Team Baker...

So, Lots have been in the works for Team Baker. Finally got the Scarecrow's in the Park finished... so if you are in the Opp Area, you should check it out! Here are a few pictures...

 This is the head made from a gourd and Baker's Vent box... made from a cereal box!! HA! Had to get crafty!!!

 And this is a grown version of Baker!! HA! I thought it turned out SO cute!!! It was nice and scary late at night when I had to come check on Baker and forgot that this was sitting in the chair in at the table!! HA!!! 

 The Team Baker motto... "Ramped up and Rolling with TEAM BAKER"

The next few pictures are the scarecrow all set up at the Park!

And this is the awareness ribbon the Derek and I made! What you can't see cause of lighting is that it says Myotubular Myopathy in Lime Green.

The next project for Team Baker is Opp Fest. We are setting up a booth for people. Paint-a-pumpkin and cookies and maybe a drink. All to raise money for families with special needs children. I can't wait to help the first family!!! : )

My Food for the Soul

So just this past summer, I decided that I wanted to start readying. And since my Mother, Sister, Sister-in-law, Aunts, Cousins... etc have read tons of Karen Kingsbury books, I decided... why not. That was one of the BEST decisions I have recently made!! It has really changed my life! It covers life, death, sickness, love, marriage's ups and downs, accidents that change you, good and bad choices that people make, but most importantly, it all is centered on Christ! And I want that "Baxter" faith! I started with a few independent books cause I knew that I didn't like to read! And I didn't want to start, and never finish. Little did I know, that I would fall in love with her work!! I literally have to make myself put my book down or I will stay up all night reading.

This is the first series... and the one that I am on. I am currently on the last book, "Reunion."

I guess I am telling you this because I have LOTS of friends that are struggling with something from sickness to just life, itself. And I want them to find the comfort that I have found through these books! I think the author has a wonderful gift and I pray that God would continue to bless her!! 

Ok, Now to tell you some FABULOUS News!!! We have been praying and praying for Baker to get a slot with the Elderly and Disabled Waiver since 2009 and FINALLY!!!!!!!! We got the call this week!! So, want to know what this mean now?? It means that Baker will receive his insurance due to his disability rather than Derek and my income!!! Derek is SO excited!!! This means he can provide for his family... like any other husband/father!

So I know this is a small and crazy blogg, but I haven't been doing all that much exciting things!! But soon I will blog about our Team Baker Scarecrow for the park and report from Opp Fest on the Team Baker booth!!!

Vent Camp Part 2

 

Can't get any better than this huh? Waking up to God's Creation!! We love Children's Harbor!!! This was the back porch of the cabin we were in. In the background you can still see broken trees from the horrific storm that destroyed parts of North Alabama (Children's Harbor included) 

Well here are the other pictures that I promised from the 1st Vent Camp post. The first one is cabin that we stayed in. What you can't see is a small couch to the right of the first bed and the bathroom that is on Derek's right side. We had just got there and Baker wanted to get into the pool!

 

Here is my family! This was the day of the parade and everyone was getting themselves and their wheelchairs all decorated! But I wanted to take time to get us all in the picture!! Can't remember who took it for us... but Thank you!! 

 

 Such a cutie!!! : )

Ok, we tried REALLY hard to get Baker to let the clown paint his face, but he wasn't going to let him. Every time he brought the brush up to Baker's face, Baker would just push it away!! So I decided to paint my face instead!!! He did a Great Job!!!

Here is Baker all decked out and ready for the parade!! Woody in tow! 

This is the end of the parade, but it is where Derek was standing to take the pictures!! There were people standing along the way with necklaces, bracelets, and goodie bags to give us! 

This is Tye and he was the leader of the pack this year!!

And at the end of the parade, everyone gets together to take a big Group shot! Usually it is under the awning, but since the storm, there was no awning! : ) I actually think that there were a few missing from this shot. If you have me on Facebook, there is a shot with all the family's too! 

The pool was always a fun activity for Baker and the other children, but since Camp Smile-a-mile was on the other side of the harbor, we had to share the pool, so we found other ways to have fun!! This picture is the last night at the pool, We got Baker out of the pool to dry off and to keep him happy, we brought out the bubbles!! A BIG hit with all the kids!!

I really hope you enjoyed looking at all our pictures from Vent Camp! We had a Wonderful time!!! And can't wait to go back!! 

Also, while I am talking about Vent Camp, I would like to thank all our family and friends that bought Team Baker shirts!!! I sold over 100 and was able to take a nice check to Kara (lady that does everything for Vent Kids of Alabama) to help foot some of the expenses that she put forth to allow families like ours a Great Vacation! So, THANK YOU!!! We will do more next year!!

Baker's First Beach Trip

My number one goal as Baker's Mommy is to allow him to do all things that he would do if he was a healthy 3 year old, running around with no MTM (myotubular myopathy). And one of those things would be yearly beach trips. Family Trips... and this year we FINALLY accomplished that!! And I might add that Baker LOVED it!!! I was so surprised!

