I've come to a few conclusions

As many of you know Makily was admitted to the hospital last Thursday night.

She was having breathing and major feeding issues.

Conclusion #1:
Hospital stays with Makily are going to be a part of "My New Normal".



I will no longer say "this is the last hospitalization" when it comes to her. It's been something I have said many times in the past.

I have been in denial about that for a long time. Last week really showed me that it's just going to be something I have to get used to. She has been in patient 11 times in the last 3 years. While she is healthier now than she has ever been, her little body just can't bounce back from a typical cold like most kids.

Conclusion #2:
I will never totally be over the trauma surrounding Makily's birth. It will haunt me forever.

This hospital stay we were at the same hospital Makily was born at. I avoid this place like the plague. I made the mistake of going to the maternity ward to get a coke (it was closest) and I could feel my heart racing just walking through the waiting area. I wanted to throw up. I vividly recalled my sister wheeling me from the nursery after I had seen Makily so sick and how all I could think was "What is wrong with my baby, I think she is going to die". Just walking through that area brings me RIGHT BACK to that place.

The next day I was headed to the parking lot. There was a lady in a wheelchair with her newborn. I assume she was waiting for her hubby to drive the car around and load them up. God forgive me, I wanted to smack her. I walked past her as quickly as possible. I could feel the the tears welling in my eyes as I remembered how I left the hospital the morning after Makily was born. I was wheeled out with empty arms and grief that surpasses words. My spirit was broken and my heart ached. Why didn't I have that happy moment? Why was our car ride home filled with my sobs instead of Makily's newborn cries?

Why?

There is a reason for all of it. There has to be.

Only God knows what it is.


I have to trust and believe that or I will certainly go crazy.

On the other hand all it takes to make it worth it is seeing Makily hysterically laughing over something as simple as a balloon. Knowing that she is my purpose and she has taught me more than I could EVER teach her. She has made me tougher than I ever thought I could be. She is the strongest person I know. How many three year olds get an IV placed and are smiling minutes later? Makily is one of them.

I'm her biggest fan.

Humbled.

Makily's class had a field trip on Friday.

I wasn't sure exactly what was going to happen or what it was other than a Christmas Party in "The Villages" and it was ONLY for special needs children (for those of you unfamiliar with the Villages it is a large retirement community right outside Ocala). We arrived at a golf course. When we got off the bus there were several ladies dressed up in cheerleader costumes, pom poms and all cheering for the kids. Once we got past them there were clowns waiting with HUGE smiles and stickers to hand out. The kids were LOVING it.

I got a lump in my throat.

We were led to a large tent, and they had dance and Christmas music playing. Many volunteers were there to help and play with the children. I realized then how big an event this was when I was told it was for all the special needs kids in Marion County. There were kids as young as three all the way to 18. I got Makily out of her kidkart and began dancing around with her. She giggled like a little maniac and patted me like a crazy (patting is Makily's way of saying WOW ISN'T THIS FUN!). In the midst of our dancing I stopped and looked around for a moment. All I could see were happy children. Some in walkers or wheelchairs, some with braces on their legs all SMILING ear to ear, singing, laughing, dancing and having a blast. Volunteers were holding kids, dancing with others in wheelchairs. Treating them like they should be treated EVERY day of their lives, like the hero's that they are. I was overwhelmed with joy. What a beautiful moment, what an awesome thing to do.

I had to bite my lip to keep from crying.

Then it hit me.

How much I have changed since Makily came into my world.

Truth be told, five years ago...I would have run from this situation like my hair was on fire. I was incredibly MORTIFIED around the handicapped. I just didn't know how to act and was uncomfortable...and now here I stood surrounded by hundreds of handicapped people and felt incredibly touched and humbled at the same time. Touched because someone cared enough to throw this HUGE party for these kids. More than just ONE someone....SEVERAL someones had come together to put this on for these EXCEPTIONAL kids.

I was humbled for many reasons. One of which is that had Makily not come into my life, I doubt I would have the understanding I do now for these children. I wouldn't look at life or the world in the way I do now. Five years ago I would have felt sorry for those kids and walked away as fast as I could to avoid MYSELF feeling awkward. What a selfish, ignorant person I was. I was also humbled because there were many children there that were SO much worse off than Makily is (there were others that were also much more physically able than she is).

There is ALWAYS someone who has it worse than you do. ALWAYS. What's important is what you do with the life God gives you. How you handle the obstacles you are faced with.

THANK YOU LORD FOR GIVING ME THIS CHILD.

Once we were finished dancing we took the kids to eat. They provided Pizza, soda and ice cream for EVERYONE to eat. There were clowns walking around making balloon animals and hats. Makily was ENTHRALLED with one of the clowns and she stared at NOTHING but him while he made her a balloon doggy. They had face painting, Makily is not too keen on letting anyone touch her face so we didn't get to do that.

Once we were done eating it was off for a golf cart ride.

Several people had volunteered to ride the kids around in their golf carts. I am not talking your regular average golf cart either people. I am talking "Pimp My Ride" golf carts...seriously the one we took Makily on was PURPLE and looked like a Cadillac! It was touching to see 60 year old men helping to lift heavy children out of wheelchairs so they could go for a ride in the golf carts and feel the wind in their faces (which by the way Makily LOOOOVES.

It's the little things in life. It REALLY is.

They had a backdrop set up and took pics of the kids with Santa and then gave them the Polaroid to remember their day. They they were sent off with gift bags filled with cookies, fruit and crayons.

I wish I could figure out who exactly put this on and what organization paid for it. We paid NOTHING for this trip. Not a dime. The entire thing was sponsored by an organization I think is called "Special Kids, Inc". I am having a hard time finding out much about them except they are a non-profit in Lady Lake. I told Allen I was so surprised that we had not heard about this in the paper or on the news, they do this EVERY year, how can they not have been recognized for it? Allen said "they probably don't want recognition, they just do it because it's a nice thing to do".

I had to bite my lip again.

Moments that take your breath away.

I don't know if it's the time of year or what but I have been experiencing and remembering many "take your breath away" moments lately.

One of the sadder parts of parenting a special needs child is the grief. While yes I have somewhat adjusted to "my new normal", there are still times that it hits me out of no where. That feeling of sadness for what never was and never will be. I can be having the greatest of days and something will trigger a memory or thought that re-opens the scars I had once thought healed. We have been re-organizing things in our house and I came across pictures of Makily from the NICU. They were basically the worst of the worst that I had put in a box. My first thought was to put them away and move on but NO, I HAD to look. I don't know why. It sparked a memory that I had not thought about in a long time. A few days later I had a phone conversation with Andrea and I told her the story....through tears mind you. She immediately said "girl you have to blog that!!"

So I am.

