Family Time...

It is a good day here for all of us since both my Brother In-Law and my Sister each made their flights today.

I picked up Rainer at 10 AM and will leave in a bit to pick up Beate who will land in C-Springs at 7 PM.

Connor had his Methrotrexate Injection again today and it went really well. I know it makes a huge difference for him to have the Lidocaine Cream on. The little Tube cost us $50 but it is worth it if I thought of the alternative of not having anything to numb his skin.

Connor was laying on the sofa and after I was done he smiled at me and then gave a scream in order to shock Ron and Rainer who were in the Dinning Room. They of course jumped and thought it was the injection hurting him until they heard Connor laugh out loud. What a wicked sense of humor my boys have :)

I also have to say I am slowly growing fond of our Loaner Car which we still have since it now looks like my car won't be ready until Tuesday. The Dealership was send the wrong compressor so when I called today to trade out the cars I was told about the delay. I was rather sad because I do miss my car but then Rainer pointed out that for a few days my car gets a break from me adding any mileage to it :)

As to the Pepsi Refresh, we are holding strong at #2 but need to make sure it stays this way so please do not slow down on your voting! Thank You :)

Wishing all of you a great weekend. We are starting ours with School tomorrow and then Connor and Alexander are excited about going to one of their twin friends Birthday Party. Ron in the meantime is leaving for work again in the early AM and will see Niki and Harlow in Anchorage, AK.

Hugs,

R A C A

Progress for Connor, Delay for Beate and a sad day for a JDM Family

Do you remember me talking about the braces Connor received at The Children's Hospital in March?

He was fitted with braces to have his feet straightened. To make them more attractive he got to pick a style for them and he choose a Spiderman design. Well, they might be as attractive as braces can possibly be but Connor never took to them. He was suppose to wear them each night but we were lucky to have him put them on for some minutes throughout the day.

I am happy to report that Connor has been wearing both or one of them for the last three nights! His new Physical Therapist, Lynette, told him how important they were and after being told this same thing by about five different people it finally clicked. Three nights ago he wore the right one, yesterday he wore both and today he went to bed with the left one on! We are so happy about this and I will gladly take it one foot at a time! :)

It is 9:11 PM right now and we should be home with my sister but unfortunately she did not make it out of Frankfurt last night. She missed out on the Dallas and Chicago flights by just two seats. Oh, the fun Non-Rev travel can be and on top of it it is not free of charge as so many believe. We still have to pay for our tickets but of course at a cheaper rate :) Now since we are from the same gene pool my sister does not give up easily and will give it all another attempt again tonight. First it will be Dallas again and 3 1/2 hours later Chicago.

My brother In-Law in the meantime will leave Atlanta at 7:10 AM tomorrow morning flying Stand-by to Dallas and then arriving in C-Springs at 9:10 AM and if everything goes the way I want it then we should have them both with us tomorrow night.

Our Family of four was busy today applying for new passports for Connor and Alexander and when we came home we found a letter from the 'Make A Wish Foundation' that Connor is granted his wish for a Disney Cruise :):):) All we need to do is send in copies of our 'passports', Drivers Licenses and proof of Insurance. This will be such a Dream come true for both Connor and Alexander and I love the fact that Alexander will get the same joy out of Connor's wish then Connor does.

THANK YOU so very much 'Make A Wish Foundation' for bringing happiness to our children in a way that we would not have been able to!

Today I will end my blog on a very sad note however. Through our JDM Facebook Friends we found out that a boy named Cole lost his battle with JDM last night. He was diagnosed 'just' three years ago.... Any news like this take our breaths away and make us pause because as much as it hurts to think of Cole and his family at the moment of the news you automatically turn and look at your child and wonder if this could be our future?

PLEASE once again I am asking you to reach out with your prayers and thoughts to this family. I can not and never will be able to imagine the pain they must go through right now. I only know of the fear of loosing a son and I know in does not compare.

Please, Please, Please Vote and Share again tonight. If a Cure is found it will be to late for Cole and his Family but it will save others. Thank You!

Hugs,

R A C A

Catching Up and School Time....

