A new Chapter for us!!!

To say I am happy or thrilled would be an understatement! We just got Connor's latest blood work in after his discontinued use of Methrotrexate. The email I received from Michelle was truly the beginning of a new chapter.

Thank you to the amazing and talented Medical Rock Star Team that looked out for Connor in the last 5 years (or close to it).

Thank You to all the tireless work of each therapist, PT, OT, Speech etc etc.

Thank you to all the friends who kept sending love and support even when I was at my most angry and heartbroken state.

I admit everything I look at at our past starts with:

'Before JDM we ……'

'After JDM we…..'

There is no denying all 4 of us are different due to this disease but while I often looked at the things we lost I am also looking back at every step that made us more aware and educated. 

The fear will never leave me completely since he is not in remission yet and since there is no Cure yet.

So here are parts of the e-mail I received this am:

Hi Anke,

I just wanted to let you know that Connor’s labs look great!!!! His aldolase is still pending but his CK and LDH are perfect!!!  I assume that these are the lab that we discussed getting 3 weeks after discontinuing methotrexate?  How is Connor doing?  How is the start of his school year going? 

If everything is going well, we can continue without medications.  We should check his blood tests in 3 months or sooner if he has any symptoms of rash, weakness, etc. …...  If Connor has ANY return of symptoms or you have any questions or concerns, you can reach the rheumatology nurses at xxx-xxx-xxx and they can get you in touch with Dr. Soep. 

I am so excited for him!!!!! Have a great fall!

Michelle

Memorial for a little Classmate...

This morning the boys and I went to the Memorial for sweet little Elina who passed away 2 weeks ago at age 6. 

I would lie if I said I knew the Family. I know I met them during school events and I remember precious Elina from last years Christmas Play where she played a little lost Angel.

We went this morning due to the boys asking me to take them. The Church where it was held was packed and it showed how loved this Family is by the Community. 

I admit I think another reason for such a huge attendance is also due to nothing shaking up a  Community more then the death of a child.

 I would not have gone if it had not been for the boys. To walk into the church and see this tiny casket is just wrong on every level of my being.

Considering our family history it is even more so a hard pill to swallow when listening to the supposed gift it is that she is now in heaven. To hear she is happier now then she ever was... that this is a reason to celebrate and that the grieve felt now is only a sting that is a very short temporary event....

I sat there being grateful in the Families strong believe as I hope this will indeed carry them through this horrid time.

I can't imagine a greater pain, plus I would imagine it to last every minute, every hour, everyday until I took my last breath. If in temporary they mean life, then temporary would mean years and years unless my death came shortly after that of my child.

Connor and Alexander were very upset when we left. Connor said the pain if he lost Alexander would be way worse then a sting. He told me he would feel as if someone took out his heart....

So again I wonder how we can be so different in not seeing the supposed comfort?

My wish to this beautiful family is strength and peace for the coming years.

Surgeries, Therapies and end results ....

We are so thrilled and happy to have been told today that everything looks great and that the boys will no longer need PT and can be off and running on their new feet 😊

So four months of casts, boots and therapy are finally at their end, just in time for school to start. Once again I am beyond proud of the boys for the work and effort they put in and their determination to get better. Brave souls as always!

Hugs,

R A C A

Taking Stock... Medicine Free and traveling

I wanted to write in here the day Connor received his last Methrotrexate Shot on July 12, but for some wicked reason I couldn't. It was as of I did not want to jinx anything and in a way I have been holding my breath for the last 11 days.

For a week following the injection I kept giving Connor the Prevacid and Tums to balance out the shot but since Monday we stopped even that.

I can not tell you how happy but scared I am at this point.

 5 years in the making!

 5 years of not knowing if he will ever get to this point or if he will take a turn for the worse.

 5 years of our life's being impacted in so many ways.

 5 years of all of is changing. In some good ways and in some bad ways.

 5 years to take stock of how we fought this fight and if it was the right way... 

Now on a medical perspective I have extreme self confidence that we moved in all the right ways! 

On an emotional level we all are atanding here with lots of scars on our hearts and souls.

Tne anger and helplessness towards JDM never left me. I do not see a silver lining in watching my son fight this disease and crying through the pain.

Yes, of course we made wonderful friends that will be a part of our life for life. We also lost many friends. I faced complete disconnect towards people that I thought were important to my life before JDM.

Also my faith was put to the test. While so many find comfort in turning towards a Religion I found out that my faith and comfort turned and now comes from science. I guess in a way everyone needs to believe in something.

So the true test of faith comes in 2 to 3 weeks when Connor has his first bloodwork taken after stopping his medicine. 

As to us as a family we are wounded but we are still fighting. We are now trying to repair the wounds we had inflicted and making amends for the wounds we caused. We are all in Therapy at this point and I admit what felt like a weakness turns out to be the key towards healing.nit takes strength to realize we need help.

One of the gifts we have our selfs this summer was the gift of travel. We spend close to 10 days in Florida, playing in Miami, Fort Lauderdale and Orlando.

We then drove to Chicago to watch Niki Graduate from the Navy's Basic Training Program. On the way back we toured St. Louise.

Shortly after that the boys and I drove Niki's A3 Audi to California from Colorado. There we toured and biked along the South Rim at the Grand Canyon. We toured Big Sur and hugged tne huge Red Wood Trees. We then spend two amazing days in Monterey CA were we played at the beach with Niki and her friends, plus toured the Fishermens Warf and the Aquarium.

So we played at the East Coast and the Atlantic. We played in the Mid West through Nebraska, Iowa, Illinois, Missourie and Kansas. We finished up with New Mexico, Arizona and California and the Pacific. We swam in both oceans and it was pure heaven. So you see the healing has begun ....

Hugs, and thank you to all of you who survived the last 5 years with us and are still there! I don't think tne journey is over but we made progress!

RACA

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Colorado Renaissance Festival

One of the most favorite events is happening right now so I want to give it a shout out for all my wonderful Colorado Friends that have not gone to this event yet. 

