A beautiful Day in the Rocky Mountains

Yesterday, Friday the 30th of July, was one of those magical beautiful days in our Home.

It started out with me leaving the house at 7:40 AM to head to the Farmers Market in Woodland Park and spending about one hour of pure bliss walking around and shopping at my favorite Market Stands. I started out with Les Bistro, my loved French Bakery who sells a Bread that just tastes heavenly. It is called Normandy and the sourdough taste is just so intense and yummy. Then I bought one French Baguette and for my Breakfast a fresh baked and still warm Chocolate Croissant. Gosh how I love French Breads, Wines and Cheeses! I think if foods would rule the world then we would or should all get along really well - HaHa.

I bought the boys some warm and fresh popped Kettle Corn and finished up with the Palisades Stand who had fresh picked Tomatoes, Peaches and Corn. They are located in Grant Junction, CO, and the tomatoes where so juicy and fresh. They let you sample before you buy but I don't even sample anymore because they always deliver what they promise so no worry when shopping from them :)

When I got home I prepared Connor for his Methrotrexate Shot and put the Lidocaine Cream on his tummy. We set the timer for 70 minutes and he went off to play while I figured I try and work out a bit. The boys came to join me and we got at least 35 minutes in before heading out for some yard work pulling weeds and picking up rocks. Ron got to work on his Backhoe and repair our driveway again who was getting a bit damaged from those heavy rains we had lately. Connor came running to me with about 2 minutes to spare to tell me it was time for his Methrotrexate Shot. He is a better time keeper then I am when it comes to his medication. I still set a clock as a reminder and he will beat the clock about 80% of the time! The Injection went very well again and I feel like this is becoming the easiest part of his whole medical regiment. Crazy....

When we all finished outside, Ron had the wonderful idea to head out for a Picnic, so we loaded up the 4-Wheelers and off we went. It was so much fun and very relaxing!

We ended the afternoon after we got home with a nap for Connor and I and then finished the day with a wonderful dinner thanks to my trip to the Farmers Market in the morning.

Today the boys and I are taking a day off while my husband is back to work heading to Anchorage, Alaska again and were he hopefully is able to spend some time with Niki and Harlow.

Wishing all of you a great weekend ....

Hugs!

R A C A

Hippo Therapy # 2 :)

Hippo Therapy Session # 2 was on our program for today but before we left the house for our 1 hour and 45 min drive we had some free time this morning.

As it has become a habit for our boys in the morning they leave for the outdoors as soon as we are done with Breakfast.

One of the obstacles they have to overcome is the part of letting Tasha and Apple out since they are only allowed to play outside if both dogs are with them. Well, Tasha and Apple are so excited to see the boys each morning that they try to pretty much run over them. Especially Apple is over exuberant and tries to jump up. Both of our puppies out weigh the boys now by more then 20 lbs and it truly is never an issue throughout the day and just the first meeting in the morning.

This morning Connor went out by himself and when he stepped out he looked for Apple and Tasha but they were nowhere in sight (at first). I watched him through the kitchen window and he made a dash of about 50 meters to his playhouse where he is safe :) About halfway there I saw Tasha and Apple moving towards Connor coming around the side of the house and the faster Connor ran the faster the girls got. So I in return ran to the front door to call them back and by the time I got there Connor was on the first step up to the house when Apple and Tasha reached him. I tell you that I have not seen Connor ran and move this fast in seven months and to consider he was not walking three months ago! We were both laughing at what a great sprint he gave and the only ones upset that they did not get to greet Connor was Apple and Tasha :)

I went to workout after this and Connor came to join me for the end of my workout which entails Yoga. There are three poses he loves to do and I have to say it is fun for me to have a workout buddy :) Alexander usually joins us, too, but he did an experiment with Ron about what life would be like being Blind. Yesterday our boys did a pretend sword fight with sticks and Connor almost poked Alexander in the eye. So each of our dumplings got to spend some time today without sight.

Each got about 15 minutes and they thought it was fun, so maybe we need to do this for a longer time period ... not sure how to get the message through any better....

Now to the Hippo Therapy for today. It was as wonderful as last time if not better, if that is possible. Connor was so happy to see they were getting 'Blinker' ready for him when we arrived. He is so falling in love with this horse and it seems the horse likes him as much because they were cuddling so well before it was time to start. Today they added the outdoors to Connor's program and he learned how to 'steer' his horse plus how to ride backwards on him while doing the same exercises. What was wonderful to see as well is that each time he was asked to do sit-ups he would add one. First time Miss Amanda told Connor to do five sit-ups and he finished with six so then she told him 10 minutes later to do ten sit-ups and he did eleven :) He had some more playtime throwing a ball back and forth with another boy and when the six minute warning came about the end of his session he asked Amanda why it was so short today. She said it was the same timing as last time but if you have fun the time goes by very fast :)

So I also just thought about something that should have come to me the first time I heard the word 'Hippo Therapy'. Remember I told you that the word Hippo comes from the Greek word of Horse? Well, how do we Germans say to a Hippopotamus? We call it a 'Nilpferd' which translates into 'Nile Horse'. So of course this all makes more sense to me now :) HaHa

We ended up our afternoon with meeting Ron and Alexander for Coffee and Cake at Panera Bread in C-Springs. They had spend the afternoon shopping together and it was a treat to have one on one time for each of us. On the drive home Connor wanted to drive with Ron so Alexander went with me. If you have twins or multiples you know it is not an easy thing to get some alone time with one of your kids but it is wonderful and worth trying for :)

About 30 minutes after we got home and the boys had been told to sit in their beds read some books to quiet down a bit from today's activities, Connor fell deep asleep. We did not realize this so Ron by accident woke him up when checking on them....It was a good thing however because it would not go well tonight if he fell asleep at 6 PM without dinner :) our always hungry son would keep us awake at night I am sure :)

As always I hope your day went well and please click on the link to your upper right on this page to Vote for today if you have not done so yet.

