IVIG # 18 and some great news :)

Can you believe it has been 18 times now, not for Infusions overall as we had many more of those, but for the IVIG Infusions? Time sure flies and we had some great news all around yesterday during our eight hour stay at 'The Children's Hospital (TCH)' in Aurora.

We arrived at TCH bright and early at 8:15 am after leaving the house by 5:30 am. The drive is always nice and easy until we get to 225 in Denver. That road is more a parking lot and stop and go then any other road we have to take on our trips to TCH. I admit I was very amused to see a construction site with a worker holding up a sign for us to drive slow when we were moving 5 mph to 10 mph the most. I was wondering if they would prefer us just going into reverse? - haha
THC Staff was as always efficient and great. Connor was very nervous having a new Nurse and no more 'Amy' but there was no reason to worry. She was wonderful and very attentive. She even called Radiology to find out how long the Bone Density Scan would take after Connor asked her. This was not part of her job but she really went out of her way to make Connor comfortable and less anxious. No issues at all with the Port and the labs were taken with no problems as well as setting up his three infusions.
Miss Patty was there at hand to have two sessions of Arts and Crafts with the boys who got to color in their room but also during group sessions. They were happy to play with shaving cream again as well :) The time went by fast as in between coloring we watched Harry Potter and Scooby Doo and ate lunch.
Dr. Soep came by a bit after 1 pm and was very happy with the blood test results. Connor is very stable and only a couple of numbers were a bit high. So the wonderful news were we get to cut back again on the Prednisone! From 0.75 ml a day to 0.5 ml a day!!!
The other change came from Connor, who asked Dr. Soep if he was still anemic. She said 'No', so Connor pushed and asked if he could please stop taking the yucky Iron Supplement. Dr. Soep told him that she will make a deal with him ... he can stop for now and if his next blood readings are still good and he is not anemic again then he is off them for good, but if he is then he has to get back on them ... HOWEVER, she said the good news is she will then give him a prescription for swalloble pills and no more liquid.
Oh you should have seen Connor's face, he was smiling from ear to ear and I told him he can be very proud because he took initiative and asked her instead of not saying anything. I told him I was so proud of him because nothing will happen if you don't ask and even if you don't get the answer you like at least you tried and you got an explanation as to why not.
So less Steroids again and no more yucky Iron. A big success all around. Dr. Soep also told me that we should talk in about four weeks as to how Connor is doing and if he is doing well that we should consider pushing back the next IVIG Infusion from six weeks to eight weeks. This is heavenly news for me! plus I am sure our Insurance will be very pleased at $10,000.00 per Infusion ;)

After seeing Dr. Soep we left for Radiology and Connor did very well. We will not get the results until later this week or early next week but we are of course very hopeful. Everything has been going so well that I can not picture this test coming back negative. Now we will get one more prescription filled for the Hippo Therapy. Dr. Soep agreed that he can benefit from more Therapy to strengthen his core muscles and balance.

Our drive home was pretty easy with the boys falling asleep within 10 minutes of being in the car.
I only had one complain on the drive home but then that is a pet peeve of mine so what can I say :) Tell me, how is it okay to drive 65 miles an hour on a 60 miles an hour zone behind a car that decides to slam on his breaks because he sees a Police Car sitting on the side of the road with a Laser Gun? This driver had us all slow down to 45 mph to then speed up like crazy as soon as we were over the hill and the cop was out of sight. I really think those are the people that should be pulled over for upsetting traffic and being just purely annoying to me - haha.

Thank You today to Kim M. who was wonderful 'company' to me all day yesterday via txting. Her son was in Surgery yesterday so we kept talking to each other with updates all day long. Glad all went well for Grant and that he is feeling well today!!!

Hugs,

R A C A

Funny tidbits from our Life ;)

Today I thought I see if I can add a smile to your life by letting you read some of what happens in our daily life.

This evening Connor just took his pm medications and when one pill did not go down as easy as the others he went and drank more water to help it along. Afterwards he asked me what a 'Heart-attack' is and I said it is something like the heart not feeling well and then it stops working right. He looked me dead in the eye and said 'Well Mommy, I just had one' ;)

Yesterday I was cooking Corn on the Cob, from my Farmers Market adventure, along with some baked organic chicken breasts for Dinner. I was so proud about cooking something more healthy as there were no starches added in the form of Rice, Potatoes and Noodles. Well, we all sat down and I put one corn on each plate. Just then it hit me what I had done. I have one son who has NO front bottom or upper teeth, I have another son with no bottom teeth and two very, very wiggly front teeth and I have a husband who can only use one arm. I guess two things needed to eat corn on the cob would be preferably teeth and two arms! I however am blessed to have three men in my home that are not easily shaken and they all figured out how then can gum away on the corn. I admit afterwards I was hoping Alexanders front teeth would finally come out but no luck just yet ;)

