Healthy Lifestyle and being able to afford it? 'Possibly' :)

I so want to Thank everyone that has responded so wonderfully to my latest Facebook Post about ways to cut down cost but not cutting back on buying quality foods (if possibly Organic).
There were so many responses and ideas that I wanted to make a Blog Post out of this so I can share the information with all of you as well.
So this will be a cut and paste from responses I got but to give a big of a background on why I asked this question to begin is easy. For one I am inspired by many of you who have taken an active role in your home to turn eating habits back to the basics and back to eating healthy. I have been admittedly fallen behind the eight ball on this one for the last year or two. Not truly on purpose but out of necessity for me. It was the easier path to take to neglect the food quality we ate only because I did not make it a priority. Yes, I do tend to blame JDM on this as well as we actually had a very healthy lifestyle prior to JDM. You would think common sense would have made me be more focused on eating healthy, especially with Connor being so sick but ironically that was the one part that fell of the wagon.
The reason I am blaming JDM is easy to explain on my part. I am good at coming up with an excuse - haha. For one we started out with Connor spending almost eight weeks in the Hospital and belief it or not, Hospital Food is not truly healthy at all. At CMH, as much as we love that Hospital, having a Mc D's in the Basement did not help much. The hours for Mc D's were much more convenient then the Cafeteria and when you have a sick child who is being poked and probed and in pain, then add a twin brother who is restless sitting in a Hospital room for almost the whole day, day after day, you find that you can make them smile with a Happy Meal and an Ice Cream Cone. You on the other hand are tired and crave caffeine and sugar. So Mc D's Medium Coffee with three milk and three sugars sound heavenly and of course a Big Mac and some Fries are just perfect for a sluggish body --- yes I am sarcastic again but it sure seemed to work at that time ;)
Now we did get back home after the eight weeks in the Hospital but now we were faced for over a year with a busy schedule of Therapies, Doctor Appointments, Hospital Visits and the added challenge to School the boys while on the go. Add to this taking care of a Home and working around the finances of a disease and Home but being on the road A LOT you find out that eating healthy and cooking at home did not come easy for us at all. I did start focusing on what I bought when going to the store and I figured at least I could try to balance the junk we ate with having Organic Foods available while at home. Connor is suppose to be on a Dairy Rich Diet so we went to Free Range Chicken Eggs, to all Organic 1% Milk, lots of Yogurts and Cheeses. We started only buying Organic Meats at COSTCO and I started to buy lots of Organic Fruits. All of this and taking a good look at our financial budget led me to my facebook post yesterday. While our Grocery Bill has gotten pretty pricey we also still have the eating out and on the go bills as well. Both together are not my idea on what I want us to spend each month for food alone. I am now ready to go back into our previous lifestyle before JDM came along due to the fact that we are looking at a summer with NO therapies, and we are now stretching out the IVIG to every six weeks. This should limit our road trips for medical reasons to almost none ;)

So after all this writing, I am now handing over and paste the great ideas so many of my friends have posted:

Sunflower Market in C-Springs (Wednesday's they combine last weeks and this weeks Add's) ... Thank You Vicki and Amy!


Accept eating healthy as a Lifestyle and limit your eating out! ... Thank You Sonya and Mandy!


Start your own garden or Greenhouse ... Thank You Lynn!


Finding Meals to subsitude Meat, make batches of sauce and freeze, having Breakfast for Dinner one night a week :) Make your own Cakes and Desserts, it is cheaper and you know what goes in it. No food coloring or other chemical subsitues. Give some fats and sugar to your kids as you do not want to debrive them. Remeber a little is better then not allowing any and them craving it and having exess of it later in life. Use left over veggies to make soup. A great comfort Meal on top of being healthy. Also look for coupons for canned food and cereals, etc ... Thank You Betty and Nancy!


If you don't buy Organic wash your fruits and Veggies really well.... Thank You Robyn!


CSA, Community Shared Agriculture. You pay for your share of a farmers crop and get weekly shares. To save and have delicious organic meat you can buy part of a buffalo, cow, pig, etc from a farmer. Make sure you have lot's of freezer space ... Thank You Maddie!


Focus on Organic Meats and Eggs due to the hormones and antibiotics. Buy a Buffalo from a Rancher and have it processed by him. If you are a hunter you can hunt for your own meat (since we don't I might have to make a deal with my friends that do ;) Check out the Hackman House in WP and their Colorado Co-Ops. Good option if you can pick it up each week ... Thank You Anne!


Look into a Buying Club for meat. You sign up but only pay for what you choose to get one week a month (you decide in advance), then a few families share the cost of say, one whole cow etc. Same for veggie co-op, you only get what is in season but you only eat what is growing right now which it is healthy, too :)
http://www.eatwild.com/products/coloradoresources.htm ... Thank You Kim!


http://www.localharvest.org/ ... Thank You Brenda!




To me all of the ideas above have been wonderful and I so appreciate each and every one of you for giving advice. I am excited to try out several things that were suggested so you might see an update in the future :)


I hope what I copied and posted will help others who might be in a similar situation then we are. It does take efford and money to live healthier but as Sonya said this is a Lifestyle that I believe will pay off.

Best of Luck to all of you!

Hugs,

R A C A

• 
  

Remembering .... and Thank You!

Memorial Day ....

I know I was not raised in this country but one can not help to remember family member that has died in a war. For me it was my Great Grandfather from my Dad's side in WWI, and the much beloved Dad of my Mom, in WWII. Both I have never met but the stories have kept them alive for me. Listening about each man has taught me that their death was a great loss. For a more current war there was the heartbreaking loss of one of my best friends brother during Desert Storm. An amazing young man who never got to meet the son that was born after his death.
I know there are so many who gave their life to fight for what they believed in and in some cases they fought for what they were told to fight for. Either way the loss came at a cost for the families that loved them!

