Sleeping Beauty

UPDATE ON MARY:

We went to the doctor today and she did more blood-work, pricked her finger for another diabetes check, took another urinalysis, and looked her over. If you aren't aware, Mary has been sleeping anywhere from 14/16+ hours a day off and on for a little more than a week now. She was also unable to stay out of the restroom for very long before he bladder had her running again.

She had a urinalysis done a week ago and the stick test came back clean, so they sent it off for culture but it never came back so the doctor assumed that something had gone wrong or they had lost it. o.O Really builds my trust in them, lemme tell ya.

So even though her bathroom usage is easing up a bit and she was able to stay awake longer today, I wanted her to be rechecked before I sent her back to school. And she needed a new excuse that states that she needs to be allowed to rest and use the restroom as needed.

The doctor took blood-work today to check her for Mono and to check her Thyroid function. She is also checking her kidneys and her liver numbers, her electrolytes, etc. So hopefully we will have all of these labs back by the weekend.

As for now, she is in the restroom again, but she's humming, lol, so that means that she's somewhat energetic today and that's great! :)

Marian

Mary has been out of school all week this week. Something is happening with her kidneys/bladder. When she's awake, she has to be near a bathroom and able to go when she needs to. She has small bursts of energy here and there but they don't last long before she's sitting down and resting, doing things like coloring, playing on her phone or drawing. She's been staying with me at work where I can keep an eye on her, but as soon as she is in the car, she's asleep. She didn't even eat dinner last night after church (which she insisted she be at), she just came home and went to bed.

Her face is red with the little white bumps all over them and her cheeks are warm to the touch. The doctor did a urinalysis and it came back normal so they sent it off for culture. If that comes back normal as well, we have to look at the possibility of it being her JA attacking her kidneys and bladder. With all of the other signs of a relapse, I am guessing that's a big possibility. So for now, she stays with me and we go to work. :)

Please keep her in your prayers. <3

ADHD Evaluation (For Meds)

Kat had her ADHD (meds) consultation today. It was the worst experience of my life with the babies so far. Aiden was screaming at me and Kat in the waiting room, he was hitting us and kicking me too. He was begging for another lady's food. He was just not very well behaved... not even in the slightest. Kat was throwing fits, she was screaming at me, she was pushing other people's kids, small kids, away from the toy table in the waiting room. They actually stopped the entire waiting room in its tracks more than once. It was awful. By the time that we got back to the room, Aiden was now full on. He was screaming at me, screaming in general, hitting me and Kat still, but now he was also talking meanly to me. Kat was too. They wouldn't listen to me, so when I kept telling them to stop running around the room and they didn't, they bumped into each other and Aiden's lip got busted. The nurse actually raised her voice to them at this point and told them had they listened to me, it wouldn't have happened. When she left the room, my nerves had just had it. I just broke down. There is no happy ending to this day. That's not what I am writing this to say, I promise. No, instead, I am writing this to say that this is real and this is a typical day for me with two ADHD children. This is my life. When the doctor finally got to us (it had been 45 minutes in the room alone, but it felt like 3 hours), he started asking me the standard ADHD diagnostic questions but he didn't have to ask too many, he just had to observe. Kat wouldn't be still, she kept hitting and kicking the table and humming/singing loudly. Aiden was not only yelling over me and the doctor's conversation, he was actually standing in the chair and JUMPING to the floor. It didn't matter that I stopped him, twice...no, he didn't care. He did it again 2 more times. The doctors eyes were wide in disbelief. But what do I do? They don't listen to me and I can't spank them in public. He just said to me, "Yeah, they have ADHD, at the least." I was mortified. People see this behavior and they automatically look at the parent as if it's the parents fault, it's just bad parenting, a lack of discipline, or the kid is just spoiled rotten. Nothing could be further from the truth. My kids are disciplined, they have and know the consequences of their actions, they just can't stop themselves. And not every bad behavior iis ADHD related, they do just have "bad kid" days at times, but I know the difference between having a bad day and having an episode. Today was an episode. Unfortunately, knowing that doesn't make handling it any easier. Before we even left for the doctor's appointment today, they were in their bedroom stacking their toy boxes and jumping from them to the bed. They know it's against rules and they know they get hurt almost every time they do it, but they do it anyway. This is where the impulsive behavior comes in, as well as the lack of concern for danger. The only positives from the day were the doctor talking to Kat and realizing that everything I already recognize is indeed there. So confirmation. And he put Aiden on Melatonin!!! We will hopefully be sleeping tonight! But the best thing was that after talking to her he said to me that he wants her IQ tested. He said she is VERY smart (which we already knew) and he wants to know how she does once she's able to apply herself without the chaos in her head. But he also wants her tested for Autism Spectrum. I told him shes been on the wait list for testing for almost a year and he said he will see if he can do something to move her up. So we shall see. I already know she's on the spectrum, I suspect Asperger's to be honest. Hopefully we will know soon. ****The following behaviors are often associated with Asperger syndrome. However, they are seldom all present in any one individual and vary widely in degree:

• limited or inappropriate social interactions (Her social interactions are strained most of the time)
• "robotic" or repetitive speech (She repeats words and phrases over and over until we have to force her to stop)
• challenges with nonverbal communication (gestures, facial expression, etc.) coupled with average to above average verbal skills (When she was a baby, she started talking and then stopped. She started back again late and had a hard time using her words. She would point and make noises in her throat)
• tendency to discuss self rather than others
• inability to understand social/emotional issues or nonliteral phrases (She doesn't understand sarcasm at all. Everything is literal to her. She also has a hard time understanding boundaries in social situations.)
• lack of eye contact or reciprocal conversation (She used to have a harder time with this than she does now but she still has trouble wit it at times.)
• obsession with specific, often unusual, topics (Body parts)
• one-sided conversations (She has complete whispered conversations with herself)
• awkward movements and/or mannerisms

So, What's Going On?

Well...

Clara is losing her hearing, it's an official diagnosis now, in her medical file and everything. :( They fit her for her hearing aids and let her pick out the colors, we're just waiting to pick them up. They told us that they wouldn't recommend her going to the school for the deaf just yet though because she didn't start losing her hearing until she was 12, so her language will always be spoken English. They said since the school is a predominantly quiet grounds, it wouldn't do Clara any good at this point. They said there is no way to determine how fats her hearing will go, but when it goes, she will have the option of Cochlear implants. (But Johnnie says no to those because he's scared of them). So for right now, we wait it out and see what happens.

Marian saw her Rheumatologist and she's setting Marian up to start monthly infusions at Egleston starting in 4-6 weeks. Her body just isn't responding to her medication anymore and she doesn't want the Enbrel shots. Mary actually chose the Infusions over the shots. So here we go.

Clara asked me to change her surgeon a few weeks ago. She got to meet Dr. Williams, her new surgeon yesterday. He came in, sat in front of her and looked her over and just hung his head. He stayed that way for a few seconds and then sat up and looked at me with this "I'm sorry" look on his face and said, "Ok, here's what we can do..."

So Clara now has two surgeries scheduled to fix what her last surgeon didn't do. Dr. Williams is going to fix Clara's lips, making them symmetrical. He's going to try to fix her deviated septum so Clara can breathe through her nose. She is going to clean up some of the scarring around her nose and top lip and then later, hopefully, he will bring her jaw forward and close the hole in the roof of her mouth.

She already went through the surgery to move her jaw forward, but Dr. Williams told us yesterday that it didn't take because her previous surgeon didn't soften up her top lip first, so the jaw really had no more room to go forward. He's fixing that this time.

Clara liked him. He wasn't rushed. He wasn't rude. He didn't keep telling her that he wasn't concerned with her concerns. He listened to her and he was polite and thoughtful. I am praying that he stays this way for her.

Mary is hurting really badly now. Her stomach just won't let up on her and now her left hand is starting to hurt her. Her legs stay sore and so does her right hand/wrist. She stays tired and ill lately and she has been giving grief as well as getting it because of her bad attitude. I know it's brought on by her pain and her changing hormones, so at times, it's easier for me to just let it go. Others are having a harder time with it. I just hope that one day soon, she won't hurt so bad. I am really hoping these infusions will help her.

