Saturday, April 23, 2011

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!!

Wednesday, April 13, 2011

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.

Friday, April 8, 2011

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!"

Thursday, April 7, 2011

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!!!