Hugs,

R A C A

A Day at Home, receiving a gift of love and a great Ending :)

This should be a shorter Blog Entry then my usual ramblings :)

Today was a good Day that we got to spend at Home with just one quick trip to the Post Office to get our mail.

There was a small package in the mail from one of my best friends Mom who send a very precious and meaningful gift to Connor and Alexander. You know of the fascination Connor and Alexander have with Star Wars so you can imagine their eyes when we opened the package and there were two gorgeous Necklaces, one with R2D2 and one with C3PO. There was also a Darth Vader Pendant as well. This gift brought once again tears to my eyes because it shows once again it is not the value of money that this gift has but the meaning it has. Those two necklaces used to belong to Brian Scott, a Son and a Brother who as a boy loved Star Wars and then as a young man joined the Army to serve his country. He was killed in Action during Dessert Storm and this family lost so much that day. It is a tremendous honor to us as a family and our boys to be entrusted with those precious Necklaces because there is so much meaning to them and also so many memories connected as well.... So THANK YOU to the lovely Scott Family who has adopted me when I came to the USA 17 years ago. You took care of me then and you are still treating me as family which means so much knowing that it is not always easy to love crazy me :)

We had a wonderful finish to the Day because after being in Santiago, Chile for over 42 hours my husband and Connor and Alexanders Papa came home. He has been so busy flying that we cherish everyday we get to have him with us. This time he will be home for 2 days before leaving for 5 days. This kind of schedule is not necessarily normal since this is a bit of a catch up from the days he had off earlier this month when we went to Steamboat Springs for a break.

Hope your Day went well and please keep Voting for CureJM for us. If I don't say enough how much I appreciate it then I am sorry! I know I have been bothering you all month and I will have to bother you more the coming month since it seems we will be moving on to August as being in the top 20 but not the top 2 spots.

http://www.refresheverything.com/makejmamemory

Thank You!

Hugs!

R A C A

Therapy(s), Neurologist Check-Up, Movie and Babies ..

Another almost normal busy day for us....

Thanks to JDM we have hardly any boring day's anymore. We are either on the go for Therapy, Doctor Visits, Infusion Trips to the Hospital OR we get lucky and have some days at home but they usually mean In-Home Infusion Days, cleaning the house or catching up with Paper Work and Bills.

I am not complaining at all when I write this because for one I am lucky I have a wonderful husband who helps out so much on top of working so hard to take care of us but also treats us to some wonderful and amazing trips when we can steal away for a couple of days here and there and the next statement I make is the most important one of all: We can not change what happened in regards to Connor getting JDM and if we were not this busy then the alternative could very well have been us loosing Connor and this is one thought I don't and can't think about. So I am happy to be on the go all the time if it means we are still the lucky ones to have our child. Does this mean I am not upset or angry that Connor was dealt this card? Heck NO and I will never be grateful to JDM no matter how many times I could say it brought out the worst and best in us and that we grew in so many ways. I rather be still as ignorant as I was before but since I can't make this choice this will have to do ....

We started our day at 6:30 AM and left the house at 7:30 AM for a 9 AM Speech Therapy Appointment. Now I am a lot of things but I am N E V E R late, so you should have seem my face when we got to the Center at 8:39 AM and I was told that Connor's Appointment was at 8:15 AM. I looked over and over at my Calendar and it said 9 AM. So Amanda said she would take Connor for 15 to 20 minutes until her next kid showed up. I was just dumbfounded and could not make sense of it until Connor's Speech Therapist, Kristen, showed up at 9 AM to take Connor. I looked at her and then it clicked that the clinic had scheduled Connor for OT/PT at 8:15 AM and Speech at 9 AM. So I was on-time for Speech but did not have a notice that we were also starting up PT/OT on Tuesdays as well as the Hippo Therapy on Thursdays.

Therapy went well and we then found us at 10 AM with a 5 hour break until our Appointments with Dr. Stephen Smith for Connors Neurology Check-Up.

When Connor has Speech Therapy there are several Toys in the room that Kristen has for him to play with or to occupy the boys when she needs to talk to me. There are several choices from building blocks, to a Marple Game and Train Tracks but the one my boys started fighting over was a bag with a Baby Doll and clothing, Diapers and Bottles. They were so attached the last time that I thought if Therapy goes well and they are still fascinated with the Baby this time around I would think about getting them each a Baby. You know by now that I am not always the most traditional and I figure if you look around family life in today's society then men are very involved in raising babies and kids so why should they not learn or be drawn to taking care of a baby?

