Thank You Amerita & Walgreen's :)

Tonight I want to say a big Thank You to Amerita and Walgreen's who have been just amazing and very supportive of me trying to get all our ducks in a row for Connor's medicine schedule and our trip to Germany.

It really shows how wonderful it is when you get to know people and work with the same ones for almost one year!

First I called Debbie earlier this week at Amerita to see how we could workout the Methrotrexate Injections since I always receive one pre-filled syringe for Connor the day before his injection. The version we get has no preservatives and usually only lasts for 3 to 4 days. The best part was Debbie telling me to not worry and that she will set it up for us to be traveling with two syringes that will fit our timeline.

Then I was so lucky to have my favorite pharmacist at Walgreen's who told me that they can do an Insurance override and refill me the ones that I would run out off while being gone. It helps of course that she is also the Grandma of one of the little boys that goes to Judo with Alexander. Gosh, how much at times it is really helpful to live in a smaller town :)

So, Thanks to those two precious women I am now set with plenty of Medications to carry Connor into the middle of December. THANK YOU!!!!

Also, I feel bad for not mentioning this sooner but on Tuesday for Connor's infusion we had Lauren as his Nurse, who is a friend of Amy, Connor's all time favorite Nurse on the 7th Floor. Well, I have to say that Lauren stole our heart as well and Connor was very happy to have yet another nurse who is kind, caring and funny.

So this is once again a week for the women in Connor's and our life's :)

Hugs,

R A C A

Thanksgiving.. our tradition in being untraditional :)

The boys and I arrived Home about 2 1/2 hours ago and our trip has been magical. I have to say that traveling on an actual holiday is truly a pleasure. No lines and everyone was in a good and pleasant mood. The boys and I received our Standby seats even before boarding began and we all sat together in row eight :) I am jumping ahead however because I want to say how much fun we had as a family in Texas yesterday.

I admit I was a bit nervous about heading to Texas for just one day right after an Infusion plus traveling so close to our trip to Germany had me worried about feeling to rushed. However it was such a fun day that I am really glad we went.

Ron has been flying a lot this year trying to keep our heads over water with all the additional expenses we are facing and so finding time to do something just as a family has been sparse. We were of coursed blessed to get the Make A Wish trip and now being so close to our annual and traditional vacation to Germany but never less to have no interruptions and just be the four of us is very precious for us. We ended up going to the Grapevine Mills Mall which is such a fun place considering it is a Mall. I have such great memories off spending time with the boys there when they were small and still in their twin stroller. Ron had not seen the movie Megamind yet and so the boys, who have seen it already, surprised Ron with tickets for the 3D version of it. I have to say I used to be sceptical about 3 D until I saw the same movie now in the regular version and the 3 D version. 3 D truly was the better experience :) We ate lunch and had Coffee and Cake at the Mall and then headed back for an early night since wake-up arrived at 5:30 am for all of us. We all headed to the airport with the boys and I heading home and Ron heading on his next 3 day trip.

I am so looking forward to Tuesday now when we are heading to Germany but I am not to excited about the next four days because I feel so far behind. I want to mail some Christmas Boxes and our Christmas Cards, I need to pay bills :(, pick up and sort all of Connor's Medication so we will be covered for the next two weeks and then clean the house so we won't have to come home to a mess - haha. Plus of course I need to pack ... I am really good at packing for three day trips but the one to two week trips keep me on my toes :)

So, we might have skipped a Traditional Thanksgiving but I am thankful never less! I am always so grateful for the amazing family I have, starting with a husband who is and always has been my Rock. I am so Thankful for all the amazing and supportive friends I have and this year I am especially thankful to Connor's amazing Doctor's, Nurses and Therapists!

So and last but not least I am thankful each and every day to have the honor of being in the presence of our boys. Never will I be able to put into words how much I love them and how much the have changed who I am....

So Happy Thanksgiving to all of you!

