A Family of Four :)

A Wonderful Day in every way because Ron is home for two days and we enjoy having all four of us together. All three of my men went and got haircuts today and I have to say I was shocked when Connor asked to have a different cut then his brother this time around and actually asked to have it all shaved off. Now we let him get his way 'almost', we compromised with him having at least a little bit of hair left on his head :) At first their looks changed from identical twins due to Connor's JDM and now it is changing with them hitting and Independence streak from each other. They are brothers right now but you could not see the twin factor at this time :)

After the haircut and some shopping (Ron got some sleeping Cots so that in the near future there might be a sleepover in the Teepee for the boys and Tasha & Apple - NOT me ;-) we went to the Chicken Man Place to eat and it was a fun place and the food was good as well. The only down side in our boys eyes was the fact that the Chicken man himself was not present :) They did ask me if he loves eating Chicken here and I told them that I hope not since the idea would be a little bit to cannibalistic - haha.

I also have a confession to make that I broke a rule or statement I have made since I became a Mom to our boys. As you know I love to read and I always said I want our boys to read certain books before they get to watch the movie. One of them is the 'Lord of the Rings' and the other was 'Harry Potter'. Well ....... I broke down last night and choose our movie for the night as 'Harry Potter'. There are really three reasons why I changed my mind and one was the fact that Connor and Alexander have been asking to watch it for many months, ever since Connor got to watch about 15 minutes of it on his Ambulance Ride to the Airport in Chicago and since I started reading to them the first book, the second reason came when I decided I was tired of the selection we had and wanted to watch at least one kids movie we had at home that might keep my interest :) and the third but most important at all .... one thing I learned for sure since Connor got JDM is that we never know what will happen in the future and if they like to watch it now then why stop them? there will me more books out for them to read and I am sure they will not stop to develop a love for reading just because they did not read Harry Potter. So why hold of for a few years when they can love and enjoy the story now? We are also reading the book so in a way it was a compromise - haha

Now what I just wrote will explain why this whole day revolved around Harry Potter (Alexander), Ron Weasley (Connor) and a couple of Dragon's (Apple and Tasha). Ron said it was refreshing to hear some other characters running through the house and the playground that did not sound like Star Wars :)

Hope Your Day went as well as ours!

Hugs,

R A C A

P.S. The beds are set up in our Teepee as well so if one of you wants to come over for a sleepover we have 4 extra beds now :):):)

Downtime :)

May I say that it has been so good to stay home today? It is such a pleasure to enjoy our home when it seems we are back on the go so much lately.

Today Connor and Alexander spend almost all morning and early afternoon outside and they only ventured in for Lemonade or Food. We even treated ourselves to Popsicles between breakfast and lunch. This is were I realized how much fun we Adults loose sight of sometimes when my first thought was 'no' we have some Popsicles this afternoon ... and then my brain went into gear and said 'why not?'. So at 10:30 we sat on the Front Porch enjoying ice cream :)

My husband gave us a highlight this morning with a Skype Call that within a few seconds had as worried about his return home tonight when he mentioned a mechanical and that their Departure might be delayed a couple of hours. The good part came in the form of a phone-call Ron got in his Hotel Room while still talking to us on Skype that the problem was fixed and that he should be leaving soon!

The boys started a new tradition for their Dad which results in Ron having to bring home Taco Bell Dinner (Tinker Bell to the Boys:) and this was in big jeopardy if Ron would have been delayed. This way they now get to see their Dad before going to bed but also have their Taco Bell Mexican Pizza tonight :)

Connor, Alexander and I also enjoyed a wonderful visit from the Morgans this morning and I am very selfish when I tell you that I love having them as bonus Grand Parents to the Boys but also have someone in my life that always listens and comforts but never judges :) Everyone should be this lucky to have friends like this when you don't have family close by!

As to the WorldCup News. Japan lost to Paraguay in a Penalty Shoot Out 3:4 and Spain beat Portugal 1:0. Now I will be an a WorldCup Break until Friday.

Hugs,

R A C A

OT Therapy Evaluation :)

Today at 2 PM Connor had his OT Therapy Evaluation at Memorial and it went extremely well :) Connor loved the girl that did the assessment (Amanda) and she said he was doing well but that she will recommend two different Therapy Sessions as long as Connor's Doctor agrees to it. One will be Water Therapy (YEAH) and the second is called 'Hippotherapy' and that means Horse Riding. This kind of therapy is from Germany and it helps build muscle strength and core body strength plus balance and it would just be perfect for Connor. You should have seen his smile when she mentioned this :) Of course we need a Doctors approval as I mentioned and also the summer session is already filled up due to the high demand but the Therapist will try her best to get him into the fall session :)

My husband also called this morning with the news that he has changed his whole July schedule around and will now be able to go with us to Chicago which is heaven! We should leave on the 6th and be back on the 8th and since we now have the most wonderful Dog and House Sitter truly everything is falling into place :)

As to my World Cup News, which you have to live with right now because I truly am hooked. The Netherlands won against Slovakia 2:1 which was not a big surprise and the Powerhouse of Brazil won 3:0 against Chile. I wish Chile would have won because I think Brazil is just so strong and anyone facing them will have a huge battle on their hands. They are after all the only country that has 5 WorldCup Trophy's to their name :)

Hugs,

R A C A

Back to Work and the WorldCup....

