BabyShower + Girl Time = FUN and Therapy ;)

Can you actually believe that the boys and I got up at 6 am on a Saturday? Shocking I know! Well, I received an e-mail earlier this week about a liquidation sale from a Lutheran School that closed a couple of years ago and I always wanted two old fashioned school desk's for the boys. So off we went and I am happy to say I got two tables for $5 each and the boys each got a Basketball (Mr. Spalding) for $1 each :) There also was this most beautiful huge solid wood office desk that I would have liked to take home if the problem would not have been about fitting it into the Excursion (it looked like you needed a small Moving Truck), plus it also truly not fitting into our House either - haha

While my Dumplings were at first not to happy about the early wake-up call, they were smiling when they got their Basketballs and a McDonald Pancake Breakfast.

Have I mentioned on my Blog yet that I started to log my food intake on MyFitnessPal.com? Well, I started a week ago and I have to say that I am thinking Saturdays and Sundays should not be counted! Do you know that one McDonald's Breakfast can almost cover half of your daily allowance? add to this a Mimosa, which entered my Diet later that afternoon at a amazing 203 calories for one, you can guess how well my total count went for the day :)

Today is actually a happy blog entry (and no this is not purely due because of the above mentioned Mimosa - just kidding!:) but due to a wonderful afternoon with friends. Today the boys and I went to a Baby Shower for my beautiful friend Vicki, and the afternoon was just magical for the boys and I. Jamie, who was hosting the Shower had the most wonderful setup for us Mom's but also for the kids that came along. I know my two boys thought they hit the jackpot when they came in and saw all the Nintendo and Wii Games! and they even got to finish up the afternoon with a Pillow Fight ... a dream for my boys ;)

As to the actual Shower, what can be more precious then friends who are fun, sincere and truly beautiful inside and out? add to this Mimosas (yes, there also was a alcohol free Punch), yummy, yummy foods and you have a wonderful combination. I am so happy for Vicki who will have another beautiful Baby Girl come March/April. If she was to arrive on her Due Date then she would be one day before our boys are turning 7.

Now here is a little tepid from my son's today while we were driving in the car this morning:

Connor: 'Mommy, can you please have a Baby?'

Me: 'Well, no since I love spending all my time with my two favorite boys'

Alexander: 'That's great Mommy, because I don't want you to get hurt when the Baby would come out'. Also, what if you had a Girl? that would not be so good'

Me: 'Why would you say that Alexander? Girls are a lot of fun!'

Alexander: 'No, not really, because they always think they are or want to be in charge'......

Oh well, I leave it at that. I guess he will find out later in live that there is a reason for that - haha

As to JDM news, I got a phone call last night at 9 pm and when I picked up it turned out to be a fax from Memorial Hospital. I received three pages with the Blood Work and Blood Culture Results from last weeks ER visit. This is great since I was now able to scan them in and forward them to Connor's Rheumatologists. I was surprised that someone was working in the Medical Records Office at 9 pm but I am NOT complaining :)

I hope you are all having a good weekend! The boys and I are looking forward to tomorrow when Ron will come home again :)

Hugs,

R A C A

Time at the Zoo and Happy Reading :)

I have to say I am always a bit confused when I see others brag about their kids getting great report cards when the kids we are talking about are in Kindergarten or First Grade. I so can not recall every hearing of a child failing one of those two years :) HOWEVER .... now my parent friends know my panic attacks never less about the complete disregard from my two son's when it comes to learning to read. I tried about every approach possible and even fell into the old parent trap of listening to complete strangers on how their children where reading at age 2 (okay 3 ;) and me getting frantic because my beautiful and oh so bright six year olds gave me the deer in the head light look when I even approached that subject. Now they did have the ABC's down since about age two and they knew the sound the letters made by about five but they put the brakes on my trying to put the letters together.

So here comes Mrs. Struble, our beloved Cottage School Teacher, who kept telling me I just need to be patient and that some day it will just click! Then enters my lovely friend Kim with a box of BOB Books and Between the Lion's DVDs. Now jump forward two months and I am thrilled to report that Connor is reading and hardly anything is stopping him :) Alexander is not on the same level but he is trying hard and has mastered three of the BOB Books so far.