So after we left we made a stop at Target and now my boys are each the Parents of Baby Girls. Connor's Daughter is named 'Lala' and Alexander named his Daughter 'Katie'. It wasn't even to pricey for just $8.99 a Doll :)

After this we went to see what movies were playing this early in the day and lucky us there were two showings at 10:45 AM. One was 'Inspicable Me' and the other was 'The Sorcerer Apprentice'. We choose the second one since the boys are all for Wizards and Magic plus I was rather drawn today to watch a more Adult Movie then a Cartoon. I have to say the three of us liked it and according to the boys it was 'the best movie ever'. Now this statement will last until the next movie they see :)

Dr. Smith's Appointment went well and here are the new physical measurements about our Identical Boys. Connor weight in at 47.5 lbs, Alexander at 44 lbs. Connor was 3'10" tall and Alexander 3'11.5" tall. It still upsets me in some wicked way that they are so different now. I know all my twin mommy friends who do not have identical twins might laugh at me and in the grant picture of things this should not matter at all but for 5 years my boys have weight the same, had the same height, wore the same shoe and clothing sizes and just looked almost like a mirror of each other and now I look at Alexander and think that this is what Connor should look like. It just makes me sad on an unexplainable level. Makes no sense I know but it does.

We are Home now and the boys had a nice evening playing with their new babies while going to battle in their Knight Uniforms. I had to tell them that it would look better if they laid the babies down before wielding swords but hey they are still learning :)

It is now 8:30 PM and the boys went to sleep within 20 minutes of laying down. A long and exhausting day for all of us....

Hope You Day went well.

Hugs,

R A C A

Calm Days :)

We had a very quiet weekend and loved the 'one' day that Ron was Home between his trips. He is flying just about non-stop the end of this month and we look forward to a quieter month in August ... at least we hope it will be! Of course we are also booking up with visitors for the month of August which will be a fun time. One week with friends from Texas and three weeks with my sister and her husband from Germany :)

Today I took on a project that I had figured was far in the distance but 'Thanks' to Connor's great progress I went upstairs to our Loft Office/Schoolroom and got it back into order for the 2010/2011 school year. I had not used that room in over seven months and it had gotten the look of a storage place. The reason of course that had me transfer the boys school items to down stairs was due to Connor not being able to walk stairs. Well, he now is back to going up and down our three levels so why not be optimistic and hope this will hold on :)

We also said goodbye to Hexe/Lexi again who we babysat for 10 days while her new Parents went on a vacation to California. It was fun having her back but it was also a challenge since it is easier to coordinate Tasha and Apple when we are gone all day for Therapy and Doctor Appointments then it was with her. Of course it is a huge comfort that she lives just down the road and that we get to see her frequently :) So if I have not said it in a long time: THANK YOU Shelly, Clare and Alexander for taking her in and falling in love with her!!!

So and tomorrow we are once again booked all day with Therapy (Speech) in the morning and a Doctors Appointment (Neurologist) in the afternoon. As it is a decent drive for us to C-Springs we will stay in town for the day and I just have to come up with a plan as what to do for the five hours in between. I really need to get better at scheduling things - HaHa

Oh, there are some news from this last weekend. If you have not been to our place then you most likely don't know that we are bordered by 20 acres of National Forest. We have a little road that leads from one end of our property to the other but is on National Forest land for most of it. Well, there is a cabin that someone on the other side is renting and they must have followed the road and went on our property a while back, and this the guy told my husband when they met, that he could not get close to our house because Apple and Tasha would not let him. He said the dogs were so intimidating barking and growling that he retreated. This is a good thing because Ron told me that after he met this guy he did not have a good feeling about him. Those neighbors sport is also skeet shooting or something like this so they were at it all weekend and since this is close to us I am not all that happy.

Ron will be back on Wednesday and we are so glad that we will have him home for two days before he will be gone for almost a week again.

Wishing all of you a good week.

Hugs,

R A C A

Visit from Rev. & Mrs. Morgan ...

This was Day # 2 this week with nothing on the calendar in regards to Therapy or Infusion Days but never less I had a full day planned of cleaning our House and since this is such a joy of mine - NOT - I was happy to catch a break in between cleaning by a visit from Rev. Morgan and his beautiful Wife Mrs. Morgan. Not only did they give us the gift of their company they also came bearing a delicious lunch of Scalloped Potatoes with Ham.

Connor and Alexander were happy to show them the Video we made of the Musical and also look at pictures I took during the week of camp.

It is so wonderful to have a connection with someone that is around my parents age and who I can talk to and get a feedback in regards to where my mind is wandering to. For those of you that know Rev. Morgan you also know that he is a great listener. I am not sure if he always agrees to what I throw at him but if he doesn't then he is doing a good job covering it up :)

So the good parts about today were our visitors and also that I got most of my cleaning done. The part that saddens us but is also something we have been dealing with for all of our life as an Airline Family is the fact that Ron is stuck at DFW due to a Storm moving through and messing with all the flight schedules. If we are lucky then he will be able to catch the Jump-seat on the last flight out of DFW tonight which should bring him home around 12:30 AM. Connor and Alexander put on a strong face but they were sad that they would not see Ron for Bedtime and also that they missed out on the tradition of Ron picking up Taco Bell (Tinker Bell to Alexander) for Dinner on his way home from work.

Connor also had a rough afternoon and evening so he colored the picture to show me he was not feeling well and that he was sad. He usually feels this way the day after Infusions and he uses coloring as a way to express himself even thought he voices how he feels just as well.

Alexander got to spend lots of time outside today with Apple and Tasha and overall had a really good day :)

Hugs,

R A C A

Hippo Therapy :)

Do you remember when Connor had his OT Evaluation at Memorial in Colorado Springs and Amanda asked me what my feeling were about Hippo Therapy? Connor and I were very excited from the get go but we had to get approval from Dr. Soep and Dr. Pachman / Dr. Curran and have one of them sign a release form that they approved of this kind of Therapy.