Makily was about six weeks old. We did not yet know her stomach was not emptying or that she had severe reflux. She was on bolus feeds....for the non g-tube educated person a bolus feed works like this. A large syringe is attached to the end of the baby's tube. Formula is then poured into the syringe and it is drawn into the stomach by gravity. This is the preferred and fastest way to g tube feed. Typically this type of feeding takes about 15-20 minutes. For Makily it could take up to an hour or more.. This was problematic because she was supposed to be getting two ounces every two hours. By the time we would finish a feed it was time for the next. Most people would think "how can it take that long, you pour it in the tube, it goes down...feed finished right?" NO, not so fast. Makily screamed EVERY time we fed her...well she screamed all the time back then but it was worse when she was eating. When you are bolus feeding a baby and they cry...it tenses their stomach muscles which then pushes the formula back up and into the syringe. This is very frustrating for baby and parent...especially at three am. I was up feeding Makily. I had just pumped my milk. She was in the swing because that was the only place she didnt scream 24/7. I had gotten all but about a tablespoon in her and she started screaming and pushed back out all of the milk. To say I was tired is an understatement. I started the swing up to calm her and she stopped crying. So imagine now I am holding the syringe above her while she is swinging in the swing trying to get her feed to go down. I got an ounce down her again and Makily started crying, flailed her arm and detached the tube from the syringe....so my milk poured out all over her and I. I got a towel and cleaned her up the best I could all the while she is crying. I went into the kitchen warmed some of my frozen breast milk and started the feed again. That feed went up and down and up and down the syringe two more times before I had THE NERVOUS BREAKDOWN.

I went crazy.

I took the syringe off Makily's tube and THREW it across the room. I started screaming and ranting "I can't do this, I tried but I AM NOT CUT OUT FOR THIS CRAP!!!!" Allen woke up (he was getting his ONE night of sleep, God Bless him). I told him I was DONE. I didnt ask to have a handicapped kid and I don't know how to be her mother, she doesnt like me. I can't feed her normally OR EVEN THROUGH A TUBE SURGICALLY PLACED IN HER STOMACH! I told Allen I could not handle the pressure anymore, God was laughing at me, at us. This was all a big joke to him and I hated God for doing this to us. Between pumping, being post partum, having and sick baby that cried all the time, no sleep, utter exhaustion and just out and out depression I had HAD IT. I told Allen that I knew he would not want to put Makily up for adoption but that I couldnt live like this anymore. I told him I was leaving. I seriously wanted to go live in a tent on the beach. I wanted to escape my life, anything was better than the hell we were living in...and that is TRULY what it was.....a SLICE OF HELL. (Andrea you described that perfectly)

Allen's response to my insane ranting literally took my breath away.

He didn't respond with anger, tears or even resentment. He said:

"Trish, I understand, and when you decide to come back....Makily and I will be right here waiting for you".

My heart soared and ached at the same time. The love he felt for me and for Makily was so strong that even though I had gone mad and we had this sick child he was going to do whatever it took to get ALL of us through it. Allen truly is the glue that held us together. I do not know what I would have done without him. The next day at the urging of my mother, Makily's pediatrician and Allen I got help. Things didnt get better for a while but I was able to cope with things so much better.

Today I look back and it's hard for me to believe that the happy blue eyed blonde hair little girl I see now is the same SCREAMING baby from back then. It wasnt until weeks and weeks later we found out that Makily's stomach was not working correctly which explained the constant crying. It's hard to know that she was so grumpy because she was in so much pain. Once all of the problems were fixed and she recovered her TRUE personality came out.

Her laugh STILL takes my breath away just like the first time.

Make an on-line slide show at www.OneTrueMedia.com

Okay now we are REALLY close.

We had our home inspection with the Health Dept on Friday. It was pretty simple. He checked how hot our hot water gets, looked at our smoke alarms, counted the bedrooms, walked around outside and asked how many kids we have.

We passed but we need to get a lock case for our medications. Once that is done he will sign off that we are FINISHED with that. I think our licensing specialists (the one that did our home studies) has quit because I had a new lady call me last week and leave a message. She wants to come out and do another home study and meet us. I will give her the remaining paper work then and we are DONE!

I am hoping that we will be licensed by the end of this month. THANK GOD that will be done.

Of course being this close is making me terribly nervous. In a perfect world we will get a newborn as our first placement that we can adopt.....I know this is not realistic though. We are jumping into this blindly by faith knowing that whatever is supposed to happen WILL HAPPEN. God has shown us that time and time again and we really don't have much control anyway.

**I updated Makily's caringbridge page with pics and a new vid...check it out at:
MAKILY'S PAGE

Open Mouth...Insert Foot Moment

*feel free to post yours in the comments section*

When I was planning our wedding I took my niece (she was 17, I was 23) shopping for a dress to wear in the wedding.
I wanted her to wear something black and white (she was going to stand on Allen's side). Anyhoo she found this dress, BUT it was a DARK burgundy. I told her it was pretty BUT not black. She continued to insist is WAS black because she wanted the dress. Her and I jokingly argued over the color of the dress.

So ME being ME....I say "okay I am gonna settle this right now". I walk over to this man, he is sitting in a chair waiting for his wife that is trying on clothes. I thrust the dress in front of him and say "hello sir, can you PLEASE settle this for us...is the dress burgandy or black?"

HIS ANSWER?

"I am sorry ma'am, I don't know, I am blind"
I was so mortified I wanted to lay down and die right there! My neice IMMEDIATELY ran away and I said "I am sorry sir, have a nice night" and walked away with my head hung in shame.

open mouth.....insert foot.

How many kids have to die?

****This blog contains graphic picture, please view and read with caution*****


I have blogged in the past about the nightmare we experienced at Shands Children's at UF when Makily was three months old. I will give a short version of it here but to read the entire story go back to my blog entry here:
Narcotic Overdose
**Here is the short version:**

We were admitted for a leaking G tube and other gastrointestinal problems. Makily WAS NOT ILL, however she was in extreme pain. Her stoma looked like raw meat and was leaking CONSTANTLY. She screamed, writhed and cried for hours. The residents kept giving her morphine that gave her no relief. I asked them to try something else after dose number two did nothing. They gave her ANOTHER 2 doses (for a total of 4) before I refused to allow them to give her any more of a narcotic that was doing NOTHING for her. Finally after she had cried for many hours and had four doses of morphine in her they gave her Fentanyl, she went into respiratory distress and had to be put on a ventilator for three days. We almost lost her. We went in for a leaking G tube and 12 hours later she was on a vent?

This is what her G tube site looked like after three weeks there. This actually looks GOOD compared to what it had looked like. The redness had extended ALL THE WAY DOWN into her diaper area and the skin had sloffed off, it looked much like a chemical burn. The leaking never stopped. We left there with pneumonia, an NJ tube and a STILL LEAKING Mic-Key button. It was not until we went to APH in Orlando that it stopped leaking...and at that point it had to be removed altogether.



The problems continued during the month's stay at Shands. I could tell story after story of things that happened to us.

Last week this story was ran in our local paper.

Joey Schwartz age two was admitted to Shands for chemo. He was diagnosed with cancer at 10 weeks of age. During the chemo treatments he contracted a fungal infection. They amputated the child's leg and had to remove his palate and part of his sinuses to keep the fungus from spreading any further. His parents were informed that the chances of the fungus coming back are rather high and he has been sent home on Hospice. The mother complained about the "musty smell" and pointed out that there were quite a few molded ceiling tiles in his room. She was told it was nothing of concern. She has since found out that there were at least two more children with fungal infections there and they are under investigation now. to read the full story go here:
Shands Mold Problem

I saw the filth on the pediatric floor myself when Makily and I stayed there. The bathrooms were disgusting and the rooms weren't much better. Here are a few photos of one of the bathrooms.




