1337 Gangsta Love

This past weekend was Amonte's state level BPA convention. Sadly, he did not make it to nationals. In computer security he missed going to the next round by two measly questions. Then to make matters worse the high score in round two was only like a 48. He placed 12 in Microsoft networking and the top 10 go nationals. However, if 2 people drop out then he can go in their place. This also means he misses out on the church mission trip to Jamaica. It is the same week as nationals and he had to choose one over the other month's ago because of deadlines. So he is a bit bummed that he gets to do neither. He did have a good time though and got out more than he has in months. Plus I think he may have met a girl-but talking to him about that is a total nonversation. Judging from the pictures there were some hawt little nerds there. Anyone is better than hickey girl.

MEAN PEOPLE SUCK

I randomly search the Internet for new information on Amonte's disease (Steatocystoma Multiplex) in hope of finding a new treatment. My search often includes blogs. Imagine my surprise when I came across this blog. With multiple copies of an entire post of mine copied by an author named Your Body Sucks. Word for word.

I find this disturbing on so many levels. First of all, when you do a blog search for SM this is the very first post that come up. Someone searching for assistance, information or maybe friendship is led directly to this asshole. Secondly, he apparently finds the pain and suffering of others something to be used for his own amusement. Third, Blogger makes it a bit difficult to deal with this. I will have to file an infringement notification and wait for their response. I did leave a comment requesting that MY post be removed within 48 hours. Doubtful he will comply.

I have always been very open on my blog, especially when it comes to Amonte's illness. I have been spammed, ridiculed, lectured and criticized. But I have always felt that if anyone else could benefit from what we are dealing with-if anyone found comfort knowing they weren't alone-if anything good could come from his pain...then pouring my heart out to total strangers is worth it. I refuse to censor myself now. Or ever.

Feel free to overload his inbox with hate mail on my behalf. Fucker.

The Return of the Azzdate

This kid can't get a break. Mid January Amonte got signed off of daily wound care from his September surgery. A week later a new cyst appeared on his leg and a cluster of them on his tail bone. Amonte is getting really good at recognizing the symptoms before they even appear so it was caught fairly early. Easy surgery, able to close with sutures, no wound care. One week later another one in his groin. Surgery this week did not go quiet as well. The cyst had grown significantly and started draining. This makes it much more difficult to remove the cyst and wall intact. The surgeon was able to place sutures in the lower level but had to leave the top layer open in hopes of preventing an abscess. Although this will not require major wound care it will still need a daily dressing for the drainage and the healing will be significatly delayed. He was much more painful this time and the anesthiologist apparently did not medicate him for nausea so he spent most of the night post surgery puking. Lovely.

Amonte seems to be holding up fairly well under all of this. He is depressed which I would expect and it has taken a major toll on his social life. But somehow he is still able to make jokes and look towards the future. I am not coping as well. I'm totally overwhelmed and angry. Really, really angry. I feel totally alone and helpless.

I know it could be worse. I know that this is a lifelong condition. I know that he has had surgery before. I know he will have surgery again. Knowing it does not make it easier. Every time is as difficult as the first. And I imagine it will continue to be.

I love Nerds!

Amonte is an official member of the nerd herd and I couldn't be prouder. Last year after spending too many hours redundantly watching Hackers he decided to test his own skills and got busted cracking the schools computer. Here is a tip: watching a movie about hacking while high on pain meds is not a recipe for success.

So this year he enrolled in business technology at the career center with plans to gain experience in computer security...which hopefully will not be used in a life of crime or to change a girls grades. I'm not sure if his hacking skills have improved but he is learning something. Yesterday he went to a regional competition and placed for states in two categories. He also got to wear a suit, look all pimp and dance the soldia boy.

He came home so full of life. It was great to see him happy and dressed in something that included a belt. March is states...wish him luck!!!

17 Wonders

Dear Amonte-
You have to admit while this birthday is not exactly stellar it is by far better than last year. 2008 is in the past. It was a year that has forever changed your life. It brought with it pain and despair. But I hope that you can also see the wonders it held. Amidst all of the hopelessness- strangers reached out to you, answers were revealed, you built a relationship with Christ and found a strength and passion inside yourself that I don't think you knew existed. I hope that 17 brings you comfort, healing and much deserved peace and joy.
Happy Birthday. You're still my McLovin.
Mommy

PWND

I am experiencing major technical difficulties here at the love shack. Basically because my computer sucks like a hangover after a bottle of Brass Monkey. So-I'm stuck sharing
his holiness's
Amonte's laptop. Let's just say he is none to generous with the person who just happened to give him life. I have contest winners to announce shortly.'..even though my first contest was a bust. Apparently I have a lot of Republican readers...um...not that I'm saying it's a bad thing. Anyway-Amonte is having surgery tomorrow so maybe I can snag the laptop while he is stoned. At least he should be weak enough for me to pry it out of his hands!