I always wonder why I could be so laid back on Potty Training but was so stressing about reading. I guess the part of home schooling is the worry about how it will reflect back to you in regards how well your kids do academically. If your child struggles in school then you could, if you wanted, take the easy way out and blame the teachers or the whole school system. I do not have that possibility of course plus don't believe in this kind of thinking anyway. Home school or not, the parent has to be plucked in :)

So all of this brings me to our fun outing to the Zoo today. My dumplings have been so wonderful in school this whole week and I am just so proud of them working so hard that we decided to get out into the fresh air today and since we have a Membership at the Zoo it was an affordable outing as well. Now we had no idea how far we would get with Connor's issues when it comes to walking. I did not bring the wheelchair and figured we go as far as he is comfortable and even if we just visit the Giraffes it would still be a successful and fun outing. We ended up seeing the newest Baby Giraffe and getting to feed part of the herd. The best part was that the Zoo was so empty and there was a little educational part to this visit for us as well. Thanks to a wonderful Zoo Employee we learned that the average length of a Giraffes tongue is 18 inches long and that they do not like change. The exhibit was redone so the whole herd was moved indoors for the duration of the construction and when the exhibit was opened up again last week they opened the doors and to the big surprise the herd ran towards the exit and then stopped frozen in a spot when they looked at their 'new' home and did not recognize it all. In the end they all turned back around and are still indoors as of now :) I thought this tibits was so interesting!

The last five days have also been wonderful in regards to having Ron home with us. He left again today for a three day trip but will have another set of five days off when he gets back on Sunday.

Wishing all of you a great weekend and I want to Thank Monica, Celeste, Heidi, Sonya and Allison for the great feedback and input on my last blog! I so love reading others opinions :):):)

Hugs,

R A C A

At a Standstill :(

So I wish I could post that we are back to 'normal' but unfortunately we are still fighting a cold in our house and are therefor still house bound :( Connor also has taken a turn to the worse with his left leg. For an unexplained reason he is now dragging his leg and trying not to put any weight on it. I am still waiting to get a responds from his blood work and blood culture from our ER visit and I called Orthopedics and they think he needs to be fitted with a Carbon Fiber Brace.

I know there is no one in particular to blame but I so wish in hindsight I would have held back in putting the boys around other children and people for that matter. It has been so long for us trying to watch the exposure and while there is no way to keep Connor in a bubble forever I need to be more cautious once again as to what exposures we choose and which ones are worth the risk.

My one frustration comes in a way that I never thought I would voice out loud. If you know me from before Connor was diagnosed with JDM I was the first one who would have said that the more exposed the kids are to certain germs the better for them to build up there immune system ... well, you could say I did a complete 180 on this one. So here is my pet peeve for the week:

We all make certain life style decision's and I know there are a lot of people who rely on two incomes to support a certain life style. Then in the same sentence I was told many times that their children come absolutely first in every way. So can you please explain to me why so many of those Parents have no scruples to drop of their kids at school when they are sick? Yes, I get the point of not wanting to miss work or a pay check because your child has a cold but how does this translate in your child coming first? Wouldn't be the first choice be staying home and taking care of your child? and how about being considerate to the next child who might be sitting next to yours that is sneezing and coughing? and we all know how great kids are with hygiene to begin with.

Two weeks ago I was waiting for the boys to finish their reading class which went from 8 am to 8:30 am. Now school starts at 7:45 am and while I sat by the front Office at 8:15 am reading a book, a man came out of a class room carrying his sick looking daughter and said to her that he is sorry she just threw up and that they will go home now so she can rest! You tell me that he or his wife did not see how sick she looked at 7:45 am? 30 minutes earlier?

JDM might be a rare Autoimmune Disease BUT there are many other Autoimmune Diseases out there and when you combine all the numbers you will face a few thousand kids in the USA that have compromised immune systems. So there most likely is a good chance that there is one of those kids in the same school your child goes to. Do you have any consideration what a simple cold can mean to one of those children? If your immune system is compromised a cold could mean a death sentence. Yes that sounds so dramatic but say that to the parent who had a child with JDM and who's diagnosis for dying reads Pneumonia. You think it is dramatic enough for them?

