Appologies

I want to tell everyone who reads this blog to see how Micah is doing that i am very sorry for disconnecting for so long. The past few months have been trying in our household. Micah has been consistently fighting a cold, but we have been able to keep him home and fight! This is a huge accomplishment to me, i have learned how to use his Bi pap machine to facilitate his breathing when he is in distress and with the medications we have at our home i can get him through the rough spells. That doesn't mean i haven't been seconds away from taking him to the er about 4 times when all the sudden he'd go to sleep or start talking to me and i did take him to the ER once but I have found that place to be a huge waist of Micah's precious time.


We got to meet Danielle's mom, Jody and had a great time snuggling and visiting with her Danielle and John came down to visit.

My husband broke his leg and we all have been sick in shifts around this house, ear infections included. we are just now coming off another cold and i am so hoping its the last of the season but i probably know better.

We have been camping twice in March and had a blast. Danielle and John came down and camped with us and Deb and Mark(Two of our friends from Lancaster) and their 2 kids. It was so much fun and we WILL be doing it again. Micah loved the camp fire he talked and talked to it and his eyes were all lit up watching it. Its not an easy thing to camp with all Micah's gear but he needs to do this stuff and enjoys every moment of it.

Next time we need to get John in the picture too!!

Help us win 1 million dollars for SMA

Please take just a few minutes to see this site and the video(Micah and Gwendolyn are in it) and vote for the Gwendolyn Stron Foundation.


http://www.voteforsma.com

Merry Christmas and Happy New Year!!!

Alright here are a bunch of pictures for the last two weeks or more!!This is Joseph and Micah at Joseph's School Christmas program!(above)
Micah helping mommy frost Christmas cookies!(below)

The kids at Granny's house New Years eve with cousins Kirstianna and Keaden.

Our Family!

Joseph got drums form Santa!

Danielle got Micah a George to snuggle!

Micah and Joe in their matching jammas!

Christmas day evening we went to my moms house and ate more food. Micah loves Granna!

This is my brothers girlfriend Sarah, we love Sarah!

This is Joseph and is Uncle Sean!

And here is our amazing friend and nurse Danielle who came to Ojai to spend New Years eve with us. We had a lot of fun eating tritip and playing board games and video games. Thank you Danielle for hanging out with us!

Remembering Last year

Last year we were in the fight of Micah's life. These picts are a few from the hospital last year.

This picture is the first day home from the hospital 2 day before Christmas.

A my precious boys on Christmas day!

Thankful for the last year

I remember when i was a kid and it took forever for one year to pass, now it flies by faster than i can believe. One year ago we were in the PICU at Cottage hospital on about day 18, we received the worst news a parent can get, Micah was 6 months old. Our son had a TERMINAL illness with NO CURE! Since then we have had 2 shorter hospital stays and lots of worrying but getting more comfortable trusting my instincts as a mom rather than the machine's numbers. Micah has lost his beautiful smile and i think that is one thing that just kills me. sometimes i think i see him smirk though. His eyes still smile and he laughs all the time. Micah is good at making me laugh and that just warms my heart. Joseph went from being afraid of all the change and equipment to helping and playing with Micah. Joseph is very protective of his little brother. Micah is learning how to get our attention and try to tell us what he wants with noises and his eyes. It is amazing to me also that we were told one year ago that our son would probably live between 9 and 18 months and here we are at 18 months and he is still strong and happy and fairly healthy for a kid with a terminal illness. Micah has brought so much meaning to our lives and totally rearranged our priorities and i am so grateful for that. One year is not very long but every day is precious to us. I am so grateful for all the people we have met along this road, for the love and support and the strength I have found within myself. Most of all I am thankful for the last year with my son and every day we get to continue to care for him and love him.

Halloween: few more picts

Here is the group of kids, minus Micah and Kaeden (sorry Nikki if I spelled this wrong) Micah and Joseph's little baby cousin. We had a Buzz Lightyear- Caleb, Woody- Jackson, Dorothy- Kirstianna, and of course the Pirate- Joseph. Kaeden was a puppy. It was the cutest thing.Me and the boys!!

Me and Micah on the Hayride!!!
Joseph was sitting with the other kids and Uncle Jesse.

Halloween!!

Faulkner Farms!!!! I have loved Faulkner Farms since I was a kid. The hay ride and the animals and its just fun!!! So Saturday morning we went to the pumpkin patch with our friends and had a blast. Joseph did the pony ride, played on the hay, both the boys got their faces painted and rode the hay ride and went to the petting zoo. They were great about helping us include Micah on the hay ride.

This is Luck the biggest pony, Joseph had to ride this one!
Micah and Joseph got silly pumpkins painted on their faces!

Joseph and Micah in the petting zoo area.

Micah in his Halloween shirt Joseph made his Granna get for Micah.

