Blessed

Well today is Christmas Eve!!! The boys are still sleeping, which is amazing in itself. Thinking of Christmas and what it means... all I have to say is we are so blessed. Kyle and I have been so blessed in our lives from our kids, parents, siblings, family, friends, each other and many, many other things too. Our parents have been such a blessing to us our whole life. They have taught us how to love unconditionally, respect all people even when it is hard, give even if people don't ask, and always remember to reflect on your blessings. So many people will go without during this time of year and others will have, but will forget how blessed they are to have. I am not just talking about the material things or food, which many will go without, but the relationships. Families in turmoil over money, misunderstandings and any other thing that may pull apart a relationship. Understanding and reflecting on your blessing might open your eyes to the positive in the world, even when it seems all card are dealt against you. Find the blessing under the challenge. When I look at Brayden I see how many challenges we had, but all the blessings we have found. We have found support, love, understanding, and how blessed we are in our lives. Thank you all who have blessed our lives. I pray for all our family and friends to find what they need and have the ability to find the blessings in their lives.

Well a lot has happened since the last time I posted. Santa visited Brayden on Thanksgiving at Papa's house. He encouraged Brayden to Poop and Pee on the toilet. It was a good effort but not a completely successful mission. One day he will wake up and want undies on and the next a diaper. Trey has been encouraging Brayden to pee and poop on the toilet, because he can't stand the smell of his brother walking by him with a gross diaper on.  I keep telling Brayden that he is a toddler and toddlers need to go potty on the toilet, but he insists on calling himself a baby so he  doesn't have to.

 Over Thanksgiving Pa was sick and was stuck in his room. Brayden was told Pa is sick and can't play. He was very sad and ever since then he thinks Pa has been sick. We will be sitting at the table and he will look at me and say "Pa has a tummy ache and is sick". Poor Pa has been sick for a long time according to Brayden even though he really hasn't. He has seen him since Thanksgiving and played with him but still thinks he is sick.

Both the boys have tried to sneak a peak at their presents under the Christmas tree. I have laid down the law and told them if they open any present before Christmas the present goes back to the store. We had the Goblirsch Christmas earlier this month. When it came time to open presents, I handed Brayden his present and he walked it over to the tree and set it down.  At least I have won this year!!! He has also been studying the presents at my parents house very closely. He will lay on his tummy and stare at the presents. You can clearly see he wants to touch them but resists. Trey likes to count them. I wrapped Trey's presents up inside each other so all he thinks he is getting is two presents. He isn't sure why he has two and Brayden has more. I can't wait until he finds the rest. I will get a picture to capture that moment.

My sister was able to take the boys to the T-Wolves game. They won!!!  Lucky Boys! I think every game Trey has gone to in any sport the team he cheers for loses. At one point he told Kyle he thinks maybe he should cheer for the team he doesn't want to win. Well since that time basketball has replaced the imaginary football. At least they don't tackle each other, but it still ends in the same result. Brayden crying and Trey winning then getting in trouble. So at least my boys change sports according to the season. On another sports note, Brayden insists that I clean up the snow so he can play baseball outside in the yard.

I will leave you with this last Note...Blessings to all. Find the positive in all and you will find happiness in your life. 

Heaven is shining down...

