Chicago Trip and Checkup :)

Oh what a fun, busy and crazy week we had!

Connor was scheduled for his checkup at CMH for the 21st of March but this time around Alexander also was asked to come for his yearly checkup for the Twin Research Study.

The Appointment went very well and Alexander, my brave little soul, volunteered to go first for the blood draw. He was amazing and so composed. He kept saying through the whole experience how it did not hurt at all. He was of course doing this to calm down Connor who does not do well when it comes to blood draws from his arm. Connor went next and got upset right away when he saw how many tubes of blood he had to give. Thank goodness for the wonderful nurse who had the patience of an Angel :) It took some tears from Connor but never less he got it done and they were both thrilled to have the worst part behind them and of course be handed an envelope with $25 in it for each of them :)
Everything else went very well and Dr. Curran agreed that we can start talking about more tapering. Our hope is to get rid of the Steroids completely :) as I agree with my precious friend Kim that we believe Connor's sweet personality will make a complete appearance again once the horrid steroids are gone.
The only set back was the PT assessment and I admit we saw that one coming. Connors feet and leg muscles are getting to be tight again and we are now faced with him needing to wear his braces again at night. We will also get a new prescription to get new braces fitted.

Now on to the highlights of this trip :) I had a most wonderful phone conversation on my birthday with my cousin Birgit in Germany. She pointed out how she had lots of surgeries as a child but how her Mom always new how to make each trip to the City for another surgery fun in regards to outings and things they did to distract. Even today, many years later she told me she only remembers the fun she had with her Mom.
So true by this we had a blast during the time we were not in the Hospital or at Doctor Appointments. This of course was all Thanks to the Miller Family who spoiled us in taking us places we would not usually see on our trips to Chicago.

The first day we arrived Kim took the boys to a neighborhood park to run and play and burn of some energy after getting up at 2 am, sitting in a car for 2 1/2 hours and the another 2 1/2 hours sitting in an airplane. How I love spending time with friends that understand and get the need kids have!!!
After we got back home Monica and her son Connor arrived and this was one treat I was looking for the most. Monica has been a most wonderful friend on Facebook and her knowledge and wisdom has helped me numerous times. So meeting her in person was just amazing and so much fun. Once Evan and Grant got home from school we had 5 active boys playing together and the highlight for my two dumplings was the part of all of them playing Baseball outside. Have I mentioned yet that it was HOT while we were in Chicago? 80'F the first day and 86'F the second. Way to warm for this Colorado girl - haha
Us girls got spoiled on yummy cookies and cup cakes (I do thing Chicago has a hold on some of the best cup cake bakeries!!!). We ended the day with a trip to another playground where the kids got to play on Scooters and play Basketball and then us heading home and filling up on Tacos :)
The next day we went to tour the Jelly Belly Factory in Wisconsin before the Hospital Appointment and after we were finished at the Hospital we headed to Ed Debevics for an early Dinner. It was so much fun that even Connor was dancing with the waiters :) The ending of the day came with a tour of Millennium Park and a trip around Soldiers Field. Alexander was on cloud nine!!!
On our third and last day we started with a trip to the Hospital for Grant and Evan who each had appointments. After we were finished there we headed to the LEGO Discovery Zone for some more playtime before the Miller Family dropped us off at ORD for our flight home. The flight went well and we arrived home at 11 pm. Tired but happy.

Thank You so much to the whole Miller and Forss Families for this wonderful experience once again. Thank You to Kim's Mom, Ervil, who has a heart of gold and always makes me feel like family when we come to Chicago! It is do to all of you that my dumplings think all our trips to Chicago are a vacation and not the true reason why we travel there.

One little bittersweet moment was the fact that this was the last time we stepped foot into the old Children's Memorial Hospital. They are all moving to the new building downtown this summer and our Doctor Curran will also have Clinic at another building in Lincoln Park. It is sad for us as we loved this place for all it has done for Connor and us. Of course we know it is just a building and the hearts of the Employees of course will move to the new Hospital.

Now we are getting prepared for our next adventure to Texas. No rest for us as we love being gypsies and being on the go :)

Hugs,

R A C A

Thank You! Danke!

So I turned one year older this week and I truly had a most lovely week all around.
It seems the older I get (41) the more I have to celebrate and this year I was spoiled again with three days worth of celebrations.

