RAM*

  Seth has a new diagnosis. It has taken a long time to pin this one down. It has been camoflauged with many other diagnoses and issues. But today, I feel we really, truly came to the perfect diagnosis for him.

His new diagnosis?


*RAM


*Random Acts of Madness

Let me tell you how we finally found this diagnosis. It all began one early morning. I got the kids up and started in on the routine to get ready for school. I fixed Seth what he wanted for breakfast. Cereal and chocolate milk. Yum! As i did several other chores, I watched them eat out of the corner of my eye. Suddenly I saw Seth with his hand in the glass of chocolate milk.

Seth! He snatched his hand out so fast milk droplets sprayed all over him and he looked like a deer in the headlights.  "What are you doing?' Answer: Stirring my milk. Arghhhh. Don't stir it that way, use your spoon.

Then I saw that he was eating the soggy cereal with his fingers. Seth! Again the hand is snatched back and the eyes get big. 'What are you doing'? Answer: Eating cereal. Don't eat it that way, please use your spoon. Double arghhhh!!!

Next, I am in the closet pulling out outfits. Seth is around the corner from me, but he doesn't know I am here. Levi walks past him and I clearly hear him say, 'I hate you'.

SETH! I round the corner and he looks totally shocked. I inform him what privilege he loses and he begins to cry and claim he is SORRY, it was a JOKE, and he DIDN'T do it.

When I went to work and told my co-workers, who are all trained in special needs kids, what Seth had done this morning, they all proclaimed he has RAM.

I agree. The PERFECT diagnosis finally.

This is how our morning goes

Planned Schedule

3:30 am Chris gets up to get ready for work
4:00 am He kisses me goodbye and tells me he loves me. I try to go back to sleep
5:00 am I get up, knit and watch DVR shows for an hour, drinking in the calmness
6:00 am Get dinner prepared and into the crockpot
6:30 am Jump in the shower and get ready for work. Possibly interrupted numerous times as small people wake up
7:00 am Anyone still sleeping has to wake up
7:10 Prepare breakfast
7:15 Kids eat breakfast, I feed dogs, rat and turtle, put lunches in backpacks, etc
7:30 Get kids dressed, perform daily shoe hunt, double check folders fro homework
7:40 am Out the door
7:45 am Drop kids at school

Reality

6:45 am OMG I overslept, throw on clothes, brush teeth and hair, throw on makeup
7:00 am wake kids
7:05 wake kids again
7:10 pull blankets off of kids and turn lights on
7:15 Literally drag them out of bed and prop their semi-comatose bodies at the table, place food in front of them
7:16 Stop whining, eat your breakfast
7:17 STOP WHINING and eat your breakfast
7:18 clean up spilled cereal
7:19 No More whining!!!!
7:20 Throw food at pets, hopefully they all get some
7:25 Grab outfits luckily laid out night before, begin stuffing kids into clothes
7:30 Where are their shoes? I have 7 different shoes, none of which match. Contemplate starting new fashion trend of mis-matched shoes - keep searching
7:40 Grab backpacks, last pair of shoes not on a kid, 3 boys and my purse and dash out the door.
7:43 Turn back around, run into house and grab my lunch, head to school
7:50 Drop kids at school and head to work. (Sniff shirt to make sure I don't smell.....)

Today was an 'As Planned Day' and I love those. But the truth is, no matter how much I prepare the night before, or how well organized things are, we end up with more days like the Reality list. Oh well, we eventually get there and everyone is happy. isn't that what life is all about?

