Day 12 at Home ... Shifting Focus

The day after Connor gets his Solumedrol infusions are always the tricky ones when it comes to his moods. We might start out our day well but then his mood-swings can rise up at any moment without a warning. Today however was almost calm other then him throwing a fit when Miss Shelly was here and he was not getting the full attention he so loves now. Luckily it was not turned towards Miss Shelly but he was a bit of a brat towards Alexander, who seems to be any easy target for Connor.

We started with school time again after breakfast, and here is where I have to shift focus for now and I am realizing 'once again' how much attention Connor has gotten compared to Alexander. It does not matter if we play games that require attention and concentration or if we work on reading and memorizing. Connor is miles ahead at this point compared to Alexander. Before JDM struck and you would have asked me, I would have told you they are close to being the same in regards to how well they are learning with a small advantage however for Alexander.

Now that we are home we have tried our hardest to focus on Alexander more and the challenge he seem to be facing is in him being unable to focus or even sit still for more then 10 seconds.

When we play a memory game for example Connor will beat all of us hands down (and trust me when I tell you I gave up a long time ago to let them win :)

Alexander will start the game and pick up the same card over and over not realizing he has looked at this particular card already four times. He is constantly moving and talking and I am now trying to figure out how to bring some calmness back into him.

We did get a call from Javier today and he said he will send us some ideas on how to work with both of our boys.

That's the part of any disease I guess. It will attack everyone in the family and the impact will be felt beyond the medication that is put into the 'one' patient.

We also got a call from Dr. Soep today and I love talking to her! She always knows what to say to make us feel better and how to calm our nerves when I worry about something. We truly count our blessing all the time to have been this lucky to get such wonderful caring doctors for Connor!!!

I am still hoping to get busy on Connor's Cookbook ideas that he came up with while in Chicago. When he was just able to eat soft or purred food we made up a list on items that he seemed to like and those he did not. Granted every child will have a different taste but maybe we can come up with some examples of meals that will be tasty for other children faced with it.

Now looking back on the last four months (can you believe it has been that long since his first real symptoms?) we were mainly set on survival mode, and finally I feel some energy coming back to me to put 'my' focus on the area where it needs to be as well ... Finding a Cure for JDM. What we have done so far was damage control which would not have been necessary if there was a cure.

Every time I log into the CureJM.org message board I am hoping to not see a post from a Mom, Dad, Grandma or Grandpa that asks for help because their child was just diagnosed or is showing symptoms that has them believe it is JDM. CureJM was a true heaven send when we went on this journey and they have been more help then I can ever express.

My dream is that JDM will be a focus when it comes to research as is cancer, autism etc etc. We have some of the brightest and smartest doctors on our side and what is needed it national attention and money for research just like other groups are getting. When I watch how many millions are raised for cancer research for example then my wish is for some six figures to reach our reasearch as well :). Granted not as many kids are dying by the numbers from JDM as there are with cancer. As I said before I am not trying to take away from this but have us get the same credit. No matter what a child suffers from or dies from it should matter the same. JDM can be fatal and has been and I feel that this does not get through sometimes.

So please send some positive vibes my way that I will be able to make enough waves to get someones attention that might be able to make a bigger impact than me. I know we don't have the celebrity circle that other illnesses get but I believe we don't need it. We can do it as a combined 'force' (had to use this word because my boys love that word ... can you here them sing the Star Wars Theme Song in the background???- haha).

So bare with me if I sound like I am repeating myself. There is so much to think about and then it seems like there is so little time in the day :)

Love,

R A C A

P.S. The picture posted today was us in Alaska last year visiting with Niki. It was a great time and also considering it was when we found out we would be Grand Parents! :)

OT, ST and PT, Blood Draw and Meds - Day 10 & 11 at Home

Considering I always love to write a whole novel on Sunday's, I am always short on words on Monday's. Must be because I am worn out from to much thinking on the weekend :)

Yesterday was a busy day in our home starting at 11 AM with OT for Connor, 11:30 AM ST and at 1 PM PT. OT and ST were just evaluations this time and PT went really well since Miss Mariann is truly a great match for Connor. She understands him very well and even has him show off for her :)

OT evaluation was a positive for Connor in one regard as the Therapist looked at all the LEGO and said this was great therapy for him :) of to building palaces again.

We also got a call from 'Make a Wish' and they were scheduling all the little Wish Recipients until the end of August. We asked if it was possible to have Connor put on hold until the Fall since all his wishes included traveling and he is not stable for that. To many infusions still a week and medications. We would love to be to a once a week for infusions so we could have a 6 day window :) Good thing Connor does not seem to mind .....

I am also realizing that Easter is bypassing me big time this year. We have not done any decorating and I am not sure if we will hide any eggs either. Neither of the boys has shown or told us they are missing anything so far and by them being shielded at home it does not seem to make a huge impacted. I am motivated as well again to go back to my baking, so this year the boys will get a Strawberry Cake with lots of fresh whip cream! I used to be so big on schedules and traditions and now it is hard to be motivated into either. The only schedule that matters right now is his Medications and the rest of the day I have to get school in and then it is a free for all. Oh, we do still eat and we did not give up on Coffee and Cake yet - ha ha.