I was thinking today would be a calm day at home but it has been very busy so far. For one we are trying to catch up on School which is easy with Connor since he loves everything about school but is a bit more challenging with Alexander who rather plays outside with Apple and Tasha or build Lego's inside.

I was able to hold his attention very well for our Art Project this morning which included making a Sculpture. I am not exaggerating when I tell you that I have a strong feeling that my boys calling is in arts. They love painting, singing, dancing, acting and now they have been sculpting all morning.

We watched some Sculptures from Michelangelo, Claes Oldenburg and Freeman Loughridge, Jr. and Connor was mostly taken by Michelangelo and Alexander loved the fact that Freeman Loughridge, Jr. made all his Sculptures from Junk :)

Now even thought Alexander tries to get out of Math, Reading and Writing he does in fact do really well at math and loves to point out Sentences and Fragments when I read to him.

Then I am also trying to get everything in order so the boys can get new passports. I am still annoyed that I missed the fact that their passports expired in April! Our boys have been owning a passport since age one and we had all summer to get new ones and I just missed the boat completely on this one. I hope we can get them back and still be able to have a chance for a Disney Cruise. Connor has been talking about going to see a beach and Pirates for so long now ... of course knowing our boys they will be happy with any trip that comes their way :)

Tonight I am also going to battle against time and hope that my magic with beating the clock will work so I can get my sister on a plane to the USA in front of 5 other D3's. The flight is FULL and I so don't want to loose out on a good position for her.

On a really good note Ron is coming home tonight and we will have him home with us for two days before he heads out again for Anchorage, Alaska. His flight is delayed so the boys will be sad to find out they miss out on the traditional Taco Bell Dinner and I have to come up with something that resembles Mexican Fast Food :)

To end my Blog today I want as always 'Thank You' for Voting!

Hugs,

R A C A

Therapies! 3 Total and a save by an Extended Warranty...

Oh what a Day and were do I begin? I guess at the beginning where I always do :)

Today we started out leaving our Home at 6:45 AM for our first experiment with facing three Therapy sessions in a row.

Connor started out with Amanda and OT at 8:15 AM, followed by Speech Therapy with Kristen and ending with Lynnette and PT. Connor did really well at all three Therapies according to all three Therapists and we left today with Homework in Speech for the 'sh' and ch' sounds, and we also have stretching exercises to do at home for Connor's feet and legs plus he will start wearing his boots at night time starting 'tonight'...

Alexander in the meantime had 3 hours to spend working on school work in a small waiting room that was busy and of course noisy. It was not easy at all to try and keep my one son focused who already has a harder time concentrating. So when I felt that both my boys gave the best effort they could give I figured they earned a reward.

I asked them what would be a treat for them and I promise you that my heart dropped when I heard they wanted to go to Chuck E Cheese. They have been about four times in their life's and it is not a place I love to enter. I just see Germs everywhere and have a hard time relaxing, not to mention the food offered there is not my cup of tea at all. However, I figured if I can make them go through a morning like today then I can go through one hours of Chuck E Cheese. The boys of course had fun and I survived the experiment. I am however grateful in retrospect that the previous 3 times it was Ron who took them :)

We then stopped really quick at Target to get some Milk (and 'yes' there is a reason why I mention this :) and then went on our way home. The GPS was telling me that we should enter our Garage at 2 PM and of course why do I wonder it was 4 PM when we did enter our Garage with a Loaner Car.

To get to the Loaner Car we had to end up at a red traffic light with my oil and engine signs glowing bright red and my car going dead. I was able to restart and the lights went out but by the next intersection my A/C warning sign came on and we smelled a burning smell from the front of the car. I of course expected to see flames by then but all stayed calm and the best part was that our Lexus Dealership was only 2 miles away! I turned of the A/C and drove straight to the Maintenance Entrance.

Well, the good news was that nothing was wrong with the Engine or Oil (we just had a check-up a couple of months ago) but the burning smell we had came from the A/C Compressor quiting on us. The cost to have it repaired would have been $2000.00 if we had not 'THANKS' to my husband bought an Extended Warranty earlier. So now we don't have to pay for it 'Thank Goodness' and the boys and I got to enjoy the hospitality for 2 hours at the Lexus Waiting room which connected me with a couple again I had met at my last Check-Up Appointment. I also was handed three booklets from a Lady who was a Jehovah Witness after she overheard me talking to the other couple about Connor's JDM. I think I made her happy by listening to her and taking the booklets...