We are planning on going not this but the following weekend to celebrate my grand daughters 2 year birthday there.

Here is what you can find there:

The Colorado Renaissance Festival, Colorado's premier summertime event, is Celebrating 38 years in a style unique only to those who visit the picturesque mountain venue of Larkspurshire. Patrons take a magical tour through time and legend and enjoy as hundreds of Colorfully costumed characters entertain continuously upon the village streets and on the Festival's 10 stages. More than 200 period artisans sell their one-of-a-kind works and demonstrate their unique crafts along the wooded streets and pathways.

Hugs and hoping you are all having a wonderful summer so far!

R A C A

Happy JDM news for Connor and us! ❤️

On April 12 Connor had his blood taken for a checkup and just two days later I got a wonderful email from Michelle that said that his blood levels were GREAT!

This truly is always very happy news for us but what came in the next email made us some of the happiest people in tne world.

Connor gets to tapper down his Methrotrexate! The last and final toxic drug he is taking for his JDM. If he stays steady and shows no muscle weakness or pain then the next nine weeks will determine if he is on his way in remission... This is HUGE! 

I am thrilled on so many levels including me not having to inject him anymore if the tapper is successful.

Below is the tapper schedule Michelle send me so keep is in your thoughts and fingers crossed it will go smoothly.

Let’s taper as follows:

 

--Decrease methotrexate to 0.6ml weekly for three weeks

--Decrease methotrexate to 0.4ml weekly for three weeks

--Repeat blood tests

--Decrease methotrexate to 0.2ml weekly for three weeks

--Discontinue methotrexate!!!!!!!!!!!!!!!!!!!!!!!

--Follow-up in 3 weeks and get labs at that time

Happy Mothers Day ❤️

❤️The greatest gift of all has and always will be love. Loving others and being loved.

I truly have been so lucky in my life! 

Walking Casts....

Needing to catch up with all the happened in a May....

On April 23 the boys got their so wanted walking casts! Now the process of getting the old casts off and the new casts on was quiet an experience as my two warriors (including me) found out only on that day that both had two pins in their ankles that needed to be removed. It was also a tad terrifying to see the actual surgery incisions but thanks to Sam who had the job to change the casts and pull the pins out it went fairly smoothly. 

Dr. Shaw told the boys he did not tell them about the pins so they would not worry about it and I admit I was glad I did not know either! 

Now for the two weeks after they were allowed to put weight in their feet but still assisted by crutches. After that, Connor and Aleander were told, they can walk without crutches. Ironically both are afraid to put weight on their feet even at the two week mark.

Right now we are facing a new battle, smaller but still keeps me in edge, as of this Saturday Alexander ran a fever of 103 and complaining of a sore throat and stuffy nose. I tried to isolate him and we got the fever down by Sunday afternoon but as of this am Connor is feeling yucky and telling me he has a sore throat. Do off to calling the doctor this am and hoping it is just a cold!

Some tears and disappointments....

This week the boys had their follow up appointment for their surgeries.

I had gotten the date for April 15 when I called the office right after the boys had their surgeries and the scheduler told me to bring them in that day. Now my post op notes said to bring them in 4 to 5 weeks after surgery to change the casts. I had told them on the phone that April 14 is to soon and puts us into week 3. She corrected me twice saying that I was wrong and that we need to be in this week.

Well, we arrived, waited in the waiting room and then were taken to the room. The boys were super excited all day because they be getting casts they could walk on. It was truly all they could talk about since going to bed the night before. After waiting another 20 min the nurse came in and apologized that today they would not get new casts because we are one week to early...... The boys started crying and we all were not very happy at the news. The nurse was super nice and it was not her fault but I was upset since I had told the scheduler that this would be the wrong week. So off I went to reschedule while Ron loaded up the boys. I found out that all the appointments were gone for next week but that they would have to double book us now for the 23rd. So sorry to whoever has an app now for their kids on the 23rd as I am sure there will be a backup.

I think with all that we juggle at home it really is a let down when mistakes like these happen. I was mad at myself as I knew better but once again let my guard down and trusted that the scheduler knew what she was talking about. 3 hours of being in the car, 1 hour of being in the office makes 4 hours that included our boys ending up in tears. 

On a good note, last week the boys got to visit their class at school and we brough Chocolate covered Strawberries along. Lots of wonderful new signatures for their casts and a fun visit for us :)

Recovery and two determined warriors :)

I know every parents is convinced their kids are the greatest and I have to say that I know for a fact that my two dumplings are one of the bravest and courageous souls out there.

It has been one week today since the surgeries and as of now they are off pain meds and have been back in school since Thursday (at home on the sofa with their feet propped up). They are both getting much more confident on their crutches and the most amazing part is that there is no complaining at all!
I admit that I am super grateful about them walking on their crutches now. Carrying 27 kg heavy kids around has been hard and getting up every two hours for medications and bathroom breaks made me feel as if we were back to the Mommy stage of having 'little' kids.

It has been absolute heaven having 'Oma' here as well. To have the help on things that are not elated to the boys care has been the greatest gift.
 YAY for family!

As smooth as most of it went I still keep my fingers crossed that by some miracle we could get around having the same surgery done on their left feet's!

Oh and here is a funny anecdote that made me laugh. When Connor had his worst pain he said he wanted for me to go and get him a white needle for his homemade Voodoo Doll he had made after our trip to Nola last year. I told him I don't have one for him but I could put one in the Doll that I had bought and that came with a white and black needle. Now we had never used the dolls for that regard as it was meant as decoration of sorts. So I took the white needle and inserted it into the right ankle. According to both my dumplings they said they have been pain free since that night… Well, whatever works and I think that little doll might be put to work more often now ;)

Hugs and thank you all so much for checking in 

R A C A

Surgery Day, Oma's arrival and the day after....

Yesterday was the boys Foot Surgery Date.