Ahren's Accidents

  It had crossed my mind that maybe Ahren was using Seth's most notorious method for getting attention and pushing people away, but only briefly. First, Ahren has ALWAYS had huge issues with constipation. He has been on meds fro three years to help him go on a regular basis. I am not talking the run of the mill episode of constipation, I am talking bloody tears even WITH the medication. His muscles are weak, even those in his intestinal tract, and they just do not move waste efficiently. We have fought hard to keep him regular and not let him get a blockage or develop encopresis*.
  I had noticed that during the first week of school we did not see one single BM from him at home or school. Each day I added more fiber and other 'moving' foods and that weekend he went 9 or 10 times, each one very large. Then it was labor Day then we had the rest of the week off for the fires. He had no problem at home.
  Back to school and again he was getting backed up. I implemented the same measures but this time, by Thursday, he was pretty blocked up and after lunch, recess and then PE, the liquid waste from higher up in his intestines made an end-run around the hard part and he was blind-sided. Accident #1. I thought that maybe I had given him too much assistance and that resulted in his stools becoming too loose. I backed off some and he seemed OK.
  Next week the exact same thing happened, same scenario. Only this time the poor guy went to the bathroom in time, but someone was in the stall. He tried to go to the girls bathroom but didn't make it to the potty. Accident #2. Mommy schedules a doctors appointment and prays he is OK for now.
  The doctor is concerned he has crossed over into *encopresis, a situation where chronic constipation dilates the bowel and reduces the nerve sensations in that area. He is losing the sensation of needing to go. We worked over the weekend to get him cleaned out with little success. This week we are continuing meds, plus probiotics and fiber, and adding prescribed potty times. The school nurse gets him every day after lunch and takes him to her office and he sits on her potty. Seems like a good plan, right?
  Accident #3 happened yesterday at the end of the day. Luckily I was home and could immediately go get him. I also took the super nursing staff a case of baby wipes and a bunch of clorox wipe packs. Bless their hearts they were all hugging me and telling me it was OK. I just HATE this! Is he losing function because of his muscular dystrophy? Will it get better or not? Is he going to be the kid in diapers at school, soon to be in a walker or wheel chair?

  Oh, and the frosting on the cake? My little intentional pooper told me last Thursday that he just might have an 'accident' at school, too. I told him how sad I would be since he has done such a super job, and also told him it is awful for this to happen to Ahren. It's embarrassing and the other kids might make fun of him which would really hurt his feelings. Sure enough on Friday he came home with dirty pants in his backpack and a note from the teacher. Now get this, he managed to get the tiniest smear of poop in his underwear. Then went to the teacher and whispered to her that he had had an accident. She helped him get his back-up clothes and he went back to the restroom, cleaned himself up and changed clothes. Then quietly placed the dirty clothes in the bag in his backpack and returned to class. Not one kid ever realized what he did. Of course, the first thing he announced to us that night was, 'I had an accident at school', all the while wearing a big smile.

I'm sure the school is loving us.......

Oh my aching heart

Ahren, sweet, adorable, big eyed, captivating small boy. Oh Ahren. He is struggling big time at school. Today I got a call from the nurse. Actually it was the third or fourth call from her since school started. Oh how I LOVE this woman! She has taken Ahren under her wing and made it her mission to help him.

For the third time in three weeks of school, Ahren had a major potty accident. The first was just #1, but the next both included explosive #2. Each accident has involved the teacher, the nurse, the assistant and the janitor. Each has included a complete change of clothes, including shoes. And each has been devastating to this Mommy. (Ahren is not upset at all. He accepts the situation and is just, well, Ahren)

We tried to implement a system where each time he needed to potty #2 he went to the nurse's office and she helped him. That worked well for a bit, but today he just didn't have time to get there. He ran to the closest bathroom but someone was in the one stall. So he ran to the girl's bathroom but it was too late. Disaster. The teacher found him a little later and called the nurse. Who called the assistant. Who called the janitor. Lather. Rinse. Repeat. Poor baby!!!

Does anyone have any thoughts? Ideas? Solutions? At home he has much closer access to the potty and doesn't have this much trouble. How do we help him? Is he losing some function or is it a situational issue?

Oh my Mommy heart aches. I do not want him to be known as the kid who always messed his pants in school. Kids can be so cruel and the NEVER forget!

Finally got this pic off phone

This is how the sky looked a couple of days ago from our neighborhood. That is the Sun behind all that black smoke. Thank Goodness they are making progress against the fires. 

