Love Arrived in the Mail

 Today the mailman rang our doorbell & all I hear where little boy squeals of "mom come here fast!". I came into our living room to find Jeremy hugging this box on our couch. We had been waiting since last week for the arrival of this special box. Just like we had been watching for months as every single cross-stitched quilt square from around the country came to our quilter Cottie.

We had seen past quilt recipients pictures on-line and knew they where special quilts . But I had no idea how truly special until I opened the box. I was stunned into silence as all four boys ewwwed & ahhhed over the beautiful quilt. It was much larger then I ever expected & will easily fit on Jeremy's full size bed. Every square contains a different dog that was sent from as far away as Japan. It's so soft , fluffy, & amazing. Words & pictures just can not do this quilt justice.

They even made a beautiful little throw pillow to go on the bed. I was so scared to even let Banyan or Jeremy near the quilt at first. Then I remembered the first email I received that said the quilts where made to be used and help soothe. I let Jeremy spread it out and Banyan plopped right down with out us asking. I think he knew it was his quilt to & he was after all the inspiration.

If you have a child with severe medical needs please take the time to head over to Love Quilts and fill out their application. They can't except every child's application so I didn't even tell Jeremy about the process until we got the email saying he had been picked. These quilts take months to make and the squares are just so breath taking. Thank you doesn't seem like enough to say to everyone who helped put such a huge smile on Jeremy's face. We are switching his bedding out tonight and I'll sneak in for a picture of him asleep later. Thank you for making my son feel so loved & so extra special. We will never forget your kindness.

Virtual Walk

Stay Tuned on July 1st I will post how you can join us in a Walk or Run to help raise funds for SUDEP. Chelsea Hutchinson Foundation does the walk every year to help raise more money for children in need of Grants for Seizure Alert Dogs & Emfit Monitors. This is the amazing foundation that hopes to help Jeremy get the last bit of money needed to finish Banyan's training. We are more then happy to help them with this walk. We can't be in Colorado or the other locations to participate in person. Therefore we will make a virtual team to walk here in WA. Anyone will be able to join Jeremy & Banyan's team to walk whether they live in WA or around the globe. You will receive a T-shirt to wear that day you complete your walk or run. As soon as I get it all set up I'll post & you can join us and help spread the word!

 

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.

Home to Washington

We traveled back to Oregon today to check on Banyan & we where so excited to get to bring him home with us! Jeremy was thrilled to learn we would get to take him home in the van to stay. We had another two hours of class & then off we went with Banyan & James. James is a friend's Medic Alert dog who was in Oregon for some extra training. He needed a lift back home to his Josh so we let him hitch a ride. The pups where so well behaved I almost forgot they where even in the van. Jacob came along with us & had a lot of fun. We are now all adjusting to the new puppy. Heidi is mostly unaffected & Panzer is not thrilled even a little bit! Hopefully after a few days everyone settles down into a good routine. We have lots of hard work ahead!

They gave Banyan to Jeremy- he was so happy

Jeremy was telling Jacob that Banyan was all his!

Jeremy & Banyan "Our Journey" 

Training in Oregon & in Washington

 Today has been another day of all things Banyan & Jeremy. I did sneak out to get my oldest to the Orthodontist for his braces but then right back to phone calls. We received some more good news that a local soldier out of Camp Murray  has a Service Dog organization that helps soldiers get a trained dog. Well he found out about us as he put it  from a friend, of a friend, of a friend- so we are getting the word out folks-YAY!!  Anyway he called to let me know he was able to talk to Banyan's trainers in Oregon & they agreed that a mom of four with a deployed husband should not be asked to drive to Oregon up to 3 times a month on Saturdays- Hallelujah! Don't get me wrong I was committed to doing it for the 23 months they asked, but was not to excited about rearranging everything on the weekends. Anyway back to the story. He got the OK from our trainers at Oregon Assistance Dogs to agree to let him use his trainer up here in WA get this AT MY HOME!!  Sometimes we will meet at other places like a puppy field trip but if I need the trainer whose name is Debbie-  she can come to me!


Now he only agreed to this for the first 12 months or so of the training, but by the grace of God my soldier will be home by then. We just have to abide by the trainers in Oregon's rules of how he wants Banyan's training to continue- No problem says the nice soldier.  He also is providing a grant to cover a large portion of the fee we owe to OAD- So excited! We still need to keep raising money for future costs like Vet bills, food - they eat a lot & expensive food! Also training treats alot of training treats. I will also make the occasional check in with Oregon maybe 3 or 4 times while Paul is gone. Then more as Banyan finishes his advanced training. God has made this way to easy for us which makes me so nervous. I can't help but ask 1. Is Jeremy about to get really sick in the future so we really need Banyan NOW? 2. God is just proving a point when you ask you shall receive?? I hope it's #2, because I am not excited to see if Banyan can live up to his task anytime soon!


Anyway I wanted to share & let everyone know we are so thankful for all the emails, LIKES on Facebook. I'll share the page again for you all . If you want to follow along on Facebook go here: Jeremy & Banyan "Our Journey"  . Fill free to like our page & you will get more up to date information. We do have our PO BOX listed there if you want to send words of encouragement to Jeremy & Banyan. We are truly blessed & we know it- thank you to everyone & to God.

We Got HIM!!!

