'Asthma' update ....

I admit I was getting very discouraged about the effect the Inhalers had on Connor and his cough as his cough is still there BUT it does seem less to me.
I said I was going to wait one week and then contact the Doctors Office BUT thanks to my precious friends (Monica & Kim) I was informed it can take up to two weeks to see improvements, so I do feel his cough is getting less and we are just now at the one week mark :)

In every other regard the boys are doing great and school is going smoothly, thanks to my friends (Sonya & Heidi's Timer idea) :) We were able to Ski/Snowboard two days ago and this brought a lot of joy and happiness to all of us :)

We are also one week into my Juicing Adventure and I am proud to say that Connor is as excited about this as I am. We have been making one to two juices each day from any kind of mixtures ... Apple, Pears, Oranges, Kale, Lettuces like Spinach, Sweet Potato, Carrots, Ginger, Radishes, Lemons, Limes Cabbages, Tomato's ....
Both Connor and I feel more energetic and better all around. I also started to cut out Pasta, Rice, White Potatoes, Breads and meats. Not easy but not as hard as I thought ;)
Also no more Soda's and Coffee for now BUT I am not going to cut out everything forever. I want to balance my intake to have two or three 'treats' a week but the majority of what goes in my body I want to be unprocessed and 'real' food.
I hope I can stay on track and the juicer truly helps a lot on this new adventure ;)
We also added a 'Biggest Looser' Program here at home for the boys and I. We each take turns to be the 'Coach' each afternoon and work out together. I have to tell you the boys are hard Coaches and I am exhausted each and every time! - lol ;)

I have to finish on a very sad and heartbreaking note however. Rick Thomas, who I mentioned in an earlier Blog Post, passed away yesterday.
42 years old, at the top of his game and a father to three young children. Damn you Cancer! .... I can not express it any other way as it robs us of people that should NOT die yet.

Hugs,

R A C A

Adding Asthma for Connor .....

Today was the long awaited Appointment with the Pulmonologis! But first we got to see our beloved Michelle Sutter at TCH who looked over Connor and his progress when it comes to his JDM :)
She was very impressed with his strength and how well he looked. She asked about Mouth sores and when we told her how Connor had them continuously she said she would ask Dr. Soep and see if she be willing to stop the daily Folic Acid Pill Connor is one and switch instead to Leucovorin one a week, to be taken the day after Connor's Methrotrxate/Chemo Shot :) Dr. Soep gave the all clear and Connor is happy to give this a try :)
After we finished there we had 10 minutes to go up one floor and check in with Dr. Stillwell, the long awaited Pulmonary Appointment.
We might not be the happiest about the diagnosis but Connor and I were very impressed with the visit. Dr. Stillwell was very throughout in his questions and his team that worked with us was very nice and attentive. We are so lucky when it comes to the medical teams we find in, first Chicago, and then Denver!
First Dr. Stillwell asked a lot of questions and then Connor was handed off to a lady that took him to complete three lung/breathing tests. This took about 30 minutes and then he came back after receiving an inhalation with Ventolin. Connor then had to wait for 10 minutes before they got him again for one more test.
The tests went very well and the reason why Dr. Stillwell is pointing towards Asthma is due to his breathing improving by a big margin after taking the inhaler.
So we are now adding to the medical lineup:
Ventolin HFA 90 mcg per actuation  and 
QVAR 40 mcg

Of course I looked it up and it is such a common thing to have... 24 Million people in the USA have it and 7 Million of those are children...

I am sad because it just adds one more disease/illness on Connor's pretty impressive lineup already...
Tether Spinal Cord Syndrome, which he had surgery for at age 2 but we were told then that reattachment's can happen at any time in his life, which could cause him to be paralyzed and the loss of all his bladder and bowl movements..... 
Juvenile Dermatomyositis (JDM) ... we already know there is no Cure for this, and now
Asthma. Fairly easy to control but also no Cure.

8 years old and what a weight to carry! He is at an age where he wants to know everything and research everything and I try to not let him as I think it is very hard for a child to look at the what could be but as we know might never come to term ...