Azzdate Version 5.0

So, I bet you all thought we were over the azzdates. No such luck. I can continue to tell glorious tales of Amonte's holey ass. We spent the entire summer battling last years wounds and attending tons of medical appointments with a variety of specialists. As you can imagine Amonte was thrilled to spend his vacation OUT of the water and with his mom packing his butt everyday. By August he was all cleared up and *gasp* even got to go swimming. Oh the wonder of it all! Can you just picture me doing the cabbage patch!!!

But then August 16th rolled around. And what pray tell is so horrid about the middle of August? Well, that is when two more ugly cysts reared their nasty heads. It's now October. And guess what? After a ton of appointments, two more surgeries and a hospitalization...we are back to daily ass packin'. Lovely, no?

The good news (well not really) is that we have a diagnosis. Apparently Amonte's ever so generous sperm donor gifted him with a very rare genetic skin condition called Steatocystoma Multiplex (SM). There is no cure. There is really no treatment. To make matters worse Amonte's symptoms are not presenting in typical SM fashion. University of Michigan is perplexed. His dermatologist is a BEEEotch. The drugs have icky side effects. Our case manager at the insurance company is a dimwit. We have a diagnosis-but yet we are headed nowhere fast.

The quicksand is sucking us both in. Fuck. I hope Amonte's dressings will keep us afloat.

Curfew Violation

It's 1:15 in the morning. Do you know where your teenager is? Cause I have no freakin clue. Amonte had a date today that fell through. Against my better judgement I let him go out to a teen night club. His dad picked him up at 8:30 and dropped him off there. He was to pick him up. I put minutes on Amonte's phone to be sure I could get a hold of him. No answer on his phone or his dad's. I'm tired of playing on his laptop and want to go to bed. But can I? Umm. No. Not until I know he is home safe and sound.

This had been a pretty good day. Peyton stayed at his friend's house last night. So Cade and I got up early and went to breakfast and then went to one of those "paint your own pottery places". Cade made a robot and I made a cupcake. We had a really nice time and he looked so cute with his new faux-hawk hairdo. He is such a loving and sweet boy when we are alone.

Then we picked up Peyton and came home. Since it is the weekend Peyton was pretty much absorbed in his video games, as was Cade. All of the little ones were asleep by 8. Which left me with a very quiet house! I should have done laundry, paid bills, scrapbooked, cleaned...anything. But I sat on the couch with Amonte's lap top, drank a Coke and listened to music. so very nice and relaxing.

Until now. I'm gonna kick another hole in his ass...as soon as I find him.

Azzdates Version 4.0

Do not attempt to download this file. Your ass will look like swiss cheese. Your fortune cookie fortunes will be depressing and life will never be the same.

Yesterday Amonte and I drove to The University of Michigan in a blizzard to get the results of his biopsys'. We rode mostly in silence. Both nervous. I think we both knew to expect the worst. We both laughed when I said, "I know this is nothing. Everything will be negative. This is all gonna be from those fucking wrestling matts".

An hour later we weren't laughing. We received the worst of all the possible diagnosis. It is in fact Cutaneous or Metastatic Crohn's Disease. I felt like someone punched me in the gut. There are only a handful of cases. There is no real treatment or cure. The wounds he has may heal or may not. He may get more or may not. Lots of questions and no answers.

Amonte has been quiet. I know he is struggling. He has been lashing out at me. Which hurts. I feel helpless and hopeless-as I'm sure does he.

Friday we go back to The U to speak with the gastroenterologists again. We are hopeful they will be able to provide more information. Until then he continues with daily wound care. Pain meds. The unknown. The silence. The dread.

Uncle!!!!!!

Today my babysitter, who is also an awesome friend took the 3 little ones to church with her and kept them for the afternoon so I could be at the hospital with Amonte. His sperm donor came in the afternoon and stayed for the dressing change so I was able to run home and do a load of laundry before I had to get the terrorists.