This past Friday I had to go in town to pick up some prescriptions for Ron and since it is summer I figured it is time for me to pull out my dresses again and wear them instead of my Jeans & T-Shirt look. Connor and Alexander LOVE when I put on a dress and they will follow me all over the house saying how beautiful and gorgeous I am. So when it was time for me to go they said I should not leave the house dressed like this because they don't want another man to see me and take me away. I told them this was not going to happen so they can relax. They did not let go on the subject and were convinced I needed to make sure no one would take me in their car to marry me or follow me home. Oh my precious, precious boys!!!
They did however settle down that night and said I should wear all my dresses all the time including me wearing my Wedding Dress to the Farmers Market next week. I can promise you you will NOT see me in my Wedding Dress next Friday ;)

Today we had a long conversation on what they boys wanted to do for their weddings. Alexander said he wants to go with his wife on a Disney Cruise and when they get to the Island he will throw her off the Boat into the Water. Good luck in finding a wife for him - haha. Connor said he wants his Wedding at a house with a pool and after the ceremony everyone will have a food fight and then jump in the pool with their clothes on. Well, his future wife better is a good sport - haha ;)

I know I could keep writing but those are just some moments that stuck with me tonight :)

Ron had Therapy again today and it went a bit better then last time due to him being able to take a pain pill prior. He is still managing on a pain scale of 6 and 7 at times and it would be nice to get the pain lower.

Now we are gearing up for an early night to bed as we have a 5:30 am departure for Denver's Children Hospital. Connor is getting his IVIG infusions there again this time plus the Bone Density Test will be performed tomorrow. Wish us luck that his Bones have improved!!!

Hugs,

R A C A

Daily Life at the Smith Home :)

So we are now 9 days away from Ron's surgery and he is holding up very well. He is of course still uncomfortable and in pain but he has found a good rhythm on going about his days.
He had one very rough day on Friday as he had his first Therapy Evaluation at 8:30 am and we thought we combine the trip in town with a visit to the Farmers Market. We first thought we would have breakfast in town but figured it be more comfortable to head home and eat. Well, about half way through breakfast Ron said he needed to lay down and he must have been asleep within a minute of hitting his pillow. The boys and I did not see him again until a quarter past 1 pm when he woke up. I told him I was going to take a nap now and when I got back up at 2:30 I once again found him asleep in bed. This went on for most of the day and I am guessing it just wore him out to walk and the Therapy in the am.

So today he figured he wants to start building up his stamina again and we took a wonderful and fun hike around our Mountain. I did not bring a camera this time but there were so many picture perfect moments of the boys running around the grass and the rock formations with their girls, Apple and Tasha, right at their sides. We ended the hike with some splashing in the sprinklers and me laying in the hammock. Perfect Sunday afternoon!

Now our boys have become very domesticated this past week. We had a little discussion past Thursday as in how much work they have to do each day in picking up their toys and how 'little' work I had in regards to cleaning and cooking. So I asked them if they wanted to trade jobs and they both agreed in a heartbeat. So most of Thursday afternoon they spend dusting, vacuuming and mopping. They then helped prepare dinner as well. Everything they said they enjoyed doing BUT the vacuuming. To hard according to my dumplings :)
Today, Connor prepared a fruit salad so you know what we will be eating for Coffee and Cake today ;)

Yesterday the boys and I also got to enjoy the Donkey Derby Days in Cripple Creek which was a lot of fun. We met Shelly, Clare and Alexander and we had an exciting afternoon. The boys participated in the Donkey Calling Contest and were a bit sad to not win the price but they were shinning stars in front of the stage :) My one suggestion to the people running the Beer Tent would be a trip to Munich. While Clare and I craved a cold beer we were not tempted enough to stand in a line of about 60 people. I think we Germans could teach them a bit or two about how to efficiently serve beer to a large crowd - haha
Never less we did not give up on the cold beer but decided to all head to our house and have it there. I do serve up a nice beer and even deliver it in an original German Beer Stein. The kids loved playing outside while we 'grownups' had some fun time coming up with our bucket lists of what we all would love to do in our life time. FUN.

I also loved following all weekend the CureJM Conference, happening thanks to Facebook. How proud I am to say we are a part of such an amazing group. There were so many CureJM Mom and Dad runners in the Rock and Roll Marathon in Seattle and a wonderful support on the sidelines rooting for them that they were even mentioned in the Seattle News Paper. There was over $188,000.00 raised for that event and it brought us all very close to the goal of $200,000. So should anyone read this and feel the need to donate please feel free :)
One Mom Marathon Runner, Erica, had the names of JM Children written in Permanent Marker all over her legs and arms. Connor was so thrilled to see his name on her leg. What a great way to bring attention and to honor all those precious kids.