Today, Connor received his Solumedrol Infusion again plus the additional blood work every Tuesday as well as a urine sample. Everything went smooth and still I felt uneasy. The infusion took a bit over one hour and Connor's nurse left after setting it all up. When the drip was done I flushed his line with Saline followed by Heparin and then pulled out his Butterfly Needle. It all went well and still the whole time I was thinking what if something goes wrong right now? We are truly 1 hour 10 mi away from Memorial and here we just came off from 51 days of 24/7 supervision to hardly none at all....

Now you all heard me talk about something being on my mind and then all of a sudden someone enters my life and gives me an answer to my questions. Same today! I took my parents and Alexander to COSTCO this afternoon while Ron stayed home with Connor and when we got home and I checked my e-mail there was a message from a Mom who has a 7 year old son with JDM. She said she read my blog and that she was faced with a very similar situation about the port and infusions. She mentioned it to Dr. Pachman's Staff they said 'NO'. When a child gets the infusions they are suppose to be monitored by a Nurse for Blood Pressure, Pulse and Temperature. Well this makes complete sense to me when I read it because this is what was done in the hospital. Connor had all his vitals checked every 15 minuted when he was hooked up. So THANK YOU SO MUCH for taking the time to write me an e-mail. Where would we be if it was not for those Mom and Dads we are meeting on this journey that have done this and been there - sadly so!

Hope You all had a good day today. Here in Colorado it was once again a beautiful sunny blue sky and temperatures in the 60's. It's time for all the melted snow to turn everything into a mud bath :)

Hugs,

R A C A

Connor's First Adventure on 'our Mountain' ... Day 9 at Home

Connor got to explore the outdoors today 'Thanks' to his Dad who is in this regard much more adventures then Mom.

Connor has been asking to go outside since the first snow fall earlier this week and now that Ron is home and we had a second big snow fall he finally got his wish.

The first Adventure came in the form of me trying to get him dressed. As you all know by now, Connor did gain quite a bit of weight and the snow suit fit okay but was not as roomy as we were used to. He then talked his Papa into going on the 4-Wheeler which did not go to well since he had to spread his legs to far and the bouncing hurt him as well. He was happy however since he got to try it.

Then my nerves were tested again when Ron and Connor headed for the play-ground. His favorite thing to do before he got sick was swinging on the swing set. He got to try both the swing and the slide (Ron sat him on the slide as high as possible and held him all the way down). He did not like the slide since it hurt his neck BUT he was still Happy!

Overall, if you were to ask Connor, the trip out-doors was a big success and my nerves were calmed again once he was back inside. I loved seeing him smiling the whole time he was outside but it was also squeezing my heart watching him struggle to walk and move. Everything that used to be so second nature to him and now just delivering 20 % is so much work and effort. He is by far a fighter and I am so proud of him!

Alexander, my Mom and I got to get out for a while when we went on an all exciting outing of shopping at Wall-Mart :) It is interesting how we now manage to just go to the store once a week, feeding six and doing really well :) I know it will change but for now it still seems like such a worry taking Connor out into public just because I want to control the germs and virus exposure as much as possible. So even when just the three of us went to Wall-Mart you would have smiled watching me wipe down the cart with antiseptic wipes so we wouldn't catch anything and bring it home to Connor.

What a change to go from being a Mom who never worried much about it and always thinking that each cold the boys caught would just strengthen their immune system to complete reverse and now trying to protect his complete weakened immune system ....

I have been thinking a lot about my upset with the Pikes Peak Regional Hospital, especially the ER and I am now wondering if I can help turn a bad experience into a good one. Since I had quiet a few feedback from others that had a bad experience there as well, it might be beneficial to request a meeting with a Representative and have all of us voice our concerns and see if it will bring a change. I am going to be truthful that I will not be going back there as I had to many problems in the past but I realize there are a lot of seniors living out here and they do not have the option as easily to make the drive to C-Springs or Denver as we have.

I am also thinking I must give an interesting picture to others, since the one reply I get a lot lately is that I need some rest or a day off (even my husband said this to me today), am I really looking this tired? hence the explanation why there are no pictures posted of me - ha ha.

I am finally after not even considering it once in the last three months, thinking that maybe I could do with a day off! I know it was meant well when I would get the speech in the past about how 'one needs to take care of themselves before they can help someone else', but quit frankly I found this phrase more then annoying and irritating. Who in their right mind would leave the side of their child when it is very sick (if they have the option of course), to go and spend a day getting pampered? I can just envision me getting a massage and being up in knots worrying about what is happening to Connor.

However, even I move on and now that he is home and Ron is still on a 'Family Leave' I am ready to venture out to an all girls lunch :) Another progress I am making is in the form of taking a nap each day. It is like going back in time when the boys were small and I would catch some rest when they took a nap. So as for now don't try calling us between 1 PM and 3 PM - ha ha

There are also some more serious consideration going on at our home and for the first time, Ron and I sat down a couple of days ago and talked about our future options. It seems we both have thought about the same path we might face but never mentioned it to each other until now that things are calming down.

For one there is the thought about moving so we could downsize and live more economically but what would initiate the thought of moving the most would be getting Connor closer to the access of medical treatments he needs.