Society of Samaritans is accepting donations

The local Society of Samaritans, or SOS, is gladly accepting all food, hygiene and household products at this time. I just got back from dropping off our load of baked goods, diapers, toothbrushes and paste, deoderant, tampons, the fixings for a spaghetti meal that would feed about 50 people, and 6 bags of dog and cat food. They were so appreciative. I got there just as they were beginning to assemble sack lunches for the firefighters and they were so excited over my cakes and brownies. In fact, they were so nice that we are going to make a monthly donation to them for our community.  What better way to put my couponing to good use!

If anyone out there wants to still donate, I can give you the contact info.

Warning - RANT

  Today is an historic day. One I am trying to impress on all my children so that No ONE EVER FORGETS! So far, the little guys do NOT get it. Not even a little bit. Oh well, there is time.

  Right now, we are dealing with the here-and-now of the fire in our little community. I have spent the last 24 hours couponing, shopping, buying and cooking. I have also called the local YMCA that is the designated center for feeding the firefighters, the three local churches that are hosting evacuees, the national Red Cross number, the local volunteer fire department and anyone else I can think of who might be coordinating donations. There is a good reason the evacuees here are unhappy. That reason is that the relief efforts SUCK. Everywhere, except the local volunteer fire department, either had no one answering the phones, directed you to another number that rang dead, or told me that there was no one available on the weekend who could answer my question. Seriously! I called the dang national Red Cross number and was told that NO ONE was available on the weekend who could tell me where donations were taken. Only my local volunteer firefighter station could help me, and they directed me to a small, local, community based program who was more than GLAD to take my donations.

WHAT THE HECK?

I have food, diapers, toothpaste and brushes, deoderant, soap, more food, shampoo, drinks, shoes, personal items and much more. The news is full of people BEGGING for help and yet...YET, no one can tell me where it should go.

I am one ticked off Mama tonight. Come Hell or high water, tomorrow all of our donations are going to the local agency, the teeny-tiny community based group who is there to help. Chris thinks that a wildfire is just not important enough or big enough to get people to help. Well God help us all, since it feels a lot like HELL here these days.........

Fire Update

We are still at home. Yesterday was a bad day. The winds picked up to 15-30 mph and switched directions. The total burn area went from 12,000 acres to 22,000 acres overnight. They have used the term 'extremely aggressive' to describe it. They are now using many firefighting planes and helicopters, the largest a DC10 that drops 12,000 gallons of fire retardant in a single load. I learned something new about that. The retardant only slows down the flames, and makes them smaller so that ground crews can put the fire out. It's the firefighters on the ground who do the most important part and have the most dangerous part. The heat has been rising back up here, too, causing many firefighters to suffer heat exhaustion. They are saying it will be back up in the 100's by the beginning of the week.

We missed school all last week and they are trying to decide if we will have any this week either. The smoke gets horrific by the afternoon each day and the fire is constantly moving and growing, threatening new areas, including schools. One of our high schools is being used as the firefighting command center, and the other was the evacuee site until a couple of days ago. The local YMCA in Magnolia has been using volunteers to cook around the clock and provide everything the firefighters need. The evacuees are being taken care of by the Red Cross. Businesses and individuals have opened their doors to people, given out clothing, food, drinks and gift cards, and there are legions of people providing emergency housing to large animals and pets. We are a small town with a HUGE heart. Tomorrow I have volunteered to bake 200 servings of cookies and brownies and drop it off to the command post. I also have clothing and shoes to drop off at the evacuation center.

Wildfire update

Still burning away, still way too close to my home, still causing sleepless nights and stressful days.

This is how this fire thing has been going. As the winds die down at night, the firefighters gain considerable control over the fires. Serious control, like 80-90% contained. Then a new day dawns and the winds pick up, change direction a bit, and the fiend is off again burning in a new direction and threatening more people. The skies are dark with smoke. Large black plumes rise from new areas of burn, turning whiter as water hits the fire. One area dies down and another springs to life. The entire city can now smell the smoke, even 50-60 miles away.

