Health Screening School Year 2010/11

The picture today is from my early morning workout buddy Connor. He showed up at the workout room dressed in the Sweater my Mom knitted for him because I was working out to German Music. I have such silly kids but then its expected with me as their Mom :) and then there is a picture of all three of my men resting last week.

Late Morning the boys and I went to the School for the boys Health Screening and I know Connor gets screenings all the time but I wanted a side by side assessment for both our boys. It was also wonderful seeing Mrs. Struble their Kindergarten Teacher who truly is the most wonderful person and is the kind of teacher kids can only dream of having. I told her we are thinking of bringing the boys back to school next year for 2 days a week and she thought I mend in January and said she looks so forward to having them back :) Well, I mend next school year but it is great to know she loves having them in the class room.

Now I know they will not be back in January at this point because I think it might take me all year to have them all caught up ...

So here are the Screening Results:

Connor passed all his tests from hearing and eyesight and he weight in at 47.4 lb.! at a height of 3'11.2". That gave him a BMI of 15 at the 38th Percentile.

Alexander passed his hearing and eyesight test BUT got a Refractive Error and he seems to have no Depth Perception at all. So I have to make an appointment with an eye doctor and see what this means. The Nurse told me that children with this have a harder time to learn ride bikes and do certain Sports but the irony is that he is the one that is riding his bike better then Connor.

His weight is 45.2 lb. at a height of 4'0.4" which gives him a BMI of 13.6 at the 3rd Percentile.

He is so tall and so skinny! but if you only saw him eat!

He almost eats more then anyone of us in this household!

We also got to visit Naoma twice today and after getting some more information form her Nurse I feel more at comfort of her going home. She will stay for one more night and then there will be someone that will stay the nights with them for a bit. Unfortunately Naoma was hoping that In-Home-Care would be available but the one Agency that works in this area (the same that Connor used) does not go farther then Lake George and they live another 20 minutes West of us.

There was one heartache today for the boys and I tried to protect them from it but could only do so much :)

Yesterday we bough a beautiful Scarecrow Couple and we put them up at the front entrance. This morning I let the dogs out and when I went out a while later to give them food I saw that the man was gone! All I saw was tiny pieces of straw in our front yard ...

Well, we started school and I admit I forgot about it and then for break time the boys wanted to go out and play. Right when they went outside I remembered and figured I would get to hear about it very soon. My hope was that the girls dragged most of the body into the woods so I could just tell them he left for a trip and most likely will come back someday (the day I would have time to go and buy a new one).

Alexander came into the house about 10 minutes later having tears in his eyes saying the Man was gone. Connor was right behind him and not looking very upset at all. So I said that he just went for a trip most likely but Connor burst my bubble by saying he was sure Apple and Tasha had eaten him.

I said we could not know this for sure and send them back out to play. Another 10 minutes later they walk into the house carrying the left over body of our Scarecrow Man. He did look in bad shape I admit and the boys looked so heartbroken and asked to have a funeral for him. Let's just say I stored him on top of the wood pile and said we wait for Papa to come home to have a proper funeral.

I hope your day went well and that you did not have any trials or if you did not any hard ones.

I am packing now for our Infusion Day tomorrow and of course we look forward to Ron's arrival in the morning! If I recall it right we have him home for 3 days!!!

Hugs,

R A C A

Therapies # ????

Today was Therapy Day again for Connor and my goodness does it get harder and harder to get up at 5:30 AM to make the first Therapy of OT at 8:15 AM.

Amazingly both my dumplings did very well this morning and both were even singing in the car. It helps I guess if they can look forward to some of their favorite junk food for breakfast. Sonics Drive Thru for French Toast Sticks with a Chocolate Milk Shake for Alexander and Connor gets the Ham, Egg and Cheese Burrito with a Banana and Strawberry Smoothie. How fast this became a tradition is pretty sad :)

I am wondering how much they will miss it when Connor does not need Therapy anymore!

Well, OT went fairly well until Connor cut of a piece of his thumb in a door lock. No idea how it happened but all I saw was a crying Connor with blood everywhere when the Therapist brought him back to the waiting room. Good thing that it was towards the end of his session and the next one was Speech which he loves. He took about 5 minutes to calm down and off he went again.

Speech went very well and it was wonderful to hear how he is making progress. The irony now is that Alexanders Speech seems almost worse then Connor's.

PT, now this is Connor's least favorite and also the hardest because his legs are still causing the most problems.

Now Connor did not wear his boots much last week and I kept telling him if he is not wearing them then they might start taping him and he does not want this at all. So I told her that Connor has not been very cooperative and she sat him down and gave him a good talking to as well so now he has to wear them 6 nights a week with Sunday night for a break and if he does not wear them then NO TV. Are we harsh or what? :)

After all three Therapies were done we headed to the Memorial Hospital to pick up Dr. Stephen Smith's Medical Records only that it turned out we got records but not the one I had asked for. I received a 1 inch big pile of papers about his Therapy progress but nothing about his initial assessments when he became sick or of the Muscle Biopsy. No, for that I found out when we got home I have to deal with Pueblo, CO. Now I called them and she said 'No Problem, just come in and sign a Release'. Well, we live about 2 hours from there :( So I asked if she can fax it instead. Now I hope this will work.