So I am leaving you with a assortment of pictures from the last couple of days.

Love,

R A C A

See You Later Sam & RW!

Today we had to say 'Good Bye' to Sam and RW as they were heading off the mountain towards Denver a Day earlier then planned due to RW feeling pretty badly. The hope is that it was mostly high altitude related so he would start feeling better once getting to a lower altitude.
Sam made a point of us not saying 'Good Bye' but instead saying 'See You later' or 'See You Soon'. I prefer that as well as it leaves the door open for us to see each other again.

What a treasure it was having them both here. Our boys just adore them and they will cherish the memories from this trip and past visits of making meatballs with Auntie Sam and playing and reading with Uncle Ron.

Tonight my post will be a question to some of you and something I hope to think about. RW was given 6 months to live with no treatments or 1 1/2 years to 2 years with treatment. He has Stage 4 Lung Cancer in both Lungs that also caused a huge tumor in his hip. He has undergone intense Radiation and Chemo Therapy and it has been a painful journey.
I asked myself many times if I would prefer a fast and sudden death or have a timeline given for my passing ...
Before we had kids I would have picket the fast and sudden death given a choice but now that I have kids I admit I would prefer a timeline. I figure when given a time you have a chance to get your papers in order, prepare some memories for your children (Videos & Letters) and then try and work on your Bucket List. This brings me to another crossroad. Having kids your job is to fight to the bitter end and try to hold on but if I had no kids would I go and pick the 6 months and live it as full as I could before the pain set in or would I choose the painful treatments knowing that I might still be not getting past 1 1/2 years or 2 year mark?

Now being the family member I know I would say to everyone I love, and would not want to loose, that of course they have to fight with all their might. To not give in and always hope for the tide to turn and maybe a miracle to happen.

This is why I cherish the fight RW is fighting and the strength Sam is trying to hold onto helping him along as best as she can.
Seeing RW for the first time since he started treatments it did take us back seeing him at first, for exactly 3 minutes. He looked much skinnier, had lost all his hair and was very tired the whole time here BUT the most important part for us to see was that he was still there!!! His eyes were the same and he still joked and was the RW we know and love.
So this is what the last four days taught me. If you have some family member in your life battling cancer or another disease that has no cure then PLEASE reach out and see them and spend time with them. The disease might be horrible but the person you love is still there and the spirit can not be taken away. So instead of choosing time away from them, choose spending time with them! This is not at all about us or you but about showing they matter an they are a priority in our life! When you see them don't act like the Cancer is this big Elephant in the room that no one wants to talk about ... no by talking about it you take it's power away.
Our life's are all very busy and many might rather go on a vacation then visit a sick relative but trust me you will regret missing this time. Vacations come and go but time spend with those you love is on a timeline and the time might run out faster then you think.

THANK YOU Sam & RW for spending time with us and we are counting on seeing you again come August or September.

Love,

R A C A

Ron's Surgery up-date ...

Thank You to so many of you that have asked how Ron was doing and I thought it was time to send out a new up-date.

Ron had a post op visit on Monday and there we learned that the surgery was more intensive then anticipated. Yes, they did take care of the initial problem of removing inflamed muscle tissue and lots of scar tissue around the Rotators Cuff but the Surgeon also saw that Ron's Bicep Muscles was so frayed and inflamed that he had to cut it, remove the frayed section and then reattached it. The result is that Ron is not allowed to move or use his arm at all for three weeks, and for the following three weeks there after he will not be allowed to reach, stretch or pull with his arm. Total recovery time is estimated at 9 to 12 months. These are just the facts but reality is that Ron is in a lot of pain and discomfort. He is on a strict schedule of pain medications every 4 hours and has to ice his shoulder in 20 minutes intervals.

Here is a medical description of what Ron has:


Biceps tenodesis. In some cases, the damaged section of the biceps is removed, and the remaining tendon is reattached to the upper arm bone (humerus). This procedure is called a biceps tenodesis. Removing the painful part of the biceps usually resolves symptoms and restores normal function.
Depending on your situation, your surgeon may choose to do this procedure arthroscopically or through an open incision.

Sam and RW are still here for their visit and RW has also been a concern for the last few days. As a cancer patient his immune system is of course very compromised and he has been complaining about a sore throat. You know from my writings about Connor how even a simple sore throat can be a major problem. There is also some concern about the altitude we live at since he is also experimenting severe headaches. Sam tried to convince him to go and see a Doctor but he is not ready to see one just yet. In a sense it is understandable as I am sure he is tired of seeing doctors but I also feel for Sam because I know how worried I get when Connor gets sick.

