we grabbed some lunch.  After that, we still had a few hours, so we settled down to wait.  The Husband took a short nap and I read a few chapters in a book.  Before long, it was time to go back to Pre/Post waiting room and wait for Kimble to be in recovery.


Kimble was still under anesthesia when they brought us back to him.  His special little horsie (we had given it to him that morning, in addition to a Backyardigans book that we got him) was propping up his oxygen mask and was strategically placed to be right there to comfort Kimble when he woke up.




After about 30 minutes, he woke up and although he was groggy for a little bit, he bounced right back.  When Kimble comes out of anesthesia, he is ravenous and very thirsty, so he asked for juice and crackers, which his nurse provided, and he downed them!  After he ate, he was happy.  He watched Toy Story for a little bit, until he proved that he wasn't going to be sick or have any ill effects from the anesthesia.


Then, we came home!  Kimble was escorted out of the hospital in a wagon, which was stocked up with juice and crackers!  We got home about 5pm, having left at 6:45am.  We were met by the kids (the older one's were home after school and the younger ones had been at a friend's house, and had dinner brought to us by a friend.  After that, we were all in bed by 8:30.  I think we were all emotionally exhausted!

So, the results of the tests will be discussed by our team and then they will tell us what is decided.  Basically, it comes down to having surgery now or waiting another year-ish.  We are pretty positive that his heart is ready for the next surgery, so we are planning on that.  We requested that the surgery be no sooner than January (my November and December are booked already!).  We are anxious to know the results!!

Wednesday, October 2, 2013

Furlough+Shutdown=Difficult Times

I don't often speak with great detail about The Husband's job.  As much as I post on this blog, there are still a great many things that we keep private to the world at large.  Suffice it to say that we are former military, and still work in conjunction with the government.  So now it should come as no surprise that we have been experiencing the brunt of the government's inability to decide on budgets. 

While they make laws and pass bills that keep their paychecks safe and secure, and padded with regular raises and boosts of expenditures, and then decide that people who make MUCH less than them go without pay for unknown periods of time, we have been suffering.

Hello Government Pigs.  Let me introduce you to my family.  We survive on a one-income paycheck, providing for seven members of our immediate family.  We aren't extravagant with our purchases and we keep our monthly bills to a minimum.  We do not have cable television or home phone, nor do we subscribe to any magazines or newspapers.  We have two vehicles which are paid off.  The Husband often rides his bicycle to work, to save on gas costs.  We check out books from the library instead of buying them. We hardly ever eat out or have entertainment expenses.  We pay a hefty amount in insurance premiums every month because we have a child with complex congenital heart defects.  We think Obamacare sucks.  Our kids walk to school.  We attend church every Sunday, as well as church activities throughout the week.  We budget every penny.  We have three kids in glasses and three kids requiring orthodontic braces.  We cut our children's hair and cook every meal they eat.  We sew up holes in jeans and wear the same Halloween costumes year after year. The Husband eats peanut butter sandwiches for lunch while his co-workers go out to eat.  We hand-make gifts for each other.  We donate to our church.  We go on hikes as a family.  In other words...we live frugally.

Now, having barely recovered from the furlough this summer, and having only one regular paycheck since all of that happened, we are now suffering from the government shutdown.  The Husband is home. He can't go into work.  He won't get paid.  Oh, he still has his job, but what good does it do if he can't do it and provide for his family?

We can't do anything except hope that it gets resolved quickly.  Also, it has lit a fire under our bellies to look for employment outside of the government realm.  Twice screwed...we are moving on.  The Husband is using his time off to apply for other jobs.

I am also doing everything I can to keep cost at minimum.  With bills to pay and no paycheck coming in, it's going to be difficult.  However, we are a strong family.  We love and support each other. We will get through this. 