I also received a 100 page fax this afternoon from Dr. Youngs Office and it was all documentation from Connor's initial pain in December to now. I did sign release papers for that office on the 27th, yesterday, and I signed two, one for Alexander and one for Connor but they were meant to be from the beginning when we first moved to WP to now. So I am not sure why I just got parts of Connor.

I am just hoping this will not all turn out to be harder then I anticipated but it is still the beginning so I am holding on to some hope.

I faxed two release forms to TCH and CMH and hope to hear a responds from them as well.

Trust me when I tell you that the amount of paperwork coming our way will be huge. One year of documenting a child who was in the Hospital for almost 8 weeks and has been in constant care of Doctor Visits and Therapies now for 10 months....

Scary ....

We did get to see Naoma today and I am still as confused about her future treatments as I was when this first started. I was lucky to see the Surgeon,

Dr. Richard M. Malyszek, and I asked him what was going to happen next and he said that she might be able to go home tomorrow and she should be back to normal when it comes to her diet. All she needs to watch out for is not to lift anything over 20 lb.

Now this sounds great unless you look at Naoma and talk to her. She was still on no food or liquids and was still only nibbling on Ice Chips when we arrived and the boys actually took turns feeding them to her.

So I thought how do you send someone home who had parts of her intestines removed and has not had anything to eat since then? How do you know her bowls are working right?

Plus I have not seen her walk yet either and she looks very weak and frail to me.

So, out of the room I went again and to my luck once again there was still Dr. Malyszek and Dr. Young. I asked then about when she will be able to eat food and Dr. Young said she can start any time and that he will change the order now.

So we left shortly after and on our drive out of the hospital we say Sandy being driven into the hospital. When I talked to Sandy later I found out she was eating by the time he got to her room. So I am curious to see what happens tomorrow.

Now I did hear that there is a rumor going around that she will be moved from the Hospital to a Rehab Clinic which I think would be wonderful in certain ways. Hard in some ways on both of the people we so love but I think in the long term it would be really beneficial. Now this seems to be a rumor that is traveling the Church Congregation but not one that must have reached the Surgeon because he never mentioned that to me, but I guess that does not mean anything either. Maybe he thought I was not trust worthy to be told this, who knows :)

We also put up our Travel Trailer in Craigs List last night and it seems to get a good bit attention. I think if Ron was home it could be sold tomorrow but I have no idea how to show people how to open the awning and where the Title is. I found one Title that could be a match but the year is wrong on it and for Body Type it has TU and for Model it says UTL.....

So, today was very busy for us and I am very tired but saw that our DVR recorded the Season beginning of the Amazing Race and i would love to watch that :)

Wishing you all a good night!

Hugs,

R A C A

I am so hoping for an early night tonight because today was a busy day with us on being on the move for most of the day.

Connor and Alexander were really hurting because they decided last night to have a little slumber party in their room and had moved all their bedding on the floor while playing under the covers with their nightlights. Ron watched them at 11 PM with a Flashlight and they never noticed he was standing there until he asked them what they were doing. Can you tell the advantage of Home Schooling for me? There would have been pain all around if I had to wake them up early. As it was they came out of their bedroom at 8:30 AM.

I am not sure how I did it but I was up at 6:45 AM heading to the workout room to workout on the Elliptical and work with some weights. Now is there truly a person that says working out is fun??? I have been very dedicated to it so I can dream of wearing a two piece Bikini for our cruise, but fun does not enter my brain at all. The one thing that gets me through the workout is good music and being an 80's girl I occasionally put on some of the music from way back then. I was moving well with Prince and Kiss and right after was suppose to come Tina Turner when to my big surprise a song started up that at first I could not recognize by the starting melody but turned into the 'Itsy Bitsy Spider' kid song. ... NOT a good workout song at all :)

So and then I received two calls today from Dr. Rider's Office and one was for our flight itinerary and the second for our Accommodations. So it really is all set for us to head to Washington D.C. in November for the Twin Research Study.

My job now is to get all the medical Documentation together from every doctor the boys saw from one year prior to symptoms and Diagnosis. We only have about 1 1/2 months between the two which seems rare by JM standards.

My only wish for today would have been that the day had more hours. It went by so fast and I feel like I only got half the things I wanted accomplished.

The biggest highlight for us was being able to spend time again with Naoma and Sandy.....

The sad part of today was Ron leaving again. He was gone for four days, came home for one day, and left again today for another four days. It is a crazy schedule and we are holding onto the dream of him Retiring next year.

Hugs,

R A C A

Some Time with precious Friends ...

Yesterday the boys and I had the privilege to spend more time with Sandy and Naoma Morgan and the boys loved every minute of it.