Today was Brayden's big visit to the Mayo clinic to see his Rheumatology doctor and...
1. Our next visit will be in March
2. Blood work looks good: similar to last visit
3. Non of his joints at this time look like they have any arthritic problems
4. If he continues to do well until March with no problems- we will start adjusting Brayden's methotrexate medication to hopefully getting him off of it by summer :)
5. He is gaining weight and growing taller - about 30 lbs. and 3 ft. which is another thing they check to make sure the arthritis is not stunting growth. It is one of the markers they check at each visit.
So Needless to say TODAY IS A GOOD DAY. Heaven is shining a little light on our little man.
Thank you to all of you that continue to think, support and pray for Brayden, his doctors and our family. You all have made such a great impact on us and we can't thank you enough.  And a side note: every time they rang the bell and announced a persons name at the clinic today Brayden would yell OH OH that scared me. He is so loud. Can I hide under my chair when he does this? Second time at the Mayo. Last time he was yelling EXCUSE ME and ONE SEC PLEASE. They are going to think he is trying to hold up the place.
A update on what is going on in the world of a two year old...
He is loving baseball- don't think he got the memo that the season is over. He wakes up in the morning and wants to watch it over his cartoons. He is always wanting to play and sometimes he makes me throw him a pretend air ball then he bats it and tells me it was a homerun and proceeds to run around the kitchen table, like it is the Twins baseball field. As he is running he is screaming HOMERUN!!!HOMERUN!!! He is so little but is so loud. When something is on the TV and he doesn't like it he stands there and shuts it on and off as if it is going to magically change the channel and not shut off.

His newest and greatest discovery is the microwave. He can reach the microwave!!! He thinks its great and I think its scary. He tries to put house hold items like pens, pencils, toy cars ect. inside it. This is not good. He tries to be very very sneaky but I have busted him every single time. Lucky no fires or explosions, even though I think Trey would think it was cool. Brayden loves opening and closing that door on the microwave. Your probably thinking -they have locks for that type of thing so just put a lock on it. You have no idea what this kid can get into so there is no use putting a lock on it. I think he might be a mini locksmith. May be I can send him out on some locksmith jobs (except I think that might not go over to well with child labor law stuff). We have gone through three different types of locks on our cabinets and he can still get in. We have some on our cabinets currently, I believe its for decorations because I know they don't work or it could be just wishful thinking that they will magically work some day.

Trey lost some teeth the other night and Brayden can't wrap his brain around the fact Trey doesn't have all of his teeth. He keeps asking to see Trey's teeth and of course Trey was proud to show Brayden the first 50 times he asked but after that it was a little much. So if he asks you to see your teeth or asks if your teeth are broken you will know why.

He is totally into coloring or should I say making you color/draw what he wants on his paper. I believe he has a game plan regarding coloring and drawing. He finds a writing utensil this could be a crayon, pen, pencil, marker, paint brush then asks for a piece of paper (because he knows he can't write on anything else or he gets a timeout) yes we have some lovely drawings on our walls downstairs. When you go to hand him the paper he asks you to draw him, so you feel like OK I can draw you. But he doesn't stop and by the time he or should I say You are done coloring and drawing everyone in our family and some selected non family members we are all on skateboards wearing helmets being sassy. Yep, sassy that is how he describes what the people should look like in the picture. Not sure were that word came from but he loves it.

He also loves to play with his big brother. Trey and Brayden sometimes play "touch-down football". This is how it is played- Trey throws the air football and Brayden has to catch it and run for the touch-down as Trey is running the touch-down in at the same time and who ever makes it back to the starting point and yells touch-down wins. The problem with this game is that very frequently, Trey is making it to the starting point before Brayden even has a chance. He will cry and then the cycle continues until I have to stop the game. This game brings back memories of my cousins Rachel and Josh. They would play cowboys and would use their fingers as the guns. Rachel would shot Josh and he would have to fall on the ground. As so as he was ready to get up she would shot him again and this process would continued until he just laid there helpless and defeated by the older sibling. One would think-you know the outcome so why do you play it but I think it is just a sibling thing and most of us have that one game we did even though we knew we would win. My sister and I had servants and my boys have touch-down football.
We will see if Brayden ever gets to win at "touch-down football" but I do know both my boys have great things ahead of them!!!

Halloween

The Thursday before Halloween- Brayden had his blood work appointment. We don't find out the results until this Thursday. He did really well. He doesn't cry when he gets his blood draw done and it just amazes all the staff. This time he had to get blood out of both arms because the one we started from stopped bleeding. He didn't mind and watched them take blood.