I could not sleep in today even though we had the extra hour. It was nice to get up make my coffee & enjoy the silence. I decided to check my email first & I am so glad I did. I received an email around 11PM on Saturday night saying that  Heather & Paul the two trainers we are working with to get a Service Dog where giving Banyan to Jeremy. Not only where we getting him we would get him next Saturday if I wanted to have him neutered by Monday. Of course we said yes please go ahead & get him ready to come to his new home ASAP. I could hardly wait to tell Jeremy, but no way was I waking him or the other boys up at 6:30AM on a Sunday morning. I of course posted it on Facebook & waited patiently for Paul to get on-line & the boys to wake up.

Finally about an hour later both happened at the same time! I wish I had the camera for when I told Jeremy the  news- he was so excited! He really hasn't stopped bouncing all day! Now the task of Fundraising begins because of the enormous financial costs of Banyan's training we will need to ask for help. We have several friends who are helping us turn in grants in hopes some of the cost is covered. We will be doing good old fashioned fundraising on Veterans day we hope. We will see if Starbuck's in Dupont will let us set up a both to collect donations for baked goods. There was also talk of Smooches for Pooches-LOL We have set up a facebook page so anyone can follow along the journey of Banyan & Jeremy even you just go here : Our Journey. 
You can follow along as we pick Banyan up,go to trainings,introduce him to our other two fur babies,& raise funds for one boy to have a life long companion who could one day save his life.

I am sure there will be hiccups along the way as well as tears mixed with laughter. But we are so excited for Jeremy & our family to start this new journey while sharing it with the world.

Enjoy seeing Jeremy play with Banyan after waiting 3 hours in class very patiently.

School Days, School Days.....Mom's a Nervous Wreck Day

After A LOT of work we got Jeremy all set yesterday afternoon to go to school Full time for the First time today! Thank goodness we where on an hour late start or we would have never gotten there on time! He was really excited to go but moving super slow with no medication until right before school means no listening skills either.My patience was tested but my nerves where winning out. We snapped some pictures & off we went! He was all bouncy & happy! He dropped his backpack off & hit the playground running! Never even said goodbye  :0(  I had to go back to drop Jacob off after lunch from a doctor's appointment. I happened to catch a really quick glimpse of Jeremy- who was NOT ready to leave & having fun! That definitely eased my nerves a bit. The house is super quiet & still clean. I am not quite sure what to do with these two hours I have left.......?????? The rest of the week is busy but this quiet time is really new to me, but I am sure it will grow on me fast!

I am EXCEPTIONAL

Today was the day , Jeremy headed off to school for a half-day. I was very nervous he was super excited! We arrived in his classroom right on time & he immediately asked for computer time- lol Once in his desk I asked if I could leave him for awhile & he responded "nope, I think you need to stay mom." so I did. We got ready to head to his first official school assembly called BOOT CAMP. He would sit & learn about Lackamas expectations of their students for the year. I was just praying he actually sat down through the whole thing. Well there was no need for my worry he sat right down & made a friend right away!

After they finished in the gym they broke into classes & toured the school grounds. They learned the rules for the playground,library,cafeteria,bathrooms,music, art room, & bus drop off.Half way through he informed I could leave now-haha I decided to just go back to his class since we only had one more hour for him at school. I helped his teacher a bit & waited. He burst through the door about 45 minutes later with a huge smile. He looked at me & said "can we go home now?". That was my cue, I knew he had been there long enough so we put our pencil away said our goodbyes & headed to McDonalds for a special lunch! His IEP is still getting finished so it works out well that he can only go half-days for the next week. I think getting use to a new routine slowly will work best. 

What made me smile the most today was during the assembly. The principal informed all the kids that they where "Exceptional Kids". Well the Army calls Jeremy our "Exceptional Family Member", so of course he raised his hand & asked "how did you know that already?" I almost burst out laughing because he was so serious & whispered it to his teacher that he was called that all the time at Madigan where he see Dr. Jodi. Anyway we both survived today & I will keep praying that next week goes just as smoothly as today. I hope everyone has a very blessed weekend.

Jeremy at his desk

First school Assembly 

 

Under the Sea Day Camp

Today was all about Jeremy & about one hundred other little people with special needs having a fun day at camp. We arrived around 9AM got registered & headed directly to the fishing dock. Jeremy had a lot of fun catching a nice trout & throwing him back in for another day. He made some art, slid down a huge inflatable slide too many times to keep count.Then the face painter arrived! Jeremy ran to get in line & waited patiently 45minutes until it was his turn. This lady was amazing! We had already watched her paint a blue monster with horns,batman, & now it was Jeremy's turn! He asked for a tiger with orange & black stripes & a little bit of white around the face. She did an awesome job & Jeremy was thrilled! Then it was time to slide somemore & have lunch. Only on today would mommy allow him to have four chocolate chip cookies, a sprite, & a bag of potato chips-whew!!! But thank goodness he ate a banana as well with out me even prompting him. It was time for a nice ride on a pontoon boat around American Lake where Jeremy got to drive for awhile. It was a beautiful sunny day with a clear view of Mt. Rainer. After boating it was time to wrap our day up & head home. We made a quick stop at Dairy Queen for some milkshakes as we where hot, it had finally hit 85 degrees in WA!!! It was a fun special day with my little Angel, I am glad we where able to spend the time together.