Day 32 / 12 at TCH Kohl's House and World Rare Disease Day

I thought I go and mention the Kohl's House today :) As you all know we stayed at the Kohl's House in Chicago for 19 days. It is originally set up for Transplant patients and their families but they have taken in many families that have dealt with other diseases as well. It really was a heaven send place for us to take Alexander on rotating nights and not having to worry were we would be staying or how much it would cost. So I know that some of my lovely friends already like to shop at the Kohl's Department Stores but now you may know that the money you spend at the store and especially on the items they sell on your way out (stuffed animals and books) really do go towards a wonderful cause and it really works!

Cure JM Foundation Today is WORLD RARE DISEASE DAY! Help spread the word about Juvenile Dermatomyositis (JM) and other rare childhood diseases:

"In the United States, a disease is considered rare if it affects fewer than 200,000 Americans. According to statistics from the National Institute of Health (NIH), there are thought to be nearly7,000 life-threatening and heavily debilitating conditions affecting nearly 30 million Americans (1 in 10 people or 10% of the population). Despite the infrequency of each rare disease, the total number of rare disease patients in the United States is equivalent to the total populations of New York and New Jersey combined.

Some alarming statistics that are currently available include: More than half of the 30 million patients in the United States affected with rare disease are children.
Approximately 15 million Americans have rare diseases for which there still is no approved treatments and no research in progress. Approximately 80% of rare diseases are attributed to genetic defects, many which are untreatable and life-threatening.
In the 25 years since the Orphan Drug Act of 1983 was signed into federal law, the FDA has only approved approximately 350 treatments for all rare diseases combined."

Connor's day today was almost as busy as yesterday. He did not have speech therapy today but he had OT and PT. Someone also must have heard me when it came to my request for music because today there was a little concert for the kids in the Atrium downstairs. Connor loved it and even got a CD out of it plus 4 Guitar Picks.

So and if all goes well we are looking at 12 more days here at the Hospital and 'only' 5 more days for my Mom and Dad to arrive......

Tomorrow Ron and I will switch again and I can not wait to sleep in our bed again because the one think that keeps my brain only working part time is lack of sleep and lack of good nutrition, not to mention where does exercising fit in?

So take my advice and try to stay out of hospitals .. they are not healthy for you - ha ha

Hugs,

R A C A

Day 31 / 11 at TCH includes OT Video

In Chicago we always considered Saturday and Sunday our 'off' days since not much happened on either of those two days. Here however Connor still has some therapy on the weekend but it is not on a time schedule so we never know when someone shows up.

Last night went well as Connor got another sleep-aid at 8 PM and at 8:10 PM he was asleep. He woke up once during the night and then even thought our night nurse told him she would let him sleep in today he was still up at 7 AM. Hospital habits might be hard to break.....

Today I will try to add a video that I took when Connor had OT. In Occupational Therapy the Therapist try to get him to move independably which means trying to get in and out of bed, getting himself dresses and able to eat by himself. The Video shows him trying to put his house shoes on. If I am able to add it, it will show below this post.

Connor's and my highlights of today were at first a very anticipated visit from Ron and Alexander. I went to pick them up from the DEN Airport and Connor even talked his nurse into taking him to the lobby to wait for us but then started to go back when it took to long in his own words. Ron met up with him in the elevator and we all ended up with a nice lunch at the cafeteria. It was wonderful having the four of us together again even if it was for just one hour. I can say both looked happy so I know the trip to Alaska must have been just wonderful.

The second visit came as a surprise when Matt, Mark and a friend stopped by with yummy Pizza's from Mark's Restaurant 'The Denver Pizza Company'. Connor loved it so much he ate a whole slice and asked for more and especially loved all the meatballs that came on it. I had s slice and it was Divine :)

Connor had on top of his OT also PT and two Speech Therapy sessions today. The news is that it is expected for Connor to leave the hospital without a wheel chair. I do not want to be pessimistic but I can not imagine him walking fair distances within two weeks but I am open to be positively surprised.

Hugs,

R A C A

Pictures from Alaska

As most of you know Ron and Alexander got a little break from our medical adventure to go and see our beautiful daughter Niki and our brand new Grand Daughter Harlow Olivia. A huge incentive for my boys was the fact they got to stay and spend time with some of our most fun friends the beautiful Garcia Family :)

Hugs,

R A C A

Day 30 / 10 at TCH

8:40 AM here at TCH in Denver and I am waiting for Connor to come back 'home' to his room from his Breakfast Social Therapy.

Last night Connor received a sleep aid for the first time since we have been in a hospital because we are wondering how much rest he gets at night. He seems very tired throughout the day which does not help all the therapy sessions he is having each day.