Hugs,

R A C A

Part 2 of our Day ... Nov 23, 2010

Here I am sitting in our Hotel in TX after a busy day but one that was just amazing. I can not believe that the boys and I left the Hospital at 1:50 PM and arrived at DIA, parked the car, went on the Shuttle to the Terminal, checked in, went through Security and sat on the Airplane (who was suppose to be oversold) by 3:20 PM. I am always an optimist but this even surprised me! Denver International Airport even said on their website that they expect record numbers in travelers today and tomorrow. The funny part was that I was checked as usual from TSA due to Connor's amount of Medication but that they were the nicest they have ever been. The boys were offered 4 stickers from four different TSA Employees. I actually felt bad for them in some strange way because I know how much they are dealing with from the recent news. Maybe I am having the Stockholm Syndrome?

What makes this all so interesting to me is that I have been complaining in the past about the missing common sense that is put in action and the power trips I observed in the past from some TSA employees. However, most of my issues of course came from the effects of traveling after 9/11 and on top of this making lots of trips with our boys from the time they were small. Trust me when I tell you it was no fun having to argue my case as to why I need so much baby food, formula and Baby Powder whenever we were heading for Germany. However, I found out that a lot of the TSA Employees we encountered since Connor got sick were actually very kind and considerate. Now here is the part I do not understand... How can procedures vary so much from Airport to Airport? I travel with the same luggage and Medications for Connor now for over 9 months and there are places where everything gets checked and then there are Airports where I walk right through with no questions asked at all. What I found scary is the part about the Airports that were the most relaxed ... one was Miami and the other Orlando. Now Miami is a port city so I would have expected them to be more stringent, instead Denver is the hardest of them all. Dallas, Chicago, D.C. where about medium.

Just a thought .... I wonder if there was a way I could earn money being an under cover Mom with twin boys testing out different Airports and the efficiency of TSA workers - haha

As to Connor and his JDM news there actually will be some changes in the near future regarding his medications. Dr. Soep and I talked about the fact that we will not change anything until after we get back from Germany but once we are home again we will start weaning Connor off the Cyclosporin and instead up the doses of Methrotrexate from 0.6 ml to 0.8 ml. We will stay on the once a month IVIG and Solumedrol Infusions but we will cut back on the Prednisone. Dr. Soep told me she had a long conversation with Dr. Pachman and Dr. Curran as well and they did agree that this should be a good approach. This is very exciting news even if we are just shifting medications in some regard, less of some, more of another. The truth is, Connor has not gotten worse but seems to be at a standstill.

Now here is one part of the news today that might not seem so big but was huge for me :) When Connor went on the scale this morning he weight in at 21.2 kg. I asked the Nurse if Alexander could stand on the scale as well and he weight in at 20.7 kg. This is 46.7 lb for Connor and 45.6 lb for Alexander. This is the closest they have been in weight again for 10 months!!!!!!!!!!! of course, Connor is still shorter then Alexander but still, I am so happy. Even Dr. Soep told me that the first thing she noticed when walking in the room was how narrow Connor's face was getting :) and when we left Judo last night and the boys both had their winter hats on and Winter Jacket the other kids said to me that I should not dress them alike because they don't know who is who :) they said the only difference were the hair and with the hats you could not see it. Gosh how I loved hearing this!

There also in another news factor I got from Dr. Soep and one I need to talk about with my husband. Dr. Soep had talked to one of the Surgeons who put in the Medi Port and she said that in her opinion he should be able to partake in Judo. She felt that the port was pretty set and unless the impact was very violent it should be okay. Now, luckily Dr. Soep did not tell me this in front of Connor so that it will be up to Ron and I and not have his hopes build up and then we decide against it.

So, once again I am wishing you a Happy Thanksgiving! I for one are going to enjoy the warm weather here in TX which is in the 60's and 70's right now. It sure beats the 9' F we had at home when the boys and I left the house at 5:45 AM :(

Hugs,

R A C A

IVIG # 11, Nov 23, 2010

Today the boys and I are being probably the most adventures we have been since JDM entered our life. The three of us think of it as adventures but truly it might be just crazy then anything else - haha

For one, today is Connor's Infusion Day and so far he had his Port accessed, his blood drawn and the Solumedrol Infusion behind him. We started on the IVIG about 30 minutes ago and with any luck we hope to be done in about 5 hours. This is when instead of me driving home two very tired boys we will be heading to the Airport to try and catch a flight to Dallas/Ft. Worth. This by itself will be interesting but to attempt this during one of the most busy travel season of the year will be the reason it might be an adventure :) So far all the flights are slowly turning red, which means oversold plus Standbys, but the boys and I are used to this so we will get to the Airport, sit back and watch what happens.