We ordered a pizza and noshed on some yummies my good friend and job partner J made for us. Then we finished up Cade's family project and the boys painted some models they have been wanting to do. Of course Peyton left his paint unattended and Her Majesty smeared it all over her new dress and the table. But seriously, the least of my worries.

Right at bed time the phone started ringing. Amonte was calling from the hospital in horrible pain. To make a long story short they had to do an additional dressing change and it was not pretty. They gave him a Vicoden, doubled his dose of Demerol and gave him 2 doses of Ativan before they could get the pain managed. This was the same scenario I was faced with Wednesday night when I only had the option of Vicoden.

I called his dad and told him to get his ass up there ASAP. Of course he took his sweet ass time so Amonte called and so did his nurse. I called him again and he said Amonte told him not to come. He wanted me. I had 2 kids in bed and one on her way to dreamland. Another on the phone bawling. Nobody, not a single person that I could call to help. I sat on the phone and cried with my son. Then I cried till I was sick and sat by the phone waiting for the nurse to call me back.

I have plenty of people who offer to help. But honestly, when the people that should be helpful and supportive are not- how on earth do you ask anyone else? Plus what do I say? Ummm, yeah I haven't had time to clean my toilet in a month, the laundry is piled up to the ceiling, I really need a nap, my dog needs a bath. I mean are you kidding me? Asking for help and being totally ashamed is just not appealing. Asking for help and being told "no" or worse yet ignored is even worse.

But worse yet, Amonte will most likely be discharged from the hospital tomorrow. How the hell will I mange this dressing on oral pain meds? Alone.

Azzdates Version 3.0

Do not attempt to download this file. You will be forced to eat hospital food and pay too much money for magazines in the gift shop.

Amonte was admitted to the hospital today. No bitching needed. I called my wonderful pediatrician this am in tears and shared the whole sored story. He was promptly assigned a room.

My wonderful friend Rachel was his nurse and took excellent care of him. They gave him Demerol prior to the dressing change which helped the pain dramatically. It made him really silly and chatty and then he passed out. Hopefully he will get some much needed rest tonight as will I.

Azzdates Version 2.0

Do not attempt to download this file. Financial data will be stolen and used to pay for gas to multiple medical appointments, numerous prescriptions, supplies and compensation of lost wages.

Since the last azzdate there have been numerous changes. Some good. Some bad. Some unknown.

1. Amonte saw the GI Dr. last week. They were not particularly impressed with the symptoms but did feel there may be a remote possibility of Crohns. They ordered a CT scan and referred us to a pediatric surgeon (the same one Dermatology did).
   
2. Monday we received a call from the Dermatology fellow to tell us that all biopsy's were negative. "Good luck getting a diagnosis. " Thanks.
3. Monday received an anxious call from pediatric surgical/endocrinologist wanting us to come at 3pm that afternoon. Met with the head of dept who is also a professor. He was impressed with the wounds and perplexed by their presentation. He firmly believes it does not fit the pattern of HS. Yahoo. However, he needs to explore more so a third surgery was scheduled for today. Boo. Hiss.
4. Back to Ann Arbor on Tuesday for Ct Scan. Ct Scan completely negative. Hip Hip Hooray.
5. Up at 5 am to head for Livonia for surgery. Zero hours of sleep night before due to baby with a fever and power outage. No power=no alarm clock. I was terrified I would over sleep even once the power came back. Got lost in the hood. Arrived at surgery center with moments to spare. Professor performed through exam under general anesthesia. No fistulas. Yeah baby. Large amount of tunneling and poor granulation of abscesses. Both areas enlarged. Shit. Professor presents information as generally positive but confusing. Does suggest that there is a strong possibility this may be Subcutaneous Crohns Disease...which is rare and untreatable. Damn. Numerous biopsies were taken and we must await results for any chance of diagnosis. Fudge.
   
6. Professor suggests change in wound care regime. Sounds simple and painless. Hot diggity Dog.
7. Quick case of diarrhea requires emergent wound care. Not simple. Not painless. U of M resident on call=no help. Pediatrician out of town=no help. Pediatrician on call="you're not my patient"=no help. Fuck me. Seriously. Tears and screaming ensued. I cried harder and longer tonight than I have in ages...so did Amonte. Boo. Hooo. Hoo.
   
8. Tomorrow somebody better do something to help this kid. I want him admitted to the hospital for pain management and wound care. I'm going to be a bitch on a mission. I'm one step from a nervous breakdown. One tiny half step. Warned.
   