I guess the argument comes down to numbers. There are more 'healthy' kids then kids with an Autoimmune Disease, so I guess it comes back to what I said in the beginning, it is us parents who need to choose what exposure out children should get and school seems not a good choice for me ... now how sad is that? Now for Ron and I it is not a huge hiccup since we have the choice to home school 100% but what about those that don't want to home school or can't.

I have been thinking of another numbers game. You know how you go and buy medicine and you should read all the possible side effects? Or when you go into surgery you have to sign papers that you were informed of the possible risks related to that surgery? Or when you vaccinate you are also informed of the possible side effects they might have?

Well, here is my thought :) If it is printed and you are told to read through it and even sign a paper then that means that someone (and most likely more then one ;) came down with this or even died from it. Now once again the numbers are always in favor to the masses obviously or it wouldn't be approved BUT how much do those numbers mean to you if you get it, or a loved one gets sick from it or even dies from it? I tell you ... for you the target hit 100%!!! because quiet frankly you don't care to hear that this just hardly ever happens, all you care about is your heart breaking because you feel you lost control about your life.

Yes, you can not live in fear about what could happen but please do not ignore those that this happened to.... I am NOT saying you are, I just like you to think of those that made up these statistics....

Here is a little print out about how to recognize a cold from a flu and please notice the part about how long they are contagious. Would you be willing to stay home with your child for 10 days because he or she has a cold?

Your child is sent home sick from school with a runny nose and cough. Is it the cold or flu, and what should you do next?We asked Tina Q. Tan, M.D., Professor of Pediatrics at the Feinberg School of Medicine, Northwestern University and a Pediatric Infectious Diseases Attending at Children’s Memorial Hospital in Chicago. Here are her answers:

Suburban Woman: How do I know if my child has the cold or flu?
Dr. Tina Tan: Children with colds usually have a runny nose, low-grade fever, mild cough and nasal congestion. A child with flu-like illness can have the same type of symptoms except the fever tends to be much higher, and they usually have some nausea, vomiting and diarrhea. If they are older, they may complain of a headache, body aches, tiredness or lack of appetite.

SW: How long are colds and the flu contagious?
Dr. Tan: On average, a cold is contagious five to 10 days and the flu seven days; both are most contagious during the first three days of illness.

Just a thought ....

Hugs,

R A C A

A bit Sad but Feeling better :)

I thought I should let you all know that Connor is doing very well and the day after our ER trip you would not have known why we even went through this whole ordeal. Granted, both Connor and Alexander are still carrying Kleenex boxes around and the stuffy noses and the coughing has not left the building yet. Overall, however, they are back to playing Peter Pan and the Lost Boys and are as a matter of fact outdoors right now looking for Neverland. Not sure if they will find it or if it is up to Apple and Tasha to figure out which way through the forest they should go....

The sad part is the fact we wish we were in Texas now celebrating Dylan and Ryan's Birthday today. If you know us well then you know how much my two Dumplings love them and what a close and wonderful friendship they share. I am sad because I was looking forward to seeing two of my best friends and having some Girl time with a Bottle of Wine close by ... oh, well ... we just have to plan another outing. Plus I am excited to know that my boys favorite Girl Friends will be with us in March for Spring Break ... should I make a note here for the Tossell Family that they should head this way as well come March?

So and knowing me we are always going from one thing to another and the next highlight will be tonight when Ron gets home from his trip and will be off for a shocking 5 DAYS!!! One of those days will cover a trip to the Orthopedic Surgeon for Ron to see what we will face about his shoulder and it will include a fun day for the boys with their Papa going to see Yogi Bear.

I also stopped procrastinating in one area and Thanks to the great recommendation of three of my wonderful Mommy Friends here in CO we now have an Appointment for a Pediatrician for both boys on February 3.....

Wishing all of you a fun weekend and hope you can stay away from any cold or flu bugs ...

P.S. the pictures are Peter Pan and one of the Lost Boys, Mega Mind, and at the ER.

Hugs,

R A C A

A week of JDM ... Oh the highs and lows ... That's Life :)

One week with us and you truly will be up for some free entertainment! This blog truly goes back to the roots of why we started it ... Our Journey thru JDM...

