Student of the Month

As many of my readers already know this is Jeremy's first year in school full time. I home schooled him up until this past September. Well today he was recognized as Student of the Month for his class! We are beyond proud of him! He has worked really hard even on days he really wanted to be at home. He misses school for doctor's appointments a lot but still loves to go back to school with a smile on his face. Today just reinforced that I made the right decision last year in deciding to let him start school. It was such a hard choice but he is truly blossoming into a wonderful young man. He was surprised today when he saw me in their gym. We had not told him he was Student of the Month so he could stay focused. Sheer joy & happiness covered his little face as they announced his name. What a moment! I so wish his dad could have been there. I know he will continue to do well & hope his dad will get to witness him receiving another award in his future. Words can't describe how I felt as he hugged me & said " Mom this is the first time I ever won a medal ever!". Tears almost fell- he is a very special young man.

Realizing HE was Student of the Month for his class

He is proof that God puts some of the greatest things in small packages <3 Love him so much !

Motivation

I have not stopped working out & getting ready for my races that are coming up soon. The first is the Seattle Color Run on Mother's Day with my youngest Jacob. We are both really excited to be doing our first 5K together. We are being joined by some good friends with their children as well. It will be a fabulous day!

My biggest race is on June 16th when six fabulous ladies & I run the PNW Spartan Sprint together. With that in mind I have been training non-stop when I have a free moment. We do all kinds of crazy training some involves monkey bars which I still can't master. Climbing a rope, running sprints up hills with 50llbs sacks on our backs. All my walks now have me wearing a 25llbs weighted vest. I therefore spend a lot of time on pinterest in the evenings after the kids go to bed. I find I need extra motivation in quotes or pictures. Therefore I pin them to my boards. Here are few new favorites to share. I hope all you have been training are enjoying keeping up your fitness goals as much as me. If you don't enjoy it then something's wrong. We girls find ourselves laughing at eachother quite often. It is  much easier to relax & enjoy the process then to hate every moment. You'll see great change happen when it becomes a habit you look forward to doing every day.

See what I mean, we do silly things while we train! These where the start of hanging sit-ups.

I get tired every day I train- But I love it!

These are just a few that I read for help when I am exhausted. Your body can do so much more then we think! Never Give Up!!

Grunt Fitness 365

Check out this great Facebook page for more inspiration through words & recipes.

Biggest Motivator so far this week- if he can accomplish his goals then why not ME!

Month of Awareness

May has always been the month of awareness for the Sturge-Weber Foundation. Sturge-Weber (SWS) is what Jeremy was born with that has consumed our lives since October 27, 2000. For those of you who may have never heard of SWS chances are you've seen someone with a Port Wine Stain (birthmark) & they may have had SWS. Not all SWS angels have visible signs but a lot like Jeremy will have a large birthmark. Jeremy has made me as a mom more patient then I ever thought possible. Patient with doctors who have no idea what to do for him in a crisis, patient with nurses who ask a hundred times what medicines he is on & why. Patient with the lab techs who have a hard time finding a vein- even though usually I am very nicely with tight lips saying no more pokes! More patient as a teacher as I learned how to teach a child whose development was delayed with every seizure that gripped his small body. It has also made me grateful.

I am grateful to be this amazing little boys mom. A boy who see's his cup as half full never half empty. A little guy who never cares if he has seen something a hundred times before it always looks new & exciting to him! He has opened my eyes up to all our blessings & not our short comings. In his eyes I am superwoman & his dad is his hero. He tolerates medical tests that most kids would scream & cry over . He takes  medicine better then most adults. He has his moments when my patience is tested to the very end then he smiles and hugs me with his little arms and I melt. I'll never know why God blessed us with Jeremy & SWS diagnosis but I can't imagine not having him our lives. 

With that said please take the time to go look at the Sturge-Weber Foundation website. Learn a little more about living with SWS. There is NO CURE only the hope of making life better for those with SWS. Research is critical as know one knows the cause of SWS. Only that it happens at 18 - 20 weeks gestation in the womb. Money is vital for the funding of that research so if you feel called to donate in Jeremy's name then please feel free.

Our main goal is for when you or anyone see another person with a PWS or having a seizure to not make them feel isolated. They are just like you & me. They want the best life possible that they can lead. Be their friend and help them if they ask for help. Jeremy may not be big in stature but his heart is as big as the ocean as he always says.

My EFMP Angel : Link to a little more background on Jeremy. Just sharing a few pictures of my guy & his new favorite video. He makes us play it on the TV all the time now because he loves Banyan. Sturge - Weber is ever changing my son's world.  We will help spread the word so maybe one day the research will help make his life better.

10 months day before his second seizures that landed us in the Colorado hospital for almost a week.

3 years old playing at the Children's museum with is favorite thing trains!

My favorite picture of Jeremy with  my dad. He loves with all his heart everyday. His hugs are the best hugs in my whole world.

Bus Rides & the Big City

Today was another first for Banyan on his journey to become a service dog for Jeremy. We decided today was the day to take a bus with Banyan from Lakewood, WA up to Seattle. It was a little over an hour ride to & from Seattle. Banyan did AMAZING! He walked right on the bus like he was suppose to be there. He fell asleep after the first ten minutes on the way to Seattle.

He laid down right at my feet and kept them nice & toasty for me!