The biggest upset for our little family yesterday was seeing Ron go back to work. He left for another 4 day trip which was suppose to include San Jose and Santa Domingo but was changed to San Jose, JFK and San Jose :( It truly is hard to see him go when we as a family are so happy together when he is home. The part I am focused on is that his retirement is within reach and we have to hold on just a bit longer.

The boys and I had a very busy day yesterday with a PlayDate scheduled at the Zoo for the Teddy Bear Days. We spend almost 5 hours there with some very precious Mommy friends of mine: Jamie, Vicki and Rena. I believe I have not seen them since Connor got sick but the beauty of it all was that it felt like we just saw each other last week. Of course it helps that we are always in touch through Facebook. Between us four Mom's there were 15 kids and the chemistry between the children was heavenly. What also made this PlayDate so special was the fact that all the interaction with the others kids made Connor walk for at least 90% of the time. He only tired towards the end of our time there and by then he had walked almost every hill that was in the Zoo!

The Teddy Bear Day's were also special because it asked for the kids to bring their favorite stuffed Animals so they could have a checkup done. Connor brought his Curious George Doctor Monkey who ended up getting a Shot and X-Rays taken and Alexander brought Boots who had a burn on his head from when he touched the Fireplace in our Home. Boots got s Shot as well and also had some blood taken and an X-Ray done. He ended up with three band-aids and some oxygen. The boys were so serious through it all and really were attentive to their Animals :)

I was not feeling well yesterday so was truly worn down after 5 hours and did not feel up for a one and a half hour drive home so I decided to take the boys to see Toy Story 3 which they of course thought was a great treat for them. It was needed for me because I was able to sit still for a couple of hours :) Never less the movie was wonderful and had some great lessons for my boys. I even had to cry in the end and my boys told me on the drive home that they learned it was important to treat their toys well and also to share them with other children when they don't want them anymore :)

..... and now I am moving you to the World Cup again. I am sorry that the USA lost to Ghana but I hope this will not discourage you to watch the rest of the World Cup. There is so much Spirit in Soccer so please consider picking a country that is still left and root for them. There are as of now: URU, GHA, NED, SVK, BRA, CHI, ARG, MEX, JPN, PAR, ESP, POR and of course if none of those due to trick then there is Germany who just beat England 4:1 this morning. Connor and Alexander were bouncing all over the living room yelling 'Germany' 'Germany' for almost 90 minutes nonstop :). I am not sure if I will ever get my dumplings to play the game BUT I am doing the best I can to get the spirit of the game ingrained in them. We missed out this year in rooting at the Olympics because we were camped out at Chicago Children's Memorial Hospital but we are making up for it now :)

Now we are trying to lay low for the rest of the day and catching our breath. Plus our highlight for today is waiting for a Skype call from Ron ....

Wishing all of you a relaxing Sunday.

Hugs,

R A C A

.... summer time ...

Everything about today has and is lovely. We all woke up in a good mood and the weather promised to be beautiful sunny with just enough clouds to give us some shade and a slight breeze where you just crave spending time outdoors.

All of this got me motivated to wash all the bedding's throughout the house and then go on a little run and I say 'little' because I am so out of shape it is not funny. I ran to the end of our property and back and I was getting worried about my breathing until I realized that Tasha and Apple were breathing just as hard as I was :) to their defense I have to admit they have been playing and running all morning, thought :)

The boys and I also were able to do some 'Yoga', thanks to the instructions we received at the Therapy Evaluation yesterday. Maybe I am brave enough to add a Video of the three of us one day to show what it looks like when we are all attempting the 'bridge' 10 times for 10 seconds each. I am sure it makes for a funny sight :)

After we all got a little nap time in we spend the afternoon sitting outside on the Back-Deck for Coffee & Cake while listening to the thunder roll in. There were just a couple of lightnings but the view of the clouds moving and the air just slightly cooling of was just heavenly. Everything was so harmonious about today and I wish I could bottle up the feelings. Ron got some work done as well cutting down three tree's so he can widen the driveway to the backyard and after this we sat outside reading books while it rained :) Yes, we sat under the porch :) and what started out with just Ron and I ended up with the four of us 'reading' outdoors in the rain.

What I also cherished today was the recognition that our boys are getting to experience some of the freedom Ron and I had as kids. This morning they both took off playing outdoors in the playground and forest in front of the house and other then me looking outside the kitchen window once in a while they had complete freedom. I have a huge comfort of course due to the dogs being with them and it is liberating to know that they are getting some of the freedom to play unsupervised in a way just like I did when I took of at their age playing at the lake with my friends and only coming home to eat :) I think this art is being lost because there are so many thinks to worry about now and truly if we lived in town or in a city I would never allow them to have this much freedom at their age. Having a drive-up alarm and Video surveillance of course lets us control their freedom but they don't know that :):):). So today it was brought back to my memory why this move to Colorado was so important. We moved out here so our boys can grow up with a sense of freedom and confidence that might have been harder to teach in a City. Of course there is Street Smarts as well and I hope they get that from our travelings :)

Okay, I am back to cooking dinner now and hope that your Friday was as peaceful as ours was :)

Love,

R A C A

Therapy Evaluation & First Methrotrexate Injection done by Mom :)