We were in complete luck because all three of our very loved Doctors were excited as well and had no problem clearing Connor for Hippo Therapy :)

Today was our very first look into what this Therapy would entail. It was a good 1 hour and 45 min drive through some very gorgeous Colorado Countryside and the Pikes Peak Horse Therapy Center was everything we could have dreamed of. We arrived and within 5 minutes Connor was fitted with a helmet and then we had to wait for about another 5 minutes for Amanda to finish up with a little girl. We used that time to visit all the beautiful horses that were located in the arena and then it was time to start.

Connor got introduced to 'his' horse who's name is Blink. He has two beautiful big eyes with one being a bright blue and the other brown. At first Connor was led around the arena while he had to do some arm movements without holding on to the horse but his legs. He spread his arms to the side and then above his head. He then had to twist from left to right. After about two labs of this he learned ho to stop his horse and how to make it walk. From there they told him he could say '1, 2, 3 trot' and the horse started trotting. How I wish I had a Video Camera instead of a photo camera! You could hear Connor laughing so loud when he made his horse 'run'. The poor girls who had to keep up with the horse so there was always contact! Connor got to play some Basketball while sitting on the horse plus do five sit-ups on the back of the horse. He got to play several fun games with another boy who was also getting therapy at the same time. They did a couple of 'races' against each other having to wind their horse around some cones and then they did a little jousting where each got a lance and they had to pass a ring to each other when passing in the opposite direction.

The best part for me was seeing Connor having so much fun and not stopping to laugh or smile for the whole 45 minutes. Hands down this was and will be a huge success for Connor's journey into getting better. We will go once a week for three weeks and then one week break for the horse to get some time off and if the insurance keeps Connor is OT then he might be heading into the fall doing Hippo Therapy :)

I know that every child with JDM is affected differently and has different limitations but if you have read my blog and think your child has about the same capacity to move as Connor does then PLEASE ask your therapy center or your doctor to make this available. Even if your child's movements are less but his or hers neck muscles are strong enough it could benefit from it. I talked to one Mom who's daughter has Muscle dystrophy. The daughter looked to be about 7 years old and she was walking not as well as Connor but according to her Mom she did not walk at all but is now walking Thanks to the Hippo Therapy. Can You tell I am am Fan :)

My next goal now is to find a Riding Center or location close to our home were I could take Alexander for some riding lessons. I don't want to join some expensive Club but hopefully there is some opportunity somewhere for Alexander to get the same enjoyment out of this as Connor did.

So if you live close to me and have some ideas pass them on :)

Well, I was in such a good mood with this therapy success that I almost forgot to tell you that Connor's Infusions this morning of Solumedrol and Methrotrexate went really well. Miss Sharon came to the house at 9 AM to take Connor's blood first and then hooked him up and left. We timed it perfectly because I switched the bottles with one hour to go to our departure and I unhooked Connor with five minutes to spare. PERFECT!

So everything about today was wonderful and all that was missing but we will get tomorrow is having Ron HOME again :) and guess what he will hear when he gets Home? the same I had to listen to all afternoon now from two little voices

" Please, Please, Please can we get a Horse?????? " ... NO :)

Hugs,

R A CA

All about Voting for CureJM....

Can you believe we had nothing planned for today? A Day with no schedule? Shocking :)

Of course even a day with no schedule does not translate into a day 'off'. It means I have to sit down and work my way through all our Paperwork and catch up on Bills and organizing all the Medical Documentation that comes into our House thanks to JDM. A friend of ours who has a daughter with JDM said it right today on a Facebook Post that the Insurance Companies and the Medical Billing Facilities are killing tree's left and right by sending out so much paper :(

Of course days like today are bittersweet because I so cherish a day that has no infusions or therapy scheduled but I also admit I do not like facing all the paperwork and cost factors involved in treating this horrid disease.

I want to ask you again to please keep Voting for CureJM and that we might have a shot to win this Grant that Pepsi is offering to the First and Second Placed Winners. $250,000.00 would be a dream for our Research Team's! and just think if this was the drop in the bucket that would lead to a Cure?

http://www.refresheverything.com/makejmamemory

I have downloaded 138 pictures to my Facebook Wall of Connor's Journey from Diagnosis to 51 days in the Hospital to his first day Home. I had to select from about 400 pictures and some I was a bit nervous to post because it shows Connor dealing with his Infusions, to him being hooked up to Oxygen and just feeling miserable. Most pictures will show his true Spirit however which is him smiling even when he did not feel like it. The pictures also show his twin brother Alexanders journey. He had to spend 21 days nonstop at the Hospital as well and seeing his brother so sick and age 5 and not knowing what was truly going on is not an easy thing to handle. The reason I posted all those pictures is to remind everyone of my family and friends why I am asking you to Vote every day. Thank You for being such a support!!!

I also went and typed up a one page letter trying to combine the highlights of what JDM is all about and how it affected Connor. I then e-mailed it to 5 Newspapers and 5 TV Stations around Colorado Springs and Denver. How I hope they will read through it and consider posting it on their Facebook Walls or any other medium they use to reach their readers or viewers. The more votes we can get the better. I just don't understand how it can be that we are not moving from the 12th place?

We only have 11 days left to vote so PLEASE spread the word as well.

Thank You!

R A C A

Therapy and looking back on this weekend...

Today we had to leave the house at 7 AM to make Connor's OT Appointment at Memorial at 8:15 AM.

Therapy went really well and Amanda, Connor's Therapist, told me that they had a cancellation and if we are ready Connor could start the Hippo Therapy this Thursday at 2 PM. The only thing that could cause a hick-up is the fact that the Release Form that Dr. Soep told me she had faxed is missing. We now are both trying to get a hold of Dr. Soep and see if she could fax it again. Connor of course is very excited to start so I hope all falls into place ....