So the last few days have been busy but also in a strange way very out of sync for all of us. We all are feeling tired and are taking daily naps, with the interruptions of phone calls of course :) it is wonderful to be around people we love and I am asking you tonight to keep Ron and RW in your thoughts for a speedy recovery for both. I wish we could dream for remission for RW but sadly that is not in our reach. So we cherish our time with each other as much as we can.

The CureJM Conference is coming up on the 23rd to the 25th in Seattle and as you might know we had planned to attend. I kept the door open on our travel plans until I knew better what the surgery entailed and what the outcome would be. Now as much as I wished to be there and hear the top three doctors talk (Dr. Pachman, Dr. Rider & Dr. Reed) about the progress made in the Research Department and meeting fellow J(D)M Families, it is not important enough to be there knowing in how much pain my husband is in.
Life as always is about priorities and if we learned one thing then FAMILY & FRIENDS are it.

Wishing you all a great start into Summer!

Hugs,

R A C A

Shoulder Surgery & the arrival of Sam & RW

I have a lot to catch up on on my Blog, including our trip to CA, but today was all about my wonderful husband Ron and later on about having family time with his sister and her husband.

Ron went into his third shoulder surgery today and I can not tell you how much we hope that this one will do the trick and relieve him of the constant pain he has been dealing with now for years. The boys and I got Ron to the Surgery Center at noon and he went into surgery at 1 pm. While he was in surgery the boys and I went to Walgreens to fill his prescription and also catch some lunch. We got back to the Center and around 3:30 pm we got to talk to Dr. Weinstein about the surgery. He said it went well and that he hopes they took care of the problem. Ron had a lot of muscle inflammation and his bicep muscles was frayed and attached to his shoulder bone. Seeing all the inflammation it was clear why he was in pain and they hope they scrapped out most of it. The good news was that his rotators cuff was not impacted this time.
The boys and I went back into the waiting room and we were told by Ron's attending nurse around 4 pm that he was making progress waking up and was requesting a cup of coffee. Funny how things have changed from years back were all you got was ice cubes, water, sprite, crackers or Popsicles ;) now you can eat what your heart desires when you get out of surgery - haha
We finally got to see Ron in the discharge room at 4:40 pm and we were on our way home by 5:10 pm.

At home we were greeted by Sam and RW who arrived for a visit. How can I put in words how wonderful it was to hug them and have them here with us! RW, as you might remember is fighting a courageous battle against Lung Cancer. He was given 6 months to live without treatment and he has fought back and is now about 8 months into it. If you know Cancer you know how horrific the battle can be. We love him so very much and it is heaven to have them here now.

We had a pleasant dinner and of course we made an early night of it. Ron is still pretty drugged up but uncomfortable of course, RW requires more rest as well. The boys were tired from our early get up to the Farmers Market this morning to supple us with lots of fresh fruits and veggies for the coming days. I had to skip my Bronchitis medication today so I would not be to sluggish today so my lungs are rebelling again.

So lights out for us.

Love and Hugs to all of you who have been thinking of us today. As always I realize over and over again that we have the most amazing Family and Friends!!

R A C A

OT Evaluation and Bike Rodeo

Yesterday when the boys and I got back home from the Bike Rodeo in WP Ron  told me that Connor needed an OT Evaluation done the next day. We had the option of 8 am or 11 am and since it takes us 1 hour 15 min to get to the Therapy Center we took the 11 am gladly :)

I admit my mind was split about what I wanted the outcome to be for this Evaluation. As much as we love Hippo Therapy and the credit I give to Hippo Therapy and Amanda for getting Connor better, I was also hoping that Connor would pass the Evaluation so I could close one more chapter on JDM and the long weekly drive to Hippo Therapy. It would have freed up one more day and of course saved us some more mileage and gas money on my car.

Well, as I said from the very beginning of this Blog. We will do whatever it takes to get Connor back to 100% and that is exactly what we will keep doing :)

Amanda did a very throughout Evaluation that involved strength, endurance, Fine Motor Skills and Left, Right, Hand and Feet Coordination. Most of the exercises were timed in seconds and in the end Amanda told me in what age he fell as in the things he was able to do. It started really well in regards to Fine Motor Skills were he was actually rated at age 10 to 11! He then had a few skills that were around his age but he scored very low (age 5) for his core body strength and his Body Coordination. To explain it a bit more blunt he was unable to dribble a ball, catch a ball (Tennis Ball), do jumping Jacks or jump and switch his right and left arm opposite to his legs. He also could not do a sit-up by himself. He could when Amanda help his legs. She told me that was due to the superficial stomach muscles being strong BUT not his inner and core stomach muscles. On the other hand he did very well in his push-ups and laying like Superman (laying in your stomach and raising your arms and legs), Amanda started counting to see how long he could hold this position but we quit counting around 40 :)

So, I actually was not the only one surprised at this because Amanda told me that she went into this Evaluation thinking he would ace it as well. We both know he made tremendous progress through this last year (from not walking to walking and running :) and the good news is that this Evaluation opened both our eyes to what needs to be the main focus from here on. 

