One week I rather skip but as aways life goes on :)

Hello to all my precious family and friends!

I have to tell you that this last weekend was pure heaven for me and that for the first time in so long I was almost able to forget that Connor was sick. We had a fun and also relaxing time at home as a family of eight and even ten at one point, Oma, Opa, Niki, Harlow, Sam, RW, Connor, Alexander, Ron and I. We even got a wonderful visit from Shelly, Clare and Alexander. Connor was mostly quiet throughout all of it but he was very charmed by Harlow and he was very sweet to her throughout the 5 days. Do most of you remember the countdown we had when Niki went into labor with Harlow while we were holed up at CMH in Chicago. Now Harlow is already 10 1/2 weeks old!!!!! crazy how fast time flies!!!

Connor did have some issues with his port and I talked to Dr. Soep's Nurse Michelle about it and we will keep an eye on it and if he keeps getting low grade fevers as well then they will order a blood culture to see if he might be fighting an infection. He will have his infusions again tomorrow morning so I am hoping that the access to his port will be pain free this time around. We also have a new schedule for Connor's next IVIG which is planned for May 6 at 8:30 AM, he will also have a Dermatology Appointment while he gets his infusions that day to have a look at the multiplying warts on his foot. Remember he started out with one when he first showed symptoms of JDM? well I am as of now counting eleven! Dr. Soep also put an order in for 6 more months of IVIG, so we are booked until October :)

So and then the sad part that I am facing this week is Niki and Harlow leaving yesterday and on Friday we have to say Goodbye to my Mom and Dad. As always this will break my heart and I so hope that we convinced them all enough to try and come back here in June or July.

Today, my Mom and Dad had a wonderful one hour massage at the 'A Rub Above' that included time in the whirlpool as well and I got treated to watch AVATAR while waiting for them :) Ron also took Connor to see the Psychiatrist today and I guess it went well but Ron told me that Connor acted bored throughout most of his one hour session. Ron however did get a report from the Doctor about his assessment for Alexander last week. Remember how I wrote that he told us Alexander was a VERY active child? Well he told Ron today that Alexander matched 7 out of 9 markers for BOTH ADD & ADHD. He however also said that this is not a bad match up because when you can get some control over it then most children with this are extremely bright. Well that alone is not a big surprise to me because as you might know my boys are of course very smart and bright :) I will now go in next week and talk to the doctor to see what our next step will be.

Before I finish my blog for tonight I do have to say that I am not happy in regards to Connor's Speech Therapy. When we stayed at TCH in Denver, of all three therapies, Speech was his favorite at times because he did not have to move and they played games with him while he had to sound out words. Since we got home the one therapy he truly dislikes the most is Speech. I do believe it has to do with a personality clash. The Therapist that comes to our home is more pushy and also critical. Today I came home right when she was leaving and what I found was a son that was in tears and feeling miserable. He said she thought he did not do his home work (which is NOT true) and then she wanted him to say 'Ladder' and 'Truck' and he was told that he was unable to say them right. I listen to him say 'Ladder' and it sounded fine, now 'Truck' did not, so I know he needs help but why be so critical to him instead of trying to turn it into a game? Needless to say, he does not want to have Speech Therapy anymore and Ron told me he will make a call tomorrow to see if we can get someone else.

I am feeling extremely tired today. I told Ron I think finally my body might be catching up with my brain. It's almost as if this fight we entered is finally getting to me and some of my spark is leaving. Maybe I am not angry enough anymore for me to go off on little tantrums on my blog - Ha Ha

Oh, and I almost forgot! This last Saturday was Ron and mine eleven year Wedding Anniversary. I can only say that I am so blessed to have married my best friend! I always write about our journey with JDM but my goodness what a journey Ron and I had until now ..... eleven years that never for a minute could be considered boring :)

Love,

R A C A

Chicago, the Northshore, Lovely Miller Family, Dr. Curran, Dr. Pachman and back Home to see Harlow and Niki :)

It feels a bit intimidating to even start this blog today since I have not just one week to catch up on but a very busy week after all.