We picked up Sandy at 10 AM to take him to the Hospital to see his lovely wife and we all got to visit for about 1 hour. Naoma was not doing so well yesterday and had quiet a bit of pain. Now I understand the first 2 days are always the most critical and painful after a surgery as intensive as this one but I thought it was beneficial for healing to be kept on constant pain medication?

I am also not to happy this time around how much effort it took us to get the attention for a Nurse, actually it was only a couple of Nurse Assistance I saw. So I am thinking if it was hard for me to get a hold of one of them (Naoma had already pressed the call button several times) how bad is it when she is by herself? I am just thinking we were there only for one hour and I was a bit annoyed.

The other concern I have was the fact that the surgery was on a Friday. I was told by Sandy that the surgeon who did the Colonoscopy wanted to take the tumor out as fast as possible after finding it midweek.

When we were in the hospital with Connor we knew that all our prime doctors were out of the Hospital until Monday unless we were lucky and one of our doctors was on call. Weekends for us were always the time to take the boys to the play area and tour the hospital because nothing was ever scheduled for us.

Now when is the most critical time after surgery? The first two days after. This is in Naoma's case Saturday and Sunday....

The second thought that went through my head was that here is no Oncology Ward that specializes in Cancer Treatments here at this Regional Hospital.

By now you know me. I question everything and everyone who treats someone in my family, and you also know I learned that nothing but the best is acceptable for my family when it comes to Medical care. Now Naoma did see the Doctor who performed her surgery today but when I asked her what he told her she said he talked about the surgery but could not recall all he said. How I wish I could have been there!!!

I am just thinking out loud here and did not make a judgment at all ... yet :)

However, most importantly of all I did call Sandy tonight to ask him if it was okay for me to write my thoughts in the blog and he said he trusted my judgment. So I am hoping I did not let our dear friends down and I did held back on a few more opinions out of respect for their privacy and also considering they did choose this hospital and Naoma is in their care and I do not want to compromise any care she gets there. Plus, I might be all wrong and everything will go smooth this week and the follow up care will be excellent ... I always have hope :)

As you see it is hard to hold back my 'Mother Bear' or 'Lioness' behavior if anything involves people I love and care for. So if you are one of them then be warned I will do the same and look out for you if you should be touched by any medical or family emergency :)

The reason I am writing all this now is due to me being worried all evening yesterday when I called Naoma and her telling me she was feeling very bad and was bleeding a bit and that the Nurse said they will keep an 'eye' on it.

Well, I have calmed down a bit for two reasons. I called Naoma earlier this morning and she sounded much better! She said she had a good night sleep and the only issue she had was her not liking one of the Nurses or Nurse Assistants :) Well, I could smile about this and also sympathise on this since we had the most wonderful nurses but also came across a few we did not 'click' with on our journey :)

As to the reminder of yesterday we ended our afternoon with quite an adventure :) While we were visiting in the hospital we found out that the care taker had accidentally locked both doors into the Morgans home when she left. So when we got back to the house we tried to find out how to break into it. The boys loved every minute of it and were dreaming of breaking into one of the windows so they could climb in and open up the doors. Well, all the windows were locked and before we had to break any windows we tried to locate some neighbors that were home so they could be of help. We drove to two houses with no luck and so the boys and I convinced Sandy to come home with us and spend at least the afternoon and dinner at our home while we could do some phone calls to find help or wait for Ron to come home so he could help us. Connor was getting very excited because he kept telling me over and over how happy he was that we could keep Mr. Morgan. Alexanders was voting to call the Fire Department so they could come and open the house up. Both doors that access the house are key less and lock with Iron Latch. Well, I admit I gave the Fire Department a call but since out here in the mountains they are all Volunteer I only got a recording to tell me to leave a message or call 911. I was definitely not calling 911! Especially when I was told from Sandy that his Oxygen Bottles were accessibly stored not inside the house.

So we loaded up again with Sandy and his Wheel Chair and headed for home while both my boys had big smiles on their faces. I admit I loved the idea, too, because it would bring me to exact the point I wanted when we found out about the Surgery :)

As it happened on our way out Sandy and Alexander saw the next door neighbors pull into their garage so we entered their drive way and I asked them to see if they could help.

I wish I remembered their last name but I can tell you they were both so wonderful and the husband followed us to the house and not 5 minutes later had the window open next to the front door and through this was able to open the door for us. I know Sandy was happy to be in his home and this whole affair was very tiring I am sure. The boys were a bit disappointed that for one no big Fire Truck came for the Rescue and we did not get to 'keep' Mr. Morgan..... :)

The boys and I were so happy when Ron came home a few hours later :) We were treated to Taco Bell and a nice relaxing evening at home.

This morning it was wonderful being home with my 'whole' family and we got some work done. Ron moved some of the Fire Wood to the front door and made more kindling and I was able to sit down for some school time with the boys who had to make a eight page Book about each day on a Farm. I admit I still got resistance on writing the sentences but with a couple of breaks we are getting it done :)

The afternoon finished nicely as well as I got to visit with Sandy for a bit bringing dinner, followed by taking a drive with Ron and the boys to look at a home that is for sale and that one of Ron's Coworkers wants to look at.