Today my family has four members in the Army. My Son In-Law, Alexander who is in the Army. My nephew Gene who is on his second deployment in Iraq. His beautiful wife, my niece and friend Tammy, who joined the Army last year, and as of this month their son Andrew.

We are also blessed to know the Olson Family. Matt, my friends Jennie's husband, has served twice in Iraq and just returned home early due to being injured while in Iraq. It was a big scare for all of us but especially for his wife and their two precious boys.

Last but not least a Thank You to my husband as well who served in the Green Berets and was stationed in Korea and Japan. He not only served his country but it made him the amazing man he is today!

The boys and I now get to enjoy the freedom that was fought for by so many... and one of the Freedoms I cherish the most on top of all is the reason you are reading this post right now. FREEDOM OF SPEECH!!!! it is something we take for granted but many do not have! I know I would be in huge trouble if that right was ever lost. Another thing I cherish so much is the right to treat everyone equal no matter what our religious or non religious beliefs are, or what our political leanings are. The beauty in respecting each other even when we do not agree.

So again we are Remembering all of you that lost their life fighting for our Freedom and Thank You to those of you still fighting for us to keep those Rights!

Hugs,

R A C A

My little Fashion Bugs :)

This is a none JDM entry but one that fits our boys to a T. We went to the Castle Rock Outlet Mall today and ended up at the GAP Store. Now I always had a love for their Blue Jeans and I do love the kids clothing they have. So my boys were as always happy to follow me in since shopping is one of their favorite things to do, even cloth shopping. This always fascinated me as I thought by having boys I would side step this experience. My dumplings however have shown even at age 3 that fashion matters a lot to them and they will make about 3 outfit changes a day. I am not even going to commend right now on their time spend on styling their hair!
So, here we go and there was this rack of Hoodies on sale with a mark off of 40%. I was so excited and called the boys over to try them on. Connor ran over, took one look and said there was something wrong with them. I asked what was wrong? He said 'Mommy, they have GAP in big letters written on the front. I can not wear something that has the name of the Store on it!!!'. Oh, precious precious boy. Leave it up to them to point out that of course it is silly to spend money and then advertise for the store. Of course that did not over rule the fact that the sweaters were cute and I wanted them to have it :)
Just tonight I again had to pick up three outfits from just one day. When did it happen that little boys don't just wear T-Shirts and Blue Jeans? Not in our home I guess.
Hope you are all having a nice Memorial Weekend. I believe I counted about 15 Campers today.

Hugs,

R A C A

About Donations!

I have wanted to post a blog about this subject for a long time but for some wicket reason I get of track each time, but finally I am sitting down to post this.

You know I am guilty of posting in the past to ask for your support of CureJM and for you to have a cause you care for. May it be Cancer, Arthritis, MS, Cerebral Palsy, AIDS etc etc. There are so many causes out there and I find that if you really listen to everyone preaching to you how important their cause is then you would go broke if you never said 'No Thank You', 'I can't' or 'I am already committed to another cause'.

NEVER should anyone feel guilty for not giving money. Let's be honest, many of us are already financially strapped and I feel at times one can feel as if there is a pressure by not giving money. We might feel as if by saying 'no' we come across as not caring. Trust me, while I make CureJM a priority it is only because I am personally impacted. Same goes to my concern about Autism as it is impacting me due to knowing and loving two little boys with Autism. Now, here is where I think you should never feel bad for NOT giving money even when asked point blank ... for one you should never over extent yourself financially, your families well being as always comes first, period. Second, there are so many ways to give and help a cause that do not include money. You can talk about the cause you care for, you can bring attention to it, run a small fundraiser like a Lemonade Stand and give the money that went over the amount the supplies cost. Those are some ideas, however, I found my greatest support for Connor in friends like you, the same friends that are reading this blog right now. Your support went above and beyond because you listened to me and you always had an open ear. You came and send cards and gifts to the boys when we were in the hospital, you came and cleaned our home and brought us food. You are being the best support by being our friends.
So follow my lead and NEVER feel guilty when asked just about everywhere around you to give. There is always a disaster somewhere, a child or adult dying somewhere. You can not give all the time. I chose a couple of causes close to my heart but even I have to say I can't give money anymore. It just makes no sense, mainly because we are in an economy right now where guilt should not impact your life style.

Please know we appreciate you all so much!

Hugs,

R A C A

Summer Time :):):)

Today was Connor's last day of Hippo Therapy for this summer :) We will take a three month break and in the end of July he will get another Occupational Therapy Evaluation and we will see then if he needs to continue with Therapy or if he is done. I am breathing a huge sight of relief because those weekly trips to Edwards, CO, have been time consuming. 1 1/2 hours one way for a 45 min Therapy Session is hard. It takes up so much of the day and the only reason I did not skip that Therapy was due to Connor enjoying it and me really seeing how he was improving physically. Now we are at a point were he is so much stronger again, his endurance levels are high and I am not sure how much more he will move forward from there. Of course he will always benefit from some kind of physical outlet but maybe we can turn it to a sport closer to home.
We have been on the 0.75 ml of Prednisone for a week now and he is doing very well. Even his Methrotrexate Injection went okay this past Tuesday. It is much more painful for him then it used to be but that is due to him being so skinny again. I can't find a fatty part on his body to safe my life. So there is not much cushioning the injection and the dosis has not gone down but up.