It had been looming in front of us for weeks and we were so grateful to have been able to go on Spring Break last week to beautiful Estes Park with the Herndon Family. For 5 days the kids and Adults got to run, play, hike, swim, rollerblade and relax in one of Colorados most beautiful sceneries.

This getaway was perfect to get the minds of what was going to happen.

Yesterday, Monday 24, 2014, we left the house at 6 am for a 7:30 am preop sign-in at Memorial North in Colorado Springs.

Connor was kind enough to give the first surgery slot to Alexander who was more anxious since he had not faced a surgery since he was 1 years old.

Alexander received some sleepy Meds about 30 min before he was wheeled into surgery. I got to go in with him and stay in the surgery room until he was put under anesthesia. I admit I expected the same scenario then Connor had at his last surgery 2012. 

Let's just say it was nothing like it! Alexander fought the anesthesia and started almost reacting like a seizure. His body would cramp up and he got all rigid. When he finally was asleep he still was all tight looking and I hated walking out of the room.

Ron decided he would stay with Connor whose turn also went not as smoothly as we had hoped. Ron, Connor and I were sitting in the preop room when I was called after about 1 hour and 10 min that Alexander was now in recovery. While I got ready to leave and see Alexander they came in saying that Connor would leave for surgery. This is when Ron said Connor got very anxious since he realized just as we did that he had never received his calming sleepy Meds 30 min prior. What I was told from Ron was that his turn in the surgery room also did not go smoothly either.

I in return was with Alexander who was waking up and who was very upset, crying and afraid. He wanted his IV out NOW, he wanted to pull off his cast and truly cried for a good 30 min. However, my usually bubbly and funny child pulled through again once we got moved back to the second recovery room. I was blown away at how fast Alexander bounced back and was in happy spirits again. 

Ron, Alexander and I settled into waiting for Connor to get out of surgery and after about 45 minutes into waiting on Connor the Therapy department showed up to give Alexander his crutches and have him practice walking with them.

Connor came out of surgery about 1 1/2 hours later and his recovery was very different. When I saw him first he was one heartbroken little child. He cried and cried quietly and was so very very sad. He stayed that way almost the whole time until we left. He did take some comfort in listening to classical music I let him play with on my iPad. Another strange thing was the fact that the nurse came to see us in recovery saying Connor did not get his pain Meds yet and that he will get them now.

Oh and Connor had an additional procedure done as in finally getting tne pernament stitch removed that the surgeon had left in at his 2012 port removal. It had been in his chest for almost 2 years now and tne bump had irritated Connor and his skin now for way to long. Dr. Shaw told us he could try to cut it out. Well, we all thought, including Dr. Shaw, that it be just a little stitch to pull out. He told us after the surgery that it was a much bigger deal then he had thought. The stitch was long and even had 6 knots in it.

After all was set and done Dr. Shaw said the surgeries went well. We ended up being released around 2:30 pm.

The boys were loaded into Ron's car and while he headed home with them I got into my car and rushed to the Denver Airport to pick up Oma who was arriving on Lufthansa and landing 28 min early.

The home coming was wonderful and it was such a gift coming home to Pizza and Soup thanks to friends who are more like family.

What really lifted all of us up all day yesterday was the huge outreach in messages of support we got! I know I say 'Thank You' alot but truly I can't thank you all enough for the love you showed the boys and us.

The night here at home went very well. Alexander had to go to the bathroom at 3:30 and Ron carried him in and out. I then gave both boys some more pain Meds.

This am Alexander woke up in great spirits. He said he felt pain but he would ignore it. Poor Connor on the other hand has had a truly horrid morning! So much pain that he has been crying nonstop since 7 am. I am religious right now about his medicine schedule and now at 11:30 we seem to finally turn a corner. I called and left a message for the nurse around 10 am but no call back yet which is a tad frustrating. 

So hoping this afternoon will be calmer for Connor and all of us.

Surgery Date is set...

Today the boys and I got to meet Dr. Shaw who will be the boys Orthopeic Surgeon for their feet surgeries.

The date is set for March 24, the same day Oma will arrive from Germany. We will have to be there at the Hospital at 5:30 am and the first surgery, which will be Alexander, will start at 7:30. Connor will get his turn at 8:45 am.

Oma will arrive in Denver arround 3:35 pm.

So I am estimating that on March 25 we will have a very quiet day at home and will all recover from either surgeries, international travels and from just being parents of a medically busy household....

Since the boys put on a brave face about the surgeries but are indeed pretty worried about it I figured we deserved some distraction. So today we went and finally watched the LEGO movie. Scary how I have to admit I am the most crazy LEGO person in our family - lol. We loved the movie and are now ready to be back in a creative mode and ready to throw out all those instructions ;)

Hugs,

R A C A

Surgery update

Today the boys had both PT again and I was able to talk to Ashley who is the scheduler for the Surgeons at the Office.
It looks like the main Surgeon, Dr. Mindy Siegel, is not sure yet when she will return to the Clinic, and in order for the boys surgery to not be pushed back to much we are now going to switch Surgeons.
Dr. Shaw will take a look at Connor and Alexander next week on March 4, and depending how his surgery schedule is like there is a possibility then that the surgery could be as soon as March 26. If for any reason Dr. Siegel returns prior to the surgery she will then take back over.

Alexander was already in his PT season when I talked to the scheduler but Connor was right next to me. So he told them that he wants it done as soon as possible. He wants to be able to figure out how to walk with crutches before his Birthday comes around - Now if it had been Alexander by my side he would have tried to talk everyone out of scheduling the surgery period.
My precious youngest might have had his health battles in his life BUT they were mostly happening before the age of 3, which means a lot of his memories are purely put together from us telling him. He is very scared about all this and of course does not have his brothers acceptance of things. So in a twisted way it will be good for them to go through this together, since one thing Alexander has and that is a competitive streak that might help him recuperate after surgery if he sees his brother is pushing forward.

