Granna's House

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

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


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

Yeah he is a ham!!

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

A day at the Park

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

Silly photo

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

Sunday at the Zoo

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

ROAD TRIP

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!

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!

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

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

Second attempt.

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'

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

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!!

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

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.

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

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

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!

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!

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?

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

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.