Looks like all my new partners in crime who are having a sick child are on the same timeline this morning since I already got to talk with Kim and Dawn on FB this morning... So Thank You for chatting :) Oh, and we so loved 'seeing' the Miller family on Skype last night!

There are a few passions I have and one is listening to music. Unfortunately I prefer the noise level to be higher then might be good for me but that is why I love my Bose Headset so much. So for me this is a wonderful escape when I feel like getting away for a few minutes. So I am hoping for all my friends that are dealing with stress right now that you can find something that will do the same for you...

My mind is working on high today so I am brain storming again and I am thinking it would be wonderful if the hospital would offer a dance once a month for the kids here. It does not matter if you are in a wheel chair or not but who does not like to get dressed up and have some fun? So tonight my plan is to play my I-Tunes and have a little dance with Connor in our room :)

Connor is having an amazing day today. I can only assume it is due to the sleeping aid he got but he has been cheerful and accommodating throughout all 4 of his therapy session, 5 if you include breakfast. He walked to his PT today pushing his wheel chair and he even attempted to go up two stairs with the help of his therapist. Those are big steps for Connor!

He also got his one hour and ten mintues of Solumedrol in him plus the Methatrexate at 12:30 PM. Friday's are big days when it comes to Connor's drugs.

As fun we got to visit the wonderful Stenzel family three times today. First for a wonderful none cafeteria lunch provided by them from McD's for Connor and Chipotle for me ... heaven! Then we came back in the afternoon with some ice cream to visit some more. That lasted for about 15 min before Connor got hungry and wanted some soup. We came back again for about a 5 min visit before Connor got tired and wanted to go 'home' to his room. Connor got a huge treat from Emma which included the coolest coloring and arts and craft table. It has pockets on the side which were filled with all kind of goodies including Connor's recently favorite 'Oreo Cookies'.

Right now it is 4 PM and Connor just got some Tylenol and is quietly sitting in bed watching 'Horton Hears a Who'. We are all still waiting for him to go to the bathroom so we can get a stool sample and no luck yet. After having three packs of myralex he might now be facing a suppository :(

So and then way up North in Alaska Ron & Alexander seem to have a most wonderful time seeing Niki, Harlow, Celeste, Sammy & Tyler. Today they went to one off Tylers Ice Hockey games and I could hear Alexander rooting on Tylers team through Ron's cell phone. So anyone wants to guess what Alexander wants to to play now for a sport?

Thank You also today for Miss Ann who has been taking care of our home and all three of our dogs for the last 4 to 5 days. What an Angel!!!

Today Connor want's me to post his second favorite song that my computer gets to play for him a lot: (yes they are not your typical 5 year old song selections but those are the ones he loves so here it goes :)

Survivor - Eye Of The Tiger Lyrics

Risin' up, back on the street
Did my time, took my chances
Went the distance, now I'm back on my feet
Just a man and his will to survive
So many times, it happens too fast
You trade your passion for glory
Don't lose your grip on the dreams of the past
You must fight just to keep them alive

[Chorus:]
It's the eye of the tiger, it's
the thrill of the fight
Rising up to the challenge of our rival
And the last known survivor
stalks his prey in the night
And he's watching us all with the eye of the tiger

Face to face, out in the heat
Hangin' tough, stayin' hungry
They stack the odds, still we take to the street
For the kill with the skill to survive

[Chorus]

Risin' up, straight to the top
Had the guts, got the glory
Went the distance, now I'm not gonna stop
Just a man and his will to survive

[Chorus]

The eye of the tiger
[Repeats to fade out]

Hugs,

R A C A

Day 29 / 9 at TCH

Connor and I were wondering this morning if today would be one of the 'normal' days here at TCH with just therapy in the morning and us hanging out in the afternoon :)

Since I posted earlier yesterday then I usually do I will add one, well three, occurrences that happened last night. Connor had three little accidents in his bed within a 1 1/2 hour period. He peed just a bit but was confused about it because he never felt it happened. So I changed him and cleaned him up and told him not to worry. Of course I had to tell the nurse since they had to change the pad and they mentioned it to the doctor who ordered a urine sample plus blood work right away. The thought was it could be due to all the fluids he got during his surgery or possibly to see if his glucose levels were high. This is something they said needed to be watched since it can be a side effect of the Steroids he is taking.

So at 7 AM this morning Connor woke up and was dry throughout the night :) he still had to give one more urine sample however. So I will post more about this event when I hear back.

The funny part to me about writing this blog is how I can write about Blood, Pee, Stool Samples and throw up without thinking twice because. It is after all a medical journey for us. So hope none of you is skirmish in that regard - ha ha

At 7:30 AM today I took Connor to his little therapy breakfast social. He has breakfast with other little kids and two therapist monitor them. I believe it is speech and OT. It is a cute setup and it gives me the time to run down and get my own breakfast.