Hope you Sunday went well!

Love,

R A C A

Knowledge or Ignorance???

Yesterday evening my little mind who has not posted any deeper thoughts lately went in over drive again. Not sure why but maybe being back in a Hospital even if it was just to visit got me animated again.

Here is what I posted on FB last night:

Anke Smith To my JDM Friends ... I am just thinking but I am wondering how much easier it would be if JDM fell into the cancer category? If I told people Connor had cancer they would right away respect the disease and overall is it not like cancer? NO CURE! similar treatments ... Please feel free to give me your honest feedback if I am completely of track her

Now from reading this you can tell that there are times I get very frustrated of having to explain how serious JDM really is but it did not give the whole picture of how I feel.

We are grateful and lucky to have a wonderful supportive family and by far some of the best friends around. Almost everyone close to us and even some that are more of an Acquaintance have taken it serious from the start and have been supportive and helpful all along. I am also grateful to the Pepsi Refresh Project who opened peoples eyes and who gave a bigger voice to JDM.

I do get sad that JDM is still not as powerful a name as Cancer and Aids and therefor still does not get the Respect it should get plus receives the Government Funding I would like to to get. This is nothing new to you since I have brought this up in the past :)

No, none of this is really what motivates my little outbursts. The fact is that I am so envious at times of how little people and even medical personal knows about Autoimmune Diseases.

I am the first to admit that I was more ignorant then most before JDM entered our life in December 2009 and now I am asking myself how much I am doing good by pushing it to educate people?

Truly, yes we want people to feel sympathetic to the fact how many children are suffering and what havoc a disease can cause to a family structure and the financial stability, but really? What difference does it make for people to know this?

We get so many sad and upsetting news each day from the Newspapers and News Channels, does listening to more really lift any one's quality of life?

I am thinking that I might now be educated when it comes to JDM but I am still ignorant to lots of other sufferings that are going on in the world. If I tried to take it all in, the starving kids in Africa, the Political unrest and killings of people in wars all over the world ... where do we stop? Does my knowing this make any difference?

How about the fact I know about them all because I am a news junkie ... do I stand up to make a difference and try to make an impact? Truly, No .... because I am using all this energy to focus on 'my' world which is my family and winning the fight against JDM.

So here is it. Why do I feel the need to push people and make them aware of JDM? It did not touch their life's! (no exceptions for Medical Personal however! - haha) and maybe they just have one battle to fight on their own and I am the one that is ignorant of it? I can name you several names around me that are battling Breast Cancer and Lung Cancer and I know their main focus goes where it should be ... to fight it with all they can. Do they really, for example, need to hear about our battle?

I am telling you I wish the world was black and white at times but it is truly the gray shades that make it interesting.

Thank You Maddie, Erin, Monica, Lynn, Lucy and Vicki for responding. I love hearing the wisdom from my friends when my mind is taking me for a spin :)

Hugs,

R A C A

A busy but good day ....

I am so grateful to my friends who showed concern for Sandy and Naoma Morgan and I want to give you an up-date.

Naoma's Surgery was scheduled for 10 AM and she went back to surgery around 11:45 AM. The boys and I did not arrive at the Hospital until 1:30 PM and by then she was still in surgery. We were able to visit her in Recovery around 2:35 PM and she was moved to her room around 3 PM. The surgery we were told went well and the surgeon had to take parts of her large intestine and also some of her small intestine out. She is categorized at Stage III Colon Cancer and will stay in the Hospital for 5 to 7 days and then we should find out more about future treatments.

I admit I was not sure how the boys would react to see her in the hospital and I have to say they both did wonderful. They charmed the nurses in Recovery and they asked very good questions all around. They both new that Naoma has cancer so they wanted to know as much detail as possible. I admit they looked very happy to hear that it was not the same cancer then Hope had and of course I understood because they remember so well how sad they were when Hope lost her fight against cancer. I told Connor and Alexander that every cancer is different and that we will always hope for the best outcome.

I admit I did not enter the Pikes Peak Regional Hospital with the best feelings considering my past annoyances and just plain anger at this place BUT here I have to say the Nurses we met in Recovery and the ones on the floor were very nice, polite and easy to talk to. So I am still not going to use it for our care but I might soften my stance on how well the actual Hospital works after I can observe more in the next 7 days .... I know I am so critical, but this is a new side effect that came with JDM!

After we left the Hospital we headed home to prepare dinner for Sandy and we arrived at the Morgan's house around 4:45 PM. I admit that I was selfish because I love visiting with Sandy so I brought a movie for the boys to watch in order for me to have some quiet time to sit and visit :)

My question tonight is 'How do you try to help without being pushy and trying to take over someones life?' :) I admit if I was given the chance I would have packed up Sandy and moved him into our home. Of course intellectually I know they have taken care of each other for a long time BUT we the younger generation also see that some help would be beneficial especially when it comes to access to medical care.

