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!

Ticklish!

So last night I had just finished all of Micah's stuff(nebulizer, suction, vest treatment, suction, cough assist, suction) and usually he is great after, little to no secretions, but last night he was just juicy. So I let Daddy have a little lovie time with Micah(that is how we do it almost every night) and when Micah started to have a little bit of a hard time I took him. I held him up on my shoulder because this is how he can be held and still manage his drool. I began to talk to him and tell him I was gonna get him and he just started giggling like I have never heard him giggle before. He had me laughing too. So I kept tickling him until I was tired of laughing. Snuggling, loving, laughing, smiling, talking, happy baby. What is better than that! Joseph wasn't involved in our lovie time tonight because he was already asleep! Thank you God for another amazing day with this sweet sweet baby.

4th of July

I thought I would share this with all of you because I thought it was very typical of a 1 year old. Micah did NOT like the fire works!!! But Joseph loved it! Micah cried for a little while and then just checked out and slept through the rest of the fireworks.

Micah's chair

Thanks to Gwendolyn and her family we found out that we might be able to get one of these chairs too and we were successful. Micah loves to sit up and look around and just be at eye level with all of us. He is tolerating siting in it off of his bi-pap for about 10-15 minutes too which is very awesome. This little guy loves to be outside!!

Here's the new house!!

So this is the back yard, we have a wood deck and a really cool dry scape yard.


This is our room with Micah and that is Joseph's bedroom.

This is the studio and the garage and a picture of the beginnings of the MAN CAVE!!

There is a large living room and a dinning room. The kitchen is awesome and the back room is a den/play room. The back room looks like it was 2 rooms and so we divided it into 2 rooms but they are open to each other. There are 2 bathrooms in this house one is a full bath/shower and the other is just a half-toilet and sink. I can't even begin to tell you how much easier just an extra half bath makes in a house!! We have a laundry nook in the house and I am in heaven,I just wish someone would magically put everything away for me!!! We have so much room for all the equipment here and more than 1 room to hang out in!! Both the boys love it too. There are so many windows which makes it so light and happy.

SMA milestone

I know I said pictures will be coming soon and they will I will work on it tomorrow. I had to share this with you all. I am a very proud mama, Micah just learned how to blow rasberries today. I am so excited, I am trying to get it on video but he stops as soon as I pull out the video camera. I will continue to try to get it though. Yeah Micah.

What has been, and NOW!

Okay so it has been almost a month since I have posted anything on here and I apologize for that. Things have been a little crazy around here. July 1 we move kinda spur of the moment to a new house(we are renting) we LOVE it. It is a 3 bedroom and 1.5 bath with a studio and full bath on the garage. I cannot tell you how important that .5 bath is to us now with Joseph potty trained. Now we have enough places to put things and room to spread out a little. Plus we now have a beautiful grassy front yard and a huge tree that makes shade all day. Micah is loving it here he has a beautiful view out all the windows and we do go outside a lot and just sit or lay in the grass. I promise I will post pictures soon. We have a new chair for Micah and he is loving more time in a new position. He did have a little bit of a funk for a few days and now seems to be doing well again. A lot of excitement!!! I will be posting some really beautiful pictures soon too of our family.


WELCOME HOME STRONG FAMILY we followed you guys just about every day and are very excited you all did so well. Check out the action with Gwendolyn and her 5,000 mile trip to see friends and family on www.gwendolynstrong.com.

Granna's House

Micah man loved being outside today the sun was out and there was a breeze. It was a beautiful Ojai day.

Mommy and Micah man chillin in the shade watching a humming bird.


Oh brothers!! after I got these pictures Joseph pushed Micah on to the blanket almost face first, gotta love it! On accident I think Joseph was just way too excited to sit still much less have is brother on his lap. But I got a very cute picture.

Yeah he is a ham!!

We also swung in the hammock and Joseph and Granna played in the pool and Micah kicked in the pool. Man I love my family Thank you God.

A day at the Park

So my sister in law Nikki, and a great friend Cristin and I decided to make Wednesdays a park day good Idea girls. Although Nikki wasn't able to make it this day.

Silly photo

I know this may not be right. But I had to do it, it made me laugh which in turn made Micah laugh! The things parents do to their kids(maybe it's just me!).

Sunday at the Zoo

Last Sunday Daddy was wanting to have a family day. He has been really busy lately and we haven't had a lot of time all together. So we went to the Santa Barbara zoo and had a wonderful day. We ate lunch and Joseph chased off a seagull that was stealing every one's food. Then we cruised around the zoo. Micah made it the whole trip awake which of course it was right during nap time and Joseph melted right at the end. Good timing. It was a beautiful day and everyone was in a great mood. I love family days.