This last week on Tuesday, Connor and I left for our trip to Chicago to see Dr. Curran & Dr. Pachman at CMH again. Traveling by myself with Connor and his wheelchair sure brought back some memories to our travels with the twin stroller. You definitely have to plan for more time at security :) I have to tell you however that our experience with TSA was very good overall. The only hiccup was the confiscation of my lotion and Connors Toothpaste. You think I learn from all our previous trips but oh well. Connors assembly of medications however went through without a problem, Thanks to the Doctors note we got from Dr. Soep. Of course it was her Nurse, Michelle that might have done most of the leg work for us and we so appreciate having a contact to Dr. Soep that is that caring and organized.

The next pleasant surprise was our listing for First Class, Thanks to my husband and our son's being 6 years old now and therefor qualifying for F/C on a two class aircraft. Connor did not stop smiling for the whole duration of the flight. It shows it does not matter what your age you still appreciate having room when on an airplane :)

You might remember that we had the luck of having the best roommates while we stayed in Chicago for three weeks in January to February. First we had Henry, who we all adored and who made us laugh. His parents where so wonderful to talk to and this is something that you truly cherish when you spend time on the 4th floor.

After Henry was able to leave for home we got a new room-mate, Grant. I truly consider us extremely lucky that we once again got to share a room with a family that was wonderful in every way. Never would I have said, before this all happened with Connor, that I would connect with someone as fast as we did when we were at CMH. If you had told me that we would come back to Chicago and stay with someone that we had known for just a bit over one week I would have thought you crazy :) However, Connor and I did come back for his Check-Up and took the Miller Family up on their offer to spend the three days we would be there with them. Connor was in pure heaven, too, to spend time at a home that was prepared to handle boys and I even found time to sit back and relax for a time.

We got a very special treat getting a tour of the North Shore and we fell in love with our first experience of a 'real' Chicago Hot Dog at the Superdawg Drive-in. It was the original building build in 1948 and I have to say we loved every bite :)

So Connor had his Check-Up on Wednesday, April 21 at 4 PM. Kim and Grant were Angels to drive us to our Appointment, which took about 3 1/2 hours in the end. When we first arrived we met Dr. Pachman in the hallway and shortly after Erin. It was so wonderful to see Erin who will always have a huge part of our heart for being the most caring and fun person to us but mostly Alexander when we stayed at CMH.

Connor had a very intensive therapy assessment that took almost one hour. Everyone that saw him commented on how much progress he was making and Dr. Curran even joked and asked why I brought Alexander and not Connor to the Appointment. Connor of course was thrilled to hear her say that she thought he looked like Alexander - ha ha

I can't wait to hear what they thought about Connor's progress to tell you the truth. The two girls that looked at Connor used a little stop watch to time him holding up his arms and legs. In one exercise Connor asked how long he had to hold out his arms and she replied '2 minutes'. When he dropped his arms she told him he did a wonderful job so he asked how long he was able to hold them up and she replied '18 seconds'. Connor was all smiles as was I since those 18 seconds are a huge accomplishment! The sad news however for Connor was a 'NO GO' on the Trampoline. We might even have to consider the swing. The therapist said that for children with JDM and Connor the Neck Muscles are to weak for attempt this. She also asked about his home therapy and she things that he is being pushed to hard at this point and that we will have to scale back on what he should do at this point. She mentioned that if he shows signs of tiring during his sessions and if he is sore the next day then they are to hard for him. Both of those have been true since we got home. He usually tires about 30 minutes into the therapy and always is stiff the following day.

There was also another assessment by Dr. Curran and Dr. Pachman and to finish the appointment he had 10 + vials of blood taken again. This was the first time he truly cried when his port was accessed and he cried again when we had his port accessed once again yesterday at home for his Solumedrol and Methrotrexate plus blood work for Dr. Soep. I left a message with Dr. Soep's nurse to see what could be causing his port to hurt .......