I am going to start about telling you some wonderful news on Connor's battle against JDM. Remember how on December 21, 2010 he had casts put on his feet to help stretch his muscles? We were then told that they will be on his legs for 8 to 10 weeks, with a change in casts and stretch every two weeks. He had his first change of casts done on January 3, 2011 and was told then that he was doing very well and with any luck he might only need the casts for 6 to 8 weeks :) Well, we went in on 18th of January for the next change and were completely blown away by the news that Connor had improved so much that the casts were coming off after just 4 weeks!!!! Talk about once again Connor being amazing in his fight against JDM! In every step of our journey we were faced with sad and sometimes devastating news but almost in every case Connor showed us that he and his body were ready to fight and he recovered on each level faster then the Doctor's predicted. We have been told in Chicago, Washington D.C. and Denver that he is truly amazing in his push for remission. Yes, we are still far away from even talking Remission but we are aiming for it and we are very hopeful that this word will enter our daily vocabulary at one point :)

We also had some good news in the way that our Excursion was repaired on Tuesday as well and is running beautiful once again. The final cost was $1027.48! so much better then $3950.00 if I might point this out once again! :):):) So you see Tuesday the 18th was a really great day for us.

Now yesterday, Wednesday the 19th, started out a little cautious. Both our dumplings showed the signs of head colds and you know how even colds are not a pleasant sight in a home that deals with JDM, plus we were truly getting excited about our trip to TX for the weekend so I did not want to see runny noses and coughing. I am of course also nervous about the Reading Group the boys started attending last week. The boys keep telling me that there is always one kid or another in their class that is sneezing or coughing. You know if you live a 'normal' life then a cold is not that big a deal but for us it is so we walk on eggshells around them.

So lets jump forward to 6 PM last night when Connor told us he was feeling very sick and did not want to eat anything. He went and sat on the floor in front of the toilet until Ron got him a bucket so he could sit on the sofa instead. He started throwing up shortly after that and did truly not stop until about 10:30 PM. This also included diarrhea and headaches. I went and took his temperature and it read 100.3'F. Not to bad, so we figured if he could just go to sleep he would be fine. Ron gave him a big bottle of water by the bed and when I woke him up at 6 am so we could drive Ron to the Airport we found all the water gone and Connor laying in his bed crying so hard because he said his head felt like cracking open. I took his temperature again and he was at 102.2'F. Ron went and took himself to the Airport and I gave Connor some Tylenol and he went back to sleep. He woke up at 8:45 am and said he was feeling better and that's when I saw his lips. They were swollen and had liquid filled blisters all over them. I posted the picture above so you know what it looked like. Luckily Connor has a great Rheumatologist here in Colorado who was in constant e-mail contact with me since 6 am this morning, and I am also so so so grateful to the JM Mom's group on Facebook. They were a rock today with all the feedback, support and even laughs I got from my postings there.

So after talking with Ron, who was on his way to DFW we decided it was safer to take him to the Memorial Hospital ER. Once again the ER staff was exceptional and we arrived at 11:30 am and did not spend one minute in the waiting room. After they got Connor's name and saw in the computer about his compromised immune system we were moved right away to a room. Now I admit I wish we had a Pediatrician we trusted and I would have rather gone there but as it stands we are still without one and after our disappointment last year we never got up the energy to find one that understands the complexity that comes with dealing with a child who has JDM.

Now, I also want to point out that to most parents it would seem extreme to be so on edge just because your child has a fever, throws-up, diarrhea, headache and blisters on his lips but there is one symptom no Mom or Dad of a child with JDM will take lightly and that is seeing a fever over 101'F, especially when your child's immune system is compromised and the medication he is one could mask any infection that might be running through his body. We were told when Connor first got sick that a fever of 101'F could really translate to 104'F or higher.

To make a long story short, before we left the house for the Hospital I gave Connor his am medications because he said his tummy was feeling better. One of them was the Naproxen who would also help against the fever and headache. Well, we had a 1 hour and 15 minute drive and when we arrived Connor said his headache was gone and he had also pulled off all the blisters on his lips. So what I had was a description of symptoms and a picture of what he looked like about 2 hours earlier. His fever also was down a bit thanks to the Naproxen and Tylenol in his system, so we got a room and Connor got some Zofran for the nausea and the waiting started. The boys got each Popsicles to eat and after about one hour the port was accessed to draw blood. Interestingly the blood draw went very well compared to Tuesdays at TCH when we had to stop drawing blood due to the poor flow. Here was my son who we were told today had blisters on his lips due to severe dehydration but who's blood was flowing nicely, not something that usually happens when you are dehydrated ... oh, well.