What I was really looking forward to today was Connor's Speech Evaluation. As you know he had a huge laps in Therapy when it comes to speech due to the horrible experience we had with the In Home Care Therapist. I tried to mince my words back then but the more I think back about her three visits to our house the more I get upset. This woman should not work with Children and even now I still see Connor cry from the insults she handed out. I am so grateful to my husband for making the call to the In-Home-Care Provider to let them know that we did not want her to see Connor anymore. Of course that put us also in a bad spot because there was no Alternative and we had to wait to be released as an Outpatient and then wait to get an Appointment for an Evaluation. Well, all I can say today is the I love Kristen, the Girl that did the Evaluation. She was just like the girls at Denver's Children's, fun and considerate. Connor tried very hard and was very cooperative and he told me after the fact that he will like working with her ... Thanks again!!!

Taking a step back now I have to tell you that the Musical on Sunday was a huge success. Connor and Alexander did wonderfully and since Connor was part of the Drama Team he got to sing and participate in 5 Songs and he danced so beautiful. He also did well with his role of 'James Brown the Water Boy :) I taped about 30 minutes worth and I was one very proud Mom :)

The boys got to stay up late that night but not late enough to await the arrival of Ron's 'little Brother' Len, his beautiful Wife Angela and one of their daughters, Kendra. Len and Ron started out together about 24 Years ago with American Airlines and have been best friends ever since. We had a wonderful Monday with just relaxing and visiting. Kendra and I took the boys out 4 Wheeling and when I got tired, Kendra kept going taking both boys all over our property. I got some great girl time with Angela and the Men finished up the grilling some yummy gourmet hamburgers and Brats.

Unfortunately this morning it was back to work for all of us. The boys and I left first to head for therapy, followed by Ron who left for a four day trip today and closing up the house was the Root Family who is driving back to Texas today.

Before I finish I need for all of you to send some prayers, positive vibes and thoughts to a family who lost a daughter, a wife and mother of two. The woman who passed away is a friend of a friend of mine and she was only 36 years old and they are guessing it happened so fast due to a Blood Clot. Very Shocking and very sad.....

I know I am asking for to much but how much I would give to just understand once again the 'whys'. I know quiet a few of you keep trying to tell me or explain to me the 'why' but for those left behind I can not see how any words or explanations can cause comfort ...

Thanks again for Listening.

Love,

R A C A

Sanity? can anyone give me some?

Today was an emotional Day for me to say the least....

For one Sam & RW were leaving this afternoon for Ohio and we will miss them terribly. It has been so wonderful to have them here with us for the last five days and it has also been such a comfort to have them so close to us in Colorado City for the last two years. I am not sure if it is me getting older but I have a harder time saying goodbye to family and friends.

Connor had Dress Rehearsal today at 10 AM until Noon and I am so in awe of Mrs. Kathleen Mezack who took on directing 11 or 12 children in the last 6 days so the Musical can be fun for the Children but also honor God and the message it is going to send to those watching it tomorrow.

I am not sure to tell you the truth how much of the message penetrated my oldest son but earlier this week during camp both my boys came home saying they want to be Christians from now one (as if they had not been Christians) and that they will always be good now and never get in trouble anymore. I of course was cautious about that Statement but thought to humor them and see how far they will get.

Welllllll...... today when Dress Rehearsal was over I was called to the back of the Church to be shown what my little ' Angel' , Connor had done. My son thought he could pass the time between his appearances on stage by coloring his Name and his Brothers Name with a Black Dry Erase Marker on two different Walls. I was told that they had already tried to clean it off but the marker would not budge unless you took the paint of the wall with it as well. I then got a shopping list to buy a couple of items that the Internet mentioned would clean it off. So I put the list on my phone and loaded up my two dumplings, one who by then knew he was in trouble with mom and the other being worried that the loss of one of the Video Games plus of course playing time would also punish him, and we headed to Woodland Park. One item I needed to get was the Dry Erase Marker Spray and the other was Murphy's Oil Soap. When I got home I googled how to clean it and there were several comments that the Magic Eraser would help as well.

We went back to the Church at 4 PM since I was told earlier that someone would be there to open the door for us and we set up and got busy. My learning experience is as followed ... The Murphy's Oil Soap does nothing, the Dry Eraser Spray could work if the answer is to take the paint of the wall as well. The Magic Eraser did work to a small extent of lightening the marks but not taking them completely off. By then I admit my emotional state of mind was going downhill. I knew the walls have to be repainted so I am thinking how to figure out what paint we need and what color, both walls covered the whole hallway so I know it is time extensive and I was also not happy with Connor. I told him the money would come out of his savings or to really get his attention he would have to sell one or two of his Video Games to pay for it.

Right around that mindset our Pastor, Rev. Hurshel Hendrix, came around the corner and asked what the trouble was so we showed him the markings and he looked at them and said that something like this is not a worry it just makes the church complete because it shows there are Children. These are not his exact words because by then I could feel my eyes filling up with tears and no matter how hard I tried I could not stop from crying. He said I should pack up our cleaning supplies and just go home. Well I packed up still trying to compose myself when Miss Kathleen came around the corner and asked as well what is going on. So I told her again and she said just about the same as our Pastor had and also that I should not worry about something that a little paint touch up could solve easily. Well, back to crying it was for me .... I have no idea what is going on with me to tell you the truth. Anyone that knows me well also knows that crying is not something I easily do.