To help as much as I can, I've listed a bunch of stuff on Etsy.  Check out the link on my sidebar or go to Krinklekut.  If there is something you are looking for that I don't have listed, just message me and I'll put it up for you.  If you do purchase something, please know that every little bit helps and I appreciate it.  Tell your friends.  Spread the word.  We've got to help each other, because goodness knows the government won't.

Monday, September 23, 2013

I'd Like To Catch Up...

So the last time I blogged regularly, the kids were just getting out of school for the summer.  I have tons of pictures (thanks to instagram!) and tons of info on our life happenings, but no time to blog!  I seriously never thought I'd fall behind on my blog.  It's extremely important to me to document our family history.  That being said, I'll for sure get to it, but honestly it probably won't happen until December.

The biggest thing that has been keeping me occupied has been my little business KrinkleKut.  Although I don't have much listed on Etsy, (you can find me on Facebook, too!), I've been super busy locally.  This year, we tried to focus on building KrinkleKut as much as we could, and thus see if it is something we want to continue.  We've made great growth, and are just getting into the super busy season filled with holiday craft shows.  Stay tuned for the results of that.

The kids are all back in school again.

We are exploring options and trying to figure out how to help Kolby have an easier time learning.

Kamy and Keaton are both in middle school.  Kamy has been busy with a regular babysitting job for a neighbor, and Keaton requested to stay afterschool for a weight-lifting class because "I have super skinny arms and I need to get muscles now that I'm in middle school!"

Kennedy has really grown up a lot and she is doing really well in school.

We are exploring the option of having Kimble attend a special needs preschool, and preparing for another surgery.

The Husband has been working very hard for us, but he was one of the (un)lucky workers who were furloughed this summer. It's been difficult.

I can't seem to find any spare time to enjoy the quiet of having kids back in school!  I sew.sew.sew all the time. I'll be glad when the season is over.

Thanks for sticking around, and for those of you who noticed that I've lacked blog posts, and asked how we were doing, I appreciate it!  Here's a picture of us this summer for you to enjoy!




Wednesday, July 17, 2013

Family Reunion Day 1

It's time! It's time!  Our much anticipated Weber Family Reunion is here!  I love my Weber Family.  So.Much.So.Much.  My parents, plus their legacy:  10 kids.  8 spouses (one couldn't make it due to military training).  32 grandkids.  1 foreign exchange student.  This makes for a total of 53 people that came together this week.  We decided to go camping as a family, and back in January, we all made our campsite reservations at a local gem called The Mudhole.  It was a place that we went camping/swimming growing up, and we thought it'd be fun to do it again.  We paired up as many families as we could, at the tent sites, planned for sharing food, snacks, equipment and kids (lol).  We had 3-4 nights reserved. Weber Family Reunion will now begin!!

 Before we went to The Mudhole, those of us who wanted to met at a family friend's house to go target shooting.  We all brought our chosen weapons (safely stored in lockboxes and all with valid permits) and ammo, and we set up a target area.  We had ear protection and cold water refreshments for the hot and dusty day.   Here is a picture of our area, with some of the brothers (and inlaws) getting targets set up.



 I was waiting my turn to shoot, while talking with my oldest brother.  I had my gun in one hand and the magazine clip in the other.  We didn't load until the signal was given and everyone was ready and stationary.  It was all very organized and safe, with two shooters at a time.


When it was the kids' turns, we all had helpers to keep everything safe.  They were able to shoot rifles, pistols, and other types of guns.  The kids were all excited to practice shooting and were very attentive to the rules of the activity.


Kimble did not shoot, and he didn't really enjoy the time there (understandably).





After a few hours at the range, we all made our way to set up camp...but our family took a slight detour.  There was another place I wanted to visit in our little town, and that was Golden China...the very best Chinese food restaurant I've ever eaten at.   It was a favorite of ours growing up, and throughout the upcoming week, many of us snuck over to Golden China to partake of it's noodle goodness.  Yum.  We ordered some rice, noodles, and two meat platters, and we ate buffet style.  The kids all loved it.