Today was Connor's first PT Evaluation at Memorial and so far so good. Connor was very anxious and I told him to do the best he can and oh he was trying so hard ... he did very well for about the first 45 minutes but then got very tired after having to walk a lot and even go up and down a big set of stairs twice. He was suppose to balance on one leg and was unable to, but if you know were he was just a couple of month ago you would have been as proud as I was :) He even did 6 sit-ups and it was a beautiful sight :)

After we finished we were told we would receive a phone call with a schedule for him. When we finished I asked Connor where he would love to go and have lunch and he picked to my surprise Poppey Chicken. It was a treat to have some one on one time with Connor today and I was happy that the same was happening for Alexander who got some precious one on one time with Ron at home. They actually went shopping and had lunch at Burger King. So overall the whole family Smith was doing a good job today at supporting Fast Food Chains :)

Today was also the day for Connor's Methrotrexate Injection and even thought he had one already two weeks ago this was the first one for Mommy and I have to say I am very proud of me as well. Ron and I talked it over with Connor about where he would like the shot and if he prefers today or tomorrow. He was aiming for tomorrow but then we told him if he waits then he will anticipate it all night and this way if we do it now it will be done with. So brave little boy that he is we put the EMLA Cream on and after one hour I put the shot in his tummy while Ron asked him what Cowboy movie he would like to watch and surprise, surprise he still watched me BUT IT DID NOT HURT AT ALL! :) I am not sure who was more relieved, Connor or me, or who is the end was more nervous ... yes, me!:)! A good thing that Connor has such confidence in us. I am just glad it is over and now that this went so well we will keep using his tummy :)

So and now all of my three men are sitting down watching a John Wayne Cowboy and Indian Movie. Life is quiet and peaceful once again and I love it.

.... ALSO before I end my blog I want to say 'THANK YOU' to all our beautiful friends who took me at a complete surprise when so many of you stepped up to offer watching our boys after I asked for recommendations of an Hourly Daycare Center in Colorado Springs so Ron and I could have a Movie/Dinner/Date Night ... I should know better then being surprised because how many times have I learned now that even thought we do not have 'Family' living close by we do have a Family in all of you! You are and have been more then friends to us and I hope you know how much we love and appreciate all of you.

Hugs,

R A C A

Therapy is a go .....

A big THANK YOU today to Dr. Jennifer Soep for getting us into a Therapy Evaluation tomorrow! I had a wonderful talk with Dr. Soep this morning and she talked to the person in charge at the Memorial Pediatric Center and she told them Connor needed to be assessed as soon as possible and just one hour after her call I got a call from Memorial and they gave us an Appointment for tomorrow at 11:30 AM :) I am happy but it also shows they react better to a Doctor's call then to a call from a Mom ....

I am also glad to announce for those of you that do not follow the World Cup that the USA beat Algeria 1:0 and is the leader of their group ... the last time this happened was in 1930! Way to go USA!

And then of course I am so so so happy to say that Germany beat Ghana 1:0 and is also the leader of their group, which Germany has been uninterrupted since 1984 :) Now Germany is facing England, while the USA gets to play against Ghana. So you see it is not to late to join the fun! The games are shown on ESPN ... so get a move on and support you home team!!! They deserve it because they are representing your country in a wonderful way that should make you proud.

I also want to mention that Connor and Alexander told me today at lunch that their favorite part at the Renaissance Festival were the Belly Dancers. When I asked them why this is they both replied:

'Because they were beautiful and showed a lot of skin which we love' ... spoken from the heart by two 6 year old boys :) and you tell me this is not genetic? - HaHa

So now I am off to take a break and check on my husbands flight home. It is WAY oversold and I hope he gets a seat. I additionally deserve a break because I cleaned and cleaned today and my hallways and bathrooms are sparkling - lets see for how long :)

Hugs,

R A C A

Blood Work Up-Date

I received a call from Dr. Soep this afternoon and the blood levels all look good! :)

There are a couple of levels that have changed a bit but nothing that looks alarming. We are still waiting on two results that had to be send in and if those would come back with high readings then we are considering going back to weekly Solumedrol Infusions BUT as of now we are going to stay on the every other week schedule.

We are hoping that we will hear something from Memorial about Connor's Therapy as well and Dr. Soep is talking to Michelle again tomorrow and if needed will call Memorial herself this week.

Connor will also get another therapy assessment next week when we go to TCH for his scheduled IVIG. Dr. Soep e-mailed all of Connor's Therapists from when he stayed there at TCH and hopefully they can take a look at him and give us there thoughts on what is going on.

I am truly happy to see things moving!

Hugs,

R A C A

The Day after Fathers Day and Blood Draw :)

All I could say is that our Fathers Day weekend was just wonderful!

... but then you know already I have way more to say then that :)

We started our weekend with traveling to the Renaissance Festival in Larkspur, CO where we met up with Matt, Jennie, David and Zachy. The whole day there was just magical and truly our whole family had smiles on their faces. We started out with a ride on an Elephant followed by the boys getting their first try at Archery. Gosh how focused they were when they finally got to hold a Bow and Arrow :). Then we split into teams of two for some Jousting. First came Alexander and I on a wooden horse and sadly I have to admit after two tries we kept missing the ring we were suppose to get with our lance. Well, Alexander and I never heard the end of it when Ron and Connor got it on their first try! .... beginners luck is all I might say about this matter :) Connor did win a plastic knife and since he has a twin brother they gave one to Alexander as well ... there truly are times when it pays off to have a twin :)

We as a family have been to Scarborough Fair in TX many times and I have to say that the Renaissance Festival here in Larkspur was even better. If you live in CO and you have not gone yet please consider going!