The best news of the day and that had us all smiling was the compliments the boys got left and right about their manners, and on how handsome they both were. I tell you, emotionally we got spoiled today tenfold :)
The lady that gave Connor the lung function test told Dr. Stillwell that she had never worked with a young boy that was that polite! The Gentleman that explained to us how to use the Inhalers also told us what amazing young men they were and how polite they both were. I was so proud to see them use the, Yes Ma'am, Yes Sir, Thank You and looking people in the eyes. They shook hands and thanked everyone for their time and I was just smiling so much at them!
I am very proud of both my dumplings tonight! They both commented on this when we had lunch on how they usually get those compliments when we travel, in Airports and in Airplanes, from passengers and flight personal :) and now they can add The Children's Hospital as well :)

Hugs,

R A C A

New Year Paper Organizations & Tax Season .... :-O

Every year I seem to fall into the same pattern. I know we are spending a lot of time and money on medical matters but I never have a true concept until I go thru all the files to clean out the 'old' year and make room for the 'new' years paper trails. Some of the files and documents are needed for the tax season and as always it can be a very sad and sobering feeling....

This past year we drove about 4600 miles just to cover Medical Trips.
Our Medical Out of Pocket expenses for 2012 were around $8000. Now this number I should be happy about as it is lower then the previous years but I guess it is hard to be happy about any expense that I feel should never be when one is insure and has a great coverage .....

On to better things ...
Connor is up and moving again and had his first Therapy in the year 2013 yesterday. He decided to have his PT in the pool again and loved it.
The cough is still there and still continuously so we had some stares in the Waiting Room but we know it is not contagious and had nothing to do with the flu so we just have to grin and bare it when we are out in public. I truly can not wait for the Appointment with the Pulmonolgist next week! Luckily we will also get to see Dr. Soep and her Nurse Michelle, who squeezed Connor in so they can take a look as well when they heard we will be at TCH :)

Today we had our third Snowboarding Session in Breckenridge and the boys loved it. The day was beautiful weather wise as well. Sunny, clear skies and NO wind. The temps read 37'F on Peak 8 which seemed so warm with the sun reflecting off the snow. I wish I could have had skis and hit those slopes as well :)
Instead I relaxed and read a book :)

I am glad the weekend is almost there. Of course for us Saturdays are also School Days but that's okay :)

I have no current news on the Thomas Family but had one e-mail a couple of days ago that he is in a great deal of pain at this time.

Hugs,

R A C A 

Goodbye Flu, still battling yucky feeling and cough for Connor and thoughts about Rick Thomas and his Family!

So Connor finished his Tamiflu medications and while his fever is gone he still feels yucky and the cough he had now for weeks and weeks is still here.
So now we are back to waiting until the 24th this time for the App with the Pulmonologist.....

Alexander, who was put on the preventive Tamiflu, as well as Ron who is on Tamiflu for prevention, are both doing well and not showing any symptoms :)
Yesterday that meant that Alexander was able to go Snowboarding with me to Breckenridge, while C Bear stayed home with Ron :)

We got some very sad news last night which prompted us to head down to C-Springs today to drop off a little Care Package for the Thomas Family. Now we never met this family but as you might realize if you work for American Airlines you are part of a huge Family. While there might be discontent between Management and the Labor Groups, the Employees over all try to stick together and look after each other. 
Rick Thomas is/was a fellow AA Pilot, an FO on the Super 80, who commuted to DFW from C-Springs. Heartbreakingly we found out through the AA Pilot Chatroom that he was diagnosed a while back with a very rare form of Kidney Cancer and that has no cure. Yesterday he was moved from the Hospital section at Penrose to the Hospice Floor. Having had two Family members in Hospice we know very well what that means ...
Now the reason I feel it is a real Heartbreak is due to the fact the Rick is still very young, early 40's with a beautiful wife and three gorgeous and young children. 
If anyone is interested in helping them or following there story you can do so on Caringbridge:

http://www.caringbridge.org/visit/rickthomas1

As to us we are hoping to stay home for the next few days as each outing we do now undertake seems to strip Connor of any energy he has....


