COS DFW ANC SEA and hopefully DFW COS next ;)

Oh the joys of being nonrevs are second to none :)

But important events first! I finally got to see my beautiful daughter again but also have some priceless cuddle time with my two gorgeous Grand Daughters, Harlow and Cadynce!!!! What Joy and I wish I could bottle it all up :)
I also was so thrilled and happy to see Celeste who was such an amazing friend to take time for us as well! Alaska is of course beautiful and I do love the food there as well but seeing Family and Friends is just the best thing in the world!

The boys and I were super lucky to start out this four day adventure on Saturday thanks to Ron's last flight up to AK. We were so spoiled in First Class on both flights up and the flight crews were fun and attentive. Wish AA realized what a great team they have! The boys were so proud to know their Dad was flying the plane and how we loved the personalized PA :)

We had fun from the very beginning to the end when we were faced with an oversold flight home. Thanks to the wonderful Agent there, Kim, we got a heads up and were able to leave the Boarding area to get tickets on Alaska before AA finished Boarding. As it happened even Revenue Pax did not make it on. We had to run and rush to make the 9:30 pm flight out to Seattle and how thrilled we were to face lots of friendly and helpful Alaska Airlines Employees!!! We made the flight by about 5 min!!!

Now it is 3 am and we are sitting in Seattle until our next attempt on AA happens in 3 hours. For an Airline in BK there sure are a lot if full full flights! Wish us luck!!!

I do have to say that not all went smoothly with my two travel warriors. My two dumplings cried and cried when they realized we had to fly out on Alaska Air. They did not like the fact there were no movies to watch but did like how nice everyone was to us.

Hope you are all having a fun weekend! I am looking forward to seeing a bed in the near future ;)

Hugs,

R A C A

Forgot all about Therapy!

All this typing on my phone in my last post and I forgot all about telling you about Connors busy JM related day yesterday.
He started out with 9:30 am Infusions and ended the Day with his Water Therapy that began at 1:45 pm. When the day was over Connor could barely walk as this is how weak and sore his muscles were. We made it an early night and I am happy to say he is walking today even if slow :) just in time for our trip up north to see Niki and my two gorgeous Grand Daughters!!!!!

MAPS Testing, Infusions, Therapy and more ...

So much has been going on in the last couple of days so I have some catching up to do ;)
Two days ago, the boys took the MAPS Test at Gateway and we went in feeling very confident on where they are academically :) well, this mommy who was not looking at the test results the right way thought both my dumplings failed miserably. Luckily Mrs. Owen calmed me down and told me the front graph was showing an older grade and that I need to look at the numbers instead! Lucky for that one!!!! Both my dumplings are were they are suppose to be and Connor even jumped a couple of grades in reading .... Happily shocked at this one ;)

After the test I decided to take Connor home as a day at Cottage plus the testing would be way to hard for him. I decided to leave Alexander in school as he had running practice after school as well. Now the second call was a huge mistake as I found out later!!! I should have taken Alexander home as well as my youngest dumpling decided to act out in every form possible. He kept our lovely Mrs. Struble on her toes all day and not in a good way. Alexander loves Cottage School and therefor his punishment is him having to stay away for a while. Since he was right on track but not as strong in his testing numbers as Connor this will benefit me so I can put more time in with him at home. So win win for me ;) Connor is thrilled of course as he has been begging me to stay home and has said the stress of our full schedule each week was just to much. So now we will stay home bound for a few weeks and see what progress we make.

The good part about yesterday was the wonderful experience Connor and I had looking at the Paintings at Park State Trust Bank in WP. Connor and I were thrilled to get a private tour with the owner and the education was amazing! Connor loved the Mattise, Picasso and the one painting from a local boy here on WP. It showed me it is time to pick up the pace and start touring Art Museums.

Now as for me ... Can you imagine the look on my face when I went in for my teeth cleaning to hear that possibly my whole tooth ache problem was not caused by my lovely tooth or gums but from my sinus issues???? All this do a cold or allergy. Darn ;)

So I told You so nicely that we will hunker down at home for a while but that won't start until Tuesday next week because today we are on our way to Alaska. We just arrived at DFW after some nervous minutes watching Frontier Passengers trying to scramble on our AA flight due to their Frontier Flight canceling. Luckily we are tough Nonrev Warriors and we did make it out, even in style up front ;)
The good news is the flight up north is wide open but the flight back is red. So we see how much time we get to spend in beautiful ANC.