So last week was the story on the fungus, then this week this story comes out:
Little Sebastian Ferrero was going to be tested to see why his growth rate was below normal. He was three years old and smaller than your average child. During the test he was given the amino acid Arginine. He was given more than TEN TIMES the dose he should have been given. Sebastian died two days later. To read the story and see photos go here: Sebastian's Story

Then I saw this report last night and I just can't believe it. Sebastian is NOT the first child to be given an overdose of Arginine. In August this child went in for the same test. He was given half the dose and began writhing and screaming on the floor. He was screaming "My brain is on fire". His mother insisted the test be stopped. She had the nurse unhook her child and they took him home. It wasn't until Sebastian died that this family was contacted and asked about how he was doing by Shands.
Click here to watch video: Overdose on Arginine

During the video there is a doctor that speaks He is the SAME ONE that diagnosed Makily's reflux and told us that it was severe enough that she could aspirate an entire feed in the night and drown in it....then he went on to say that if we didn't want to treat her reflux they would understand since she has Emanuel Syndrome, in his mind it was "okay" for us to let her esophagus BURN 24/7 and to possibly drown in her own vomit because she is a "genetics kid".

I do realize that everyone is human. Doctors put their pants on one leg at a time and they make mistakes. I personally believe that the majority of the problem at Shands is because they let the residents do WAY too much with not nearly enough supervision. I know that everyone has to learn but in some circumstances you should have someone checking and re-checking what is being done...ESPECIALLY WHEN DEALING WITH SOMETHING THAT IS LETHAL if given incorrectly like Arginine.

So our trip to Disney was ABSOLUTELY amazing.

I have not been that relaxed in FOUR YEARS. Makily was a DOLL and she had so much fun. She laughed, smiled giggled and had a big time! We spent most of our days at all the Disney parks and we also took some time our for swimming and lounging by the pool.

Nothing relaxes me like laying out in the sun with a Margarita in my hand.

We met up with the Stephanie (Maia's mommy w/Emanuel Syndrome)and family. We definitley had our moments of "wow's" but one in particular left me in tears. We had sat down to watch "Starship" play. I was sitting next to Stephanie when she reached out to hold Makily. I handed her over and Makily was ENTHRALLED with her. She just stared at Steph with the sweetest most angelic look as if she knew that Steph was a "special mommy". They laughed and giggled. It was way cute and SOOO touching. What REALLY struck me was watching Steph automatically do all the little things that Makily likes to get her to laugh. She knew what to do because she's been here before. I told Steph through my tears that when Makily was born and I found her c22 site that I NEVER could have imagined sharing a moment like that with her. Love you Steph.

I also wanted to say a special thanks to "Kim". I won't go into details but she is an amazing woman and her and I have chatted via email and over the phone...we have something rare in common. She found out about our Disney trip and sent us some gift cards to Disney. How kind and giving is that? Thank you so much Kim. I think of you and pray for you daily.

Foster care licensing is dragging on for what seems to be forever. I just got a call the other day from our agency wondering when we moved in our house. Apparently the people who lived here before us had 40 pages of incidences where the police were called here for domestic violence. She was VERY relieved when I told her we moved in 6 months after the last call was made. Our background checks otherwise came back clean. I have to call again tomorrow to find out when our home inspection is.

Buh bye Blue Lemon....Buh Bye.

After much thought, frustration and well no other choice we traded in THE BLUE LEMON and bought a new/used van.

Did we have the money? No not really. We had to pull it out of places I would rather not talk about. ;-) It basically came down to the fact that it was in the shop more than we had it, and WHO KNEW when that was going to end. Driving back and forth to Orlando with Makily was always nerve wracking. We couldn't keep throwing money into it with the hopes that "this will be it right"?

We got a GREAT deal on a 1999 Nissan Quest with only 58k miles on it. The people here in Ocala at Palm Kia were AWESOME. I of course haggled with them as much as I could and asked our salesman several times if he wanted to take Makily with him to negotiate prices with the manager. He laughed at me. Of course on EVERY PAPER I SIGNED I wrote "sale pending inspection by OUR MECHANIC". We took it in to Dave's and he was IMPRESSED. He went on and on about how he almost NEVER has Quest's brought in and the last one he saw recently had 180k miles on it and the alternator had gone out....big deal. He was floored with how low the miles are on it. So we FINALLY have a van that I don't have to manually drag the window up up while driving, or put water in every single time I drive it.

THANK YOU GOD!

Oh yeah and TWO MORE WEEKS TIL DISNEY!

wooo hooooo

Getting closer, feeling accomplished.

This is me today:

I finished driving school I had to take because of the ticket I got back in June. I did it online because I had no desire to go sit in a room for four hours on a Saturday.
I literally waited until the last minute to do it online. It just wasn't on my top priorities list. While doing that I was also typing up the eight pages of questions and answers for our foster care home study today. Can you believe it EIGHT PAGES! Most of the questions we had already answered in one other form or another on one of the several OTHER packets I had filled out. WHAT FUN.

The lady that did our home study was VERY nice and she was here for about an hour. She asked why I was on Effexor (it's an anti-depressant). I figured that eventually before our licensing was complete I would be asked this question. I was brutally honest. I told her that Makily's birth was terribly traumatic as well as the first year of her life. I explained that I suffered from SEVERE post partum depression as a result of that. I am still on the meds for a few reasons. The main reason being that when I skip a pill or forget one I can quickly see a difference in my mood and my patience level. I just don't see the point in stopping a medication that is obviously helping me deal with life. It does not numb me, I am fully functional and happier ON THE MEDS. Tom Cruise can REALLY BITE ME. When this interview was originally aired on TV I immediately lost all respect for him. (the respect was on it's way out the door already after his insane visit with Oprah and playing trampoline on her couches.)



I find it terribly pompous of him to claim that "exercise and vitamins" will cure post partum depression. I'm sorry Tom but when my daughter was in the middle of a seven hour crying spell and my life was falling apart around me, taking a jog and popping vitamin C was NOT going to help me. NO WAY, NO HOW! He is a spoiled, rich actor who has no idea what he is talking about. Come live my life Tommy Boy and then tell me more about PPD and antidepressants.

*STEPPING OFF OF SOAPBOX AND CONTINUING MY DAY*

She did a walk through of the house to make sure we had all the required smoke detectors and enough room for another child. We still need to have our medical forms filled out (my appt is Wed...oh joy), some copies made and our Health Inspection(waiting for them to call me with an appt on that)and then we are D-O-N-E! We will FINALLY be licensed. SO MANY HOOPS TO JUMP THROUGH!

Once that was done we went to the court house to prove I had taken driving school, picked up the BLUE LEMON from the shop and came home. So many things done and OUT OF THE WAY! LOVE IT!


I am getting so excited about our Disney trip next month. We are going in mid-October to see the St.Pierre family and to have a mini vacation/anniversary trip. Allen and I have been married for seven years as of 9-10 (last Monday). With so much going on we just didn't have time to celebrate it so we are making up for it next month!

The world's gone mad...or maybe it's just me!?

I was going to blog about this a while ago. I stopped myself because I felt like I would only add to the "chit chat" about all this. I am giving in today after I saw a video that at first made me laugh and then really annoyed me.

I think people have really forgotten what is truly important in life. Either that or reality TV and the Internet is totally just making it seem that way to me.