All this talk is NOT written in stone and we are not making any decision right now! As a fact my husband today talked about building a Tee-pee for the boys in the forest behind the play ground. However, we did have a yummy dinner tonight that was made up of whole wheat crackers, Mediterranean Olives, Gouda Cheese and Roasted Pine Nuts Hummus, plus I enjoyed a glass of Liebfrau Milch White Wine and we are almost convinced now we should move to either the Tuscany, Italy or Greece. Not sure how their Heath Care System looks like just yet but maybe I have to do some serious research ... :)

Tonight I want to Thank Mr. & Mrs. Morgan once again for their most precious concern about Connor and most of all for always having such wonderful up lifting things to say about my blog. I am never sure who all reads it and how much sense all my writing makes until someone brings it up. I so love the outlet it brings me but I am also glad to hear that it means something to others that care about Connor.

Hope you all had a peaceful weekend.

Love,

R A C A

An uneventful but Happy Day ... Day 8 at Home

Today was a wonderful lazy and relaxing Saturday for all of us. Connor always has a hard time the day after his infusions, dealing with mood-swings that reach from being grouchy to being sad. He did experience each of those emotions but they never lasted for more that 10 minutes at a time.

We were able to have some school today focusing on reading which my two dumplings are not to excited about. They can sit and work on math for an extended time, but bring a book out and they try to hide. Lucky for me Connor really can't get away from me ... :)

Due to all the snow we got, Alexander, my Dad, our two German Shepherds Apple & Tasha and I got to go on a wonderful snow hike on 'our mountain'. It was so peaceful and relaxing to be out in the fresh air. We all felt like a nap afterwards other then Alexander of course who's energy level can match that of 3 kids combined.

Hope You all had a good Saturday as well. I have to tell all of you that followed my post about Henry , that the biggest highlight came today in the form of an e-mail from his Mom telling us that he is awake and doing well. H does have some heart damage but they was so much happiness coming through this e-mail that my heart felt lighter after reading it!

Hugs,

R A C A

Things are looking up :) Solumedrol & Methrotrexate

How much difference four days make ... I have to tell everyone of you that today's Nurse visit for Connor went really well. I would be lying if I said I wasn't nervous but I had some wonderful support on my side today in the form of Miss Jennie, who on her day off found a Baby Sitter and then came all the way from C-Springs to sit with me and Connor through both of his Solumedrol and Methrotrexate infusions.

The whole process was calm and organized. I got to do the change of medications for Connor while his nurse and Jennie watched me do it and once the Methrotrexate was hooked up our nurse left and I got to flush Connor's port with Saline followed by Heparin and then take the needle out of his port all by myself. I have to say it felt pretty good to do this and I am pretty proud of myself :)

The goal now will be to get to the point where I can do all of it, including accessing the port and just leave the blood work for the labs.

The rest of the day was peaceful and happily uneventful :) It started snowing in the afternoon and it snowed well through the night. So the work I did the other day spending three hours on our 4-Wheeler plowing snow is not visible anymore but luckily Ron is back home and the Back Hoe should be working :)

So 'Thank You' Jennie for being such a comfort today and lending your experience but most importantly for some wonderful 'girl' time.

We also got a precious call from Connor's favorite PT at TCH, Miss Kerrie Carrie. She wanted to know how Connor was doing and also offered her advice on dealing with JDM for his new PT if she would want it.

Another phone call we got was from Connor's Speech Therapist, who is on Spring Break vacation right now but will come on Monday at 11:30 AM for her first assessment. She choose the lunch hour so she can also observe Connor eating ...

Hope You all had a good day as well!

Sending thoughts to your 'family' in TX and hoping that a contract on their house was signed today!

Hugs,

R A C A

A New Day :) And down memory lane!

Well, some of you might have read my earlier post and I am happy to say that today was a really good day in our Home!

Both, Connor & Alexander, had a wonderful time playing together and we even got some school time in today. One of the many wonderful things about having my parents here is that it is easy getting some German Language skills back into the boys. Connor was feeling great most of the day and I knew when his mood was dropping that it was time for his Tylenol but the funniest part today was Connor reminding me when it was time for all his 'big' meds as he calls it.

So really we had a fun and relaxing day at home playing games and coloring. We did have one scheduled event today however and this was about meeting Connor's PT for the first time and her assessing Connor. My luck really turned when I knew she was kind and Connor right away felt comfortable with her. Gosh how much we needed this is hard to put into words :)

Another huge highlight for Connor was getting this sweet card and box from our ultimate Angel, Miss Olga Byrnes, the one that gave us the biggest gift ever five years ago to the date. Five years ago we were in Khabarovsk, Russia, on our second trip seeing our boys, but this time we were officially granted parenting rights by the Russian Courts. How can I put into words what this day meant for us? Connor and Alexander were our babies from the first time we laid eyes on them six month earlier and I never been happier since then. They are my life, they mean the world to me and if I ever did something right in my life then it was being rewarded with the privilege to be their Mom and to be a part of their life's. I know every parent must feel this way but there is no question that they are beautiful, smart, funny, handsome and just the most amazing boys I ever met. They did not have an easy start in life from the get go. Connor and Alexander were born between the 33rd and 34th week at 3.2 lbs each. They spend the first four months in the hospital before they were moved to the Baby Home #2 in Khabarovsk. How grateful we will always be to this Baby Home for giving them a most wonderful start in life. Maybe they did not have much money and resources but this Home was filled with Love and Caring people. It was a happy place to enter and all the children we met looked happy and well taken care of.