The Friday before Halloween-Kyle, Treyton and I craved pumpkins, while Brayden painted his white one. Yes, I said white! When they went pumpkin picking he really wanted a white one. When it was time to crave it, I put it up on the table and he looked at it and said  "Beautiful" this was pre-paint. Brayden didn't like the insides of the pumpkins and would almost throw-up when he would touch it. Trey thought it was really funny Brayden didn't like the insides.

 Last night was Brayden's first Halloween experience. We did some trick or treating in the day light to some special people: Papa and grandma, Pa and Nana, and Tracy and Mike. We then headed over to the Clayton's house for the real party. The kids were all dressed up in their costumes and ready to go before the sun was even down. It is such a different scene than last year. Last year Brayden got dressed up for 2 seconds and didn't get to trick or treat. He was so sick and couldn't walk. The emotions behind how you feel to see your child so healthy compared to last year is so breath-taking it makes you cry with happiness. It might not seem like a big thing to take your kids out to treat or treat but it is. The image of your child sick and unable to walk breaks your heart and the fact that this year he gets to is so wonderful. A childhood memory gets to form and be enjoyed for years to come. This year was a completely different story from last. Brayden was so funny. At every door he would try to be the first one at the door and would yell trick or treat. We could hear him down the drive way if that tells you how loud he was! He kept right up with the big kids. When he would leave a house he would tell them peace or peace out. I think he has been hanging out with his big brother a little. He would only hold Malik or Sara's hand (our friends we went out trick or treating with). I guess Brayden was to good for his parents :) ! All the kids collected a bunch of candy and couldn't wait to trade candy. We for sure thought Brayden would be ready to crash when we got home, but he was doing laps around the table. He didn't get to have candy either so not sure what happened. Trey on the other hand couldn't wait to go to bed. This morning Brayden wanted M&Ms for breakfast and lunch and  will most likely want it for dinner too. Big thanks to the Clayton's for a wonderful time!

This Thursday will be our big day at the Mayo clinic again. We find out if Brayden's doctor appointments can get pushed back it every 6 months instead of 3 and find out his blood results. Please pray for Brayden as we continue his journey. What a Blessing we have and such a great opportunity to see our blessing through someone so small.

The Gifts In The Choices We Make

So very often it is hard to see the blessings presented to us, when all we see is the problem. I feel it is human nature to look at a situation and think 'why me' or 'why do I have to go through this'. God has a plan and in that plan he has blessings for all for us. Each one of us at some point in time have struggled up the mountain only to slip further down into the depths of the unknown. We often don't see at the time there is a reason this is happening to us. It is often more easier to think of negatively about the situation then having a positive attitude for the gift that you may be receiving. We so often take for granite the ability to change situations we don't want to be in. All we can see is darkness, but really there is a completely different path we can take that has light and support if we choose. I am writing today to let everyone know that the choices we make can really provide gifts that we might not expect.

The other day, I ran out to the mailbox to find a envelope addressed to the Parents of Brayden. It was from the Mayo Clinic. I go inside and open it up to find one of the most wonderful gifts from a choice Kyle and I made. We struggled so much with who we wanted Brayden's doctor to be and to over see his progress. We prayed every day for answers to the path we should take. We were at a breaking point when the medication being prescribed for Brayden was being changed by the doctor at every visit. The path we were taking with Brayden's medication was not what we felt was best for him. At the time, we were thinking why do we have to go through this and why can't we have confidence in our son's doctor. Well my answer came the other day...As I am reading Brayden's medical record they send us from each visit, it says "I have been following him for about 7 to 8 months. At this time he is doing quite well. He has not been on steroids for several months and Interval History is basically UNREMARKABLE." For his history to be unremarkable means there has not be anything that would cause them to worry and make them think he is in a 'flare-up'. WOW that's all I could think. This is why we went through all of that. He did answer our prayers and we are so Blessed to have him guide us through all of this! We were able to see the path we should take. Listen to yourself. You are often the only one that can make the choice to change a problem or situation in your life. And because we felt that the way things were heading was not the situation we wanted to put Brayden in we made choices to change. We now have the report of UNREMARKABLE. Take action and may be your problem or situation can turn into something you may dream of.