When I wrote the title for this blog entry today I thought how it sounds as if Connor just had 11 Infusions when in all honesty I never counted all the Solumedrol and Methrotrexate Infusions he has received. For almost 8 weeks he had them daily, then for a while three times a week, down to two, once a week, every two weeks, every three weeks and now every four weeks. Now this might change again but I will know more once I talk to Dr. Soep.

One of the many things we were told at NIH was the fact that Connor in the Research Teams eyes was a severe case initially but that he has made the most progress of any child they met that started out in the same spectrum as he did with JDM. This of course gave us huge hope that Connor will be the one sailing into remission but we were warned that we are entering the most critical time right now and this is to balance his treatments with slowly trying to reduce some medication. Dr. Rider told us that our focus as parents needs to be being very patient and to not rush it but to move cautiously and slow.

So wishing all of you a very Happy Thanksgiving week and Holiday and I will do my best to honor it as well and not call Thanksgiving a 'speed bump' on my way to Christmas anymore - haha.

Hugs,

R A C A

Connor and Alexander's Protest about a US Law ...

So I have always wondered what is genetic and what is environmental when you are raising your child and today I am once again not sure :)

We studied all week George Washington, Monuments and Buildings in Washington D.C. and learned about the President of the USA. Everything went really well and the boys fell in love with learning more and they have both agreed that some day they will be Presidents of the United States of America. There was a slight discussion about how each wanted it more then the other but they then settled and agreed that they will be Co-Presidents and lead the country together.

WELL ... this bubble took a hit when they watched the last School Video on this subject and were told that to be President you need to be born in the USA. Since our boys were born in beautiful Khabarovsk, Russia, those news did not go over well. They have been protesting all morning and asked me to record them so they could give their voice to this matter. Now I did not coach them at all and all I did is hold the camera :) However, inside I am so proud to see I have children who can get excited about something and are not to shy to speak out about it :)

Hugs,

R A C A

Staying Home .... :)

The boys and I dreamed about today, a day for us to stay at home and not even leaving the house to pick up the newspaper at the end of our driveway :)

Well, as dreams go you might get part of them right but not all ....

It started okay with Connor and I getting up around 8 AM and right away jumping into our school session for the day. Alexander on the other hand was deep asleep so we closed the door and let him rest.

Interestingly I found that if I go straight to the school room with Connor and Alexander we are making great progress. Once we finish about 1/2 of the work load we then take time off for breakfast and this way it might happen that by 11:30 AM we are done for the day and the boys get to go off and play.

Well, the first change in plan's came when Alexander woke up feeling all yucky and sick. He ran a low grade fever and complained about a sore throat. The only thing he wanted was some cold Sparkling Water and to lay back down. So Connor and I finished up school and then I actually moved on to finishing up our Christmas Cards. Since we will enter another super busy time starting on the 23rd I want to have some breather down the road and be ready to mail all our Cards and boxes out as soon as Thanksgiving is over :)

After finishing up the Cards I watched the boys looking through their LEGO's trying to find the right pieces when this really crazy thought struck me that we should go ahead and organize them again. I remember that I was saying the same thing last year and then promising myself that I should never attempt this again BUT of course the memory of it must have faded quiet a bit because I truly did not expect it to be this exhausting again ...

There was no turning back however after we dumped out all the LEGO's we own. My precious oldest son started organizing them by color and I wish I would have stuck by this as well but of course that would not work for me ... I like to separate them all by size and shapes. I am telling you the biggest problem about this is that 35 years ago when I started playing with LEGO's there were not that many different sizes ... It is now almost bedtime for the boys and that means about 9 hours later and we still have a small pile left to work through... So, should this thought occur to you please remember my posting and call me first before you dump out every box you own :)

To actually also post some JDM related news, we are faced with some problems in regards to Connor's Methrotrexate Shots. Today was our 'Shot Day' again and Connor was getting very anxious this morning. For the last three weeks he has been complaining that they hurt and the explanation we have is that the fat on his tummy has gone down due to us cutting back on some of the Steroids and he is actually thinning down. Now he is happy about this part but he is not happy to loose the cushion he had for his shots. So far the stomach is still the best option because his arms and legs are even skinnier. Who would have thought that loosing a side effect that he did not like would be a problem for administering a medication?