So then we waited and waited and when the Doctor checked in again Connor told him he wanted to go home now. We were told that the blood work was not back yet and that the Blood Culture would take 48 hours, but since he was now looking good and drinking we could get released. So we packed back up with a prescription of Zofran and headed for home 5 hours after checking into the ER. Now Connor had not eaten for almost 24 hours other then a 1/3 of the Popsicle so I asked him what he wanted ... his wish was fried chicken! Figures, right?

We went to Popeye's and when he saw they also had fried popcorn shrimp he went and inhaled a basket of those.

Now the sad news is that this all put our trip to Texas on hold. For one I do not want to travel when my boys are not 100% and also I do not like to travel when I don't know what exactly is wrong with Connor. Now when we discussed this Connor cried at first but I told him that this was not his fault and things happen that we have no control over. He then looked at me and said "Mom, it really is not our fault at all and I guess that's just life" ... yes, it's life! and we just have to roll with it.

Of course my husband called us from San Juan on our drive home and said what time we were leaving for Texas tomorrow ... pretty funny :)

and another bright spot today was the fact that the Excursion drove like a charm.

So all this in a three day span so I guess I should hold my breath and see what else might happen ... we still have three full days left to end the week ....

I need to point out again how wonderful Alexander was through all of this. It is truly no fun sitting for 5 hours in a Hospital room, no matter that there is TV. It is boring but once again he was a great brother being so supportive again of Connor. I just so love and admire my two babies!

Also, today was my Papa's Birthday and in a perfect world we could have been in Germany to celebrate with him and then end the day with a big Party for my Cousin's Andrea 50th Birthday Bash .... just to think I could have been partying and drinking to much wine and beer today plus eat myself crazy with Birthday Cakes? --- truly something is wrong here ;)

Hugs,

R A C A

Day by Day ... and never know what that means :)

Remember me, the one that said that I am more at peace now because I decided to go Day by Day instead of worrying ahead over something I can't control? That was the 'only' resolution I made for 2011 and so far it is kind of working. By being at peace to some degree does not mean I will not have days were I don't feel paralyzed by fear and the feel of suffocating by the pure pressure of everything around us.

Oh, how I wonder at times where my inner calm goes but I can tell you that in the last few days I so wanted to swear and yell at people, and that from someone who does NOT swear but does occasional yell, just ask my dumplings :), and as to swearing, well I do abbreviate as in 'Heck', 'Darn' and 'Shoot' - which I KNOW means just about the same - haha) No, I really wanted to say the real words .... so shocking to me but true!

If you are 'lucky' enough to be a friend of mine on FB then you know all about my rantings a couple of days ago. It really was the kind of day a four letter word starting with H would qualify for, and I was hoping that at anytime someone would knock on our door and offer a 'Witness Protection Program' for my whole intermediate Family in the name of being in danger of going insane .... ;)

You remember my last post about me complaining about the 60,000 mile check up on my Baby Car? Oh, how I should have bitten my tongue because right now I know that this is almost the cheapest worry of it all! Here I was being nervous about $800.00 when just a couple days later I would be faced by a phone call from Ford's Phil Long about a dooms day diagnosis for our Excursion. Not only did he say to get it driving or moving at all it would be $1700.00, no but to get it in "Tip, Top, Shape" it will be $3950.00!

So I went to bed that night not feeling all that well and then waking up at 3 AM to go to the bathroom to find myself wondering why the water was not running. Well, my brain took about 1 minute to figure out that we once again had a frozen pipe.

Then later that afternoon the worst news of all came in the form of a phone call. Our friend Monte Campbell lost his short battle with Melanoma Cancer. He was diagnosed the first week of December and never had a chance to fight it. The Doctors said that they had never seen a cancer spread this fast and at that rate. This was really heartbreaking news and our hearts go out to our friend and Monte's wife Galina!