We ended our night with a Chipotle Dinner and another nice tour of Chicago :)

THANK YOU to the whole Miller Family for being such gracious hosts and making this stay so pleasant for the tow of us!!!!!

We came back home on Thursday, to Connor's disappointment not in First Class but at the Bulkhead :) I so want to Thank TSA, the AA Gate Agents and the In flight Crew for being truly wonderful to Connor and I. Very helpful and considered every step of the way! We had a female First Officer on this flight and when we got to the Gate in Denver she went down stairs to get Connor's Wheel Chair and then helped me with my bags up the Jet Bridge. We are always so quick to complain when the service is not so good so I want to take those few words to say that my whole Airport and Flight experience was a wonderful one this time around :)

Now it is Saturday and we are HOME. The best part of ending our trip was my beautiful step daughter Niki arriving in Denver with my equally beautiful and gorgeous 10 week old Grand daughter Harlow. Those of you that follow my Blog have already read the countdown to her birth and I can tell you it is the most wonderful therapy for all of us to be surrounded by family we love so much and to be able to hold a Baby that is so pure and just starting her journey and adventure of Life.

I am sure I forget allot about what happened this last week but I am just skimming the surface now so I can get something out on the Blog :)

Connor did get scheduled to come back to Chicago next month on May 19th.....

Thank you for traveling along with me through your e-mails and FB messages! Sorry I have been a no show this last few weeks BUT I do read them all and love the comfort they bring me :)

HUGS!

R A C A

Day 29 at Home ... For my Mom :)

Friday, the day after the infusions!

Not sure if this is the same experience for all our JDM friends but for Connor the day after the Solumedrol and Methrotrexate Infusions are really hard. He woke up all moody and achy feeling and when I took his temperature is was a low grade of 99.8 F. We found out that those days that are best spend on the sofa watching TV ....

Today I want first of all Honor my Mom in my blog and it is ironic I am doing this in English since she won't understand what I am writing. I have been very blessed as a child to be born to Parents who in every sense of the word were made to be parents. There was unconditional love and most of all patience without boundary! Raising five children is never an easy task and maybe the most challenging one of them all was myself, the baby :)

Today my Mom and I got a day 'off' and we left right after breakfast for some shopping in Colorado Springs followed by lunch. I truly love spending time with my Mom and she will always put me in awe at how selfless she is when it comes to helping others, how she never says a bad word about anyone and has always been happy with her life. She resembles the true meaning to the saying 'Beautiful inside and out'. When I was a small child there was a black and white picture of my Mom taken on a boat trip she took with my Dad and Family. How I loved looking at that picture and I kept telling her over and over that she was the most beautiful woman ever and she always laughed and said that this was due to her being the only 'young' woman in the picture. Trust me when I tell you this is not true but it once again showed me that my Mom never counted on her looks as something that mattered a lot and she was never vain .... So the true beauty is and always has been her heart.

So to put this all in one sentence .... the two of us had a wonderful, fun and relaxing day today and when we came back we were very happy and grateful to see all four of our men again :) So THANK YOU to my wonderful husband and for my precious Dad for giving this day to us!

I am looking forward to our weekend and also to next week which will be an adventure again. For one, Connor and I are heading to Chicago for his check-up at CMH and also for a Mini vacation with the beautiful Miller Family. Can't wait to catch up with my little sister :)

And for another, next week will be Alexanders first meeting with a Psychiatrist, who I am guessing has a good feel for kids because the first meeting and appointment will be held at McDonald's. Talk about taking the pressure off!

I am so so hopeful that this will be leading us into the right direction because it almost hurts to watch Alexander at this point. He is constantly moving and even when he tries very hard he can not seem to slow down. I took a nap with him the other day and his legs wiggled non-stop. I asked him to lay still and he started crying and telling me he can't. Another symptom he has is his constant talking. He always loved to talk a lot but now he just can't stop. When he is not talking he us humming....... .