The hay maze was Joseph's favorite part. he played on it twice and came home with hay splinters and a huge scratch on his face from jumping across the walls of the maze!

We didn't carve the pumpkins this year but Joseph got a "Mr. Potatoehead Pirate" kit for the pumpkin. He and Daddy put it together.

After spending all day as a pirate Joseph decided to be a cowboy for the evening events. Micah was Yoda!!!

Daddy out trick-or-treating with the kids.

Micah loving all the kids running around with us.

All in all we had a pretty great day Faulkner farms in the morning, pumpkins in the afternoon and then trick-or-treating and games in the evening. Only I did have one really bad thing happen to me at the pumpkin patch. I was waiting for Joseph to get off the pony ride and all the ground there is very uneven and just dirt and mud so when I let go to help Joseph Micah's stroller tipped over and his little body fell forward onto the diaper bag and I freaked out. Luckily Micah was fine, not a mark on him and he wasn't even hurt and there were two other people there that helped me get everything back together. I will never trust the stroller with both the suction and the diaper bag again!

What's now

So we do not have a van to transport Micah and family the way we need to but until we can afford to do that we have set up Micah this way!! Yes he is laying down in his car seat. It works fine for short trips because his breathing is much better and less labored but his feet are up in the air and it cuts off the circulation to his legs!! But it is our only option right now!

This is the most amazing thing to me, Micah is able to hold his legs up by himself after you put them in this position. His own muscles are doing this!!!! YEAH MICAH.

As most of you know it is very hard to leave your children with other people, I am continually blessed to have Danielle for our nurse. This is what we came home to today!! Micah and Danielle snuggling on the couch watching cartoons. Thank you Danielle you warm my heart because you love my Micah.

Beautiful Birthday!!

What an amazing day. My family and I went to celebrate Gwendolyn's 2nd birthday out in Carpinteria at Padaro beach grill. God truly blessed the occasion because the weather was perfect. Sunny and beautiful, slight breeze and the ocean and beach were a beautiful backdrop for the party.

There was a face and tattoo painter and a balloon artist and a huge sand box to keep the kids busy. Miss Gwendolyn looked so cute she had on a big pink crown and a huge tool skirt. She looked the part!!

I am so sorry we weren't more social at the party both the boys fell asleep on the way there. Joseph is able to snap out of his funk when we woke him up but Micah never did. Just as he was calming down and starting to enjoy himself the train came by and honked his horn, scared the living daylights out of a lot of us but poor Micah, I haven't ever heard him cry like that and then he just wouldn't stop. So we had to go but I loved being part of this so special day. Amazing job guys it was beautiful and fit for a princess.

I am amazed at these kids I don't think the doctors take in to account the fight of the child or the love of the parents when they tell you that your child has a life expectancy of 9 to 18 months. Strong family we love you guys and keep up the great work your daughter is a beautiful and amazing "big" little girl.

Micah's March - Unite for the Cure!!

Wow what an amazing night. First I wanted to thank Nikki(my sister-in-law) and Cristin(an amazing friend) for the hard work and the time they spent getting everything organized for this fundraiser. I love you guys and I don't even have words for how much this means to me. I can't believe it. Nikki and Cristin have been wanting to get together and do something for the research that going on for SMA for some time now and thanks so much to Bill and Victoria, the Unite for the Cure challenge presented the prefect opportunity to do this. in less than 2 months they decided what they wanted to do and when , got sponsors, walkers, the event, place, food, music and shirts made!!! I had nothing to do with this except it was in honor of my sweet son Micah.

In the few weeks they were putting this together there was a lot going on in our household. First my other son, Joseph was sick, then I got sick the same time my husband got sick. Then as most of you know Micah got sick and had to go to the hospital for 4 days right before the walk. He was not able to go because his right lung just still isn't all better and putting him in and around all the people and in the heat was not a good idea.

(Micah in the hospital)
The turnout was amazing, I still cant believe it. We had over 100 walkers and I think we raised over $10,000!!!!!! Yeah! I got to see so many people I haven't seen in a while and got to meet some new wonderful people. Bill and Victoria were there with the beautiful Miss Gwendolyn and I got to meet grandma and auntie. I had so much fun! I had no idea so many people loved my son and were willing to support us as we try to cure this awful monster.

Joseph and Daddy were way up ahead of us the whole walk because we brought the Monster wagon. I walked in the back with The Strong crew and I had a great time. Our friend and Micah's nurse, Danielle was there with her fiance, John.
I just want to say THANK YOU SO MUCH to everyone who even just thought about us. God is amazing and He blessed us this night. Thank you for your support and thoughts and prayers and please continue to pray as Micah continues to heal. OHHH I almost forgot the cakes. We love cake so what better excuse to get two than one for the event and one to say thank you to the people who thought to present the challenge. Thank you Bill and Victoria, you are truly amazing people and we are honored to consider you our friends.