Yesterday, I drove Clara to her doctor's appointment, all by myself. That doesn't sound like a big deal or anything worth mentioning, but I drove her to Sandy Springs!! (Atlanta) I drove all back roads and it was really stressful, but I did it!! No more asking/begging people to drive us to Atlanta when Johnnie can't get off work, cause I can do it! I am so happy with myself and I feel so accomplished with this, y'all. LOL I know it sounds silly to those who have been driving in and out of Atlanta for years, but this is very new to me. I even drove us home on I-285!! That is a huge fear of mine, but I did it! And Clara even told me that i did better than her Daddy because I didn't cuss anyone out. LOL

It's a good thing I did this too because now all three girls have doctors up there in that same area.

My Family and Addiction

I wish I knew the pattern to addiction. I have watched this "thing" destroy and rip apart members of my family (and other families) for far too many years now. Today is just a new day, different person (people). It's so very sad and the feeling of hopelessness is overwhelming. I can't imagine being their parent and watching it eat them up, affecting every aspect of their life. Having raised these beautiful babies, watched them grow, watched them take their first steps, say their first words, the excitement as they discovered each new amazing thing and to cover them in the protection of your very own life for most of theirs just to have them grow up and be unable to do that for them when they need it the most... It just breaks my heart for their mothers and fathers, sisters and brothers, and everyone else that loves them so much. I fear for my own children because it seems to be in the blood. I don't know if that is true, if it's the case or not, but it seems to really take a hold of the men in our family (and some of the women too) and it just tears them down and makes them unrecognizable. You don't know who will suffer it or what causes it, in order to be able to stop it from happening at all. You just worry and try to do your best to shield your children from it. I know one thing, I want my kids out of Henry County, asap. I fear that this county will swallow them whole if they stay here much longer. There is far too much accessibility to the bad stuff, too much crime, too many wanna be thugs living the "hard" life.

I can only hope that they know I am crazy enough to chain them to a bed and keep them away from that life if need be, and that they are scared enough to not want that to happen.

I don't know what it is that makes some people believe that their only way to deal with trauma, pain or tough luck is to give up their lives and the people they love to drugs and/or alcohol, but it seems to be the big thing nowadays..."having a difficult time?" "Awww, just hand it all over to this or that, you'll feel better in no time..." That's a bunch of crap. The devil is a lie! If you find yourself out there... lost, afraid, nowhere to go, please know that there IS always help. You just have to reach out and ask for it.

NATIONAL SUICIDE PREVENTION HOTLINE

CALL 1-800-273-8255

AVAILABLE 24/7

AMERICAN ADDICTION CENTERS

1-877-760-5773

AAC WEBSITE

AID IN RECOVERY

1-877-848-9697

AVAILABLE 24/7

AIR WEBSITE

THE RECOVERY VILLAGE

1-888-965-1907

TRV WEBSITE

SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION

1-800-662-HELP (4357)

AVAILABLE 24/7/365

SAMHSA WEBSITE

DRUG ABUSE HOTLINE

1-888-744-0069

DAH WEBSITE

GA DEPT OF BEHAVIORAL HEALTH AND DEVELOPMENTAL DISABILITIES

1-800-338-6745

AVAILABLE 24/7

DBHDD WEBSITE

MY RECOVERY HOTLINE

1-888-755-0346

AVAILABLE 24/7

MRH WEBSITE

There's just no excuse to continue down that path and worry your family, your loved ones and to just keep making bad choices and bad decisions, one right after the other when there are so many options available to you to get you the help that you need. No one can do it for you. No one can hand it to you. You have to stop being selfish and make the choice to be better for your kids, your parents, your siblings, yourself. And if you cannot find any other way, there is always a way...Jesus Christ came to Earth to help those who need him the most. Mark 2:17

On hearing this, Jesus said to them, "It is not the healthy who need a doctor, but the sick. I have not come to call the righteous, but sinners."

When you believe that you are alone, that your family has turned their backs on you...when you feel like there is no hope, no way out of the things that you have done, just remember that Jesus came to Earth for YOU, because of YOU and your need of Him.