Something that struck me the most however was the fact that I am pretty sure if Alexander had taken this test he would have scored just like Connor. I always joke that our boys are no born Athletes but this showed me why this is not their strength. In reverse the Fine Motor Skill Test had Connor trace, write and copy pictures of forms put in front of him and this is where we was rated at age 10 to 11. This I can say honestly did not surprise me because there is no doubt that Connor and Alexander have an eye for details and a very artistic streak :)

So, as you see it was good news that we found out what the focus will be for the next year and the sad news is that I wanted to put Therapy behind us when we are really not in a position for it yet. So 'patience' is the word for me again. Something I am not always the best at - haha

We did have a really fun outing yesterday however. The City of Woodland Park put up a Bike Rodeo for kids to practice their Bicycle Riding Skills and also learn how to ride in traffic. Connor and Alexander did wonderful considering they have only been on a bicycle for less then a year. If you know our Home you know we do not have a great setup to ride Bikes. The only area the boys get to practice so far has been on the little concrete pad next to our house were we used to park our travel trailer. The boys loved the Bike Rodeo and I loved seeing some of my favorite Colorado Mommies/Friends there :)

For myself I found a new hobby but I am not sure if it is a good thing or not. I started about a week ago to organize my pictures and of course started out from the beginning. Well, I have been in a kind of sad mood ever since I reached the stage of Niki when she was in her teens and when the boys arrived. I made it now all the way up to 2007 but I have to say it is hard to look at some of the pictures and looking back at how precious this time was. One of the great finds for me started in April 2006 when by pure chance I met another Twin Mom, Heidi, at the North East Mall Toddler Playground. She was just about to leave when I arrived and of course seeing she had twin boys as well we started talking. It turned out her boys, Dylan & Ryan, were just three months older then mine and on top of that we were both 'retired' Flight Attendants. She used to fly for Delta and I for AA. We instantly connected but so did our boys. Move forward a couple of weeks and Heidi e-mailed me about a Multiples Club in Keller and if I would try it out with her. So the two of us went and that first time there we met another first time Twin Mom, Sonya. Turns out she had twin girls just three months younger then mine. To me it seemed like the stars were aligned because all of a sudden I had two Mommy friends who were just amazing. They are both smart, funny, beautiful and the kind of friends one can only dream of having. The true magic came when all our kids came together and 'clicked' but on top of that all our husbands got along as well. Now that is a dream team. How many times do you meet people where the wife's like each other, the kids get along and the husbands as well? You think this would only happen once in a life time but crazy me hit the Jackpot again when we moved to Colorado and I met Allison and Caroline. Once again great kids and the husbands like each other as well.

I am getting sidetracked because there is a reason for this post :) As I said, Heidi, Sonya and I met in April of 2006 and to me we are all now much more  then friends. To me they are all family. I love them all and my life and my families is so much better for knowing them all!

Today is Addisyn's & Kerenza's 7th Birthday and I wish I could just write a whole blog about them :) Both girls are so wonderful. They are cute as buttons and they are so smart it just puts me in awe. From the six of our kids they were the first walking free of a Stroller and sitting still at our weekly Starbucks meetings. They were the first talking and potty trained. I know my boys think that they really must be a year older not three months younger - haha.

We are so proud of them and I for one can not wait to see them grow up :)

So Happy Birthday Addie & Ren. 

We love You!

R A C A

A get Free Card for Family & Friends :) NOT JDM related ....

Our Day at Home today was very successful as in getting some work around the house done. The boys did an amazing job cleaning up their room and the living room. They earned themselves an Orange Cream Popsicle and some playtime on the iPad. I earned back some Tickets from the boys who in turn each paid 30 Tickets for that precious iPad time. So all in all a great deal for me :)
I got some Laundry done and with the help of Alexander even a Garbage run on the 4Wheeler. My dumplings really are growing up as Alexander went and drove the 4Wheeler back up the hill pulling the Trailer. Before you gasp, 'yes' I was sitting behind him and helped with the steering. He was in complete control of the speed but I had my hand on the brake. I did not have to use the break at all however and he drove very careful and watched after the girls who were running next to us.
After all that I had the joy to work on our Bills and Reconcile Bank Statements. Joy oh Joy :)

