Part 2 of our trip to TCH

As promised here is the follow up to our stay at TCH today. I had a conversation with Ron right before Connor finished up his IVIG and we concluded that the 8 to 10 weeks of castings on Connor's feet and legs will be a challenge for us in the coming two months due to him being all excited about the up-coming Halloween Weekend, our up-coming trip to D.C in two weeks ending with our trip to Germany in December. Halloween we decided was not that important and can be done in his wheel chair as well as our trip to D.C. but neither of us want to travel to Germany with Connor wearing casts.

I went and saw Holly and told her about our worries and she went and got Dr. Biffel to talk to us again. Luckily Dr. Biffel told us that Connor has been dealing with this for so long that two more months of holding off will not make that much of an impact and that we should call Holly when we come back from Germany and have the casts put on then. Trust me when I say we were all happy to hear this! Connor especially because he was very worried about his future Trick or Treating.... :) but he is not off the hook at all because as soon as we got home I put on his Boots for his feet and told him this will be it every time we are home and through the nights. He was once again not happy but then what has been pleasant about his journey with JDM?

Now there is the part that is still up in the open and that is the fact if the Casting is not working the next step will be surgery for Connor. Now I have no idea what this entails as of yet and have never heard from anyone that had this done. I guess I will put this aside until we know if the cast on his legs will work....

I also have to make an appointment with a Pediatric Dentist who has Orthopedics experience as well, thanks to Connor growing a tooth way behind his baby tooth on the bottom. It is not just right behind it but pretty far back. Dr. Soep looked at it and said that she wants to have a Dentist look at it but needs him to talk to her before he does anything.

We are all happy to be home now and we hope that we can catch up on some work and school tomorrow. We tried to do some school work at the Hospital but Connor was feeling so sick and tired that he did not even last through one Video and Alexander did okay but was more unfocused then at home. I on the other hand have to hunt down some more Medical Records for the boys.

We truly are glad to go for the Twin Research Study but I am glad when the hunt for Medical Records is over. I just don't understand why it is so difficult to get Records or why some Medical Offices don't like to cooperate as well. It's not like we don't pay for them. So far it cost us close to $300.00 to get them...

Wishing all of you a fun and safe Halloween Weekend! It is our boys favorite Holiday, and this year I am being treated to a Haunted House called the 13th floor in Denver, CO, thanks to my friend Jennie who is the fearless one of the two of us.

Most likely I will be back to posting on Monday :)

Hugs,

R A C A

Judo & IVIG Part 1

Today we are back at TCH for Connor's 10th IVIG Infusion and after looking at how many Methrotrexate (Chemo) infusion and Shots he had up to today we counted 31.

The irony is that none of this matters much if it helps him. I know our dream is for Connor to go into remission and be medication free but if this is what it takes for him to be better, and he can not function of medication then it is still better then other alternatives.

Today however Connor does have a heavy heart because yesterday his brother had the time of his life at his first Judo practice and Connor begged me to sign him up as well and I told him that as long as he is on medication this will have to be put on hold. Of course he thinks he can do it so I also told him he will have to get clearance from Dr. Soep and Dr. Pachman, which I don't think will happen.

Ron and I also agreed that as hard as it may be on Connor it is time for Alexander to have something he can do that is completely his one. He had to watch Connor having fun with his Hippo Therapy now for weeks and this will be a nice shift in attention for him :)

So, I am back after I took a couple hours break from writing due to talking to Dr. Soep and also having Connor's Therapy Assessment Appointment. Connor, as I mentioned does not feel well today and has not felt all that good for the last couple of days. I am not sure if it is due to the cold bug he was just fighting or something else. We saw Dr. Soep early today since she is only in this morning and then has to leave for a trip. So we did not have any Blood Test Results but just from looking at Connor and how he is feeling we decided to not change anything regarding his medication. There also is still some discrepancies on how to cut back so we would like to see Dr. Soep and Dr.Pachman/Dr. Curran to be in an agreement on how to proceed. Dr. Soep also did not lift Connor's spirits in regards to him doing Judo but she promised him she would talk to the Surgery Team who does Medi Ports and see what their approach is with contact sports and a port. Her only regards however was for the port and otherwise would have felt confident enough to clear him. His neck muscles are strong again as is his core body strength. Overall I think he is stronger then Alexander who is so skinny. There still is a 4 lbs weight difference between the two and for most people that look at our boys, Connor looks more healthy then Alexander...

