Micah's 3!!

So I have been having a really hard time the past few weeks with the reality of Micah turning 3 years old. It is so amazing and wonderful, he is getting ready to start preschool and we are working on getting him a computer system that tracks his eyes. He loves it it is called an eyegaze system by Dynavox. He is amazing in his attitude and intelligence. he is tall and growing like a weed! Right now he LOVES Toy Story and he has to watch Toy Story 3 like every day!

But along with the good i cant help but think about what it means as far as the progression of his disease and the kids that have "earned their wings" this year. Two of the sweet boys I follow on their blog are gone now both before their third birthday, a little girl almost four and a baby just weeks old! One especially hit me really hard, I think its because he reminds me so much of Micah. But enough of that!

Micah is 3 and this is a blessing we thought may never come! Thank you God for one more year and we pray for more!

The Wall

Life here in this world is hard enough just to make it day to day being happy and taking care of yourself. when you have a family your whole world changes and then you are not only taking care of yourself(or in my case you stop taking care of yourself) you are responsible for your family.This is a wonderful thing you as a mother want nothing more than to see your family happy and your children have and do everything. then you run into things like SMA that put an immediate halut to every hope and dream you have for yor child (or in some cases children). The shift in hopes and dreams for your child go from runing and playing, being a doctor and race car driver or lawyer to breathing and moving and geting to celebrate birthdays first, second, and third if God willing.

Long story shorter we are one and one half week home from the hospital after Micah had double pneumonia and right lung atalectasis, desating all the way into the 40s and he is finally starting to look like Micah again! This all started from a silly little cold that Joseph brought home form kindergarten! we all got it and Joseph had an ear infection, i got a sinus and ear infection and Don got the sinus and ear infection! so naturally Micah got this cold too and we first saw it in him on a Wednesday and that Friday we took him to the Dr and he got an injection of antibiotics and a prescription to start the next day because the x ray showed the same old thing RULIPP right upper lobe infiltrate possible pneumonia! Saturday and Sunday he got a little better but after that he seamed to his a wall. Tuesday Danielle and i took Micah to the Dr for a recheck and he wasn't worse but wasn't better either and i was stuck. so on Friday after a few phone calls and lack of air movement in Micah's lungs we went to Dr Landon who is Micah's pulmonoligist and he just said GO NOW! so Friday we admitted to the PICU in Santa Barbara and his Xray showed double pneumonia and that was supported by his blood work and he got worse on Saturday!

When we were discharged on Monday night he was a little better but not where i wanted him to be and the rest of the week he was still struggling so Friday again we went to Dr Landon and he felt that Micah was still fighting an infection of some sort and brought out the big guns and put Micah on a short course of Cipro and an inhaled steroid called pulmicort. He is doing much better and continues to do better every day! I got him to laugh yesterday!

June

Okay this was a crazy month Micah turned 2!!! Yeah Micah! However he was sick on his birthday so we didn't get to celebrate like I wanted to! We did humiliate him even though he wasn't feeling well!

Danielle and John came over to tell Micah happy birthday and give him presents!

Oh yeah we got a puppy! He is a bull mastiff and German Shepherd mix and his name is Beau!

Joseph graduated from pre-school! They had a cowboy promotion party!

And there was lots of snuggles and giggles!

Micah's March 2010

Micah's March 2009

Bill, Victoria, Gwendolyn Strong & Chelsea and Don Marshall

Micah was sick and just out of the hospital so he didn't make it.

Micah’s March 2010 will be held on Saturday, August 28th at 5 pm. Together with many other concerned citizens, I will be taking part in a 3-mile walk through the City of Ojai, to raise money and raise awareness. There will also be a “Benefit Dinner/Concert and Silent Auction” to follow the walk. I hope you will consider partnering with me in this endeavor and help to bring an end to this disease. The walk starts at Ojai Valley Baptist Church and we will walk to Vons and back to the church where we will have dinner and listen to music and have a silent auction.

Let me know if you would like to join me in the walk:

Registration is $10 (Includes dinner and t-shirt) and check is made payable to:“Don Marshall fbo Micah Marshall” and mailed to Nikki Clark at P.O. Box 1154 Oak View, CA 93022Their hope is for each “Marcher” to raise $100.

Let me know if you would like to sponsor me in the walk:

Check is made payable to “Don Marshall fbo Micah Marshall” for Micah’s medical needs or “The Gwendolyn Strong Foundation” for SMA research.

Let me know if you would like to attend the Dinner and Concert:

Dinner starts at 6:30pm @ Ojai Valley Baptist Church 11642 N. Ventura Ave. Ojai$10/ Adult $5/Child $25 Max. per family

August is here!

For some reason I always get nervous around august, I think its because winter is fast approaching and Joseph is going to be in school where the germs spread like wildfire. However August is here and we've already had our first RUN to the doctors. Micah desated last night at the park while the kids and dogs were playing and I had to run him home and give him a breathing treatment and vest him followed by cough assisting and suctioning and I finally got him back to normal almost. Then this morning Micah had another episode off his bipap he desated to 72 and I could not get him back up off his bipap. So I put bipap back on and he continued to oxygenate low at 90 to 92 so I called his nurse and she told me to get him to the doctor. After changed bipap setting, new medication, x-ray and blood gas to do tomorrow, we are home now and doing better. It must be a Monday!!!

HAPPY BIRTHDAY MICAH!!!!

Micah camping with us a couple months ago, he loves so much to be outside around a campfire! Micah's first birthday and his beautiful smile. I cant believe its been 1 year that we've known Gwendolyn and Bill and Victoria, thank you guys for all your support, help and love!

Micah just born, he cried like I have never heard and I loved it. 7 pounds and 1 ounce at 11:04pm and man he was in a hurry to get here! I am so happy!

Happy birthday to my amazing, sweet, funny, stubborn, strong little fighter! Micah you are amazing to me and I am so thrilled and blessed that everyone was wrong when they told us you wouldn't live to see your 2nd birthday. I love you kid.

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.