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!

Mother's Day weekend and Party Planning...

Well Mother's day was this past weekend and it was an action packed weekend. Friday, I had to work at the hospital until 9 and then go over and meet our other friends to play a little "friendly" game of Catch Phrase! Needless to say, Girls Won!! AGAIN!!! ;) Well we tried not to stay too late cause Baker had a party Saturday morning. Recently, it has been hard for Derek and I to get things going in the morning... and when we have a timeline that we need to make, we are bound to be late. And late, we were... 45 minutes late! I was NOT a happy Camper!!! I HATE being Late to ANYTHING!!! Derek, on the other hand will be late to everything!! Party was so much fun and the kids had a blast! Rylee had a huge water slide and tons of Tiki stuff!! Amy and Brady did a Great Job!

After the party, we came home to wait for the rest of the family to eat and then we went swimming at Mom's. We all grilled out and just had a Great time being together! Derek and I braved the water with the kids and got in the FREEZING pool with Baker, but Baker LOVED it!!! Of course I forgot my camera...

The next morning, we went to church and eat with the other side of my family. But we weren't able to stay too late cause we had to make it to Derek's family get together at the lake. That was lots of fun! The weather was perfect. It was warm, but with the wind, it wasn't that bad in the shade! Needless to say, when we got home from the lake, we were exhausted... but unfortunately for me, I had finals and a final lab practical the next day. (Which I did pretty good on)

Well That was the recap of my weekend. I will have new post after this next weekend. Baker is having his 3rd Birthday party Friday night... I can't believe it! We have been working hard on it for a while and I can't wait to see how the party turns out!!!! Check back later!!!

Easter Day

Well, thankfully Easter day was much better than the Saturday drama!! Since Derek got the van fixed after the pulley broke, (or so we thought) we were able to enjoy our Easter Sunday!! The morning started with the Easter Bunny coming for a visit!!

Here is Baker's Basket...
As you can see, He was excited...
His favorite things were the webble wobble toys that go in the pool!!
After we did the whole Easter Bunny thing, we started getting ready in our Easter clothes! I was really excited to wear my new dress... I have been going to the gym and doing Zumba and really working on myself and I had lost 15 pounds in just the month of of April, So when we bought the dress smaller than my usual size, and it fit, I was so SO happy!!
Here is a picture of us dressed and ready for church!

And of course our family pictures...
Ok!! And one more... even though it was blurry, I really like this picture!!

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!"