Surgical 16

Dear Amonte,

I have been wanting to write this letter for weeks now. However, with everything that has been going on it never seemed like the right time. I know that this is not how you imagined turning 16. It certainly isn't what I would have wanted for you. The past two months have been so painful for you. Both physically and emotionally. But in this I have learned something new about you. You are stronger than I have ever given you credit for.

It's no secret that I have babied you. Spoiled you. I spent so many years trying to make up for the absence of your father and for all the mistakes I made while learning to be a mother. I never gave you a chance to figure things out for yourself. When anything was difficult I swooped in and took over. This time, I can't take over. I can do nothing to help you. But my helplessness has let your true strength shine.

You have handled yourself with an amazing amount of courage, dignity and humor. You have faced pain and uncertainty calmly. You have never once lashed out at anyone trying to help you. You have found the comical in a situation I could never see the humor in.

I am so very proud of you. For if 16 is any indication of the man you are growing into all those who know you are truly blessed.

"Bow down to me, cause my ass is holy!" I'm bowing. But not because of the huge holes in your hiney. But because you are an amazing young man with a bright future.

Happy belated sweet 16 McLovin.

Love,

Mommy

Azzdates Version 1.0

Please do not attempt to download this file. Your computer will seriously compromised. Holes will develop in your spy ware. Virus protection will be rendered useless. You will be spammed with vast amounts of porn. You have been warned.

Please forgive Friday's cryptic post. I had been given some new information on Amonte's condition and I was feeling rather overwhelmed. I had not yet shared with him and I thought it only appropriate that we had discussed it before I spilled to all of you.

Amont's has been going to the wound care clinic for the past week now. The nurses there are wonderful and very knowledgeable. They discovered several other abscesses (including a very large one) during care. This lead them to the conclusion that Amonte may be suffering from a condition known as Hidradenitis Suppurativa.


Monday we went to the University of Michigan to see the infectious disease doctor. They quickly referred us to both dermatology (who we saw that day) and to a GI specialist who we see tomorrow. To make a very long story short-they believe it could be 1 of 3 possibilities:

1. It was MERSA to begin with. For whatever reason cultures did not show it because of abx he was previously on.
2. It is HS. A definitive diagnosis is difficult until you have suffered multiple outbreaks. They may be able to tell my doing a surgical biopsy. We are being referred to a surgeon who specializes in this area of diagnosis and treatment.
3. It could be Crohn's disease. This usually peaks around age 15 and may show only skin involvement prior to all of the GI symptoms. Hopefully GI will be able to share more tomorrow.

Needless to say all of this is extremely overwhelming for both Amonte and I. None of these are wonderful options. Please continue to pray for him. And I will be keeping you updated as we know more.

Thanks again for all of your kind words of encouragement, your prayers and your phone calls. You guys freakin rock!

She's ALIVE!!!!!!!

I'm back. Did you miss me? Things have been crazy busy since Amonte's surgery. I want to thank all of you for your kind words and prayers. It was much appreciated. I am trying to get caught up on my reading and I have tons of stuff to blog about.

Amonte's surgery went well. However the surgeon said he had to be much more "aggressive" this time. The area is considerably larger and deeper. The first packing was on Saturday...his birthday. To put it mildly it did not go well. It was excruciatingly painful. Sunday and Monday were no better.

I spent all day on the phone Monday calling in every suggestion and favor I could round up. Today we skipped the home health visit and went to the wound clinic. Luckily my brothers MIL is a nurse practitioner there and squeezed us in. Talk about a life saver. For starters they were able to make the entire procedure significantly less painful and make it only every other day. Unfortunately they also found 2 other abscesses that needed care and packing. Yikes.

We have an appointment with infectious disease at the University of Michigan on Monday. However, all of the wound cultures have been negative as of yet. We are leaning towards maybe a dermatological issue. Who knows. We anticipate another 4 weeks of wound care before he can return to school. (Anyone like to tutor????) He will miss the church ski trip which he was really looking forward to and the second segment of drivers ed and his birthday party are on hold. He is rather depressed, bored and lonely. I feel helpless and am spoiling him with video games which I know is not the answer.

Please continue to pray for him and send us some good healing vibes....