A beach trip is something that was strongly discouraged against when Baker was younger. The salty air is great for his lungs, but sand and a ventilator isn't such a great mix!! :) But we were very careful! I thought Derek was gonna go crazy watching the vent to make sure it didn't touch the sand!! HA! Needless to say, we stayed at the pool for the most part!

This trip contained LOTS of first... 

1. Baker went to his First restaurant...

 

Waiting for a table...

 

Helping Daddy decide on some food!! 

 

He looks so cute with his Grandy's hat!! 

2.  His first trip to the Beach

 

Checking out the waves! 

 

He HATED the sand on his legs and feet!!! 

We also had family pictures made and here are a few!

 

He also went Bowling for the first time... But I posted pictures of that on the last post I did about summer. Check them out!! 

But... here are a few more... Enjoy!!

 It rained the first part of the vacations, so we watched Swamp people... Baker loved it, even had an alligator in his hands!

 Dipping his hair in the water

Throwing the ball.

Where did Summer go???

 This summer has been a busy, busy summer for the Mitchell's. It all started with Vent Camp at Lake Martin. Baker's first vacation! And I might say that he loved it! So did his mommy and daddy :) We enjoyed meeting all the families with a child on a ventilator. 

This is a picture of Baker and a few of his new friends after the Big Parade!!! 

Then from Vent camp, we had to get home and settled in cause it was then time to pack up the house and move out! UGH... did I mention that I HATE moving??? It is amazing how much stuff you accumulate in such a small space! Needless to say, that took up the majority of our time. Also, throw VBS in there too! 

 This is Baker in class... He wasn't wanting to color that night... So he threw his stuff on the floor...

 VBS 2011

One of my goals is for Baker to be able to enjoy all that life has to offer! And I meant that Baker was going to VBS even if I had to take him myself. (Derek had to work during the day and when he gets home... he is worn out, so that is why it was me.) Now, I know what you are thinking... But it is so hard to take him anywhere by yourself! Thankfully we just live a road away from church! : )

July 2nd was Derek and my 6 year anniversary and since we were going to the beach in the next few weeks, we just decided to go out to eat in Enterprise at Ruby Tuesdays... My favorite!! : ) Then since we were short handed at work, I offered to fill in some of the slots. (Saving up for the Beach) And on July 15, we packed up our van and loaded Baker up and we were off to the Beach! It was Baker's first trip, but also, it was the first time that Derek and I got to go with the family to the beach since he was born!

Unfortunately, we didn't plan good enough cause we assumed our room would be ground level... and it wasn't. Poor Derek had to pull Baker up all the steps every time we took him out of the room...
But he was a trooper and got an arm work out in the mean time!! HA! Make sure you check back to see lots of pictures from the beach trip! We had a Wonderful time!

This summer was a summer with lots of First for Baker:  First Boat Ride, First Vacation, First zoo Trip, First time to the Beach, First Restaurant, First time Bowling, First Camp, and we hope Baker will get to continue to experience all that life has to offer him! God has REALLY blessed my life with Baker, and I know that he has blessed others too!  Please continue to pray that God will continue to use Derek and me as an Advocate for special needs children. We really have a passion to help others. So HOPEFULLY we will soon start a Non-profit organization called Team Baker and minister to families with special needs children.

The Good and the Bad...

Well, we got so much going on these days... Between raising a family, worrying about hours we work, bills to pay, and trying to do things for ourselves, we also are moving... well, we are gonna start soon! REAL soon. We are gonna be out by the end of this month. "It" just isn't fun anymore... struggling to survive, and only wanting to do better for ourselves, but not being able to fully commit. It is hard to explain, but we want to be comfortable. SO, we are packing up and moving in with my Wonderful parents. They have plenty of room for us, and we will have a floor to ourselves. It will cut down on bills and we will hopefully be able to put money back into our savings, which was depleted when Baker was in Birmingham.

It really doesn't bother me! I am kinda excited! I hate that we have to bring the nurses and therapist into their house, but they offered and said it didn't matter to them. God Truly blessed me with Wonderful Parents!!

Vent Camp 2011

First off, let me just say that this was a vacation that Derek and I desperately needed!!! But not only for the rest and relaxing atmosphere that we were in, but also to meet other families and children who go through the same thing as we do each day. It was neat to see all the different wheelchairs, and communication devices. We heard storied about children weening themselves. (Weening is a term used when we try to take them off the vent for periods of time.) Most of the children, with a few exceptions, are able to be off the vent for hours during the day, some are only on the vent at night. That is our goal!!

We left Thursday afternoon when Derek got off work. We were hoping
to make it there for supper that evening so we could socialize, but due to our constant tardiness... that didn't happen!! : ) We did make it there when everyone was leaving for the pool. So we unpacked and made our beds, got on our swimsuits and off we went to the pool! He had a BLAST!!!! As soon as we got to the pool and walked in the gate, he started smiling and kicking and flapping his arms! He couldn't wait! We got him and us all set and ready to get in! I sat on the bottom step and let him rest on my knees and he played and splashed for 2 hours!! Needless to say when we got him back to the cabin and dressed for bed, he was out in 10 minutes! Great sleep!!