We figure when this whole thing is over our whole family will be in therapy but for now you all are mine because I use this blog as a sounding board - ha ha

All the Best!

Love,

R A C A

Day 27 at Home .... All about Honesty :)

It is already Thursday and I am really starting to slack of on writing in my blog.

Maybe we are entering the 'Groundhog Day' movie area. It feels like each week is falling into a rhythm of repetition. Connor is still getting Therapy, PT, OT and this week he got his first In Home Care Speech. So maybe we are not quiet in a repetition but getting there.

When it comes to Connor moving he is truly making improvements. The one therapy that did not sound as promising was Speech. To me he sounds so much better but according to his Therapist he has quiet some work ahead of him. This must be the obstacle about being the parent when to yourself your kids of course are perfect. I am still, after five years worrying a bit however if I am the handicap when it comes to their speech due to English being my second language and knowing I don't pronounce everything right either ....

Usually you all have to wait for Sundays when I throw out what has been on my mind :) but this week you get a treat on a Thursday - ha ha :)

When I first started flying with AA in 1996 I was based in Miami and shared a Studio Apartment on South Beach with my class mate Stacey. I found myself one day on my way to work faced with something that rings a bell for me know, 14 years later. I had entered an elevator that was occupied by a young man. I asked when I got in 'How are you?' and was taken back when instead of him telling me 'Fine, Thank you, How are you?' he started to cry and said he was feeling badly because his partner had just broken up with him and that he just was heartbroken. I have to admit that I was not sure how to respond so just told him how sorry I was and that I hope things will work out. I felt strange because I was still fairly new to the country and knowing that 'How are you' is what everyone says, you also always got the response 'I am fine'. Never before had someone taken it literally!

Now for the first time I am confronted, Thanks to our journey with JDM, how washed out it sounds when people out of habit say they are fine. A lot of friends we meet can honestly say to us now that they are not fine and that life is not all one happy day after another BUT they can't say it to friends or people around them that are not touched by some tragic event because for one they don't want to face the truth that you might not be doing well and second because it makes people uncomfortable, just like I was 14 years ago in an elevator faced with a strangers heartbreak.

So from what I have experienced recently I have to say looking back I prefer the honesty I got when faced with my question 14 years ago. I think I much prefer to hear the truth from someone then the customary 'I am Fine'. Granted in the big picture we might all be 'fine' since there is always someone worse of then us but why can I not love my life but still have an off day???

From now on I think we should only ask 'How are You' if we are prepared to listen to the answer and if we rather not then a friendly 'Hello' will do just as well :):):)

Hope your week is going well!

Hugs,

R A C A

Day 24 at Home ... Monday, Monday ...be good to me :)

A record that I went for three days without writing in my blog :) I am sure you all enjoyed the break as well :)

Our weekend, starting on Friday, went really well. On Friday our whole family went to the movies, Connor, Alexander, Oma, Opa, Ron and I, and we loved it. We went to see 'How to train your Dragon' in 3D and it was a wonderful movie for all of us and we range from age 6 to 76! If you have not gone to see it I highly recommend it. It has a beautiful Story line :) The 3D part was funny because it was a first experience for the boys and throughout the movie they kept reaching out trying to touch things :)

We ended up going shopping right afterwards and that might have made it to long a day for Connor. He did very well at the movies but then tired out fast.

On Saturday we had a fun day outdoors. The weather here in Colorado was gorgeous and after a bit of convincing we got Connor to go outside to play ...

I believe I said this before as well but if not then please know that I am a HUGE fan of IVIG! Connor made tremendous improvements after his first IVIG and now after the second treatment he made even more improvements when it comes to him moving and getting strength back. He asked to sit on the swing and he did it all by himself. Even last week he had not enough strength to hold on without support and now he sat on it for a good 10 minutes and being able to hold on by himself ... A M A Z I N G!