Hugs,
And no pictures today as I am typing this on my lovely phone :)

R A C A

Landshark Race # 2 and a very lovely Day!

So many things went well today :)

This morning we started school around 8:30 am and we were DONE at 11 am! The boys just rocked and were focused and before we knew it they finished their videos, sailed through their Lincoln Pages, plus Cursive and even added one Art Lesson. We were so motivated (well me more then them) that I talked them into cleaning out their bedrooms,. Which we did in an amazing fashion. Right now Connor asked to have all the Playmobil, his Costume Box and his Stuffed Animals and Alexander claimed all the LEGO, his Costume Box, Stuffed Animals and some Action Figurines. Everything else went out. Well, again some will go into the Attic and some will find it's way to Mrs. Strubles Classroom and the Ducky Bag :)

After this it was free time for all of us and then heading out early for the Races so we could stop and run some errands. I seem to always run out of Printing Ink :( the good part was me picking up some ingredients for some yummy recipes that Pippi gave me the ideas for on her Cooking FB Page. Pippi is a Vegan and a huge inspiration for me as she is a very healthy person and I am in need to get healthier.
I figure if I start out my family with one Vegan food a week maybe we can make a change in a little way that has some impact. I am even attempting to make my own Ketchup this week ;) 

I am in a very happy mental stage right now and I know it has to do with me being active this past weekend and realizing that I have to overcome the need to step back and close the doors when things seem very dark and scary, and instead trust the people around me that love and like me to make me forget for a bit about the worries and just to be silly and laugh for a while.

Tonight I want to thank all those amazing Mommy Friends who hugged me and who made me laugh and be silly during Alexander's Landshark Race. You know who you are and THANK YOU is truly not enough.
Connor was in amazing spirit and was running and laughing the whole time. He was a huge fan to Alexander, little Hannah, Blake and Joseph, and that made me happy as well.
No I am not on any happy pills right now, even thought this post must invoke that feeling. I think just moving and interacting has been a great Therapy.

Alexander got hurt yesterday and cut his thumb which was bleeding quiet a bit so that I told him if he did not feel up to it he would not have to race. Of course he wanted to and had his sight set on beating his record of 10 min and 11 seconds from last week.
He took of fast and came in at 10 min and 9 seconds. He ended the race falling to the ground and being as white as a sheet. I truly thought he would throw up but he held it together. It turns out he was really pushing himself as he told me he had to go and pee during the race. He said he ran of to some bushes and peed and then got back in the race. So truly he must have been going fast as I know my little ones bladder can hold a lot and he does not go pee in a fast way ;)

Sorry the pictures are out of focus but i did not realize I had the Camera set on Video instead of pictures.

Hugs,

R A C A

Dirty Girl Mud Run ... Fun and Therapy all in one :):):)

So yesterday was this long anticipated 'Dirty Girl Mud Run'. My lovely friend Anne Begley talked me into it and how happy I am that I joined this wonderful group of five women to race in support of Breast Cancer.

There was so much Camaraderie, Laughter and Friendship, even thought most of us only knew one or two of the group, well except Anne who of course knew everyone ;)
I admit I figured it be about the same as the Color Run, expect we would be getting muddy instead of colorful. Trust me, by comparing the two this one was by far harder and tougher on the body!
There were so many obstacles we had to crawl through (Mud) about 4 or 5 times. Climb over Walls, climb over a robe obstacle, huge tires, jump over haystacks and possibly I am forgetting a few.... - oh yes! We had to run about 300 meters through deep sand, now having wet and muddy shoes on that hardly wanted to leave the ground this might have been my hardest obstacle to over come of all - haha
Truly, the mud was also something else, thick with rocks and poky things inside. My 41 year old body came home with cuts, bruises and a couple of splinters ... and of course VERY dirty cloths. BUT in all strange ness I am counting on doing it again :) I just figure I have to get some motivation from Dana and workout more - haha

My three men had a fabulous time at the movies, watching Nemo again in 3D this time around. They wanted to stop at Bierwerks afterwards but it was packed due to the Oktoberfest in WP so they headed home.
I on the other hand got a nice ice cold beer right after our run, Thanks to the people that sponsor this race!!!! Every runner over 21 got one free alcoholic beverage and if that was not motivation enough for this German then I am not sure what is ... oh yes ... CHOCOLATES would have been great as well :)