My first example. This video:


Now while I get the embarrassment of taking a bad picture THIS GIRL IS GOING OVER THE TOP. She is hysterical about a picture, that from what I can see is nice. I like the windblown look in her hair and she is a pretty girl. I won't lie, I can sometimes be vain but I cannot imagine going into all out hysterics, on national TV mind you over a picture. IT'S JUST A PICTURE...THE WORLD IS NOT OVER. It's not a photo of her in a bathing suit which while she probably would have looked fine in that too, I could understand more if it were. As women we are scrutinized by every little flaw and usually we are our own worst enemies. This is just of her face, and it's pretty.

Am I missing something here?

My next example is what prompted this blog today. I was on my way to drop Makily off at school and was listening to the radio. They were talking about this video on youtube and they even played the audio of it. I found myself hysterically laughing at just the audio on the radio. Surely this was a joke, no one is THIS much of a lunatic. Of course I had to find it as soon as I got home and I laughed while watching it then too.

****WARNING BAD LANGUAGE AND PROFANITIES USED IN THIS VIDEO*****


While the logical part of me realizes that this person is probably only half serious and that most likely he did such an extreme video to get attention (which unfortunately by blogging about it I am giving it to him). What concerns me is that there is a piece of him that is truly heartbroken by the fact that people are making fun of Britney. Britney is not a hero and has never been. She is just is a pop star, a human being that puts her pants on one leg at a time just like you and me....that's it.
For the record I do not like or dislike Britney, I think she is beautiful and those that are calling her fat are crazy and are also the reason there are so many teenage girls with eating disorders today.

This guy is so passionate about Britney Spears having people talk about her bad MTV VMA performance.

WHY NOT BE PASSIONATE ABOUT SOMETHING THAT MATTERS? Your hysterical over a pop star that you don't even know. In fact most of the population DOES NOT know her personally.

Which leads me to the next person I think is put on a pedestal...for reasons that I cannott
figure out.

Paris Hilton.

*sigh*

Much like with Britney I don't like or dislike Paris. I don't know her. I was APPALLED when I heard about this petition to keep her out of jail when she was caught driving drunk...NOT ONCE BUT TWICE! I realize this is old news but it goes along with my blog today. While a part of me can understand why some (teenagers) would put Britney Spears on a pedestal because she is a pop star, I DON'T get why they do this with Miss Hilton. WHAT HAS SHE DONE!? Her Daddy is Mr. Hilton. uhm...okay!? She says "That's hot" and somehow this makes her a person that should be excused when driving drunk...TWICE!? How can people really think this is acceptable!?
I wonder if she had killed someone if people would still be backing her up saying "keep her out of jail for her honest mistake". An honest mistake is putting on one black shoe and one navy shoe in the morning or forgetting your name tag on the way to work.

DRUNK DRIVING IS NOT AN HONEST MISTAKE!




Several months ago I was watching "The Next Pussycat Doll". (yes I love reality TV even though a lot of times it annoys me) Robin Antin was getting ready to cut one of the girls. She said something SO SERIOUSLY that I couldn't help but laugh at her.

Her words:

"This is one of the hardest things I have ever had to do in my life."

WHAT!?

One of the hardest things she has ever had to do IN HER ENTIRE LIFE was to choose The Next Pussycat Doll!?!?

ARE YOU KIDDING ME!?

All the energy that is being wasted by filing petitions and crying over pop stars could really be put to good use. I am sure not one of these people have stepped foot into a PICU or into a Children's Hospital. They have never walked a cancer unit and seen tiny bald headed children with tubes and wires hooked up to them everywhere. Chances are they have never seen a disabled child struggle just to eat or breathe.

To me THOSE ARE THE TRUE HERO'S. These children change lives....TRULY change lives. They are the innocent ones that God has sent here to change the world, not Britney, not Paris.

This is Maia.

Maia has a VERY SPECIAL place in my heart and ALWAYS will. Maia is the FIRST child (other than Makily) that I ever saw with Emanuel Syndrome. Her mommy Stephanie and I have become VERY good friends. Maia has many of the same problems Makily has. BECAUSE of Maia, Stephanie started a support group for parents of children with chromosome 22 disorders. When the doctors told Stephanie there was no one else she refused to accept that. She searched, scoured and was determined to find others. She did. Now there are over 160 families that can come online and know that we are not alone. That there IS SOMEONE else out there. When I first had Makily and they told me there was no one else, Maia was my shred of hope when I had none. This picture of Maia brings back so many memories for me because it is the exact picture of her I saw when I first found Stephanie. Maia is one of my hero's.


This is Luke

The Story of Baby Luke

This is Luke, he has CMS (congenital myasthenic syndrome). His parents went 18 months without knowing what was wrong with their baby. Luke suffers from respiratory issues, feeding problems and low muscle tone. He spent a long time in the NICU. Thankfully since being diagnosed little Luke is getting treatment and he is doing AMAZING. He will need medicine all of his life and has to work twice as hard maybe harder to do the simplest of things. He does it though because he is strong and determined. Don't feel sorry for Luke, LEARN FROM HIM, be thankful that you and your children can walk, talk and breathe easily. Cherish every milestone.
He is one of my Hero's too.

Of course Makily...my sweet Makily.

How she has saved me time and time again from myself. She has taught me so much in just three years. She is the happiest child I know, she loves without condition and laughs without holding back. I could go on and on about the lives she has touched and changed. Many lives I am sure I don't even know about. Makily has been someone else's glimmer of hope more times that I can count and I continually am amazed by her.

SHE IS MY ULTIMATE HERO.


I will most likely be adding more of the "Hero's" in my life here. I guess since I had Makily I see the world so TERRIBLY different than I did before. I wish that everyone could see these kids the way I do now. I hope in some way I have shred at least a little light on who the true "Hero's" of this world are.


**Disclaimer: I recognize that I look at things differently than most because of the life I live. I am in no way trying to be judgmental here, and deep down I *believe* that I am not the only one that things some of the things I am ranting about are INSANELY PETTY!

Lost in a life jacket.

We have been taking Makily to Wild Waters almost every weekend the last month or so. SHE LOVES IT. The child is a water baby if I ever saw one.

A few weekends ago out of no where they were making it mandatory for ALL kids under a certain height to wear a life vest whether they were with their parents or not. When they told us this rule I was a little annoyed. Makily only has so much strength as it is and putting a life jacket on her was going to make it even more awkward for her. I did it anyway hoping she would get used to it. Well after about 10 minutes in their pool area I realized, she wasn't going for it. It also didn't help that they had no infant sized vests available and we had her in a size that really was too big for her.

So we got out of that pool and went over to the wave pool. It has a zero entry area and we like to sit at the "shoreline" of it with her. Well we get there and they are enforcing the life jacket rule there too.

I almost wanted to cry.

Playing in the water and swimming is one of the very few things Makily ENJOYS doing. She laughs and giggles and is really at peace in the water. Due to all her medical problems and hypotonia she can't just play like a typical child, her body just doesn't work that way. All you special needs parents out there know that when you find something that your kid likes and responds well to, it's AMAZING! I found myself getting sad that we had finally found something that made her sooo happy and now because of their new rule Makily couldn't enjoy herself. I wanted to leave right then and there because I felt like the entire day was ruined. Then I thought "heck no, they are going to make an exception for this kid, SHE DESERVES IT!"