He also asked to go on the Trampoline which of course is a big 'No No' for children with JDM according to the book 'Myositis and You', but we went with our feelings and Connor's determination of wanting to try it, so he got on. Granted he is unable to jump by himself and stand without being held but the smiles he gave by just being on the Trampoline was worth so much. I am not sure if I explained previous but a lot of children with JDM have a problem with a very weak neck. Connor does too, so we always have to be careful that his neck is supported. That's why Trampolines are usually a very bad idea as are contact sports in the future. So no football for our dumpling but that is not to much a heartbreak for me but the Ice Hockey or Karate is harder to take - ha ha... Just KIDDING ... I am grateful everyday to have our boys no matter what their physical conditions are. If they are breathing I am happy :)

So, Sunday went just as well as Saturday with all of us spending time at Home and outside. The dogs loved it as much as we did and it was very touching to see Tasha and especially Apple follow both Connor and Alexander everywhere they went.

Today, Monday, Connor had PT and OT in the morning and it went extremely well for him. He is making so many steps into the right direction and both Therapists, Miriam and Tonya are just Angels! They make therapy fun for him and that is all the magic that is needed.

I even got to pay some more bills which of course is 80% medical related. Interesting to see the Ambulance Ride from CMH to the Airport cost $1750.00 total with us having to pay just $210.00, and we did get the bill for our stay at CMH which came in at $102,578.92. I am not mentioning every bill that comes across but Ron and I figured we reached the $500,000.00 mark easily. Just think this could mean a second home somewhere on an Island .... and of course that also means that in 4 months Connor made a decent dent into his 5,000,000.00 coverage for life. Lets see what improvements the new Health Care Reform will bring him when he comes of age and will not be covered anymore under our insurance. But I am past this right now as I am back to worrying day by day and not looking to far ahead. I will leave that for another day :)

I hope you all had a pleasant weekend as well!

Love,

R A C A

Day 20 ... back to TCH but only for the Day :)

Today I want to start my message by remembering Hope who went to Heaven one month ago .... We as a family still think of her and hardly a day goes by without Connor or Alexander mention her and asking questions to the 'whys'. It really makes me pause lots of times when I think how life for all of us goes on and what does it truly feel like if we or you were the one that lost a child? Life as we now know it would never be the same and how do you move on when a huge piece of your heart is missing? So lots of Hugs to Hope's Family today!

Today Connor and I returned to TCH for his once monthly IVIG infusion. We left the house at 6 AM and got here around 8:15 AM. First Connor had some blood work done and then after his dose of Benadryl and Tylenol he was hooked up to his Solumedrol (Steroids), followed by the IVIG and he finished with the Methrotrexate (Chemo). The whole event took about eight to nine hours and then we were looking at our 2 hour plus drive home. Connor is taking it fairly well and it helps tremendously that he has Emma and her parents here as company. We got to see Dr. Soep and his blood levels look very good. We will stay on the one pulse of Solumedrol per week for now which just sounds wonderful.

Connor also asked his nurse Amy if he could visit the seventh floor to see his former nurses and Therapists and he was to proud to show them how well he was doing and he walked the whole way from the 7th floor to the 6th floor. He has not walked this much in months. I brought the wheel chair with us just in case but he did not sit down once.

Him and Emma also got to do some painting that Amy set up for them and I got busy cutting some Birthday Cake we picked up on our way to the Hospital. Emma and Connor looked pretty funny delivering cake around the Infusion Center with a plate each on their IV Pole.

After all, our day went really well and actually the eight and a half hours we spend at TCH went by very fast Thanks so much to Emma, Dawn & Kent. How much difference it makes when you have fun company when dealing with infusions.