Connor did fairly well throughout the day but still used his wheel-chair about 60% of the time, plus I kept him on Tylenol throughout the day.

We left right at closing time which was at 6 PM and we were the trying to attempt dinner at the new Restaurant on 24, Ruby's BBQ, only to find a line of about 40 people waiting in line to get on the waiting list .. CRAZY! so we will give it another try on a weekday :) we then all ended up at Cast Aways, which I understood to be a Pirate Themed Restaurant and then was surprised to see a German Menu. It was okay but the Jaeger Schnitzel was not that impressive :)

So and then Sunday, Fathers Day, we spend at home having a fun time with our friends again who I must say felt more like Mothers Day because the men took care of our dinner which, Thanks to Mr. Matt & Miss Jennie, entailed Chicken, several different kinds of Sausages and Ribs ... I am still trying to recover from the food I ate! The kids had a ton of fun playing outdoors all day which included at Treasure Hunt again and lots of jumping on the Trampoline. I leave what all happened on that trampoline between the Olson family and ours BUT I know I will be laughing about it for as long as I live :):):)

So and then we finished the weekend with a leisurely breakfast together before we had to face reality again ... Connor had some Blood taken today from his Nurse, Sharon, and we will now wait to see if the new pain Connor is complaining about in his legs and knee is due to some more inflammation or if it is due to him having such a long break with therapy.

Today, Tuesday, we are back in the swing of things and we started out with a Neurology Appointment with Dr. Stephen Smith who took a look at Connor's legs so he could address the concern that was mentioned in Chicago last time that there might also be something going on with his Spine or Spinal Cord. The initially diagnosis is that one leg is a bit more weaker but Dr. Smith thinks this might still be due to the JDM. We will see him again in four weeks so he can look again if there has been change.

Both boys were measured in height today at the Doctors Office and right now Connor is 3 feet and 10.5 inches, while Alexander is 3 feet and 11.5 inches. So 1 Inch separation.... and about 5 pounds in weight. My babies are officially not 'identical' in looks anymore ... :(

Wishing all of you a good week and I sending special thoughts today to Hope's Grandma who is in the Hospital right now. We hope everything goes well and that she will be home again soon!

I am also sending some Hugs to my friend Caroline, who is traveling today to be with her friend in Seattle. I mentioned her friend in my blog once before but admit I never met her. I don't think you have to know a person to send some prayers their way if they are facing a tremendous battle with cancer ...

Love,

R A C A

Happy Fathersday!

I am keeping it short this morning but wanted to wish my husband a most wonderful Fathersday today.

You always know what kind of person you truly are when faced with a challenge!

Everyone can be a good person when life travels a 'normal' path but when facing the challenge of having one son with a disease that has no cure and has been known to be terminal, balancing being a great father to the 'healthy' son, being an attentive husband to your wife while also taking care of your family financially with the added stress of Medical Bill's that just won't stop heading our way then you truly see what a man is made off. I know for a fact that there are many who would not have stepped up the plate but turned away.

So, THANK YOU to my husband for all he has done for us. The boys love and adore you as does your wife and I am so grateful everyday to have a husband that is always there for us and has never let us down....

Love You so much!!!

Connor, Alexander & Anke

A New Day :)

So I have been thinking again last night that by now our boys have been to 5 Hospitals in 6 years (well actually 6 if you count the 4 month stay at the Hospital in Khabarovsk, Russia when they were born premature)

I think I should be allowed to write a preview of the following Hospitals and what we think of them:

*Children's Hospital in Dallas, TX (Tethered Spinal Cord Surgeries for C & A - 6 days each)

*Children's Memorial in Chicago, IL (JDM - 21 days)

*The Children's Hospital in Denver, CO (JDM - 31 days)

*Pikes Peak Regional Woodland Park, CO - ER (2 visits)

*Memorial Hospital in Colorado Springs, CO - ER

Out of those five, three would get excellent marks, one gets good marks and one I would without a blink give an F (Failed). Those who have been along our journey will no which one this is :)

Now that we have what happened yesterday behind us I am now moving forward to our next goal which will be getting Connor back into Therapy. I admit that having a break was nice for about one week but we are now at over four weeks with no therapy at all and I know for sure that it is showing on Connor. Just lately he is asking more and more again to sit in the wheel chair, he is telling us his knee's are hurting and he looks and walks more stiff with a slight limping to it. Michelle told me at our call yesterday that she talked to Memorial and that they requested a few more papers and that she will fax it to them ... so now i just hope they will call is next week! The last think I want now is for us to move backwards ....

I did give Connor his Solumedrol Infusion this morning and just about all day he complained about his muscles burning in his legs. He also was a bit more grouchy as usual and by 7 PM he was asleep on the sofa. I so hope this is not a omen that the tapering of the Steroids was to soon.

I wish all of you a fun weekend!

Hugs,

R A C A

Infusion Day ... with a visit to the ER

Infusion day here at our Home for Connor again and even thought he spend some time outdoors this morning he keeps coming back inside to check on me, which tells me he is anxious. He really does well when he gets 'poked' but it never is a pleasant experience and he tries so hard to be so brave. That is when it keep hitting me over and over again how much has been asked of him and how much has been done to him in the last six months.