Hugs,

R A C A

Connor Bear...

There are those moments that just pull on my heart and Connor has done this all day long....
Connor had a fairly good day but was starting to feel yucky tonight. Maybe taking him out of the house to pick up the prescription was not the best idea after all...
His fever was up again tonight but what was really hard for him was bis coughing. He coughs snd coughs and he just looks so small and tiny sitting in his 'Sick Room' all day.
The boys take such great joy of being allowed to sleep in Mama and Papas bed when Ron is out of town that I was worried Connor would feel bad for being quarantined in the Guest Bedroom but being such a great patient who truly does what I tell him, he just snuggled down in the sick bed and never complained once in the last two days.
How lucky I am to have a son who hates being sick all the time and cries about it at times BUT NEVER fusses when told what needs to be done to get him better.

So this is for my oldest son who is sick more days then he is healthy but who keeps fighting and pushing on!

Both my dumplings loved watching the Wedding of Rebekah and Ramone online while snacking on Cake. How grateful we are that Technology makes it all possible to be a part f an Event even when we were so many miles away....

So Congratulations Mr. & Mrs. Lowery!

Hugs,

R A C A

Elizabeth Bailey

In the last three years the circle of our friendships has shifted in some regards. Many of my beloved friends and the boys friends always stayed at our side and are still here with us! 
Some we lost,  but we also gained a lot of new friends into our life that changed us and our perspective in so many ways.....

If you read this blog then you heard me talk about Connor's and Alexander's lovely and beautiful friend Elizabeth Bailey. She is a Classmate of theirs at Cottage School and the relationship between the kids but mostly between us Adults has developed into something purely beautiful. Elizabeths Mom, her Aunt and Grandma have become a form of Therapy for me as I can be myself around them with my worries and my fears and they completely understand and know where I come from.
Now I am posting something below that was written by Elizabeths Aunt, Avonlea, thanks to an FB challenge. She gave me her permission to put a copy of her note here on my blog. When you read this you know why this Family has so much Wisdom and understand the worries and challenges Families face that have Children with no Cures. I am in awe of them because of all they went thru they still face people around them with nothing but kindness and determination....:

:Ok Anke and Alia, here you are! You know how I feel about facebook games but for you I will ;) 