Hugs,

R A C A

How are you?

Laughing that I am coming back to a post I did a long time ago. I used to be fascinated about the phrase here in the USA where you automatically ask someone how they are when you meet them.

I find it was a strange custom as of course we expect to hear 'Thank you I am fine and how are you?'

We are not prepared to hear any real feelings or heaven forget to be told life is miserable!

Here is my laugh for today. This am I went to the store to buy some dog food and while I was finishing up at the checkout, the girl working asked the gentleman behind me how he was. He said 'Well I think I have a Cold.'. Now that statement almost had me jump three feet away from him, by pure reflex - lol, and I was wondering while I rushed out and away from his possible germs that poor girl at the checkout must be really glad she asked him that question ;)

Truly, here was a guy who answered truthfully but neither I nor the girl really wanted to know. Is it sad he has a cold, yes, but trust me unless you are family it is better to keep that to yourself as we are a society that does not like a proximity to known germs. Unknown and all is well - lol.

So, How are You today?

I am fine, and loved my giggle of the day.

Hugs,

RACA

Make that times 2: Right side tipial derotational osteotomy medial calcaneal slide Evans lengthening.

Since our life is not interesting enough, the medical world thought they make it even more interesting for us.
Today I had a long talk with the boys Physical Therapist  Miss Allison, who when I informed her that Connor was receiving the above mentioned surgery in April, right away asked me about Alexander's surgery date.
Well, I told her that the Doctor said we should give Therapy a try for another three months. She said she would talk to the Doctor but her assessment after 3 months of therapy is that the issues will not be able to be corrected by therapy alone.
As if our youngest had an idea about those kind of news he actually got sick on the drive to PT this am. He had to throw up and Connor being the supportive brother he is said for him to lay back and relax as we were on our way to the Hospital anyway ;)
By the time we got home there was a voice mail from the Hospital and it said that the Doctor looked over the x-rays again and compared Connor's and Alexander's and he agrees that Alexander needs the surgery as well. So they will try to schedule them for the same day if possible. Twins since Birth, twins with the Tethered Spinal Cord Syndrome and now twins in Casts in a bit under 2 months.

They both have been through a lot but this will be the first time they will be having surgeries at the same time and I was grateful to hear that my Mom will be flying in for the boys Birthday in April and hence will be here for the surgeries as well!

The boys are fighters and will get through this Spring and Summer with feet's in casts, I am not worried about them getting through this at all, I am just a Mom who hates them going through pain. So my wish will be that this will be as painless a journey as possible and that by fall and winter they be back to running and skiing or snowboarding.

Until April we will try to be on the go and as active as possible as I am guessing we will be laying low come April……

Hugs,

R A C A

Right side tipial derotational osteotomy medial calcaneal slide Evans lengthening.

Now the headline is lots of names that made no sense to me at first other then the words from Dr. Matt Bershinsky, that Connors feet are very messed up. He said there are so many things wrong that there is no brace or therapy that can correct it. 

Now here is the part that I once again fall back into the 'it is my fault' line of thinking…

When Connor got sick his legs were the first thing to go. His muscles were badly inflamed and were getting tighter and tighter. As a kid he always preferred walking on tip toes but once JDM hit he could pretty much only walk on tip toes.

So after he got out of the Hospital in late March 2010 (after the 8 weeks in the Hospital), he started PT, OT and Speech Therapy. For his legs and feet he had regular PT, he had Hippo Therapy and Water Therapy. In 2012 both his feet were put into casts to stretch his Foot muscles and straighten his ankles. He spend 6 weeks in them and while there was some improvements it did not last  long and just a while after he was back with his feet turned out and on tip toes.

Now we are looking back at 4 years of therapy for his legs and feet, NOT once was an x-ray taken as it was always 'assumed' it was a muscle issue.

On top of this was the stress of the Therapist getting frustrated with Connor and I, as after a few months they thought we were not putting in the work at home. We did do the exercises, maybe bot as religiously as we could have. He had three different braces, that he hated, but that we made him wear.

So what was I told today when he had x-rays taken and the Orthopedic Surgeon came in? His bones in his feet and his Ankles are not aligned with his knees to an extreme that he can not point his feet straight forward without pain. His feet are collapsing in due to the turn of his feet. His calf muscle is so tight he can not get his feet down without pain. So simply said he told us that no brace or therapy could ever correct this. He needs surgery in both feet. The damage is so big that they can't do both feet at one time so we will start with his more sever impacted foot which is the right foot. The first surgery will be set for either April 2 or 9, he will be in a cast for 8 weeks. 

The good news is that the Surgeon is confident that he will run and walk so much better. They will cut the calf muscle as well so he will have a great stretch in his legs.

All in all this is not what we wanted to hear but Connor took it in strides…. I thought we were done with medical stuff and hence I am kind of feeling sick right now.

Here is what I never mentioned in this blog. In my whole life I was always very proud of being healthy. I only went to doctors for checkups and even those I hated. I took and still take pride that I have no health issues worth mentioning and hence only went to a Doctor once last year and have not taken one prescription drug at all last year. The Motrin I used to take for headaches I illuminated last year by starting to juice. No more headaches.

So here you have a Mom who hates anything medical but who hides it well and who bites her tongue and who puts on a smile at every Doctor, Hospital or Therapy visit. I truly can tell you I hate this all more then my son's, who should be more angry at the injustice they have been served then me.

I will not stop or rest until they can enjoy a life that includes health! 

Hugs,

R A C A

HAPPY JDM NEWS!!!

In the week of Connor's 4th year anniversary of being admitted to Chicago's Memorial Children's Hospital we got some of the best JDM related news in regards to Connor's care.

NO MORE PREDNISOLONE/STEROIDS AS OF TODAY!