What still has me flustered is the fact that for the last five years my boys have NEVER attempted to color on the walls in our houses, so why now? not that my dumplings don't get in other kinds of trouble, they do all the time. I would have just preferred it to happen at home. I keep asking Connor why he thought of coloring on the walls in Church? and he just shrugs and says he does not know why he did it.

Well, this is a strange Blog Posting but it is what it is.

Hope your Saturday was less emotional then mine :)

..... I am adding this part now after a couple of hours have passed from posting the original post above. How ironic for me to think I start crying over something as simple as coloring on the wall? The last time I remember crying was when Connor got so horribly sick over Christmas and I was actually thinking we might be loosing our son.... I can not look back at everything else I faced and battled in the last six month that had me sit down and cry. If anything I was always ready to do battle!

Also, if some of you think I might be hard on Connor for coloring on the wall considering what he has gone through then I have to say 'I don't think so'. My feelings are that even if you have a child with a very serious disease I do not want to stop parenting and the way I decided he needed to be disciplined was the same way I would have if he was not sick or if it had been Alexander. So no screen time this week and handing over a Video Game that he loves might help him remember to not do this again .....

Hugs,

R A C A

Camp Day's

Officially Camp is over unless you are in Drama Class, because for Connor there still is Dress Rehearsal tomorrow and then the Musical will be on Sunday at 6 PM. I have to admit I am quit curious as to what the outcome will be since at first I was told the little ones would just sing in the background but now Connor got his one speaking role so he is very excited.

It was a bit of an up and down the last two days for Connor. Yesterday he did not want to go to Camp at all and when I asked him why he said there was this one girl that was mean to him. I told him he had to speak up for himself and if she was still being mean to him (which he said was her making faces) then I said he needed to talk to a coach. Well, he was in tears when I dropped him off and I felt bad for telling him he needed to stick it out but of course when I picked him up he was happy and told me the girl had been nice today.

Today he was a bit hesitant at going again and I was playing with fire but told him if he preferred to stay home he could and he said 'no I need to practice since I am a part of the Play'. So all went well and now he is very much looking forward to Sundays performance.

There was also one little concern about Connor and him coming down with a head cold on his second day of camp. He has a stuffy nose, had a sore throat and is coughing but NO fever. Of course I was getting very paranoid so called Dr. Soep's Nurse Michelle as to what I should be doing or looking for since this was my worry all along that he would catch something the moment I expose him to people outside our family. Michelle was of course able to calm me down and told me to treat his cold as I would normally and to watch for a fever and also to not give him any Sudafed at all. I truly wonder how all my JDM friends do this who have their kids in school and other activities. The Camp of course was my first reach out to something like that and I have to say I am still weary....

Alexander finished his Sports Basketball Camp today and LOVED it. He said he wants to go to Basketball Camp again next year and this alone is amazing because so far no sport we exposed our boys to took a hold. So maybe Basketball it is :) I am still hoping for Ice Hockey, thought - haha

To celebrate our boys Graduation we went to Cripple Creek for a tour at the Jail House which proofed again what great little character actors I have, a visit to the Old Fashioned Candy Store and then we all got treated to a Dinner at our favorite 'Ralph's' from Auntie Sam and Uncle Ron :) A great finish to a busy but fun week. Oh and best of all for me ... after living here in Colorado now for almost three years I finally got to see Cripple Creeks Wild Donkey's. They walked right passed our car and they were so close we could have touched them .. PRECIOUS :)

Ron right now is on his way to Anchorage, Alaska and I admit to being jealous that he gets to see and spend time with Niki and Harlow. How I wish we could have gone with him but I am not giving up and I am sure it will happen before the summer is over :)

Wishing all of you a great weekend!

Hugs,

R A C A

Nichole Rae Smith :)

This Blog will be all about my lovely Daughter Niki and the only thing I feel sad about is that it took so long for me to do this ....

If you followed this Blog then you know that in February, while we were in Chicago at CMH, our lovely daughter became a Mom to a beautiful baby Girl, Harlow.

Niki came in my life at the age of 12 when I met Ron and if anyone would have asked me if I was nervous of becoming a Mom to a twelve year old at the age of twenty seven I would have said 'yes, very much so'. Never would I have thought that this girl would steal my heart within days of knowing her. I felt bad for her many times because she had to humor my ability of figuring out how to parent when I was still growing up on my own in many ways. She did marvelous of course and I think we both survived the last eleven without scars for show :)

One Story that will always make me smile is the first time Ron went on a trip and I decided to take Niki Roller Blading at a Park in a neighboring town. Of course I knew my ability to get lost because this is what I do best so when we did get lost and Niki asked me where we are I replied 'No Idea but don't worry we have a full tank of gas and now we get to explore some new sights' She looked at me like I was crazy and this is when I asked myself if I did not get the 'Mommy Lesson about not getting lost with your child' :)

How could I sum up Niki in a few sentences? I know she has a huge Heart, she is very kind, non-judgemental and everyone that meets her and gets to know her can call themselves lucky. She has always been a beautiful Girl but if you just look at the outside you miss her true being for it is her inside that makes all the difference.

I am beyond lucky to call Niki my daughter and if you know me then you know how much I love showing her off. This is why I feel bad I have not put a light on her sooner on this blog. She has been a part of Connor's JDM Journey from the beginning and in many ways it has affected her harder for she is not here day by day in person to see what was and really is going on.

Now that we are all so busy voting for the Pepsi Refresh Research Grant Niki has reached out through her Facebook page and even had a friend of hers who is a DJ for the biggest alternative Rock Station in Alaska post it for their Audience on their FB Page.