After we arrived in Seattle he looked around a lot at all the people & vehicles. But he stayed with me and his two trainers at all times. At one point when we three ladies split up to look at different things he actually became slightly distressed. I think he thought he was protecting all three of us from the big bad city people. We had fun seeing the oldest Starbucks around.

Then we walked over to eat lunch at a wonderful little place that made the most amazing macaroni & cheese I had ever tasted. I only had a small portion since it was not on my diet, but so glad I ate it- so yummy! Banyan laid by  my feet during the quick meal. Then off we went to walk down to Pike Place Market. The crowds where not to bad but definitely  a lot of foot traffic. He handled it like a pro! He got a little excited when we had a Chihuahua on one side of us & a Seattle Guide Pup in training on the other. But he never pulled to go visit just really wanted to look at them both! His favorite part of the day was watching the "tossing of the fish" when someone placed an order. He loved it!

Here is a quick snap shot of some of the pretty flowers we saw.

 

Soon we made our way into the shopping mall with the glass elevator. Banyan did his up & pushed the elevator button with his paw to open the door. Usually we would want his nose to do the pushing but we where super excited as this was his first attempt at doing this task. He didn't seem to mind the glass elevator as we have ridden in one before. As we trotted through Nordstroms one of his trainers thought that Banyan could carry her Starbucks bag for her. We gave it to him & off he went with her coffee! He loved doing this! We called him back & he handed it to me very gently- super pup! Stephanie was able to get a short video on her phone. I hope she can upload to our FB page later. After shopping it was time to head back to the bus stop & our ride home. We where all worn out from the very windy day. We lucked out and got the larger bus with room to spread out. He laid down and fell promptly to sleep. 

Over all for his first experience at city life he did so great! I hope to repeat this at least once a month now so he becomes a lot more familiar with crowds & public transportation. Banyan needs to be super comfortable with all these things. Jeremy will never drive a car & most likely at some point when he is older rely on the bus to get around town. Our biggest thing to work on is most definitely ignoring other dogs. Today there was no pulling but he was wearing his gentle leader. I know he will get it in time with age. I am just so glad to check another big task off our list! We conquered the bus & Seattle.

Resting outside the cutest little store we found full of doggie goodies.

Happy First Birthday!

We had a really fun day yesterday celebrating with Banyan his first birthday. A friend from Cake Creations by Christina made an amazing cake for Banyan to share with Panzer & his friend Liberty who is also in training. We decorated with some balloons and made the humans cupcakes as well to enjoy. Liberty arrived after school & Jeremy along with the other boys where super excited. We started off playing with the bubbles a good friend to Jeremy named Devon had given Banyan. Then it was cake time! Liberty enjoyed a lot of the cake as Banyan ate very nicely & Panzer had to be fed the cake-haha He wasn't sure he was allowed to eat it I think. Next was present time from Liberty & his mom. They gave him a great Jolly Ball in red- his favorite color! He also received a great birthday surprise in the mail from Loula & Bear " The Service Pups" & their boys. A great red ball to chew as well as a nice new book for Jeremy to read. Everyone was so nice to him on his special day.

Liberty's mom had plans for the evening so we let Liberty have a birthday sleep over & the boys played until bed time. Then they popped up bright and early to play some more. It was a great first birthday & we are so proud of Banyan. He is making great progress with his training. He deserved a fun afternoon off to play & celebrate. We are really blessed to have him in our lives.

 

This is Liberty with the new ball

 

Pounds Gained, Then Lost

Yesterday we had what was suppose to be a quick check-up for Jeremy with his Neurologist. Notice I said was suppose to be quick-haha Nothing is ever super fast at Madigan but yesterday seemed every place we had to go was backed up. Three and half hours later we where done. But not before Jeremy had to give up six viles of his blood. He did pretty well & Banyan was amazing!

Jeremy was so excited that his bandage matched Banyans! This was the first time Banyan had been around for a blood draw and he laid at Jeremy's feet with out moving for the whole time. I was very pleased. Next off to get vitals where Banyan pretty much let the nurse know he was not waiting in the doorway like she asked. He scooted right in under Jeremy's chair while her back was turned, then I swear he smiled at me! This is where the good & bad news starts. Height was great he grew 2 3/4 inches since October-YAY!! So we where optimistic about his weight. Nope, the whole 3 pounds he had gained where GONE! he had lost them  :0( All the hard work & weeks of stuffing him until I thought he'd explode gone just like that. Now we are back into what is causing this??

We are now booked with an endocrinologist in two weeks for more blood work & a look to see if his seizure medications are halting his growth. His doctor has researched the  effects of long term use of Tegrotal. It can cause thyroid issues.  In the mean time we have upped his dose of medication at night for appetite stimulant. I have tried and tried today to get him to eat. Sometimes he would others it was a huge battle of wills. He is also dehydrated, low vitamin D,B, & iron. Geez... so bring on more vitamins. Anyway hopefully we can get some weight on my young man. I call him little guy, but folks he will be twelve in October so he is really not so little anymore. Just small on the outside.  Pray that we can figure it all out & that no drastic measure need to be taken. Jeremy has been through a lot in his short life I really hope we don't have to take him on another journey that is evasive so he get's the nutrition his body needs. But I am fully prepared to take that step if we must.


 For now we are all excited to celebrate Banyan's birthday on Thursday. A friend is making him a cake for the dogs to eat. His friend Liberty is staying the night for a sleep over- yes he is just a dog folks. But he is a very loved & treasured dog who is changing Jeremy's world. Stay tuned for pictures!