There was something on my mind last night and this morning and I am wondering a bit about it so please give me feedback if you like :) I see Connor making progress from were he was not even a month ago but then I have seen him decline with in a month prior to this. I look at him now and I am able to understand him and even enjoy this new aura he has about him. When the drugs are not messing with him he has now turned into a very articulate little boy who asked wonderful questions and has a composed and compassionate personality. He seems wiser beyond his 5 years of age and my question to those of you that remember him prior to December 2009 and have seen him now do you see the same change or is it just in my mind?

You might think it strange and our normal instinct when raising our kids is to protect and shield them from emotional upset BUT here is where I changed my mind the most. Our boys have met heartache, pain, seen people cry and seen kids being very sick from Chemo. And this is were the transformation has been the most ... I watch my 5 year old boys still being silly and funny but now there is also a calmness, kindness and composure about them and they are so much more compassionate towards others. You might think me crazy but this is the part I am the most grateful for. They have grown on a level that I could not have seen in them if all of this had not happened and this is were I do not regret this exposure at all!

Just got Connor's test results back and there was no rise in his glucose levels which is good news and almost all his other levels from the blood work this morning (they took 9 vials I believe) came back positive as well. We are still high in most areas but lower in the numbers from last week. His blood levels are still low however so he has to give another stool sample so they can look again for blood in it.

Therapy is going so so today and mostly because Connor is complaining he is to tired. He wants to take a nap but says it is to noisy in the hallway. His doctor asked him what it is she can do to help and he said to tell everyone to just be quiet! That's our son for now ... he can be very charming but is also very straight forward in saying what it is he wants or needs.

Our big highlights today were our visitors once again :) Lady Di came back today with Matthew which was pure heaven for Connor. It is hard to explain until you see it happening in front of you but the connection people have when they meet someone that has dealt with a serious disease as well is magic. I hope it is alright to mention it but Matthew battled cancer just two years ago and is now cancer free thank god. He was able to explain to Connor in such a great way what his treatment are doing for him and also why it is important to eat healthy even if you don't feel like it ... so let those protein shakes come :)

Our second visitors were as wonderful as our first on another level. Miss Caroline and Connor's twin friends Nathan & Jerrod stopped by and Connor gave out quiet a few smiles seeing them. Jerrod and Nathan also did a marvelous job pushing Connor's wheelchair which was a big event because he usually does not like kids pushing him. Connor did however decline after about one hour due to still feeling so tired. As you know I mentioned it before, just like his Mom when she does not get good sleep he can get very grouchy fast :)

I want to take a minute to Thank everyone that has Donated to the CureJM Firstgiving Page Connor set up. All the money will go towards research for a Cure and this will be our big goal when things calm down for us to find a way to help this cause. As Dr. Pachman said in in such a beautiful way ... her job will be done when there is one pill or treatment to make JDM go away for good.

One thing Ron and I have never done is ask 'why us'. I did ask God why not me instead of Connor but we do realize that we are only handed what we can deal with and the goal is to never see anyone else having to face a journey like the one Connor is faced with.

Hugs,

R A C A

Day 28 / 8 at TCH - Medi Port Surgery

Connor will be getting his Medi Port put in this morning at 10:30 AM.

When we went through the protocol last night again about the 10 hours of no food prior to surgery and the 2 hours cut off time for liquid I had to think that for Connor this is the 3rd time in 2 months that he will be going under Anesthesia. First it was the Muscle Biopsy, then the PICC Line and now the Port. This will bring him to 5 total if you recall his MRI when he was a toddler and then the following Spinal Cord Surgery. Just to think I met Adults that have never been in surgery and he has had 4 in the 5 years of his life.

Connor is holding up very well this morning and took a total of 6 medications already without the comfort of his Chocolate Ice Cream today and he did so without a complain and the only reaction he had was scrunch up his face. He is right now hooked up to the Solumedrol that will run for one hour. To keep him distracted are the wonderful movies we have received as gifts for Connor. On top of the list is Narnia one he got (out of many others) from the Burkhardt Family and Narnia two from the Simpson Family :) So know that you are helping a lot this morning :)

Today at Noon there will be a Conference as I had mentioned of the Doctors and Therapist getting together and talking to us parents plus the patient to show us where we stand. I just got a gift from our nurse Chinonye in regards to what she is hearing about our tentative release date. It looks like it is set for March 12, 2010!!!