Now here is where the Morgan's can be lucky! and I know that sooner or later Sandy will read this and talk to me about the following I am writing :)

If I was there daughter I would most likely move heaven and earth for them to sell their home and have them use that money to move into a beautiful Assisted Living Residence in Colorado Springs. Just the thought to have close medical attention would be my selling point plus of course other convenience's as in not having to drive long distances for shopping and entertainments.

However, I am not their daughter so they are safe in regards to me taking over their life. I will still be a voice in their ear and maybe the seed will plant?

Now my day did start early today at 7 AM. I actually cleaned all four bathrooms and the Kitchen Floor and Hallway. I was done at 10:30 AM, tired but glad I did it. Connor got his Methrotrexate Shot this morning as well and I have to video tape it for you all to see how easy this one procedure is in our home. He sits still for the injection and when it is over he does a belly dance singing 'Shake, Shake, Shake... Shake, Shake, Shake .... Shake that Belly, Shake that Belly!' :) Because I always tell him to wiggle his belly so the Chemo Drug can move around and not sit in one place. Silly but it works and makes him laugh.

Tomorrow is 'No Child Left Inside' Day here in Colorado and it is a lot of fun to get out and join the huge amount of activities that are planned for that day. I had planned to take the boys for a hike but my precious son's did not shrug a bit when I told them that we will instead take Mr. Morgan to the Hospital to see his wife. Connor even said how much he loved his Visitors even if I do not quiet recall it that way because I remember him getting upset when someone showed up while he was watching a movie or playing a game ... maybe this is his way of thinking it is payback time and now bother others in the hospital? :) So here I went from thinking how wonderful caring my boys are to second guessing it all - haha

Wishing all of you a wonderful weekend! Ours will be beautiful tomorrow afternoon when Ron gets home for one day before heading to Chile.

Hugs,

R A C A

Positive Thoughts and Prayers needed .....

Can you believe I am writing two nights in a row again?

Well, tonight is important because I just got of the phone with Mr. and Mrs. Morgan and Mrs. Morgan will go into surgery tomorrow morning for Colon Cancer.

Once again if you do follow my blog then you know the Morgan's and how much they mean to me and my family.

I admit I have not been very active in their life's lately and I could say that it was due to us being so busy but that would be a poor excuse because we should never be to busy for people we love.

If you take comfort in praying then please do so because they are both Angels and have been such a support to me through our Journey. I am not confident in my prayers because I think my track record and communications are still to shaky but I will do what I can to help from the ground here.

Today Connor also had Hippo Therapy again and it went really well. We were introduced to a new Pony named 'Posh' and he was as sweet as Blinkers but younger and much more spirited. Connor was laughing at how much Posh pranced around and how fast his trot was. Alexander in the mean time visited all the horses that were in the Stalls waiting for their turn and he gave out Hugs and Kisses all around.

We ended our day with a trip to the little Circus that came to Woodland Park. It was cute for the Adults and had mostly Acrobats in it but the boys thoroughly loved it and especially the Clown was a huge hit with Connor and Alexander. We did get the traditional Cotton Candy and this was the completion of a perfect day for our boys - according to them!

To finish up I want to let my friends from the warmer climates know that Pikes Peak showed itself this morning with a frosting of snow. Fall is here in full swing and it looks like Winter might be just around the corner. All I can say I love the weather right now but I will cherish our days in Miami and in the Bahamas soon! :)

Hugs,

R A C A

Daily Life

First Day of Autumn here in Lake George, CO and it made an entrance in style. It has been cool all day followed by rain and fog in the afternoon which prompted me to start my first Fire in the Fireplace since this Spring :)

The boys also did well in school today so I thought as a reward they could bake a cake from scratch and we labeled it for Science Class :). I have to say I am so much better now at letting go and not worry so much about a messy kitchen because the pay off is the best of all, two smiley and messy looking boys :)

Yesterday was Therapy again for Connor and once again he started with OT, followed by Speech which went very well and finishing with PT. By the time PT came around he was tired so he did not participate very well plus his feet measured once again at -7 and -8.

One of the things we have been watching again lately is Connor being tired and depressed and we figured it could be due to the long periods now between his Solumedrol Infusions or as simple as him not getting enough sleep again. If you recall on our last trip to Denver for the IVIG and Solumedrol Infusion, Dr. Soep told us to try and give him sleeping pills for about 5 days and see if his mood lifts. The problem we all agreed on was the fact that it could be sleep that is missing or if it was due to the Solumedrol then his mood will lift as well since he was just getting an infusion.

Yesterday I talked to Kim for a while and she reminded me and asked if Connor is still on his sleep aid and I said 'no' so as of last night I started it up again :) I am not sure how fast it can work but today was already a better day.