There was also some more upsetting news for Connor because Dr. Biffel from Therapy thinks it is time to give Connor permanent Casts on both legs that he might have to wear for up to 8 weeks so we can finally stretch his feet and leg muscles and get them straight again. They would put a stretch on his feet and we would have to come in every two weeks to tighten the stretch and get a new cast each time. This is suppose to be done today after the infusion is finished and I so forgot about the boys busy weekend of Trick or Treating! Now they told me he can walk on them and that they are water proof, but what do they mean with walk? from one room to another or walk on the street and walk bigger distances? So I need to check on this when we go back to the 4th floor.

Due to him feeling to tired and yucky today we also regressed back to him using a wheel chair in the hospital today and of course that is an option again since we have his new wheel chair sitting at home. The only complain about a wheel chair is coming from my shoulder since it is heavy to push him - haha

I was also told that this means we have to travel to Denver every two weeks for a while and then I am thinking we have such a busy season coming up with Halloween,, traveling to D.C., Thanksgiving, Germany and Christmas and all this in Leg Casts???

But to ask them to delay it until January means putting progress on Connor's feet on hold for two months...

I also asked them about the Botox Injection Dr. Soep mentioned that have been used in the past to relax the leg and feet muscles but Dr. Bissel said she rather not use them on Connor even thought she used them frequently on her little patients with Neurological Issues. She is to worried about what the Botox might do to Connor's muscles since he has a muscle disease and it has never been done before in her department. So to make it short it is a risk they are not willing to take and i am neither after talking to her :)

Who ever says there is a break in our life when it comes to JDM? This disease does not cut us to many breaks and it never rests for sure.

Well, we are finishing up our IVIG and will now head to the Therapy Center to talk this all over again and now that I talked to my lovely husband I can brainstorm some more ideas with Holly, the Lady who wants to put the cast on Connor's legs today.

Part 2 will come tonight!

Hugs,

R A C A

Papa, Dad, Daddy.....

It is interesting but not surprising that we women and mom's are the ones that are more vocal and outspoken when it comes to talking about life and our kids. You look on FB and you see mostly women chatting away and 'yes' there are men posting to but not quiet as much or as frequent as we girls do, with a few exceptions of some of my friends husbands - haha

Now there is one group of friends on FB that is very busy posting everyday and this is the JM MOMS group I am glad to be a part off. We are posting questions, frustrations, our fears and hopes, Therapy Up-Dates and last but not our kids Infusion Schedules. We Mom's in this group know how important support is and we know that the reason we can spend so much focus on our kids is due to having husbands that have our backs at all times or family members that live close by and help out.

I get a lot of credit or remarks on postings I do on the blog and FB about what a seemingly good job I do in taking care of Connor and Alexander and I need to move the spot light to my wonderful and most supportive husband. I am able to stay home, home-school and take Connor to all his therapies, doctor and hospital visits because I have a husband that works hard, works even over-time so that the boys and I get the care we need financially but also emotionally because who do you think I really vent against when I get frustrated and fearful about our future? Yes, my lovely husband gets it all. So THANK YOU Ron for being there for us from the get go and never faltering. Life has thrown us a curve ball and if it wasn't for JDM you should be retired right now instead of working harder and harder. I love you and if anything JDM has shown us how strong and resilient we really are!

So all of you might not see my husband post much on Facebook and you might not hear much from him but please know he is the foundation of our family and we are doing this all as a team. I think we are all pulling our weight in fighting this battle and so are the boys who by now know what they need to do to make this family run as smoothly as is possible.

I truly appreciate all the kind and sweet words of support you post but please remember this is not just the boys and I but also Ron's doing. You just hear me all the time because I am the one that reaches out with my words.

Thank you all so much for being there for us!

We might be the Fortress but you are the pillars we lean on. We are the core but family and friends keep us stable!

Love,

R A C A

Subluxated Ribs or popped out Rib Head :'(

I and the boys always love having Ron home no matter what but for the last four days I think even our House would love to have him home.

On Saturday I started feeling a pain in my back and by Monday Morning it was so painful that I loaded up the boys and drove us through some miserable weather to the Chiropractor. Let's just say we left in heavy rain, saw icy rain and drove home in snow.