This is huge in so many ways! The Prednisolone and Solumedrol have been our biggest mental fight and for Connor a physical and emotional fight. We know the steroid is one of the biggest drug in the fight against this disease but watching your son put this drug into his body for 4 years, 1460 days plus, has been heartbreaking in its own way. The side effects are so wide reaching, 'minor ones' are weight gain and slowing of growth. A bigger concern had been his eye sight which were checked almost every 3 months. On an emotional battle Connor had to deal with the mood swings steroid causes. From sadness, depression to anger and frustrations. Emotions that can't be controlled and are all do to the impact steroids have on the brain.

So to get the e-mail that Connor's blood work from Monday came back looking great again and that we can stop the steroid for now was in our book one of the best news we had in relations to JDM in 4 years!
Is the battle over? No not yet. He is not in remission and will still need his weekly Methrotrexate/Chemo injections for now, but one step at a time!

Thank You to everyone of you that celebrated with us yesterday through FB. You all, or most of you, have been with us from the get go and so you realized what complete joy this brought to us.

On a little by note, when I received the e-mail I called everyone together and sad I had some great JDM news for Connor. Connor yelled out; "YAY THEY FOUND A CURE!'. 
This makes you realize how much that is in the front of Connors mind. No Cure yet but that day will come! I am counting on it.

I am off now to take Alexander soon for his Orthopedics Appointment. While one is celebrating progress our other dumpling is worried he might need surgery on his foot or feet soon. No rest yet in the medical world but one step at a time.

Much Love!

Another 'Group' - Home Schooling

How could I possibly have forgotten another group I belong to. Homeschooling as a Family!

I think I forgot it because while so many now home school you often don't consider yourself a part of a group since we all have our own unique approaches on how and why we homeschool :)

Our journey into deciding on homeschooling was at first a free choice that four years ago turned into anecessity. First it was our life style of traveling and my need to expose the boys to as many cultures and believes as possible. Teaching them about their heritage, Russia, and then in equal parts the US and Germany/Europe was a priority to us. By the time they were approaching First Grade we were talking about putting the boys into full time school, however our hands were forced by JDM. Connor and Alexander fell behind by 6 months in their school work due to the hospitalization and medical appointments and therapies. Once we sat down with the boys wonderful Cottage School Teacher we agreed it be best to have the boys redo First Grade. We all agreed how important those early years are in getting a good foundation put into place. Hence we then decided to continue with the Virtual School program of Lincoln Interactive. This program has been a heaven send for my family. We can bring our school with us to medical appointments and other travels. It keeps Connor safe since each time we tried to expose him to a classroom or a group of people in an enclosed space he would end up in the ER. When you have a child with a compromised immune system it is extremely dangerous to expose him to a confined room full of people. We learned the hard way that schools are a fertil breeding ground for colds and flu viruses. Each could be a fatal outcome for Connor. Another big plus for us is that this school program is aligned with the public school here at home where the boys still go once a week for Enrichment Classes as long as every child in the class room is healthy.  Plus all their required State Exams are done at the school. We found a beautiful balance that works for us right now. What the future brings is out in the open but what I want to point out is it took a couple of years to see what would work, and what works for us does not work for another family. Even within the JDM community we all follow a different path because each of our kids might have JDM but react different in form of exposures. Connors body never gives us a slow warning sign when his immune system reacts. In his case it is always straight to a shut down of his muscles. He might have the word Derma in his diagnosis but it is the Myositis part that puts the fear in us.

As to the Socislization part of Home Schooling I actually want to laugh out loud when people bring this up as a worry. Here is where our boys are socialized: They have traveled extensively since age 1. They know better on how to be acceptable of different cultures and people then many Adults. Put them in any new setting and they shine and not shirk away. They have a confidence second to none. Now add the exposure to the medical world. Both of them have a comfort and ease in dealing with people in tne medical community that once again most Adults don't have. They speak for themselfs and asked pointed questions during each hospital stay, doctors visit or in Therapies. I only get great feedback from the Proffessional world of Travel and Medical on how composed, polite and well mannered the boys are. So do you blame me when the interaction to other kids is not my main priority? Oh they do interact with other kids in Cottage School, during they yearly 8 week Ski/Snow Boarding Lessons, during Track Running in the Spring and Fall and then the weekly Chess Club. I know for a fact that friendships I formed in my early years had and have no impact on my life now. They do have wonderful friends their own age but not many. Which is great in my world as quality always trumps quantity. Are there still parts in social settings we can improve? Absolutely. We all can ;) 

However here is the true reason why I want to laugh out loud about the concern in Socialization. NOT because I think our boys are perfect in that regard... No no not at all. They are boys who push their boundaries and they made acquaintances with the Principles Office on several occasions. Once for playing in the boys bathroom with the hand soap and coloring on the mirrors. Once for being openly disrespectful to our beloved Mrs. Struble by ignoring her lessons and not answering her questions and then stepping on a classmates legs on the way out of the classroom. Once for opening the container that holds the Fire Extinguisher. According to my youngest he bumped in it by accident and it opened up but I am a parent who had no issue when this incident turned into a missed recess and time in the Principles Office.  I know they can be scatter brained and they are curious to no end, talk nonstop and they test how far they can push. My question is who has boys that don't? Maybe that perfect child exists somewhere but I can tell that I have yet to meet it. Being a parent and volunteering in school before (not this year) I met many children and while I love and adore many I would call none of them perfect. None of us is. 

So I would never say Homeschooling is better then Public School or Private School. They all deliver in their own ways as long as it matches your need ❤️

Hugs,

R A C A

The need to belong and be understood?

So here I am thinking again and I am wondering if people in general crave to belong to a group and if that gives us as sense on comfort and belonging?

I have the tendency to criticize the Sheep mentality when I feel as humans we to easily follow someone or something instead of stopping to think for ourselves. I often challenge those around me to not take the easy route and follow the stream but to turn and swim against it sometimes ;)

However I am now wondering if there is a need to know that there are others like us and that we are indeed not swimming alone :)

I always believed I did everything my own way and in many ways I feel it fits me very well. I went against the stream each time I felt I was told I could not do something. Often it payed off and other times it backfired.