Now there is one more thought that could be the culprit and that is the fact that for the last week our boys have been taking turns of sleeping in each others bed. Alexander is such a wiggle worm that whoever shares a bed with him is guaranteed to not get enough sleep. I tell you that I make the boys take turns when they come in our bed because I can handle Alexander for one night of being kicked but not two in a row - haha

I am getting off the JDM track again but this whole incident about the boys laying in each others beds is very funny to us as a family. When we got the boys I could have sworn to you that they did not know each other and that they did not like each other. For one, every-time I put them in their crib with each other they screamed and kicked each other until I got one of the boys back out and layed him in the second crib :) They were always very jealous of each other and if I would sit on the floor and hold one of them then the other would come crawling at lightning speed and try to squeeze on my lap while pushing off their brother. I did not realize that my knees went bad and my back was always hurting until our doctor pointed out that I was always carrying both at the same time, one on each hip, just so they would not scream.

So you see it is almost breathtaking for Ron and I to see them at age six cuddling up to each other in their beds. However this is where the part of Connor not getting good sleep might kick in :)

Yesterday the boys also had their School Pictures taken and it was a real touching moment. Connor got a new haircut three days ago and he told me in no uncertain terms that he wants his hair longer on top and short on the sides and in the back. He then combs it to his side and looks pretty cute. Alexander went back to having his hair all short and in his words 'cool' :) They each picked out a background for their pictures which are not the same and they were wearing very different colored shirts. I can say that I am much more at peace with the different look Connor and Alexander have and I look forward to seeing the pictures. It was truly ironic when today I was told that our boys so look alike when I had not heard this in about seven months and when I absolutely don't see them as alike at all anymore.

I am also very thankful once again for the amazing friends that we have in our life. On Monday we had a full day of fun at our home with the Olson Family. The chemistry between us all is wonderful and their two kids and our boys play so well together. Jennie's husband Matt is going to deploy in October for 12 months, possible 15 months. He is an Officer in the Army and this will be his second tour to Iraq. I can not imagine what it will feel like for Jennie and her two small boys to not have him home for such a long time.

I am also grateful, as always, to my friend Kim for always knowing what to say and actually always call when I can really appreciate her advice.

I know at this time I could name so many of our friends who make an impact all the time and please know I am only pointing out Jennie and Kim right now because this just happened in the last three days.

One thing this JDM Journey has taught me is to never take friends for granted again and I can only hope to live up and stand up to being the same kind of friend.

I am off now to see what can whip up for Dinner since it seems that I don't plan as well when Ron is out of town. Ron is in Dallas for training and with any luck this will be his last one before he retires!!!!

We miss him and the three of us here at home can not wait for October when we should have lots of family time in Miami and then the Cruise. I am getting so excited and reading my way through all the information there is that I can probably board the ship blind and still find my way around :)

Hugs,

R A C A

Wondering .....

I am a bit at a loss tonight thinking about all the sad and bad news that have come our way those last couple of weeks.

I want to start my blog tonight asking you to think about three kids that are struggling hard right now due to JDM. There is a little boy named Mason who has JDM and who was just admitted to the ICU this evening due to an infection. Then there is a girl named Addyson who is another JDM child and who has pneumonia. Then last but not least there is a girl named Jaylin who is struggling as well. Please remember that our children's immune system is very compromised and that something like an infection or pneumonia can be devastating.....

Connor has been doing well. He got his Methrotrexate Shot yesterday and today he had his moments of mood swings which seem to be the norm the day after. We had a busy and tiring day today and during dinner he started crying about not feeling well and being sad. About 15 minutes later he was up again laughing and playing.

The other weight I am feeling tonight and where my heart is hurting is for two different set of friends of ours who are dealing with a lot of pain and struggles right now.

One thing I learned is when you let your guard down and open up about your fears and feelings then the amazing part happens that others start opening up as well. This I find very moving because when you see your life of balance then the one thing that is hard to hear at times is the part at how every one's life is just so perfect.

How can it be that in the news you read or hear about kids struggling in school and with life, a divorce rate of over 50%, unemployment at a high and and a economy still trying to recover but if you talk to people around you then their life's are just all peaches and cream. The kids are all well behaved with excellent manners, they are all honor students and extremely smart, there never is any discord or arguments in a marriage and money is still plentiful. The question I am asking is 'Who are they?' At times when I listen to people talk I feel like I am from another planet .... oh wait, maybe this is why I am called a Resident Alien :)

Do not get me wrong! I do want my others life's to be happy and of course I do not wish anyone ill!

So to get back to my original thought, it seems the more I open up the more I find others opening up and this by itself is so freeing. Of course that also shows me how much pain there can be and then if you care for them you absorb that pain as well. My thought now is that I wonder how selfish I must have come across when I was so consumed with our fight against JDM and consequently I did not catch some of the suffering around me sooner. It is very good for me to get some compassion back for others!

Hoping that all of you will have a good Sunday.

Hugs,

R A C A

Traveling, Ginger Ale, Crew, Passenger and loosing sleep :)

Not to sure how many days it has been since my last blog entry since I am unable to check right now online but I know a lot has happened and I am not to surprised that it has taken this long for me to find time to sit and down and catch up ...

I will do this in segments because there is so much to tell that I will do separate blog entries and the first is a bit off the JDM subject and will focus mostly on traveling :)

Right now it is 4 AM Mountain Time and we are about 1 hour and some minutes away from landing in Dallas / Fort Worth. Ron is flying to Anchorage all month and this was the time to go with him since the flights were ‘green’ both ways.