Anyway, it turns out I popped a rib head or the correct term I have a 'subluxated rib'. Our Chiropractor made a ton of adjustments on me and the boys compared it to sounding like making popcorn. I wish I could say the pain went away but for now it is still very intense and painful and that is why I know our house is suffering. I am barely standing or sitting up and the only part my body likes is laying down. So no laundry, cooking or vacuuming right now - haha. I am glad to have two boys that are very easy in regards to food and for the last two days we had yogurts and puddings for breakfast and soups for lunch and dinner.

I am once again glad for home-schooling because the boys do well with me watching them work on their workbooks and watching the teaching Video's online.

I am now going back to dreaming about pain medication that would work (Hydrocodine is not even cutting it) and I am grateful I am not having visitors right now. It is a good thing for them as well since I be tempted to put them to work for some dusting - haha

Hope your day is more productive then mine.

Hugs,

R A C A

Wishing upon a Star....

Connor told me tonight that if he wishes upon a star if this will truly make his wish come true. I told him that you should always wish upon a star and time will tell if your dream comes true and if he would tell me what his wish is. He said that all he wants from now on is to be able to stop taking his medicine......

Now Connor has been so brave and such a hero when it came to taking all his past treatments, tests and medicines and we know it is hard on him because daily he gags when taking all twelve of his medications but never does he complain or put up a fight. He knows it is what he has to do in order to get better. Now it has been nine months since he has been doing this daily and at this point there is no end in sight.

He could have wished for JDM to disappear of course but to his six year old mind those syringes filled with bitter medicine and the pills he needs to chew are his biggest daily battle.

So,

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you

If your heart is in your dream
No request is too extreme
When you wish upon a star
As dreamers do

Fate is kind
She brings to those who love
The sweet fulfillment of
Their secret longing

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true

No more Medicine is Connor's Wish and mine is for JDM to become a history. There is so much pain that JDM brings in so many forms to our children and those who love and care for them and I am once again so grateful that we have warriors in the form of amazing Doctors out there fighting the fight on the front lines. Now there is also progress in other strange ways of bringing out the name of Juvenile Dermatomyositis.... Just last week on the show 'House' it was the first name listed when they mentioned Autoimmune Diseases. Who would have thought?

I know the more exposure we can get better it will be.

So Thank You to all my precious family and friends for knowing so much about JDM and also for talking about it.

Hugs,

R A C A

Make A Wish and Disney Cruise Line

I am never out of words even if I claim it sometimes but this time I am faced with a new challenge and that is how can I put everything that is on my mind in one blog entry?

I will skip my experiment with Southwest this time around but will get back to it soon in another blog :)

There is one thing I like to say in the beginning and that is the fact that Make A Wish and Disney are a potent combination and that these last 7 days were a complete dream come true and it was magical and wonderful from start to finish.

The boys and I started our trip on October 15th by driving to Denver to spend the night at the Hyatt Plaza Airport Hotel. If you ever need to spend a night close to the Denver Airport I can tell you this is the place I would want to stay at. It was beautiful and the personal was extremely attentive from check-in to check-out. We got to leave our car parked at the Hotel and we took the shuttle to the airport in the morning of the 16th.

This is were I will add our Southwest trip at a later point :)

We met Ron at the Orlando International Airport and I have to say I am used to a lot of Airports and for some reason I forgot how busy this one was. It was almost as busy as Las Vegas only with more children in the mix :)

Ron came in from Miami and was battling a head cold along with an ear ache. This time we spend the night at the Hyatt Airport Hotel which was as wonderful as the one in Denver and once again Make A Wish had everything in place for us to not stress and worry about the next days itinerary for our transfer to Port Canaveral.

We ended up at Port Canaveral by 12:15 PM on October 17th and we were right away guided to the red carpet entry for check-in. After some pictures with Minnie Mouse we were on board the Disney Wonder eating lunch by 1 PM and the magic did not end until we were home again on the night of the 21st.

For one there was Brent, who was Disney's Make A Wish Host. This Gentleman who was on the cruise along with us and 4 other families spoiled us every single day with the most yummy foods delivered to our room, information packages about our destinations including excursions. He brought gifts for the boys and set up an private photo session for all of us Make A Wish families with the Ship's Captain and Mickey Mouse as well. The boys loved the fact that the Captain told them that the ship was in charge of not one Captain but four! Himself, Captain Mickey Mouse, Captain Jack Sparrow and Captain Hook. We got to meet all of them and I promise you the boys never stopped smiling, even in their sleep :) We only met the other four Make A Wish families during the Photo Session and they were all lovely but interestingly we never crossed path again.