Wishing all of you a pleasant weekend. We are looking forward to tomorrow night when Ron will come home, even if it will be for just one day. His schedule is very busy until the end of the month due to him having to move his whole schedule to be off for our trip to D.C. Once again my husband made sure we were taken care off! Thank You!!!

Hugs,

R A C A

Memory ... where does it go?

So I actually forgot to mention that Dr. Rider also noticed something new on Connor. There has been a battle about a spot behind each ear on Connor that looked like dirt and crust. For about two months now I thought he was just very dirty and I kept trying to wash it off and rub it with a wash cloth with no success. Well, I was wondering to some degree about why Alexander does not have this problem since I bath them together and wash them the same way. Turns out that this is a common occurrence for people who have insulin issues.

Now Dr. Rider ran a blood test for this and the levels looked good so we are thinking that he had some issues but they are now resolved and that's the reason why the spots are actually getting smaller.

So, I was wrong about thinking I was not washing my child right ... no soap or water could have taken care of this. Remember these words if you should ever come across some spots behind your child's ear! He or She might be having some Blood Sugar issues!

Also, I might mention that we were offered four tickets to see a Professional Basketball Game while we were in D.C. and that we went ahead and turned down the offer because we were to tired to go :) Only to us can something like this happen - haha

Have a Good Night!

Hugs,

R A C A

NIH ... DR. Rider and the Twin Research + Myositis Study

I am excited to start talking about our trip to NIH and meeting Dr. Rider. We were looking forward to it on a few different levels. For one, the boys truly did look forward to making their mark on helping with Research and of course they kept talking about Washington D.C. nonstop. Alexander especially studied George Washington all of last week and even ended his week in painting three pictures of George Washington, one of him in the Army, one as the President and one with his so beloved dogs. When we stopped for the boys haircuts on our way out of town, Alexander actually requested to have a George Washington Haircut. We were lucky they were not carrying those wigs in the store - haha.

Our trip started on Saturday the 13th with us driving to Denver and spending the night at the Hyatt Place Airport Hotel again. This is really such a wonderful place that we are becoming great customers of them :)

On Sunday morning we left for our non-stop flight on Frontier from DEN to DCA. The problem we faced with Frontier was the fact that it was oversold and we did not get the reserved seats we were promised but instead were handed 4 seats spread throughout the airplane. In the end we worked it out having three seats in row 22 and one seat in row 5. I was going to get closer in detail about what my thoughts about Frontier and Southwest were but I think I put it in just a few sentences. They are both delivering a product from getting you from one point to the next and if you are lucky you can get straight from point A to B but sometimes they make you stop at X Y Z first. Yes, they are cheaper as some of the bigger Airline competitors but what I found out for myself was the fact that it feels exactly the same way as it does when you shop at a Walmart or when you eat Fast Food. You do get a product but it's the quality that is missing. Everything felt cheaper and was cheaper, but you might get it with a smile. After all, Walmart has it's Greeters, right? So, I am removing the remark I made about myself about being a possible snob ... I am NOT but I do appreciate a little bit of quality. So yes I prefer shopping at Target over Walmart and I rather eat at Chipotle then McDonald's. I am not talking or trying to compare First Class with Economy ... not at all!

NIH was great and we loved Dr. Rider. She was very personable just like all the Doctors we have met that work in this field. I am still so amazed that all the Doctors we have met and who are treating Connor are women! Dr. Lauren Pachman, Dr. Megan Curran, Dr. Jennifer Soep and now Dr. Lisa Rider. We love and admire each of them!

Dr. Rider's nurse, Tina, was also an absolute Angel! I did not count them but there could have been over 40 vials of blood that she took of the boys in the two days we were there and the boys never once shrugged. Connor was able to give his blood through his port and Alexander had a perfect vein on his right arm that Tina was able to access on both days. There was also a Physical Exam for both boys and lots of paperwork for me to fill out. On our last day there, Tuesday at eleven o'clock, we met the whole team during their rounds. This is where we got to ask question to everyone and also meet Dr. Miller.

