Special Thanks!

A special thanks to all the joyful givers at the recent Beth Moore Simulcast! We were able to raise $456 for the Marshall family and had 10 people register to walk! Thank you to all you gave so generously we are just so blessed by your gifts:)

Micah’s Story

Micah Paul Marshall was born on June 2, 2008 and he was perfect in every way. It wasn’t until he was 2 months old that the doctor noticed something wasn’t quite right. Micah wasn’t as wiggly as most 2 month olds. We went to a neurologist and was diagnosed with congenital myopathy, which basically just means he had weak muscles. So we started a rigid physical therapy routine and Micah seemed to be improving. Then at 5 months old Micah stopped breathing and turned blue while sitting in my lap one night. After checking to see if he was choking he began to cry and regain some color. We watched him for a few minutes which seemed like hours and then decided to take him to the ER because he never recovered completely.

At the ER we learned that he had a collapsed right lung and more going on then we even knew. Micah was transported to Cottage Hospital in Santa Barbara and spent a month in the Pediatric ICU where he was diagnosed and treated for Spinal Muscular Atrophy(SMA). SMA is a terminal neurological disorder which is degenerative and there is NO CURE, YET! SMA affects the ability to eat, breathe, smile, swallow, hold and turn your head, move your arms legs, sit up and roll over. Most SMA babies won’t live to see their first birthday but even fewer live till their second. A common cold could kill a SMA child.

Micah came home with a hospital room full of machines and tubes to support his everyday functions. Here are the machines and a brief description of each.

Bi pap machine is a machine that uses pressure to expand the lungs and help keep his lungs open. It also helps him rest because it is stressful for him to try to breathe on his own. He can be off as long as he can tolerate it but we don’t push it. We usually do 3 times a day off for 1 to 3 hours at a time. Once in the morning, again at 2ish in the afternoon and again in the evening, or all the time if he is having difficulty. The machine has 2 filters, one cleaned monthly and one weekly. The mask needs to be cleaned every time we take it off, and the humidifier needs to be cleaned and replaced daily.

Suction: when ever it is needed, part of Micah's disease affects his ability to swallow and has to be watched closely because he could aspirate and cause more problems. The tip, tubes and canister need to be rinsed daily and disinfected weekly. The battery needs to be charged every couple of days.

Feeding: Micah had a feeding tube surgically placed in his abdomen and this is how he eats. During the surgery he also had part of his stomach wrapped around his esophagus so he cannot spit up and aspirate. Feedings are at 10am, 1pm, 4pm, and 7pm with a continuous feed throughout the night from 10pm to 7am. Before each feed I must flush the tube and this is also how I give his meds am and pm, and after the feed I must flush the tube. Feeding bags are changed daily and rinsed between feeds.

CPT: The vest machine, Cough Assist machine. Chest physiotherapy is done 2 times daily. We start with a nebulizer treatment of Xopenex, and then he gets suctioned. Next is the vest treatment, then he gets suctioned. Last are the cough assist treatment and more suctioning. There is an electric percussor and I have rubber manual percussor if the previous things do not get the job done. I also work on positioning with Micah sitting up and on his belly to loosen up the junk in his lungs and work it out.

Micah has a pulse-oximeter which tells us how well his lungs are oxygenating his blood and his heart rate, I usually only use at night of if he falls asleep off his Bi pap.

We have an oxygen concentrator, and oxygen. We haven't had to use the oxygen yet, knock on wood. Bath time is getting hard we have no fancy things to help and Micah man is getting big, 31 lbs and 34 inches, hard to lift in and out of a bath tub. He loves bath time he can move his legs a little bit and his arms well. Lately he has a new trick in the tub, he grabs a play cup and bangs it on the side of the tub and smiles or looks at me like “Did you just see what I did, Mom?”

Micah is now a 14 month old happy boy. We have gotten a medical grade stroller to accommodate all of his machines so we can do outings. He laughs and smiles all the time. He talks with coos and grunts and he is learning to make choices with his eye movements. We still do physical therapy once a week to push his range of motion and work on new positions and strengthen what little muscle he has. Right now he does well off the Bi pap for about 3-4 hours but definitely needs the help. He does not lift or turn his head, move his legs or roll over, but he does move his feet and arms. He has lost a lot of strength in his swallow and tongue and lower jaw, and we have noticed he is loosing his smile on one side too.

