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.

Micah in the news

Check out the info about Micah and Micah's March Sept. 20 in the Ojai Valley News!! Thank you to all involved. We were supposed to do the interview for the paper but wound up in the hospital! http://ovnblog.com/?p=1757

Home Sweet Home!!

So we are home from Cottage Hospital tonight and I am a little out of it. Wednesday night Micah would not sleep he just cried and cried and cried and his heart rate was high but nothing else was obviously wrong. Thursday morning his breathing was not right, so I called our palliative care nurse and she told me he needed O2 and to go to the hospital, our doctor was called and had the same response. So off we went. Our amazing nurse and great friend Danielle met me and my mom at the ER and helped us. Micah crashed in the ER, chills, goosebumps clammy skin blue fingers and then he just shut down and closed his eye as we sat and waited and waited, you know the usual ER process hurry up and wait. After the x-ray came back we were told and showed that Micah had an area of collapse again but this time it was just the right upper lobe and not the whole lung. No one could get a regular IV in Micah(he's a hard stick) so he got an IV in his neck and a round of antibiotics while in the ER. The funny thing is after that he seemed better when we got to the PICU. Micah was doing better he was making up for 2 days without sleep and in the morning the x-ray came back perfect!! AMAZING!! we normally you'd thing the this would be followed by a speedy recovery and a journey home. Micah had other plans. Our doctor wrote up discharged papers for Friday but Micah had a very hard morning, had to be put on O2 and took almost 4 hours for him to calm down enough to sleep. Sunday though Micah did great and after a long talk with the doctor, he turned Micah O2 off and he did fine and the doctor sat Micah up and he did fine!! we left the PICu at 4:00 pm and only had one quick but scary episode on the way home where Micah began to cry and then desaturated to 79 and his heart rate fell to about 88 we think it was due to his positioning in the car seat. once home Micah has been a champ hanging out at about 95 saturation and looking pretty good. He still has a LOT of junk in his lungs and his cough is really hard for him. Please continue to pray for little Micah, he still really needs it we are not out of the woods yet, just the PICU

***THANK YOU SO MUCH BILL AND VICTORIA FOR YOUR LOVE AND SUPPORT AND ALL THE GOOD FOOD, YOU GUYS ARE AWESOME. MICAH LOVES HIS LITTLE BLANKY AND PINWHEEL.

***THANK YOU TO ALL THE AMAZING NURSES AT COTTAGE IN THE PICU AND THE RTs YOU GUYS ARE LIKE FAMILY! THANK YOU DR. LEHMAN FOR YOUR SUPPORT AND CONCERN FOR OUR COMFORT.

***THANK YOU ALL FOR YOUR CONTINUED PRAYER FOR MY BABY MICAH I KNOW GOD CAN HEAR YOU AND HE HAS ANSWERED YOUR PRAYERS.

Light a candle for SMA

Saturday night was a world wide candle lighting for all the beautiful children who have passed and all the children who are still fighting SMA. Joseph fell asleep early so me and Micah lit a candle and prayed together! I love that kid!

A Great Day!

Joseph was so happy, he took this picture all by himself!

I have been trying to convince my self to get off my bum and do more with my family. yesterday was the first of many adventures even though we have been to the Santa Barbara Zoo before. I had a great time. When we got there we met up with Danielle, who is such a beautiful person. Danielle is a PICU nurse who took care of Micah during our month long stay at the hospital when he was 6 months old. It warmed my heart and I loved her from the beginning because she was one of the only nurses that would sit with him during the night and hold his hand or talk to him. She was always more like a good friend than a nurse. She was also one of the three people who saved him the night we almost lost Micah. Anyways Danielle sat and ate lunch with us, helping me keep both boys entertained and talking about how her fiance purposed to her this last weekend. We walked around for a while and then we were meet by Victoria and Gwendolyn. I had the greatest time at the Zoo. I love to see Gwendolyn's eyes light up when she meets someone, and her beautiful smile. I forget a lot how important it is to have some time with grown up people. I get so used to being a mom and caregiver that I forget how to be a woman too. Danielle stayed with us while we bravely took Micah and Gwendolyn and Joseph on the train and I was very impressed with us. First time both of us had tried to get the equipment and kids on the train. A lot of work for a 15 minute train ride but well worth it. Both kids loved it Joseph has been on it before and still loved it. After the train ride Miss Danielle went home to nap before her night shift at work and Victoria and I strolled around the zoo and chatted about all things SMA. Thank you Victoria! I feel so blessed to have another mom so close to me to talk to about all this stuff. You girls are the best!

And again, yes this is what tired looks like!!!!

Happy 14 Month Birthday Micah Paul!!

So Micah truned 14 months yesterday!!!

New SMA awareness video

Watch this video and see if you recognize any of the beautiful babies!!


http://www.youtube.com/watch?v=DncMkpqn_xo


Thank you Strong family for getting this wonderful video together.

Goin' ons

Micah and Daddy talking and laughing!

We were playing peek-a-boo!

This picture is kind of silly but Micah was blowing raspberries while getting his vest treatment.

I found this website through a friend's blog and I loved it. I wanted to buy every child I know one of the dolls. I was upset that I couldn't get one for Micah for his birthday but Auntie came through. It is very cute! Thank you auntie for this very thoughtful gift!! A hand made doll that has a scripture patch on his belly reminding Micah to be strong and courageous and to do everything in love. And it has Micah's name on it I love this. Micah likes the doll too! Check it out http://www.babybeblesseddolls.com/.

Be on your guard, stand firm in the faith, be men of courage, be strong. Do everything in love.- 1Corinthians 16:13-14 Joseph and Micah-Man and the new guy!

Joseph fell asleep getting a hair cut!

Daddy and Micah-Man snuggling on the couch!

Micah hasn't done this in a long time but lately he has been able to sleep with his Bipap off!