Connor fell asleep withing 10 minutes of leaving the Hospital and then we got a beautiful surprise from my husband, Dad, Mom and Alexander who met us in Woodland Park for a Mexican Dinner. Can I say how good the Sangria tasted? :) My Mom who hardly ever drinks had a Margarita and a Tequila and she was the funniest little tipsy person ever tonight :)

We ended the night having a small Bonfire roasting Marshmallows and the boys loved it. The first one for us this year ... I was told it was warm all day here in Lake George and Ron plus my Dad did a lot of work splitting wood while Alexander got to enjoy the trampoline and play ground again.

Thank You all for the beautiful messages Connor and I got thru FB. It was in a strange way nice to go back to TCH and see all the people that have been such Angels to Connor while he spend 31 days there.

Hugs,

R A C A

Day 18 at Home ... A day with NO schedule :)

Okay I am not trying to jinx our luck by posting how many days we are Home but I thought I will count to 51 days as this was the number we all had the pleasure to stay in a hospital ...

Today is a great day here as it seems to be back to as 'normal' as it can be. No infusions today and No therapy. Yes, Connor still has his big line-up of medications but this is almost getting second nature. He is making improvements in Therapy as well and it really is interesting to notice that the area that he lost movements first is the one that takes the longest to come back. For him that means his legs and feet. He is still at 'fall risk' so we have to walk with him and hold him but he is now attempting to do one step up on the stairs that leads from the living room to the hallway. He uses his upper body strength that is coming back to pull himself up on the railing. Really wonderful to watch if you have seen how little movements and strength he used to have.

I forgot now if I posted already that our check up in Chicago was moved now to April 21st? Connor and I will leave on the 20th and return on the 22nd. It will be a quick trip this time since my parents will stay home with Alexander but the biggest news is that Niki will fly down from Anchorage with Harlow Olivia to stay with us for five days! I am planning a trip to Babies R Us and wonder if all the memories come back when I used to shop for Connor & Alexander. When did we move from Winnie the Pooh and ELMO to Star Wars and Indiana Jones???

So when I got my Wii on Christmas 2009 I was promoting it left and right because I was so in love with it and I thought Nintendo could have paid me for talking so many of you into getting one - ha ha, and now I am in addition a big fan of Sony's PS3. How much fun can a grown-up have playing Star Wars Lego? and the graphics are just wonderful! I am stuck to it each night after the boys go to bed and it is addicting. Well I am always in love with technology so it might not be a big surprise to my immediate family ...

However, the reason I mention it is not to bore you BUT if you have more then one child and you are open to video games then all the LEGO ones are wonderful. For one there is no violence other then LEGO pieces falling apart but most of all it teaches them to play together. You are always a team and never an opponent. You have to make sure you stay in pace with your partner and defeat the enemy together.

For Connor it is still great therapy as well, as we firmly believe it was coloring and playing PS3 and X-Box in the Hospital that got him his finger movements and fine motor skills back. Still shocking to me how fast we changed our parenting techniques when all of a sudden you see the benefits of something that we thought was a negative before. Do you know that the majority of Brain Surgeons are Gamers? and that they spend their lunch hours playing video games?

I mentioned last week about Connor's mind being so much sharper then it used to be and just today he went to play a Memory Game he had played three months ago on the computer for his reading lessons and when he logged in today he had memorized it and opened 30 cards never missing a pair! CRAZY!

Alexander also had a good day at school and he was a lot more focused then last week. I hope this means we are moving back into a normal routine and that everything will calm down even more.

Tomorrow Connor will have all three Therapies again, PT, OT and ST and then on Thursday we are heading to Denver for a full day of infusions. He will start with Solumedrol, Methrotrexate and finish with eight hours of IVIG.

I hope you all had a wonderful and peaceful Easter Weekend and if you have followed my messages about Henry then please know that he is back home with his family and that he is recovering. It is not sure if he is ready to get his next Chemo treatment just yet but we are so so so happy for them. Nothing makes my day more then getting great news from people we care so much about.