This trip we just did to Alaska was a lot of fun and very very busy. It was so wonderful to see the boys watch Ron at work, which of course is nothing new to them but it has been a while since we went on a trip since Connor got sick almost a year ago. We got some precious pictures done in the cockpit and the boys had huge smiles when Ron did his PA’s during both flights telling passengers that his family was on board and even mentioning the boys by name.

We were also spoiled by having a most wonderful crew who took care of us in so many ways. Now Connor and Alexander have enjoyed the attention of Flight Attendants since they were babies by being treated with all the goodies that can come in the form of food from First Class. I still have pictures of them munching away on Haagendaz Hot Fudge IceCream at age 2 :) On this flight we were treated to Hot and Fresh Baked Chocolate Chip Cookies thanks to Steve who was working First Class and made a trip to the back to bring us one each. This flight right now left Anchorage at 8:25 PM at night and it lands here in DFW at 5:30 AM, so after about 1 1/2 hours in the air the boys fell asleep. I took a nap after the movie was over and when I checked on them they both had little pillows under their heads that one of the Flight Attendants had placed there. I know not everyone gets this experience but it shows me how people in this job still care no matter what the politics have done to their work atmosphere.

As a Mom I was of course very proud when I was told by almost all the passengers around us how polite our boys were. Connor made friends with two Gentlemen who sat in his row in front of Alexander and I and I could hear them chatting away for quiet a while until Connor went to sleep :)

Now there is an interesting thought just for myself but at no time in our life's on the ground do I or my boys ever crave Ginger Ale but it is all we want to drink once we are in the air. If you know me then you also know that the boys have no contact with soft drinks in our day to day life's but we threw all this thought process out the door when we step on a plane. Ginger Ale it is and I am not sure exactly why :)

In my next thought process I do not want to pick on fellow travelers ‘but’ I am still stumped as to what people are thinking when they enter a plane.

When we boarded our last flight home this morning from DFW to COS we were listed to board for Group 1 and the only people that boarded ahead of us were First Class and Priority Boarding. We were assigned row 7 AB and 8 AB and to our surprise there was a couple sitting in 8 A&B. When we showed up they laughed and said they were just ‘warming up’ our seats and then the whole row 8 (AB DEF) got up and moved to the back of the airplane. Now this was all fine but they had already filled up all the overhead space for rows 7 and 8 and when they moved they did not take their bags with them. Now who does this? You do NOT sit down on just any seat but look at your boarding pass and go to the row you were given and then please take your bags to store where you sit! Airline etiquette is strange at times.

Since this blog entry is all about traveling I have some big news as well as it looks we will be on the move for the rest of the year.

We got a call from ‘Make a Wish’ yesterday and we are confirmed and booked to leave for Connor’s Disney Cruise October 14 to 21 :) :) :) The actual cruise is from the 16th to 21st but we have to leave home a couple of days prior to head towards Orlando :) This truly is a dream come true for the boys and us as a family and I am not sure how we will ever be able to express our gratitude enough other then bringing awareness to Make a Wish!

Then the next big news is Ron’s TDY transfer to fly out of Miami all of October! This is the first time we will experiment this and we are very excited to be living in Miami, FL for parts of next month.

So and then I got a call from Dr. Rider today and it looks like we will be traveling for D.C. around November 15 so the boys can enter the Twin Study Research and we will finish up the year with our planned trip to Germany again in december to see family and of course visit some Christkindel Markets again.

Just thinking of all that lays ahead I know I have to get myself very organized so we are always ahead with Connor’s Medicine Supply and Therapy plus Doctor Visits.

It will be a quiet a ride but I am very excited about it all since after all traveling is in my blood and I am feeling that we are back in the game when it comes to our life prior to JDM. Yes it will be all much more challenging and not as easy as it used to be but I am all ready to proof that JDM will not have control over us anymore the way it did for most of this year!

Hugs,

R A C A

Day by Day Up-Dates....

My sister and her husband left for home on the 10th of October and it was a very sad day for me. I said it so many times already but it is true when I write that their visits are always a true delight for us. We love all our visitors and each one has a unique quality about them and what we love about Beate and Rainer is the part about their independence, willingness to fit right into our daily life's and and be part of our home and of course the fact how much we enjoy to be in their company. Every night they were here we ended with Rainer starting a fire outdoors and the four of us sitting around it talking. Since the boys go to bed at 8 PM it was a fun and relaxing way to end the day and at one time we sat until 2 AM! A very rare occurrence for me if you know me well. I am the true supporter of needing 12 hours of sleep (not sure this has happened to me since we had the boys) to being able to accept 10 hours but knowing that anything less then 8 hours is painful and should not be allowed. Anyone that knows and loves me knows that it is very questionable to be around me when I get less then 8 hours of sleep and that you never know how my brain might react when it’s main intend is telling me all day that it needs sleep and rest asap. Now putting this aside I was astounded that I did so well when they were here and my sleep pattern was not from 10 PM to 7 AM which is about the norm :)

