Tragic Story of a CRAZY LADY and a set of fireplace doors.

I will start this post off by reminding myself that in the grand scheme of things, THIS IS NOT really a big deal.

It's just INCREDIBLY frustrating.

Patience Lord...I know patience right!?

At our last home study we were told we had to have doors installed on our fireplace. I was a little miffed because we had three home studies before that one and no one had EVER mentioned this requirement. We would have had it done LONG ago had we known.

On January 9th, I went to Lowe's. I ordered and paid for a set of glass fireplace doors. The man asked me the measurements of our fireplace and then told me to pick out the ones I wanted. He didn't ask me any other questions about our fireplace and I didn't know anything else to tell as I have never done this before.


When I ordered the doors the man told me they would be in on Jan 23rd...maybe even sooner.

I got a call last weekend saying that they are on back order and OF COURSE no one can tell me how long. Mind you this was FOUR DAYS before they were supposed to arrive. I explained to them that this is the LAST thing standing in the way of our foster parent license and that I was VERY UPSET that I was not told they were on back order before then. They told me I would get a call on Monday to see what could be done (it was Saturday and the manufacturer is of COURSE closed).

Monday I received a call saying they were NOT on back order and would be here by Friday.

I was ecstatic.

Thursday I called to ensure everything was still in order for them to arrive Friday. I spoke with two people and after MUCH confusion was told that

THE DOORS WERE IN...A DAY EARLY TOO!

I decided that I did not want to wait for Allen to get home to pick them up. I had to go get them MYSELF. I couldn't be at ease until I had them in my house!

I picked them up and was incredibly pleased with myself. I called our licensing specialist and told her they would be installed this weekend. She was very pleased!

THANK THE LORD WE ARE DONE......

or so I thought.

*sigh*

This morning Allen opens the box. Starts reading the directions....sighs and then says"

HIM: We can't use these

ME: WHAT? WHY NOT!?

HIM: The instructions say "Do not use or install of prefabricated fireplaces. For use ONLY with masonry fireplaces".

ME: What is the difference and what the heck does that mean?

HIM: Masonry you have concrete that surrounds the fireplace, these attach to that concrete. We have a prefabricated fireplace and there is no concrete to attach this too.

**the top of my head flew off my body**

Allen and I then got into an ugly argument that I won't fully describe here. It was riddled with lots of colorful words. We weren't mad at each other......but hey who else were we going to scream at?

I called Lowe's, spoke with the manager and VERY FIRMLY explained our problem/s with them. He said he "thinks" they just "might" sell the pre-fab doors but for me not to quote him on it.

Gee that made me feel better.

Then he said that since it's Saturday the manufacturer is closed and so they can't find anything out for certain until Monday.

**Of course**

We have called around Ocala today to see if anyone has them, none of the places we have called has answered their phone. I googled "prefab fireplace doors" and have found a few of them but to the tune of over $500.

Lovely.

I also found THIS SITE
that says and I quote:

The Zero-Clearance Fireplace Glass Door Problem A very common problem with these fireplaces are dilapidated or missing Fireplace Glass Doors. Zero-clearance fireplaces manufacturers generally provide a glass door system with the fireplace. However, in an effort to keep the cost down the glass doors are generally not built to last... a long time. Soon the homeowner finds themselves searching for replacement fireplace glass doors, and this isn't always easy. The manufacturer of the fireplace may have gone out of business, or you aren't sure who installed the original fireplace, or you just simply don't know where to start.


I laughed uncontrollably I do think Allen believes I have lost my mind.

So we are going to be taking back the $230 doors that took two weeks to get to Lowe's and are trying to think of SOMETHING we can do to get a "door" on the fireplace. The cheapest I have found at the point are $500 and I am not even sure they are the correct size. Who knows how long it will take to get them to us.

We are kicking around other ideas, such as just buying a fireplace screen (the kind that would normally sit in front of the fireplace with the doors that open) and somehow mount that to the face of the fireplace. Don't know if this will work but we are willing to try.

I also have an email in to a guy that sells them on ebay to see if he has the size we need. Those are MUCH more reasonably priced but again, I don't know if he has what size we need.

My mom and best friend Trish keep saying "There is a reason behind this, maybe the baby you are supposed to have is not born yet or is not in the system so that is why there is the hold up, God knows what he is doing".

I agree and I pray they are right.

I have this horrible negative "evil troll" in my brain that keeps saying

"Maybe this is a sign that you aren't supposed to do this".

I keep telling the troll to shut the heck up.

Will keep you updated.

Shopping in yellow.

Today I went out and shopped for the "foster baby".

I haven't really allowed myself to do much shopping in that department. Mostly because we don't know if we will be getting a boy or a girl...or even how old the baby will be (all we know is under age two).


It was kind of strange shopping for unisex clothes. One reason is that I think it is almost a sin to put a baby girl in anything but pink. Putting a boy in pink well THAT IS A SIN. So shopping for something that a boy or girl could wear was tough. I got lots of yellow. I almost bought purple when I realized Allen has told me SEVERAL times that purple is GIRLY. Okay so sue me for not realizing this on my own.

I felt the "guilt monster" creeping in. I didn't buy anything for Makily and felt horrible for it. I did look for something for her but didn't find anything.

The guilty feelings have been popping in and out since our home study on Friday morning. I keep wondering if I am being fair to Makily. Am I taking away from her? Then I see her playing with my God Children and I realize that we are giving her something too.

The licensing specialist GRILLED me hard on all things surrounding Makily. This was the first time they really focused on that. I knew it was coming but it didnt make it any easier on me. I am proud I got through it without crying though. I got a little choked up when she asked me how Allen helped me through the first six months of Makily's life and the PPD I suffered. Telling her how amazing he was really got me. He really was a rock. I don't know how he did it.

She also asked questions about my being on Effexor for depression. I told her that I am VERY mentally stable (ha ha) and that I do not feel "depressed" 99% of the time. I explained that Allen and I have had almost four years to deal with the Makily's diagnosis and that to us our life is "normal" now. Yes sometimes I get sad for the things Makily won't be able to do but that I feel is normal. Looking back I have come SO FAR since she was first diagnosed. It was just so much to take at once and it was such a DARK, DARK period in my life.

She wanted to know how Makily can be healthy if she has chronic medical conditions. I told her that all of her medical problems have been treated with surgical intervention or are controlled by medications. That she is the healthiest she has ever been in her life. I told her there was NO WAY I would EVER have thought of fostering a year and a half ago. Her health was not as stable and she still needed to have the holes in her heart repaired.

I finally point blank asked her if our having a special needs child was going to hurt our chances to foster. She said no. Then she explained the process from here on out. She types up a nice pretty packet of information on our family from all the paperwork we have filled out and all the interviews we have had with them. It is sent to the State of Florida and they review the material in our packet. If they question ANYTHING it is sent BACK to the licensing specialist and she has to come back to us to get the information. So she said that is why she covered so much about Makily because she did feel that when our packet is reviewed they will ask questions about how we are handling things with her. Once they review it and approve it, the State of Florida sends out ANOTHER licensing specialist to do the LAST HOME STUDY and as long as that person approves us....well then we will be licensed.

We really are close.

It's starting to feel real.

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.

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.