To jump a few days ahead now, we now had the Ford towed back home and the Gentleman from Anger Management, Edward, will now work on it. I had a long talk with him and he looked at the estimate we got from Phil Long and he promised us that he will have it up and running and a much more reasonable price. We trust him tremendously because he used to work on a previous car we owned after having a run in with Phil Long, and once again their doom's day prognosis turned out to be false and we had a great running car until we traded it in. So, as a matter of fact we just got a call from Edward while I am typing here and his Estimate now is $900.00!!! PLEASE call me if you live close to us and ever need a Mechanic. I don't know why we even ended up with Phil Long this time other then the Tow Company towing the Excursion there from the Airport.

Our pipes are also thawed out again thanks to some degree of it warming up and the attention they got from Andy's Plumbing. This was the same Gentleman who worked on our bursted pipe on New Years Day. A very nice man who understand the pain of having so many issues with a new house because he is dealing with some of the same issues in his 3 year old house, thanks to it being build while he was still working in California. All the connections we make here with other Home Owners does not put a good light on Builders in our Region.

We brought in the LEXUS today for it's 60,000 mile check up and we had a new version of my car as a loaner within 3 minutes of our arrival. We just received a call from them as well letting us know that it is ready to go and that all checked out beautiful. No 'Doom's Day' prognosis from them.

I am very happy about this because we live 40 miles from C-Springs and last year we put 14,000 miles on our cars just for trips to and from The Denver Children's Hospital, the Therapy Center in C-Springs and the Hippo Therapy in Edwards, CO.

So, as you see I am going Day by day and the last two Day's have been much better. Of course a huge part of all this is having Ron home. I know he says he trusts me completely with making decisions and taking care of things at home when he is gone, but it feels so much safer when he is here and we can work as a team. Of course Ron itself is a concern right now as well as his right shoulder has been bothering him for a long time but is now so acutely hurting him that even moving his arm is painful. This is bad news as in him not being able to take sick leave because we can not loose his income and there is not enough sick leave left to cover another Rotator Cup Surgery.

I am still convinced that something triggered 12-31-10 in the way that chaos seems to follow me ... so be careful when you are around me, it might be contagious!!!

Oh, since this is a JDM Blog I guess I should tell you all that Connor's second Methrotrexate Shot in his bum went very well. He does complain about it hurting a bit but not as bad as the previous ones :) So I am hoping he can keep some cushion on his behind :)

There also are some sign's that my son has a positive outlook left in him because even thought the outings as in Skiing, Skating and Rollerblading are off the table for now, he did find a very bright spot to the fact he is wearing casts on his feet. He told me this morning that he is happy he does not need to put on shoes when we leave the house and vise versa take them off when we get home :)

We did add one more medication to his daily schedule and that is an Iron Supplement (Ferrous Sulfate 22MG/5ML Elixir). This is due to the fact that for some unknown reason Connor has been anemic ever since he became sick with JDM. None of his Doctors have a clue as to why, and he went through many testings during this last year to find a reason for this. For a while there was concern last March that he had internal bleeding's but nothing was ever found. The hope Dr. Soep has is that the Iron Supplement might help in some form. Nothing will be lost by trying this.

We also learned from Dr. Curran that there might be a problem in regards to his Baby Teeth falling out. Something about the Immune System and the medication he is taking hinders the part about his teeth loosening up so they could fall out. He already has almost full grown permanent teeth behind his bottom Baby Teeth and they are not even wiggling. So now I need to ask if this means we need to have them pulled out?

Never a dull moment in our live, but then it is ours and I would not want to trade it (Witness Protection Program or not - HaHa!).

Hugs,

R A C A

Aging, Cars and wishful thinking .... :)

So I know I might have aged quiet a bit this past year but I had no idea how bad it was until I got my mail and saw a $10 discount for the Senior Sunset Magazine in my name. Yes, I am turning 40 this year but I thought that leaves me some time to go before getting Senior Citizen Discounts - yeichsss ...