I also attached a picture of the Morgan's who are truly a part of our family. My Mom, Connor and I went to see them this last Saturday to bring a Easter Basket and when we arrived, there was this beautiful Birthday Banner and most delicious Chocolate Birthday Cake waiting for us. To feel this much love is really hard to put into words!

Hugs,

R (Ron) A (Anke) C (Connor) A (Alexander) ... R A C A :)

Day 16 at Home ... HAPPY BIRTHDAY & EASTER!

First off we hope all of you had a wonderful Easter and if you do not celebrate Easter then we hope you had a fun and relaxing weekend :)

We had a most enchanting day today. It was not our traditional Easter of Birthday Party that we were used to from the past but it was very lovely and precious for all of us.

Last night us 'grown-ups' stayed busy decorating the house with balloons and trying to find good hiding spaces for their Birthday Gifts. I tried to stay away from the oven as I remember well what can happen when you use this space and then someone turns on the oven without looking into it first :) So this year one of the places I used was the wash machine since I figured that would be one item we would not use today - ha ha.

We all got up early and as I said before, it was different but wonderful. Both Connor and Alexander stayed busy all day playing with their new PS3 and we been eating ourselves crazy starting out with pancakes, Fresh Strawberries on Biscuit and whipping cream, Pizza and Ice Cream Cake. My Wii Fit will be calling me tomorrow!

How can I ever put into words how everything that has happened in my life falls short to the day our boys were born? Granted we did not meet them until they were six months old and we will never know what time they were born or what the circumstances were surrounding their birth BUT I will always be so ultimately grateful to their Birth-Mom for giving the ultimate gift to us. I am grateful to the Russian Hospital who took care of our boys for the first four months of their life since they were born premature at week 33, weighing in at just 3.2 lbs at birth. Then our gratitude will always be with the Staff at Baby Home # 2 in Khabarovsk, Russia, where we met the most loving and caring women. This Baby Home was filled with love and it is due to those women that we were handed over the most beautiful Baby Boys.

This day five years ago we sat in our two bedroom apartment in Khab, celebrating with our boys their first Birthday Party with another couple that was adopting brothers as well. We had cake and balloons and as a gifts the boys received Russian Flags and Flags from the town of Khab. Our dream still is to go back when the boys will be 10 years of age and be able to really soak in the beauty of the area and the population of Khab.

So, maybe today was not the traditional super busy Birthday Party the boys were used to for the last four years but it was eerily close to the first Birthday Party. Small but happy!!!

Love,

R A C A

Day 15 at Home .. In Memory

Tonight I will try to keep it short and sweet.

Five years ago we were staying at the Markul Apartments in Khabarovsk, Russia, waiting for the 10 days to be up that we were required to stay after the court hearing. We new we were heading for Moscow on April 8 and then landing in LAX April 10 or 11. We loved spending time in Russia with our brand new additions to our family, Connor and Alexander, but we were anxious to make it home as fast as possible because Ron's Mom and my beautiful Mother In-Law, Connie, was not doing well and we were told she had only a few more days to go.

As it happened our dream of her meeting our boys did not come true as we got a call this day, April 3, 2005 .. five years ago that she has passed away. Here we were at a point in our life's making the happiest memories thousand of miles away while faced with the heartbreak of loosing a woman that was exceptional, loving, caring, funny and smart.

I so hope she is able to see us and the boys from Heaven and how I wish she was here now to give me the wisdom I knew she has. She was a devout Catholic, never doubting and always trusting in the Pope who she loved. So we all thought as a family what a coincidence that he would pass away just one day prior to her ...

We Love and Miss You so much!

Hugs,

R A C A

Day 13 & 14 ... April Fools Day .. and what is Easter? :)

So we had a couple of crazy days here at the Smith Family Home. One of them was me slamming my hand in between the Door and Door Jam so I did not feel up to typing until today again :)

Well those of you that are friends with my husband on FB know now that he had you all worried more then normal when you read his post yesterday. I for one did not know about the post until I received e-mails and phone messages all morning. I was a bit confused (hence I can excuse myself on my blond hair) and I was unable to answer anything due to Connor's schedule being packed with Therapy.