There is a lot more I could type but then I have to safe some for the future :)

My biggest wish for my daughter is for her to know ALWAYS how much I love her and always will. She is the best daughter I could have dreamed of having and now I get to watch her being an amazing Mom. Let's see if she ever gets lost driving with Harlow in the car :)

Hugs,

R A C A

Sports Camp in Lake George Day 2 out of 4 :)

I have all the intention to talk about Sports Camp but first I have to start out and apologize to my family and everyone one else that crossed my path this morning!

Truly I am not sure what came over me but I was such a grouch this morning (well my husband might tell me I am one lots of time - haha) but this morning I was short with everyone and snippy at it's best.

I told you once about me having the Stockholm Syndrome when we 'lived' at CMH in Chicago? well, today my boys experienced it. We finally made it to the school for Day #2 of Sports Camp with about one minute to spare and when it was time for the boys to go in the center to sing a couple of songs and listen to a story they did not want to go and became very clingy. I used to be used to them being clingy two years ago and before then but we made huge progress in the last two years so it set me back. I asked them what was wrong and they said they wanted to stay with me ... now you would not have said this if you had spend this morning with me!!! I personally would not have wanted to be around me :) I told them what they preferred .. staying at Sports Camp and having fun of spending more time with a Mom who is not being nice this morning and they said 'with you Mommy' ... see Stockholm Syndrome at it's best :)

I have to say luckily they decided to stay and after I went to Woodland Park for errands I was starting to feel better. I would have loved a good argument this morning but no one was ready to go into battle with me today :)

The boys love Sports Camp and so far Alexander seems to learn something about Basketball but he was a bit upset that he missed day 1 of Camp because this is when all the kids supposedly learned how to dribble a ball. Connor is enjoying Drama and he was assigned a role today of Water Boy in the Musical. He is very proud of his one line ... 'Water, Water ... Water for everyone' at least this is what he told me :)

I have no real updates about my Dad at this point as he did not go into surgery as planned this morning but instead had some tests done on his bladder. He was unhappy when I talked to him this morning because he had 'planned' to go home today and now he told me he had to stay one more day. I wish I was as optimistic as him but figure he might stay longer then two nights. I so wish I could be there!

Also please send some positive thoughts and prayers to the Howison Family, especially Hope's Grandma who is still in the Hospital and ICU with some complications from her surgery. There is one family that deserves a break for sure so any help from your end is greatly appreciated!

and finally I better add the link to Vote for CureJM to win the Pepsi Grant on here because we really really need to win this one. JDM is the whole reason I started this Blog and I can not wait for a Cure so NO CHILD has to ever face this disease. Thank You for Voting and please keep Voting until the end of July and tell your friends and family to vote as well. I might be bugging you about this but it will be the kids that will Thank You when a Cure is found and they know you were a part of making this happen :)

Make Juvenile Myositis a Memory | Pepsi Refresh Everything

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Hugs,

R A C A

Steamboat Springs & Aspen Get Away ...

My lovely husband surprised me in the beginning of July by booking a weekend

get-away to Steamboat Springs and I can tell you in all honesty that we as a family have traveled to many countries but never have I looked forward to a vacation as much as this one. It was just three days but the need for us to get away as a family and to just have fun was never as important as this time.

By now you know how involved and pulled in we as a family became when Connor got sick with a disease that limits everything what we used to know and used to do as a family. We had to adjust in so many ways because the life we had for the last six months has very little comparison to what we considered normal to us before December 20009 and JDM. To the outside world I know that Connor looks so well now and only when you look close you might see his 'handicap' at this point. We are lucky (I know some of you don't like this term but it fits how I feel perfectly) in regards to Connor's progress compared to the other families we meet who have children with JDM. I also know to be cautious because I heard from other families who's children made great progress initially and then faced a flare-up that threw them back to the beginning. Of course you know me by now that I am still somewhere inside believing that this will 'not be us'!!!

We had three beautiful days in Steamboat Springs, visiting the 36th Annual Arts Festival, getting up bright and early the next day at 5:30 AM to watch the 30th Annual Hot Air Balloon Rodeo and of course we enjoyed to explore Steamboat Springs by way of Gondola, Pool Time and some great local Dinning experiences :) It was just what our little family needed and I am so glad we got this time together to recharge :)

I have to admit I was entering this summer with some depressive moods due to hearing all the travel plans from friends and seeing pictures of some wonderful family vacations friends of ours went on. Oh, do not think for a minute that I was not happy for them but I also had this voice inside of me that kept bugging me as to why can't we go somewhere for more than one night and have some fun as well?

Ron and I talked about this earlier this summer at how amazing it is to live in a State that is a huge travel designation to so many people in the Winter and Summer and how can we disregard that we live in one of the most beautiful places and only have to go in the car for a couple of hours while others have to drive long distances or fly here? So I am in a real Colorado set of mind right now and have to say it is wonderful to check off all the places I wanted to get to know. We have so far explored Durango, Pagosa Springs, Silverton, Ouray, Denver, Breckenridge, Vail, Avon (Beaver Creek), Steamboat Springs and Aspen, and I wish I could tell you which one I prefer. I loved each one of them for different reasons, so if you like to hear my opinion on all of them just e-mail me :)

We came home through Independence Pass which for those of you that have used this Pass before know it is just GORGEOUS! we took so many pictures and pulled over so many times - it truly shows Colorado in such a beautiful picture :)

