Easter Weekend So Far...

Saturday morning we woke up around 7 for Derek to get ready and go to his moms to work on her bathroom. She has been staying with us for over a week while Derek completely gutted her bathroom and plumed the whole house. He is almost close to finishing and I am READY!!!! I miss him cause he works his normal job and then stays gone for hours working at her house. So I don't feel like I have seen him in about 2 weeks!! : ( And plus I am ready to have my house to just us again! Anyways, usually unless I have something to do, I go back to sleep once he is gone. Just about the time I went back to sleep, I woke up to the power going out... Great!!! Not a big deal for most people (just a matter or inconvenience) but for us, Baker's life depends on electricity!!! Apparently a transformer blew and we had to wait for that to be fixed. After alarms going off and Baker fussing cause he was woken up, I just got on up. I went to the tanning bed for a few minutes that morning and when I got home, I started getting ready for the Fish Fry with Derek's family. We had SUCH a good time with them! Baker was in a good mood and lots of family there to see and talk to. We stayed there for a few hours and then we had to leave for Brewton. My family was having an Easter get together at my Aunt and Uncles house. We loaded up in the van and almost immediatly, Baker went to sleep. He was SO tired!! On the way, something popped under the hood of the van and I heard Derek say from the front of the van, "Crap" Apparently some kind of tension pulley broke and it wasn't allowing the belt to turn so therefore, we had no air, little battery charge, no power steering, and the van was overheating. Ugh... We didn't know what it was until we got home. Yes, we had to turn around and come on home. If we turned the van off, it wasn't going to come back on. Then we would have been stuck. So once we pulled up to the house and got Baker inside and hooked up, Derek went back outside to look under the hood of the van. In the process of taking stuff off to see the belt, he cut his finger pretty bad. So after washing, peroxide, and covering it up... he went back to work and fixed the van. So at least it is fixed, but we missed our family Easter... And one more thing... since I know how our dog it about getting into things, I am pretty good at putting food and stuff in cabinets and off the counter. She had gotten pizza boxes off the counter and eatten all the food, got scraps out of the garbage, food off plates, etc. So this morning, I made sure that I put up the easter baskets... I put Bakers on the computer desk and didn't really worry about it because there was no food in it. But Derek's Basket was nothing but candy. Sure enough, she knocked down the basket off a shelf in the closet and got a hold of all the candy... Out of 9 eggs filled with jellybeans, 14 Reece cup pieces, 8 snickers, 4 cadberry eggs, there is only 3 eggs with jellybeans, 4 Reece, and 1 snickers left... the whole box of peeps are still there.

Overall, it was a very upsetting day... with the exception of about 4 hours. Makes me frustrated cause life just seems to be so hard for us these days... Ugh!!!

HOPEFULLY we will be sharing some good news tomorrow! Lord knows, I need a good day after the terrible day I had today!!

Team Baker

Just incase you haven't seen, I am selling t-shirts to raise money for the Vent Kids of Alabama Summer Camp! I am SO excited to hand over the check to Kara! I hope that it is a success!! Incase you are interested, Shirts are $15.00 and they are Purple with "Team Baker" on the front and "Shining our light on Vent Kids of Alabama" on Back with a lighthouse!
These shirts will be on sale until April 29th but I need the money up front! If you need to mail the money, send me an email and I will give you my address. Or look us up on Facebook! I hope that this will ease the stress of the people putting together the summer camp for the families with children with home vents.

mitchell_emm@hotmail.com

Mole Hill into a Mountain

So yesterday, if you read my post, you heard me talking about the loophole that was going to take so much stress off of Derek and I... WELL, this morning, I thought that since we have been on the waiver list for over a year, I would call and check to see where we were on it... and comes to find out, Baker was taken OFF the list only 14 days after being on it. Never did I get a phone call, never did I get a letter, NEVER!!! Why might you ask? Well this is the funny part... The waiver is to help patients who can't care for themselves, both disabled and elderly. But Since Baker has a trach and a feeding tube, the would have to have a qualified person come into the home... Get this, the person would not EVER have to do anything to Baker... there job is to come in and clean (for elderly, they help bathe them). That's right... a qualified person would be required to CLEAN Baker's room or wash his clothes!!! Ha! Ha! Ha!!! So anyways, I told that women that I don't need a qualified person in the home because I have a nurse who is qualified. Well, since that is the case, I was allowed to be put back on the list. But all of this could have been explained if they would have called me a year ago when they took him off... Apparently, they had tried calling my phone "many" times but I never returned phone calls or answered... Yes, I screen my calls but all she had to do (IF she called) was Leave a message and I would have called right back!!! This is just a joke to me!!! My case worker will have an ear full when she gets back Monday!!