You remember how I always rated the Hospitals and ER's we got to visit in regards to how well they treated us? Well, I will do the same now to Car Dealerships because I am just in love with the Lexus Dealership here in C-Springs. When I pulled up today the girl that greeted us asked right away if I want to continue on with a loaner until they figure out what was wrong. I told her I rather wait since we live an hour away and if it is nothing then I don't want to be committed to coming down the Mountain again tomorrow. She then asked me if there was anything in the car I needed while waiting and I remembered the Milk I bought. She right away opened the trunk and carried both gallons inside and stored it in their refrigerator. When we were told we could leave with the loaner car and we walked out I watched two employees putting the booster seats and Milk in it.

Not to mention the waiting room is as pleasant as a waiting room can be. There is food everywhere from sweets to healthy, Sodas, Water, Coffee and Tea. Three Computers with Internet service, a playroom for the kids and a nice lounge to watch TV or visit with other customers. No one wants to sit and wait but if you have to then this is the place I choose :)

As you know now we did get home by 4 PM and we are beyond exhausted.....

At home greeted me an e-mail from 'Make a Wish' asking about the Boys Passports and I did not even think about the fact that they could have been expired since we travel all the time but of course it is one of those days and they did expire in APRIL. The boys got them at age 1 and since they only last for 5 years when you are a child they did reach their end in April. So now I have to see how fast I can get their passports redone.....

Do you remember how I used to always try and end with a good note on my blog when we were in the Hospital? Today I can end with the amazing and wonderful news that we are in 2nd Place for the Pepsi Refresh $250,000.00 Research Grant. This is amazing because we are an all Volunteer Group of Parents and Friends at CureJM competing against 400 other causes and it is due to all of You VOTING and SHARING.

Thank You so much and please keep it up so we can stay in second place or even move to the first place by the end of the month when the Voting stops.

Hugs,

R A C A

Catching Up ... Infusions and Exploring ...

Just because I am so far behind again in posting this blog entry might be shorter in an ironic way since you get 4 days of postings in one - haha

On Thursday Connor had his Solumedrol and Methrotrexate Infusion here at home and as could be expected there was a bit of a problem. Sharon and I were talking about how this might be our last In-Home Infusion if we are going to a once monthly cycle and of course there had to be something happening to it. Sharon set up to take a blood draw from the port when she realized that the kit that was send did not have the right needle to take the blood so she tried to use the ones we have to fill the Saline and Heparin flushes. Well, she was able to take about 3 or four vials and the line started to block up. She flushed it several times with Saline and Heparin and the strange part was the fact that at first the flushes went in really well but the blood did not come out well at all. She did hook up the Solumedrol and left with the vials of blood she was able to take and Sharon warned me that it might take longer for the Infusions to get in. I send an e-mail to Dr. Soep and left a message for her Nurse, Michelle, and within minutes I got a call from Dr. Soep who told me that the issue will be if I can not get the Saline flush in between the Solumedrol and the Methrotrexate, or if I can not flush the port after the Methrotrexate that we have to go to the ER again for a TPA flush.

Well, can you believe me that this was not something I was planning on doing that day? I am truly not a big fan of any ER even thought the one at Memorial Hospital has gotten my highest ratings so far :) Michelle also called back by then and gave me the same feedback so it was up to us to sit back and watch what happens.

I did get all the flushes in but with a challenge. It did not go in easy and took me about 1 minute to empty the syringe. The Solumedrol took 2 1/2 hours to go through Connor's Port instead of the usual 1 hour, and the Methrotrexate took about 2 hours instead of one.