The evacuation center was located between us and the fire and that made me feel a wee bit safe. Then last night they moved it to a spot past our house. We are now in between the fire and the safe zone. No, NOT safe. The evacuation center is crammed full tonight. Not even a single parking spot left. People who had been allowed to go home were evacuated again today as the fire flared up in the same areas.

The hardest part is the lack of reliable news. Where is it burning, which way is it moving, who is in the direct line of fire? There is no info making it to us that gives us that info. You would think that would be important so we would be prepared to evacuate! But no, no news, no details. I fully expect a knock on the door and a bullhorn blaring from the street in the middle of the night and we will have mere minutes to load up and get out. We are ready, as ready as we can be. Still, it would be so nice to have advance warning......

If you don't hear from me in the next 48 hours, we have evacuated. We will be safe and sound. All physical belongings can be replaced. Our lives and our family will be intact. That's all that matters.

Down, down down into a burning ring of fire....

Well Ladies and Gentlemen, it appears that our sweet, small burb has made national news, and not in a good way. We live in Magnolia, Texas, the site of a raging, voracious wildfire that in 24 hours has consumed 7800 acres of land. More than 8,000 people have been evacuated and the schools are all closed for us. Don't worry (I am doing enough of that for all of us) we are safe. We happen to be on the back side of the fire. Even so, I sat up for hours last night watching the golden glow over the tree line, listening to many, many sirens, and calculating how much I could stuff into a mini-van in 3 minutes.

All the while, my sweet hubby snored away, oblivious to the threat and my fears. Well, except for the point at 2 am when I rudely poked him and pointed out that there were a lot of sirens that sounded way to close to our house. That resulted in 20 seconds of mumbling and then more snoring. Is it wrong to be upset because someone remains calm? Why didn't he share my panic? I could have used a co-hort in crisis right about then.

So the fires are within a 2-3 mile point of our house. Many of our friends have had to evacuate. The smoke has permeated our home and burns our eyes. It is dark, like a cloudy day, but it is actually clouds of smoke. Frankly, it feels a little bit like Hell. (Especially the part where the kids have no school....LOL!)

Too close for comfort. I doubt I will sleep again tonight. Fires are blazing up again all along the path it already travelled, since the brush is extremely dry and they can't put enough water on it to soak it.

Scary. Scary. Scary.

Oh Ahren

  For the first time in 8 years we do not have an in-home sitter watching kids in our house. We signed the boys up for the very-cost-effective after-school program run by the YMCA. They stay at their school (I like the idea that no one is driving my kids around) get a snack, do their homework and play until one of us picks them up. Levi and Seth LOVE it. But Ahren? Well, he has an issue. (But of course, it was never meant to go smoothly, right? Someone had to have an issue.)

  It seems that there is an older girl, probably 19-20 years old, who has special needs and is the daughter of one of the teachers. She still attends the high school and they bus her to her mom's school at the end of the day. She waits in the after-school program for the 20 minutes or so until her mom is done and then they leave. It appears that she has the mental capacity of a small child. She is non-verbal but makes loud keening noises when excited. More than anything, she wants to play with the other kids.

  Ahren developed a huge fear of her and we were stumped as to why. All he could tell us was that she kept smiling at him and he was scared. The teachers intervened, the counselor tried to help, and even the Principal stepped in. Still, we could not figure out why he was so afraid of her. He has seen many special needs kids since he spends every Saturday at work with me. Of course, they were all closer to his age and size. It seemed that he wasn't being overly dramatic for attention, either, since he was shaking, crying and truly scared. Each day, once she left he was totally fine and loved the program. I have to admit I was a bit embarrassed. We teach tolerance and acceptance, that God makes people just the way he intends and that we should love people for what is on the inside. So why was my sweet boy being so, should I say, MEAN to this girl?

  I decided to step in and try and work things out. I went to school before the last bell and waited outside his classroom. Once they called the Y program kids, I walked with him to the cafeteria. Hew began to tremble and cry silently as we entered the room. He also got me in a choke hold and I was surprised he had that much strength! We sat down on a bench and I spotted the girl. She was staring intently at Ahren, and moved to sit close to us. She had a Barbie doll that she kept waving at him to try and get his attention. This made him more upset so we moved across the room. She followed us, all the time smiling and trying to get Ahren's attention. Then, frustrated by his lack of interest she moved off and tried to play with some other kids. When she couldn't get their attention, she smacked one boy upside the head with her doll, much like a toddler will do when they can't express themselves with words yet.