Anywho, I tried calling the Dothan office to see if we were still on the list and if they even offer the respid care. And she never gave me an answer... so I am wondering if the same thing happened there! She is calling me back Monday... and that will be one phone call that I am ready to get!

I guess my problem is that people treat me like I asked to be in this position. Like it is our fault that we want to work and want to better ourselves. I just don't get it! The nation is in enough of a money crunch and yet Medicaid people tell us to get a divorce to qualify for everything. WE DON'T WANT EVERYTHING... We want what BAKER deserves... and we want to continue our lives without worrying about whether or not we are going to loose his insurance because of us trying to work and pay our bills.

Please excuse my ranting and raving... I just am at a loss and don't have a clue where else to turn. Do we move to Birmingham and leave everything that we know and everyone that we love just so the services that Baker deserves are offered? I don't know... Can you tell I am stressed???

On a plus side, Baker got a hair cut!!! YAY!!! He is looking so good!! Thanks Jackie!! Nice to have family come to the house and cut his hair!! Picture to come later!!!

"The pathway is broken, and the signs are unclear. I don't know the reason why You brought me here, but just because You love me the way that You do... then I will walk through the valley if You want me too!"

Baker's Appointment = Mommy's Nightmare

So yesterday was Baker's home-vent clinic in Birmingham. Usually, it is a pleasant experience, but yesterday just started off on the wrong foot. I knew Baker would be fussy since he was awake before 7 and I was right! We were supposed to be on the road by 8 but didn't get the van packed, Baker and ourselves ready, and gas for the van until after 9. THANKFULLY I planned for that! (We are NEVER on time for anything these days!! ) I learned that Baker doesn't like to ride in the van anymore. As soon as we put him in his carseat, he started fussing! We hooked up his movies and that didn't help.

Once we FINALLY pulled up at Children's Hospital, and started getting him out of the van and back into his chair, he was as happy as could be!!! We made it up the the sleep study wing (where his clinic is held) and he never once fussed or cried! He even showed out to the doctor! Singing, talking, and dancing! They were so impressed! Doctor said that she has seen so much improvement in him over the last 2 years! (Praise God!!) It is always nice when doctors, nurses, and therapist tell us that they have missed us cause Baker has been healthy! We sure don't want to visit them very often... much less spend the night with them!! HA!

He lost a little weight, so we up'ed his food per feed. They want him to gain weight, but due to his muscle weakness, he don't need to gain more weight than he can lift or move! We also talked alittle about getting him a motorized wheelchair for him to play around with outside, so that by the time he starts school, he will be able to maneuver it. I thought that was a great idea!! Spoke with our case worker and she is really trying to get us help with finances and stuff. Don't know if anyone is really aware of the struggles that Derek and I face due to our finances, but just so you will be more aware...
The only help that we get for Baker is SSI - a measly $250 bucks a month (doesn't even cover electricity for him) The only way that we get the SSI is if Derek and I work part time jobs and we still have to watch our hours. And in order for Baker to keep his medicaid, we have to draw something from SSI. Long story short, when I called the Medicaid office to ask if there was anything else that we could do, I was told that Baker would qualify for EVERYTHING that the state of Alabama has to offer if Derek and I would get a divorce. I quickly told the lady that divorce wasn't even an option. There was nothing that she could do for us... REALLY?? That was Medicaid's solution!!! So I have been struggling... with school cause I was at the point that I didn't know why I was even going. I wouldn't be able to work and keep Baker's benefits. And if I worked full time then Derek was gonna have to stay home... YEAH RIGHT... Derek can't even stay inside and watch tv. He has to be doing something productive! I just felt that we were being punished because we had a child with special needs, or we were gonna have to punish Baker cause we wanted to be productive citizens...