I went up to the lifeguard (who was all of like 16) and said "My child cannot walk, crawl or get away from me, she hates the life jacket and I won't put it back on her, if I promise to sit at the edge here can I please take her in". She told me that I couldn't. It was their new policy. I asked her what I should do then and explained that Makily WAS disabled and she could barely move in the jackets they provided us. She reiterated that SHE HAD TO WEAR it BUT that she could get the manager for me to speak to.

I could feel my inner voice slowly whispering in my ear. The voice that comes from the darkest most negative parts of my brain. It's that voice that speaks to me when something like this is happening, trying to convince me to be sad. I fight these thoughts more times than I like to admit. This time the voice was saying:

"If Makily wasn't disabled you wouldn't have to be fighting about this, she would be running and splashing around right now, why do you even try?"

I quickly refused to listen to this little voice in my head and was determined to have a good day and be positive.

The manager came and I explained our story once again for him. I used lots of BIG MEDICAL WORDS so as to make myself sound smarter than I really am in the hopes that this would somehow intimidate him. Ha Ha. I told him Makily couldn't walk or crawl and had hypotonia which made it almost impossible for her to move with this huge jacket on that went all the way past her ears. Seriously all you could see was her big cheeks all squished up and two little piggy tails sticking out the top of this thing. He was very nice and explained that A DIFFERENT water park in CA had 9 drownings this season and so they had initiated this rule in Ocala (don't ask me why). I told him I understood but it didn't work for us. He agreed and said that since our case was "extreme" he would let us take her in without it, as long as I held onto the life jacket.

I was elated!

So Makily, Allen and I sat at the edge of the water playing "splishy splash". She laughed and giggled, I kept the toddler life jacket hooked around my arm.

It's amazing the things I will do and complain about now for this kid.

**Disclaimer: I do not have schizophrenia and I don't actually hear voices.**

The Blue Lemon.

That is the name we have not so lovingly dubbed the van.

If you remember from our SKYLINE MOTOR WORKS LLC aka McCoy Auto Sales of Orlando Sold us a Lemon entry the van was still having problems even after we had paid over $300 to repair it. At the end of that entry I have a video of what it was doing. Well come to find out the radiator had a hole in it. Yes that's right. Which is why when every time we got out of it it would leak water and steam everywhere.

NICE.

It's a the shop now. It needs a new radiator.

LOVELY.

At least another $350+.

BEAUTIFUL.

I have not heard one peep from the people that sold it to us. Not a response from the emails, letters or phone calls and I don't expect to either. I don't expect to either.

ENOUGH ABOUT THEM.....

We are still in the process of getting our foster parent license. We have a home study set up in two weeks. I believe this will be the last home study. After that all that is left is our doctors appts (which are scheduled for this month) and our health dept inspection. I can't believe we are this close! How exciting!!!

Just a few funnies.....

These graphics are for Andrea as I couldnt post them in the comments of her blog. I will try to be back later though and blog more.

First one Andrea, this one is the shirt I went out in and couldnt figure out why everyone was staring at me!




**for those of you that can't quite see the shirt it reads:

"Mr. Potato Head picks his nose."

for those that know us personally, Allen stole this shirt from the INSANE T.J. I went to Walmart in this shirt at midnight one night not realizing I was wearing it. I just couldnt quite figure out why everyone was staring at me.

And my all time favorite graphic that TOTALLY describes your "worst pic ever" pic



Those of you that want to know the story behind these pics....see Andrea's blog entitled:

"What the chub part two"

Change

I have been thinking so much about all the changes that have happened in my life since Makily was born. I had no idea the ways in which my life would change that Thursday night when I laid in bed laboring and trying to give birth to this kid.

My baby girl is starting Developmental Pre-K on Wednesday.

There have been many times in the past three years of my life that I NEVER thought we would make it here. I recall the awful four weeks Makily and I spent in Shands when she was six months old. That was one of the worst times of my life and I hated every moment of living in that nightmare day in and day out. It seemed like each day was worse than the last and I thought we would never leave that place. I could tell story after story of all the terrible things that went on in that hospital for us during that time. I will spare you with just this one. Basically to add some humor to this particular entry.

So during our long four weeks stay (and while I realize that four weeks to some ISN'T that long, IT IS considering all she went in for was a leaking G-tube) we were moved around from room to room to room. Sometimes in the middle of the night. One of our moves was particularly strange. Makily was kind of in the "step down" phase...not PICU worthy but also not stable enough to just be in "no man's land"....errrr uhmmmmm I mean the regular Peds floor. So we were put in "special care step down". It's a large room with TINY cubbies for each patient. When I say tiny I MEAN TINY. There literally was enough room for Makily's crib and my sleep chair butted RIGHT UP next to it. I called it our "hole". For some strange unknown reason they had a 23 year old woman in the bed next to us. She was a psych patient. I told you we had great luck. She talked CONSTANTLY. Most of what she said I could not understand, it was alot of gibberish most times. The nurse in there apologized to me almost hourly, which was a change because usually when there were mistakes made or inconveniences you were looked at as though you were a bother....ya know "how dare you complain that your six month old is in with a 23 year old crazy lady". We couldn't sleep, I couldn't think straight. I decided one night to get a audio tape of this woman. I couldn't resist and I knew no one would ever believe me that we were SERIOUSLY put in with a 23 year old psych patient. I mean we were on the PEDIATRIC SPECIAL CARE FLOOR.

Listen closely to the chatting in the background, remember this was ALL DAY every day!



Now on the other hand there were more days there that were not humorous in any way, although I tried desperately to find humor...somewhere. So many days I sat in the PICU with Makily, tubes down her throat, in her stomach and up her nose. I can still smell the hospital tape that was all over her, the soap I used every day and the sour smell of her little hand when her IV would blow and they would unwrap it and place another. I remember vividly the frustration of trying to hold a hypotonic baby with tubes, wires, and bandages all over her without pulling anything or hurting her. It just all seemed so unreal. I kept thinking "This only happens to other people........I guess I am one of them now".



Some memories just never seem to fade to gray, these memories for me are as vivid as the day they happened.

I remember this time because it was one of my darkest with Makily. It also a huge bonding period for her and I. My motherly instincts had FINALLY seemed to kick in the night they were letting her WRITHE in pain in the bed and did nothing. I felt like a part of me had awoken and that even though I didn't know what the future was going to be like for her or I, that I would be damned if they were gonna let my baby lie in bed in agony because they were too busy or simply didn't give a darn.

So I look back at where we started, where we have been and where we are going and I am in awe.

In awe of Makily.

She is not the child I dreamed of having,
in fact she isn't even the child I wanted when she was born.

She is the child I NEEDED, the child I was destined by God to have and the child that has changed me in ways I never imagined a child could.

She is the child that has taught me how to love UNCONDITIONALLY, to look past disabilities, to see that every special needs child is truly a miracle. It's all I can do NOT to approach a mother in the store pushing her child's wheelchair. I immediately feel a connection there, an unspoken one that you can truly only know if you walk that road.

I see kids with trach's, g tubes, feeding pumps, tight muscles, scars and oxygen and I am in awe of them too. These children have a gift of showing other's what is TRULY important in life without using the spoken word. What's sad is that so many people (me included at least the "me" before Makily) can't look beyond all the medical equipment, disabilities and struggles and see what is behind all of that.