This is what reminded me however of a message I wanted to send to our Family and close Friends. So you are getting it in a blog post now but you are getting it :)

If you remember we never had a Birthday party for the boys last year since Connor had just gotten out of the Hospital and we did not feel like planning a Party. Well, the year went on and Ron and I had many discussions how we went of track when it came to a focus on Materialistic things. One of them was gift givings and the fact that Birthday Parties were getting bigger and bigger. For one we both grew up with the classic approach that for your Birthday you should be surrounded by family, have a nice Dinner and enjoy each others company. Now this year we told the boys that we will celebrate their Birthday with their immediate family (Oma, Opa, Papa & Mama). We had coffee and cake, went to the movies and had Dinner. It was nice and relaxing and did not break the bank.
I think his is how I would like to see us as a family approach all the Birthdays and Holidays from now on.
For our friends I am telling you now it would be great to skype on Birthdays and Christmas and maybe have the kids color pictures or arts and crafts they made and possibly mail photos of the memories we made with each other throughout the year. Please do not go through the expense anymore of buying Gifts for either Birthdays or Christmas! Trust me when I tell you all four of us have enough 'toys' and do not need anymore. We get more pleasure out of it if you give money to a cause that matters to you, go to dinner with the money you would spend on us, or even better use the money to pay of a bill or buy something you have a need of.
My fellow twin mom's probably understand that to buy gifts for twins you are out each time over $50, just by spending $25 per child (if you can find something for $25!!!), then add the wrapping and Cards and shipping.....
I admit I am once again being honest that it would help us as well to get away from the amount of money spend for Gifts. We all have families we are buying for already and my question sometimes is when is a day I am not shopping for someone? Please know this is not me trying to be cheap but this is me trying to make a new budget work. I always loved the joy of giving and there will still be the time when I see something that reminds me of someone and I will buy it. My husband is even better at that one as he always finds gifts and trinkets when on the road. This however takes the immediate pressure off on buying something for specific days in the year.

So here is your get Free Card! Do not buy anything for us anymore and also please do not feel left out if we are not having a Party anymore. This releases you from feeling that you might have to invite us! None of this makes the Friendships we have, or our kids have, any less. I do not want my kids to grow up remembering people by what toys they gave ... and truth be told, I want them to remember people by spending time with them!
So your true Gift to us will be your time :)

Thank You!

Love,

R A C A

Dreamnight at the Cheyenne Mountain Zoo, June 2011

Have I told you before how much I love the Cheyenne Mountain Zoo? Well, I LOVE THAT ZOO!!!

It is a privately run Zoo that has true heart and love for the Animals they care for and in an extraordinary way their focus is on making Children happy AND educate them along the way. We as a family have fallen in love with this Zoo since we moved to Colorado 4 years ago. The boys had their 5 year Birthday Party there (Lion Themed) and they went to Zoo school there for a week one year. We had the pleasure to be part of the birth of a Giraffe Baby through Video and we have cried when one of our favorite Giraffes died. We were super excited when we received an exclusive invitation for a private Event called a Grizzly Bear Dreamnight while being at the Infusion Center last month. This was a special invitation event for Children with Serious Illnesses and Diseases and the beauty was that only immediate Family members could accompany the child. It was noted in bold letters on the invitation that most of the children present have compromised immune systems so to please stay away if anyone in the family has been exposed to any contagious disease, cold, flu etc etc.
It is absolutely true that my boys have been looking forward to this Event for weeks. For them to be around children who are sick as well but also to not worry about being exposed to anything contagious is a gift.
There were some sad news this morning when I told the boys that Elson the Male Lion died yesterday. Of course the boys were very sad and they went and made beautiful Cards for the Zoo with Pictures honoring Elson.
The Event started at 5:30 pm tonight and of course is was amazing. We stayed until 8 pm and in between that time we got to see Animals alert and awake. The Tiger was jumping, running and swimming in his pond. The Grizzly Bears we got to see from 4 feet away being fed and trained. This is not some training for them to do tricks but to teach them how to move so they can be weight once a month and how to position them for easy access when they need shots and medical attention. The wolfs were out and howling, a big Tortoise Turtle was actually not so much walking but running through the Zoo :) There was free face painting, free Pony Rides, free Carousel Rides and Science tables. I have never seen so many wheel chairs in one place and of course at closer look you saw how many kids were very sick but also as Connor and Alexander pointed out there were many kids who looked just like them from the outside. See, that is where I think kids like Connor suffer mentally the most from. He looks 'normal' but he knows he can not do all the things healthy kids can do. There is always some limitation or the possibility of a serious complication to his health. Exposure as I wrote in my blog before is always a chance we take. So, while many say he acts and looks great please remember this is a child who still is on weekly Chemo Treatments, daily Cyclosporin and Prednisone (less each month Thank Goodness) and the monthly IVIG. So, tonight was a night well deserved for all those children, Connor and Alexander included. They miss out on to many things that families with healthy kids take for granted and they should have days to shine like tonight. As it was, Connor said to me that he loved that everyone there was as normal as he was .... I am actually getting tired of the label 'normal' so I have to tell him that everyone there was as unique as they are :)