Connor and Alexander always had some medical handicaps from the get go. They both have tethered Spinal Cords, for which they had surgeries at the Children's Hospital in Dallas once we got home. We loved the Children's Hospital in Dallas and will always be grateful to Dr. Angela Price, the Neurosurgeon who performed the surgery first on Alexander and then almost a year later on Connor.

Both of our boys have just one kidney, which is not an issue if it works right but of course now has us worried at times knowing how many medications Connor gets and about the possible side effects.

Connor has been such a trooper through all of this because he is not new to challenges and this is why I got so heart broken when he was first diagnosed with JDM. I kept asking why him? How much do our boys have to deal with in their young life? I truly mean it from my heart that for both Connor and Alexander I would give my life in a heart beat if I knew it would secure and safe theirs. I wish at nights that it was me that had been diagnosed with JDM, but those are the cards we are dealt with and we will fight for them as we have from the first time we laid eyes on them.

I know I am not alone asking for the best for my boys. All of you parents are doing the same for your children. We are the only true Advocates they have and I will make myself heard in every instance when I know I can change a bad outcome and I will not be discouraged ever to ask for only the best and never accept anything but the best.....

Love to all of you!

R A C A

The Good, The Bad and the Ugly .....

So I am not sure today if I start out with everything good that has happened in the last two days or the bad.

I like to finish with the good but I think to keep myself calm today I will focus on the good first.

For the last three days both Connor and Alexander did really great playing together. It is still all about Star Wars, either the figurines, Lego or coloring. I am so happy to see that Connor has not lost his love for coloring and I have a new stack since we got home. He also took his first bath at home and he was able to sit in the tub without much pain. Connor even led me talk him into trying to do some stretches and riding his easy bike. I will add pictures and a video of both :) It is the only therapy he gets so far since we are home since we have not had a visit from either of his three therapists (OT, PT, ST). Strange to go from seven days a week of constant therapy to none. So we are doing our best to keep him moving :)

Then the other wonderful news are that once again I was spoiled by having some of the best friends and family! Not only are you all amazing in your support but last night when things fell apart as I will write later in my post, I had four Angels keeping it all together. First my Dad who took over taking care of the house and dogs, to my Mom who on short notice went with us to the hospital because Alexander wanted to go as well, to Caroline who showed up bearing food for us all to eat and Shelly who arrived to drive my Mom and Alexander back home after 3 hours at the ER.

So here is the back drop to what finished yesterday with me actually yelling at a nurse (yes me of all people and I am not proud of it but it sure felt right).

As you know we were released from TCH on Friday 3-19-2010. It was a most happy day and weekend for the six of us and everything went really well other then a few speed bumps with Connor trying to get out of taking his medication and of course for you that are on the JDM journey as well, known side effects of the steroids --- MOOD-SWINGS ---. All of this was fine, how can we not feel for the stress and pain our kids go through.

In order for us to be released, the hospital put in place In-Home-Care for Connor to get his Solumedrol infusions twice a week, Tuesdays and Fridays, Methrotrexate infusions once a week, Fridays, and one blood work up each Tuesday.

We were a bit anxious to see how it all played out but were comforted when we got a call from the Agency on Monday to tell us everything was in place for his first Nurse visit Tuesday at 9 AM (this is when Connor always got his infusions in the Hospital since it is a big dose of Steroids and the earlier the better). We also got a delivery of all his Medications and the syringes.

I was hoping to hear from all three therapist to schedule a date for an evaluation but heard nothing on Monday. Remember, Connor already had 3 days 'off' from therapy by then since in the hospital he went 7 days a week for all three until the last week when it went to 6 days a week for PT and OT, and 5 days a week for speech.

Tuesday, March 22, 2009, Connor had his first In-Home-Care visit for his Solumedrol infusion plus Blood Draw.

The visit did not go as well as I had hopped for a view reasons.

At 8 AM that morning I put the Lidocaine Cream on his chest area covering his Medi Port so the skin would be numb in time for the Blood Draw and Infusion one hour later. Connor's nurse showed up at 10:30 AM, so 1 1/2 hours later then we had been told. She came and looked at all the medications that had been delivered and then told me she will hook Connor up and then leave. I have never pulled out a port needle before so told her I am not sure what I need to do when the drip is done. I also asked her about the blood work and she said there was none.She pulled out the instruction sheet that were faxed to the In-Home-Care Agency to look at it again and there was the order for Blood Work. She said that most likely she had to do it on Friday as she was not prepared for it but was going to check in her car if she had some vials with her. She did find some so went and called someone about the kid of labs that were to be done. She also told me by then she would stay today to show me how to flush the port with Saline when the infusion is done and how to remove that butterfly needle. This is not something I mind at all and I was grateful to be able to at least do it once with a Nurse there to watch. I am not sure if this was something we should have been shown at TCH or not.....

She went and took some blood for Connor and I did not see her label them but I could be wrong in this regard. There were a few more issues where I felt this was not a prepared pediatric visit, for example there were no pediatric blood pressure cuffs to monitor his blood pressure during his Steroid infusions. I am not going into all of it because this got resolved later on.

Connor did have a low grade fever when the Nurse took his temperature so I followed up on it and when he still had a 99.6 F yesterday morning I called Dr. Sope's Office and left a message with her nurse. I did get a call back very fast from both of them actually and I described how Connor was feeling, his low grade temperature and our first In-Home-Experience. Dr. Soep called the Agency and had a long talk which seemed to be informative on both sides. For one it sounds the instruction given to the Agency might not have been to clear and for another this Agency does not have much experience working with Pediatrics and not the severity of Connor's care. I of course was not the perfect mix since I came from 51 days of perfect care from CMH and TCH and wanting the same at home ...