The interesting part for us was to hear that there very well is some genetic link happening. I asked about the possibility of twins having the same disease and I was told that in the whole Myositis Study there are about 40 to 50 known siblings with both of them having Myositis.

They are studying several environmental views of what could be a trigger or cause for flareup but there was no answer .... yet.

Now one of my concerns was what should be our stand on the Flu Vaccine that is out right now and the likely hood of Connor having a Genetic Disposition that reacted to his H1N1 Vaccine last year. You all know he showed his first symptom just 4 days after the H1N1 Flu Shot and what a surprise to find out that one of the Doctors on the team was indeed doing a research on exactly that :) I so loved getting a precious responds from Dr. Rider that in our case we should skip the vaccine for our boys because it truly is not clear if that was a factor or not. She put it in the most beautiful way ... you are damned if you do, and damned if you don't. So we are happily following Dr. Riders suggestion on not having the boys vaccinated. Now remember this is only for our situation! Each child has a different genetic makeup and what can cause a flare or outbreak for one can very well not touch another.

Another gift we received was Dr. Riders thoughts and ideas about Connor's treatment plans and I have to say what she told us made so much sense and we are grateful that she was so open to us. Connor is doing amazing but of course we are now entering the critical point of how much and how soon to cut back on any of the medication he is on. Most of you know how damaging it can be if you cut back to fast and your child ends up with a flare that can set everything back even worse then it was initially.

Our flight home on the 16th was pretty uneventful and the boys were so tired that they could not recall anything of our trip home. We landed in Denver at 8 PM and after heading to the Hotel for our car we were on the road for home by about 9 PM. Our drive home takes about 2 1/2 hours and poor Ron had to do this drive after a long day and on icy roads. We were lucky, I guess, because we were told that the day prior I-25 was closed due to a 35 car pileup and I-70 was in fact still closed due to heavy snow fall.

We are so glad we went to NIH and we are so happy to be home again!

Thank You to all of you for the precious notes!

Hugs

R A C A

Christmas Time and this Mom's Mind ....

So here I am entering my favorite Season and Holiday of the Year and I am actually hit by some very conflicting feelings ....

I remember how scared and frightened I was last year during most of the month of December and actually brought to my knees paralyzed by the fear of loosing our oldest son.

We are getting close to the timeline when Connor got sick and I am already feeling this fear again even if it is just the memory of it .....

I had a very hard time this year thinking of God and feeling any comfort in my believe and at one point I had to stop going to Church because instead of feeling God's presents or assurance I was feeling anger. None of the sermons made sense to me and I did not feel them speaking to me in any way or form and actually kept sitting there wondering if anyone really knew what they were talking about.... . Harsh as this might sound but I was actually trying to be nice by staying away from any building that might invite the intention of talking about God.

Now here was the tight robe I walked all year. Initially when all this happened I felt close to God but his voice completely faded away by the end of March. While I was closing myself off and turning my back to God, or to those talking about him, our two precious boys did not get that same memo and therefor kept asking me about God and bringing him into our daily life. We have always prayed before we eat and before bedtime and so there was no logical explanation I could give to my two six year olds why Mommy did not want to pray anymore. So here I would sit and still do everyday, bow my head and pray with our boys. Talk about feeling like a hypocrite!

Now as I mentioned in the start, Christmas to me has always been the most magical time in my life and I always talk about wanting the feeling of Christmas to last all year. I am pulled into this same feeling right now by listening to all my favorite Christmas Songs, like 'Carols of the Bells', 'Do You Hear What I Hear', 'What Child is this', 'Away in a Manger, 'Oh Come All Ye Faithful', 'The Little Drummer Boy', 'O Holy Night' and 'Silent Night'. This is a real conflict for my mind and my heart.

I know so many of you that have been in our life's for many years, and also so many of our new friends we made in our journey have been the exact opposite to me ... you take more comfort in God the more adversity you face. This truly fascinates me!