When I was 21...There are two huge events that mark my 21st year, one painful and scary, the other joyful and amazing: Ecmo and pregnancy. 
My 21st year started out in August of 2010 with life seeming like it was finally normalizing after a very rough couple of years. A year and half prior to that my niece Elizabeth had been diagnosed with cancer and while she was still hospitalized Coe and I relocated from Pagosa to Red River, NM for a job. We were in Red River and were extremely tied down, Josh and Alia were Monument, CO while Elizabeth was undergoing chemo and radiation treatment, and I was lonely and discouraged! 
But, by August, Alia's family had recently moved back to Pagosa, Coe and I were living in Durango, I had a job that I loved, our marriage was the best it had been up to that point, and all of my family except one brother was only an hour away. 
We enjoyed a beautiful fall, a wonderful Christmas, and a special trip with immediately family to visit extended family in the first of January. Elizabeth was doing absolutely phenomenally! Her brain tumor had been stable for a year and a half, and after worrying over her health for almost two years, it felt like a weight off of all of our shoulders for her to be getting back to her old self. 
A week and half later on a Friday I got a call from my mom while I was at work that Elizabeth had fallen and hurt herself. Sweet silly girl had been dancing in the kitchen in her socks, slipped, fallen, and hit her head on a metal trash can. She was unable to move her body from the neck down. I was immediately incapacitated with fear, in way that I had never been before. I felt sure that her fall was very serious and dangerous.
Elizabeth was taken to the local hospital where her parents were told (incorrectly) that she had just stunned her self and that her movement would slowly improve. By Sunday, she still was not normal so on Monday her parents took her to her regular drs at the Denver Children's hospital where she was admitted and treated for a spinal cord injury. 
The following weekend Coe and I spent in Denver. By Sunday evening she was doing amazingly well so Coe and I, Josh, and Elizabeth's siblings all headed back to Pagosa/Durango to go back to work leaving Alia and Elizabeth in Denver while she finished up her steroid treatments for her spinal cord injury. I breathed a huge sigh of relief from being told that Elizabeth was OK and there was nothing to worry about. I felt a little silly for falling apart so badly when I first heard of her fall.
The very next day, in the early evening- again when I was at work- I got another call from Mom saying that Elizabeth's oxygen levels were slumping some and they were going to move her to the PICU just as a precautionary measure. What seemed like hours, but was probably only a matter of 45 minutes that followed brought an onslaught of cryptic information that Elizabeth's oxygen was not coming up as it should and that they would be giving her a breathing tube that would most surely take care of the problem. 
This was all taking place in the middle of a snowstorm. The woman that I worked for - God bless her!- found out that the last flight from Durango to Denver that was scheduled to leave in 20 minutes (which I would not have made) had been delayed because of the storm. My amazing Coe helped me pack and drove me to the airport as quickly as possible. Thanks to an omnipotent God, amazing husband, and wonderful boss, I made it to the airport in time. 
While buying my plane ticket we received a call from a social worker at the hospital who was sitting with Alia telling us that Elizabeth was not responding to the breathing tube and was going to be placed on life support. We were told that it would take about 30 minutes to get her onto the Ecmo life support machine and that it was very dangerous and the chances of her surviving the transition were slim. Wow.
I had thought that we had gone through the worst with Elizabeth back in '09 when we was originally diagnosed. How wrong I was! 
The next half hour was the longest 30 minutes of my life- sitting in the Durango airport, crying out to God to save Elizabeth's life. I was so afraid. Afraid of loosing our precious girl, afraid for my sister to be in Denver alone, afraid of not knowing that Elizabeth was safe before boarding my plane and turning off my cell phone- afraid of the fear itself.
I was the only passenger on the plane that night, and the flight crew was amazing enough to give me as much time as I needed before taking off. While going through security, I got the call that Elizabeth had been put onto the life support machine safely and was stable. Praise the Lord! 
In the middle of a terrible blizzard, my flight to Denver was the smoothest flight I've even been on. I took a taxi cab to the hospital to find that Alia was not alone. Our cousin's in-laws had a daughter in Denver that they were visiting and as soon as they heard what had happened had gone to hospital to be there with Alia. What an amazing blessing that was! I also found sweet Elizabeth hooked up to a life support machine, but stable. 
That entire night was so full of miracles it still gives me chill - and a migraine- to think about. Elizabeth was able to be put onto the Ecmo machine safely; God sent people that we barely knew to wait with Alia; I was able to catch the flight from Durango- a flight that was scheduled to leave long before I could've even made it to the airport!; Josh made it safely to Denver over very bad roads a few hours after I did.
Looking back at that night it is so evident that God had a perfect plan for all of us! 
The next 5 days were spent with Josh, Alia, and I sitting in an ICU room watching and praying for Elizabeth. On the 5th day, they doctors decided to experimentally override the life support machine to see how Elizabeth's body would handle it. The idea was to bypass it so Elizabeth would not be relying on it at all and see how far down her oxygen levels would drop and then let the machine kick back on before they got dangerously low. 
Once again, God delivered a miracle that left all of us and the room full of doctors speechless- her oxygen level did not change! Her body kicked in and was doing exactly what it was supposed to do! After a decent period of time with her functioning without the life support, the decision was made to remove the machine completely. 
The Ecmo machine was removed from her body, and she did just fine without it. We believe that she ended up on life support because she caught RSV in the hospital and her lungs responded adversely to the normal treatment. Elizabeth had a long recovery road ahead her. She was in the hospital for several more months doing extensive therapy and learning how to walk again. 
Those months were hard months, but they were also really special months of blessing for Coe and I as we had the opportunity to travel to Denver with Shane, Garret, and Kaitlin almost every weekend to see Elizabeth. Those drives back and forth hold a lot of sweet memories for us with those 3 kids, and we are so thankful for that time!
Like the amazing little girl that she is, Elizabeth fought her way through rehab and was released from hospital in April. In order to be close to her doctors, Elizabeth's family decided to permanently relocate to the front range.
On May 1st, 2011, Coe and I discovered that I was pregnant with our first baby! We had been married for close to 4 years and had decided that it was time to start our family. We really enjoyed our first few years of being married without kids and establishing "us", but looking back I sometimes wonder what we ever did without our Hannah!
My 21st year ended with a recent move to Manitou Springs in order to be close to Alia's family. Coe went back to building with a contractor in Woodland Park, we lived in a beautiful town home right in downtown Manitou, and I focused on sleeping a lot and growing Hannah! Twenty-one was full of heartache, joy, and lots of change! I'm and so thankful for God's faithfulness through it all! 
Today- now at 23 - we are living in Woodland Park. Hannah just turned 1 on December 25th and she is the light of our lives! Coe has one more week of building before he starts college classes to become certified to be a power lineman- another huge change for us! I am loving most of all being Hannah's mom and living just 5 minutes from my nieces and nephews! I also have been incredibly blessed by the opportunity to work from home managing vacation rentals. I should mention that Elizabeth has made a beautiful recovery from her life support expedition. She has not fully regained her physical abilities from her spinal cord injury, but she is a happy, healthy, and beautiful 8 year old and we are SO thankful for her. ♥"