Micah loves to be outside; he loves his brother and running around the house to chase him. Yes we chase brother and play hide and seek with him. Micah laughs so hard. He is getting used to sitting up a little more often now and he has just learned how to blow raspberries. It is hard for him. But our life is getting more normal, what ever that is, and enjoyable. It has been very hard to learn to live to enjoy the day at hand and not be upset and wonder when Micah is going to die, but if we focus on here and now life is manageable with lots of prayer. Micah is an amazing child and we are so blessed to have him. We know he is an angel put here by God for us to love and enjoy and take care of to the best of our ability.

Thank you all so very much for all your support and prayer and love. God is amazing and we have no idea how long he plans to let us keep Micah but we will do our best to enjoy every minute of it, good or bad, easy or difficult!!!

MOMMY and MICAHS DAILY ROUTINE!

Between 6:30am and 7:00am I turn off his nightly feed.

8:30am I start his nebulizer treatment with Xopenex and change his diaper and give his morning meds. This treatment usually lasts 20 minutes. While that is going I start his bath.

9:00ish I bathe Micah. Once clean I dry him off and put lotion on him every day because he doesn’t do a lot of moving I like to make sure all of his skin is in good shape. Then I diaper him and put baby powder in his wrists and behind his knees and his ankles and sometimes his neck and dress him. Next is his vest treatment which lasts about 10 minutes, some suction and then his cough assist treatment followed by a little more suction. All of these things are to help loosen and move the junk in his lungs to a place where we can get it out either by suction or cough assist. Usually he does well off his Bipap for a few hours.

10:00am I start his first feed of the day and position him on his tummy. I put his ankle braces on and his wrist braces on.

11:00am I turn his feed off and take his wrist brace off. Usually I put his Bipap on and he falls asleep around 11- 12.

1:00pm I reposition him and start feed #2.

2:00pm I turn off feed and give his med. This is play time off his Bipap.

4:00pm I start feed #3 and put his Bipap on.

5:00pm I turn his feed off and usually he takes his second nap.

7:00pm he gets feed #4.

8:00pm I turn his feed off .

8:30pm I start his nebulizer treatment, vest treatment, and cought assist with suction inbetween. Next I give his meds and we play for a little while because his Bipap is off after the cough assist treatment.

9:30ish Bed time. I hook up his Bipap and his Nightly feed. Turn on his movie for a little while and put his pulse oximeter on his toe.

10:00pm I turn off the movie and we all go to be. Usually Micah wakes up 2-3 times a night just to change his position and he goes right back to sleep.

Micah March 2009

Micah March 2009:

When: Sunday September 20th 2009

Time: 5pm

Where: Starting and ending at Ojai Valley Baptist Church
11642 N. Ventura Ave
We will be starting at the church and walking to the 'Y' and back!

Cost: Registration is $10 to walk
March in Place: If you cannot make it to Ojai but want to March...Register, Collect Sponsorships and friends and MARCH FOR MICAH in your home town!

Get Sponsors:

We are asking that each individual walker collects at least $100 in sponsorships!
your sponsors will make checks payable to

' Families of SMA' or "To the Parents of Micah Marshall"
and in the memo note 'Unite for the Cure/Marshall'
SO START COLLECTING YOUR SPONSORS NOW!!

How to Register for the Walk:

Send Registration fee payable to
'Parents of Micah Marshall'
To: Nikki Clark
PO Box 1154
Oak View, 93022
C/O Micah March 2009

How to Donate to the Cause:

Make Check Payable to 'Families of SMA'
note in the memo 'Unite for the Cure/Marshall'
and send to address above!

Or click here

WE WILL BE ENDING THE NIGHT WITH A BENEFIT DINNER 6:30PM AT OJAI VALLEY BAPTIST CHURCH. IF YOU CANNOT MAKE IT FOR THE WALK PLEASE COME FOR DINNER AND ENTERTAINMENT AND BRING AT LEAST A $5 DONATION!