Connor has been doing fairly well in regards to the JDM and he has been very busy with Therapies. I can not believe I am now not sure if my last blog entry was before, during or after his last IVIG Infusion. This was #8 and we are set up for one more on September 30 and then Dr. Soep will decide how many more we will schedule and how far apart. We stayed on every 4 weeks before so we might possible space it out to every 6 weeks. There is only one complain from Connor and that is the part about his legs hurting more. The blood levels do look decent so the only option mentioned before might be the therapy is getting harder. Connor’s moods are still on the up and down but he still has moments of being very depressed and sad but he tries very hard to ‘act’ happier. I am saying ‘act’ because I am not sure if he really is feeling better of just trying to seem better.... so I keep watching him closely.

School at home is still busy and I am lucky to get such great feedback from friends like Kim and also from the boys last year Cottage School Teacher Mrs. Strubel. It helps so much to have someone to talk to that has experience and gives such great advice. My lovely husband also talked to me about different approaches to take and I think we are making progress. It is however still a challenge to get the amount of school time in when we are on the move so much in regards to twice a week therapy and every 4 weeks the added day in the hospital. For one we spend a lot of time in the car and just for the Hippo Therapy, which Connor LOVES, we are gone from home for 4 hours for a 45 min session. I also thought that we would be able to get a lot done while we are at the hospital for IVIG but then how do you push a child when he is hooked up and being poked and wants to rather do arts and craft and watch movies. I know I can’t blame my boys!

On Therapy days we spend 3 hours at the Center and about 2 1/2 hours driving. Connor of course is busy with therapy so I try to work with Alexander in a busy and very small waiting room.

So my question this time is how do all you parents keep up with a normal school schedule when your child misses days of school all the time due to JDM?

Now if you are one of my many FB friends you also know already about my little household disaster of a dying Dryer last week. Well, it really did not die but the Lint Filter Sensor quit and that means after doing research all morning that it would be very work intensive to have it replaced. To reach that area you have to take the Dryer completely apart. The biggest upset for me in the part of trying to find someone that would do this kind of work was for one all the Home Appliance Repair people listed in the yellow pages seem not to answer or return calls and when I finally reached someone in C-Springs I was told that 'yes' they work on Bosch Dryers but that we are to far out and they only travel as far as Woodland Park! So now I have a perfectly good Dryer that is a good name brand and 'only' 7 years old sitting in our garage because I can't find someone that would repair it in a way that made it cost effective. We are now, 'Thanks' to my Husband and Brother In-Law, the owners of a new dryer that has a 5 year warranty for labor and parts and it was set up and running the same day my other one quit on me. Now is it ironic that I can replace one fairly easily but not get one repaired????? To my Bosch Dryer all I can say is the Craigs List is waiting for you and maybe someone is willing to pick you up and take on the challenge to get you repaired in C-Springs :)

The sad part of course is that we really can not afford right now for any of our appliances to quit on us. We have been juggling a somewhat broken Ice Maker, a Dishwasher that is not drying and a compacter that stopped working. Now all of this is workable for me but a Washing Machine and a Dryer are items that our household can NOT live without. So painful it was but then we know life is not always your friend ....

As to end my writing about our trip to Alaska, it truly was wonderful to see Niki and spend time with Harlow as well. The time there was a sweet and short 24 hours so not really long enough but better then not at all. We also got to see Celeste whose company at the Museum and for Dinner was so precious for me and I have to Thank her again for giving me that great 'Girl Time' and seeing the boys and me not always at our best but still keeping up with us :)

Connor and Alexander really did well on the flights and most of the time there in Alaska but they had a few meltdowns as well by being tired and over stimulated and of course Celeste had the pleasure to see some of this unfold ....

It is ironic in a way how I started this blog to document our journey through JDM and now I am just mentioning it a little here and there. Connor is still in Hippo Therapy and loving it and he still gets his weekly Methrotrexate Injections in his belly. I am a bit worried about his complains lately about his legs and him walking more on his tip toes again but I am also at a stage were I so want a break from JDM and ignore it as much as possible. It comes from having a feel of our past life again, from how we were before JDM hit us and I missed and miss it so much! It has been so beautiful in every way to be back on an airplane and just go and not worry about anything but us as a family being out and about and having fun. Even our trip by car with Beate and Rainer when we went to the Sand Dunes or when we went on the ATV's for the day here in Woodland Park.

I am like a child in some way right now that when I just ignore it I can hope it will all go away. If we did not have the daily medications and the weekly therapies I truly could forget about all of it. I so love all our JDM friends and I love the support I found but sometimes those last couple of weeks I want to not read or hear about the struggles that we are all facing because it keeps drawing me in when all I want is turn my back on it...

Sounding crazy enough for you? I am really at a cross road here .....

So if you have asked me lately about my blog up-date, here it is :) This should have given you enough to read for two days - haha, and I am glad I am all caught up :)

Love to all of you that have been with us step by step in our crazy life.

To Family and Friends!

Hugs,

R A C A