So how can I ever say Thank You enough to a place like the Cheyenne Mountain Zoo, Make A Wish and Starlight for making dreams come true for Children who need them more then ever? For Children who should see more laughter and feel happiness more often then pain and frustration.

A very grateful Mom tonight to those that really 'get it'.

Hugs,

R A C A

Possible Injection Solution & at the Dentist

It has been two very busy days for us and one of the first things I like to say is a HUGE Thank You to the amazing support and help I received from my JM Mommy Friends and from my Nursing Friends.
It seems that the problem of the painful injections might be due to us getting the wrong needles in the mail and me not catching it. I was told that most are using 30 to 31 gage needles and I remember thinking that in the last few weeks the needles seemed bigger but it not really registering. So after being told to look at them, I noticed that indeed the needles I am using on Connor are now 27 gage. This could really be the whole cause for his pain and after calling Amerita they promised to overnight the smaller needles we will find out next Tuesday if that will be the magic trick needed. Never less, I will also take the suggestions about icing the area as well. Can't help to be covered on several bases. I am truly grateful at how tight knit our JM Group is, including my wonderful friends who are dealing with other Autoimmune Disease or Blood Disorders. Everyone tries to help out with thoughts and ideas. It truly shows we are a family and even thought we are all from different backgrounds, countries, religions and political believes we are bound by a common language of JM and the worry for our children and ourselves. I think it will be a bond we are forming that will last for lifetime. To root for each others kids, to cry with each other when the battle is hard or even close to loosing. Then the magic to find laughter in all of this. Precious!

Yesterday was also Connor's Dentist Appointment to have three of his teeth pulled. Connor has so far never lost a tooth on his own and I admit it saddened me that the only time he gets to meet the Tooth Fairy is through a Dentist Visit.
As with the Injection issues, we received so much love and support once again through Facebook postings, and Connor was smiling each time I told him someone had posted how proud they were of him. Now the visit did not start out as smoothly as I hoped. Connor was a bit nervous but he knew what was explained to him so he was prepared. That is we thought he was until the Dentists Assistant came in and told him that Mom and Alexander could not be with him and would have to wait in the waiting room. It took all of 3 seconds to see his demeanor fall and him starting to cry. I held him and told him how many times he has faced a scary situation in his life and how he always came out stronger in the end. We hugged and I told the assistant that I would walk him back to the room. He settled in his chair and I told him about the yummy ice cream lunch that what waiting for him and he looked at me and said 'Mommy, you can leave now because I am brave and I can do this". So out I went to be with Alexander again and I admit I felt like crying myself. Alexander of course was very upset as well so I held him for the whole duration while he was trying not to cry. The nice part was that we were allowed to txt with Connor and the Assistant would txt the Front Desk and they would read the message to us and we would post a message back to him. It was great timing as Ron was able to txt from Dallas to tell Connor how proud he was of him, and Connor txting us back that he loved us and that he was being brave.
There is always a huge weight on Connor and I when he does go to the Dentist. He has not had pleasant experiences in the past and those memories can hound you. When Connor was 2 years old he fell and chipped his front tooth. Unfortunately for him it chipped in a way that the nerve was exposed so even eating a banana was not possible. This happened 3 days prior to his Tethered Spinal Cord Surgery and that mend that the Dentist had to pull the tooth with no numbing or Anesthesia. It also had to be pulled because the Neurosurgeon said that any work trying to repair the chipped tooth could cause an infection and she can not risk doing a serious surgery on his spinal cord with that hanging over our head. So, to my shock back then, I was told as I was yesterday that I could not go back with him and that the parents have to wait in the waiting room. I tell you it was horrible to hear my son scream bloody murder and then be told it took four people to hold him down. I was sure then that this would be the last time I get him inside of a Dentist Office! Well, a couple of years later we found this wonderful place in C-Springs (Rocky Mountain Pediatric Dentistry). It was such a friendly place that Connor and Alexander actually look forward to going to get their teeth cleaned. they do well with x-rays and Connor had a cavity repaired a few months back with no issues either. I was always allowed back with the boys and that makes me think it might be a policy when it comes to pulling teeth? maybe they know I would be the one not handling it well!
The Dentist walked Connor out yesterday telling me and him how proud she was of him and what a great job he did. Each of the boys got a sugar free lollipop and Connor was wearing a tooth necklace container that was holding all three of his teeth. I would be lying if he was not feeling pain or feeling uncomfortable but he was excited about the Ice Cream and Milkshake at Gunther's 60's Diner, and seeing Elvis on the TV there was not to shabby either for my little Elvis fan's. We then headed to the movies to watch Kung Fu Panda II, which was very cute and even better because my friend Jennie and her Son Zachary joined us. You think this would be excitement enough but we then finished the night with a wonderful evening at the Olson's Family Home that brought some fun playtime for the boys and a yummy dinner of Noodles, Yogurt and Ice Cream for the kids and Brats and Salad and Veggies for us Adults. THANK YOU Jennie and Matt for giving me a night off. Did I forget to mention the yummy glass of wine that came with dinner? Trust me, I deserved and needed it - haha