So here I am not so sure how I will approach Christmas and the Church this year. I know already that I would like to go to Church while we are in Germany just because I always feel like going when I am there. It is after all the Church I grew up in, was baptized in, had my Confirmation and last but not least our precious babies were baptized there as well :)

I also know so many people in my family and many of our friends have prayed for Connor and us and never would I take this away from my boys. Of course after you read this blog you might want to pray even harder for my soul but please don't worry about it at all. It is still the same and I feel stronger in many ways :)

As to myself I am getting strength and comfort from the security of knowing that no matter what is thrown our way my family has faced it and grown stronger from it all. I get hope from the medical professionals around Connor who put their hearts into what they are doing. I believe a Cure for JDM will be found through the dedication of medical teams and the research they are doing.

So, please know that we are still on a journey :)

I care very much about the challenges others go through and I do think of them even if I do not reply on an FB thread that I will pray for you. I might not pray but I still care!

Have a wonderful Christmas Season!

Hugs,

R A C A

Requesting a new Law ....

So I thought I would like to propose a new law :)

Since it is customary to give tickets to drivers that are speeding I would like to see the same happen to those drivers that go over 5 mph UNDER the speed limit. This has been a cause of upset for me traveling back and forth on our beautiful mountain roads ...

Now I realize some might be sight seeing and some are elderly but if you are by any chance just afraid and scared to drive then maybe after three strikes out of driving too slow you should be asked to move into town and use public transportation.

Sorry if this is annoying anyone but to be fair I am annoyed at lots of different laws out there and this way there would be finally one after my taste.

So, PLEASE if the speed limits says 50 mph DO NOT DRIVE 40 mph!

Thank You!

R A C A

A near Medicine Disaster....

Goodness, where do I start today?

You do know that I have been on a crusade since Connor got sick and that I do not cut people any slack when it comes to Connor's medical care. Well, if I can criticize others then I better be prepared to call myself on the floor when I mess up and today I did!

One of Connor's drugs he takes is called Cyclosporin. We are not to sure what kind of role this drug is really making in Connor's care but since he started taking this the same week he started IVIG and he started getting better we all decided we won't mess with something if it is working. So, off all the drugs Connor takes this is the most horrid tasting one of all. He 'only' has to take 0.4 ml twice daily but that still causes for a lot of gagging reflexes to kick in. The interesting part of this drug as well is the fact that even thought he is taking it now for 9 months it does not truly show up much in his blood levels. Of course the side effect of intense hair growth is showing up but the other part about the impact this drug can have on the kidney function has not materialized! This is a really good thing because Connor after all only has one kidney.

Well, every few weeks I pick up a new bottle and it comes in this little round glass bottle with a special top and syringe to draw up the medication. This month for some reason I was given a bottle that resembles the same bottles Connor gets for some of his other drugs ...

This morning I got all his medications out and started pre-filling the syringes he has to take. 3.5 ml of Prednisone, 2.5 ml of Enalapril, one crushed pill of Folic Acid dissolved in OJ and 0.4 ml of Cyclosporin.

I went and put the plate of medications in front of Connor who always starts out with the Cyclosporin because it is the worst, and then works himself down to the Enapapril and TUMS because they 'taste' the best. I gave him the first syringe and it went as well as it can go, the Folic Acid .. no problem. Then came the Prednisone ... I thought Connor was going to get sick right then and there. Somehow he still finished with the Enalapril and TUMS but was going crazy about how horrible the taste in his mouth was. I was really surprised at his reaction but then kept wondering why he was acting so out of character. I went back in the kitchen and looked at the bottles and to my huge shock there was the Cyclosporin sitting on my counter instead of the Prednisone!!! Can you do the math how many times Connor was over his normal dose? Instead of taking 0.4 ml, my son had just taken 3.9 ml!!!

Within a minute of realizing what happened I had e-mailed Dr. Soep, left a phone message on Michelle's phone, Dr. Soeps Nurse, and also told Ron. Ron said to call the Pharmacy and see what the Pharmacist thought. So I was on the phone with Walgreen's about one minute later and had a very calming talk with the Pharmacist on duty. His opinion was that there should be no worry because Connor was used to having this drug in his body and that he thinks if we just skip a day or two we should be fine. About 10 minutes after this I got a call from Dr. Soep and who had a similar report for me ... the pharmacist at TCH had told her that this was not in any form an overdose but that we should now skip two days of taking this drug. The more Dr. Soep and I talked we decided to skip three days. I went and told Connor, and my son thought those were the best news ever! A break from the drugs he so despises! He then asked me if we could do this all the time ... take a lot of it just once a week!!! gosh how simple it all is to a child's mind!!! My heart beat calmed down by around noon!!!