Now it might be sooner if Connor makes lots of improvements and it might be pushed back if there are anymore set-back but by God it feels wonderful to have an idea of what we might be looking for :):):)

It is 5 PM right now and the Medi Port Surgery went very well :) I got to go into the surgery room with Connor and hold his mask for him while he got to play with his doctors I-Phone. As soon as he went to sleep I got out to make the Conference with Connor's Doctor Dr. Soep, his Rehabilitation Doctor, all three Therapist, Speech, OT and PT, his Social Worker and Phychiatrist. There also was someone from Family Life there as well. The set-up was wonderful in regards to each telling me how they felt Connor was doing and what progress he was making. It sounds like we are looking at being at the Hospital for two to three more weeks at least.

Connor did have a busy afternoon because he was on the go pretty much as soon as he was released from Recovery. When I arrived at recovery the nurses were laughing and telling me he woke up and talked non-stop and he truly has not stopped talking since. Not sure if the drugs he got for his surgery are causing this but if you remember Connor as the quiet one of our two you would not believe it seeing him today!

We also had some fun today in regards to Connor getting a visit from our Pastor Carlson and his lovely wife. It was truly up-lifting talking to both of them and it made us realize how much we miss seeing our church family. Connor was telling Pastor Carlson and his wife that he can't wait to go to Basketball Camp this year so I am crossing my fingers he will be able to participate at some level :) He also was overjoyed to get three new movies to watch and a most beautiful card ... So Thank You to everyone from the Lake George Community Church for the wonderful support and prayers. It truly is appreciated a lot and please know that God has been with us through-out this journey and shown us his presence through all of you.

We also got to meet the lovely Stenzel family today who came into the hospital today for their daughters treatment. It was wonderful talking to them and we hope we did not scare them off by Connor talking non-stop and me not doing any better. It truly is so good to meet someone that has been there, done that.

Ron and Alexander arrived well in Anchorage last night and seem to have lots of fun. I got some great pictures of Ron and Harlow and Niki and Harlow on my txt but can't figure out how to download them. As soon as I do I will post them :) Alexander got a very special treat today because Miss Celeste took him to no other but a 'Star Wars Exhibit' that is displayed in Anchorage right now. Can't wait to hear all about his adventures. So Thank You Celeste for giving this gift to Alexander!

Right now I am hoping for an early night for the both of us since for some wicked reason I feel tired today. Connor is the one that should feel tired but he is still going strong. I hope his non stop talking will stop by tomorrow - ha ha

Connor's favorite song right now is Major Tom and he asked me today to post it to his blog, so here you go ....

Lyrics for: Major Tom (I'm Coming Home)
Standing there alone, The ship is waiting. All systems are go. "Are you sure?" Control is not convinced, But the computer Has the evidence. No need to abort. The countdown starts. Watching in a trance, The crew is certain. Nothing left to chance, All is working. Trying to relax Up in the capsule "Send me up a drink." Jokes Major Tom. The count goes on... 4, 3, 2, 1 Earth below us Drifting, falling. Floating weightless Calling, calling home... Second stage is cut. We're now in orbit. Stabilizers up, Runnning perfect. Starting to collect Requested data. "What will it affect When all is done?" Thinks Major Tom. Back at ground control, There is a problem. "Go to rockets full." Not responding. "Hello Major Tom. Are you receiving? Turn the thrusters on. We're standing by." There's no reply. 4, 3, 2, 1 Earth below us Drifting, falling. Floating weightless Calling, calling home... Across the stratosphere, A final message: "Give my wife my love." Then nothing more. Far beneath the ship, The world is mourning. They don't realize He's alive. No one understands, But Major Tom sees. "Now the light commands This is my home, I'm coming home." Earth below us Drifting, falling. Floating weightless Coming home... Earth below us Drifting, falling. Floating weightless Coming, coming Home... Home..... Hugs, R A C A

Day 27 / 7 at TCH

I did not realize we have been here now for one week already until I typed the 7 in the headline. Time sure flies when you are having fun ... right?

There is something I want to add to my post today that I read on Hope's families Care Page and I hope they don't mind that I copied it:

Thank God for Kids

If it weren't for kids have you ever thought
There wouldn't be no Santa Clause
Look what the stork just brought
Thank God for Kids

We'd all live in a quiet house
Without Big Bird or a Mickey Mouse
And Kool-aid on the couch
Thank God for Kids

Thank God for kids there's magic for a while
A special kind of sunshine in a smile
Do you ever stop to think? or wonder why?
The nearest thing to Heaven is a child

Daddy how does this thing fly?
A hundred other where's and why's
You really don't know but we try
Thank God for Kids

When you look down in those trustin eyes
That look to you, you realize
Its love that you can't buy
Thank God for Kids

Thank God for there's magic for a while
A special kind of sunshine in a smile
Do you ever stop to think? or wonder why?
The nearest thing to Heaven is a child

When you get down on your knees tonight
To thank the Lord for his guiding light
And pray they turn out right
Thank God for Kids

Thank God for Kids

Truly, I do wonder what kind of people we would have turned out to be if it wasn't for our kids. They have brought magic back into our life, shown us kindness, do not worry about tomorrow and always have hope.