Hopes of making a change...

Last week my family attended the Arthritis walk in Edina, Minnesota. As I sit here and reflect on the day, I thank God we are so blessed. We have such an amazing little family. The disease that Brayden has can be so harsh and devastating. He is such a trooper and really shows us what life is about. It is all the little things we may take for granted. The ability to walk, run and jump may become hard for a person surviving with arthritis but all the people at this walk were so determined and happy to have the opportunity to do this event. You could see in there eyes, the pride with every step they took. We are bless to have this opportunity for our family to see this first hand. Many parents get upset when their kids are running around or jumping off the couch. But I pray every night Brayden can wake up every day and run around the house with his brother and "jump to the sky", as he says. My hope is one day they will find a cure for all these people, so parents don't have to go to bed and wonder if their kids will wake up and be able to walk.

We might be getting one step closer. A special thing happened in the House of Representatives. They Passed The Arthritis Prevention, Control, Cure Act on Sept. 30, 2010. This will help provide more funding towards helping find a cure in research, it will help encourage more pediatric rheumatology doctors and many more things for people surviving with this disease.

Almost a Year of Reflection

Wow! It is amazing how fast time goes by. As a child, you always think it will be forever before I can drive or move out of my parents house. Then all of a sudden reality hits you right upside the head not with a stick but with a log. I never thought we would be able to get through all that we did. But with the love and support of our family, here we are able to  thank God for all the love and support. We have been so blessed in this last year for so many reasons. When we first got the news, I don't know how many prayer lists Brayden and our family ended up on. We had people from all over the US praying for Brayden. I remember talking to my grandma on the phone and she alone I think put us on 3 or more prayer chains. When she told me I cried, I can't believe how much we are so blessed to have that much love. 

Another great event took place for Brayden to help with his medical expenses. Our family and friends set up a benefit to honor Brayden. They put a lot of time and energy into helping make it a great success. We were able to make enough money to pay for Brayden's medical expenses and some of his future medications and procedures. So thank you to all of you that made this event happen and for those of you that came to support Brayden! When Kyle and I reflected on this event it still gives us tingles on how much we are blessed and the people that came out. We were so pleasantly surprised by the amount of people that donated and supported us. Words can't describe our reaction to this event.

There have been other events that have taken place to spread the word about JRA. We attended a Walk for JRA at the Mall of America. At this event we met some other families that are affected by this disease. We will be attending this year to the same event put on by North Central Arthritis Foundation. The Justin Morneau Casino Night was a blast certainly for Vicki and Kyle. It was held at the New Twins Stadium and almost all the Twins were there and some other professional athletes. Greg and I hung out, while Vicki and Kyle stalked the players for a picture. It was fun and Kyle made a new best friend...But when is Kyle not making friends with strangers. Lets just say Kyle and Delmon Young were like long lost friends!!! We were also very blessed, when we received a card in the mail by our cousins Kristi and Jeremy. Over the 4th of July they went camping with some friends and dedicated the weekend to Brayden and JRA. They sent pictures, which I will post of the weekend. Each time I read this card even to this day, it brings me to tears. What a unselfish act and the kindness we have received. It is just so unbelievable. Tomorrow, we will be in Edina walking again for JRA. Hope it doesn't rain!!!

I also have to report Brayden is now being seen at the Mayo. We did end up getting a second opinion and couldn't be happier. We love his doctor and he took him off the Kineret. He has been doing fabulous and hope this continues. His next apt. is in November, if everything goes well we get to push his apts to every 6 months instead of 3 months.

Last Two Years...

