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.