These children have the strength of Goliath and the patience of Job. I know some adults would be frustrated with the day in and day out therapies and treatments. Many would just give up. Not these children, they continue to fight to survive because to many of them, it's all they have ever known. Makily does not know that eating is supposed to be easy for her. She doesn't realize that walking should have been something she started doing EASILY over two years ago. So she continues to work hard during therapy, standing on her two now chunky legs until they begin to shake because she is trying so damn hard.

I am in awe that after all she has struggled and suffered through that she still manages to laugh and giggle at the small things. That she can go from hysterically crying from a terribly painful procedure one minute to hugging and snuggling me while smiling the next. That she wants NOTHING from ANYONE except to be loved. That's all, she just wants to be loved.

I am not sure how much more perfect her spirit could be.

Money and material things will never matter to her, she won't complain to me when she is older that she MUST have the newest Polly Pocket or that she hates me because I won't get her the cell phone she is demanding. She will always be my baby.

Although her worldly body has failed her time and time again...and most likely will continue to, Makily will always be a perfect, innocent soul. What God has given her this world cannot ruin.

And for that, I am forever grateful.

Our luck just never runs out.

*****UPDATED AT THE END WITH ANOTHER VIDEO 8-17-07 AT 6.55PM!*****

So as promised here is the entire story with names, VIDEO and details. I intend on sharing this EVERYWHERE on the internet that I can find, emailing and calling the Orlando Sentinal and Ocala Star Banner and also contacting channel 2 news. But you can read it here first blog friends.

Here is there contact information and address!
(407) 872-8559
906 W Michigan St
Orlando, FL 32805
Email: skylinemotorsgtr@yahoo.com
The owner's name is Mohammed


We needed a van.

Why?

Makily is BIG now and we had a two door Ford Explorer. It was getting harder and harder to get her in and out of the truck. Due to Allen's job he is only here a few days a week which means I do the majority of getting her in and out. We have a pediatric wheelchair and stroller, we like to bring both to use according to where or what we are doing. As many of you know we are going to start fostering soon. We are in the middle of the licensing process and so we just needed something bigger and with more doors.

We sold the Explorer for $3500. We could not afford to spend much more than that.

Allen and I didn't need anything brand new. Just something that we could get around in with lots of room, working air conditioning and that was safe and reliable.

We looked in Ocala and the only things we found were either way too high in mileage (meaning 150K or more) or totally out of our price range. We cannot afford a car payment. As long as poor Allen is working like a dog and I am staying home to care for Makily I refuse to add more pressure or work on him to afford a car payment just so I can drive something newer or better.

I was driving our Cavalier while we were looking for a van. Makily does not do well in the Cavalier because the windows are NOT tinted and the a/c ONLY works on low. It is hot here and she actually retched a few times from getting too hot in the Cavalier. We were told last year when she had that NASTY seizure that we should not let Makily get too hot, it could trigger a seizure.

I look on Autotrader.com and found a pretty good deal, it was listed with "McCoy Auto" in Orlando. It was a Pontiac Montana with about 100k miles. It was $3495. We could afford this. Makily had a neuro appt the next day and so we figured we would look at it then.

When we went to see the van I explained to the salesman that we were buying a van because we have a daughter with a wheelchair and we are going to start fostering. We needed something reliable with air. He knew our situation... very well. Allen test drove it. We liked it BUT the power locks and power windows were not working right. I was concerned about the locks for child safety reasons. There were other very minor things and when I mentioned them the salesman IMMEDIATELY said "We can fix that". So with the agreement in writing that those things would be fixed we gave the guy our $3500. He said we could pick it up in 2-3 days.

He called me a few days later and said it would be TWO weeks as they were waiting on parts. This didn't sit well with me. I had other things to worry about though, Makily's heart catheterization was coming up and so I just said fine.

My sister and I went to pick up the van on June 30, 2007. When I got there the power locks were not working. The other minor things were done but I was still upset about the locks, as it was in the contract that they would fix it. The van smelled funny too and I had been told they were going to detail and shampoo it so I wasn't happy about that. I called Allen and he said "Just take the van, we will take care of the locks later, we need to get it so you have something that isn't so hot for Makily to ride in".

I was not shy about showing that I was angry. They said that I could get the locks fixed by my mechanic and that it would cost about $30. I laughed and said "yeah right", he said well maybe $50 but that's it. He said if we had it fixed to save our receipt and he would reimburse us for it.

I still didn't feel right but I agreed anyway.

This is the last time I don't listen to my gut.

I had him put it in writing about the door locks and paid the remaining $600ish for tax, tag, title and "dealer fees" and left.

On the way home I notice the "add coolant" light came on. I told Allen when he got home the next morning. He opened up the radiator and it was full of rust (see video). I went and bought radiator flush, expensive coolant and we flushed out the whole system according to the instructions on the "flush container". I even used distilled water because the auto parts place said it was better.

The add coolant light went off and it seemed to be okay, we fixed it for less than $40 ourselves...no big deal...or so I thought.

Two days later on July 4th the power window on the driver side stopped rolling back up (also in video).

Two days after that on July 6th Makily and I were driving home at 10 pm. The "add coolant" light came on, the engine started stalling and when I looked down at the dash I saw the temperature gauge was all the way up.

The van overheated after we had owned it a total of seven days. I WAS LIVID.


Here is the video of the window problem and the radiator problem:

Make photo slide shows at www.OneTrueMedia.com

I called the car lot owner the next day and we told him EVERYTHING. He asked why I hadn't called him the day after we bought it when the "add coolant" light came on. I told him that we had flushed out the radiator ourselves, the "add coolant" light went off and it ran fine so we didn't think it was a big deal....until everything else started falling apart on it.

He said that his mechanics look over all the vehicles. I then asked him to explain the RUSTED radiator and he of course couldn't. He just kept saying "How do I know you haven't been driving it a week with no water in it".

WHAT!?!?!?!?!?!?!?


If his mechanic TRULY looked over the van, he would have found that the radiator was rusted. Rust does not buildup in a radiator like THIS in just one week. He was crazy for even suggesting that.

He also would have ensured that the van had all the appropriate fluids in it WHICH IT DIDN'T because the add coolant light came on THE DAY I BOUGHT IT! He also told me that we put the "wrong water" in the van. That GM vehicles only take "GM water" and that I just need to go to the auto parts store and ask for it. I told him I HAD gone to the auto parts store AND ASKED them and they suggested distilled. No one I have asked has ever heard of "special GM water".

I told him I wanted my money back and that he could take the van. He REFUSED to do this. I was very upset and I told him that they HAD to know about the radiator and he just kept saying "My mechanic checks over all the cars". I continually asked him if he looked in the radiator or not and he would not answer me. Finally he said "well I am sure my mechanic did".

WHATEVER.

I told him that I had MORE IMPORTANT things to deal with that I did not have time OR MONEY to run around trying to get the van fixed. I understand it's a used vehicle but we only had a week before it overheated! Obviously the problem that made it overheat was the same problem that caused the "add coolant" issue...WHICH HAPPENED WHEN I WAS DRIVING IT HOME FROM THEIR LOT!!

In the end he said to "take it to your mechanic and get receipts and we will talk".

We took it in and the mechanic and he found a leak. It was going to be about $350-500 to fix.

Makily's heart cath was coming up and so we did not have the time or money to deal with it. So we had to put water and coolant in it every time we drove it. Lovely.