I wanted to share a few pictures...

These next few pictures are from the first full day we were there. The AVS ( I THINK) came for the kids to do arts and crafts! We were worried that Baker wasn't going to do well and pitch a fit cause he hates having nasty hands... and finger paint is a No No! But I guess since he had the sponge brushes, he loved it!!
Baker and his new friend Corey!
This is him making his Bubble gum dot! Everyone got to make a gumball! Thought this was a cute idea!
Getting ready for the boat ride...
Baker's First Boat Ride... HE LOVED IT!!! He wasn't a fan of the wind in his face, but he loved it!!

The night after the boat ride, was Karaoke Night! This was Tye and his family getting things started!!
Listening to the singing!!
The next day they did a carnival for the children. Most got their face painted, but not Baker! He hates to have his face dirty so he kept pushing the hand away!! So instead we let him wear the clown hat!! Cute huh?? ; )
And of course the clown nose!! : )There are more pictures that I want to post of the parade that they went on... That will be in part 2!! I need to go to the gym! I have lost 30 pounds in 2 months and I want to keep it going! I feel so much better about myself and I need to meet my goal for our Anniversary!! Only 17 more to go and I have less than a month! I better Kill it at the gym!! ; )

Life...

Warning: This may make you mad or sound like I am complaining... so if you don't want to hear it... don't read it!! : )

Ok... I am having a hard time understanding why things are the way they are... BACKWARDS!!! I know that most of you that are reading this know us personally or can relate to our situation, but it really urks me that there is NO help out there for us to support Baker. Sure, there is SSI, but that is only because Derek and I make hardly any money. And what we get, doesn't even cover our electric bill. You see, Baker isn't considered disabled because he isn't 18 years old, so we can't just get disability for him. (Which is SO stupid!!! Cause he is in EVERY sense of the word, disabled.) The only reason we keep him on the SSI is because we HAVE to keep his insurance. Just to rent his equipment a month plus his supplies that we get monthly is out of this world!!! Think about it... rentals on a ventilator, humidifier, suction machine, feed pump, oxygen concentrator, pulse ox machine, plus the equipment that we don't use on a daily basis. Then we get suction catheters, trachs, gauze, syringes, water bags, feed bags, feeding tubes, trach kits, vent circuits, etc... the list goes on and on.

I guess it is so hard for me because, I want to work, Derek and I both. We want to be able to support our family like any other normal family would!! We both want to work full time jobs, and send our child to day care and have to worry about bruised knees, or boo- boos. We already have to deal with the stress and challenges of dealing with a child with special needs, but to have to deal with keeping a roof over our heads, or paying bills, or having food to eat because we are being punished because we have a sick child is just wrong. What is wrong with this world when the people that NEED the help can't get it and the ones who don't need it get all the help in the world???

Baker is 3 years old and we have just recently found out about another program called the Elderly and Disabled Waiver... but guess what... Covington County doesn't offer the respid care that Baker requires. SERIOUSLY??? I just knew that EDW would be the answer to many prayers... but now, I don't know what to do, where to turn, how to make things better! I feel like I am lost!

Most people know me as a bright, cheerful person, but if you really knew me in the privacy of my own home, you would know that I am always worried, about Baker, school, bills, working just enough hours, forms that have to be filled out all the time doctors appointments to make, trips to Birmingham, etc. Life just seems to be throwing me punches left and right, and just when I get back onto my feet, I get an upper cut to the jaw! and Back down I go!

I'm not trying to play a pity party, but I just want people to realize what we have to go through daily!! And when you think things in life are hard, try walking in someone else's shoes!! Even I have to do that! I wouldn't wish this on any child! I am so tired of having to defend/fight for my child and our situation. These so called "jokes" shouldn't be told and when they are, they should apologize, expecially from a business. (I am really trying to let that one go, but it is HARD) It is just wrong! Something has got to be done!! I don't know what else to do other than praying and Begging God for help! He has never let us down and just when we think there is no hope, He always pulls through! We don't have the extra's but we have what we need!

I feel like there is more that I want to say or need to say, but I guess I have said too much! I guess this is my cry out for help... I don't know!

Once again... Sorry for putting it all out there!!!

Beating ALL odds!!!

I am proud to say that I am the mother of a THREE year old!! Gosh! I can't believe how far he has come in the past 3 years and how much our lives have changed because of him!! Baker has taught us more about life in the last 3 years than I have learned in my lifetime! I Love him SO much!!!

Here is a picture of Baker... He was a month old and had just had his first surgery. This was also the first time we saw his face with nothing on it... no tape, wires, or tubes!!
And here is my 3 year old!! He was loving those balloons!!
I plan to have some time tomorrow to post his party pictures... It has been a crazy and LONG weekend!