First we had a most fun week with the Tossell Family that came from Texas to spend their Spring Break with us. Connor and Alexander adore their twin boys, Dylan and Ryan, and it is a match made in heaven when they play together. No fighting or arguing, just a house filled with a lot of laughter all day long.
The day before my Birthday my beautiful Sister In-Law Sam arrived and we all went to the local Irish Pub for an early Birthday Dinner and Drinks (may I mention a very delicious Peach Drink times two :).
The next day the Tossell Family headed home and the rest of us had a quiet and relaxing Birthday here at home and me getting more spoiled with Cards, Songs and another little Apple Symbol :)
Yesterday I was treated by my lovely friend Jennie to a four course Dinner and Wine Extravaganza at the Mona Lisa Fondue Restaurant. The food and wines were beyond yummy and the company and five hours of conversation was truly heavenly.
I also want to say a big Thank You to all the Birthday Wishes through FB, e-mail and phone calls. I am a lucky girl and as always I do know that I am blessed with a most amazing family and some of the best friends one could ask for.

Next week we will be traveling to Chicago for Connor's and Alexander's checkup and I am confident that the news will be great. Next month we have an appointment with Dr. Soep in Denver and after that we should be looking at more tapering and also the possibility of Connor's Port removal. Huge steps in the right direction. I am thinking 2012 might just be our year!

Hugs,

R A C A

JDM musings from Connor :)

Yesterday was Connor's weekly Methrotrxate Day and today we headed down to C-Springs to the Children's Infusion Center for Cancer and Blood Disorders for his monthly Port Flush and Blood work.

Connor did really well with all of the above but for some strange reason this morning when I was in the kitchen cleaning up and he was a few feet away taking his medications he stopped and looked at me. I asked him what was wrong and he said he so dislikes taking all those medications. I said I feel for him and it is no fun at all. Then he kind of shocked me by replying after a couple of minutes that he has a lot to be grateful for when it comes to having JDM. He said if it wasn't for him being so sick he would never have met Grant and Evan and how much he loves them. He said he would not know Dr. Curran and Stan the Man ;) or Dr. Soep. Of course he said he loved the Disney Cruise which would not have happened this way if it wasn't for JDM.

I for one LOVED to see his brain work this way as we always talk about looking for the bright side but to all he has been through it is not always a natural reaction to things. So for him to mention all of this was truly a gift and a great reminder for myself.

So this post if for my oldest son who has been so brave in the past and had to face so many challenges but who's mind is once again looking for the brighter side. He truly is an old soul in many ways and I love seeing some wisdom come through!

Hugs,

R A C A

School Reports and the Titanic

Two Blog entries in one day ... I am not sure if I have ever done this since our Hospital stays but here it is.

I am doing something today that at times annoys me and I think we as a society do to much off but I am going to brag about our Dumplings huge success when it comes to their hard work in trying to catch up on the year they lost in their education and schooling. Don't get me wrong when I say this, as I do believe they had a tremendous education in so many ways the year we were in battle mode against JDM but they did miss out on First Grade and there were so many holes that we all agreed they would be better of repeating First Grade.

One of my biggest concerns was their reading and writing skills. They did very well in Math and Science but not in the other. I got a lot of help from my wonderful friend Kim Miller who send me a box of B.o.B Books and Inbetween the Lions DVD's. I truly believe it was the part that got the boys motivated to read. We also dug into our home schooling and put in a lot of hours, 6 days a week. The boys were allowed to get one day a week off which usually was Sunday and spend in PJ's all day playing games and watching movies. I got very protective of our goal and cut back any outside distractions and activities other then the Snowboarding lessons and they kind of fell in the Park County Curriculum ;)

So to get to the end of this story, today I got 6 e-mails, three for Connor and three for Alexander. It was the notice that they Graduated from the Little Lincoln First Grade Curriculum and the Grades were as followed:
Reading - A
Writing -  A
Math -     A
for both each.
I really could have cried as I know how hard they worked for this. Yes it is just First Grade but to us it was this mountain looking ahead of us since we always felt as if we were behind.
So THANK YOU Little Lincoln and Ms Elizabeth Callen for all your help and constructive input.
THANK YOU to Mrs. Sandy Struble who truly is my Angel and has so much love for our boys. I never seen a teacher with more compassion and more wisdom then her. She gave ME hope when I doubted myself. She knows how to push the boys and ask the most of them.
So the boys got the Grades, but I think this was a huge Team effort and I am very happy and proud!