However back to needing this feeling to belong…. I look back and I realize I do have the tendencies to add myself to certain Groups but also leave them easily once I move on to another interest or subject.

The first beloved group was in the early years of 2000 and was called CAR Ladies. CAR stood for Center of Assisted Reproduction. We were a fun group of women who talked online and met for lunches and dinners and who all had one thing in common, We were dealing with infertility. So all of us went to the same clinic with the hope of becoming pregnant. We were an amazing support for each other as the Invitro Treatments are anything but fun. We could relate to each other on the numerous injections we had to take daily and how our whole life was consumed with trips to the clinic and daily blood draws. Truly I looked like a junkie as my arms were bruised up and down from the numerous blood draws. We cried a lot when the a procedure was unsuccessful. We laughed and were happy when one of us succeeded and carried to term. Those women made this time period bearable in many ways. We all sooner or later lost touch as in time there was either success, defeat or as in our case turning our focus towards Adoption. Of all the great women I met I have to admit I am only in touch with one all these years later……

Then I made the transition into the next Group setting in the form of Adoption Support Groups. In this one I admit I mostly observed as there was a lot of diversity in regards to Adoptions. Those who adopted within the US and those who went Internationally. I did get more involved once we had started the process and we found a support group for just the Agency we were using. Here once again we moved on after about 1 year after the Adoption was final with our Dumplings. I stayed in the group for another year to help those that were just starting the process but life gets very busy when you are a Parent of Twins so this also tempered off. In this Group as well I was friends with many but are now only in touch with one family.

So off I went and found a new group to replace the old. I became friends with other Twin Mommies. I was lucky to meet a fellow Twin Mom at a mall and together we joined a Multiples Club. While I left the Club when we moved from TX to CO, I can happily say you don't really outgrow having twins so we are still friends with many families we met. I joke many times that there is a certain language you speak when you are a parent of multiples and I felt so at home talking to fellow moms that I met. Actually two of my best friends came out of that group :)

Following this came the next group adventure a few years later. This one I did not seek out but were and are grateful for it. I think while I truly did not want to be a part of this group I will belong in it one form or another for the rest of Connor's and my life. That group would be CureJM and just as with the Twins Community, here as well you feel as if you speak a different language that only those in the loop understand.

I guess at this point I am pretty fluent in Infertility, Adoption, Twin Parenting and JDM…… Still learning of course as with everything else it becomes dangerous if we feel we know it all….

So there are certain labels that we receive through our life and some stick and some we leave behind. I embrace the lessons I learned in all of them. I believe all of them shaped my life and might have changed my characters to a small degree. However they do not define me as a person. Just because we have one thing in common with others does not make us clones. Of course I get thrilled when I meet someone in a group that has similar believes and approaches, so there might be a little bit of sheep in me after all, but please remember I do claim the color black - lol

Hugs,

R A C A

Schedules ;)

For me it is always a tad of a challenge to stick to a schedule as I seem to have two powers inside of me collide and fight a battle. One is my German DNA that craves order and reliability, which is fought against with the wicked Gypsy DNA that I somehow got and no one knows from where. My need to be free and impulsive, my desire not to plan ahead or worry about tomorrow.

So I am telling you this because yesterday I sorted through papers for our upcoming Social Security Visit and found the handwritten note that was handed to us when we picked up the boys from the Baby Home on March 26, 2005. They were just 9 days away from their 1st Birthday and of course where still catching up developing wise as they were born premature at 3 lb each in the 33rd week.

I smile when looking at that note as it shows me that in Siberia, Russia they were just as serious about schedules as it was in most parts of Germany when I grew up:

7 - 7:30 Wake Up, sit on their pots if they were dry through the night.

8:00.       Breakfast 1. milk porridge and a small amount of cottage cheese or grated cheese omelette 

                                   Or half boiled egg. 

                               2. A piece of bread.

                               3. Milk

8:30 - 9:30 active time (playtime)

9:30 - 11:30/12:00 nap

12:00     Lunch 1. Soup and piece of bred.

                         2. A cutlet with mashed potatos, rice or buckwheat with sauce. Or steamed cabbage.

                         3. Juice/ light green apple

13:00 - 15:00 active time (playtime)

15:00     Snack Kefir or Jogurts, plus small roll of cookies and some fruit.

15:30 - 17:00 Sleep

17:00 - 19:00 play, walk etc

19:00.   Dinner, Milk Portidge or something like second serving of lunch.

19:30 - 20:00 play

20:00.    Sleep

It truly brings back memories of the Baby Home and while we had to adjust the food since the boys had no teeth at that time I was so grateful to that schedule as both our dumplings napped twice a day without complains for up to 2 years. They slept through the night from 8 to 8 without issues and best of all I had boys who had tummies that never seemed to get sick or bothered by food. No throwing up or diahria in those early years ever.

Now the potty part was super funny however as both were not potty trained at 12 months so just thinking of sitting them on a potty made us laugh.

With everything politically going on in Russia right now it is heartbreaking for us here to watch.  We watch the news as a family and we are sad how backwards things seem to be going. Now Puttin was President when we adopted our boys and what a different Russia it was then. No matter what, we will always be grateful to this Country for giving us the ultimate gift of our boys. The women we met in the Baby Home and in tne Courts, Judges and Lawyers, where people with hearts of gold and who had a deep love for the children of Russia.

So THANK YOU Baby Home #2 for giving us this list on how to take care of the treasure you handed us. We all left a piece of our hearts in Khabarovsk, Russia, thanks to you and hoping for calmer years in Rusdia so we can return to visit!

Hugs,

R A C A

             

Family

When I read about life (and how I love to read!) then I realize more and more what a win in the lottery it seems to be if you have a truly amazing family all around. It really seems rare in the big picture, but I am not sure if it is…..