Thursday also involved for us to completely remodel our Loft Office and School Room again. We put up bigger bookshelves and I had to reorganize the school room so I could set up all the new curriculum that came in the mail last week. I have to say I was in a bit of shock to realize how involved the curriculum was at first when it said to plan 5 hours of continuous work per day. Well, I am breathing easier when we had our first full day on Saturday and it took the boys and I 2 1/2 hours to do all the worksheets, watch the Videos and had our first reading assignment of making a sandwich... YES, you heard right! the boys had to make a sandwich on their own and then tell me what came in the beginning, middle and end. The end of our story was great depending from which view point you looked at it. It involved eating the sandwiches :) Connor and Alexander ate about half of there's and I ate none :) Remember we are talking about my boys who keep trying to talk me into baking a 'Pickle Cake' :)

Friday was a very precious day since all four of us went to the Farmers Market. How I love eating food that comes from farms located in our state. We had yummy peaches again, Corn and Tomatoes. Bred and Pastries from my favorite French Bakery and time with all three of the men in my life and I was one happy person.

As I mentioned earlier on Saturday we had our first 'full' day of school and it went wonderful. The boys were motivated and focused and I could not have been more pleased. So as a reward Ron and I took them for a drive to the Tarryall Reservoir for a picnic and some play time on the lake. It was all new for us and we were surprised to find a little beach and a great view of some people Diving from the Rock Formation into the lake. Connor of course was sprayed down very well with sunblock so we gave him some playtime in just the swim shorts. He handled it very well because we see no signs of him being affected by the sun at all.

Interestingly, Alexander has been battling a fever for the last three days and all Connor is having is a slight cold of runny nose and cough. Seems like Connor is skating by every little bug that comes his way and Alexander is the one that gets stuck with them all ....

Today, Sunday. we were very sad to see Ron leave again for another 4 day trip. So the boys and I are looking towards a very busy week of Therapy but which will have a happy ending by the arrivals of my Sister and her husband who will spend parts of their 3 week stay here in the US with us.

Please remember to Vote! I still have the link on my blog. Every Vote counts and we need to move from the 4th place to the 1st or second.

Thank you! and wishing you a relaxing Sunday afternoon.

Love,

R A C A

Family, Friends and Therapy

I truly wanted to post last night but I was so tired that just the thought to type on the computer seemed to much of a task :)

We had a pretty good day yesterday but also a very busy one. We started out leaving our home at 6:45 AM so the three of us, Connor, Alexander and I could arrive at the Therapy Center by 8:15 AM. Connor's first session was OT for 45 minutes with Miss Amanda followed at 9 AM by Speech with Miss Kristin. Amanda told me that Connor did very well and that his upper body strength was making great progress. He even climbed the rock wall they have set up and he took joy in falling off it into the foam bed beneath it. Speech went fairly good as well in regards to Connor making some progress in sounding out the 'sh' sound and then attempting the 'ch' sound, which is still a struggle. We are not ready for homework just yet according to Miss Kristin but we are getting closer :)

Alexander and I kept busy in the waiting room and I was able to talk to the scheduler and as off next week they will add PT to the lineup following right after Speech. So we are looking at 45 minutes each session which will add to 2 hours and 15 minutes continuous therapy each Tuesday. The waiting room is fairly small and can get noisy at times but I think I am still going to attempt to get some school time in for Alexander while we have to wait. The issue is not having continuous 2 hours and 15 minutes to work with. After each session you go and sit with the Therapist and talk to them for 5 minutes on how it all went and what progress was made or not. So we have to stay in the waiting room. I am confident we will make it work so it is not lost time for Alexander :)

We finished up at 9 AM and after talking to Heidi we all decided to meet at the Cheyenne Mountain Zoo for some downtime for our four dumplings. It was pretty hot and for a Tuesday very crowded. I did not realize that a lot of families might take advantage of the last few days of summer vacation. We still spend about 3 to 4 hours there before heading home.

By then our day showed how exhausted the three of us were. Connor and Alexander argued and fought about anything and everything non-stop. I was tired so not in a good position to work well with them and all three of us were very glad to fall into bed last night.

There was one more 'JDM' highlight (hear my sarcasm please) of having to stop by Walgreen's again and picking up refills, as we do just about every week, and once again having to pay over $200 for the medications. I might have stopped putting a price tag on this disease when it comes to posting on this blog but please trust me that the money we spend has not slowed down and doesn't seem to for who knows how long.