We are now going to go into this summer break with a focus on improving the boys reading skills and of course a balance of fun activities. We are looking at one or two possible trips and Thanks to some planning of fellow Mommy friends here in CO there might be quiet a bit of Pool time for my boys as well. I never said I would say this but not having a pool in our back yard as we had in Texas has been an adjustment. I do NOT miss the work that came with it but never less it was a lot of fun as well :)
Now today was the last day of school for the schools around here where we live and I was truly not prepared to be hit so soon with the not so much anticipated Holiday Traffic we face each summer. Now I know I chant to myself each year that I am grateful we live in a State that attracts Tourists, but oh it is hard when you sit at an intersection in our small Mountain Towns and it takes you 10 minutes to get out because you are counting numerous Campers, Fiftwheels, Trailers, Motorcycles etc etc. Today I already passed 8 Campers!!! I will tell you later what the record for this summer will be :)
I also realized again today that I must be careful what comes out of my mouth because while driving to Therapy Connor said from the back seat that he is not that excited about Summer. I was asking him why he would say something like this (expecting it had to do with me telling them a couple of weeks ago that we will have school throughout the summer), Oh NO, he said he will not like it that all the places he loves so much will be busy and full of people. Yes, the world is our playground just not during the summer and spring breaks - haha

Wishing you all a smooth start into this summer break and happy but safe travels.

Hugs,

R A C A

Rosabell the Bathtub Mouse

Once upon a time ....

.... there was a little Mouse that found it's way into the Bathtub inside a Home in the Forest. For how long she has been in the Bathtub is not so sure but while she was trying to find a way out she was startled by two shrieks. One came from a little boy who was very excited to see her and the other from the boys Mom who did not expect to see a Mouse first thing in the morning sitting in the homes Bathtub.
As it happens there were two little boys living in this house who declared within minutes that they want to keep her forever and had decided to name her 'Rosabell'. Since the Mommy of this Home was not necessarily afraid of a Mouse, she also did not want to get close enough to get her in a box to set her free. Therefor it was decided between the Mom and her boys that they should make Rosabell comfortable until the arrival of the Dad in the afternoon. So in a short amount of time Newspapers were lining the bottom of the Bathtub and a container with Water and a Cracker was added.
Rosabell life therefor was fairly comfortable for the next few hours. She was a bit on the shy side but got used to being observed, even thought she was not to trustful of those two legged visitors.
The end of her stay in the Bathtub came with the arrival from Dad who was brave and had her in a box for her journey to freedom within minutes of seeing her.
Then the expedition to Rosabell's freedom began. She got an exciting ride on a Four Wheeler to the end of the Mountain, close to a fallen over tree stump. There was a little creek within yards and the decision to set her free was made. It was a sad time for those little boys who truly would have loved to have her live in their Bathtub forever.
However, for now the Mom and Dad's wish is that little Rosabell will have a happy life out in Nature and of course will not seek out the Bathtub or their Home again!
Rosabell set out to seek new adventures and of course she lived Happily Ever After.

The End!

Rock'n'Roll Seattle Marathon, Half Marathon and Cure JM Annual National Educational Events

Rock'n'Roll Seattle Marathon, Half Marathon and Cure JM Annual National Educational Events

Tapering ....

So as of a couple days ago Connor is now officially on 0.75 ml of Prednisone. We are getting closer and closer to weaning him of those wicked Steroids and we are very excited about this. It is not just his physical appearance that has changed again but also the mood swings and all the beauty that comes with Steroids is going away. We are now scheduled for a Bone Density on June 28th when we will try to coordinate his next IVIG infusion. We are, as you can see, also pushing out the frequency of his infusions. We went from four weeks to five weeks last month, and we are now pushing it to six weeks. This will mean we have our next infusion at TCH again so we only have one trip to make that week.

Do you recall when I posted about Connor's sever headache last week, two days after the Infusion? I told Dr. Soep about it and she e-mailed me back that it most likely was due to the IVIG as she had received a message from the Center of Cancer and Blood Disorders at C-Springs that they have done a faster infusion with Connor, as they do with all the kids that never had any prior side effects to IVIG. As a result we will now go back to 6 to 8 hours. I thought it was to good to be true to be down to 3 1/2 hours... Oh well, live and learn and I am so glad that horrible headache only lasted one day for Connor.

Those are the JDM news for today and we are gearing up to a week of school. I am back to dreaming that we might be able to stay home some of the days as I was in my car for six days out of seven last week.
Ron left for Anchorage again and if the loads would not have been red and oversold we would have attempted going with him. I know, I am a contradiction after I just wrote we needed some time at home for school :) Traveling will always be worth the effort, it is as you see our trips to the Doctors and Therapy that we are not so excited about. It would have been wonderful to see Niki, Alexander and Harlow but if it won't happen this summer in Alaska then I am very hopeful we will see them lots more times once they move to the lower 48 come August. Leave it to our boys to plan a whole trip to see them :)

As to our JDM Family that is still in the hospital we are not sure yet what was and is the cause but I am hoping they will get answers today.

Wishing all of you a good week.

Hugs,

R A C A

... Sunday Mornings

So my lovely husband had promised the boys a few weeks ago a night in our bed along with us all walking up together to watch cartoons in bed.
This by itself was VERY brave of my husband as I think there isn't a King Size Bed large enough to hold four of us, two of who are wiggle worms!
The next obstacle for me was trying to get comfortable with my damaged little knee. Not sure how I was able to go on a Field Day with the boys and my only job was watching them and sitting down on the turf and getting up would leave ME with a twisted knee. Oh, yes, I am 40 now so maybe that could explain it ;) So now my knee is swollen but thanks to my husband, Motrin and Ice it is getting better, and we survived the night and it was fun having a slow Sunday morning :)

The reason I am writing so early today is due to another precious JDM Family being in need of your thoughts today. Their son passed out and is now in the Hospital undergoing an MIRI to look for bleeding in the brain. We are a close knit JDM family but it never less makes us all feel helpless not being close and being able to help. Thanks to the internet we are in each others home almost daily but due to the rare kind of disease we do not have to many of us living in the same state or even country. So Hugs to the Blosser Family in OH!!!

R A C A

Starlight Foundation :)

Tonight I promise I write just a quick note but I am posting a description of the Starlight Foundation and the wonderful things they do for Children with a Serious Illnesses AND their families!


Last month we went to a most wonderful Easter Party and today we went to a Field Day. Both days have been filled with laughter and pure fun and we are so grateful to this Foundation.