Today was a busy day again for Connor. He had once again OT, PT and Speech. He got to wear a little helmet for his speech assessment that measured how much air came through his nose when he talks and I am not using the medical term now because I forgot but the flap that is suppose to close when you sound out words other then M or N is not closing for him.

He also went for a group breakfast today with 4 other kids his age that are on this floor which is part of his therapy and seemed to enjoy.

We did have a bit of a challenge with Connor this morning due to him being in a miserable mood BUT we also knew it was not his fault. Unfortunately he got his dose of Solumedrol at 4 PM yesterday and it kept him up until 10:30 PM and then he was woken up for meds and his group breakfast at 7 AM. So he was tired and grouchy...., plus he had to throw up about 3 times :(

Sam and RW stayed until noon which was wonderful because at 10 AM I went to drive Ron and Alexander to the Airport so they could be on their way to Seattle and Anchorage.

The big news for today are that Connor is scheduled to have his port put in his chest tomorrow morning at 10:30 AM. I was told I can watch the procedure and all I have to do to go into the operating room is wear a bunny suit :)

Also tomorrow at noon will be a conference with Dr. Sope and all the different Therapists to give us an up-date as to were Connor is right now and if they see progress already. I am of course hoping to hear if there might be a tentative date for how long they all think Connor needs to stay in the Hospital.

We also got a visit from the Hospital Social Worker to see if Connor or us need any help at all. Which we feel after 4 weeks of living in hospitals we are finally getting the hang of it...

Connor also is back in the game for coloring pictures but to my big surprise Star Wars was not on his wish list. Instead he colored The Cat in The Hat, Thing 1 and Thing 2, and pictures of American Airlines.

We finished today with a Pizza social that one of the Harley Davidson Groups here in Denver sponsored. Which reminds me we also had a visit from the Nutritionist and they are not to impressed with Connor's lack of appetite and eating. It is important for him to get protein in him for his muscles but everything send his way in the form of drinks and shakes he refuses to drink.

So and then I will admit that those three days at home were very precious to me in a way that I did get some wonderful time alone with Alexander plus I have to say I would push my mind to think that Connor was on an outing with Ron and that life was back to what it was before this all hit us in December. The dream of it all was so beautiful that it was almost painful to face reality again and enter through those hospital doors this morning ...

I know my mind knows it could all be so much worse but still at times I can not help to think back of how carefree our life was not even 3 months ago ...

Also, I know I mentioned Hope on my blog before. She is still here with her family in Chicago and I want you all to please think of her and them. I know we do everyday but then we are the lucky ones because we got to meet them all ..

Love,

R A C A

Day 26 / 6 at TCH and in Lake George

What a busy day for all of us today!

Today Connor had a very full day with three therapy sessions schedules, PT, OT and Speech. I am forgetting if I mentioned his speech but it deteriorated about one week into our stay in Chicago and we are all guessing it is due to his muscles in his mouth and throat being affected as well.

Ron told me he seemed to be doing well for two of his sessions but was tired for the third. The Therapist are now discussing if the schedule is to much for him for now. It is crucial he does get therapy but there is only so much his body can handle right now.. It was also decided to get him on a better schedule for his pain meds and instead of Tylenol they tried giving him Motrin today and this seemed to help a bit.

His blood test levels also came back from the blood work they did this morning and two of his levels are still high and actually higher then they were in Chicago. Dr. Soep has been in communications with Dr. Pachman and as of now we moved his infusions of Solumedrol from two pulses a week to three (Monday, Wednesday and Friday).

Connor and Ron also got a visit from the surgical team about the possibility to get a Port put into Connor's chest in the near future. Connor who likes his PICC Line better then the IV was according to Ron very excited because he also does not like the PICC Line to much since it was a bother to him when he got a shower last night. So is request was to get a Banana flavored mask again when he is going into surgery ... so simple when you are a kid!

And to bring some smiles and attention to Connor he has been holding court to several visitors since arriving in our home State. He had Lady Di and King Richard there on Saturday, then Richard came back with his son Matt who our boys adore to no end, and today the big highlight was Auntie Sam and Uncle Ron. They came all the way from Colorado City, to spend two days in Denver to be with Connor.