Ok... back to what I was say.... our social worker has found a loop hole for us, but unfortunately it takes a while for things to plan out. We have been on this list for over a year now and still waiting! (Please Pray that things will work out and we will qualify for this waiver SOON!!) It will allow us to keep Baker's insurance and not be held accountable for our finances... It is strickly based on Baker and his needs!!! HALLELUJAH!!!!

Well I guess I will start wrapping this up! We had a good trip, with the exception of Baker and his fussiness and the 2 hours to drive 30 miles!!!

I'm Back!!!

Ok! I know I have been gone forever and I think it is about time that I start blogging again! This gives all the wonderful people that we don't see everyday a chance to read and catch up on us and our crazy, busy, but wonderful life!!! This is one of my new years resolutions... to keep this blog up! Derek and I have family that lives far away and they have been asking me to do a post. We also have some nurses and therapist that have cared for Baker that try to keep up with him!

Let me start by saying that we had a great Christmas! Baker got lots of toys and so did I!! Derek said he had the best Christmas he has ever had... he got a storage shed!!! When we bought our house, there was one in the yard but it was so raggedy, one strong wind would knock it over. And Derek has lots of tools that need a dry place to stay. Ha! Baker's biggest thing right now is books and movies so he got tons of those. It is hard to find toys for him. Not any toy will do, it has to be an easy touch toy. He like toys that he has to learn with, so he got shape sorters and puzzles. I know that he is delayed but he really is a smart child!! (Thanks to Barney... which he loves)

This is a picture of my family Christmas day! My mom really wanted a picture of all of us and now she has one. Hopefully this will be a tradition every Christmas!!

New Years wasn't anything special... I had to work at the Hospital from 5-11 and so after that I met Derek at a friends house. I did enjoy bringing in the new year with some great friends... Jackie and Wambles. So glad that they live in Opp now! : )

Speaking of great friends... we all got together and decided to have a tacky sweater party... it was a Christmas party, but since we did it in January, we didn't wear Christmas sweaters. We had a BLAST!!! Lots of great memories were made that night!!! Hopefully this is an annual thing as well!! BenJamin won the contest of the ugliest sweater. He had on a pastel women's sweater. It had women in bathing suits laying out!! HA! Hope you can see it in the pictures!! Derek, apparently looked like he should have been in Aspen by a fire. I promise that was an ugly sweater on the rack!! Guess he can just make anything look Good!! ; ) Here are a few pictures!!!

Group Shot


Me and My Boo

There are so many other things that I could post about. But I plan on making a post tomorrow about Baker and his new milestones and accomplishments, as well as recent doctors visits... so Check back!!!

Did you know...

Ok... Since I have been TERRIBLE at blogging lately, I figured it was about time to get started again! A few of my friends have done this and I thought it would be neat to do it too... I wonder how many you already knew?!?!?

1. My mom was told the whole time that I was a boy... SURPRISE!!! Andrew turned into Emily!

2. I was supposed to have a speaking part in the Cinderella play that we did in preschool, but the thought of that scared me to tears!!! I enjoy being the wall flower!

3. I can't stand to hear parents complain about their children. I wish they could put their-selves in my shoes for a day. (Not really. I wouldn't wish this upon anyone!)

4. I have lots of friends, but my only best friends are my husband, Mom and Sister.

5. When I was little, I had a problem with my Achilles being too tight. Since I wasn't going to be a runner or gymnast, mom decided on no surgery. Thank you mom!!! : )

6. I love to go out to eat with my husband because he is a GREAT tipper. I love to make servers feel good when we leave them a very nice tip!!! I remember one time leaving someone over $30 tip for Derek and I!

7. The hardest thing for me to come to grips on is that I can't become a mommy like everyone else. It can't just happen for us and us be surprised and happy. I still wish on a star for a miracle!

8. I still laugh to this day, when I think of a certain adult sticking her tongue out at me!! HA!!! Grow up!!!

9. I have a fear of bridges... When I was in the band on a trip to march in the parade in Mobile, I got in the floor board of the charter bus because we went across a bridge and the driver was terrible!!!