Now I wrote in this spot earlier today about what was going on in my mind and before you know it your focus changes really fast once again.... so to hear about me you will now have to wait for another day :)

Connor's Nurse, Miss Sharon, came by at 11:15 to take Connor's blood and start his Solumedrol infusion just as always and for some wicked reason the butterfly needle went in just fine but there is no blood return at all. This means something is wrong with the port and we can't administer the drugs if we have no flow ....

Sharron, bless her heart, has tried for almost one hour to get the port to work with no success. So now I left a message with Michelle, Dr. Soep's Nurse and I am hoping for a call back soon.

I want to tell you all who followed my frustration when we left the Hospital and transferred to in home care that by now I have a true respect for Connor's Nurse Sharon and I am glad we did not throw in the towel back then. She has been nothing but attentive and focused to Connor's care.

I did get a call from Michelle at 2 PM and she called about Connor's Therapy at Memorial so I told her what has happened this morning and she told me she would get back with Dr. Soep and call me right back. I also went and e-mailed Dr. Curran and Dr. Pachman to get their advice and I got a reply from Dr. Curran a couple of minutes ago to let me know that I should give Connor the Prednisone and that most likely we will go to The Children's Hospital to have an IV tomorrow for the Solumedrol and Methrotrexate plus have the port looked at ...

Shortly after that e-mail I got a call back from Michelle who told me to take Connor to the Memorial Hospital in Colorado Springs and ask them to give Connor a TPA. This is from what I understand a specialized medication that can resolve a possible blood clot in Connor's Port.

So I went and packed up the boys and just when I was about to leave I got another response from Dr. Pachman this time, who told me just like Dr. Curran to go ahead and give Connor the Prednisolone and then contact the Hospital to have Connor's Port looked at. I once again can not tell you all enough how much love we have for Dr. Curran and Dr. Pachman who both responded to my e-mail within an hour and two. They are so far away from us and are busy beyond believe and they still reach out each and every time ... PRICELESS!

Of course I also want to say THANK YOU to Michelle who got back with me and guided us towards Memorial to get the ball rolling.

We arrived at Memorial Hospital at 4:15 PM and the ER was PACKED! almost every seat was taken and it was a huge waiting room. So I went and found us a place to sit after checking in and I am not making this up but to my biggest amazement we were called after about 3 minutes being there. Connor had his weight, temperature, blood pressure and oxygen levels checked and after being in a small room for about 20 minutes we were assigned a room on the Pediatric ER section.

Now in this room we spend about 4 1/2 hours and the live safer came in the form as it being a very spacious room with a TV! During our stay Connor had some blood taken from his arm, an x-ray was taken of his chest/port and a nurse tried to get the port working by flushing it and pulling for blood. No luck there but the good news was that the port was not dislodged! It is still in place and looking beautiful according to the ER Nurse (who by the way was wonderful). What also took long was the wait for the TPA, the medication they use to try and break a blood clot that can form inside the port. When it finally arrived the nurse told us the direction on this drug list that you have to wait for 120 minutes to see if it works, which was a real downer to us but then the Nurse also told me that she will check the port every 30 minutes and will try to get some blood flowing. So at 9:15 PM she came in and hooked up the syringe and there was blood!!!! I have never been so happy to see blood flowing from my baby :):):) I asked her if I could hook up the Methrotrexate and then leave and she consulted with the ER Doctor who said that was fine with him as long as I was comfortable with it ... So after another 30 minutes we were in the car and heading home. The only stop we made was at a Drive-Thru.

It is now 11:30 PM and we are all dead tired but overly so that we are also all wide awake ...

I want to Thank everyone who has been so wonderful to me on FB today. I tell you when all you have is your phone while sitting there for hours it was great to see support and also read some posts that made me laugh!

My husband was an Angel because he skyped and talked to the boys this morning when Connor first had problems with the Port and then we texted all afternoon while passing time ...

Another set of news is that I am loving to blog again and you will have to wait now to hear why I truly did not blog to much lately :)

Hugs,

R A C A

For my sister :)

This post is for my lovely and beautiful sister Beate :)

We talked on the phone yesterday and she told me that I am not keeping up on my blog anymore to which I replied that for one I had more down time in the Hospital BUT most importantly there is not as much happening anymore and I figured our day to day life was not exactly that interesting :)

So now I will write today and see if I can get back into the swing of things :)

Ron left again this morning for work but it will be a combination of work and play since his trip is taking him to Anchorage to see Niki & Harlow :) Anchorage is actually considered International due to the distance they fly over the water. I am sure some of the lower 49 States might make a joke out of this and truly do consider it another country ... or was that Florida, Texas & Arizona??? JUST KIDDING :) Which does remind me I was so so so tempted this morning to write my 5 cents about what I think of Arizona and the Anchor Babies Idea on facebook but then decided I am pushing enough buttons and to keep my mouth shut this time around :)

The Boys and I wish we could have gone as well to Anchorage and there even was room for us but Connor is suppose to have his infusions tomorrow. I am now saying 'suppose' because when we came home this afternoon we had his package of medication waiting for us but the part with his Needles, gloves, tape and other item's needed for the infusion was missing. I do have his Solumedrol and Methrotrexate waiting in the refrigerator but hope that the rest will arrive in the morning. I talked to the Medical Company and they will overnight it. Shipment PLEASE make it because I would love to have a day 'off' on Friday so the boys and I could go to the Farmers Market.