Questions concerns please leave a comment on this post or contact Nikki Clark (805)340-4409"

Meet Micah and His Family

click here to meet The Marshall Family

Questions:

We wanted to give those of you who are unsure of your opinions of stem cell research another option. If you do not feel comfortable donating to the "families of SMA" Please note that you can give your donations directly to the "Parents of Micah Marshall". Those donations will go towards all of Micah Marshall's medical services , equipment and daily needs.
For more information on SMA visit: www.FSMA.org

MICAH MARCH 2009

When: Sunday September 20th 2009

Time: 5pm

Where: Starting and ending at Ojai Valley Baptist Church
11642 N. Ventura Ave
We will be starting at the church and walking to the "Y" and back!

Cost: Registration is $10 to walk

March in Place: If you cannot make it to Ojai but want to March...Register, Collect Sponsorships and friends and MARCH FOR MICAH in your home town!

Get Sponsors:We are asking that each individual walker collects at least $100 in sponsorships!
your sponsors will make checks payable to " Families of SMA"

and in the memo note "Unite for the Cure/Marshall"

SO START COLLECTING YOUR SPONSORS NOW!!

How to Register for the Walk: Send Registration fee payable to

"Parents of Micah Marshall"
To: Nikki Clark
PO Box 1154
Oak View, 93022
C/O Micah March 2009

How to Donate to the Cause: Make Check Payable to "Families of SMA"
note in the memo "Unite for the Cure/Marshall"
and send to address above!

WE WILL BE ENDING THE NIGHT WITH A BENEFIT DINNER 6:30PM AT OJAI VALLEY BAPTIST CHURCH. IF YOU CANNOT MAKE IT FOR THE WALK PLEASE COME FOR DINNER AND ENTERTAINMENT AND BRING AT LEAST A $5 DONATION!

Questions concerns please leave a comment on this post or contact Nikki Clark (805)340-4409

What Can I Do To Help?

There are Several Things you can do to help the families and children living with SMA!

#1 Sign the Petition to help cure SMA



#2 Donate to "Unite for the Cure"

Please note when making a donation through the families of SMA website by credit card,note in the Donation Message section "Marshall Family" so that they can keep track of our goal! Or Please Make Personal Checks payable to "Families of SMA" and in the memo write: "Unite for the Cure/Marshall"

#3

MICAH MARCH 2009!

Sunday September 20th 2009 at 5pm

We will be starting at Ojai Valley Baptist Church and Marching to the "Y" in Ojai and back! We ask that everyone who registers collect sponsorships from friends and family! Our hope is that each individual will collect at least $100 for the cause.


-The night will end back at the church with dinner and entertainment!! For those of you who cannot march please come to the dinner and donate what you can! Every little bit helps get us one step closer to our $5,000 goal!


-If you do not live near Ojai please MARCH WHERE YOU STAND...you can still register, collect sponsorships and get a group together in your home town to MARCH FOR MICAH!!

If you are interested in registering for the walk or would just like to donate please contact

Nikki Clark
PO Box 1154

Oak View, CA 93022

C/O Micah March

(805) 340-4409

#4 Last but not least and certainly the most important part is that we PRAY!

Ask for God's gracious and healing hands to be upon each and every child and family living with SMA. Our God is Big and can do Mighty things, may we give Him all the glory as we do our very best to support this cause!

THE FACES OF SMA

Please watch this video, send it to your friends and family and sign the petition to cure SMA!

SMA VIDEO

The link to sign the petition is to the right of the screen.

What is SMA?

SMA is the leading genetic killer of infants. It is a terminal, degenerative disease that results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves. SMA impacts the ability to walk, stand, sit, eat, breathe and even swallow. The mind and spirit are no different from that of a healthy baby, but the body eventually fails. Typical babies with SMA Type 1 have a life expectancy of between one and two years and they require around-the-clock medical assistance and monitoring.

for more information on SMA please visit Families of SMA website

SMA Statistics

SMA is the #1 genetic killer of children under the age of 2.

SMA is estimated to occur in nearly 1 out of every 6,000 births.

The gene mutation that causes SMA is unknowingly carried by 1 in every 40 people or nearly 8 million Americans.

There is currently no treatment and no cure, but the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) selected SMA as the disease closest to treatment of more than 600 neurological disorders.

Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.

Because scientists know so much about SMA, SMA is considered a 'model' disease with direct impact on research into many other diseases potentially benefiting millions of people.

For more information about SMA please visit Families of SMA website!