So Thank You to this amazing group of women for letting me join you :)
See you all next year again :)

Hugs,

R A C A

Infusion # 4 since Flare

Today's Infusion Day started out very well and Connor's poor Nurse was on pins and needles after Connor asked her if she will cause him to bleed all over again. Talk about adding some pressure to her morning! She said she was concerned about this all week and was hoping today would be her and his lucky day.
We were thrilled for her that she did indeed get the IV in without a bloody little mess but we had to laugh when she then realized the hookup was backwards for the blood draw. Luckily she was still able to fill her 5 tubes and Connor was set up for his Solumedrol Infusion, followed by the Methrotrexate. He also tried to cover his metal taste by inhaling 4 Cheddar Cheese Sticks and we were on our way out of TCH for our traditional lunch by noon!
This time Connor wanted to eat at the 'Buffalo Place' at the Briargate Pkwy Center which turned out be Ted's Bar and Grill. It was very nice and I have to say there is a strange kind of upside that comes with my poor babies needing medical care and that is the traditional Lunch or Coffee and Cake Dates that follows each Appointment!
It is very cute and fun to have this one on one time and they take it very serious as in always opening the door for me and having wonderful conversation pieces.
Next week he wants to choose a Mexican Restaurant after we had Chinese last week and I was worried at first when we saw a Police Car parked at my beloved Apple Store only to realize they were there for crowd control about the new iPhone.

After we left, the Day's Event took his toll on Connor. He napped all the way home (1 hour 15 min) and then went back to nap from about 4:30 to 5:30 pm at home. After eating very little for Dinner he went back to bed and fell asleep again only for us having to wake him up for his Medicine. He also has been complaining about a Headache all afternoon and sore throat. I am always on edge knowing that each additional Infusion strips his Immune System more and more :(

Tomorrow, I am heading to Denver with an amazing group of women for the Dirty Girl Mud Run and the boys will have a play-date with their Papa, which I think is planning on taking them to a 3D Movie :) I know they be thrilled!

Hugs,

R A C A

School, a new Therapy for Connor and the CureJM Chase Community Voting

This is not some well used phrase I am throwing out but with all my heart I wish there were more hours to the day...

I feel really stretched thin in getting everything that needs to get done, done.

Of course I have a priority system in place and that is balancing the two biggest factors together: The boys schooling and the boys Medical needs. Both of them would keep me busy enough on it's own each week but together they make for long, long days and also cause huge exhaustion's at times for all of us.

We can not slack of in school or miss hours or we again fall behind after we made this huge effort to catch up schooling through the summer. The medical needs for both my dumplings are of course nonnegotiable and we can not in any way or form adjust this. 

Those two things alone pretty much take on all my energy and to then place all the other needs and demands into my life make me feel tired and often unfocused.

I wish I could lay on someones couch and talk about my worries and fears and the stress I am feeling but even that hour would seem as a complete waste as I need that hour to get things done so I probably would even drive the Therapist crazy! AND add more stress to my life. Oh, and I do NOT have time for that!

On this note:

Connor had his first Session today with Dr. Dona Sanders in CSprings and I think we got a perfect match. She seems like a most wonderful person who understood Connor to a T. It actually seemed funny when she told us half way through the session that she thinks her and Connor have a lot in common in regards to being worriers and having a hard time letting things go. 

His first Homework is to try and stop worrying about things he has no control over (now in my eyes that is easier said then done but since I am trying to practice this now for a while myself I might be able to help him out a bit or mess him up more ;).

His second assignment might be on the surface easier but for Connor might be equally as hard ... No more TV or reading material that causes worries. So no more News Shows and Newspapers and no more Animal Shows on the Animal Planet or Discovery Chanel as she knows how upsetting even those images can be (Well, she got this right as Connor does cry when we watch Planet Earth). She said she has the same rules for herself and stopped feeling guilty about not being up to date on the news as they were to much negative influence to her life as well).

So we will have to stop watching the news together as a Family for now and I just have to catch up on it when the boys are in bed.

Who ever said you should just stay away from scary or emotional movies when real life shows are part of the stress? Wonder how I can turn off the stress JDM and AA is causing me along with other stress factors?

So we will be back in two weeks to see her again, and Connor said he likes her very much and looks forward to it.

She also made Connor so happy when she said that he made her day and how much enjoyment she got from talking to such a bright and educated little boy that had the best manners she had seen in a long time.