Next week my Baby (Car) has to go in for a 60,000.00 mile check-up. That by itself is shocking because it tells me that I added over 20,000.00 miles to my car this past year 'Thanks' to JDM and the traveling we are doing back and forth to TCH and Therapy Appointments. Now here is the interesting part. The check-up will cost $720.00 + Tax, and we were informed on the phone that this will include them changing 2 Air filters (I had no idea my car had 2!), rotate the tires and the best part they will even check the Fluid Levels ... wow ... on my calculations that means to pull out the dib (sp) stick and look at the level might run for $50.... oh can I please get a job at a good car dealership? I promise I will be very focused on looking and checking the levels :):):)

Now don't get me wrong. I have not had a complain about the Lexus Dealership so far and they have always been very courteous and friendly, plus they do a great job washing and cleaning it :). We do need to have the check-up done at the Dealership due to our extended warranty but of course I would prefer it to be a bit more reasonable price wise :-O

On another interesting note my boys were listening to the Satellite Radio yesterday and Ke$ha came on and they remembered that they saw her on New Years Eve perform right before the Ball dropped. Connor then told me that he thinks if I was to dress like her I would be truly beautiful ... okay, so NOT happening. I mean first I am labeled Senior Citizen and then my boys want to dress me like a 20 year old? Oh my world!

The saving point came when Rhianna came on and was singing 'Only Girl in the World' and Alexander yelled at me that I was the only girl in the whole wide world for them'.... Thank goodness for sweet and precious 6 year old's!

How can one ever explain the love you have for your kids. I know there are no words to it and no comparison.

Hugs,

R A C A

Chicago, CHM and Dr. Curran and some day to day events :)

So we are back from Chicago and I have to say it was a very good trip for the boys and I. All went extremly smooth on all the flights and once again I am going to brag about AA. On every flight we were allowed to pre-board, and on each flight we got my favorite row ... 8 D, E & F. I am not a fan of the bulkhead because I have no storage room during take-off and landing so I was grateful to get row 8 instead of row 7. We did get one flight in First Class and we shared it with about 10 Air Force Men and the boys LOVED it. They were all so nice and talked to Connor and Alexander for most of the flight.

Once we got to ORD we had an easy time to get our Car Rental and I had booked an SUV due to the Wheel Chair and the worry about possible snow but was told they upgraded us to a 'Mini Van'. Well, being an SUV Girl I was not so sure what they mend with upgrade but after seeing how much room it had and how easy it was to store the Wheel Chair and luggage I was more then impressed :) Don't get me wrong, I am not trading in my Baby but I can see now the benefits of those Mini Van's - haha

I also want to point out again that TSA did a wonderful job with Connor and asked me each time if I prefer a private room for his touch down and since I told them this was not necesarry they asked me to watch them closely so there were no concerns. Connor of course was a trouper and knew exactly what was expected and it became kind of a game where Alexander even asked to be patted down. I used to be very critical but have to say that thanks to some knowledge now about what is happening still on our fight against terorrism I am grateful to see Employees that do a great job and are friendly and courtious while doing it. So a shout out to COS and ORD TSA!!!

Chicago itself was marvelous. The boys asked to have a Chicago Hot Dog the first night there and we found this most fun local place called 'Flub A Dub Chubs Hot Dog' ... HEAVEN! If you know me well then you know that I believe Heaven is found in great company, great friends, an amazing family and FOOD. So I promise you heaven was right here on Earth with us on our Eating Experiences in Chicago. The next night we ate at Eduardo's and had Pizza who was scrumptious :)

CMH was also as remarkable as we remembered. The three of us had a really touching time traveling down memory lane while visiting the 9th floor, 4th floor and cafeteria. It is so hard to believe it has been almost one year since we spend three weeks there and how touching it was to hug and talk to the nurses we had back then and also one of the Janitors and one of my favorite Cafeteria Workers. We even were so lucky to see Erin and Pete who were our Angels while at CMH and who took care of Alexander and took him for outings several times last year. It was sad but heart warming remembering Hope and her precious family and what an impact they have made in our life this past year. We remembered the laughts we had with Henry, Connor's first Roommate and then of course Grant, and the most amazing friendship that came out of this for the boys with both Grant and Evan but also for me with Kim who is like a sister to me now.