I look forward to meeting up with them in the morning :)

Which brings us to Alexander and my day. It was super busy but also fun to have this time together. Alexander has been an Angel for most of the time and something I had worried about was his lack of appetite since all this started has been resolved for at least today. He was eating quiet a bit and was just asking me about dinner :)

The two of us ran some errands this morning and one important one was a haircut for sweet Alexander. He is back to looking like my boys used to look like and the true adventure will start when I try to cut Connor's hair in the hospital tomorrow. I talked to the stylist who did Alexanders hair and she showed me what I need to do and even offered to come to the hospital until she heard he was in Denver and not in the Springs. So now I have a haircutting set and I am ready to go - ha ha

Miss Ann came over today as well to get the run through about taking care of our dogs for the next 4 days which is a big relief on my part. I told her if things go wrong I am 'only' 2 1/2 hours of driving time from home.

So and the big one for me today was calling both our insurance companies, spending time with Verizon since my little Droid was acting up today and this is not something I need right now.

We used to have Blue Cross and Shields for 2009 as our Heath care provider, and we switched back to United Health care for 2010. I am only mentioning this so you understand why I mentioned two insurance companies. Blue Cross is handling all the claims we had from Decembers Doctor visits and testing, while United now is hit by our claims from January on. I have to say it was a good experience talking to both and they were very helpful and informative. Both Representatives I talked to were kind and compassionate which was nice. Now I am not sure how it will all play out in the end but that is for another day :)

So and now Alexander and I are packed up for our drive to Denver at 7:30 AM. Ron & Alexander will take a Noon flight to Seattle and then on to Anchorage and I will take over my post on Connor's side.

Hope you all had a nice weekend! We for one had a productive one.

Hugs,

R A C A

Day 25 - Day 5 at TCH

Twenty-five days and my first night at home. I am glad there was no hidden camera in my bedroom last night because it would have made for quiet a laugh seeing me jump out of bed several times thinking I was in the hospital and looking for Connor. I was so disoriented it was rather silly but when I did sleep it was heavenly (we actually do have a heavenly bed that we ordered a couple of years ago after spending quiet some time in the Westin Hotel Chain :)

I talked to Ron several times today and everything seemed to be going well for both of them. Connor had OT and PT again and we might have figured out how to have him participate at Therapy a bit better. When Ron called me the second time this morning he said that Connor had gone to PT, so I asked him how come he is able to call me then. Turns out my lovely husband figured they just come to pick him up and that he did not have to be with Connor. I have always gone and worked with the Therapist so was a bit worried that he send him by himself. Well, it turns out the the Therapist said the session had gone really well. So now I am wondering if by my being right there I am causing Connor to rely to much on me since we have been doing everything for him until now.... So you see how great a well balanced marriage works... I would have been clued to Connor's side while my husband felt he could use some Independence. Way to go for Ron's insight!

And here are some really good news. The Stool Sample Connor gave yesterday came back negative... so no blood there :)

Alexander and I are relaxing at home today. Earlier we were watching some Olympics and I caught up in our office a bit. It feels good to get a bit organized again.

We also got a visit from my friend Caroline who came with her Dad who offered to plow our drive-way. For those of you that know our home you also know that this is not an easy task since not only is our driveway long but it is steep as well. This was a bit of a worry of mine because we are expecting a propane gas delivery tomorrow and I was worried their truck would not make it up the hill.

So, and then this wonderful man even fixed up the Dog Run because there was a huge sheet of ice on top of it weighing it down. I think winter really arrived at our home while we were gone....

So, lovely Caroline has been my an Angel to come and give me company today and to sit, listen, having wonderful ideas and advice. She even sat down and played Star Wars Lego wii with Alexander ... bless her heart!

There were three phone calls that were also wonderful and calming. I got to talk to two of my sisters who each have their strength in what advice to give, and then I got to talk to a friend who has been close to my heart since we both started working for AA in 1996. I always teased her that of us three room-mates she was the brain and organized one.. so I should have known that it would be her that talked to me about our health care insurance and what I need to do in regards to calling United Healthcare in the morning. What a Network we have!

Connor and Ron seem to be doing well at the hospital all day since each time we talk they are watching a movie or they they are eating :) Connor did get a shower today but unfortunately did not cooperate for a hair wash so I am going to get inventive on how to go about to clean and cut his hair when my turn comes on Tuesday.

Another really up-lifting news is that by tomorrow my parents should have booked their flight here to Colorado and if all goes well they should arrive by March 3 or 5. This will be true heaven for Alexander since we strongly believe what he craves the most right now is a schedule and some stability which my Parents can provide, plus of course some well earned attention.

So I am off to spend more time with Alexander and one more night in my 'Heavenly' Bed. Oh, I do have to mention the Shower this morning was divine :):):)

Hugs,

R A C A

Day 24 - Day 4 at TCH & at Home - Survival Priority List

I am not sure if I ever woke up to more e-mails and messages and phone calls in my life after my post yesterday.... I am not sure why I keep being surprised when I truly do know we are surrounded by Angels and the biggest extended family anyone can only dream of!