Looks like a love match for me!

We are back in school now and this week has been really tough to stay focused on all the positive as I am just tired, -mind and body-.

So all those times my husband asks me if I want to trade jobs? .... YES ... IN A HEART BEAT RIGHT NOW ....

 

NO that does not mean I don't love what I do but the work load on top of all that entails taking care of a family and a house feels crushing at times.

Oh, and Connor still wants to stop Cottage School but he did have some very good days this week. Both boys loved Science, especially when all the little ones were able to run around the school trying to catch bugs. The Health Screening also went very well with both boys passing everything, except Connor who had Depth Perception problems. I found that ironic as Alexander passed this test in flying colors this year while he was the one that failed it last year!!!

Oh and here is a conversation Connor and I had last night:

Connor after I put him to bed:
Mommy, is today the last day to Vote?
Me: Yes
C: did you tell everyone to vote?
Me: Yes
C: what if not everyone voted?
Me: that be sad but you can't force people. Why? Would you be very upset at them?
C: No, I still love them but it is sad because CureJM needs to win so there is money for Research! Will you find out tomorrow if we won?
Me: Yes, but I know we won already because we got so high up in tne standings, competing against 7000 Organizations and we are fighting against an Orphan Disease. So don't worry and sleep tight. Mom has it all covered!!!

Thank You to all of you that listened to me for the last couple of weeks. You truly are Connors Angels!!!

And now to the Drum Roll:::::

As of now we finished the Chase Voting and if it holds we are in the 20th spot. That would mean CureJM could receive $50,000 in Research money!!!!! That is amazing. We pulled in over 8000 Votes and for an Orphan Disease this is very good. You have to remember there are only 17,000 cases of JM/JDM and not everyone has computer access. So for those of you that voted, be proud of yourself for helping Connor, his fellow fighters and CureJM to get another shot at finding a Cure. Thank You, Thank You, Thank You!

Hugs,

R A C A

Landshark and going strong!

We as a Family are super proud of our youngest who had his first Landshark race yesterday and did amazing in it.

The best part of Alexander running the 1 mile race was the look on his face on how proud he was of himself and the huge smile he had when the race was finished. I did not get the exact time but he was around the 10 min mark.
There were, I believe, 5 Elementary Schools 'competing' against each other and it was neat to see so many friends that have kids at other schools and to visit with them. Pippi and I even took use of some Picnic Blankets to sit and relax while the kids all warmed up for their races. I do have to insert here however that it was C O L D. Sunny but very very chilly!!!!
Alexander was super worried I would miss taking Pictures or take a Video, which made me laugh, as anyone that knows me knows this is something that would never happen. Hey, I am the Mom that averages about 300 pictures a months, with plenty of practice before on Niki who can attest to this as well :)
So I have pictures and Video to proof what a little Rock Star my baby boy was and is!

Connor, who has been doing really well those last few days had a strange reaction to the whole race. In the morning he was very busy making a sign to cheer on Alexander and he was by his side all through the preparations for the race. Once the kids took off he started crying and sobbing none stop. That lasted for a good 20 minutes or longer. He cried because he said he was missing his brother (who was running the 1 mile loop) and that he was worried he would get hurt. It came so unexpected and no matter how much I told him his brother would be back any minute (10) he kept on crying.
On the upside off all this, my two boys who love to argue and fight with each other, were hugging and telling each other how much they loved each other all night long after this. 

We had a little celebration dinner and between this time to the time we got home Alexander lost his Ribbon. That was a whole new heart break and I so hope we can get a replacement Ribbon!!!

Today we had school at home, plus Cottage School, which entailed Picture Day. Connor dressed up in a Sweater and Alexander chose to wear the CureJM Shirt in honor of Connor. Very sweet.
Even thought the day went well and Connor had a Playmate from 5th Grade during Recess, plus a nice Conversation with Mr. Davis, he still felt tired most of the time and begged me to not have him come back to school. I did tell him we took a commitment and we will discuss this come Spring and the new sign ups. This I did because Alexander loves Cottage School and in no way or form do I want to take this away from him right now. I would be hard to drive back and forth to justify Connor and I think he has to learn that some things we have to do even if we don't love them. Plus, most importantly, I know the Gateway Community is a safe place for him and I am in the classroom during all their schooling.

Tomorrow will be Health Screening at the school so we see how this plays out.

