OUR BIGGEST BLESSING

Micah's 3!!

2011-06-11T17:44:00.000-07:00

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

2011-04-20T08:24:00.000-07:00

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

2010-10-13T19:35:00.000-07:00

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

2010-08-02T18:35:00.000-07:00

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!

2010-08-02T18:19:00.000-07:00

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!!!!

2010-06-02T08:36:00.000-07:00

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

2010-04-07T20:05:00.000-07:00

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

2010-01-16T18:26:00.000-08:00

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!!!

2010-01-01T13:07:00.000-08:00

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

2009-12-24T14:52:00.000-08:00

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

2009-12-10T20:36:00.000-08:00

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

2009-11-01T09:47:00.000-08:00

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!!

2009-11-01T08:47:00.000-08:00

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

2009-10-08T21:28:00.000-07:00

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!!

2009-10-04T08:56:00.000-07:00

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!!

2009-09-25T16:57:00.000-07:00

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

2009-09-16T16:39:00.000-07:00

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!!

2009-09-13T21:26:00.000-07:00

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

2009-08-11T21:50:00.000-07:00

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!

2009-08-11T17:02:00.000-07:00

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!!

2009-08-03T11:11:00.001-07:00

So Micah truned 14 months yesterday!!!

New SMA awareness video

2009-08-03T10:58:00.000-07:00

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

2009-07-31T21:40:00.000-07:00

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!

2009-07-25T08:46:00.000-07:00

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

2009-07-25T08:37:00.000-07:00

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

2009-07-25T08:32:00.001-07:00

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!!

2009-07-25T07:53:00.000-07:00

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

2009-07-24T21:31:00.000-07:00

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!

2009-07-17T16:25:00.000-07:00

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

2009-06-26T22:30:00.001-07:00

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

2009-06-26T22:24:00.000-07:00

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

2009-06-19T12:40:00.000-07:00

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

2009-06-19T12:28:00.001-07:00

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.

ROAD TRIP

2009-06-08T09:28:00.000-07:00

http://

The Gwendolyn Strong Foundation is trying to raise $50,000 on a road trip to take Gwendolyn to meet relatives that never thought they would meet her. What an amazing adventure! What a blessing to these loved ones that they will be able to meet such a beautiful little girl. PLEASE take a few minutes and check out what they are doing it is awesome. If you can spare $10 or $100 they are asking for donations to sponsor each mile they drive. Each mile $10, sponsor what you can or if money is an issue make sure you pray for this family I know how nerve wracking it can be to be away from home with a child with SMA and in need of so much medical equipment.

LET"S HELP RAISE $50,000 FOR ALL THE SWEET KIDS THAT HAVE SMA!!!

What an amazing day!

2009-06-01T08:37:00.000-07:00

Yesterday we celebrated Micah's first birthday, it was great. I got to see a very special friend I haven't seen in years Rachel and her son Dustin, a friend who lives down the street and should see more often The Files and Blaines and a new family who we already love the Strongs. We also had a few very special girls from Cottage Hospital come see Micah and brought us a very special card from all the PICU staff. Thank you Danielle, Rebecka and Grace. Micah was loving all the pretty girls!

We all got there and realized how we had lucked out the park was beautiful. We got all set up and everyone started showing up. I love Birthdays for the kids because its a fun excuse to have fun. All the kids got to play, play, play on the playground area and I got to visit with a bunch of my family who had never met Micah. Right before we were getting ready to do cake Bill, Victoria and Gwendolyn got there. I was just thrilled to meet them. We have been talking over the Internet for six months since we came home from the hospital and we feel like we already know them. The highlight of the day for me was getting to see Micah and Gwendolyn talking, flirting and just enjoying each other! It was so cool. Gwendolyn is such a beautiful little girl and has such a beautiful smile. At 20 months she knows how to get your attention and knows how to make you smile. She is awesome.
So we sang and Micah smiled at everyone singing and then we ate cake. I love cake. We also recognized that Gwendolyn will be 20 months soon and had the bakery put a "Happy 20 Month Birthday Gwendolyn" sign on the second cake we got.
After cake we got to just visit with everyone and started to say bye to all the guests. Once everyone left we gathered up all the balloons and decided to release them in remembrance of all the sweet children that have lost the fight with SMA and in celebration of all the ones still fighting. We love all these children because we know the daily struggle and how special they are.

Here are the names of a few of the sweet children here and in heaven who's stories have touched our lives in so many ways: Gwendolyn, Sophia, Haylee, Casey & Colin, Jonas, Dakin, Brynlee, Karson, Tabitha, Riley, Beau, Owen, Mollie, Georgia, Samantha, Lucia Ana and Taleah. And also MJ Who is an inspiration at 21 years old, You are amazing.

Oh and this is what tired looks like !!! The boys were beat after the party.

Play day at the park!