This is what their Statement reads at the C-Springs Chapter:


"The way we see it, while researchers look for cures and doctors work to restore a child's health, Starlight works to restore the entire family's spirits.


When a child is diagnosed with a serious illness, the day-to-day joys of childhood take a back seat to the rigors of treatment and hospitalization. Starlight Children’s Foundation Colorado is dedicated to improving the quality of life for children with chronic and life-threatening illnesses and life-altering injuries by providing entertainment, education and family activities that help them cope with the pain, fear and isolation of prolonged illness.
We understand what families go through when a child is sick, and how important it is to find relief from constant worry and isolation. Our programs have been proven to distract children from their pain, help them better understand and manage their illnesses, and connect families with others facing similar challenges so that no one feels alone.
Unlike any other charity, Starlight offers a comprehensive menu of outpatient, hospital-based and Web offerings that enable us to provide ongoing support for children and families — from diagnosis through the entire course of medical treatment.
Programs include:
Family activities and outings that give families a chance to have fun together away from the hospital so they can relax, regroup and return home with a renewed sense of strength and hope. The events also forge important connections between families struggling with similar issues to combat feelings of isolation.
In-hospital entertainment technology that helps kids fill hours in hospitals or treatment centers with therapeutic fun; find distraction during long or painful medical procedures; access Starlight’s online educational programs and communities; and stay connected with the outside world and keep up with school work during extended hospitalizations.
Online communities and interactive websites that help seriously ill teens connect with each other and find tips and strategies for coping with their medical conditions.
In-hospital playrooms, kid-friendly treatment rooms and special events that help ease the loneliness, fear and boredom that accompany hospital stays.
Educational programming — delivered via online interactive games, ezines, webisodes, a comic book and websites — to help sick children understand common hospital procedures and manage illnesses and injuries such as cancer, sickle cell, cystic fibrosis, asthma, Crohn’s and colitis, severe burns and kidney disease.
Research studies have found that Starlight’s programs help reduce children’s pain while helping them to better deal with, understand and manage their illnesses. In addition, Starlight programs help the child, parents and siblings experience less depression, anxiety, pain and isolation and bond as a family.
The way we see it, while researchers look for cures and doctors work to restore a child's health, Starlight works to restore the entire family's spirits.
We invite you to be a part of the growing Starlight Colorado Springs network of supporters who are making a difference in the lives of children and families suffering through childhood illness."


After reading this how can you not love them for what they do? So here is another organization, next to Make A Wish, who is just magical and brings happiness to children!

Hugs,


R A C A

Cynic or Disillusioned?

If you know and love me then bare with me tonight :) I am in one of my deeper moods and I am feeling the need to vent :)

First my thoughts are about JDM directly and the following is indirectly but you will get the feel of it.
Do I dislike and even have a hate for JDM at times? YES! but here is one important thing I want to be known. We as a family are NOT victims to JDM and we do NOT sit down and feel sorry for ourselves each and every day. The ones who are the true victims of JDM and other deadly diseases as in Autoimmune or  Cancer are the families who's kids died from it! If you have a child that is still fighting or doing fairly well or even in remission then you are still on the winning side. Is it fair your child got sick? NO, but I have been around a few families now that lost their child and no! no! no! pain will ever compare to that. I am grateful and happy with Connor's progress and I know he is still worse off then some cases and in others he is way better, but most importantly he is not dead. So who am I to complain, really?
Now this does not mean I am not going to have days when I do feel sad and frustrated at the loop that was thrown our way, and I do understand the frustration and fear of fellow JDM families. The fear when you first get the diagnosis and the pain you feel when you see pain in your child. I am NOT making light of this at all, I know and live it, but I just think at times we need perspective. I will consciously love my live because I still have everyone in it and my weekly trips are rather to a Doctor and Therapy then to a cemetery. It is as simple as that for me ...

Now comes my next complain for the night. What is happening with all the Hero and Profession worshipping?
Am I to think just because you wear a certain uniform or you have a certain job means I have to be in awe of you and believe everything you say?
Let's take on Religion again. I know many have been offended of my previous postings on questioning my beliefs, but is it really about my beliefs or those that are trying to sell it to me. Should I honestly listen to Pastors who lie and deceive? We have a Church here in C-Springs who acted all shocked when their leader turned out to be not the wonderful family man he preached to be but instead was having sex out of his marriage with another man and taking drugs, all while publicly speaking against Homosexuality ... mmmhhh, would we call that a Hypocrit?
Then we have this Pastor a few weeks ago who told his congregation that he was a Navy Seal and Hero, only to find out he was making it all up. A PASTOR? LYING??? I am just shocked!;)  I am sure as time goes on there were about 100 Navy Seals in Team 6 that took down Osama Bin Laden. Let's just give them time to make up their story!
I could throw out several more cases like this but you get my point I think. I am trying to not even start with Rome and how holly everyone from the Catholic Church is. I am sure all the sexual abuse victims belief that as well. For years and years they raped children but hey, that's just life right! What does not kill you makes you stronger. I hope those kids are!
Now I can write all this because of course tomorrow the world will end! :):):)
How credible will that group be when we are still all up and standing tomorrow? To the ones believing in them very credible most likely. They just got the date wrong 'again'! Of course it does not matter because they will come up with another excuse to call out the end of the earth in a few more years.
Yes, I am disillusioned. I think in the big picture we humans must be very weak and we must all crave stardom in one way or another. Worst of all those who get away with it must all feel so invincible.
I just laugh at the fact that we seem to have so many Navy Seals now, retired Hero's and that Vietnam had more soldiers on the ground after the fact because all of a sudden everyone wearing a Uniform now or is retired was there and done that. Do we not realize how insulting this is to the real Hero's? Just because you served does not put you automatically on the Hero Pedestal. I have seen and heard enough corruptions, abuse and rape stories during my time as an Army Wife to know that not everyone is a shiny penny. This goes for every profession. We have so many true Hero's we do not need those with low self esteem to make up stories. I am one person you would have a hard time selling it to.

