Getting in the swing of things :)

So we are now into our second week of school with life that comes with it and so far so good!

I am happy to report that Connor and Alexander LOVE school, adore Mrs. Struble and even got so motivated from German School that Connor wrote his first letter in German, which will be mailed to his Oma tomorrow :)
I was also happy to hear to be told the boys acted very mature in school and had very good manners! and NOT even one trip yet to talk to the Principle ... let's keep our fingers grossed that there will be no more decorating the boys bathroom with Soap as Alexander seemed called to do two years ago :)

I am also happy that we seem to find a great rhythm to get some school here at home done as well, during Cottage School. We decided it might be beneficial to actually get up when most people do, so I have been declined to wake up around 6 to 6:30 for a workout and some quiet Coffee time before turning on the Intercom Speakers throughout the house with Music. Yesterday we had John Denver, in honor of living in CO, and today we started out with the Beatles ;) The boys love it and actually come bouncing up the stairs with smiley faces. This way we actually make it into the School Room by around 8:30 (shocking, I know!).

Of course, JDM is still a part of us and I decided to move Connor's Chemo Shot from Tuesdays to Wednesday as he sometimes does not to well at all the day after and I did not want his second Cottage School Day to be impacted by this. So we are now on a Wednesday schedule which of course means when he comes home Wednesdays he still has to face 'Shot Day'. We however have found a way to take the edge of - THANKS to Kim Miller who told us a most wonderful secret. We bought a big bag of War Heads Sour Bonbon's and I tell Connor to put one in his mouth about 2 to 3 seconds before I inject him and VOLA ... he does not feel the needle go in! Now he does gets a fair amount of Merhrotrexate so it takes time to inject and he does feel it towards the end but still it has made it so much easier.

Now there is another factor we knew we would have to face and that was the going back to school and possibly getting sick. Well, as of tonight Connor complained about a sore throat and he is stuffy with a plucked up nose. We are however braced for this and we are happy to say we will have 5 days to ride this out before faced with going to school again. This Saturday will be no German School do to the Labor Holiday so this is actually a good thing :)

We are also spreading out the IVIG Infusions again to six weeks and we are now in week five. This puts us in the dilemma of needing Connor's Port Flushed every four weeks so it won't stop working. We now have to go to C-Springs tomorrow to the Center of Cancer and Blood Disorders to have it flushed, since we are already at week five and then come back next week for the Infusion. Never did I say our life is boring ...

Hope all our friends with kids had a great back to school experience and that the transition from summer to school went smooth.

Hugs,

R A C A

Schulhaus Denver/Colorado Springs & Tour de ?

This was an amazing and VERY busy week for the Smith Family and I have to say I loved every minute of it.

On Monday I was able to make it all the way back up the Manitou Incline in 1 hour and 8 min and I was pretty happy about this as the last two attempts the week prior I only made it to the half way point before my body was ready to quite. I had started a cleansing Diet that cut out all Gluten, Sugar, Meats other then Fish and Organic Chicken and Night Shaded Plants as in Tomatoes, Peppers, Potatoes & Egg Plant, and of course no Alcohol. I have to say it sapped me of my energy in a big way. I wish I could say I lasted for the whole four weeks I was suppose to stay on but in all honesty I lasted for about a week. The final straw came when we traveled to Denver to see a Friday Night's Rockies Game this past weekend... how can I be at a Baseball game and NOT take a bite of a Hot Dog, Nachos or Cracker Jacks? If that was not temptations enough I was then faced with one of my favorite Menus after the game in the form of a place called The Cheesecake Factory? ;) Trust me my willpower had no match at all .... so when it was time to call for a stop I figured I might go down in a big way and added to my Giradelli Chocolate Cheesecake a Long Island Ice Tea ... Figures of course that after that binge eating I was able to hike the whole Incline again. I think my body is telling me that it is made different then other humans out there and it needs sugar and Chocolate as a fuel ... I should have known ... ;) Kidding aside, I truly do admire all my friends that are able to pull this off and also look amazing, are in great shape and have endurance!!!