I got a call back from the Agency and we talked about all of us trying to make this work. I was happy with this at this point because I do feel there was blame all around and of course we give it one more try.

I received another call from Dr. Soep about Connor's Blood Levels and all seemed to look good. CK was at 44, we did not have the Von Willebrand factor back yet but no worries at this point.

Our In-Home-Care Nurse came back yesterday as well for a quick visit to flush Connor's port again as she said she did not feel comfortable the day before when she left and the blood flow back into the port felt a bit sluggish.

At 5:15 PM I get a call again from Dr. Soep and this time she had looked at the second report of Blood Work and was very concerned about the read out. It seemed his Electrolytes where all over the place. For one his Potassium Levels were extremely high and his Calcium Levels very low. She said if this read-out it correct then this is would qualify for panic mode and we need to get another blood draw and heart monitor going to see if he has heart rhythm issues. She said however he should be looking very sick (which he didn't) so the other explanation for the results would be that the blood was compromised. Especially for the Potassium it is time sensitive to get the blood to the lab fast to get a correct read out.

So we were at a point that we had to think those results were correct since it is always better to be safe then sorry and Dr. Soep asked if she should send the order to Pikes Peak Regional Hospital since it would be closer and most likely we will be heading home again or to Memorial Hospital in the Springs.

I so so so knew I made a mistake when I went with the easy road to go to Pikes Peak Hospital, thinking it is only a 20 min drive instead of one hour and how bad can it be going in for a blood draw.

We arrived at 6 PM and we got home at 9:30 PM. First when we got there they told us they had no order. Then they 'found' it and I told them why we were here to re-check his blood for Potassium and Calcium and right away I was told that the blood they checked yesterday was good and it was not 'compromised'. We went to the waiting room and waited for one hour in an empty room! I went in and said how much longer is the wait (considering there were nurses and doctors standing around - this was not your inner city bustling ER I promise you!!!). I was told they are not sure but they will get to us. They did come and get us 20 min later. Connor and I went into an examine room with a male nurse. By then Connor was hungry and worried about the 'poke' because due to the flush earlier at home Dr. Soep thought it would not be good to use the port this soon so he had to have blood drawn on his arm.

And then my trip to just have blood drawn turned into a questioning of all the medications Connor is on. This Nurse had the nerve to question me after I told him what Connor has 'Juvenille Dermatomyositis - (which of course he had no clue about). He kept pushing as to 'why is he on blood pressure lowering medication' 'why is he on Stomach Acid medication' etc etc. I truly lost it because I told him if he looked at the other medications he is taking --- High doses of Steroids? Methrotrexate/Chemo? Cyclosporin? etc etc. How can you not look at this list and as a nurse know the side-effects they are causing?????????

He said this is all well and fine but something else must be wrong with him to be on so much medications ... do you know now that this was the point I screamed at him? I told him who the nurse was and who had the real knowledge here because it was not him. We came here for a simple blood draw and not to have some nurse question Connor's disease or medication or try to diagnose my son who by the way is already treated by the best Doctors there are and they are NOT at Pikes Peak Regional Hospital!

Needless to say they assigned us a new nurse. She seemed nice but after another 30 min wait and a blood draw that splattered blood everywhere and over Connor's T-Shirt I was not happy by any standards. I did keep my mouth shut however and just held Connor who was crying non stop for 10 minutes.

The break came in form of Miss Caroline who was bearing food for us. By then it was 8 PM and of course I was worrying about Connor's medication schedule and not having any food. My Mom had her hands full entertaining Alexander in the Waiting Room. Miss Shelly also came to the hospital to take my Mom and Alexander home when finally we got the blood test results back...

No surprise there but his Potassium Levels and Calcium Levels were fine!

I was happy about the results and I pretty much guessed that this would be the outcome. So what is your thought now ... Do you think that maybe the blood taken on Tuesday was compromised?????? Well NOT according to the Hospital ... figures. We spend three hours at the ER, they claimed on the paper that we came in for a low grade fever? The only thing they did on Admission was take his temperature, NEVER did they take his Blood Pressure, OR measured his heart rate which if you have possible levels of Potassium this high would this not be the first thing you do when Admitted to the ER?????

I did hear this morning that the blood taken on Tuesday sat over night before it went into the lab!

Okay, I have to stop because as you see I am still so so mad. I hate feeling this way and this last week has been a huge disappointment when it came to Connor's care.

I know in the big picture this all might look minor but I so do not want to end back in the hospital, and everything that compromises the well being of our son's to me not acceptable. I expect the best and most of all I expect people to do their job right .....

So here is my venting for March 24, 2010. Lets see if it will be the last of it!

R A C A

Prayers needed for Henry & Co.

If you have been following our blog you know by now about all the families we fell in love with while we stayed in Chicago and in Denver.

Today I got an e-mail from Henry's Mom, Kathleen.

I will post some of what happened to Henry this last week and when I read it I can promise you my heart must have missed several beats and knowing Henry and how wonderful he is and to read what he went through was almost a physical pain. Just as with Hope, it is hard to put into words how those children take a piece of your heart, and on top of all the pain they go through, they are still the most beautiful spirits out there. Kindness and Hope is what they teach us Adults!