So sorry if I am once again stepping on toes but if I really am then I have to wonder what is it that bothers you about my post?
I am angry to see people in the position of power to abuse that position and get away with it.
As I said, a Cynic and quiet a bit disillusioned at times and grateful that those I call friends are the real deal. So I guess there still is hope ;)

Hugs,

R A C A

A couple of Busy but also Fun Days )

Yesterday the boys had their 'End of Year' School Pizza Party at the Cottage School that included a State Report and a State Song. I have to tell you that Connor and Alexander have been hard at work learning about the State they had picked: New York. I was and still are so proud at how much effort they put into this and the biggest challenge came in the fact that their speech could only be 20 seconds per person, so at least my dumplings had the advantage of 40 seconds :)
The afternoon at school was magical in many ways. For one they got to see their favorite teacher outside our home, Mrs. Strubble, but they also got to play with some of their school friends during recess and during their Pizza lunch. Interestingly as well was the part of bringing snack foods from the State you are talking about so we brought Milk (first Processing Plant was opened in NY in 1861) and we brought Potato Chips because our research told us that the first Potato Chip was made in NY. Who would have known? I know I did not so I am once again getting a learning experience along with our boys :)

The only sad part on Wednesday for Connor was the fact that he had a splitting headache all day but he really only let it show after school was out. He laid down most of the evening holding his head and feeling miserable. I am not sure if it could be a reaction to the latest IVIG since it was two days later. I know I heard that sever headaches are a side effect if the infusion was to fast but I am not sure about the timeline to the infusion.

Today, Connor had Hippo Therapy again and he got treated to riding a new horse. Her name is Reno and she is not the most liked Horse by some of the Handlers and Walkers. I was told that she can be moody and bratty but Connor's Therapist Amanda says she likes her because she is spirited, has spunk, has a very smooth gait and is a bit more challenging to handle and rein command. Amanda feels that Connor is at a point where he has excellent balance but needs to learn to focus a bit more. He had an easy time moving his previous gentle horses like Blinkers and Star but Reno is truly in a different category :)
I have to say at the end of the session Miss Amanda was very happy with the way Connor handled her but I have to admit that for the walkers she was not an easy horse at all. At first little Miss Reno took a bite into the lead walkers shoulder after just 5 minutes and she threw back her head which made Connor jump, she then tried to bite the walkers face after about 20 minutes and that was the point when the owner of the Center stepped in and took over. As it stands Connor did like riding her and will have her again next week as long as Reno does not hurt herself. I talked to one of the walkers and I guess Reno has been there for a long time but due to injuries she causes to herself or getting into fights with other horses leaves her out in sick time more often then her being in Therapy. I love how much I get to learn about horses and their little quirks and characters. I think each horse Connor has been able to ride made us fall in love with them.
So then we left Edwards, CO, behind at 3 pm at 55'F to head back home and we encountered the craziest snow and freezing rain weather going up the Mountains. Of course all the snow and Ice was around Woodland Park and Divide and by the time we pulled up 'our' Mountain there was the sunshine again.

There are some good news on some of our JDM Babies. One of them woke up from a coma and might possibly be released in 5 days, for the other child the cause of the infection is found but now there needs to be a Antibiotic that will work and fight the infection, Bacteria and Staff Infection. There is another child who suffered a Stroke at just 12 years old during a surgery to place the medi port. So while our decease might be rare there are so many of our numbers who are in pain, and of course the families heartbreak.
Connor also found out at school on Wednesday that one of his favorite school friends young cousin lost his fight to Cancer.
The numbers of kids dying are staggering and I know that there can not be many people that have not been affected by this in one form or another. Ether up close and personal or through friends. If you ever look for something that deserves your attention or you are looking for a cause to support, or a cause to recommend to help a fundraiser at your kids school PLEASE consider focusing on Diseases that kill our children. I truly believe there is no bigger pain in this world then loosing your child, so even if we have not lost ours, we easily could be one of the numbers and how would we feel if those around us would say they are sorry but would not make an effort to change this?

I told many of you that when the time came and I have a need I would tell you what you can do to help Connor. Here it is, for Connor, for us, pick a cause that involves children and help that cause. It does not have to be money! Just talking about it and bringing attention to it at school, at work, with friends ... I really think eventually our voices would be heard. Of course I am selfish :) so if you have no cause close to your heart then CureJM.org would be one I could easily suggest. It could after all safe Connor's life down the road or one of his friends. I know you all have the power because you already proven it to me by getting us that win with Pepsi :)

THANK YOU for always caring and always listening!

Hugs,

R A C A

School, Appointments and JDM

I could say I am not sure why JDM is the front runner on this weeks Blog Postings but I do know. For one it has been a subject in our home this week and for the other we are still all worried about the children from our extended JDM Families that are in the Hospital tonight.