So while I am sad at times at how much Ron is gone now I am grateful that my husband has a job and is able to make the effort to keep us afloat.

Today is our last day with the Tossell Family who will be leaving bright and early tomorrow morning. It has been so wonderful and fun to have them here and I just don't understand why they don't see how great Colorado is and why they don't just move here???? :):):):) okay, I should not complain because as of now they are our most consistent visitors here. The beauty is that that they are friends but feel like family and of course we will miss them....

I am now off to bake some Cup Cakes from my new Baking Cook Book that Heidi brought me and then we get to sample them this afternoon for Coffee and Cake when Ron gets home!

Now it is time to THANK YOU once again for all your Votes for CureJM. We moved to the 4th place!!!! Just two more spots to go and we can be the winner for the $250,000.00 Grant that will go towards Research to find a Cure! So keep Voting and keep sharing the link to Vote on Facebook or your e-mail.

Wishing all of you a great Day.

Hugs,

R A C A

Vacation Time with Friends and Back to School Mode ...

I had to read up on my last post where I left off and I guess I skipped a couple of days again...

The Tossell Family arrived in record time and it is amazing how a family of four which includes six year old twin boys can make the drive from Keller, TX, to Lake George, CO, in 12 hours without any problems....:) but the most impressive part is that they do this with a most beautiful car, the Jetta Sportswagon TDI that has no DVD player in it. Now to all you parents out there I want to hear how many of you would brave a 12 to 14 hour drive with six year old twin boys and 'no' movies? Dylan and Ryan are just beyond amazing! :)

Ron had to leave on a trip the next morning which went form a three day trip to a four day trip by now. We just found out that he got reassigned to Aruba tonight for a 15 hour layover. He spend last night in St. Thomas and was suppose to end up in Miami tonight and come home tomorrow but now we will be lucky to have him home sometime Wednesday afternoon :( Airline life at it's best ... NOT....

Yesterday I had the pleasure to meet Davids Parents and Heidi's In-Laws, Gary and Sherrie, and we spend a nice relaxing afternoon here at Home together before heading out to a yummy Mexican Dinner in Woodland Park.

Connor and Alexander are both doing really well those last few days and of course they are very happy and over excited to have Dylan and Ryan here. How many times I have now heard that they are 'our bestes, bestes Friends forever' I can not tell you :) They are a match made in heaven and this is of course not to say that they don't have their issues with each other but they have the same energy which is something rare to find :)

Tomorrow we are gearing up for an early morning of OT and Speech Therapy and if the weather hold a trip to the Zoo afterwards.

Can you believe that we now had 18 days of afternoon Rain Storms in a row here in Lake George. Our Smokey Bear Sign in town has been on 'Low' for a few weeks running and I have never seen this during a summer in Colorado. Our Driveway is of course suffering from all this rain but on the bright side we are not worrying about any wild fires in our area anytime soon :) Wish we could send some of this rain to Russia since they could need a break!

I am going to end today with a note again to remind you to please Vote and Share the link through e-mail or Facebook. We are currently in the 6th position. The link to Vote is as always on the right hand side of this page.

Thank You! Danke!

Hugs,

R A C A

Good Day's at the Smith Family Home :)

Yes, it feels like a Roller Coaster at time here at our Home but I have to say that we had a really good day yesterday and today seems to be off to a great start. Both Connor and Alexander have been in great moods and it has been fun as always to have Ron home.

The big event today is the arrival of the Tossel Family who is driving to Colorado from Texas and should make an appearance late afternoon.They will stay with us until August 12th and the boys are so excited for Dylan and Ryan to arrive :) My big goal will be to talk Heidi into doing the Incline with me this time she is here. We usually go and hike the Seven Falls area but I want to shake it up a bit :).

The sad news is that Ron has to get up at 4 AM tomorrow morning and leave for work again.....

Wishing You all a fun and peaceful weekend!

Hugs,

RACA

Alexander, Doctors and Hippo Therapy

I am not even sure why I am trying to attempt to write in the Blog today other then wanting to get it all down before I fall asleep and forget half of it.