I am truly a huge fan now of Disney Cruise Line and there are so many ways why I think they are amazing. Yes, they are experts of course in entertainment but it is the level of quality that struck me the most. The shows were spectacular and we did not miss one. Alexander was unable to close his mouth through all of them that's how much he was in awe. The Deck Parties were fun even thought they were pretty crowded but still all four of us were dancing away. Most of the time it was Ron and I dancing while we carried the boys :)

We even got to see the movie Secretariat which was great:) Ron and I might have liked it better then the boys but they still sat through it for two hours :) Which brings me to the other part about this Cruise. There is lots of time for the Adults as well due to the amazing set-up of the Kid's Clubs. There was the Oceaneers Club and Lab which our boys loved. According to them they did not get enough time in there but we still managed an hour here and there. It is fully supervised with great activities and every child wears a bracelet and as parents you receive a pager in case your child needs you. We got paged twice from Connor who had fun but after a while missed us. Alexander on the other hand did not want to leave 'ever' :)

If you have been on any Cruise before then you know how abundant the food can be. There was food everywhere and if I thought I had made some strides in working out and keeping in shape then I can tell you it all went over board on that Ship. You had four Restaurants but also unlimited Pizza, Hot Dogs, Burgers, Fries and Ice Cream on the pool deck at any time. I did get up early the first morning and went running on Deck 4. Now it says if you run 3 loops around the ship you run one mile. I can now do three to four miles on the Elliptical but only lasted for two loops on the ship. There truly was not to much traffic since I only encountered a total of 5 other runners :) Now morning number two I went to the Fitness Club at 6:15 AM and it still felt wrong to even be there - haha

We had our first Port Adventure In Nassau and had to leave the ship at 9:30 AM for our trip to the Blue Lagoon Beach Day. Now a huge part of Connor's wish was a day at the beach and this part of beach was right out of a post card. Beautiful Sand and turquoise water ... gorgeous! We even got lucky and got a tour of the Dolphin encounter next door where we met Jack the Dolphin, the 'actor' who played Flipper :)

So and then the next day we went ashore at Castaway Cay, Disney's Private Island. You have to look at the photo's we took to really get a feel for this Island but it is right out of a movie, beautiful and peaceful. In Disney's fashion this is where they keep the Flying Dutchman and this is where Jack Sparrow came out to spend time with the kids and Adults. I have to say that of course everywhere on board and on the Island you could take pictures with some of the Disney Characters but the part I loved the most was the fact that they did not just pose but also talk and interact with the kids. jack Sparrow probably talked for a good 5 minutes with the boys on the Island and later again on the ship!

On Castaway Cay we had some great time swimming, playing and shopping with the boys but it has a special spot in my heart because Thanks to he Disney Club on the Island, Ron and I even got some time for ourselves. We had free bike rentals Thanks again to Disney, and so we took off to the Adult only section on the Island to have a yummy drink at the bar and then take a swim in the crystal clear waters. PURE HEAVEN!

That night at sea we had the Pirates Party on Deck followed by Fireworks. Disney Cruise Line is the only Cruise Line in the world that is authorized to have Fireworks and it showed when we saw that we were trailed by two other ships who might have benefited from the show as well..... :)

As much as I loved both Shore Excursions I so enjoyed the day at sea!!! How great it felt for all four of us to sleep in and then just relax all day playing and going with the flow. The boys finally got to swim in the Mickey Mouse Pool that day and spend some more time in the Kids Clubs.

The only sad part of course was the part of having to leave the ship and we are so grateful to everyone on board who made this trip so special: Witt from Indonesia, Yayan from Thailand and Luca from Italy who were our serves throughout the trip. Once again Brent who was just amazing and also Thank You to a passenger and family we do not know but who was wonderful to us when one of our door Magnets was taken from our door and after hearing about it bought three new magnets and put them on our door. Our Cabin Service Host was so attentive and made the boys smile with his Towel Creations and the use of Ron's Sun Glasses each night.

Now we are Home again and all of us are so full of renewed energy and hope.