Influenza and Chronic Cough ....

So the Influenza has decided to visit our house this year... I admit it came unexpected as we went in to see the boys Pediatrician yesterday afternoon as a check up on the chronic cough Connor is having and also a new assessment on Alexander's ADHD Medication.

We arrived for the 4 pm Appointment and it was very unusually for us in the form that we had to wait for almost 45 minutes to see Dr. Maynard.
The boys each were weight and measured and the Nurse actually stepped back a step when she took Connor's temperature which came in at 103.2'F.
Now you might think how I could miss this but truly I had no idea he was running such a high temp and neither did Connor act as if he was sick beside the constant coughing.
Connor has had a low grade temp on and off now for over a month. It would stay around 100 most of the time but 103 was definitely a surprise.

Dr. Maynard right away order the Flu Test (Nassal Swipe) and Connor was awared the Number 18 as in the 18th child Dr. Maynard diagnosed with Influenza just yesterday alone!
The whole Appointment lasted until 5:45 pm and we made it up to WP a bit after 6 pm. I went to Walgreens who was out of the Tamiflu, from there we rushed to Safeway who was also out of the Tamiflu. My last stop was at Walmart and to my happy surprise they had one pack left!!!! Now I needed to fill two packs but this got us started and I was happy. Now they said it would take about 45 minutes to fill the order so we went to get a bite to eat. This is the one huge disadvantage about living outside of a town. It takes to much time to run home and back that you are stuck to wait it out. It was finally filled by 7:30 pm and we made it home by 8:10 pm. Both boys went straight to bed and I got busy online to e-mail with Dr. Soep and inform her about the turn of Events.
We emailed back and forth and Thanks to Dr. Soep she contacted Dr. Stillwell so we could move Connor's Pulmonary Appointment, which was scheduled for today at noon, back for two more weeks to the 24th.
Everyone agrees, Dr. Maynard, Dr. Soep and Dr. Stillwell, that the Chronic Cough is unrelated to the Flu but of course it would hinder Dr. Stillwell in making an assessment on a child with the Flu, not to mention he is considered very contagious so we do not want to expose and take Connor out right now.