So by now most of you know we DO NOT have to sell our house asap and move right away to pay for medical bills. It was an April Fools Joke .....

We did however get a letter from The Children's Hospital that showed us the bill they send to United Health Care and it is after 'only' $197,803.77 for a 31 day stay. Wonder when we will see the one from Children's Memorial in Chicago ....

You know by now that I will be on everyone's case in December about being wise when renewing your insurance and reviewing the plan you have in place for your family. I will be the one that will push you to pay for the best plan you can possibly afford! It is such a cliche saying this but so so true .... 'if it can happen to us it can so easily happen to you' ... life can change in a heartbeat and I would rather be safe on other things then cutting down on the premium for insurance! So you will have my voice in your ears when the end of the year is near :)

On the Home Front it seems Connor has an internal clock and it is not working in our favor when it comes to us trying to sleep in. This morning at 7 AM sharp there was his little voice saying 'we need to get up because I need my 7 AM meds' ... oh how can I explain how responsible my 5 year old had become? he reminds us in time for each of his medication schedules, at 7 AM, at 8 AM, at 9 AM, then again at 7 PM and 8 PM.

Today was Connor's Solumedrol and Methrotrexate infusion again and everything went wonderful! Sharon, Connors nurse has been precious and we are very happy at this point how attentive Prospect In Home Care has turned out to be. What a huge relieve this is considering what the first week felt like. I think it proves how frayed all of our nerves were and how everyone had to learn how to work together and how things can change when everyone is willing to make an effort.

Tonight we all ventured out for Dinner, since it is 'Good Friday' and even thought we are not Catholic we still have the tradition to eat fish. We found a place in Woodland Park that had a 'Fish Fry' and it was a lot of fun. Connor really begged to go and he tried so hard to hold on but of course tired quickly so we did not have a long leisurely dinner but a fun one :)

I am keeping my best news for last once again and this would be the phone call we got from Dr. Soep. Connor's blood levels are looking great, with a CBK even below 'normal' at 27!!!! This is wonderful news as we are now tapering back next week from two Solumedrol infusions to just one!!! Connor is scheduled to go to TCH next Thursday at 8:30 AM now to get his second dose of IVIG, plus his one infusion of Solumedrol and Methrotrexate. We are so thrilled about this and we felt every reason to celebrate tonight for one huge step in the right direction :)

Connor also has a new date set for his check-up to see Dr. Curran at CMH in Chicago. It is now on April 21st at 4 PM. Ron will be back to flying by then so the plan for now is me taking Connor while my Parents stay home watching Alexander.

Another happily repeated 'Thank You' to our lovely friends the Morgan's! I get weekly letters from Rev. Morgan that are always so uplifting and encouraging. I so cherish those letters and will always keep them close at hand.

As you all know by now my mind can change from one moment to the next and as I had planned so well to skip Easter this year and just focus on a quiet Birthday for our boys here at home this of course was not to be :) This morning we set our eyes on painting some eggs, then I decided to ask my patient husband to go to the attic and get all our Easter decorations out, followed by our lovely nurse Sharon who shows up with a Birthday Bag for Connor & Alexander that included Easter crafts and more eggs to paint ... THANK YOU Sharon for being so thoughtful! the boys loved it and we now have 30 + eggs painted!!!

Now my house is decked out in partly Christmas decorations, some Easter and by Saturday night hopefully Birthday Balloons.

Once again what a difference a year makes. Last year we had a Party at the Zoo and now we are just laying low at home and really loving it. The Boys easily agreed to have a fun party for everyone this summer so it is not forgotten just pushed back :)

Wishing You all a peaceful weekend.

Love,

R A C A