I also want to just Hug Lee for taking care of our girls and our house. She is such a help for us and made our home coming so much easier on us!

Connor finished off his trip with a Methrotrexate Shot and unfortunately both him and Alexander also caught a bad head cold. Even thought there was so much precaution on the ship with Disinfectant Wipes and Soaps by the last day a lot of Children were coughing and having runny noses. This was the first time both of the boys were exposed to lots of people in the airport and on the ship for an extended time so I am hoping he will shake it off soon.

Hugs,

R A C A

Make A Wish Vacation on Disney

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Disney Cruise Line Creating More Magic at Castaway Cay

First Day out of seven ... :)

So we are officially on the go and the boys and I just checked into the Hyatt here in Denver.

I so want to Thank everyone for their well wishes for our trip.

For one Lee Dukes is an Angel in every way to take over and watch Apple and Tasha for us and keep an eye on our Home while we are gone. She has been heaven send and it is such a comfort to have our girls staying at home while we are gone instead of having to board them.

I also want to Thank the wonderful Thorpe family for their amazing send off and for all the wonderful advice about our Disney Cruise. They are true Disney Veterans and I feel I learned so much more from my conversations with Amy then I did from the books and you all know how much I love books :) of course my boys loved to hear from them as well about the Mickey Mouse Ice Cream that will be waiting for them and they have not stopped smiling since getting the news about all the ice cream and pizza that is ready for them to eat :)

Our Day today started early 'Thanks' to my dumplings who thought we should wake up when it was still dark outside so we could leave for our adventure. They had to hold out because for one I had to add my last touches to our packing but also they still had some school left before heading to Gateway Elementary for their reading assessment. The assessment went OK but as we knew we still have quiet some catching up to do. Both, Connor and Alexander, improved from their last assessment and the best news for me was that the teacher giving the test said she will help set up a program to help us out in any way possible for them to catch up. She said there was quiet a bit the school offers in a situation like ours so I left the meeting feeling much better.

So, and now we are settling into our Hotel Room and it is just beautiful. Lot's of room and since it is the start of our vacation the boys are already watching a movie on the large flat screen TV. So far we were offered a tour of the Hotel and received a phone call to see if anything was needed. It is all very touching and 'Make A Wish' truly is making a dream come true....

I am not sure if I find time to post tomorrow and I am pretty sure I am not signing on while on the ship but as you know there will be 100's of pictures to show when we return home :)

Hugs,

R A C A

Miami Photo Book

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Ready for Departure :)

It is Thursday afternoon and the boys and I are as ready as we can be for our Departure to Denver tomorrow :) There is a lot of excitement in our house today and I hope the boys will catch some sleep before we truly get on the ship on Sunday :)

Tomorrow we will head to Denver for the night and then leave on a morning flight on Saturday towards Orlando. Now this will be a very new experience for the Smith Family in a way that we have traveled on pretty much every major airline there is but have never set foot on Southwest before. Make A Wish booked us on Southwest and we will be heading from Denver to New Orleans (which would be wonderful if the layover was long enough to catch some yummy food :) but we only have one hour and a half before continuing on to Orlando. We will arrive in Orlando around 6 PM and then check into a Hotel for the night before taking the Disney Shuttle on Sunday Morning to the Port. If all goes well we are hoping to be on board of the Ship by 1 PM :)

Now Ron will have a bit of a different intinery because he is leaving for Lima, Peru tonight and will come back to Miami on Saturday and then fly up to Orlando to meet us. So he has to wait a bit to get the whole Southwest experiment :)

Today Connor got his Methrotrexate Shot and the timing will be for us to be home next week for him to get his next shot on Friday. This will just be one day late and I checked with Dr. Soep who said it will not be an issue. Today's shot was just a tad more challenging because we can finally see the effects of cutting back on the Solumedrol Infusions and Connor loosing some weight. Especially around his tummy and this was the cushion we loved for his Chemo Shot ... well, it still went fine and no issues so hopefully we can keep using his tummy.

If you are one of my many FB friends then you know I am going to take a break from posting for a while. I truly love FB and the fact that it lets me know what is happening on a daily basis to those of you that are like family but the more friends I added the busier it got and it is just taking to much time away right now. I will come back at some point but most likely change my settings quiet a bit :)

Wishing all of you a great weekend ahead and a good coming week. I am sure we will be offline during the cruise ....