Tuesday was very exciting as it market the boys first time to return to Cottage School with Mrs. Struble, in almost two years!!! Connor and Alexander love their three hours, twice weekly, at Gateway and it is a most wonderful addition to hour Home school Program. They talked all about Beetles and even got to touch them, playing the drums in Music Class and getting Awards in PE that it made me smile and happy to no end. Of course they think that 'normal' school is like this five days a week and think they have it harder for being Home schooled as I try to bug them with something they do not like, as in ... Writing and Reading! How could I come up with something horrid like this? ;) well, someone has to do the dirty work so it might as well be me ;)
Thursday of course we had a full day of catching up with School at home so you can imagine how tired we all were after spending almost 6 hours in the Class Room ...
Yesterday, Friday, was actually very calm here at home and we sailed through school in less then three hours. So a lot of free out doors play time for all of us. We even had a Bike Race to the back of our Property and back to the House. I was able to go to the Incline again in the morning and choose to just go half way, not so much because of how I felt but to give my knee a break which has been causing a bit of pain lately but is expected when ones workout includes climbing stairs for one mile and then running down the trail for 3 or 4 miles. Motrin does become your friend .... I also realized with Fall approaching I need to start my Incline later as it was very, very dark when I arrived at 4:45 am and the sunset was trying to appear after I was about half way down the trail. Makes for Interesting Climbing when one can not see very well ... plus I admit by not seeing to many fellow climbers I was a bit psyched out of the through I would stumble over a bear or Mountain Lion ...

Today, Saturday, then market another very exciting day as our dumplings started their first day at the Schulhaus Denver/Colorado Springs for German School. This is of course very exciting for me as it will give the boys a look into parts of their Mom's Culture as well as Traditions and learning about Holidays as well. The best part is they will learn to read and write in German as well ... they understand German very well but the speaking part is still a challenge at times and it was so fun to see them in their class room talking in German. Now there was a part were I cringed when it was our dumplings turn to introduce themselves and Connor said that all he likes for his favorite food was 'Ueberaschungs Eier' (Surprise Chocolate Eggs) and that his only 'Hobby' was Playing Video Games ... Video Games??? THEY HAVE NOT PLAYED IN ALMOST A YEAR!!! - were was his mentioning of Bike Riding, playing out doors, LEGO, Playmobil or Coloring? ... Alexander of course followed suit and also mentioned just Video Games and did throw in that he loves Harry Potter but when asked if he liked Reading he said a loud and definite 'NO'. I can only imagine what they thought of Ron and my parenting style :)
All of this is hugely possible Thanks to my husband who has been very supportive since I first approached this thought of them going to Saturday School. Ron must have taken over 100 pictures today and he was in the Class Room with the boys for the whole three hours while I got to sneak away to shop at the German Store and also chit chat with other Parents at the school. The boys loved having him stay with them and you should have seen their beaming faces when on the drive home Ron told them how proud he was of them and their manners and behavior in Class.

Tomorrow we have promised ourselves a well deserved day off and I voted to have some reading time, nap time and watching movies to which my three men said they will just vote to watch movies all day ;) Either way it will be heavenly :)

Wishing all of you a great Sunday and special Hugs from us to the Hill Family who Welcomed Baby Hadley on Aug 25 to their Family. She is absolutely beautiful and I am grateful to Facebook for being able to anticipate her arrival thanks to all the updates by Sonya and Heidi :)

Hugs,

R A C A

1/2 mile Kid's Fun Run - 5K - Zip Line :)

Now this post is a real punch and fight back at JDM. I said it before that we as a Family would never give in to JDM and sit back and just feel sorry for ourselves. It is one thing to say this as the Parent but it is another when you get to look in your child or children's eyes and know they are just as determined to fight a disease with no Cure.