As to the actual Check-Up with Dr. Curran we got good news. She is in agreement with Dr. Soep about Connor's improvemnst and we will continue to tapper off the Prednisone as we started and while we were unable to make a true assesment with Therapy about Connor's improvemnts in strength, due to him being in casts, the overall impression she got was that he looks like back to 'normal' (who in my family is that? - haha). This was all around great news. The interesting part about CMH is also the fact that we left with about 3 suitcases full of toys that were given to the boys during our three week stay last year and within 10 seconds of entering the building on Jan 6, 2011, the boys had toys in their hands 'Thanks' to the Three Kings Day. Trust me I had not planned on packing two remote controled cars in my rollerbag but I guess since one was a Ferrari we made an exception ;)

Well we are now home again and we will be returning to CMH on May 12th. This time I am hoping Ron can join us and we can add a day or two to it and visit with the Fuller Family as well.

Coming Home was so good and even thought our boys slept like Angels while in Chicago (the first night they slept for 12 hours! from 7:30 PM until 7:30 AM), it is still the best to be able to go to bed in your own home. Ron picked us up and unfortunetly we only had last night and this morning with Ron before he had to leave again for his next trip, but some time as a whole family spend together is better then none.

Tonight I like for you to remember a fellow JDM family who shockingly not only have a child that is dealing with JDM and the challenges that comes with that but also just lost a husband and father to cancer on January 3rd. I can not imagine the pain that comes from this .... I thought nothing would shock me anymore but then there is always something else that comes up that takes your breath away and makes you sit down and think.

Hugs,

R A C A

Ciao 2010 and Bonjour 2011

I am not sure how to read our ending of 2010 or the beginning of 2011. I did say that for 2011 I am going to take each day as it comes but for some wicked reason I am attracting chaos and destruction about everywhere I go almost each and every day.

So here is a little lineup to the last few days. On the 31st of December 2010 Ron found that our Ford Excursion Diesel did not want to start when he arrived at COS at 8 PM, thanks probably to the COLD weather and the Diesel fuel gelling. I on the other hand broke the Snow Plow on our 4 Wheeler earlier that morning (thankfully I was almost done with plowing the 5 inches of fresh snow we had). In my rush to load up the boys at 8 PM to pick up Ron I forgot to close the Garage Door. Now we had temperatures in the 10's and 20's (Fahrenheit) and on top of that our Water Lines and Water Heater are in the Garage.

So can you guess that when we came home 2 1/2 hours later we were out of Water because our Pipes were frozen. To make it all the more memorable, one Pipe then decided to burst at 11:30 PM. So we had a flooded Garage and still no Water in the house. To say that we all went to bed in not a good mood is the least. However on a bright side this was the first New Years Eve that the boys were able to last until Mid Night and watch the Ball drop, on the down side to this we found out that the boys are in a miserable mood when not getting enough sleep... we had some grouchy kids all day on the 1st!

So on New Years Day we found a Plumber who would come out and fix the problem and by 11 AM and almost $300.00 later we had Water again and a fairly clean Garage Floor thanks to the water leak ....

Let's jump to January 3, 2011. Connor's Casts were exchanged for new ones with more of an angle for his feet. He picked the colors of 'Glow in the Dark' and 'Yellow'. I should probably mention that I almost took the Garage Door with me when we left for the Hospital since I for some reason decided to back up, the one car we have left that is running, while the Garage Door was still closed. Thankfully my husband was watching and loudly yelled at me to stop before I hit it.

Last night was a nighmare again for Connor who was in excruciating pain. His left leg/foot is in a worse condition then the right so they made more of a correction in that one and as with the first casts we hope the pain will subside in a day or two.

So and today was injection day again for Connor's Methrotrexate and this time we went for his bum and we had not any more success as when we tried his leg last week. Can I possible miss him being heavy on Steroid Weight around his tummy? I do miss the excess weight about every week for 5 minutes while I have to inject him and he is unhappy with me because I cause him pain. Today he was actually dramatic enough to yell at me that I am hitting a bone. Well, I can tell you I was far away from a bone since he does have cushion back there but he sure makes it interesting for me when he makes statements like this :-o

Now, I just hope our travels to Chicago will go smooth tomorrow. We are due for another Check-Up with Dr. Curran/Dr. Pachman on the 6th of January and we will be spending 2 nights in beautiful Chicago with a Hotel Room and an SUV Rental, thanks to AA Frequent Flyer Miles. Gosh how adventures we could be if I did not have the handicap of Connor's feet. As it is the boys and I will be traveling with a Wheel Chair once again ...

Hope your New Years end and beginning was a bit more quiet!

Hugs,

R A C A