On another note, Connor and Alexander are in a huge fascination about the Titanic. We own about 4 books on this subject and they even checked out books from the school library about the Titanic. So I end up reading to them and remembering being enthralled by this historic event when I was a child and now my boys are as well. What a sad Tragedy it was!
Thank You to Kathleen Burkhardt for this amazing Book about the Titanic the boys got for Christmas!
How many of the 2,227 on the Titanic thought this Ship would sink? only 705 ended up surviving! Today we listened to a song on the way home from school about living life as if you were dying. Connor wanted to know what this means and I asked him if I told him he would die tomorrow what would he do today? and he said "Have lots of fun". Exactly! what I replied to him is that we should try and have fun each day. We still have to work but you can have fun while doing it.

Hugs,

R A C A

Grant & Max

There is a part that has changed over two years ago that is hard to explain but I will give it a try.

When I read a blog or get an e-mail about a child that is sick and battling a Disease or illness that has no Cure or no explanation, something happens inside of me that will impact my whole day, week or months to come.

This morning I read my dear friend Kim's Blog about the new battles her son is facing, the pain he is in and what her days look like due to this. When I read this I feel a sadness and a kind of exhaustion come over me and when I read about days that are very challenging then I get a clear picture again and again of days when we were faced with them. Those feelings become a part of your inner being and your DNA. You read the sentences but you feel the exhaustion, the fear, the lack of rest coming through with every word.

I also got an e-mail from some wonderful friends from our past lives in Texas. They also have Twins about the same age as Connor and Alexander and their little boy Max is having unexplained Seizures. He has undergone several testings and no answers yet. He had another Seizure last Saturday and are now scheduled to see a Neurologist. Once again the fear of the unknown is so clear and I am not sure if I would truly feel this if it hadn't been for Connor.

So I am asking you to please keep Max and Grant (including their Parents) in your thoughts and prayers! The sooner we find Cures, Answers and Treatments that work, the sooner little selfish me will not be bothering you with postings like these. BUT until we do I will post and remind you all about the worries that are out there and the pain families go through.

So in a strange way I do treasure those feelings even thought they can be dark but I treasure them because they remind me I am alive to feel and I am able to bring awareness.


No rest for the wicked, right?

Hugs,

R A C A

Looking at the First Grade Curriculum Finish Line :)

We are so happy to be able to stay home this weekend! The boys as of now have  two more reading tests each and then it is 'Goodbye' to our Little Lincoln First Grade Curriculum :)
This is very exciting and I am so proud of the progress the boys have made so far in catching up from the year we lost.

I had to laugh today when at lunch I asked Alexander if he was done eating and he looked me in the eye and said with his best Jamaican Accent 'Ya Man'. Connor looked at him all shocked and said 'Alex, you can't talk like this to Mama, we only talk like this to Papa!!!'. Cute! I actually like the Jamaican Accents they use but I admit I don't like it when they try to use some weird Street talk as they seem to pick up here and there when we are about. Remind me again that they are just 7!, well 8 in one month :)

I did have a really bad nightmare the other day and I am not sure where this came from, as usually my dreams center around current happenings but not so with this one ... at least I hope NOT!
To make it short I dreamt I was summoned with the boys to a highly guarded Military Compound and was told that the Government will take over the education of the whole male children's population in this country. We would all have to hand over our kids and we will get to see them again when they are grown and 'educated' in a Military view point. I of course took offense and broke out of the Compound with three more boys in tow along with my two. The last I remember was crashing through a fence and driving as fast as I could to safely. Not sure where I thought I would find it - haha
Well, I was happy to wake up and realize I am still in control of my dumplings education ... what a sight of relief!

The boys also Graduated from their Snowboarding Program. Eight weeks of fun and they are at a high level 2 to low level 3 at this point. They were thrilled when their Instructor Sparrow treated them all to huge Chocolate Fudge Brownies to end the day. I am so happy with the success of this program and should you consider moving and you have kids I would keep an eye on living in Park County ;)

Hugs,

R A C A