This weekend Connor ran his first race, one year after setting foot out of his wheelchair, which dominated his life for the eight months since he was diagnosed in January 2010. The Doctors did their part, the Medicine, the Therapies as well BUT his Spirit is what got him back on his feet as well.
We entered our names last week to be part of the 22nd Annual Woodland Park Mayor's Cup, Connor and Alexander for the 1/2 mile Kid's Fun Run and I for the 5K run. Neither of us had done a run before, granted I hike the Incline and run down Barr Trail but as Ron pointed out I never ran more then one mile on a street. The boys play around their playground but never ran a half a mile distance before.
It all was an amazing success. Alexander came in 6th and Connor was in the third part of the field. We told since last week that we are adopting our precious friend Allison Simpson's Mantra of being a Completer and not a Competer. It was all about making the finish, no matter what place we took. Connor of course did say that he was happy he finished the race but noticed that he was the last one of the 'older' kids to finish and that all the kids behind him were 'little' kids. Ron and I never noticed where or who was in front or behind because all we saw was Connor 'RUNNING'! He started walking towards the end and when Ron got next to him he ran the last 20 meter or so to the finish along side his Dad. How proud can I tell you we are???? There are not enough words!!!!!! I just wish I had the camera to take the picture of him crossing the line with Ron.
So I am still not sure what made me sign up for a 5K but I admit I was motivated to have a goal, especially when we tell Connor all the time that you never move forward if you don't try and make an effort. It would be a lie if I told you that the run was easy for me! The start went really well and I think the first mile was actually not bad at all. It went slightly downhill and through a shaded neighborhood, BUT oh my did I start feeling the pain when we turned on Kelly Rd and all I see was this looooonnnnng and steady uphill. To make matters worse I turned from Kelly to Rampart to be faced with the same view. My poor friend Caroline and her two boys barely got a smile or wave out of me when I ran/crawled passed them. They came out to support and cheer on Caroline's Husband Jeff and I tell you they were very lucky that I did not run to them and take a chair and not move again :) I do admit I was extremely motivated to see Allison and her 7 year old son Logan in front of me. It was not easy trying to stay with them and I tried to see if one can draft running as well as one can driving in a car. I don't think it worked as well as I hoped but it was worth a try. I did finish the race as I had no choice since my son's completed their run. I crossed the line at 35 min and 21 sec., being cheered on by Connor and Alexander who ran the last 20 meters along side of me! Ron was as always an amazing support and Thanks to him we have pictures to prove we did it! Allison and Logan crossed the line almost one minute ahead of me and Logan got first place in his age group!!!! Way to go!!!

So then you would think we would go home and pass out but not this family! We actually got home and got busy putting up the Zip Line Ron got the boys!!! Leave it up to my husband to figure out how we can put it up ourselves and he did an amazing job! One more wonderful addition to our Enchanted Mountain and 22 Acre Woods ;)

Tonight I do have to end with another wish however. One of our JDM Families Child is in the ER right now and the family is worried that their precious and beautiful daughter might have Aseptic Meningitis. There children are also Identical Twins and they were on their way to Washington D.C to see Dr. Rider at NIH for the Twin Research Studies. Their sweet girl has an especially hard and painful battle with JDM and to be faced with this now is more then heartbreaking. Please think of them and if you pray, pray for them. Their sweet girl will have a Spinal tap first thing in the morning.

Hugs and Thanks to all of you who have shown nothing but support to us.

Love,

R A C A

Ron, my Husband and Best Friend!!!

Another Post long due but so important to mention! Everything I do and everything I love about my life revolves around the comfort of knowing that I have the support and advice of my husband who truly is in every way and form also my best friend.