You can turn it all around, you just have to make the decision to do so. And do it. 

Jesus, Friend of Sinners

Working Girl and Other Updates

I got a job. :)

The pay is horrible, the hours are horrible, but it's more than I was making at home. ;P

I am working at a daycare center, kind of floating between the infants room and the Pre-K room, afternoons from 2-6:45pm. I mean it works for me right now, it's bringing a little extra money in and I have my mornings for doctor's appointments, etc..

Eventually I will need full-time, but for now it's good. :)

Aiden really enjoyed his first day at daycare yesterday. He made new friends and got to play with them. He may have driven his teacher a bit crazy, but it's all new to him, he still has to learn his limits there. He'll get it, it's just going to take time.
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Clara is about to start seeing her new surgeon. Her appointment is set for the 30th of this month. I wish I knew how she felt about meeting him but she rarely speaks to me about her feelings unless she's angry about something. :/

Mary is having some trouble with her stomach still, I am honestly considering calling the nurse and telling her we are done with the Enbrel. Ever since that first shot her stomach has been messed up and y'all know from the previous post on Enbrel, stomach problems from little to big can occur because of this drug. I don't like it, I don't like it one bit. But at the same time, she's hurting. Her shoulders, her back, her legs, knees, ankles, and feet...she's in pain. I don't know the right choice here. I really don't. I know some of the pain has to do with her scoliosis too though...so there is that to consider. Enbrel does nothing for that.

Kat's doing good. It seems as she gets older, the easier she is to handle. Her ADHD and her ODD are still in full effect and still raging on, but it takes less and less time for me to get her to focus and listen to what I'm saying to her, whether she obeys or not is another story, but baby steps...baby steps. We're moving forward, inch by inch. ;P

No Worries and Resolutions

I went to the ER this morning to have them check out my leg. After talking to my Aunts, we figured it would be better for me to just go and not wait in case it was a clot.

They tried to do blood work, but surprise! They couldn't find my veins through the fat, so they moved me along to ultrasound where the Tech was amazing. Talkative, but really comforting and understanding and seriously cheerful and caring. He was great and made me feel not so tense or worried.

He did the ultrasound and let me know immediately, even though he said he wasn't supposed to tell me, that there was not a blood clot anywhere in sight. He said there wasn't even any narrowing of my veins, which was a shock to me with me being so badly overweight like I am. But again, the doctor told me to lose the weight or else I could be dealing with these problems and worse in the near future.

So I got to come home to my family today with that monkey off of my back and feeling a new appreciation for my life. Which I know sounds very cheesy and cliche, but it's true. This whole year, as awful as it has been at times, has forced me to face not only my own mortality but also the mortality of my children and my husband, my mother and my father too...heck I even worried about my brother and he's the most healthy of us all! I have lost so many loved ones this year and having to see death walk away with so many of the people that I love and care for over the past two years has made me gain a whole new respect and love for my own life and the lives of the ones still here, even as bad as it can be at times...I am blessed. We are blessed.

I am making it my goal to let the little things not be big things anymore. Stress less, love more. Let the trivial things go and focus more on letting my family know that I love them enough to chill my anxieties and dramatics that seem to come so naturally to me for some reason, and to just be happy in the moment, (I wish Johnnie would come to the same realization, but I guess we all face our own demons in our own time).

This year I am not going to sit on my butt and watch my life happen without me. I am joining a gym, I am starting a clinic with my doctor for my weight loss, I am getting a job, I am graduating school, and I am getting our credit worked out and fixed once and for all. 2017, God willing, is going to be a great year of triumphs for us.

We have decided to stay put here while we get everything in order (hopefully no more than 6-7 months) instead of trying to do it in our own place and failing miserably because we can't afford it, just forcing us to come back here anyway. This time, we are going to do it right and when we get out, we are staying there. Sadly, it has taken me 36 years to grow up. But than again, I have always been a bit slower than most to figure things out, so it shouldn't be a big shocker for those who are close to me and know me well.

This is our year. 2017 is going to see great new things for us, I am praying and claiming it in the name of God.  <3