If you are on FB then you know it is hard for me to stay out of the Political Agenda but then it is hard to be quiet at something that impacts you directly. AA is still a huge worry as is Healthcare and Connor's future living with a Disease that has no Cure and gives him a preexisting Condition for the rest of his life. That alone can keep me up at night knowing my Baby will grow up with this and at one point will have to face this by himself.

Hugs,

R A C A

Goodness ... more happy news ..... ;)

Could I be on a roll? well, probably not after just two postings but as of now we are in a good mental place here at home and the last two days have been mostly about laughter and having fun.

Yesterday, Alexander had to finish catching up with 2 more hours of school work and after that it was freedom that translated in outside playtime, nap time, movie time and even some Playstation time.

My favorite, beside the nap!!!, was our 1 1/2 hour Nerf Gun Spy Adventure. The boys and I went for a walk/run around our mountain and to get the newspaper (which by the way was missing, so I am guessing Ron was lucky to get it when he left at 6 am on Saturday morning for Caracas, Venezuela).
On the way back to the house the boys ran ahead so they could station themselves at the top of the driveway to ambush me. I decided to get off the driveway and back track around them through the Forest and made it in the house undetected to get my own Nerf Gun to approach them from behind. This whole thing started a hide and chase that lasted for a good 1 1/2 hours and involved a lot of laughter and exhaustion as we were running like crazy.

After this we decided we deserved some down time and we found a great channel, Science, that showed show after show 'How things work'. What a wonderful show. Very educational!!!

Alexander and I managed some great one on one time as well and we read a couple of books on ADHD for kids. It is amazing how much I am learning and how fun he has to read through them with me and get engaged in it, plus opens up to talk about how he has been feeling. This morning, while Connor is still sleeping in, we sat at the sofa for over an hour just cuddling and talking.
I also had to start a fire in the fire place as it is C O L D outside. I love Fall and I so hope this is not the start of Winter!!!

On a JM news front, Connor has been in VERY good spirits most of this week and this weekend. I am wondering if the tapering of the Prednisolone form 4 ml to 3 ml could have this big an impact on his moods???

Well, I am leaving this short as my youngest just showed up with breakfast for me to have here in the School Room. He made me a bowl of Lucky Charms, so how can I resist that one?

Have a fun Sunday! and Thanks for checking in and don't forget to Vote and Share!!!!!

Hugs,

R A C A

Focusing on the good things today ....

Now this should be hard for me to do with all that is going on around me but I am actually going to have fun just writing about nice things today :)

For one, Alexander and I had some very nice one on one time today. Well to be correct some of this time was spend with the Therapist Alexander will start seeing about his ADHD and some of his OCD, which I know he must have both inherited from me ;) Well my issues are not buttons but I know my mind can be all over the place and I do have huge issues with table settings and how my kitchen is set up ... especially my Dishwasher!!!!
The meeting with Mr. Chris was great and I think he will have some good ideas on how to help Alexander (and on the sideline me!) help to focus ;)

Afterwards, Alexander and I went to Starbucks for some Hot Chocolates and some fun conversations. It was lovely to see how plugged in my youngest is when he started the conversation about Libya and the movie that prompted all this out rage. i am not going to go more into detail as I said I want today's post to be only happy news but I was happy to see how insightful Alexander was and that he had some really great points to this matter.

On this regard I was thrilled that this week I got to see and witness several compliment coming our way in regards to our two dumplings. One e-mail from the teacher the boys see about their language skills mentioned them as quite bright, they have done excellent in the test about their speech and listening parts and their listening skills during instructions and stories were superb.
Now these above were not my words but came form the school! That made me a very proud mommy!
Then Mr. Chris at today's evaluation of Alexander told me at the end that he saw a very bright child in Alexander and that it would not surprise him to see his intelligence level is very high as is the case with many ADHD children and Adults.
So here you have it. We are all walking taller today - haha

the boys also had a lot of fun trying to build a Bobsled and I for one was grateful it did NOT work - haha.

P.S. On the Voting and Sharing front for the Chase Grants we are still lacking and if you are my friend on FB PLEASE go to my Wall and look at pictures there of three beautiful and precious kids that did not survive JDM/JM! We need a Cure and I know you have it in you to share the message and get your family and friends to Vote! Thank You!!!


Below I am going to post some pictures of the work the boys have been doing at school. Not all the spelling is correct but I think you get an idea of how much thought they put into their work :)

Hugs,

R A C A