My husband had to face and deal with a pain in his Right Shoulder now for 5 years. It is a pain that has been constant and has stopped him from doing many things he loved to do. He just had his second surgery on his shoulder but it all started August 25, 2006 when he was mugged in Santiago, Chile. The assault was pretty violent and it caused for one finger to be twisted and broken and also his shoulder being damaged to a point that has caused him pain from then to now. Those of you reading this that are the parents of a child with JDM know how paralyzing it can be to see someone you love in constant pain and the frustration that comes with the fact that just because your child does not look sick everyone assumes all is well. From the outside Ron looks healthy but the pain never goes away.....

Now throughout all of this he always put us and his family first by supporting us not just financially, and we all know now how important a good and stable job is when you have a child with JDM and also face an Economy that is scary at it's best at the same time. No, he also supports and helps me here at home in many different ways! Right now Ron is going to be at home for a while recovering from this latest surgery and trying to focused on Therapy and getting better (which has been a challenge due to his reaction now certain medications, which we are still trying to figure out - it caused him to be sick, nauseous, light headed and to hallucinate). Having him home and his willingness to support me on my newest adventure of trying to get myself in Shape and learning a healthier Eating habit has been nothing less then amazing. The only reason I am able to go on the Incline is due to him being home watching the boys. He also shows me his love by planning a surprise Massage Therapy as a reward and then buying me the best Workout Shoes (Trail Running Shoes) there are, plus two VERY pricey Running Bras ;) yes, trust me they are important! We are also adding a Treadmill to our Workout Room as I am not a big fan of the Elliptical we already have.

I said it earlier in a previous post how much better I feel now that I started taking care of my body and how much more energy I have to take care of our home. I could not have started this or keep going this direction if I had not the help and support from my husband.

So THANK YOU!!! DANKE!!! Ron, for always, always being there for me and the boys and never for looking for the easy way but always planning ahead. One thing that is very hard to do for a person like me that lives day by day.

Love You,

Anke

Home for Sale ... a sad post but worth mentioning ....!!!

This post today is a very sad post for me personally but one that is impacting our Family Life, so worth being a part of our Blog.....

I mentioned in my post two days ago that our dear and so loved friends, Shelly & Clare, plus their son Alexander, are moving back to Lake Tahoe, CA. As much as I do not want them to move for pure selfish reasons I do want their move to be as smooth as possible so I figured I will post about their 'Home for Sale' here as well, since I already mentioned it on FB.

I could say I am influenced in how I feel about their home because of our relationship but that would be a lie. The first time I came to see their home was one of complete awe! To call this just a House would not make it justice as their place has so much Style, Character and pure Beauty. It is very homey and the 35 acres that come with it are truly prime acreage. It is all gentle rolling hills with Pine and Aspens and the view out the front of the house shows you Pikes Peak in it's full glory. I remember my first dinner when I was seated looking straight out the picture window and all I saw was Pikes Peak with the sun setting on it and it was hard to focus on my food :)

It is a Custom Home with 4100+ sq ft or more, plus 35 acres. There are two Bedrooms upstairs and downstairs with the walkout basement it has a Game Room, Family Room, two more Bed Rooms, Utility and laundry plus a HUGE Office and a Vault. It will be listed for $780,000.00. I personally think this is low for what the Home is offering. Personally I think this home will go fast but I am posting here because once again my selfish side comes through and I would love to see this home go to someone I know and like. After all how else will I get to go back and enjoy it as well ;) Kidding aside, how could I not mention this when it is hands down one of the most beautiful properties I have ever seen...

So if you are in the market for a new home or are considering moving to Colorado, then I would not pass on taking a look at it. Oh, and the name of this 'Ranch' is "Another Day in Paradise".

Hugs,

R A C A

Summer Fun and Family Life at it's best .....

This summer I was really taking a break from writing due to having found a new Therapy outlet and I can tell you it does not come very easy right now to sit down and to take a break to put some words on paper but I know I owe some updates to my family so here it goes :)

This summer has been flying by at such a fast speed and it has been wonderful in so many ways. We took some trips as a family and the gypsy in me has not been this happy since JDM came along. I love being on the move but I also take great pleasure being home and spending time with my three favorite men in the world.