  Lightbulb moment. Ahren, does she hit kids often? Yes Mommy, every day, and she pulls hair and slaps them too. Is that why you are scared? Yes, she is always smiling at me and I think she is going to get me. Ahren, do you realize that inside she is really just a big baby and she hits because she wants to play and can't talk? Oh, mommy, she is half grown-up and half baby? Yes, honey. If she hits, tell her No, No, just like you would a little baby.  Oh, I can do that.

  And ever since then he has been fine. One more child will go out into the world understanding the special needs of another person and adjusting their mindset to accept them. (Does anyone else see the irony that Ahren is a special needs kid himself?)

Better late than never!

I refuse to feel guilty because I am

A) Too busy to blog
B) Completely lazy
C) Uninspired
D) All of the above

Sometimes life just gets in the way of things. Things like blogging, shaving my legs, and dusting.

Two weeks ago we had the first day of school. Did you hear me woohoo-ing? Yup, that was me. The school has been awesome and we hand-picked the teachers for Ahren and Seth so that they had a good fit. Seth's teacher is calm, very experienced and will keep very strict boundaries. Ahren's teacher is warm and loving but not easily fooled. She will push him and keep him on track.

 Ever try and get three excited boys to pose for a first-day-of-school photo? 

 The first day of school went very well. No one got lost, no one cried (nope, not me. Maybe a wee bit teary, but no crying) Ahren obviously didn't quite grasp the concept because he asked at least 3 times if he got to come back tomorrow.

Second day of school and Ahren had an accident. The 'urinal' usage issue. I spent the evening giving him a 'how to aim your toot' lesson. Considering I am ill-equipped for such a lesson I feel I still managed quite well. Hit the water!

Ahren also had some issues with going #2 at school. He began holding it, which is a bad thing considering his constant constipation issue. Over the first weekend he went 7 times, just catching up from the week. We decided to add a fiber/probiotic to his daily dose of miralax. Unfortunately that got him moving enough that he had to go at school. He went to the bathroom but tried to pull his pants down without un-doing them and ended up peeing and pooping as he struggled. His teacher found him and called the school nurse, who called the janitor and a teacher's helper. Thirty minutes later he was all cleaned up, in his back-up outfit and back in class. The school nurse has now suggested that if he needs to poop he should come to her office and use her potty. Poor kid, coordination is just not his forte!

 I think I forgot to tell you that we have a working diagnosis for Ahren of Muscular Dystrophy. The definition fits his symptoms the closest so that is what we and the doctors are calling it. He has good weeks and bad weeks. We keep tweaking the supplements and therapies and he is doing well.

We ended the second week of school with Ahren doing a face-plant at school and getting a fat lip. The nurse called me and she didn't want to send him on to the after school program (she has a bit of a crush on him I suspect) so I left work early and picked him up. He looked just fine to me but I am used to his bumps and bruises.

I knew Seth would be on his best behavior at first. In fact, I was counting on that honeymoon period. He slipped up a little last week when he had to drop his color from green to yellow for not keeping his hands to himself. He didn't hit, but was poking another child with his finger while trying to tell them what to do. (Mr. Bossypants lives on)

Unfortunately, on Friday, he came home with a girl's bracelet, a necklace and a red toy car. He claimed he got all three from the treasure box. I happen to know that they do not give more than one treasure at a time, so I asked him about the items. I have now gotten 4 stories of where they came from. Anyone else out there smell a rat? The truth is that he got the mardi-gras style beads from the treasure box and the bracelet and car by some other means, most likely stealing, since he has no true explanation of how he came to have these items in his possession. So tomorrow he will return the items to the teacher and tell her how he got them (no idea what story he will give) I will have already warned her. This should be interesting.