2009-05-29T18:21:00.000-07:00

Here they are Micah, sleepy boy. Joseph like the energizer bunny, wont stop running around. Kirstianna, she just thinks she is so big! Kirstianna is Joseph and Micah's cousin and I didn't get any pictures of baby Kaeden(I hope I spelled that right) he was sound asleep. Thnak you Auntie Nikki for going with us to the park!!

The aftermath

2009-05-29T18:12:00.000-07:00

This doesn't even do it justice. All his little brusies and little poke marks! It's over though.

Second attempt.

2009-05-28T22:29:00.000-07:00

Today I also had to take Micah to try to draw his blood again. Our first try was terrible. It wasn't because of the lab or the people but because I had fooled myself by thinking that Micah had been doing so well he wasn't really that sick. When they couldn't draw a small amount of blood from him, and he is crying and crying and looking at me for comfort and I can't pick him up to comfort him because they are sticking him for the third or fourth time in his other arm, it hit me hard. My baby is still very sick no matter how well he is doing right now. So they were not able to get blood from Micah at the first lab 3 people tried he was stuck three or four times in each arm and was totally stressed out but the end. They asked if I wanted them to try one more time I said NO!. We called the doctor and go the to get an auth for another lab. I lost it I cried so hard and so long.

So today I took Micah to another lab today I was prepared for the worst and it happened. Micah was stuck three or four times in each arm by 3 people but on the last stick she got it. WHEEW! They were so close to calling the doctor and getting an order to try his feet and legs!!! I do not know how I would have handled that. a few hours after we were home I got a call to let me know everything was normal!! Thank you God!

Tonight Joseph wanted to spend time with Micah , It was so cute. They got in the crib together and watched Despereaux. I love my boys.

Just playin'

2009-05-28T22:19:00.000-07:00

So we had a great night on Wednesday with our friends. They came over to visit and have dinner with us. Joseph loves to play with their kids Caleb and Jackson. Right off the bat I hear Joseph start to cry, they were sword fighting!!! I forget that these kids need to be told that swinging a hard plastic stick at another kid is not really a good Idea. Anyways Joseph got hit in the eye while they were sword fighting and it didn't look very bad at first. Later I noticed his eye getting redder and I knew I better take him to the doctor in the morning. Thursday I took him to the doctor and he has a big scratch in his eye. When the doctor tells you he really whacked his eye hard you know it was a good one. What now, eye drops to keep it from getting infected 4 times a day for 7 days, I laugh because I know what it is like to get eye drops in a 3 3/4 year old's eye.

Micah's new AFOs

2009-05-25T09:39:00.001-07:00

These are Micah's new AFOs they are going to help keep his feel resting in a more natural position and stretch his heel cords so he does not get contractures. They are so cute they have helicopters and airplanes and trucks all over them. So boy, I love it.

Last night!!

2009-05-23T09:18:00.001-07:00

So lat night I was getting Micah ready for bed I cleaned his face and got his jammas on. I had noticed he is having a little irritation on his button so I put a gauze under it and taped it so the movement of it would not irritate it further. then I decided to put the extension tube in and tape it also and when I took micah to bed the tube caught between me and the crib and pulled the whole thing out!! There was an open hole in his stomach and I was responsible for it. I quickly stuck my finger over it so that his whole stomach contents would not come out and yelled for my husband to help me. When he cam in the room he panicked and asked what he could do. I quickly got my head together and got the button back in and cleaned up everything. Of course this is the kind of thing that happens to me when I am trying to be careful with my sons button. Then I gave him some motrin hoping that would stop him from crying and I have yet to look at it this morning but MAN I just dont know!

I am not able to upload the picts from my camera to the computer right now. last week we had a virus on our computer so I need to call the place and ask them what to do about it. Then I will post a pict of Micah's new braces for his little feet!

Oh and he is teething so he has been very cranky and we had a terrible experience at the lab trying to get blood drawn last week . I go more in to it later.

A great adventure

2009-05-12T08:46:00.000-07:00

I finally did it. I made plans for all of us to get out of this stinking house. We are going camping. Mother's day weekend we went to Lake Castias which is only about 10 miles from our house with our trailer. I was a little wound up as I get when I have to get all the things together for Micah alone but then all of us too, clothes dinners toys, you know the drill. I laughed when we finally got set up and I could finally breathe. I have never seen so much equipment for such a small child in my life. It still amazes me. We had a blast. Our friends from Lancaster came over to have dinner with us on Friday and it was so much fun. We sat by the campfire at night, that is my husbands favorite part of camping! we cooked on the BBQ for dinner, We had a beautiful pancake breakfast Sat morning with strawberries. Daddy and Joe flew a kite and we all went fishing. We played on the playground and kicked a ball around with our neighbors. It was so much fun to be away from home but not too far in case Micah needed something of I forgot something.

Sunday dinners.

2009-05-12T08:33:00.000-07:00

So my mother just decided that she was gonna start doing dinner for the family on Sunday, Make it if you can and she'll feed you. That's kinda what she told us. I have been enjoying the time we spend there, I usually only see my family once a week and we live in the same town but mostly because I get to see my brother, sorry mom I love you too, but my brother is 22 and lives in Santa Barbara so we never used to get to see him. Now we know we will pretty much get to see him on Sunday nights.