Oh, and if you are curious I did post an Album from our Miami trip here on the blog.

Hugs,

R A C A

Back to Life but not to Reality :)

A wonderful friend of mine mentioned to me a week or so that she knows our life is getting back to normal because I do not write in the blog as much or as frequently and she is so right in that regard.

I said it before and say it again that one out of many things JDM brought to the forefront is how much it changed our life’s to the core when it came to how we lived day to day. The boys have been brought up in the same spirit as Ron and I lived our life’s and a huge part of it is the fact we love to travel and make the most of Ron’s Job as an Airline Pilot. Especially now that he is so close to retirement. I lost count on how many times the boys have been on airplanes since we had them and we used to keep a Log Book for them but stopped using it when we reached 30 flights or so. They had a Passport since age 1 and used it more then a lot of grown-ups I know. This is not better or worse but it is who we are and what we want for them growing up. A knowledge in places and people, something I believe they can not learn from Books alone.

We looked so forward to this month of October because we knew it would bring a breath of what and who we are back into our life and it started with Ron being transferred TDY to Miami for the whole month of October. It is also the month Connor is getting his wish come true in the form of a Disney Cruise. We will leave for our Make A Wish trip in just 3 days from now but right now I am writing this blog entry on our flight from Miami back to Denver. We spend three heavenly days in Miami Beach with Ron and the only time we were reminded of our enemy called Juvenile Dermatomyositis was the two times a day when Connor got his total of 12 medications, seven in the morning and five in the evening. Of course I also feel JDM when it came to preparing for our trip and making sure we had the right amount of medication to carry us through this trip and now coming home and getting all his refills for our next departure. We also have his Methrotrexate Shot on Thursday before leaving Friday but at this point and time this is an evil I can deal with if it gives us back the core of our life’s which is traveling.

Thank You so so so much to my wonderful and amazing husband who does everything in his power to provide for us and getting us back on our feet. He made this trip to Miami possible, and hearing Connor and Alexander laugh almost nonstop while playing on the beach or swimming in the Hotel Pool was magical. Of course I am also not denying that playing with our boys without a worry and timeframe and also having Mimosas at the Pool was hands down the best Therapy I have ever had!

I know not everyone reading this can identify and not everyone that knows and loves me understands complete how much it means to me to be able to be on the move. I truly love the home and friends we have in Colorado and I know I am more content and a better friend when I get the chance to go somewhere as well.

I have to say I feel bad for not keeping an up-date on Sandy and Naoma Morgan on my last two blog entries. Naoma is doing very well and recovering nicely when I last talked to them before we left for Miami. I hope all is still going very well when I talk to them tomorrow! I might not always mention everyone that matters so much to me and my family but so many of you are on my thoughts all the time.

Hugs,

R A C A

P.S. We made it Home by 10:49 PM and the boys were asleep within 20 minutes of our 2 1/2 hour drive home. I was glad to see it was a ‘warm’ 48’F in Denver when we arrived but had to put gas into the car in Divide which was a chilly 30’F.

Thoughts and Compassion needed ....

I am truly on my way to bed but wanted to write a note about something my wonderful friends have been dealing with and that still seems to be so misunderstood by many.

Our friends Heidi and David have two beautiful twin boys named Dylan and Ryan who are 6 years old and just three months older then Connor and Alexander. In the eyes of those of us who love them they are of course absolutely perfect in every way even thought they are both Autistic.

So many of us truly take simple things we do with our children for granted and how I wish for all of you to catch a climbs of a day in my friends life to see what their 'normal' is like.

Today my heart broke a bit when I knew that this morning Heidi was attempting to take Dylan on an airplane from DFW to LAX to surprise her Mom and have a nice little vacation there. I was anxious to hear about how it would play out since neither of the boys has been on an airplane since they were babies and it seemed at first all went well when Dylan got through security and then walked around the airport happily. I can only rely a bit of what happened but Dylan had an extreme reaction when boarding the plane and it came to the point were my friend told the Flight Attendant that they will need to get off the plane.

Now how often have you taken your kids on a plane and your only worry was if they might fuss a bit or cry? Can you imagine buying a ticket and then having to abort your trip?

How often have you taken your children to the movies without a second thought? One more of many things my friends have never been able to do...