This sadly meant my txting with Ron and us calling off our trip to Texas today as well.
We were all so looking forward to watching the Wedding of Rebekah and Damone and being a part of it. Connor and Alexander were very heartbroken about this but in all honesty this is not a gift we want to bring to fellow Travelers and a Wedding Party ... I am sure they don't need to be exposed to the Flu. I leave that to others to pass along and don't want the blame of this one ;)

So we are hunkered down now here at home. Connor is set up in a 'Sick Room' in our Guest Bedroom and is having a big supply of Water and Netflix Documentaries. I might have made a mistake to hand him a Bell as he rings it about every 15 minutes - lol
Alexander was upset that we would be moving on with school but I told him his pay off for not getting sick will be his Snow Boarding on Friday. That made him realize he rather stay healthy if we can .... I just need to figure out a way now to get that other script dropped off and another round of Tamiflu Ordered. Technology is not as advanced as I wish as I would love to do this all from home without having to drag everyone into the car just to drop off some paper :(

A HUGE THANK YOU to my wonderful friend Monica Forss!!! She was an Angel in listening to my txting/venting all afternoon :) It is truly great to have friends that just listen but also help you or in her case gave me a huge smile when I first told her Connor was diagnosed with the Flu. The first word she txted was exactly how I felt but would not say and that made me smile!!!


Hugs,
and hope for those of you that are not sick yet that it stays that way!!!!

R A C A

Mind over Body?

Have you ever wondered how much control your mind has over your body? 
and do you believe your mind or your physical body is stronger in a fight about willpower?

I admit I do this every time I get sick. I believe my mind can override any ailment my body might have, which to 98% of the time means my Asthmatic Bronchitis.
I battle this about two to three times each year for the last 14 years and every time I know when it is starting to act up as it starts with a slow burn and bubbly feeling on my lungs. Then my breathing gets affected as in me having to take very shallow breaths because any normal or deeper breathing causes those painful coughing fits that end up giving me Migraine like headaches.

Well, I love living life and being on the move, so I detest this with every fiber of my brain...
I knew in my heart my Bronchitis was returning about two days ago. The boys have started up with head colds and when they get a plugged up nose I will get issues with my lungs. My last battle was never cured so I knew the last Antibiotics and steroids where never enough but since my lungs sounded better the Doctor did not order anything more even thought I told her I still had that slight burn. So this was laying low and only waiting for a trigger to set it up ...

To make a very long story a bit shorted, we had planned a trip to Ski and Snowboard today for a while out. Those plans were made right around Christmas and if you know me then you realize that hardly anything can stop me from going Skiing!
Last night was very painful and I got very little sleep thanks to my lungs. We had planned to get up at 6:30 am and head out by 8 am. I finally 'passed' out from exhaustion by 5 am. I almost jumped out of bed when I woke up at 7:30 am to see everyone else still asleep as well!!! I woke up my husband and told him we needed to get moving when he looked at me and said we are NOT going. That I was way to sick and needed to stay in bed ...
It took me a good 30 minutes to talk to him and convince him that we needed to go....
See, my issue is that 'yes' my physical body as in my lungs might not be up to speed but my heart and mind NEEDED this ski day. I love love love being on ski's and out in the fresh air. There comes a huge piece of happiness and peace for me with this Sport and I did not wanted to see this day slip away ...
Finally, Ron conceded but not to happily and by 8:30 am we were on the road.

Now came obstacle #2 .... every minute we were in the car heading towards Monarch Mountain the Temperatures dropped with a record of -18'F. Ron kept looking at me and telling me that up in Alaska they would close a Ski Resort if it got below -15'F. So I sat their in silence looking at that Temperature Gage and willing it up ... all this while focusing to breath shallow so I would not get into any coughing fits....

The End Results was we arrived in Monarch at Temps of 4'F!!! Sunny Blue Clear Skies and we had a most wonderful day. My cough slowed down a lot when I was out on my ski's and it only tried to act up when we went inside the Lodge for lunch and later a Hot Chocolate Break.

We are home now and I feel wonderfully recharged and happy. How my lungs will do tonight is still up for the open but for now I am so happy we went.

On Connor's Medical News we thought we saw some improvements in his coughing yesterday but he coughed nonstop all morning as well but it stopped for most of the day as well. Not sure yet if I call the Nexium a success but he will keep taking it and on the 8th we will see Dr.Stillwell the Pulmologist and see what his opinion is :)

Hugs,

R A C A