Connor did really well on this trip and we didn't even bring his Wheel Chair with us. We figured we would not push it at all and that we would take plenty of breaks along the way. The only times he complained was when he got bored :) This is when he asked to be carried and instead we told him to sit and rest for a while. So over all we are getting the hang of going places and being mobile with his medications as long as we take our trips in between infusions and Injections :)

We took about 400 pictures on our trip and we are happy to be home now so the boys can go to Camp this week and also to spend some precious time with Ron's Sister Sam and her husband Ron. They are on their way to move to Ohio and I am hoping this means that in the future I get to set foot into one State I have never been to .... :)

I do have some anxious news today but really have no idea yet what the prognosis is until I talk to my Mom tomorrow. My Dad was admitted to the hospital today and tomorrow at 8 AM he will go into surgery for his Prostate, if we are lucky. The Doctor mentioned to my Mom today that he is concerned about my Dad's Bladder and asked to have permission to take out a tumor if he finds one. It does not help our mental serenity that my Dad's roommate is there due to Bladder Cancer.

How I wish I could be in Germany right now to be there as some support for my Mom and Dad and of course knowing what the next three weeks look like due to Connor's medical schedule I am feeling a bit helpless .....

Tomorrow I will write about the boys Camp experience so far and all I am going to say now is that Day One seemed to have been a success :)

Hugs,

R A C A

Chicago Trip #2 Up-Date :)

All in all the news we got from Connor's Check-Up Appointment at CMH was really good! :)

We arrived at the Children's Memorial Hospital in Chicago at 1 PM on Wednesday and were moved to a room straight away. The best news came from Connor's Therapy assessment which had a score of 26 two month ago and this time around he improved by 19 points!!!!! the goal I was told is 52 and he got a score of 45!!!!!

This really was amazing even to the girl taking the score and as of now we really need to add attention to his feet. We also got the most wonderful green light from Dr. Pachman about the Hippo Therapy that Connor would love to be part off. So now Dr. Soep will fax the release form to Memorial in Colorado Springs and if all goes well Connor could be in the program as soon as this fall :) Connor of course was star truck again by seeing Dr. Curran even thought he tried hard to not let it show :)

Another highlight was seeing Erin again who took Connor's finger nail pictures and all looked good on this end as well. We got to see Jacque for about 2 minutes and I got to put a beautiful face to a name I have seen on the CureJM board but also on my blog 'Robin' :) It was so precious to me to meet her son Ryan even if it was just for a couple of minutes and I am sad that Connor missed out on spending some time with him. It still amazes me that you can meet strangers and feel a bond and connection within a heartbeat! So I will say it again but the JDM Family we are a part of is something I am glad we get to experience in every way.

There were two big heartaches about our visit to CHM. One came in the form of Connor's blood draw through his port. He always has to give quiet a few vials of blood and we came prepared in the form of EMLA Cream on his Port. The 'first' Butterfly Needle went in fine and Connor's Nurse was able to take about 6 vials and vola the line got clotted :( This was bad news for Connor who already is very anxious before each 'poky' but this time having to face a second poke within a few minutes was almost to hard to take. So the good Mommy I am I figured I take his mind off the needles and have him focus with me on the World Cup game between Germany and Spain. In retrospect this might not have been a wise decision since just when the needle went in the game finished 0:1 for Spain. Connor was crying and sobbing so badly and the nurse kept saying 'I am so so sorry for having to do this twice' that Connor ended up snapping at her 'I am not crying because of the Blood Draw but Germany just lost' what a little fan I have :) I can gladly report that he felt better by the time the needle came back out and he was greatly rewarded after the Hospital visit from a stop at 'I Cream' where Miss Kim and Evan took us to.

This brings me to my second part of this blog. We have been to Chicago twice now since the Hospital release and each time 'Thanks' to Kim we have been experiencing some of Chicago's history in food. We twice had the treat of 'Hot Dawgs' which was established 1944 and each time we ate at the original 'Hot Dawgs Place' :). Then we also got to enjoy some original Deep Stuffed Pizza but I forgot the name of the Restaurant now, never less it was YUMMY but you truly can eat only one slice and you are full :) and then there was 'I CREAM' ... what can I say about a place that makes your very own ice cream right in front of you? You get to pick the flavor, the color and your toppings and then they pour everything into a mixer from which your ice cream will be served to you within a couple of minutes. Connor had Yellow White Chocolate with Butterfingers and Banana toppings and I had Hazelnut and no color but Nutela and Banana Toppings .. yummy, yummy, yummy :)

We also got to stay with the Miller family again on this trip due to Ron's change in schedule and the generosity of Kim & Family to take us in. Connor and Alexander were so happy to be able to spend time with Grant and Evan and I had some wonderful Girl Time with Kim and her Mom Ervil :) On Wednesday morning we had a really fun outing to the Botanical Gardens to see the Miniature Train Exhibit and the boys loved seeing Mount St. Helen's erupt :) and in the afternoon while Kim, Grant, Connor and I headed to CMH Alexander stayed behind with Evan and Ervil who told me she would not mind watching him. Well, I just hope she had enough time to recover from that event since anyone that had babysat Alexander before knows very well that you hardly get a break - haha

It is hard to put three days into one blog post and I hope I did it justice. Our home coming was wonderful even if the temperature read 48'F. We arrived driving through Hail, Rain, Thunder and Lightning but the best part of all of course was seeing Ron again after 7 days. Tomorrow we are leaving for our summer getaway vacation and all four of us are so looking forward to it.

Wishing all of you a wonderful and peaceful weekend :)

Hugs,

R A C A