JDM did throw us one speed bump, a scary and huge reminder that it is still with us even when it makes it easy to forget at times because Connor has been so active for the last month. Most of the days the only reminder there is are the medications he has to take, but even this is such a routine now. Even traveling with all the Medications has become second nature. No more worries about keeping them cool or dealing with TSA as we found both to not be an issue at all.
The one speed bump came during the week of August the 25th. Two weeks prior the boys entered a Basketball Camp here in Lake George and the week prior we went on a Colorado trip to Pagosa Springs, Durango, Silverton & Ouray and all went extremely well. The boys got a lot of pool time which they loved. We came back and the following week Connor started complaining about his Bike not 'working right'. We watched him fall off it more frequent and it seemed to Ron and I as if his balance was off. Alexander took several turns on the bike but had no issues at all (the beauty and the curse we found in dealing with JDM and having Identical Twins ... you always have the comparison factor, in a good and bad way). The next couple days I watched Connor more and more walking on his tip toes again and complaining about pain in his legs. He also had this strange occurrence of his leg boggling under him while walking. Now here is the great part about the stage we are in. I was due to send an e-mail to Dr. Soep about an update on Connor and also about us discussing the tapering of Steroids and stretching out the IVIG. I e-mailed our concerns on Tuesday morning around 10 am and by noon I had a phone call from her! I tell you I will never be able to express the gratitude we have in knowing we have the greatest, best, most knowledgeable, reliable and most compassion doctors on our team. Nothing will beat this feeling no matter how angry I can get at JDM and the hand Connor was dealt. If Connor has any issues at all I can still go to bed and know we are in good hands and everything in our power is being done! So to get back to the phone call, Dr. Soep was very concern that he might be starting a Flare and wanted him in for Blood Labs as soon as possible. She was also concern that she would be leaving for her vacation and that she wanted to know what was going on before she left. So Connor, Alexander and I headed to TCH on Thursday for his Blood test and also to push the IVIG and Methrotrexate in two weeks prior then scheduled. The decision we made was due to there fact that it could not hurt him as he used to be on the 4 weeks schedule just a couple months earlier. If something was brewing we could give it a kick in the behind ;) with the IVIG. At least this was our hope. We also had the pleasure to finally meet Michelle, Dr. Soep's Nurse who has been our Angel through the very beginning of our journey with TCH. We had never met in person but had talked so many many times at the phone. She has been my rock when we first brought Connor home and all the medical schedules and infusions at home seemed so scary and over whelming. What a patient and wonderful soul she is!
Now here was the interesting part. Connor blood test came back normal or better said, not any different then it was last month. All looked good and he showed great strength when Michelle tested him. Now our question is if Connor had been so active this last two weeks prior, that maybe what he was dealing with was normal soreness in his muscles from just 'exercising' to much? I mean, here he was running, swimming and riding his bike. He might have gotten scared because the only thing he can remember was the first time his muscles hurt let him to being in a wheel chair? so maybe he could not separate the feeling of it? I don't know!

 Now the day after the Infusion we left for TX to have a very busy weekend that included a very fun Baby Shower for Jessica, a fun afternoon Bowling for the kids with Dylan, Ryan, David, Aaron, Charlie & Bruce for a boys day out, while we Girls, Heidi, Sonya and Ana had a most wonderful and fun Night out at Sushi Sam. The next day we started out with a yummy Brunch and Play Date at the Tossell 'Hotel' and it was so wonderful for me to see all six kids back together, as David said the original Six Pack ;) which makes Heidi, Sonya and I the original Three Musketeers :) We then went to a Gymnastics Kids Birthday Party in the afternoon for Aidan's 8th Birthday and then back on the Plane right after the party for HOME, Ron and the precious cool Temperatures of Colorado. Connor did have a tummy ache the first day we arrived in TX and then a bad headache the following day but this could have been due to the IVIG or being dehydrated since the TX head of 100 plus temps really got to all of us. I can tell you now a week later he is doing very well and as I am typing this he is running outside and already rode his Bike today and played Basketball .....