We went to Orlando for Makily's heart cath. (SEE VIDEO) It was here that my parents discovered our brake lights weren't working when they were driving behind us. We had family members follow us while there just in case something else went wrong with our lemon.

Makily's Heart Cath:

Make an on-line slideshow at www.OneTrueMedia.com

After Makily's cath was all done we took it in to be fixed. In total he found three leaks that led all the way to the intake manifold. It would be over $500 to replace this. He told me he could try something to seal it with and that would save money. Luckily the "seal" worked and we have a mechanic that is HONEST and WON'T RIP US OFF! THANKS DAVE WE LOVE YOU!

I emailed the owner Mohammed last Monday 8-6 with the estimates. He never replied. I tried faxing over the estimates on Friday 8-10 and the fax number was not working. I even called them to ensure I had the right number and I did.

On Monday 8-13 I emailed, faxed and mailed the receipts to him. When I called again about the fax machine on Monday I asked whom I was speaking with. I was told it was Mohammed, which is who I have been dealing with. I reminded him of who I was and told him that I was trying to fax him the receipts and it was not working. He then claimed to have never spoken to me. I said "isnt this Mohammed?" He said "um, this is the other Mohammed". I asked how many Mohammed's worked there and he said two...umm okay maybe.

The fax did go through on Monday, I mailed the receipts certified mail with return receipt and I have yet to hear anything from them.

I realize they do not and have not intended on paying ANYTHING on the repairs of the van.

They basically ripped Allen and I off, they could care less that our child was having A HEART CATHETERIZATION during all of this. They knew we had a special needs kid, they knew our situation and they sold us a lemon anyway. I will never understand how people can do this to others and sleep at night.

Today the "add coolant" light keeps coming on and going off. Oh and the "gas" light came on although I have more than half a tank.

I wonder what else is going to happen and what will fall off of the van next!?

So I hope that this blog somehow saves someone else from buying a lemon from these CROOKS. SKYLINE MOTORS WORKS LLC aka MCCOY AUTO of Orlando Florida are liars. I found a few people on ebay that have had VERY SIMILAR experiences with these people.

Their ebay name is "skylinemotorsgtr".

DO NOT EVER BUY FROM THEM.

If they can sell us a lemon KNOWING our circumstances then they will sell ANYONE, ANYTHING for a buck.

SHAME ON YOU MOHAMMED AND EVERYONE ELSE THAT DEALT WITH US AT SKYLINE MOTOR WORKS LLC aka McCoy Auto.


*******UPDATE AT 6:55 PM 8-17-07*****

So we took Makily to Neuro in Orlando today. The van drove GREAT, not a problem at all. IN FACT when we drove up at the house, Allen said "ya know the van drove well today, hopefully all the problems with it are behind us".

NOT!

When we got out.....THIS is what we found!

Make video montages at www.OneTrueMedia.com

WHAT NEXT!?

Where are all the shopping carts?

Today I took Makily shopping. She does need new clothes right now, this child has gone through a growth spurt and has jumped into size 2T and 3T clothes. It's INSANE!

We get to K-Mart and I decide I am NOT taking Makily's stroller or Kid Kart in. It's IMPOSSIBLE to shop this way. I haven't mastered pushing a stroller/wheelchair and buggy (I sometimes refer to a shopping cart as a buggy) at the same time and I don't imagine I ever will. Makily was in a particularly good mood and WIDE awake so I figured I would just carry her into the store and have her sit in the buggy.

So, I get out her diaper bag full of all her stuff, then I get her feeding pump bag and throw them both over my shoulder. Next I get all 30 pounds of Makily out and I go into the store. Now remember we are in Florida and it's SO HOT right now and the humidity is enough to take your breath away. By the time I get in the store I am sweating.

I go to get a buggy and I was less than thrilled about what I had to choose from.

There were but three lonely, decrepit buggies.


Cart number one: Rusty....I could have cared less but it was rusted in the area Makily would be sitting and that aint gonna work.

Cart number two: Had no "seat plate" in the kid seat part. So it would have just been Makily sitting on metal...that's another BIG no go.

Cart number three: The seat belt strap is broken on both sides. Now there is an accident waiting to happen!

I stand there and wait to see if anyone is bringing a cart back...no one is coming.

So I go to the "Customer Service" desk (and I did just laugh as I typed that). I ask where the rest of the buggies are. The lady looks up from her work and says "there are some over there". I explained the above choices and told her none of those would work for me. Her response?

"Well that's all there is, the rest are being used". She then went back to her paper work.

Now I have been to K-Mart before and let me say, I have never been there when they only had three available carts to shop with. I mean MAYBE black Friday but today? No way.

I stood there for a minute wondering what to say. I came up with:

"Well ugh, how am I going to shop like this?"

She says "I don't know what to tell you ma'am".....and again goes back to her paper work.

So I say "Can ya call a manager over?"

She says "oh sure."

The manager comes and I explain the situation. She kinda looks at me like I am crazy and then looks at Makily. I am sure she was wondering why I didn't just put her down and make her walk. I abruptly said "She can't walk, so I have to have a buggy, I can't shop like this."

REMEMBER now, this entire time I am holding 30 pounds of Makily, 5 pounds of diaper bag and another 5 pounds of feeding pump and formula.

The manager then says "Oh I will get you a buggy." She goes to one of the check outs and steals a buggy from someone that was FINALLY leaving.

I just don't understand how their customer service desk just brushed me off. I think it's RIDICULOUS that in order to get a cart that my DISABLED three year old could sit in, I had to call the manager.

CUSTOMER SERVICE THESE DAYS STINKS!

On the flip side of that I had a good experience while I was there.

I had forgotten Makily's needles and syringes for her Robinul (aka slobber medication). She uses the injectable form of this for MANY reasons (right Andrea? LOL) but I just put it through the G tube. ANYWAY...I ran out of it yesterday so she didnt have her morning dose. I picked up the Robinul before I went to K-Mart. Once we got there and I FINALLY got Makily into the cart i realize I have no way to get it out of the bottle. I know that unless you have some kind of script for injectable meds most pharmacies won't sell you needles and syringes. I thought I would give it a shot though. I knew since I don't fill the script with K-Mart most likely they wouldn't sell me one. I thought I would ask anyway.

So I sheepishly go up to the pharmacist and say:

"Uhm, Hi, my daughter has a G tube and is on injectable Robinul, we just put it through the G tube. Uhm, anyway I forgot her syringes and needles and I was wondering if I showed you the med, if you could sell me one."

He was SO NICE. He smiled and said "You don't have to show me anything, I can sell you one, what size do you need." I told him and he went to find it. When he came back he fawned over how cute Makily is, handed me the needle and syringe and said "no charge ma'am...have a good day."

This made up for the shopping cart idiots.

We bought a lemon.

Well today really took the cake. There were several times I pondered stripping naked and running around the van screaming while banging a pot with a spoon.

So Allen and I bought a van a little over a month ago. We don't have a lot of money and can't afford a car payment so basically we could only afford what we got for the truck we sold.

We find a van in Orlando, test drive it the whole nine yards. There were a few things I didnt like about it. As soon as I mentioned them the salesman immediately said "we can fix that". Long story short, we agreed to buy the van under the condition that a few things were fixed. Basically the power windows and locks and a few other minor things. They told us it would take 2-3 days. I said fine we can pick it up then.