So almost 12 months of giving my son drugs twice daily ... just one slip and the outcome could have been bad. I got lucky and as Dr. Soep said to me: 'The best part of this is that this will be the last time I make this mistake'. Yes, I am positive at this one!!!

Hugs,

A

Therapies again and again plus Show and Tell

Am I really impacted this badly by this getting up early in the morning for Therapy due to me getting older or just because we are getting so exhausted from the constant Therapy Sessions Connor has?

Now do not get me wrong that I am really grateful he gets all this attention to help him get better without any argument from our Insurance! but those three hours in a row and having to leave at 6:45 AM is really painful for the boys and I :) Alexander actually slept in until 10 AM a few days ago!!!

So far Connor is still doing really well in OT and Speech. In PT he is making small improvements and today he walked for 10 minutes on a Treadmill with his feet pointed straight, he also tried to talk Miss Janette into giving him a better number in regards to his feet but she can only push so much and there really was no change from last week even thought he wears his braces religiously now...

So if you are one of my rare friends who is superstitious here is a little curve ball for you. Last year in early November both our boys came down with a cold and a fever about four days apart. By mid November Connor pointed out a tiny little plantar ward on the ball of his foot. By the end of November he complained that his foot hurt to walk on, then his knees and legs and by the end of December he was not walking anymore.

Well, I am NOT superstitious per say but here is Alexander sick from some kind of bug for the last week, he just showed me a little plantar ward on the ball of one of his feet .............. I better do not hear him say that his foot hurts, his knees start hurting and his legs are giving out! I am actually really happy we are heading to D.C on Sunday!!!!!

After Therapy we made a very fast run to COSTCO to see Jennie and shop a little for our trip to Germany and when this was done we rushed up the hill for Connor and Alexanders Show and Tell at Mrs. Struble's Cottage School. The boys got to talk about our Make A Wish trip and I got to explain a little bit what JDM is and what it can do to a body. The kids were all wonderful and very attentive. It really was fun and I am still hoping that maybe next year the boys can be a part of it again for two days a week.

So and right now we are home resting a bit until we have to leave to pick up Ron and Colorado Weather is giving us quiet a show. We came home three hours ago and it was in the high 60's and now it is almost 30! Winter Snow Storm is predicted to hit today and I saw some news that Larkspur is getting snow already. So I am guessing I will be leaving the house in one hour for our drive while snow starts falling. Happy once again that I have a husband who always makes sure I have a great car to drive no matter what weather is thrown our way.....

Before I finish I am sending some thoughts of support to a friend of mine who is going through a very difficult time right now!!!

Hugs,

R A C A

Happy to be me!

So I am sometimes feeling stressed about how busy our schedule is but not telling you all what the best part of my daily life is:

I get to spend every minute with my boys!!!!

Teach them, play with them, read to them and have them all to myself here at home is HEAVEN to me!!!!

I look at them and think the one part I will never regret is not spending enough time with them when they were growing up - haha. This is my dream and I am living it. THANKS to my wonderful husband who makes this all possible!!!

Hugs,

R A C A

So much happening so little time to write....

This week has been a whirlwind for us and there is so much on my mind and heart I want to write down and I am hoping I will get to it this tomorrow or someday soon.

Tonight, however will be a short entry but an important one for me! I want to Thank my husband for being such a tremendous support this week and helping in every way possible to make this back breaking week bearable and I also want to thank my beautiful friend Jennie for knowing exactly what the boys and I needed today. You gave us a fun day today I am so happy and proud to call you my friend.

HUGS,

R A C A

Halloween, Friends, Judo, Doctors and Therapies ...