10. Thinks that it is neat to have Baker's nurse be a good friend! And even cooler that her daughter and my niece are good friends!!!

11. I am a terrible back seat driver... Ask my husband! : )

12. I still struggle being around kids Baker's age, or pregnant people. I know that is crazy, but that is me.

13. I am a Christian, but I also speak my mind. Especially when you talk about my family. Recently, people need to get their facts straight before opening their mouths.

14. The last one leads me to say that I can't stand when adults talk about children. Grow up... no wonder kids are the way they are these days!!!

15. I have never broken a bone! Several sprained ankles and tendons. I remember thinking how cool my friend Kristen was cause she had a pink cast and a purple cast!! Ha!!

16. I was at church camp one time when Elba flooded and we lost all power and the boys cabins flooded. One of the boys feel off the top bunk when lightning went through the cabin and he had a huge goose egg on his head! I think Meredith was with me.

17. I used to have a two toned purple room with silver swirls and marbles hot glued to my walls! Also about 25 cardboard framed pictures on my wall!!! I thought my mom was going to kill me and Leigh!!

18. Used to have a dog named Mick-Dog. He was the family dog. I think everyone of the aunts and uncles and grandparents ownded him at one point or another!

19. I have to get on facebook everyday!!! If not, I feel like I don't know what is going on in the world!!

20. I often daydream... Usually that I have lots of money and I am thinking of the perfect charity to donate to! (Maybe one day!!!)

21. I have designed a t-shirt to sale to raise money for my son Baker, But haven't had them made yet...

22. I used to stay at my grandparents house when I was younger instead of going to daycare, and one time Jenny Linton, Drew Mims, and I were climbing in a tree and got stuck there for hours cause a "big, mean" dog was barking up the tree at us. We all thought my Grandfather was an angel when he came walking up to the tree to get us!!!

23. I like to write- poems, stories, letters- whatever it is, I enjoy being creative!

24. I can honestly admit that I can not cook. Well I can cook, but only by recipe! My husband is a much better chef than me!!!

25. And last but not least... I enjoy my life. Sure there are things that I wish I could change... but then again, would I? I have grown and matured over the last 2 years more than I ever expected. God has allowed me and Derek to grow together in a way that most will never understand. We have been faced with challenges and very dark days, but we have over come those valleys and are much better because of them. I remember begging and pleading with God in those first few months of Baker's life. Praying that I could be the mommy that Baker needed to help keep him home and healthy. God has allowed me feel the depression but he has also allowed me to feel the compassion of my family! I can remember talking to Gordon- pastoral at Children's Hospital- about how people deal with pain and sickness alone. I am so glad to know that no matter what- God has blessed me with such a wonderful family- and church family!!!

I hope that you enjoyed reading these!! I have enjoyed doing this and reminiscing over my life! If you are my friend or family- thank you for all the memories that we created!!! There were so many more things that I could have talked about- from slumber parties, to dances, and skating rink trips!!! HA!!! Fun times!!!

Need Ideas!!!

I need some help from my blogger friends and facebook friends!! I need to think of a cute slogan to use on Baker's shirts!!! I want to get shirts made pretty soon, but all I got is "Baker's Buddies" or "Bobcat's Love Baker" But then I am limiting it to Opp fans... and my Brother and his family are Kinston fans!! Just think about it and let me know!!! : )

I wanted to give an update on Baker too, most of you know that he has been sick with bronchitis and apparently strep and an ear infection! But he is doing so much better. He still has a rattle in his chest, but it is getting better with breathing treatments and cough assist. We made a video of him dancing to "The Fresh Beat Band" his new favorite show!!! If I can ever figure out to put it on here I will. I can tell that music is going to be important to him just like it is to Derek and I! That makes me very happy!!! We are going to get him a keyboard for his birthday in May. Gotta start 'em early!! Derek wants him to learn to play the drums... but they will have to win me over on that one! : )

I know this is a short post. I will be back later to update you one some more exciting things (hopefully) I need to be better about my blogs!!! : )