This is Uncle Sean with Micah a couple of Sundays ago. I am so proud of my brother, he really took Micah's diagnosis hard just like all of us and it was right in the middle of finals at college for him and he still did well. I know Joseph loves his time with Uncle Sean too because Uncle Sean will do just about anything Joseph wants to do.

Memories

2009-04-30T16:57:00.000-07:00

I just found this picture a little while ago. Daddy's glasses on Micah! The things we do to our kids.

God in my life

2009-04-25T21:03:00.000-07:00

Now recently I had a comment from someone on the post I did called Why, this comment was anonymous and it said that a 5 months this baby boy was taken from his family by SMA. The person commenting on my post said that they no longer believe in a higher power because of it. This is sad to me. I just want everyone who reads this to know I am just being honest with how I feel about this whole thing. Raw emotion and my daily life. Some days are better than others and some days I just need to vent. I believe God is very real in all of our lives and especially in mine. I have a beautiful son. Yes he is very sick but God trusted me to be his mother, to give him the most love he could receive in his short life time. I have been entrusted with this beautiful, strong, smart boy that has made my life better. They are so right when they say good things come in small packages. I laugh when he laughs, I can comfort him when he cries and when he needs something he trusts me to fulfill his basic needs. I may not be able to do these things in the "normal" way but I still do these things. I have gotten to know my son better than anyone. Anyone except God.

Now don't get me wrong I am not happy that my son is sick, I don't understand why my son had to be sick but I trust God and I know He has a plan in this. I may not think it is fair or easy or even agree with the outcome but I know that God loves me and my family more than I love them and therefore I trust Him. I have moments and days where I question every aspect of my sons life and what did I do wrong and Why and how come and every question you can think of. That is just my nature. Every day that my son is here and comfortable, every smile, every giggle, every time he rolls his eyes at me I am grateful that I have this child. My son has changed the lives of so many people in this world just because he is who God made him. He has taught lessons like not taking for granted the time you have with your loved ones, good health, beautiful babies and parenthood in general. My life is not by any means easy but it is my "normal" and I am okay with that. I expect God to make all of this right in the end. Now that may not be right in my eyes but it will be right and fair and just by God's standards.

I pray for this individual who wrote me and told me that they have lost faith because of SMA, I pray that you will no longer let doubt in God rule your life. God allowed Satan to take everything away from Job and kill his family and loved ones. By the end of Job's story God had blessed him 3 fold. Job had more love, food, and things that he ever though he could have. Please have faith and trust God. He hurts when we hurt and He wants to help us through these things. It may not ever seem like it will get better but He promises it will. I don't want my son to die but because we thought we were going to loose him in the hospital in December my husband and I take comfort in the fact that he will never have been lied to, cheated, led on, led astray, had his heart broken or been let down. I love God for that. Take this for what ever you will it is just my heart. I don't even know if all of this makes any sense!

Ahh My Boys!

2009-04-25T19:34:00.000-07:00

So today Micah and Joseph had a great day of laughing and bonding. Joseph just hasn't had the same relationship with Micah as he did before the hospital month long stay but their relationship is getting closer again.

A very good day!

2009-04-24T22:12:00.001-07:00

So today we had a pretty good day. Micah spent a good amount of time upright sitting and horsing around with me, Joseph and Granna. I was so proud, I took him to the bank with me tonight and I didn't even take his Bipap or his pulse-ox just his suction and he did great! All the girls at the bank were loving seeing him again and he was loving the attention. Thank you God for such a good day.

Our prayers go out to Beau's family in Australia. Beau was 10 months old and earned his wings yesterday. His battle with SMA is over but never forgotten. Please pray for this family.

WHY?

2009-04-20T08:49:00.001-07:00

I know God is in control of all that happens in my life and I trust Him to know just how much I can handle but I still am mad and sad and do not understand why. I look at some of the SMA kids on the Internet and the sweet families they have and I cant help but think how unfair this is to all of us. Now I know no one ever said life is fair and I know God has a purpose in all of this but I hate it. Every Mom and Dad on here I see with their beautiful intelligent and sick child loves them deeper than I can even explain. But then we have to because we may only have a short period of time to love these children. I don't know why I write this except to vent. I am so upset that there are people who have children and don't want children or maybe shouldn't have anymore children and even people who smoke and drink and do harm to their own bodies while pregnant and will continue to have normal healthy children. But enough I love my babies and that should be enough for me. I am and will always be praying for all you SMA families out there and just know I hold you all in a high respect because this is very hard. Rachel and Kim too!!

The Vest

2009-04-19T17:17:00.001-07:00

We just started another machine. This one is called The Vest and I think I like it. It is a form of CPT and it works very well. Of course it is a hospital grade machine so it better but if I let Micah hold a toy and then hook him up he does fine. Here he is holding his new squeeze rocket given to him by our friend. He loves it.