I have skipped over so much those last two weeks and what stands out the most is how much we as a family love Halloween and how much fun we had celebrating it :)

This year I got treated to my first all grown up Haunted House, the 13th Floor in Denver, and it was such a high. The actors were amazing and scary and I know there were times I was laughing so hard I had tears in my eyes. Now they tell you when you enter that the actors will be very pushy, in your face, possibly rude and are allowed to touch but you can NOT touch them. So all was well until I was staring at a huge spider and when I turned I had some kind of zombie looking right in my face ... I tell you I jumped and pushed him by reflex about 4 feet back. The good news is that he was laughing about my reaction as much as I was :)

We spend the whole weekend with part of the Olson Family, Jennie, David and Zachy and it was fascinating to see Jennie Skype with Matt in Iraq and how great the connection was while I had a hard time getting a good connection with Ron in Lima, Peru. Figures that we are better connected to the Middle East then to South America - haha

We also got to see parts of the Emma Crawford Coffin Race which was more busy then I thought. They estimated about 7000 spectators down Main Street Manitou Springs. Google 'Emma Crawford' if you like to get the history on this race and you will see why this is such an interesting story :)

So and Saturday evening we also went Trick or Treating at Gold Hill in Woodland Park which was as always a great setup.

The boys collected of course a lot of Candy and I can tell you the Halloween Witch was happy to get enough to trade it all in for a Buzz Light Year and Woody from Toy Story.

Now this last week was pure backbreaking when it came to our schedule and it would have been hard if we all felt well but we were all dragging and the pain in my back was not really helping me keep a good composure or show the patients I needed so badly at times.

There were three happy events this week but they never less had us on the move. Alexander just loves Judo with all his heart and finally I am so happy to see him be joyful about something and super excited as well. The lesson takes 2 hours twice a week and he stays fairly focused through most of it. Everyone in this Dojo (sp) has a heart of gold and treats him so well. Of course Connor is not happy about the fact that he can not go but Ron and I are both in agreement that this is a great lesson for him to learn. For one so much time has been focused on Connor this past year and how many weeks did Alexander sit on the sideline watching Connor ride Horses during his Hippo Therapy?

This was then of course the other pleasant event this past week the hour spend watching Connor smile riding Alli. There truly must be magic with those therapy horses because every child I watch on them have smiles as big as it can get no matter how disabled or sick the child is. What a gift!

The unpleasant events were my three visits back to the Chiropractor due to my back, Connor and Alexanders Eye Doctor Appointments and the Dentist. We also had Connor's three Therapies as well again PT, OT and Speech. All of this kept us more in the car traveling and waiting in waiting rooms then at home. This of course set us back in school again so we had to work all through the weekend. I am lucky to no end to have boys that do NOT complain but always go with the flow. They have no concept how different their life's are right now compared to other 'healthy' six year olds but then what is normal? Alexander now probably things it is normal to have school time in a crowded waiting room ..

Now I have to say I admitted earlier that patience was not my strong suit this week and here is one thing that bugged me to no end ... something so small that it would usually just cause a shrug...

For the last two years the boys got a health screening at school. Last year they supposedly failed both the hearing test so we scheduled an appointment with a highly regarded Doctor in the Springs to have them thoroughly tested. Well, happy for us they both passed with flying colors, so no concerns. This year Alexander failed the depth perception test so we made an appointment with an Eye Doctor which turned into a complete disaster. I figured I schedule them both for a complete check-up just to be sure and as with the ears last year they both passed all the tests but not until after a huge meltdown from Connor due to the Dilating Drops. He does not mind being injected every week in his tummy by his Chemo Drug but the Eye Drops were his complete undoing.

Now, Yes, I am glad they had the complete check ups and they are fine but how can it be that they fail something each year during the health screening? and I admit it is painful for me to have to pay $200 each time for a visit when it is just a checkup ... It is not like I do not have enough worry about Medical Bills.....

All I hope for us is that this next week will be calmer. I could do with being snowed in for a few days - haha

So Thank You to all my friends who understand my moods so well and know when all I need is an ear and some laughter in my life... and sorry to all the strangers who throw their opinions my way because when I am in the kind of mood I was in last week I do not take prisoners especially when I am craving a good argument :)

Hugs,

R A C A

P.S. I posted a Video about Connor's Hippo Therapy on Facebook. I am not sure how to attach it here yet but will when I figure it out :)