Out trip to Germany for my Mom's 80th Birthday Party was truly wonderful! The flights all went off without a hitch (not always an easy feat when traveling Standby) and the crews we met where truly some of the best at AA. Attentive, kind and FUNNY. The boys were adored and my heart was so proud once again.
In Germany my Sister Elke had pulled of an amazing and fun Party. There was food to feed about 100 people and the Party itself was about 60 people strong. My Nephew Lukas had prepared a bar that served yummy Non and Alcoholic Drinks all night long (until 4am).
The best part of it all however was being able to visit with Cousins, Aunts, Uncles, Neighbors and Friends. 60 People that mean and meant so much to me growing up and are still a force in my life now. It hit me at one point that this is truly the greatest legacy we are giving our boys. A network of people that show and teach them that kindness, compassion and acceptance are still common and should be something that exists everywhere.
A patchwork of people that come from all different backgrounds, political believes and religion.

Another observation I made for myself is that people tend to be kind and polite towards each other in life if they are face to face. So I am wondering if access to a keypad and touch screen really changes how we interact. There are the moments we feel the need to critique each others political opinions, religions that are present or absent, we brag about our kids and how we all have that perfect family, kids, spouses, life. People will call each other names so easily but I wonder if they had to stand in front of a crowd and call someone a hateful name would they still do it? I doubt it ;)

I remember how long ago, 1996 to be correct, I entered an elevator in a high-rise in Miami. A man was already in it and I said as usually 'Hello, how are you today?'. His responds was not what I expected as instead of smiling and saying 'Fine, Thank You, how are you?', he instead started crying and told me that the love of his life had just left him. Back then I was in my early twenties and was not truly equipped in giving him counsel in any form. I told him I was sorry.
If he had posted his heartbreak on FB nowadays I bet he would get countless replies from friends and acquaintances within minutes. 

Today I wondered about my integrity as I was upset to find a Van stuck in our driveway this morning. We had an appointment with a company who told us they be out today to replace both our car windshields this morning. Then they show up with a two wheel drive van that had pretty much bare tires as in hardly any thread left on them. I posted it on FB as I just don't understand why any business or person who lives up here and works up here does not own a reliable 4 wheel or front wheel drive vehicle that has good tires. It bothers me because I see it as a safety issue. It shouldn't as it does not impact my life but I do not want people hurt or stuck somewhere in the Mountains when it is cold and often no cell phone reception is available. In our case we had a clean driveway and Ron was able to pull them up.
 So when they were done I told them that I worry about them driving this van. Both of them were young men, much younger then me for sure, and I was actuality surprised to see them ask me for driving advice (yes they looked serious!) So here I was telling them about how important it is to downshift on a downhill pass or slope, and how they would have made it up the driveway if they had kept up the speed in their van. I know having a good car is an expense and investment, but I believe it is an important factor for us here in the Rocky Mountains.
I admit I did not expect for them to listen to my advice as I find men especially are sensitive when it comes to cars and driving. I love cars and I love to drive.

So I guess when I reaxamine what I say to people and what I post online then I am truly feel I am honest. I look at what I post, may it how I feel about things, how I stand politically or in my believe and I know for a fact I say the same words to people just the way I type them. No guessing for anyone where I stand :)

I think that is a good thing. So back to having a great Family. I think it is possible for most if one agrees to disagree. So does the PERFECT Family exist? NO, do great Families show respect towards each other? YES

Hugs,

R A C A

Super Powers over the ages :)

Since I have boys the conversation about wanting to be Super Hero's comes up often, as in daily, in our home. So after asking me over and over which Super Power I would like to have I had to sit down and tell the boys that they actually change with age.

I know in my teens my wish was to ace every test and make teachers I hated disappear. No worries, as far as I know my super powers did not work and they are all still alive and breathing, plus I did not ace every test ;)  However there was the one teacher that kept telling me if looks could kill he would have dropped dead.

On to my 20's, that was my naive kind of years when I followed my dream and got a job I loved and believed with all my heart that my magic power was kindness. Kill them all with kindness and if I am sweet and nice they will all like and love me. Well, I left that behind in my 30's when my super power dream was to know every language spoken in this world and to understand very code ever developed. I figured if I had this then I would be set in life. Can you imagine the job possibilities? ;)

Truly looking back all my so wished for powers were truly always focused on how to make my 

Iive easier and no it did not change much in my 40's.

So moving on to motherhood and coming face to face with JM. Now I always figured there were limitations to Super Powers as in not being able to ask to find cures and save life's. After all that game was left for the highest power. To give and take life.

So what other gift could I give to people? By now you realized my mind can be, and most of the time is, the most unexpected. So for my 40's I would like to be a kind of Angel of Death. NO not the one that delivers death but the kind that could look at others and see in there eyes the day they will die and how.

I think this would be a tremendous gift, even thought life insurance companies would hate me!

If I could tell those that would like to know, when and how they will die that would give in my eyes pure freedom. If you know you have 50 more years to go you would know to invest carefully for old age and start taking better care of your body now so you could be an active 90 year old (in my case ;)

Or I could tell you that in two years you will have an deadly accident. Well can you imagine all that you could do to prepare things for your family and then go and do all the things on your to do list but wanted to safe for later? Like travel to Nepal for example.

I would give so much for the peace of mind in knowing if Connor and Alexander had full life's ahead of them or will something like JM cut for example Connors life short. Would I then not parent differently and show them things that we would usually safe for later?....

I admit this thought process came when hearing a story of a family who lost a parent suddenly through an car accident. I heard this and my first thought was if I had to die now I would wish for a slow death as in Cancer. When I was young I would have wished for a fast and painless death but as a parent I feel I need a heads up to prepare things and be able to say my goodbyes.

So my power I want is to take the mystery of death away. We all know it will come at some point and what I woud give to know the when and how. 

Some might find this very weird and strange. I would find comfort in it and think there might be some others as well. Should I ever come to it fear not. I would not volunteer my information unless asked for it - lol

So please tell me what would be your Super Power? And why?