As for today I was going to take the boys for a surprise outing to a Splash Water Park. I looked up the Address online but there were no hours listed. Well, we arrived at 10:45 AM to find out it does not open until 1 PM. So we switched course and instead headed to the movies to see 'The Karate Kid'. I send a txt to Miss Jennie to see if she was up for a short notice trip to the Movies with her two precious boys and she amazed me by making it with a 1 hour warning :) So 'Hat's Off' Jennie for being as spontaneous as me :)

The kids all loved the movie and I thought it was good but it was much more violent then the original I remember from the 80's. To watch 11 and 12 year olds beat each other up like this was pretty scary to watch for this Mom :)

After the movie I made another attempt at the Water Park since my boys were wearing Star Wars Swim Shorts all day :) but when we arrived the second time around it was only to find out it was filled to capacity and now closed to new comers. Can you guess that my two dumplings were a bit disappointed? So I promised them one more movie at home for a movie night with popcorn and to my luck they picked one of my favorites again 'Blind Side'

Now they are in bed and I am heading that way as well. I think my husband left me a gift in the form of a sore throat and headache ... :) the good news about this is that now I can't yell that loudly at our boys or dogs. Yes, our puppies have been pushing my buttons as well lately by getting up each morning between 4 AM and 5 AM and then barking nonstop at some unseen enemy in our forest behind the house. Not to mention I found them with another deer leg with hoof attached and some furry thing like a squirrel in Apples mouth. Way to yucky for this City transplant :(

Goodness, for someone who thought she had not much to say I think I did my job well :) Hope my sister is happy with me :)

Hugs,

R A C A

All for Research :)

Today's time was spend mostly on the phone with calls that concern Connor and JDM.

First I got a call to set up his medication delivery for this week and then I also got to talk to Michelle again who is Dr. Soep's Nurse and who I feel at times I talk to about three times a week. She is such an Angel helping us with any questions or concerns that come up. Right now our focus is back on getting Connor set up on a new schedule for Therapy. When I talked to Dr. Soep last Friday we both agreed that the new pain Connor is having in his knee's might be a factor of the interruption in therapy he is having. It has been fun to have an almost one month break but now we do feel it comes at a price. So today I faxed 18 pages of Therapy Evaluations to Memorial in Colorado Springs and I hope that will jump start them to call us back with a schedule :)

And the third phone call came from the lovely Dr. Rider, who we have not met yet but who is very pleasant to talk to on the phone. It looks like we get closer and closer to plan our trip to Washington D.C. to meet Dr. Rider in person and enter Connor and Alexander in the Twin Study, plus Connor will enter the Myositis Study as well. The biggest obstacle on us planning or setting travel dates is the fact that Connor is still Anemic and this will need to be resolved before we go since there will be a lot of blood drawls when we get there. It sounds like the trip will cover three days on location and if everything goes as planned and we get some good reports from Chicago when we go in July then we should be able to leave in September or October for Washington D.C. This means that I have to get busy and get all the paper work in order for our trip which includes all medical reports from four Doctors and also reports from one year prior to his diagnosis.

Connor, which I so admire about him is very excited about entering any research that could possible lead to a cure. Once again he is a real trooper :) and he is definitely a son of ours since both Ron and I are all for science and progress.

Those close to us know that we have traveled the road of INVITRO, FET and AI before we considered Adoption and I am not to ashamed at all to admit that we donated the one Frozen Embryo's that we had left to Research. There truly are no taboos for me and this is why you will never here me trying to stop something like Stem Cell research. Ron and I are also glad to be on the Bone Marrow Donor List and when it is my time to pass then I truly hope they can use every bit of my body to help someone else or use it for research. This is not just about finding a cure for JDM but also for anything that brings pain and suffering to others. No one deserves to deal with a disease that limits them or cuts their life short ...

I know I am oh so controversial but then admit you still love me :)

Oh, and I am also happy to report that as of today the sun has arrived in Colorado and we sure hope we get to keep her!

Love,

R A C A

P.S. The Pictures today are about the painting we received from one of AA's First Officer who flew with Ron a few months ago. Ron told him what he had in mind as a painting over our fireplace and this was the final outcome :)

Musing again......

So I changed the look of our Blog today and I am not sure if I like it yet but needed some change ...

On the right hand side there is now a list of the medications Connor is getting as of June, 2010. It has changed a bit plus I get asked quiet a bit what medication Connor is on. Today I read some messages on the CureJm Message Board and it seems there is such a broad opinion on what medication works for JDM and which don't. The common thread seems to be that it is a combination that helps but also that there is NO blueprint on what works for each child. One post however had me surprised once again was a Grandparent posting that her granddaughter is getting Chemo three times a month and since this is the strongest drug out there why is it not helping? I think people are always impressed when the word 'chemo' is thrown around as if that means the 'big guns' are out and now it either works or the fight is over. I absolutely disagree with this because in Connor's case it was never 'just' the Chemo that is making him better but the combination of several powerful drugs, which are for example Solumedrol and Prednisolone (Steroids), Cyclosporin, Methrotrexate (Chemo) and IVIG. I am sure even if you have cancer you do not rely on just Chemo alone so why would it be any different with JDM?

If there is one thing I am 100% sure off then it is the believe that Connor is only doing better because we are attacking his disease with everything his body can handle and there was never a question for us to try a little of this and a little of that. I saw and read about to many kids with JDM who have no long term success by not fighting this disease more aggressive then it is itself. Granted we are not a success story yet but Connor is improving by bounds and leaps after 6 month from being diagnosed.