So we got home a bit late but because of the excitement of the day my two boys were passed out within 5 minutes of laying down. They really thought they could stay up for the tooth fairy - haha.
This morning they were happy to see the Tooth fairy did come and brought Connor 12 shiny Quarters, a dollar per tooth.

My dream for Connor would be to loose one tooth without any impact from the outside but I was warned by the Dentist that he most likely has to have a few more pulled. None of his baby teeth are loose at all and the permanent teeth are coming and they don't seem to care if there are others in the way. According to Chicago this is a JM issue but I realize by talking to many of my non JM Mom's that their kids are dealing with those issues as well.

So I am ending this blog with a huge HUG to Addie, Connor and Alexander's wonderful friend who was a front runner this week and had a tooth pulled a day before Connor. She was very brave as well and did wonderful! We just love how amazing our kids are!!!!!

Hugs,

R A C A

Methrotrexate (Chemo) Shot's ....

This time I feel like I am writing this for the third time but in a way I am since I had great feedback from the JM Mom's Group on FB, as well as on my actual FB Wall.

Yesterday was 'Shot Day' again for Connor, his weekly Methrotrexate (Chemo) injection. We are now up to 0.8 ML and I am still debating why for the last few months we are going back and forth with having some serious problems giving the Shot.
For over a year now, Connor has been sailing through Shot Days with hardly any issues at all and then a few months back he started complaining about the Shot hurting him.
The one change that happened that is the most visible, is him loosing the Steroid weight. He is slimming down fast and other then the height issue he is about the same as Alexander again. Alexander is still taller and looks skinnier so Connor looks a bit more compact then Alexander but only because he is still almost 2 inches shorter. We used to give the injection in his tummy and then when the tummy fat went away we moved to his bottom. I can truthfully say there is no more fat cushioning at all on our little boys body and on top of this we are at a higher doses. It takes me almost 30 seconds to inject and it is the longest 30 seconds when your child is crying from pain.
I got some wonderful feedback from my CureJM Support Group and it seems that we have been lucky to be pain free for so long as it has been a battle for many children who need the Injection. I got some great advice for the pro and con to the oral version and also some more tips on what we can do to distract and numb the area better. We are using the EMLA cream and I have been adjusting the time but we will now add icing the area about 5 to 10 prior to injection as well.
The negative part about moving to oral would be the issues about absorption but also the side effects of what the Chemo Drug can to to your intestinal track. Nausea, Vomiting and Diarrhea are a possible factor to sever headaches. Connor on the other hand never had a side effect with the injection other then the pain starting recently when he is getting injected.
So Ron and I decided that at age 7 he very well should have a voice and hear about the pro and con's and make a decision for himself. After we laid it all out what could be, he looked at us with a very somber face and said he much rather have the 30 second pain then the possible side effects the oral version could cause him. Brave little man once again and while I am upset and frustrated that he has to face this pain once a week I am still realizing we are the lucky ones ... still, It could be way worse and I have to remind myself over and over again that we did not choose that battle but we are fighting it.

The rest of the day was actually wonderful and postcard perfect. The boys did really well in school and then got dressed up to play Cowboy and Indian out in the Forest and Teepee. I got to watch them laugh and play while baking a fresh Strawberry Cake from scratch. We had a fun Coffee and Cake time and the four of us truly ate 1/2 of the cake. To make up for that part the boys and I went for a little hike around our Mountain and it was amazing to watch Connor beat Alexander and I back to the Front Door :) For Dinner we BBQ some Pork Chops and ate them with a fresh Tomato Salad that included fresh Mozzarella Cheese, Basil and Balsamic Vinegar and Olive Oil. Simple but yummy.

I am hoping your week is going well!

Hugs,

R A C A