WE FINALLY GOT IT!

2009-04-19T17:00:00.000-07:00

Yes we finally got our stroller. I took about one day to play with it and figure it all out. It is not like all the strollers out there it has so many things that can be put on and taken off and adjusted so I am still learning. It fits him very well and he seems very happy in it. I love that he can see so much more when we are outside. Thank you to everyone who had a part in helping us get this stroller.

HA HA!!!

2009-04-16T16:14:00.001-07:00

So Joseph is really into swords and knights and dragons so I found some foam shields in the dollar basket at Target and he and Daddy have been dueling!(Yes Daddy's sword is a hockey stick and Joseph's sword is a drum stick!) BOYS

Happy Easter!

2009-04-13T08:48:00.001-07:00

HAPPY EASTER!!!

Stroller!?

2009-04-10T22:31:00.000-07:00

So just a quick update on the stroller thing. We do not have the stroller yet, but it has been ordered so I think in about 2 weeks we should have it!!!!

Some boy time!

2009-04-08T19:24:00.000-07:00

Joseph, Micah and I went to the park this evening. It was a little cold but it was a beautiful evening and so much fun to be out of the house with the boys. I laid Micah on the grass and he was picking at the blades and rubbing his hand in it. Joseph was all over the park burning energy. I love how I tell him to smile and he gives me "rock fingers." I think Micah loves to be outside, he always is just content outside and smiles. This pict is a little off because I took it of us,

but it is cute of the boys.

Happy 10 month birthday Micah-man!!

2009-04-02T17:31:00.000-07:00

Today was Micah's 10 month birthday !!! Yeah Micah. Poor baby he had to get his RSV shot and wasn't very happy with me.

My broken dream

2009-04-01T08:05:00.000-07:00

When I was young I never really wanted to be anything but a mommy. I love kids and really just wanted to find a life where I could be a stay at home mom. I dreamed of having three or four kids close enough in age that they would all be able to play together and have a lot of the same friends. Now I know our dreams as kids often change or it becomes apparent that we were not being realistic about our lives, but that is exactly what I wanted.

I met my husband when we were twelve or thirteen and have loved him ever since. I did have a few years in my life where I left and did some really stupid things and made a bunch of bad decisions, but I would never change a thing. Don and I are who we are now because of the things that we have been through in our lives and I love who we are together. I often think that we would have taken for granted our love for each other if we had not had our separation. I learned during that time what not to do and how I wanted to be loved. Don has always loved me like that. We got back together one weekend when I had come home from up North to visit and his mom had called him to tell him I was in town. He came back to Ojai to see me. I think both of us knew right then and there that we would be forever.

So one night he had me over to make me dinner because I had kind of a hard day at work. He cooked me really good pasta and was so sweet to me. He got down on one knee and purposed to me but when he opened the ring box there was a fruit loop in the box!! Earlier in our relationship I had told him I would marry him even if he gave me a fruit loop. So he did!!Then after we laughed I ate it and he told me to reach under the table and get my real ring.

We got married at the top of beautiful Elings park in Santa Barbara on the most beautiful day in October and it was like a fairy tale. We have so much fun together, we laugh, we just enjoy each other. We both worked hard for the first few years of our marriage and then decided to think about starting a family. After awhile of complications we found out that I was pregnant and at 8 weeks we lost the baby. It was devastating to say the least. A few months later we got the okay to start trying again and within the first few months we got pregnant. Toward the end of my pregnancy we decided that I could be the stay at home mom I had always wanted to be.

Joseph was(is) an amazing child, he did everything early. He walked at 10 months and but walked I mean he ran!! Time flies even faster when you have children. months begin to feel like days and he grew so fast. I loved every moment I got to spend with him. (Now here comes the dream I was talking about earlier)When Joseph was about 10 months old we decided that we would start trying to have another baby. This time we got pregnant again and were so excited because Joseph and the baby would be 18 months apart and it would be PERFECT. At 8 weeks right before my drs. apt we miscarried again. that morning I was alone I remember crying in the shower asking why again, why me and how could this happen again. I tried to call my husband but he was out playing golf and I wanted him to enjoy it. Anyway after that we decided to just let life happen.

Right before our 5th anniversary we found out that we were pregnant again. this time I had a prefect pregnancy no problems no complications. When Micah was born he was beautiful. Different than Joe, he cried and screamed it was awesome. Joseph just looked around when he was born quiet and calm. At two months our world changed forever and my dream was broken. We were told that something was wrong with Micah. It wasn't until he wound up in the hospital at 5 months that they got it right and we knew that our baby wasn't going to be a normal healthy child.

So long story longer, last night we were watching Marley & Me and it hit me hard how broken my dream was. The husband and wife have three beautiful kids 2 boys and 1 girl, the boys were sitting by each other on the bus talking and I just started crying and my poor husband asked why I was crying. All I could say was "that is what I wanted for Joe." I wanted him to have a brother that he could play with and have fun with and run with and wrestle with and I know now that that will never happen. I try not to think like that but in my heart I can't help it. I love my family more than anything and it hurts that Micah is sick.