Well ain't this a kick in the ass

I hate snow. Yes. I know. I have said it before. But I REALLY hate snow. I woke up this morning to a winter wasteland. I was not amused. But as I drove down the empty streets to work I found myself feeling peaceful, calm. It truly was beautiful...from the warmth of my car. I needed those few moments of solitude. I sat in the car listening to James Blunt and gazing at the drooping tree branches. Knowing that the remainder of this week will be an ass kickin' good time. Literally. Amonte went back to the surgeon yesterday. He is not healing well and a large abscess has formed. He will be going to surgery on Friday. The day before his 16th birthday. More wound packing. More IV's. No back to school. An ouchy birthday. I feel so bad for him right now and completely helpless. I wish it was my ass and not his. I wish we had answers. I wish he had his life back. I wish I could fill the loneliness he feels right now. I wish.....

Very Nice

According to Amonte things are healing very well...down there. He has 2 follow up appts. still this month but things are looking "very nice". At least we can't smell him from across the room anymore...well not because of infection anyway. I mean he is a teenager. Now if I can just get him to do his school work.....

Exit Only

Amonte came home from the hospital on Friday. It has been a hectic weekend with twice daily Iv antibiotics to be hung, scheduling nurses and daily wound care. I was hopeful that the wound would be looking somewhat better by now and not be quiet so painful but sadly that is not the case. Luckily the nurse that has been coming the past few days is very patient and has a great sense of humor about things. I feel it's important that Amonte be comfortable and able to maintain a sense of dignity...as much as possible in this situation. He seems to be coping fairly well by playing video games, myspace and inappropriate movies. I on the other hand am hanging by a thread. My house is a total pit. I'm behind on correspondence in all forms. I have no Christmas shopping done..or shopping for my Sister in Law's baby shower or Peyton's birthday both of which are Saturday. I plan to partake in some heavy retail therapy which will hopefully pull me together somewhat....Thanks so much to all of you for your kind words, support and prayers. You have been my duct tape.

Your ass smells like ass

Amonte has been on the wrestling team for the past two years. The first year I was extremely pregnant and worked every weekend. Anyone who has ever been to a wrestling meet knows that they last ALL day and are generally on Saturdays. Needless to say I missed several. However, at one meet I watched the entire team of pubescent boys and girls with questionable hygiene SHARE the same pair of nail clippers with out sanitizing them in between. After I had a grandmal seizure I called the school to bitch and promptly bought Amonte his own pair.

Last year Amonte got a new coach. You know one of those really short guys who was an all state wrestler and thinks he's a total bad ass. Amonte broke his hand shortly after the season began so luckily I only had to tell the coach off twice.

The thing about wrestling is that it is a dirty, homoerotic sport, where 1/2 naked boys and sometimes girls grope each other and share body fluids. They also share huge nasty cooties like MERSA, other forms of staph, ring worm and herpes viruses. MMMMMM. NICE.

Well Amonte's midget coach was allowing 2 teenage girls to clean the mats with the wrong type of cleanser no less. Several boys on the team contracted staph infections including Amonte. One had a form of respiratory MERSA and nearly died.

This is why tonight I am blogging from Amonte's hospital room. For the past few months he has been battling huge, nasty abscesses on his hind end. The current one is so bad that he will be going to surgery tomorrow. I love this kid with all my heart but I have seen his ass more than Mark's lately. Thanks coach.

HER name is MORGAN

So last night I just had to know who Amonte's date was. I mean I need to know what color dress so I can help him get flowers and logistics like transportation, ect. OK damn it I JUST WANTED TO KNOW!

M-So who are you taking to homecoming?

A-No response.

M-So who are you taking to homecoming?

A-No response.

M-AAAAMMMMOOOONNNNTTTTEEEE.....WHOOOOO ARE YOUUUU TAKING TO HOOOMMMEEECOMING??? (complete with hand gestures)

A-You don't know her. (AH A RESPONSE)

M-why won't you tell me...I thought we were close *pouting*

A-No response.

M-Is she ugly? Does she weigh 400#? Does she have backne and a mullet?

A-NO. Christ Leave me alone. *kind of smiling*

M- Well if you wont tell me I'll just have to make something up to appease myself.

A-Whatever.

M-*GASP* I KNOW WHO IT IS! OMG It's like totally Brittney the babysitter!


*Brittney the babysitter is my alternate persona. I become Brittney the babysitter,when I need the kids to recall the rules, be distracted, ect. "Like OMG, your mother lets you eat with your feet on the table! Grody, toe jam!" "Like OMG, I do not wipe butts. EWWWW." "Dude, I am not your mom, DO I LOOK like I have ever had a baby? GROSS".

Yes. I am a freak.

M-Peyton! Cade! Come here quick!

A-Ok mom. God her name is Morgan.

M-That's all I wanted and BTW, so glad your not gay.