Connor and Alexander had their DIEBLES Reading Test today and we are so grateful to Gateway Elementary and Miss Eve for being so wonderful in trying to work with the boys and I when it comes to trying to get caught up with their Grade Level. It is Thanks for LL Online and Mrs. Strubles wonderful Cottage School that we will be able to keep working through the summer online school and hopefully catch up to where we should be when the new school year 2011/2012 starts up.
I am happy to say that both Connor and Alexander showed progress from their last DIEBLES Test but they are still not where they should be.
This is were we are not making an excuse but I am trying to make people understand how challenging is to have your kids have the same benefits of time go into school when you are dealing with a schedule that is packed at times with Doctor Visits, Therapy, Infusions for one of your kids and then trying to balance a normal life for your other child.
Remember my blog about how I would like my favorite week to look like? I posted it a few blogs ago and called it Groundhog Day after the movie. Well, lets take last week. We left our home on Tuesday and did not return home until Friday due to the Chicago Trip and Connor's Check-up at CMH. Yes, I always thought when you Homeschool you can take your school on the road but everyone of you that travels a lot knows how tiring it is and you also want to balance the stress of going to see Doctors 'again' and having Blood taken 'again' with some fun. I still have the believe that traveling to places is an education as well and by seeing a place through the eyes of friends living there is an added bonus. Never less you miss out on sit down school work.
This week we are on the go four days out of five! We started with Infusions on Monday, we had the Reading test followed by a Pediatrician Appointment for Alexander today, tomorrow the boys have their end of year Pizza party plus the State Report with Mrs. Strubbles Class and on Thursday we are back in the car for Connor's Hippo Therapy. Now if you live in the City that might all be easily managed but for us to drive to C-Springs takes 1 hour and 15 minutes one way. So it is time consuming.
One of the reasons I wanted to post about this was due to a conversation I had this morning with a fellow JDM Family member how it is hard for our kids to keep up in school. We are, as I said before, lucky to have amazing support here in our School District but I still want it to be known that it is a challenge for many families and kids dealing with a disease that does need a lot of medical attention.
One thing that is easily overlooked and not acknowledges is the fact that the drugs your kids takes also impact how focused they are at times or what mood they might be in. STEROIDS can throw you for a loop at any time a day. We are once again lucky that Connor is now tapering down drastically on the Steroids and it shows. He is more focused again and he picked up great speed when it comes to reading, which is such a joy for me. I am truly a very proud Mom :)
Alexander, my baby boy does not take easily to reading and he of course gets more anxious when testing times come around. I wish for his sake that kids would also get tested in Math the way they test reading skills. I only say this because I know he would shine in a huge way and leave others way behind. When it comes to Math he is my little whizz kid. Today he did a page on Fractions without me even explaining it to him. He answered every challenge and there was not one mistake. Once again I am very proud of him!

My babies are now in bed and are excited for tomorrows State Report about New York and of course the following Pizza Party.
I am looking forward to having my husband home again tomorrow. He has been flying Anchorage Trips all month and has been enjoying seeing Niki, Alexander and Harlow during his layovers.

We might be getting a chance next week to head up for a 24 hour layover and  as always when we talk about the challenges of keeping a schedule I take also comfort that our crazy lifestyle teaches the boys an exposure to life that they would not get if we did have a so called 'normal' life. I think they can beat many of the Business Travelers when it comes to Airlines Miles they have flown, people they have met and foods and cultures they have experienced in their 7 years. It all has to pay of somewhere, right? :)

Goodnight my precious friends and family!

Hugs,

R A C A

JDM Front News again ....

JDM has been on the First Page today all around me. For us as a family and for Connor it was all good news today BUT for some of our fellow JDM kids who are fighting the same fight the news aren't good at all right now.

I will start with Connor's up-date. Today Connor had his IVIG infusion again at the Center of Cancer and Blood Disorders in Colorado Springs and it went very well. The Nurses working there are all wonderful, the Doctor we met was kind and compassionate and everyone there was talking very highly about our Dr. Jennifer Soep. It feels so good to know that Connor's care is in such wonderful hands. It really feels that everything was on the right track ever since we met Dr. Pachman in Chicago. She introduced us to Dr. Megan Curran which we also love and who in return brought us to Dr. Soep. What a great circle it has been. Today, Connor's infusion took just 4 hours, what a change from the 10 hours it originally took! Both Connor and Alexander did great during the Infusion and they both demanded to sit in one recliner together even thought there were about 10 of them and none was used. I am sure it has to do with school still being in but the whole time we were there there might have been two other children for a short time. I think we were the only ones that were there for 4 hours. Last time we came there we had the joy of having our Miss Jaja with us and it was nice remembering her there.
We finished our trip with a stop at COSTCO to stock up on some meats but also for my boys to eat some samples. There is no place like COSTCO for my boys to go and try out food they would never attempted at home - haha
At home I also shocked the boys by giving them the food fight they have been wishing for. They loved it but told me later that they thought it all was very sticky on the face ;)

Now, here is the part that is so hard to explain. While we as a family are so happy with the progress Connor is making there is the heartbreaking struggle and fight of some of his fellow JDM fighters out there. Just today I heard of three children that are hospitalized, one of them in the ICU, and one who had a Stroke at 12 YEARS OLD!
My battle is the conflict of being happy for us but also the pain and fear that closes my heart by thinking of the children and families that are trying to hold on. I said it last year and I am still at the same place that I wish I had an answer to the 'WHY'. No matter what I am told there never is an answer why some children and not others. Why Children, period! It will never make sense to me and that is my problem since I do not find any comfort in any explanation I was ever given.

So there are the times and days when I want to turn my back on JDM and it is easy at times because Connor is doing so well. The only reminder I have is the twice daily medicines he has to take and that has become routine. I should not fool myself because even thought Connor looks good on the outside he is still on weekly Chemo, he still takes daily Steroids and Cyclosporin and has his monthly infusion. We are still a ways off for him to even be considered in Remission, not as long as it takes so many drugs to keep him going. There will always be the shadow over us as long as there is no Cure and hearing about the struggles of other children will always bring the reminder home.

So please be happy for Connor and the progress he makes but think of the fight so many of our children are fighting.