Which brings me once again to us being so grateful that Connor has the right Doctors on his side!

So and for those of you that are enjoying some summer heat right now I am asking you to remember us here in Colorado who woke up to temperatures in the 30's this morning! Yes, once again it is June but the memo did not make it to this Western State yet :)

Hugs,

R A C A

A taste of summer ...

I can’t believe it is already Saturday! This week has been busy and is going past us at a very fast pace. On Tuesday the highly anticipated arrival of the Tossell Family took part and they surprised us with one of the fasted travel times one can have from DFW, TX to Lake George, CO in a car traveling with 6 year old twin boys. Connor and Alexander woke up that morning asking about every hour when they would arrive and I was glad for Heidi to txt us continuously about the progress they were making :)

David, Heidi’s husband, had to leave again the next day for work so he took a flight back and Ron left on Thursday morning to go on a 4 day trip. This means our house right now is occupied by two Mom’s and four six year old boy’s :)

So the last four days we have been staying fairly busy with play-time’s and the usually challenges family life can bring :) Two days ago I am sad to admit was not the best day for the boys and I and we were on confrontation mode about all day long. What was sad was not the fact that both boys knew how to push my button in the fact of talking back and not listening to just about anything I said BUT the way I had just about no patience for it all ... so I was glad that day was over in the end and yesterday plus today was so much more peaceful and pleasant all around.

On Connor’s JDM up-date the big event this week was his first experience with getting a Methrotrexate Injection instead of an infusion and also the fact that we skipped his Solumedrol Infusion this week :) We are so excited about cutting back on the Steroids and I wish I could tell you now that the injection went well but I have to admit that he ‘hated’ it with every fiber of his body and mind. I went and numbed the injection site with Lidocane about 1 hour prior and our Nurse had no problem ‘poking’ him BUT when she pushed in the Methrotrexate he screamed and cried for the whole duration of about 15 seconds and about 30 minutes after. Needless to say I am not looking forward to the next one two weeks from now. Lucky for Connor he will have it in the form of an infusion again next week :) There is one other change that has occurred this week on a continuing basis and that is Connor’s complain about pain in his knee’s. Not sure why all of a sudden this is an issue but after talking to Dr. Soep we will just keep an eye on it.

Today was our last day with the Tossell Family and it will be sad to see them leave Colorado. Why all pour friends are so hesitant to move to beautiful Colorado is unimaginable to me. Who would not prefer temperatures in the 40’s and 50’s in June to the 90’s and 100’s that Texas has????? :)

Also, today, the boys were invited to a Birthday Party at the Zoo and they loved every minute of it. The temperature all day was in the 50’s and I think it was the best weather for the animals at the Zoo. They were all out and very alert and other then Connor and Alexander loving the time they got to spend with their little friends they were all over heels that they were allowed to touch a snake.

I am also very glad to say that our friends in Chicago got some good news yesterday and we are so happy for them and also selfishly I was needing some good news and it made my day in every way.

Hugs,

R A C A

Aftermath of our IVIG # 4

Well, I posted my blog on Thursday the day of Connor’s infusion at TCH but posted it before the day was over.

We came home that afternoon and after I posted on FB that I am ready to sit back and have a glass of wine, my wonderful and precious friend Caroline came over bearing bread, cheese, Strawberries, Chocolate and the best of all the gift of an evening relaxing and having a fun Girl Time and Conversations :)

THANK YOU once again to my amazing friend for taking the time and for her husband to take over meal and bed times with their cute twin boys :)

Friday’s big event was Ron coming back from Paris and to the boys delight he was carrying gifts in the form of very tasty sweets and cookies. There is a lot I like about France and the Food and Pastry selections are high on my list. Ron will be home for 5 days this week and then he will start going on 4 day Caribbean trips and also one Anchorage trip so far.

Saturday I had a wonderful visit from a friend I made when I was still part of the Lake George MOPS group and it was a true treat for me to hear from her since she has just returned to Colorado after spending one year in Germany. Oh, and Anne if you are reading this I have to tell you, you have me craving Yogurt ever since we talked! :)

Saturday to Sunday Night was our little hick-up with Connor. He seemed to do really well after his latest IVIG Infusion on Thursday and so it came to a big surprise for us when last night at 2:20 AM the wireless doorbell we had installed in our room with a push button next to his bed was going of. We installed this chime at first when Connor was released from the hospital and after we felt comfortable enough to move him back in his own bedroom. Not once has he used it and we told me he should only push the button if something was wrong and he needed us there asap. So we both, Ron and I, got up and went to his bedroom where he was sitting in his bed complaining about pain in his knee. I went and got him some tylenol and Ron laid down with him for about 30 m in until he was back asleep. About 1 hour after this we heard Alexander calling ‘Mama, Papa’ through the house so up we got again only to be told he could not sleep and was worried about bugs. So here Ron went again and laid down with Alexander for about 30 min until he was back asleep .... Can you tell that my husband has more patience at night time? I personally need my sleep and don’t do well when it is interrupted and if that goes well then I have quiet a bit of patience during daylight hours - ha ha.