After we were sufficiently stuffed, we continued on to the campsite.  This is the little road that leads to the campsites.  So densely covered in trees.  We love The Mudhole!

The next few hours were spent welcoming every family as they pulled in...helping each other get all the tents and canopies set up...visiting with everyone and letting the cousins play...and basically getting everything ready for our first night camping.  After all the families were finished with dinner (most of us paired up with another family to share meals during the week, and we had paired up with Sharon and Nancy), we all gathered together in one central campsite.  We had a surprise for our parents!


Kimble was exhausted from the day's activities, and he fell asleep on my lap...a theme that would be reaccurring throughout the week.


Years ago, my mom's wedding ring broke, and the diamond fell out and was lost.  She was saddened by this, and at the time, couldn't afford the extra costs associated with fixing it.  So, she took the pieces of the ring and put it away in a special place.  Fast forward to earlier this year...one of my siblings had the idea to get her ring fixed.  We wanted it to be a surprise, so we didn't let my parents know what we were planning.  For months, the sibling secret op mission was underway, but  one major thing limited our progress:  We couldn't find the ring!  We had local siblings looking through her jewelry box and other places in my parent's bedroom (trying not to get caught!) but the ring could not be found. Finally, we brought my dad in on the secret, to see if he could help us locate the broken ring.

He couldn't find it either, but we did get some clues.  After a lot of searching, one sibling got lucky and found the ring!  It was imediately express mailed to my brother Ian, who brought it to a jewelry store that his wife had previously worked at.  Using her work discount, and all the money that each of us had previously put in a special "ring" account, we were able to fix my mom's wedding ring AND have a new (upgraded) diamond put in it.  The ring was completed just days before the reunion, and on this night, we planned to surprise her with it.

So after welcoming everyone officially to the start of the reunion, we had my dad get up and begin the process of building up to the end result, which was presenting my mom with her new (old) wedding ring!




She was so surprised and so happy and so amazed at our secret mission!  It was a fabulous way to begin our reuion!

Before The Reunion

The day is here!  However, before our reunion begins, we had a visit we needed to make.  Because both The Husband and I grew up here, we wanted to make a special stop at his childhood home before we joined up with my family.  We will see his family (mom, sister, brother, cousins and aunt) next week, but this stop was to see his old property; the place where he spent his days wandering and exploring and working and living.

On the way there, we stopped and took a picture with an old friend.  This giraffe statue is midway between Spokane and Newport (where we grew up) and my siblings and I used to watch for it every time we passed along this particular stretch of highway...which was often.  Sometimes we'd say "I'm not going to look at the giraffe this time!" but when we'd get to it, it was like our eyes  couldn't help but sneak a peek.  "Giraffe!" someone would say, and we would all look to him, forever displayed in a lonely field by the highway.  Hello old friend!  It's good to see you again.


 Not long after the giraffe visit, we turned down another highway and then again down an old country road, to get to The Husband's old property.  Nothing is there anymore. The doublewide trailers and equipment, satellite dishes and fencing, have all been removed.  It's just a lot of old overgrown property.  Heath walked around with the kids, showing them where different trails used to be and where he played "hoops" by a tree with an old steel hoop nailed to it's trunk.  He showed them where he used to practice baseball by throwing rocks in the air and swinging sticks to hit a homer.  It was a bit sad for him, to see the old property.  In this next picture, they are standing where his grandmother's trailer used to be, and where he lived most of the time, to help his Grandmother out.


This was part of the trail between his Grandmother's place and his mother's place.  It is well-overgrown now.


The boys found some flowers to pick.


This is the field where their family garden used to be, and behind it, by the trees, where his mother's trailer was.
 Lots of memories.  I'm glad we were able to take the time to see it again.  Someone else owns it now, or maybe the government owns it. We don't really know, but in order to not get caught trespassing (even though we told the neighboring family what we were doing) we didn't wander around long.