As to my husband, his recovery is going slow but steadily as he is getting more movements. He has been in a lot of pain and discomfort but he is making progress. His range of motion is getting better and his schedule is busy with Therapies twice weekly and Doctor visits. Having him home has been a very special treat to all of us and we can say that there is no worry when the time comes and he retires  ... which he is still aiming at 65. We do know we get along very well :) and I guess we will not need the counseling sessions AA recommends for Flight Crews that retire reenter 'normal' life :) I guess it turns out the four of us make a great Flight Crew here at home :)

My update from the last time I wrote has been the accomplishment of starting to climb the Manitou Incline at first once a week and now twice a week. For anyone that knows me knows I had a hard time my whole life to find an exercise routine that kept me entertained and motivated, and I am so thrilled and proud of myself that at age 40 I think I found my calling. I love the hike up the Incline and I even manage now to run down the 3 to 4 mile trail back to the car. Now all of this was possible to the patience of Allison Simpson, who truly has the patience of an Angel for coaching me up the Incline. This is a girl who has been running the Pikes Peak Marathon now for 6 years in a row!!! and for her to go slow down and motivate me has been such a gift. Now I had my sixth ascend this past Friday and my mission is to go twice a week from here on out. I had the pleasure of going with Jamie once as well and three times with Jeff. I know I am lucky to have hiking partners but thanks to my husband and my little bottle of Pepper Spray I will be attempting this by myself as well when friends are unable to go. I am fascinated that it took me this long and so many years for it to 'click' and be conscious about being healthier, but I am happy it happened now. I do think I am getting in better shape then I was at age 20 and that does not mean body shape but my endurance and energy as well. I love it and it is a huge part of why I am not writing as much as well, as my outlet and Therapy had been the Blog in the past and now it is the conversations I have with myself while I drag myself 1 mile straight up the Incline ;) So, if you are looking for a motivation to start then please look at me ... if I can start at zero at age 40 then so can you! trust me the payoff is wonderful and addictive. No, I most likely will never run a Marathon but I did sign up for my first 5K for the 13th of August ;)

We also added a new Family Member to our Clan. We are now a Family with a Cat :) We added little Miss Bella to our family last Sunday and it has been a lot of fun. I admit I did not know what it would be like having a cat in the home but I am sold! She is so sweet and smart. Very independent but goodness, she never had one accident and has been Littler Box trained from day one at nine weeks old. Thinking how long it takes to train a puppy I am truly in awe. She has taken to Ron in many ways and will be in his lab or on top of his pillow most of the time. The boys are in love with having a pet indoors and so are we.

On a sad note for us but a happy note to our friends Shelly, Claire and Alexander, we found out this week that they will be leaving Colorado to move back home to Lake Tahoe. Shelly got a job in Lake Tahoe and will start in just a couple of weeks. Claire and Alexander will stay behind until their home sells and then it will be there turn to follow Shelly. I know they have not been to happy here and were craving their return to CA but it will be a huge loss for us. They have been wonderful friend's and family. My comfort has to be that they are moving to one of the most beautiful places in the USA and that now I have a new destination to add to my places to see :) I always said if Friends and Family have to leave us that at least they should pick a place this Gypsy here loves to see :) So I still have San Fran, NYC and the East Coast on places I love to visit so if anyone of you even considers moving from here (which you should NOT) then maybe look at this list first - haha.

Anyway, Wishing them nothing but the BEST, and Thank You Shelly & Claire for making us feel at Home when we first came to LG and for being there every step when Connor got sick!!! You always 'understood' me and I knew I could always be myself around you ... good or bad!!! You might be moving but you will always be a part of our life!

Hugs,

R A C A