As of today everything was heavenly. Colorado weather was at it’s best. We got up in the morning to beautiful blue skies and warm enough temperatures that we were able to have our Belgian Waffle Breakfast on the Back Deck. The boys got to feed Chipmunks afterwards while I got to finish my Book ‘Sarah’s Key’ which was heartbreaking to read but also one of those books that will stay with you for a long time.

For lunch we all went on the 4-Wheeler to have a picnic in the National Forest next door and then had some fun getting wet in the sprinklers Ron had set up for the boys. So all in all a peaceful, fun and relaxing Sunday ... just what we needed :)

Hoping your weekend went as well as ours and now we are gearing up for a busy but fun week a head of us.

Hugs,

R A C A

IVIG # 4!

It is Infusion Day for us here in Denver at The Children’s Hospital (TCH) and so far so good :) We left the house at 5:20 AM, arrived bright and early at 8 AM and by 8:45 AM he already had his blood drawn and was hooked up to the Solumedrol. It also looks like we will be lucky again and have a 4 hour IVIG infusion even thought the bottle reads 6 to 8 hours. The nurse mentioned that since he did well on the fast drip last time we will aim for it again this time as well. I admit I am not to worried about the fast drip even thought I read a lot of posts were people prefer the slow drip due to the side effects that can happen but as with every medication that has been thrown towards Connor in the last six months he never has shown any adverse reaction so we are hoping to stay lucky in that regard. I figure Connor deserves a break somewhere and if his advantage is in having a body that can handle stress really well then we happily take it :)

We do have some news in regards to Connor’s future Medicine Schedule since we just talked to Dr. Soep just a bit ago :) His Blood Work looks pretty much the same in every way and the only small concern is that he is still anemic. We will now do the big step of cutting back on his Steroids! Dr. Soep will set a schedule of Solumedrol Infusions of every other week. If he takes well to this then we might start cutting back on his oral steroids :) As I said before I am choosing one evil over the other but I am glad when he is off the steroids! Dr. Soep will also get in touch with Dr. Rider about the possibility of him traveling east in July or August, plus she will call Memorial in the Springs about his Therapy Evaluations so we can get started on this end as well.

Some of the news are that 5 of 6 kids from our play-date in TX have now come down with something that makes them throw up and spike at a fever of 104’F. So far it started with Ryan on Monday one day after the Pool Play-Date followed by Alexander on Tuesday, Dylan on Wednesday and now Addie and Ren are down today Thursday. Ironically the only one that has not caught it and hopefully won’t is Connor who should have been the most receptacle for it since his Immune System is completely suppressed ... So much for me being paranoid :)

Wishing all of you a wonderful start into summer and for us I am hoping for a quiet weekend ahead :)

Hugs,

R A C A

Part 2 of our TX Mini Vacation and back Home again :)

Here we are sitting on an Airplane again but this time heading for Home :)

Yesterday, Memorial Day, was a lot of fun as well but I can tell you the energy levels were much lower the second day. We all slept in and then had a slow and leisurely breakfast at the Hotel. The boys and I left for the Mall the same time Ron had to leave for the Academy for his training. We met Sonya, Addie and Ren to see the new Shreck movie which was very cute and I can say the Witches were no issue at all. This time I brought the Wheel Chair because Connor was sore when he woke up in the morning but the irony is that Alexander was so tired from the day before that we actually ended up taking turns with the Chair. Connor got to sit in it about 70% of the time but had to share with Alexander as well :)

We ended our Day with meeting part of our Texas ‘Family’, Len, Angela, Alisha, Kendra & Rebecca for Dinner. Our boys by far got a huge boost of energy right before we went downstairs for Dinner and it lasted all the way through it. You all know I can talk BUT my goodness they were each going about one mile a minute. Do you know what a tightrope you walk when you have two talk active six year olds that have no care or sensitivity levels for what comes out of their mouths?

So after a restless night for two of us and a good night for the other two we are now on our way back Home. There was a 30 min delay leaving DFW due to a wet carpet in the First Class Galley but we were happily seated in Row 7 and 8 in coach on a flight that was only 2/3 full :) and other then some boredom for our two dumplings we passed this time delay easily.

Now we have one day, today, with Ron at Home and then he will be of to Paris tomorrow morning. We are glad to come home but I admit the Gypsy in me is waking up again after a 6 months break and some Ice Cream under the Eiffel Tower does sound tempting :) Okay, maybe we are not there yet with Connor but this trip to Texas opened my eyes that we are one step closer again to having part or our Life from prior JDM back bit by bit :)

...... Day 3 ...I was going to post this blog when we got home but we got busy cleaning out the garage and also taking the boys for a ride on the 4-Wheelers. The part I could have skipped is Alexander ran a fever last night and was hallucinating or sleepwalking on top of it. Now this morning he is doing much better with a low grade fever of 99.8’F.

As to some future planning I got to talk again to Dr. Rider today and depending what Dr. Soep say’s tomorrow for Connor’s fourth IVIG we might be making plan’s soon to travel to Washington DC to enter Connor and Alexander in the Twin Study and possibly as well into the Myositis Study.

You all might wonder now what some of my posts have to do with Connor and JDM and I guess I keep writing about our Family Adventures because this is a look into how much progress or not we are making to getting back into our old life :)

I wish I could put in words how wonderful those two days were for us here in Texas! We had a precious time and it once again showed us how blessed we are with having this amazing network of friends and family.

So Thank You to all of you that took time for us while we swooped in :)

Hugs,

R A C A