Hugs,

R A C A

Chicago Trip & CMH Check-Up on May 12, 2011

Oh how fast this week went by but how fun it was considering we had to say Goodbye to my parents first and then go for a Doctor's Check-Up in Chicago.
We had a tearful goodbye for my Parents on Tuesday the 10th and it was as difficult as it is each time they leave. Connor, who had gotten his Methrotrexate Shot in the am was especially emotional and cried almost the whole time in the airport. Luckily the boys mood lightened again when we arrived at our Hotel in Denver that night and saw the cutest little bunny rabbit sitting there within 2 feet of us without a care in the world. We saw him a total of four times during our one night stay, very precious :)

We got to Chicago without a hitch and were spoiled by getting seats in First Class. The benefits of working for AA! We truly hit the floor running once we arrived at ORD. We spend about 15 minutes at the Hotel before Kim picked us up for a day of fun. I have to say it is a dream being friends with someone that also has two boys and completely understands their needs and wants. At first she took care of their hungry tummies by taking us back to 'Super Dawgs' for our much loved Chicago Hot Dogs, we then got to have some fun playtime at a playground close to her home. The boys had the biggest smiles seeing Grant and Evan join them. The weather on the other hand was crazy. We arrived in hot and humid weather after hearing that we got about 6 inches of Snow at home in Colorado. While at the playground it started to rain and cool down quiet a bit. We were suppose to watch Kim's boys play Baseball but that was cancelled due to lightning. We ended up having some downtime at their home before heading out for a yummy Burger and Shakes Dinner at 'Meatheads'. The crown to the end of the day came by a trip to Nickel City. It was so great to see them all laugh and have a fun time while I was impressed at how clean they kept the arcade games.
If you can't imagine how tired my dumplings were when we got to the Hotel again, I can tell you that it only took them 10 minutes to get undressed, brush teeth and fall asleep :)

The next morning we slept in and each of the boys took a shower that lasted about 20 minutes. I actually took a sound video of Connor singing how he never wants to get out of the shower. I feel a bit guilty about the water usage but gosh my boys love to shower when we are staying in Hotels.
We then rented a car and made it to the Hospital for the 1 pm appointment with Dr. Curran. The appointment over all went very well. Dr. Curran was impressed with what she was seeing and she said that it looks like the tapering is a success. Of course she also wants to see the Blood Test results from the labs they were taking that day. She also responded to Connor's begging about playing on the Trampoline and going on Roller Coasters with a request of a new Bone Density Test. We will have that done at home in Denver and she told Connor that she will give him a response when she sees those test results. Can you imagine that Connor wants this test done asap? ;)
Surprisingly we were done with the Appointment by about 2:45 pm! before we were able to leave however we had to have Connor's labs taken and that was the only speed bump on the road that day. We put the EMLA cream on his port with plenty of time to work but when we showed up at the lab they told us they would have to take it from his arm. Connor was very upset about this and he cried the whole time saying it hurt to much. Now this all came after he also had asked Dr. Curran when his port can come out so he could play contact sports. I asked him if he still wants the port out after the experience in the Lab and he said 'No Way!'.
We had planned to meet Candy for Dinner that day right after our Hospital Check-up but since we were so early we decided to head to Lincoln Park for the Zoo. We ended up at the Farm Zoo followed with a drive along the Lake Shore Drive. It was a very beautiful sunny and warm day. At around 5:15 pm we found our way to Candy's home and from there went to a playground in her neighborhood.
This was the moment when the boys and I encountered a strange meeting on Melrose Road. We had just left Candy's Apartment to walk down the block when this guy yelled at me "Charlie Sheen's Ex!!!! Stop, stop!" the boys and I paused and he came running saying his heart was beating a mile a minute because he though I was Denise Richards with her two children. Hello! for one I look nothing like her at all, for another they have girls if I remember right and NOT 7 year old twin boys!. So I said in a nice way that I am sorry to disappoint him but that it was not us. He then laughed and ran on the middle of the road yelling "Hello everyone!!! We have Denise Richards in our Neighborhood". Needless to say the boys and I picked up speed and distanced ourselves from him :)
Candy met us a short time later at the Melrose Diner which was pure heaven. The food was great and being able to sit outdoors watching people walk by was so relaxing. At times it felt as if we were in a movie, a small neighborhood feel in a large City. We got to meet two of Candy's neighbors as well and I have to say a special 'Thank You' to Joe who helped guide me in a parking space on Melrose Road.
The perfect finish to the day was a visit to the roof top on top of Candy's home and seeing parts of the Lake and the high rises around us. End this with a beautiful Sunset and it was truly the perfect ending to our trip to Chicago.

We ended up with a 3:30 am wake up call the next day and as painful as it was we were all in high spirits because we were heading home to beautiful Colorado. I love that we have the options to have the beauty of home, the mountains and peaceful quiet but also that the boys get a taste and feel of City Life, which I also love and cherish.

We arrived at home at 11 am and it was so good seeing Ron again after a week and then being able to sit out on the back deck for Coffee and Cake and also for Dinner with a glass of wine..

If I have not said so lately I really do love and appreciate my life. Yes, there are always challenges but that is the normal for everyone.

So THANK YOU Miller Family and Candy for making a trip that could be just a pain in regards to traveling and Doctor Visits to a trip that felt like a vacation. I am so lucky to have amazing friends that take time out of their day to make our days special.
Love!

Hugs!

R A C A

Saying Goodbye, Chicago - CMH and Friends ....

Tomorrow the boys and I will have to say our Goodbyes to my Mom and Dad as they are heading home to Germany again. Ron already said his Goodbyes when he left for Flight Training on Sunday and as with each visit it seems to get harder and harder to let them go.

I admit I am one kind of person that loves having my parents around and it was a most wonderful six weeks for us. It started out very sad when right after my parents arrived we lost their precious baby, Trixie. Trixie has been a part of our family since Ron and I got married and we gave them a small white fluffy puppy for a gift. It broke our hearts loosing her!