Here is part of the message:

...Writing to let you know that Henry had a setback last week. After his last (intense) chem treatment, he developed a very horrific infection. It attacked his lungs, heart and pretty much every other vital organ. He was placed in the ICU and worsened by the minute. He was placed on a ventilator to breathe.

We were told on Saturday that he might not pull through. He was immediately placed on the critical list and the crisis nursing team was assigned his care.

He has chosen to fight. The wonderful docs at CMH saved his life and made it easier for him to get back to us. Finally, this morning, they assured me that he was out of the woods and over the mountain!!! They are right now in the process of downing his meds and bringing him back to consciousness.

We as a family are not only luck, but much stronger!

I can't wait to talk to him -- it's been 5 days.

Bob just told me that the doctors will be taking Henry off off the ventilator tomorrow morning. We will have his sister on hand to welcome him back to our love!!!

We are in a very fortunate spot.

The only place scarier in the hospital than 4 west is the ICU. Pray for those families. Our prayers have already been answered......

So please once again I am asking all of you to pray for Henry this time, and for all those children in the ICU fighting for their life's.

Why is it that I always have to be put in my place in regards to what really matters. Here we are at home and I am complaining about the In Home Care Nurse we had today while people we love are suffering so much pain right now.

One thing this journey thought me ... I will never be the same person I was before December 2009 but thanks to all those Children, Hope, Henry, Grant and Emma I am the better person now because they thought me real strength, real Hope, how to be funny when in pain and most off all they showed me what real beauty is all about!

Hugs,

R A C A

Mirror Image? Day 4 at Home ...

Today I am posting some pictures for you so you can get a closer comparison as to how much Connor has changed in looks. For those of you that told me in the past you could not keep them apart I can tell you it would not take any effort now.

I would not have thought of this if it had not been for Connor himself asking me to. He looked in the mirror last night and for the first time since the steroids made some impact he really noticed, possibly because he sees Alexander next to him. He asked me 'Mami, why is my face not oval anymore', he said it looks round now. So today he asked me to take pictures of their bellies ...

Connor is doing wonderful at home and has been back to his favorite past time of coloring. We are making use of all the Star Wars Coloring Books Connor and Alexander received in the last month :)

We also had our delivery of Connor's Solumedrol and Methrotrexate this afternoon. He should have his first infusion here at home tomorrow morning at 9 AM. I have to say I was not prepared for the amount of drugs that would be delivered and I am grateful to Ron's Refrigerator he has in his workout room. Since it all needs to be refrigerated and it is a big amount it filled it all up!

It was another beautiful sunny day here in Lake George and we all got to enjoy some time outside on our back deck as well. Can I say again how precious it is to be back in a routine?

Hugs,

R A C A

Healthcare and Insurance :)

Oh how all my wonderful friends and family know by now that there is no end to my questionings and mind-sets :)

I was going to tell you all why I think we as a family are the lucky ones when it comes to getting care and financing Connor's medical needs.

The reason I keep mentioning and posting the cost factor is as followed:

I feel at times that there is a certain ignorance when it comes to realizing what the cost is if you yourself or a family member gets hit with a long term disease, a disease that has no cure or one that is terminal....

Ron and I are 'lucky' in the way that we are with United Health Care and have always selected in the past to have a PPO. This way we get to choose what doctors we want to use and where to take our child for treatments.

We are lucky first of all the we have insurance!

We are lucky that Ron has a job that pays well and has always kept us in a happy middle class lifestyle that we love!

We have 80/20, with a $150.00 deductible, $1000.00 out a pocked a year with a maximum for Connor of $5,000,000.00. This in itself is pretty darn good if you look at it and are not looking in treating a disease like cancer for example and I will explain a bit more about this ....

Of course as all dealings with insurance companies go you know very well that what is said so easily is not in fact written in stone. The amount of $1000,00 covers items that they think is needed for his treatment. Everything during our stay on the hospital was negotiable, especially when talking about the Therapy that is required or items he needs in assisting him like braces and wheelchair. It will be quiet a while before we see the real impact of costs facing us BUT this is where I don't want you to get us wrong.

We are NOT complaining about what cards were handed to us. We will always make sure, as would any parents, that our kids will get the best treatment and therapy there is. Do I think it is fair that this could change our lifestyle?

'not always' but everything is secondary and there is no choice in the matter when it is about your child and just as the saying goes ... all of us would give our life's to safe that of our child ..... so of course you do not question it if it means you having to give up the lifestyle you were used to! nerveless I feel I still have the right to complain about the cost - ha ha

We are also lucky once again that Ron has the option to work an extra year or two to help balance things out in the long run!

Now this brings me to the real reason as why I am going to post from now on what money we are spending.

For one can you please ask yourself if you have sufficient insurance coverage should this happen to you? Does our family and friends and neighbors?