The Stroller!!

2009-04-01T07:59:00.001-07:00

So Monday I called the insurance company and they told me they had authorized the whole stroller!! So I called the company to see if they were working on it and finally Tuesday they called me and told me that they had received the auth and were going to order it today. THANK YOU GOD. So in about 2 weeks I think we will have a stroller made to carry all the things we need for our little Micah. Thank you to all the people in our lives that have helped us with the money we needed for our part of the stroller. I will let you all know when we get it.

Beautiful Day

2009-04-01T07:53:00.000-07:00

Saturday we took Micah and Joseph to the park in Ojai for a BBQ fundraiser for our church. Micah loved to be outside and it was so good to see everyone. Joseph loved to play, play and spent the whole day eating tri-tip and jumping in the bounce house.

Common Rare??

2009-03-25T17:51:00.000-07:00

I am always trying to find some new info on SMA and today I came across a phrase that I have seen before but today it stood out to me. They call SMA a common rare disease. COMMON RARE?? Yes common because 1 in 40 people carry it. Yet it hardly ever shows up. But I think that it presents more often than is reported but the cause of many infant deaths is ruled sudden infant death or other causes. Our PT told us a story of a mom and a baby who she is sure now had SMA but the baby died during a nap. Mom put the baby down for nap time did a few things and went in to check on the baby and he was gone. I cant even imagine. Remember 1 in every 40 people carry the gene for SMA. Help find a cure go to www.PetitionToCureSMA.com sign it and pray.

Good stuff

2009-03-21T21:11:00.000-07:00

We have a few new things we are doing to help keep Micah's lungs a little clearer. It's working!!! We now have a cough assist machine we do twice a day after a nebulizer treatment of Xopenex and a little Robinul when he seems a little juicy. We do not like the cough assist right now but it seems to work. As you can see he is able to spend a little more time sitting up and not choking. Still fighting with the stroller people and it's been over a month.

Micah-Man

2009-03-18T09:37:00.000-07:00

This week so far has already been busy. Monday I took him to the pulmonologist we see and we are going to be adding 3 more steps to our day. Cough assist we will be doing twice a day to help Micah clear the secretion in his chest, Xopenox is a medicine that helps open up his lungs and another medicine that helps slow down the secretions. He is really good at keeping me busy.

Micah has been sick, a little viral thing I think. As you know we took him to the doctor last week and had an x-ray and that was all okay, but this week he has a fever and has been spitting up green stuff. I am not sure if it is from his lungs of draining from his nose, and he has been very fussy. Micah has also had a higher than normal heart rate and that is a sure sign that something is wrong. Last night we gave him the robinol for the first time and it work great!! He still didn't sleep well but he stopped choking on his spit. This morning he seems to be doing much better, his heart rate is normal for him and he is smiling again. He does still have a mild fever just 99.0 but you never know with these kids.

I wanted to share this verse a friend shared with me. I think of Rachel, Kim, Victoria & Bill, Jen and all the other families out there who are facing challenges like this.

"If your law had not been my delight, I would have perished in my affliction." Ps 119:92

Oh Job

2009-03-18T09:22:00.000-07:00

"The Lord gave and the Lord has taken away: may the name of the Lord be praised." Job 1:21

I read this at the end of a video on u-tube today. The video was a documentation of the 99 day life of a little boy born with a terrible birth defect. The family celebrated every day of his life and the 99 days he lived were a miracle. I feel so guilty sometimes that I get frustrated with the way things have turned out. Why do babies have to be born sick and why do parents have to be told that their babies are going to die. I know no one ever promised life would be fair or just but God is. No matter how hard things are I have to remember always all thing are made right in God. The verse at the top was said by Job, Job is my constant reminder to always praise God and know he is our hope and constant love. The story of Job is what got me through our miscarriages and now is what is helping me through this. Strength I do not have, endurance I do not have, patients I do not have. All of this is God in me, He is the glue that is holding me together. In the end God blessed Job two fold, I think when we go to be with God we are blessed two fold. - Oh man another hard day, probably due to a huge lack of sleep!!

On the mend

2009-03-13T20:27:00.000-07:00

I have been saying for a long time I need to get back in shape, loose a few pounds but this is definitely not what I had in mind. For the last 3 days I have not been well. Wednesday night I began to not feel so well. I didn't think much of it until 10 ish we were going to bed and I began to throw-up and remained in the bathroom getting sick until 3 am. I am doing better now, Thursday I had no strength and sore muscles all over my body and could not eat a thing. I am now up to 1 meal a day, almost 2 but I am still so sore. YUCK!!

The boys are all fine. That is the most important. Micah is enjoying the play thing Daddy built him, he was moving his arm last night and pulling his own hair and smiling. Joseph wants to get out and burn some energy, he has been so good the past few sick days. Daddy is gonna take him to the park in the am and Devo is tired from a long week at work but he is doing well.