As always most of you probably know about last night from Facebook. Alexander had gotten a prescription for Daytrana Patches to help with his ADD/ADHD Diagnosis. Ron was told at the Doctors appointment that the patch Alexander was getting was the lowest dosis and that it is used for children at this age since the majority of ADD/ADHD medications are in pill form with a time release and therefor used mostly for older children.

Now to clarify, Ron and I are NOT in favor to medicate Alexander but we also know that something beyond what we are doing needs to be done to bring calmness in his life and his brain activity. You know what I am talking about if you are around him for 24 hours because he truly can not slow down his brain at all. It's as his brain waves race and he will hold his head and cry that he can not stop it. He moves nonstop, he eats faster then anyone I can think of and even talks fast.

So to get to the story about last night, I went and put the patch on his hip around 6 PM. The boys went to sleep around 9 PM and came to my bed around 10:30 PM. Alexander was twitching and moving restlessly for about 2 hours and had his first signs of visions around 12:30 AM. He said there were bugs in the bed I asked him to show them to me. By 1:30 AM I took of the Patch and I gave up to try and settle him down, so we got up and went to the living room. By then he was running at high speeds up and down the hallway screaming there were Spiders, Bugs and Worms everywhere. He would try to jump in my arms and as soon as I held him he would scream again and say that now the bugs were all over my body. I asked him to show me the bugs and he would start crying and say that I was not capable to see them that only his brain could see them. Of course by then I was busy searching the world of google and found one Mom who had posted the same reaction her son had from this medication, the only difference was her son had been on it for six months already before it happened and it also was back in August 2007. By 3:30 AM I turned on Noggin for him to watch and he would settle down for about 10 minutes at a time and then jump off the sofa and scream about bugs again. Once he made almost a back flip over the back of the sofa. He would move so fast and violently it was just crazy. Connor by then woke up as well and ended up watching TV with his brother. I went and watched them while working on the little Video I posted on FB. In the end our bed was a no go because it was full of bugs, his bedroom was no better and the sofa was just as bad so he ended up sitting on this little wooden chair watching TV. We moved to the School Room at 6 AM after I was able to get Connor back to sleep and then Alexander and I did some coloring. I called the Doctors Office at 8 AM and left a message and also left a message for Mr. Bob, Alexanders Therapist. I got a call first from Mr. Bob and he confirmed that this all sounded like an allergic reaction to the patch and even thought Hallucinations are extremely rare they do happen. Well, after all we do have one son with a very rare disease so why not have another son who gets one of the most violent reaction to this drug?

I got a call from Dr. Young's Office as well and we were to see Dr. Young at 10:15 AM.

By this time Alexander was feeling much calmer and I promised him we would get something from the store to take care of the bugs and insects.

We went to see Dr. Young and discussed what other options there might be and he gave us a prescription for Focalin. Now here is what I am nervous about ... No one knows what he was allergic against. Was it the patch itself or was it the Stimulant in the Medication?

If it is the Stimulant then no matter what medication for ADD or ADHD he gets will work because they all function on this stimulant if I understand this correctly.

After seeing Dr. Young we went to see Mr. Bob and talk to him about what happened and he told me that he is not familiar with the patch because it is just very new. He did however know about the Hallucination I was talking about even thought he confirmed that those are extremely rare. He also said that the risk is indeed in not knowing what had caused this reaction but he also looked at the prescription for Focalin and he was familiar with it and told me he uses that in several patients.

I have to tell you that I did go and fill part of the prescription after talking to Ron but I will also tell you that we have no idea if we want to risk giving it to him at this time. Ron and I agree that if we give it a try we will do so in the morning and when he is home as well.

