Up to now

June 2011 was my last post so here we go!

Our biggest accomplishment was spending about 15 months out from the hospital! That was our first entire year out of the hospital since Micah was born!

July we took a day trip to the lake and enjoyed the hot summer day! Even though I kept Micah in the shade of the easy up he still got a sun burn DANG IT!

August Joseph turned 6 and started school.

September Micah started school, we did routine labs and X-rays to check on Micah!

October we had our 3rd .micahSMArch.  and my husband and I celebrated our 8th anniversary. Micah was a teddy bear and Joseph was a deceptacon for Halloween!

November had a lot to be thankful for. Micah had a muscle disorder clinic apt and they recommended we go to have an assessment done for a communication device!

December Micah was a little sick but we had a good Christmas and Joseph broke his leg!  Pictures to follow!

January we took the boy to Disneyland Micah in his wheelchair stroller and Joseph in his wheelchair! Pictures to follow.

February Our sweet friend Danielle had a little baby boy named Jackson we visited them in the new beautiful Cottage Hospital. Micah got to hold him.

March we had a couple apts and house sat but nothing much going on this month.

April We attended the MDA winter wine down and got to visit with some friends.  Pictures to follow.

May did a little swimming and our super sweet nurse and very close family friend moved to Washington.

June did some more swimming, Micah turned 4 so we took the boys to Sea World! Pictures to follow.

July we did some more swimming, and then we went to the hospital via ambulance admitted to VCMC but two days later transferred to Santa Barbara Cottage Hospital for 14 days.

Hard days

So I know this probably isn't the way to open after being too quiet for too long but I haven't posted because things have been hard and every time I have started to write something I found it turning real negative, I have always been honest but life is hard and I wanted to be positive and not post a bunch of negative stuff! I have realized recently that it is all life and it's our life good and bad!

So today I am having a hard day, not that you would ever be able to tell but every once in a while  things hit me harder than I want to accept. Today is a hard day, Micah is doing great and I slept well, sounds crazy right? Well for me it IS hard when Micah is having a difficult time with his illness, but I know what to do when he needs help. I hate to say I am used to all that is SMA because as a parent you never get used to this but I am accustomed to our routine .  So waking up to machines, alarms, tubes and wires is my normal.  

Today is a different kind of hard because I want nothing more than the one thing I will never have, I want to hold my son and feel him hold me back.  Sometimes when he looks at me I feel the love he has for me and I want to snatch him up and just love on him but it's never that easy.  I have to unhook what I can and be careful that I know where the rest of the tubes and wires are if I want to hold him and I will never actually feel him hugging me back. I can absolutely see the love he has for me when I look into his little face and most days it is so much more than a hug but some days I just want to actually feel his love.  A little selfish I know but honest none the less.

Micah's 3!!

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

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

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

The Wall

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

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

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

June

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

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

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

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

And there was lots of snuggles and giggles!

Micah's March 2010

Micah's March 2009

Bill, Victoria, Gwendolyn Strong & Chelsea and Don Marshall

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

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

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

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

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

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

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

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

August is here!

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

HAPPY BIRTHDAY MICAH!!!!

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

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

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