We just paid $700,00 at Walgreen's for medication he might need to take long term. What we picked up might last for a month, even thought I look at some of the bottles and know they won't last this long. This bill did not include the Solumedrol and Methrotrexate he will get administered twice a week through Home-Care. It also does not include the IVIG he will receive once a month and we were told this one small bag that slowly drips into his body over a period of 8 hours cost just '$10,000.00'

We met a family on one of the support pages on the Internet that can not afford to buy a wheel chair for their son due to him outgrowing his original one. The insurance denied the claim and now they have to hold a fundraiser to raise the $700.00 for a new one. When you look through all the care pages and blogs through the Internet you see Fundraisers for Medical Funds for terminal ill children everywhere. How can this be that families who are 'not' poor have to ask for outside help? how can it be that Insurance Companies make money left and right? and why do we even have insurance companies when you are still stuck with paying so much out of pocket?

Another worry that I seem to come across the Internet is something Connor does not need to worry about just yet but what if your child comes of age and is taken of his parents insurance and now has a 'black mark' of a preexisting condition like cancer or JDM which does not have a cure. Do you realize that your child might be denied insurance?

The reason I mention middle class is if you are poor you get help even if it is not what you like per say and if you are rich you obviously don't worry about it.

So I know I am controversial now and PLEASE know I am always open for opinions from both sides. I do not have the answers and I don't know what the future holds but I do love to listen from those that might have more knowledge ... so here my busy brain asks you again:

Why is everyone so afraid of the new Health-care Reform? If you lived what we are living now and many other middle class families how can I worry right now that it will get worse? worse then what we face now?

worse then many families with a terminal disease in the family that are facing bankruptcy if they don't get outside help from Fundraisers?

Last time when I posted about my believes you all have been great in giving feedback through my e-mail, Facebook and here. I truly cherish any advice!

Time for my brain to take a break and off to play with my two 'little' favorite men :)

Hugs,

R A C A

Day 2 and 3 at Home in LG ... It's all about Star Wars :)

We are on day 3 at home, and maybe it is habit but when I skipped writing an update yesterday it felt kind of strange...

I was thinking that there would not be to much reason to write since we are home now and who would want to read about our everyday life anyway? Well, I was informed that for those who I started the blog for as in family and friends, plus of course ourselves since I did start this as a kind of diary to keep track of Connor's JDM and how it impacted us) ... it seems the blog still matters. Not to a big audience but for those that like to keep reading about Connor and us and to me in the form of writing since I do find it therapeutic :)

We are all in a wonderful state of mind right now because once again we were shown what really matters ... not all the distractions around us including Connor's JDM but us being together as a family and just enjoying being in each others company ...

Yesterday morning started out with Connor waking EARLY in time with his hospital habits. He asked right away where Alexander was and kept asking about every 1o minutes for the 1 1/2 hours that Alexander slept longer then him. One thing we found out since Connor was hospitalized is the opposite sleeping habits Connor and Alexander have. Alexander is just like his beautiful older sister who loves to stay up late but sleep in late :) Connor on the other hands goes to bed early and rises early. Ironically now would be the perfect timing to move them each in their own bedrooms BUT we can't due to their 'original planned' bedrooms being down stairs. Stairs as you know are not an option right now and we are not ready even if Alexander said he was to let him move to another floor of the house ...

I would lie if I said everything went smoothly yesterday. Connor went on battle mode when he decided that he does not need any medications now that he is home, well at least not the ones he categorizes as 'yucky'. He made his first move when he spit out the cyclosporine. I have to tell you this was not a good move on his part because I was not going to see him waste medications that for one he needs badly .. but also we just paid $700.00 for. So very nicely I told him where he will be in a few days if he does not take the lineup of 16 medications he needs to take during the next 12 hours, everyday, until the doctors change the line-up .... ... back to the hospital!!!! I think it put the fear in him because he was at his best for most of the day ...

I will write another post about why I keep putting the cost factor in when in fact this is not necessary or true compaint for us. We live what many families go through that are dealing with a disease that knows no cure as of now and we are actualy the lucky ones .. so why I mention it I will explain in the next blog up-date...

The rest of the day played out as followed. Connor and Alexander playing with their whole Star Wars Fleet and Figurines, including all the Star Wars Lego they could fit on the Living Room table. They played uninterrupted for at least 3 hours! The sound of them playing together, sitting next to each other without any arguing was so beautiful I just wanted to freeze the moment.

Connor did ask several times why he can't play and move like Alexander but Alexander, bless his heart, tried to stay stationary as much has he was able to with all the energy he has.

We then had lunch and then took a nap, everyone but Alexander who played quietly in his bedroom.

After nap time the boys finally got their wish of a Birthday Cake for me and were loudly singing 'Happy Birthday' and blowing out the candles for me :) I said before I had the best and most memorable Birthday this year already but I got my biggest wish when we all left the Hospital on Friday behind us.

After Coffee and Cake we played some games Connor learned during OT in the Hospital, Topple, Jenga & Ker-Plunk :) Those are so much fun and if you have small children and have not tried those games look them up. Connor has learned tremendous hand coordination's due to them.

And then to finish the night Connor and Alexander played Star Wars Wii until close to bed time. What made this so much fun was the fact that Connor knew how to get through the levels but was handicapped with the wii controls due to playing PlayStation and X-box in the hospital. Alexander knows the controls but not what moves to make. They made an amazing team and only on certain difficulty levels was I requested to help (high jumps) or Ron had to step in for specialty shooting challenges. We ended the night with Connor coloring none other then Star Wars pictures and Ron and I on the controls while Alexander rooted for mostly Ron - ha ha

So all in all the day was perfection for us and we could not have been happier!