I then took the boys to one of my favorite Stores in Woodland Park the 'Whole in the Wall Herb Shoppe'. I fell in love with Homeopathic Therapies through my oldest Sister Carmen and have used it frequently on myself but never on the boys. So my luck came when I entered the store and the Lady working there has a son who is now in his 20's but who could have been a copy of Alexander at this age. She told me of almost the identical journey she had gone on when her son was first diagnosed and how she felt the regular medications given were not a good match for her son. She pointed me to a pill they sell at the store but unfortunately it is the kind you need to swallow and Alexander is unable to at this point but I did find some Boiron Tubes that gave me some hope. I got three for Alexander and I told him that those little pebbles will take care of the bugs. I am sure part of it is due to the medication working out of his system but to get to a close on this story he took the pebbles three times yesterday and since I am finishing this part of the story the day after I can tell you that he had a great night, and woke up in a sweet disposition today. I don't think the solution will be this easy but I am glad that I might find the answers I need through a natural approach ... :)

Hippo Therapy was also yesterday afternoon and once again it was a huge success. Connor got to go on a Trail Ride this time and I find so much joy in hearing from other parents who have come to this therapy and whose children had a complete turn around when it comes to movements and walking since they started Hippo Therapy as well.

The good news for Alexander is that I got a phone number for a Lady who has a Riding Stable by the Garden of the Gods and who takes on Students as young as 6 :) She will call me next week to see how she can work in Alexander and the bets part is that she does not just focus on the children's riding skills but also empathy for the horse and he will learn how to take care of a horse in regards to brushing it and feeding it as well. It all sounds so wonderful and I hope it will work out :)

We ended up our day with a shopping trip to COSTCO and when we arrived home at 6 PM all three of us were beat.

Ron came home for lunch time today and we look forward to some quiet time at home. Our friends from Texas will arrive tomorrow for a little vacation here and we are very much looking forward to spending time with them.

Hugs,

R A C A

P.S. when I was up that night of Alexanders Hallucinations I made a tiny 30 second Video and I will try and see if I can post it.

http://animoto.com/play/ywMzWcACCR79KaYouTztOw

IVIG # 7 at TCH August 3 2010

Today we are back at TCH for Connor's 7th IVIG Infusion and everything is going smoothly so far.

First of all I am so grateful to my wonderful husband for being able to move his trip so he could come home for just 'one' day to be home with Alexander. It makes it much easier on me to just have Connor on our trips to TCH since it is a bit of a challenge to keep Alexander occupied for 6 to 8 hours when the only place you can be is the Infusion Floor. I do have to say however that it is a wonderful setup here with Miss Pat being on hand all morning to supple the kids with Arts and Crafts and taking the time to sit with them and play. Today Connor had his Nurse and Miss Pat singing along to the song 'Fireflies' by Owl City while his Port was being accessed. Thank Goodness for Internet Access and UTube who let us play the song and Video over and over again until it was done :)

There also is a very nice playroom here that supplies Games and Toys for the kids who get the Infusions but also most importantly helps all the siblings that have to come along to be occupied for a bit. On top of this we have an elderly Gentleman who makes rounds with a book cart and hands out books plus of course each room has an X-Box for playing games or watch DVDs. So truly it is the best setup we could wish for you if you have to make a trip to the Hospital....

Connor already painted a wooden puppy, watched 1/3 of the movie 'A Knights Tale' and is now playing in the play room with the Potato Head Family while singing Fireflies. There also is a group of boys making a turn around the floor offering cookies, Ice Tea, Water or Coffee on a card to everyone.... The Spirit of all the kids here is and always will amaze me. I think every person should have the ability to Volunteer on the Oncology Ward or an Infusion Center in a Children's Hospital to really feel what it is like or I guess you can join us some day and Connor will give you a tour :)

Ron and Alexander will actually spend some time at the Doctor as well since Alexander will have a Check-Up with Dr. Young this afternoon. I am curious to hear how this goes... we are still trying to see what we can do to help Alexander to calm down and get his body and mind into focus. I said it so many times and I will keep voicing this until I get an answer to why he is moving so fast all the time. He talks fast, he moves constantly, he eats fast and he even fidgets and moves all night while sleeping. This brings me to the question as to how much real sleep does he get when he is in constant motion?

One of the pictures I posted shows the boys in their new Alaska Jackets and Hats they got from Ron. I tell you it is hard for Ron to go an trips anymore and not have the boys jump all over him wanting to have a surprise brought back each and every time. All those great intention of not falling into this trap are hard to follow. I got treated to Alaskan Chocolates and Hot Chocolate with Blue Berries :)

Wishing You a good Day!

Hugs,

R A C A