Today was a mixed day for Connor. He had Physical Therapy (PT) and Occupational Therapy (OT) this morning. Both lasted for just about 20 minutes before he got to tired. OT was first and the Therapist tried to see if he could help getting himself dressed. He really made a good effort and we did get some PJ's on him. He then got to go to the Gym and play some Basket Ball which was him sitting on a table leaning on me while the table got raised to the same height as the basket and he then got to try and throw balls in it. He threw three balls and then got tired so we cut the session short. The came PT about 2 hours later and here we tried to have him sit on the table kicking a beach ball.He did not like this but got a little excited when they put up a swing since he used to love those. This did not go well as he is still unable to sit in a 90' Angle so he started crying. He was ready to quit when the Therapist asked him if he liked to play with anything else and to look in the closet for a toy. Well he discovert Potato Heads and wanted to play with them. This lasted for a good 10 min of him trying to reach for pieces and putting them on. It was so strange to watch him struggle with a toy that he had mastered at 2 years or less....

We also saw Dr. Soep and there are a few news in regards to Connor's Blood Work. A few levels have been even more elevated then they used to be and they need to be addressed in regards to his treatment. We might go to 3 Pulses of Solumedrol or we might increase the Methotrexate. Also there is a concern about him possibly loosing blood. Today he had to give a stool sample to look for blood in his stool. It did look very dark and blackish so we have to wait and see on that one.

Connor had two highlights today. For one he got a visit from Lady Di and King Richard (Rich & Dianne who are lovely friends of ours). Connor's face just lit up and he could not wait to show off how he can move his wheel chair. However his energy is so low that after 30 min he was close to getting ready for bed.

The second big event and one that had him so excited and waiting in the Lobby was him getting to see Ron, his Papa :) Ron took over the shift today and will stay with Connor until Tuesday morning when I take over again so Ron and Alexander can head to Alaska to meet our precious Grand Daughter Harlow Olivia, and of course the greatest daughter there is Niki :)

I did have to fight back tears again today but they were not of me being frustrated or upset but because when I was leaving there were two events that broke my heart. One was me packing up and Connor trying to climb out of bed and Ron picking him up so he could sit in his lab. Ron looked at me and said 'do you know how long it has been since we were able to have him in our lab without him being in pain?', the other was in the lobby when I was saying goodbye and I leaned down to kiss his nose, cheeks and mouth when all of a sudden I felt two little arms reaching out to hug me ... I am not sure if you realize how huge this one was because Connor has been unable to Hug anyone for a long long time. Lifting his arms is painful and trying to use his muscles at all has been so difficult.

And now I am 'Home' and the homecoming was so so lovely if not a bit sad. I came home to house that was warm, clean (even our black TV has no dust on it :)and I have food, treats everywhere and new toys waiting for our boys. I do have to mention the food..... I think I could be snowed in for 2 weeks and there would still be something to eat. This truly is hard to describe but the refrigerator is packed, there are treats and fruit everywhere. Not sure if you all realize how heavenly it is to look at healthy food and FRESH food?

I will add that I was VERY selfish tonight ... Alexander was actually hoping for a sleepover at his friends Alexander's house, with Miss Shelly and Miss Clare. So when I picked him up he was not truly happy but I kept insisting because I did not just want to spend time with our youngest but needed to! Being with Alexander, especially with all the buildup energy he has right now gives me back the memory, the noise and the chaos that used to be so normal for us. I am dreaming of the day when we have both of our boys running through this house again.

I will add one wisdom that was send to me in an e-mail today from a family we have come to care about very, very much and who have gone through their own medical nightmare:

They call it their (and now our) Survival Recipe:

priority 1- conners health,

2-family,

3-a roof over your head,

4-utilities & groceries,

& last - medical bills.

One day at a time. Thinking too far ahead into the future can be overwhelming

A little shout out to The Gallup Family, The Simpson Family, The Tossell Family, Kendra, The Herndon Family & The Miller Family, especially Kim's Mom before I completely sign off:

Thank you for your most generous offer to come here and look after our home and family or to take in our dogs for the duration of Connors stay. All of you have jumped in and send the offer to come here. One of you facing a move and trying to sell their house, one giving up her Spring Break when you know how important that can be when you are a College Student :), one of you offering to move their work place and family to help us and then one of you who is yourself dealing with a medical upset and nightmare in your family. You teach me how big a heart really can be ........ it is almost ironically that it looks like we will be okay by having a Pet and House Sitter but please realize that this showed in a big way

I am now signing off to go and have some playtime with my youngest son :) I did have a little surprise for him that I had gotten before we even left for Chicago not knowing if the boys were able to handle it when I bought it originally.