Good News

2009-03-10T21:01:00.000-07:00

First I have to say I, all by myself, took Micah to Ventura for an X-ray today. This is a huge thing for me. I haven't done anything just me and Micah since we left the hospital 3 months ago. We did awesome. I never knew one small child could have so much equipment!!

Micah's X-ray was normal, fine , nothing wrong !!!! YEAHHH!!! So now we just have to focus on getting him back to his normal. Lots of CPT and lots of rest. He has been sleeping most of the afternoon and is still asleep now at 9pm. We are on our way to recovery. Thank you every one for thinking of us and praying for us.

Thoes lungs!!

2009-03-09T19:15:00.000-07:00

After Micah's bath today he seemed extra agitated. I took his temp and there was not fever but he just wasn't himself. I called our nurse and she came out and listened to him and checked him over she, like I thought he had an ear infection and that was what was going on. We took Micah to the doctor and there is no ear infection but he was concerned about the diminished breath sounds on his right side so we are going tomorrow to have an x-ray taken to see if there is a pneumonia starting!! I am very nervous I don't want to end up in the hospital again. Micah is acting okay so I hope it is just a viral thing and it will pass. Please keep praying. Thank you.

Fevers this weekend

2009-03-08T19:14:00.000-07:00

I just wanted to let everyone know that this weekend we had a scare. Micah had a fever all day Saturday 100.2 and I couldn't figure it out. His lungs didn't sound bad and his Mic Key button looked fine!?? I started to panic because with Micah I have no idea what a fever could lead to and if I can't figure it out I can't get on top of what ever it is to stomp it out. I called his nurse and her cell was off so I called the office they told me to just give him some Tylenol and extra fluid with his feeds. Yhat night was awful he was woke up crying all night long. But Sunday morning he had no fever. I am very glad he is doing better but I am so confused as to what is going on. We decided to keep him on bi pap most of the day because he sounded a little more junkie today. Hopefully tomorrow our nurse will come and he will sound fine. Joseph also had a fever on Saturday and Devo(my Husband) had a sore throat. My whole family is getting sick, but me!

Stroller update

2009-03-08T19:00:00.000-07:00

After many phone calls back and forth a Man from the company we are getting the stroller from came to our house to talk to me and measure Micah and make sure we didn't miss any equipment on the stroller we need. He was a very nice guy he even told me he has a part that can adapt our carseat to hold Micah's head better so I(alone) can take him places in the car and not worry about his neck. He also assured me that once they got the auth from our insurance to get moving on the stroller they most likely won't deny it down the road. That was February 26th and I haven't heard from them since. I called them on the 4th, 5th, and twice on the 6th and no phone call back. So I have no idea where we stand. I called the V.P. from the manufacturer and she said she did her end of the job she is just waiting for them to call and say send it. I still don't know how much it is gonna cost us or how it suddenly is not too expensive but all that matters is we are getting the stroller we NEED for Micah.

Thanks Daddy!!

2009-03-08T18:52:00.000-07:00

Today Daddy built Micah this play thing. It is very cool because we can give his little arms support so he can move them around . We also can hang toys and wind chimes from it so he can play INDEPENDENTLY!!! (as much as he can)Thank you also to the Strong family for posting a blog about the play thing they have like this for Gwendolyn, that is where we got the idea. Micah loves it!

A little better day

2009-03-06T14:27:00.000-08:00

Yesterday was a hard day for me Micah is doing great but I am having a hard time again. I was doing a really good job of staying numb to all of this and just doing what I had to do every day for Micah and Joseph. For some reason it is all sinking in again and it is hurting all over again. I thought I was done with this until I had to say goodbye to Micah. I am surrounded by family and friends and I feel alone. I hope this will pass.

Micah is doing great still and talking up a storm with his coos and grunts. He's a happy baby!

A hard night

2009-03-05T18:38:00.000-08:00

Tonight I was reading a book by Max Lucado hoping to come across some encouraging words to share with my friend who lost her twin girls. I haven't yet found those words, I have realized how thankful I am for God and that some day my heart might not hurt so bad. I am thankful for the loving family I have and for the REALLY good friends I have.

family photos

2009-03-04T21:36:00.000-08:00

A couple of weeks ago we had some family photos done. We just got them back and I am in awe of how cute the pictures turned out. The lady who did them is Laura Turner http://www.lauraturnergallery.com/ She always does an amazing job. Her eye for a good photo is a gift from God. We love her she did our engagement, wedding, Joseph as a baby and now our family. Thank you Laura.

The boys

2009-03-04T19:17:00.000-08:00

The movie tonight was Sword in the Stone. Joseph climbed up into Micah's crib to watch the movie with him. I love these boys!!

FUNNY?!@?