Two weeks went by before it was ready.

I was not thrilled with the length of time it took, but they said they were waiting on parts. My sister and I go to pick up the van as Allen was on the road. When I got there the power locks were not working right. There was that "tugging" in my head saying "no deal, just leave". I called Allen and we rambled back and forth. Makily's heart cath was coming up the following weekend and we basically just wanted to have a vehicle that wasnt HOT AS HADES to drive her in. I expressed my anger about the door locks and the salesman told me we could have it fixed at our own mechanic and to send them the bill they will cover it. I made sure to get this in writing and so we bought the van.

Well our fears about buying the van came true. The day after I brought it home the "add coolant" light came on. Allen checked the radiator and discovered it had rust in it....lots of rust. I actually have a video of it. ANYWAY....Allen flushed out the radiator, we added coolant and water and things seemed okay. Three days later the driver side passenger window stopped working. Two days after that it overheated on the way back to my house at 10 pm with Makily in the van.

I called the car lot and explained everything the next morning. Basically he said "how do I know you haven't been driving it for a week with no water?" So I guess they don't make it a point to make sure all their vehicles have appropriate fluids in them before they go off the lot. He claims that all their vehicles are checked out by a mechanic and I asked him how they "overlooked" the rusted out radiator. He didnt have an answer for that.

After much crying he REFUSED to take the van back (I am not surprised)but said to get an estimate on all the repairs and then we would "talk".

This was ALL THE WEEK BEFORE MAKILYS HEART CATH....like I had the time or patience to deal with ANY OF THIS.

So we took the van to get looked at. For the leaking coolant problem and to fix the brake lights that werent working (did I mention that?) it was $325 and the guy was SUPER nice and fixed it the cheapest way he knew how.

We picked the van up today and left soon after to take Makily to Orlando to see the Neurologist. We stopped about half way there to get a snack and when we did the "add coolant" light came on.

I wanted to scream.

Allen got out and the coolant was leaking like a faucet onto the pavement. When he opened the hood it was steaming and spurting water.

At this point I said many profanities. I sounded alot like a sailor and for that God I am sorry.

After about 15 minutes of Allen and I exchanging words, we decided we would have it towed back to the shop in Ocala and have my brother in law come pick us up.

I go to get Makily out of the van, as it's blazing hot and figured we would go inside to cool off, her cheeks are already getting red.

Are you ready?

I unstrap her car seat straps, and

HER SHIRT WAS DRENCHED AND HER G TUBE WAS LEAKING AGAIN.

For those of you who have been following Makily's Caringbridge Page for the last week or so know the significance of this.

I almost WENT CRAZY right then and there. I mean seriously the timing is just uncanny. Our van is blowing up half way to Orlando and now my kid's tummy is leaking like a faucet again.

SOMEONE SHOOT ME NOW.

We go inside the rest area and it's HOT in there. So my poor kid is hot as heck and finally just zonks out. Here she is:



After all was said and done, it was just another hose that needed repair. It is done and the van seems to be running okay for now.

I sent an email to the car lot with an estimate of all the repairs. We will see what they say. If they do not provide us with some kind of compensation I plan on plastering their name and how they sold us a lemon ALL OVER the internet, along with the video documentation we have and everything else.

What's sad is when we initially went to look at the van, I explained to the sales man that we had a special needs child with a wheelchair, which is why we were looking for something roomier. I told him we drive back and forth to Orlando to see her specialists. We are also going to start fostering soon and so we need something VERY safe and reliable.

So knowing this they sold us a van that has all these problems. I just don't understand how people do these things and then sleep at night.

Before you ask I searched lemon laws in Florida. Unfortunately there is ONLY a lemon law for people that buy NEW vehicles. So is you buy something used, you are basically screwed.

Stuff about me for ANDREA! LOVE YOU GIRL!

I was tagged by my friend Andrea (Luke's Mommy) to do this...here are the rules!

The Rules:1. I have to post these rules before I give you the facts.2. Each player starts with eight random facts/habits about themselves.3. People who are tagged need to write their own blog (about their eight things) and post these rules. (**if you’re a non-blogger, you can email them!)4. At the end of your blog, you need to choose eight people to get tagged and list their names.5. Don’t forget to leave them a comment telling them they’re tagged, and to read your blog.


My eight random facts and/or habits:

1. I am a terrible driver. I drive over curbs a lot to the point that Allen used to called me "curby". I have ran into my own vehicle...in my own driveway....more than once. Then yelled at Allen for it. He shouldn't have parked behind me! LOLOL I recently hit a bucket in Orlando on I-4. In my defense though it was either the bucket or another car...I chose the bucket. It tore the mirror off the passenger side of the truck (scared said passenger to death too). This was easily repaired!

2. I am not the best housekeeper. Okay, let me rephrase that. I suck at housekeeping. I am getting better in my old age (30). Once I have thoroughly cleaned something though, if you come behind me and mess it up, expect the "wrath of Trish". (at least if you live in my house...that means you Allen!)

3. I know I have mentioned this before in an older blog but I will expand on it more here. I enjoy watching TV on mute. I am not sure why, usually I like it better with the closed captioning on. It drives Allen insane. Sometimes I don't even realize I have done it until Allen says "OMG PLEASE TURN THE SOUND ON, I wanna watch TV, not read it!!"

4. My favorite time of day to go to Walmart is at midnight. There are less people there and the parking isnt so awful. It is annoying though that they are restocking and waxing the floors so you can't get to certain things. I remember in my single days going to Walmart in my pj's...(Kristy remember the phone cord computer line thingie......"i have to check your receipt ma'am!" LOL)

5. I do believe I have a flashing sign on my head that says "talk to me, tell me your life story". This happens to me a lot. A pure stranger will come up and start telling me all about their family, kids, husband, friends etc etc. Most of the time I stand there politely and listen because I have no idea what to do in that situation!

6. I leave the TV on all night. It became a habit long ago and I can't fall asleep without it most nights. I love Nick at Night and watch Roseanne, Fresh Prince and the Cosby's while I drift off to sleep. I used to watch Golden Girls EVERY NIGHT but they don't come on anymore! I love all those 80's and 90's shows.

7. I don't answer my front door for anyone unless I know them or it's the UPS or mail lady. Many reasons for this. One of which is because Makily and I are here alone at times and you never know what psycho is running around ringing door bells.

Another is I can't STAND door to door sales people. Drives me CRAZY. It irritates me that they come to my home where I am usually busy doing something, then to top that off they take up my time and force me to listen to some sales pitch for something that is overpriced and that I can't afford. I don't have the heart to slam the door in their face so I stand there and listen which aggravates me.

At one time I also had a terrible problem with a lady that was a certain religion that would NOT leave me alone. I had advised her that we were Christians and had our own home church but she would not listen. This was around the time when Makily was very little and I was VERY crazy. She always rang the bell RIGHT as I had gotten Makily to sleep and woke her up...or she came when I was in the middle of a tube feed that I had been working on for an hour. Even after explaining our circumstances she still kept coming.

8. When Allen is out of town for work, I have a hard time sleeping by myself (although when he is home he snores like a frieght train). It's gotten harder since we moved Makily into her own room. I find myself sleeping on the floor in her room more often then I sleep in my bed.