Love,

R A C A

Day 51 / 31 at TCH and DAY 1 at HOME :)

I can promise you that sitting here right now, tonight with my whole family under one roof at Home is just the happiest feeling!

How come that something that used to be so normal is now something so precious to us?

Today started out as usual with Connor leaving for his Breakfast Club at 7:30 AM. We were extremely lucky to have our last day here at TCH with Chinonye as his nurse ... how much impact can a person have on how ones day go? Tremendously when you are in the care of someone that truly has a calling for this job. Connor still faced his two medications today of Solumedrol and the Methrotrexate. This meant we did not leave the hospital until 1 PM, however time flew by today with us saying 'Goodbye' to all the people that have touched us in the last three weeks. We also got to see the beautiful Stenzel Family again who were at TCH for another treatment of IVIG. It is such a comfort talking to them as they have been on this journey now for over two years already and have so much knowledge when it comes to this disease.

I am not sure if I mentioned it yesterday but the forecast for today in most of Colorado was a Winter Storm with the possibility of 10 inches of snow. We left the hospital around 1 PM and it was already snowing all morning steadily so when we got on Interstate 25 traffic was moving very slow. About 5 miles on 25 we went into a standstill for about 35 minutes, after this is we were able to drive on at a decent speed. I was glad that Ron was driving and Connor held out fairly well. He did complain a few times about it hurting sitting in the car seat but once we started a Star Wars Movie he calmed down.

The worst of the snow happened about six or seven miles away from our home and here in Lake George who usually does not get to much snow we had about five inches waiting for us. It looked beautiful and when we pulled up to the house a most beautiful banner greeted Connor. My Dad it seemed took his job very seriously for the outside banner while my Mom and Alexander got creative inside.

We all had some relaxing Coffee and Cake and then Connor wanted to walk all over the place even trying out his luck on the stairs (and those he needs still lots of help with).

We did have some challenges with the medications due to the list I have from the Hospital not matching what the pharmacy put on the label when it came to the dosage. We went with the smaller amount for tonight and will call tomorrow to clarify.

Connor and Alexander did wonderful playing together Star Wars Wii for about 30 min and even when they argued it sounded heavenly to us :) After a while Connor got tired and just wanted to sit on the sofa and cuddle and he started getting very fuzzy around dinner time. He complained about pain when he was sitting at the table and that he was hungry but could not eat due to his stomach hurting. We are hoping that this is all due to it being a very busy and stressful day today and that a good night sleep will calm him down....

How many times can a person say THANK YOU? not enough!!! Thank You all so much for traveling along through our journey from almost the beginning of the diagnosis to now when Connor got released from the Hospital after 51 days. What a trip it has been!

I wanted to write today to have a closure to our stay at the Hospital and I will still write on this blog as our journey is far from over but I most likely won't write every day....

Wishing all of you a wonderful weekend! I know we will have one staying home and trying to finding a new 'normal' again :)

Love,

R A C A

Day 50 / 30 at TCH .... our launch has started :)

Oh were to start today but with the very best news?

We are cleared to leave for home tomorrow! Blood work came back and I don't have exact numbers but CK levels are down even more and the Von Willebrand has gone back to about 350 from 455. Connor and I dropped of a big stack of prescriptions at the Walgreen's that is located right inside the hospital. This was good news for us since we use Walgreen's in WP so the refills will not be a problem :)

A few adjustments were made on his medications, for one we are going from 29.9 mg of Cyclosporine to 40 mg, and we are going from 400 units twice a day of Ergocalciferal to once a day 2000 units.

Therapy went very well and Connor was in great Spirits all around. Ron came in around eleven thirty today with some yummy KFC and I got another treat for dinner in the form of Chipotle thanks to my husband :) We will both stay here for the night and even thought everyone here is warning us about the Snow Storm that is suppose to strike Colorado starting at midnight we are not concerned. Who really thinks that snow would stand between us and finally getting home after 51 days? My husband will just show once again his driving skills from being raised no place other then Alaska.

Another highlight for Connor today was a visit from the 'Make a Wish Foundation' who came bearing gifts in the form of a Star Wars Book, Star Wars Flash Cards and a Flash Light. There even was a gift for Alexander, and after Connor shook the package he guessed it as Star Wars Lego. I guess we find out tomorrow if he was right :) The visit was wonderful and Connor was funny when for every question about what he liked Star Wars came in as an answer. It will be interesting to hear what wish will be granted for him :)

The news from Lake George today were a bit on the funny side for me but not so much for my parents. Tasha it seemed came home with a whole leg of a deer in her mouth. This would have shocked me six months ago but by now I have seen so many animal body parts thanks to our dogs that this would not have been to big a concern. However, since my Mom and Dad are still trying to figure out the girls, they were afraid to approach Tasha but also wanted to get rid of the bones. It seemed it took about one hour for them to finally chase Tasha one way so they could dispose of it. I do admit I am not a fan of our dogs finding the left overs from dead animals and for someone that grew up in a city this is still an adjustment...

My Dad, according to my Mom has also been very busy making a Welcome Home Banner for Connor that they want to hang up over the front door entrance. I am sure you will see the end results as a picture on here soon.

So Thank You all for your continuous support. This journey would have been a lonely one if not for all of you that have helped us and been there for us the whole 51 days. I am sure you all could do with a break from this blog :)

Love to all of You!

Hugs,

R A C A