2009-03-03T20:01:00.000-08:00

So I have to laugh about this or I don't know what I would do. All of you moms out there will love this. So my husband is gone tonight, he is at a meeting for work and it's just me and the boys. We are working on potty training Joseph right now so whenever he goes potty he yells across our little house "Big Pee peee!" I was sitting at the computer printing some addresses on some envelopes and I hear the toilet flush. I ask "Did you go potty?" Joseph answers yes. So I told him good job and didn't think much of it.

A few minutes later I hear water running, Hmmm. Joseph must be playing in the water. (I think it's funny how I never think Oh he must be washing his hands!) So I got up and went to look in the bathroom. The water is not running and even stranger Joseph is not in the bathroom! OH MY it's the toilet!! Yeah the toilet is over flowing all over the floor and there is toilet paper clogging the toilet. So I calmly ask Joseph what he flushed. "Paper towels!!" I forgot to have the We don't flush anything but a LITTLE BIT OF TOILET PAPER conversation with him! Good Stuff!!

HAPPY 9 MONTH BIRTHDAY!!

2009-03-02T20:14:00.000-08:00

So today Micah is 9 months old!! We had a good day Micah was a silly boy today laughing and humoring Mom as I made silly faces and noises. He made me and Joseph laugh too. I think he is doing better lately he has been sticking his tongue out again as you can see in the picture. When Daddy got home he even tried really hard to make Daddy laugh and was successful. Micah has such a silly giggle.

A rare thing!

2009-02-24T21:28:00.001-08:00

So yeah this is a rare thing. Mommy in a picture, usually I am the one taking the picture but here you go !!! Mommy and Micah man. Don't you love the slobber on my shoulder!

Play time!

2009-02-24T21:24:00.001-08:00

Last night my husband and I got to babysit our neice Kirstianna. Joseph loves to play with her mostly because he can boss her around but she just loves Micah-man too. He smiles so big when she talks to him and she likes to hold him!!! (or try to hold him)

I can't believe it!

2009-02-23T12:56:00.000-08:00

I have posted previously that we are working on getting a stroller for Micah so we can get out of this house. So I wanted to share how ridiculous all of this is. There is only 1 stroller that Micah can have because all the rest do not lay flat. Now the company that my insurance is dealing with is telling me that the stroller we NEED is too expensive because the company that makes it will not give them an extra discount!!! They are trying to get us to buy a stroller that will NOT work for Micah and they are trying to tell me that the only one that will work doesn't do what I know it does. The employees at this company do not know I have been talking with the Vice President of the stroller company who has helped MANY families of SMA children! So I am supposed to hear from them today to tell me what they have found out over the weekend and make a decision. I also called the VP of the stroller company and asked if she could talk to these people and let them know why this is a MUST!! It seems to me that in some situations money should be left out of the mix and people should be helped regardless of how much profit there is in helping them.

On the way

2009-02-22T13:45:00.000-08:00

On Wednesday we had to take Micah to the neurologist for a follow up. Micah did very well in the car as long as the Bipap was on. It is very hard for him to remain sitting for a long time if he doesn't have the help of the Bipap. I have to sit in the back seat with him because his head flops around too much to sit without help holding in place! Anyways the Dr.'s appointment was a complete joke, our doctor told us that a diagnosis wasn't important and a bunch of other nonsense. Needless to say we won't be seeing him again. Instead we have an appointment to see the neurologist we saw in the hospital. He really was great.

My boys

2009-02-22T13:41:00.000-08:00

Every once in awhile Joseph wants to hold his brother. Micah is just in awe of Joseph and everything he does and says is funny. You can't usually get Micah's attention when Joe is in the room because Joe has his full attention.

Sweet Baby

2009-02-22T13:38:00.000-08:00

Here is Micah on Valentine's Day I just love his sweet little face.

Micah and Daddy

2009-02-22T13:34:00.000-08:00

Somedays I feel like the luckiest woman on the earth, actually that's pretty much all the time. This is one of Micah's pretty darn good days he was sitting up with Daddy watching TV.

Today was just as good!

2009-02-19T18:49:00.000-08:00

So out of nowhere my husband brings me home flowers. But not just any flowers they were some of the most beautiful flowers I've seen, and for no reason. Not my birthday, Valentiens day, not any special occasion just because he was thinking of me!!! I love him.

SMA

2009-02-17T09:01:00.000-08:00

I don't think I have given a very real picture of what happened or how this diagnosis and hospitalization has affected our family. So I had the most perfect pregnancy, no problems, normal amount of discomfort. Micah kicked me in all the same places my 3-year-old Joseph did and We had no reason to think there was anything wrong. My labor and delivery were probably what most women think they want, 3 1/2 hours from beginning to birth. Micah was healthy, pink, and had a great set of lungs. He screamed!! Joseph didn't even cry when he was born so this was different to me. We thought for sure he was going to be the exact opposite of Joseph, loud and wild. A few hours later he was mellow and content, nursed well and slept great. PERFECT!!