So tonight please think of them and remember there are no guaranties in life and if you see a child act up in public be careful before you judge and also think that this could be you and your child. Luckily today there were no issues from others and from what Heidi told me the Flight Attendant was really great and helpful.

Life can change in a heartbeat as we found out with Connor so if your child is healthy then be grateful and know that there is never a guarantee, but no matter what happens to your child it is and always will be perfect and the only issues at times come from those looking in from the outside.

We so love the whole Tossell Family and Dylan and Ryan will always be one of the best friends Connor and Alexander have. Truly our life is richer for knowing them!

Hugs,

R A C A

IVIG # 9 at TCH Sep. 30, 2010 and GNO

By now you all know I do NOT like getting up before the sun makes an appearance but for Infusion day's we have to leave the house no later then 5:30 AM.

Yesterday was special in many ways because the boys and I got to pick up Ron at DIA who came in from Santiago, Chile, and who spend the day with us. It was not easy for him as he had already been awake for over 24 hours when we picked him up and of course the day had just started here so he had a while to go until he could go to bed last night.

Connor was so happy to see that Amy was working who is hands down his favorite Nurse at TCH's Infusion Floor. I said it before and I say it again that we just love Amy and it is 100% true when I tell you that a Nurse can make or break the day of a child or even Adult.

Connor never even blinked when she accessed his port and the rest of the day was smooth sailing. He started with the blood draw, Benadryl and Tylenol, then the Solumedrol, IVIG and ending with the Methrotrexate.

He was feeling a little down due to the meds and he was a bit more tired then usually but still all in all it went very well.

Dr. Soep told us that we might talk about the possibility of cutting back on the Prednisone after our next IVIG visit and after the Cruise. We do not want to 'rock the boat' right now when we have so many fun things planned for October, like a trip to Miami and the Make A Wish Disney Cruise :)

We will also have a Therapy Assessment done at TCH next time we come since Connor is not making the improvements we would like to see in his feet and legs. Dr. Soep thinks we might have to readjust our approach and even brainstorm the possibility of Botox Injections for his feet.

I had a very surprising experience today as well at the Infusion Center. The boys went to see Mrs. Patt who organizes Arts and Crafts for the children and while I sat down to watch the kids play I started talking to another Mom who was here with her two children and whose son was Diagnoses with Leukemia in April 2010.

The thing that was amazing was not the part of having a good conversation with a fellow Mom but the fact that within 10 minutes into it I was actually laughing a lot. This is a rare opportunity here but it felt wonderful and I am thinking there is more need of this in an area of the hospital were you can see so much sadness and pain.

The Mom's name was Sarah and her beautiful son who is sick is Addison. She also has a beautiful daughter named Madelene.

I am truly grateful that they were part of making this day more enjoyful.

Ron, the boys and I ended up having a late lunch at 3 PM at Chili's in Castle Rock and when we got home we were happy to find out that our Camper was selling today. It really was not as hard as I thought to see it go because we truly did not use it at all.

While Ron finished the sale I went to have a Mom's Night Out with fellow Twin Mommies in Woodland Park. It was my first visit to the Bierwerks, a new Brewery in WP and I have to say I loved it. The atmosphere was great and I am hoping that the next time we go there will be more beers brewed. They had run out of most of them so there was only a choice of two dark beers, regular and wheat. I like light beer but it was still great. So for the second time yesterday I ended up having some good laughs. The funniest part for me was when I was trying to point out where Heidelberg was on the huge German Map they had and it took me a few minutes to find it. Well, my only funny excuse was that the map showed the old borders of Germany and while I tried to use the River Rhine and the border of France as my focus point it was throwing me off that they were closer in the middle of Germany then the Germany I grew up in :)

I also met a 'new' Twin Mom who has identical Boy Twins age 5 and who used to live for a few Years in Germany and it was really fun to reminisce.

So when I got home last night I found three men in our bed snoring away so I had to carry two of them back in their own beds. I love having the boys in our bed when Ron is gone but even thought it is a King size bed there is not enough room for 4 people and one of them who wiggles all over the place each night.

Today we are catching up with work at home and running some errands. We always have to watch Connor on how he is feeling the 'day after' but so far so good. Both boys are running around outside playing in the playground and forest along with Apple and Tasha.

Wishing you all a peaceful and fun weekend!

Hugs,

R A C A