The boys have always been very close to my parents as well and they have not been happy about their upcoming departure. Yesterday Connor complained that they are only here for such a short time and I explained to him again that we have to share the people we love with the rest of our family. I still have four siblings living in Germany and they have families and children as well that love the attention and company of my parents. To this the boys said that they have them for a much longer time during the year ... so to make up for it Connor and Alexander have talked Oma and Opa into letting them share their bed each night for the last couple of days. I have to say my parents are brave as our dumplings are very restless sleepers. Alexander more so then Connor. I on the other hand enjoyed the extra space it gives me ;)

Since my parents leave late in the afternoon tomorrow and the boys and I are leaving early in the morning on Wednesday for Chicago, we decided to spend the night in Denver and save us the drive back and forth from LG to DEN. We will arrive in Chicago on Wednesday and our Appointment with Dr. Curran will be on Thursday. I am really excited to hear what their feelings are on Connor's progress and our tapering of the Steroids. To imagine that Connor is down to just 1 ml a day of Prednisone!!! I so hope that they will see what we are seeing and that the Blood work results will confirm that we are on the right track. I tell you there are days when I can just taste and feel the hope for Remission :)

Our trip will also give us the joy of catching up with dear friends. If we are lucky we will see the Miller Family, who were one of our roommates at CMH last year. We are also looking forward to meeting up with Candy, a wonderful friend of a friend of mine who lives close to CMH and who has endured and is still feeling the pain from loosing her niece to Leukemia just this past year.

There is one person, truly one family on my mind as well and that is Henry and his parents. Hardly a day goes by when I do not think back of our very first roommates at CMH! then of course there is Hope and her family. Going back to Chicago is always a complete mixture of feelings. The hope for good news for Connor, the hope but also pull at our hearts for the fight both of Connor's roommates are still fighting. The true feeling of pain for the family of Hope, and for Candy. Going to CMH is like nothing I can put in words. Walking up to the 4th floor and seeing the wonderful nurses and the love they radiate, remembering the laughter and tears. Truly, I would not want to trade in what impact it all had on us but I would give the world if I could reverse the loss of Hope and of Hannah. Of course so many more have lost their fight and I am only mentioning those two names because I know a small part of their journey.

We will return for home on Friday morning and catch up with Ron for a couple of days before he has to leave again.

 

I hope you all had a great Mothers Day. Mine was perfect in every way as I had my Mom with me, my Dad, Ron for half of the day and of course my dumplings who seemed to be more excited about Mothers Day then even I was. Completely perfection of course would be my whole extended family, all the way from Alaska to Germany :) one can dream, right? :)

Have a safe week!

Hugs,

R A C A

Not enough hours in one day ....

I know, I know :) it has been a complain many have mentioned before that we just do not get enough hours in one day but it really is true for me lately.... I could use about 4 to 5 hours more and the problem I run into as of late is that I end up in bed by midnight or 1 am. This is a very crazy situation for someone that needs about 12 hours of sleep on average ;)

In my mind I have this perfect laid out plan for how my day should run. When the boys were small I called them our Groundhog Movie Days, where each day was scheduled exactly as the day before in regards to when the boys woke up, ate, played, napped, ate lunch, napped, snack time, played, had dinner, bath-time and back to bed. We truly kept that schedule for about 2 years and the boys did so well on it. They had a happy disposition on a daily basis. Now that we Home school I like to have a rhythm as well. If I could force it I would like for us to get up between 7 and 8 am, have breakfast and be in school by 9 am. School usually lasts between 2 1/2 to 3 hours, so at noon we have lunch followed by nap and quiet time until 3 pm. We then have Coffee and Cake Time followed by free play time (preferable outdoors) for the boys and for me time to clean, wash laundry and catch up with Paperwork until it is time to start Dinner at 5 pm. We always try to eat at 6 pm and then it is bath time and quiet reading time for the boys and us. Bedtime at 8 pm and time for Ron and I to relax and read, watch Netflix or play scrabble. I should then head to bed at 10 pm and all would be perfect :) There are days like this and I love them, unfortunately they are not as frequent as I like.
Here is why I am not getting this schedule as much as I would like to see it lately. For one we are always under pressure to catch up on school since we started two semesters behind, we then deal with weekly Therapy and Doctor visits that interrupt our days as well. So now we are having school six days out of seven and on top of that I added a new focus for myself as in to getting educated about money and investments. It seems it is not as easy to win the lottery as one would hope for especially when you don't buy a ticket. I also would love for my husband to retire but JDM has thrown us a curve ball on that end. So dealing with medical bills has taught me one thing ... not being happy about something does not mean you can't ignore it. I have always taken care of our bills and we have always been able to pay our bills thanks to Ron working but I now want to know how we can be smarter about how to pay off bills and also invest some money into savings. I am not a risk taker and that is one reason why I would never make a good gambler. I like to hold on to what we have but I was also upset to see that you get only about 1% interest for your savings compared to the 5% four years ago. So if you all my dear friends have sound ideas send them my way :)
So now I made it a point to read books on money before bedtime and that usually gets me all wound up. To relax I then turn to Netflix and watch my favorite shows of Dexter or Prison Break. Now those I found are not made for sweet dreams either. While they might be very fascinating and addictive they also  cause me to have the strangest dreams when I do go to sleep.

All of this is part of another point ... my Day is so stretched thin that I do not have time for anything to go wrong or for any interruptions in any form that mess it all up. So, right now I am not to happy about CenturyLink who had promised us we would save $20 if we switched our Internet Satellite over to DSL. Same speed and savings, sounded good but why oh why mess with something that works? It turns out we tried to switch today and after 3 hours of it NOT working they then told us that we needed an additional Router. THANK YOU husband of mine for unhooking CenturyLink and hooking up SkyBeam again. For once I would love for something to work out as it was promised. Why I am still surprised when it doesn't is beyond me ...
I also are very bad about phone calls. I try not to answer the phone when the boys and I are in school, we are eating or we are observing quiet time. That leaves me with one hour I found out of when I can make or take phone calls - 4 to 5 pm. Now you might realize why I cherish e-mail, Texting and FB :)

I am truly craving to have one week or several weeks of 'Groundhog Day's'. If you do not hear from me then know it is due to me trying to make this work or being passed out asleep somewhere while trying to catch up on all the hours of sleep I am missing out of lately.

Hugs :) and happy to know that at least our dumplings are getting sleep :)

R A C A