The first couple of months babies don't do much except eat and sleep, poop, pee and cry. Micah did all that very well. It wasn't until we took him to his pediatrician at 2 months old to get a check up and shots that he realized something wasn't right. Micah wasn't holding his head up yet and his muscles were very weak. He wasn't as wiggly as most 2 month old. So this began our process, botulism??, myotonia??? Nobody was sure. Until we saw the neurologist. He was very comforting telling us he knew exactly, just by looking at Micah what was wrong. Myopathy, congenital myopathy not botulism. He was sure and at that he thought that Micah would eventually grow out of it. No further testing was need and even if we did further testing it may not give us any answers anyway. His physical development would be way behind but he would walk someday and run and do all the things that kids should be able to do.

So with that diagnosis we began to research and he never quite fit all the symptoms just a few and only in part. Next we began to get involved with physical therapy and occupational therapy with 2 different organizations and every week Micah seemed to be improving. We saw a pulmonologist, cardiologist, neurologist and the pediatrician. Everybody said that everything was great!! So we continued to do what we were doing and I also began to do massage therapy to help stimulate his muscles. The physical therapist and occupational therapist both, for weeks, told me that his breathing was different, not right. More like a teeter totter, paradoxical. I didn't listen to their concern. He also has a rattle in his throat and I asked the Dr. every time we went and it was never a problem always in his throat and never in his lungs. After awhile I began to ignore it. No big deal!! He had a brother that was always sick anyway from the kids at school.

One Friday my husband and I were talking about a wedding we were going to go to the next day. I hadn't had an excuse to dress up in a very long time and was excited and nervous at the same time. I had my hair done and new makeup and i had a new outfit to wear. Micah began to cough( he had always had a weak cough and couldn't clear very well) and cough. Suddenly I panicked because his face turned BLUE!! I tried to make sure he wasn't chocking and then he began to cry! WHEEEW, but his breathing was funny. We decided to take him to the emergency room right now. We dropped Joseph off at my in-laws house and went to the hospital.

They put him on a pulse oximeter and oxygen and he did okay for a while. they took 1 x-ray and noticed his heart and trachea were deviated to the right!!! That is not normal. He had a collapsed lung. The doctor and staff transferred us to the best place we could have gone, Santa Barbara Cottage Hospital. The doctor there pretty much knew what was going on before he even saw us I think. After one whole month in the PICU, machines to help him breathe, monitors constantly alarming, panicking and worrying all day, no sleep for 3 nights, a terminal diagnosis, wondering if I will even be able to hold him again, being told he cannot nurse any more and having a tube feed my baby, he almost died, watching chest compressions and bagging him, and not knowing why, we got to go home. He smiled at all the nurses and most of the doctors and they almost became my family. I knew every one in the PICU. Micah fit every symptom of his new diagnosis, weak mucles more in the legs than arms, not able to lift or hold head up, never reaches physical milestones such as rolling over , crawling, walking, difficulty swallowing, weak cough, sneeze, cry.

Now we are home. Everything is different. Joseph is a wreck because he has been passed around our family for 30 days and Mom was never there to take care of him. Micah has more equipment than I ever though a 6 month old could have. I am responsible for all of it. We have to take care of all of it!!!

Bi pap machine is used most of the time, he can be off 2 times a day for up to 4 hours each time. We usually do 3-4 in the morning and 2-3 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 9am, 12noon, 3pm, and 6pm with a continuous feed throughout the night from 9pm 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: Chest physiotherapy is done 2 to 4 times daily. There is an electric percussor and I have rubber manual percussor. I also work on positioning with Micah on his belly to loosen up the junk in his lungs and work it out.

Micah has a pulse-oximeter which I usually only use at night of if he falls asleep off his Bi pap.

We also have a nebulizer for breathing treatments, 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, 23 lbs and 29 .5 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.

Micah is now an 8 month old happy baby. We are working on getting a medical grade stroller to accommodate all of his machines so we can do outings, but 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.

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 being held again and sitting up a little more often now. 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.

Slimey smile!!

2009-02-10T20:19:00.000-08:00

Okay so Micah got a new mask and I have to say I love it. He can see so much more and it actually fits him. It leaves no blisters or marks on his little face!!!! I think he likes it too. He has been doing well lately fighting a little junk in his lungs but happy. We have just cut back on his food he has gained too much weight and. The next thing we are working on is the wheelchair stroller that will hold his Bipap, battery, suction, pulseOx and feeding pump with the IV feeding bag if we need it. It also needs to lay completely flat.I am really looking forward to being able to get out and walk with him.

Just a smile

2009-01-23T11:49:00.000-08:00

Some days I wake up and the world just seems too big and my mood is very bad. I love my family and there is nothing I would change but some days I don't feel like I can handle it anymore. Then out of nowhere, a smile one of thoes smiles that you can see in his eyes before it ever gets to his mouth. It doesn't matter if it is my husband, Joseph or Micah it is amazing what a smile can do!! God knows exactly what we need when we need it just to get through that very moment no matter how small that thing may be.

A work in progress

2009-01-22T15:21:00.000-08:00

So here I am trying to get my act together to do this and I just can't think today so I am gonna leave it a work in progress.