Hugs,

R A C A

Question... Is having an Illness or Disease a 'Get our of Jail' Card?

My mind has been going over this question now for a little while and I can not seem to find a concrete answer as I guess this truly and sadly not black and white, but then what is ;)

I think I talked on my blog before how Ron and I had to make a decision in how to parent Connor after he got sick. There is a certain mentality that comes with being sick that can cross over to entitlement when so much attention goes towards someone you feel bad for. For us the call was easy. Connor would be treated the same way, everyday, in regards to rewards and discipline for his behavior as we were treating his twin brother.
Yes, there are some things as in helping around the house that we had to adjust but Connor's strength is in doing things stationary so he could write or help in the kitchen while Alexander is the more active one who then helps with setting the table or getting our drinks set up for dinner.
As to behavior, we realized that Connor picked up an attitude when he first came home from the hospital that the world should be focusing on him. However I feel almost every 5 year old feels that way to some degree. We sat him down and made it clear that he is an equal part of the family and NOT on a higher pedestal then his brother. 
Was it harder for him to learn to control his emotions? Oh yes. We are talking about a disease that needs medicines that are very mood altering. He had less patience and was more moody, but we told him if in any form his behavior is hurtful to anyone he will have to face the consequence. Punishments in our house are usually a writing assignment about what the offense was and then a letter of apology to the person that was hurt and having to read it out loud to them.
Four years later we still deal with some issues but then what is part of life and what is due to a disease? Let's face it as I keep saying none of us is perfect. 
I for example get very passionate about politics and religion and there are times I wish I would not react so fast but sleep on it. Easier said then done. I need to realize if what I say works towards making a situation better or is it just igniting a bigger fire? I find out often it is not for the better ;)
Alexander, my baby boy, is challenged in the slowing down part. He reacts and acts even faster then I do. Everything has to happen fast. He never learned to walk but started running. He eats fast, he talks fast etc etc.
We all have our issues and many times how can you say what is related to a disease and what is just part of growing up?

I am mentioning all this because I have been observing a behavior online that makes me worried.
Can you as an adult go and enter political discussion, get very vocal, accuse people and even call them names but when the accused fight back then stop and pull out the 'Get out of Jail Card' as in 'Everyone is mean to me when I am fighting a Disease'. Now the phenoman is that for many of us our first reaction is 'Oh no, I am so sorry you are dealing with this. We had no idea and how horrid people will argue with you.'
Now jump forward and you see this happen over and over again and each time the aggressor is the same 'sick person'. Does at one point the 'Get out of Jail Card' be removed?

Does a diagnosis automatically give you the right to act and behave in which ever way you want?
Let's say you know a person that was always rude, a bully and aggressor. Now that person gets Cancer. Will that automatically turn them into a saint that has all the answers and wisdom? I think some belief it is, I personally don't.
What was before unacceptable behavior is now excused by 'Oh but they are so sick'?

How then about people in Prison? I am sure we can find all kind of sick people there, too. So if they have Cancer for example does that excuse the crime they committed?  Or should we let people out of prison if they do get sick with a disease that has no cure? 

I guess I am truly just brainstorming how I feel but do want feedback. Is being sick an excuse to behave badly?
Should we give leeway to those we know that are facing a battle?

Hugs and already thank you of your thoughts.

R A C A

The need to read......

The fear of running out of 'good' reading material. I read all the time. Well almost all the time as I do sleep, eat and drive places. But here is the sad part, when I am not inhaling a good book that keeps me locked in then I start reading whatever poppes up in front of me, including bad and sad things in the news or on people's walls. Those are the times I feel I need to react and respond. So if you want to hear less of my opinions then for goodness sake keep good book ideas and reading materials coming my way - lol

Truly I think I finally figured out why at times I am very politically embattled on FB and I am more active in writing in my blog and in return why there can be weeks and months I do not write into my blog at all or are more quiet on FB. Looking back it is during all those times that I was either inhaling a book or book series or I was on a dry spell searching and searching for good reading materials. So if books were not filling the void then news clippings, other blogs, peoples postings would suck me in. We all know I like to respond to just about anything ;)

Hugs,

R A C A

Happy New Year 2014

So last night I had the joy to party at home with two 9 year olds and one beautiful 80 year old until 1 am.

Next I know I wake up at 8 am, truly at 7 the first time thanks to Bella, but I did manage to get out of bed by 8 am. I feel as if I have a hangover even thought no alcohol was served last night ;) is this the side effect of getting older??? At 42 I now have the joy of feeling slugish without even getting the joy of having a drink? 

So that makes me wonder if I have a drink or glass of wine but go to bed on time (have I mentioned my body needs 10 hours of sleep?) would I feel the same? I am getting out of practice here as my new comfort drink is just Sparkling Water. Which brings me to another point... Why can my beloved Sparkling Water be almost as expensive as liquor???

As a child growing up in Germany we always laughed at the fact that Beer and some Wine was much cheaper to order in a a Restaurant then Coke or Soda. Which explains why many of us prefer Beer or Wine - lol

Anyway, looking around me right now I see a wide awake and spunky 80 year old (my Mom) and of course very awake 9 year old dumplings moving about. I am the only one that wants to just curl up and not move. Strange setup as I am usually the one that seems to be the one motivating the others...

So after my pitty party yesterday afternoon about saying happily goodby to 2013 I am now ready to give 2014 a chance to deliver the year I dream of. A Cure for JM, and other then that no highs or lows. I want a a Vanilla kind of year that in retrospect will go down in the books as uneventful.

I did pick a word to guide me this year (thanks for the idea to my friend Kim) and my word that I want to focus on is ACT. I want to try and act more before I have to react. To be a step ahead and not always feel like trying to catch up would be huge for me. 

Hugs to all of you my beloved Family and a Friends. May 2014 be the year for you!

R A C A