It is not a PS 2 or 3 (can't afford those now - haha) BUT since we already own a wii I had bought and no surprise there: STAR WARS LEGO wii :) May The Force be With You!

Day 23 - 3 at TCH

Today is the first day it feels like an effort to write on the blog but I want to because I know it will feel good to keep documenting everything that is going on....

Today Connor got his dose of Solumedrol & Methotrexate. He woke up this morning feeling pain everywhere but after we thought about it we figured it was him just feeling sore after the PT he had yesterday plus his new favorite past time moving around in his wheel chair. So even if he just pushes a little it is still more exercises then he had in a long time.

He did have one more 30 min session this morning and had fun. This is what I love about this Hospital, they make it really fun for the kids in rehab and they do not push but watch carefully and listen when Connor says he is tired.

Today was difficult for me and I figured out why. In Chicago we lived in kind of a bubble because all we focused on was Connor getting the treatment he needed and we were glad that the four of us were able to stay together.

Coming back to Colorado was very emotional but also threw us back into reality really fast.

For one, we are now separated in teams of two so one of us can stay with Connor and the other takes care of Alexander and our responsibilities at home.

Some of you will have read my post on FB... and here is why I came to this point...

We are one of the 'lucky' ones to have insurance. However since it is 80/20 it might be easy to figure out what 20% can mean when you look at the Doctor visits, tests, and treatments that Connor has been going through, plus him being admitted to a Hospital going on four weeks now.

It is ironical that one of my passions has been the Health Care System or lack of it and how it impacts Middle Class and now we are actually living the nightmare.

We are NOT complaining now but we are faced with some tough decisions and we will have to make some big adjustments to our lifestyle very soon. We are faced with a lot of bills and more to come. This will not stop us of our mission to get Connor the care he deserves and to put the focus where it needs to be... on the four of us to get through this.

For one Ron has to go back to flying which leaves us trying to take care of one son being in Rehabilitation 106 miles away from our other son at home.

My parents will try to come here as soon as they can manage but they have medical issues themselves so have to take care of their Doctor visits before coming to the US.

One of our worries right now have been our lovely and precious dogs, Tasha, Apple and Hexe. For one we will not be home on a constant basis and we can not afford to board them at this point. We do not want to loose them so have to find a solution until Connor gets released and can get therapy as an outpatient. I hope you all realize we are not heartless debating this right now but that in fact they are family and we need to come to a solution that will be kind to them as well. My brain is truly not fully functioning right now because I know there is a way to handle this and this is why I am relying on our friends to throw ideas our way.

We might get lucky and on Tuesday get a tentative date for how long Connor needs to be admitted. They really stressed the word 'tentative' because it all depends how PT and OT feel about Connor's progress over the next few weeks I guess.

We did have a visit from Dr. Soep and she talked to us about Connor's blood levels. She has been wonderful in every way and told us that she communicates with Dr. Curran and Dr. Pachman. She did get an e-mail from both of them and there might be an adjustment to Connor's medications next week since some levels are still to high and are not coming down as they had hoped so depending what Mondays Levels look like his doses will be increased.

Also somewhat good news is that our Insurance agreed to Connor's move to the 6th floors Rehabilitation Center. So we moved once again and Connor was upset at first but is now hoping they might offer Orange Cream Popsicles on that floor which is a new passion of his. Our new room is 621 and feel free to visit just remember no kids under 12 are allowed to the rooms.

Now since time has passed from when I first started to write this message this morning I have to tell you how you all have showed me once again what amazing friends we have and when I seem overwhelmed you start trying to problem solve, send ideas and offer help. THANK YOU, DANKESCHOEN, GRACIA'S :):):)

Also, there are as always a lot of people to thank today and I want to Highlight the Gallup Family for driving all the way to our house to pick up Alexander, giving him a much needed outlet and play-date, feeding him and then driving him home again. I know my husband was grateful and I can only imagine what it meant for Alexander!!!

And I have not been home yet but from what I gather the Welcome my husband and son had must have been amazing. I heard there was food in the refrigerator, Dinners, Flowers, Wine, cookies and treats and a clean and dust free house after it sat there for over 3 weeks. Maybe I forgot something but then I have not been there yet... however this was all Thanks to the Gallup Family, Simpson Family, Shelly, Clare and Ann...... True Angels!!!!

So you see I promised when I started this blog that I will always be raw and honest with what is on my mind. You will get to hear the good and the bad and the ugly but this is what this journey is to us ... ups and downs but never ever will we accept defeat :)

Hugs,

R A C A