In two years so many things can change. I have had the opportunity to laugh, cry and expect the unexpected. In April 2008, my husband and I received a beautiful, healthy baby boy from heaven. We named him Brayden and he was welcomed home by big brother Treyton. When parents bring their healthy baby home from the hospital, they never expect a few years later they would be back in the hospital searching for an explanation to what is making their child sick. September 2009, started our long journey and changed our perspectives.

The signs of Braydens condition were not really recognized until September, but looking back I can tell he had something going on in the beginning of August. We had a few trips into the doctors office for unexplained pealing on his hands and feet and really red cheeks. They called it a virus and I thought maybe their was more, but blow it off. I notice the infamous rash one day in the car that came out of no where. It was hive like and covered his legs and stomach. I called the doctor right away and of course the regular doctor we saw was out and I had to take him to one of his partners. I would have rather taken him to the vet then see this doctor but I had no choice. When we got there the doctor thought it was just from something he was sensitive to, but I had my doubts he has never known what he was talking about. He told me to come back in a week if it didn't clear up. Within that week,  Treyton ended up bringing the lovely Flu home from school. Yuck!!! We got to go visit our home(s) away from home the doctors and Target. We all ended up on medication for the flu and Brayden continued to have the weird looking rash. We got over the flu, but Brayden started to develop fevers. I'm not talking the yep you have a little fever, but you will be fine. His temps were like 103 to 104 and the lowest it got was round 99. Called his doctor after hours and he told me to bring him into the ER urgent care to get his ears looked at and cough that he has now developed, since getting the flu. We load up and took a trip to cesspool of diseases being its flu season and all. They do an xray and say he is fine. Take him home and the next morning he can't walk up and down the stair and is limping. I call the doctors office crying ,because my baby who was running around and was fine can't walk correctly. They have me bring him in right away. When I get there two doctors examine him and recommend I bring him to see a pedeatric orthopedic doctor that day. They tell me if they can't get Brayden in to see a doctor that day; I need to bring him  directly to the Children's hospital ER and tell them what is going on. Kyle and I pack up Brayden and take one of the longest rides of our lives to the Children's Hospital of St.Paul. We get there and they begin blood work, take a xray of his chest, throat culture and take his temp. When all of the stuff comes back they tell us they are going to admit him do to all of his abnormal blood results and his lack of movement in his leg. At this point they thought it could be an infection in his hip bone or joint.
We spent three days four nights. Brayden was being monitored and given Tylenol around the clock for fevers. Blood test, urine culture and any other test he could get he got it.The first time Brayden was put down was for his scan on the hip joint. It was so hard to watch him as he was looking up at us with wondering eyes and then limp. We knew he was in the best place and they took really good care of him. After his scans came through and everything else was eliminated they sent in a rheumatologist. She stated they believed Brayden suffers from Systemic JRA and a clear prognosis can take awhile. They have to be 100% certain it is JRA, before they can start the medications, because the type they use alters the DNA. And that means there is no turning back to recheck, if medication is started. From that day forward we have been monitoring Brayden's blood work. We had to take him in for weekly blood draws and had to have an echo done for his heart to eliminate a disease and make sure it was no enlarged. We also had to watch him be put down again for a bone marrow biopsy to eliminate Cancer. In December of 2009, Brayden was diagnosed with Systemic Juvenile Arthritis. This was a bittersweet day...we know this is what he has but the future is unknown. To know that your baby may have many hardships physically, breaks your heart but when they smile you know everything will be ok. Brayden was prescribed three different medications...Methotrexate (Chemo drug-Cancer patient use it) shot form 1X/week, Kineret (Off-Label use for children that have systemic JRA) shot form every day and liquid alieve 2X/day. It was a very difficult choice for Kyle and I to make on whether the medications would do more harm then good.We also found out due to my request that Brayden was extremely vitamin D deficient and we started him on supplements. The blood test that where coming in were scary for the fact Brayden was severely anemic and was borderline needing a blood transfusion. Before starting this medication, I really felt we needed a second opinion, but again pushed the little voice in my head away. We decide to have him start all the medication to avoid any more damage to his little body.