Events from September to March

The last two posts were updates from my BBC group. I started writing them here but never finished and published them.

I found out some time in September that Jared would be on a waiting list for the AAPD program. I also found out that if he were in a nursing home he would not have to wait. He would have to be in a nursing home for 30 days for the AAPD program to kick in.

I discussed this with Jared's family and we all agreed this was the best option to get more help, fast.

When Jared weaned off Dilantin he improved. With that improvement it was even more difficult to care for Jared on my own. He was falling out of bed, getting more aggressive, and getting into to more things (like eating sidewalk chalk).

All of this took a toll on me. Since the accident my sleep schedule was nearly non existent. I was always tired but never able to sleep more than a few hours at a time. I was a nervous wreck worrying about everything that could go wrong, and had gone wrong.

Financially things were coming to a head. I was barely making it with bills, food, and gas. If I needed something like a new tire or a new appliance I was going to be up creek.

I thought the break would be nice. It would be a good trial if I ever had to admit Jared for long term care in the future.

I had a big problem finding a nursing home that would even consider admitting Jared. Out of the five local nursing homes only one agreed to admit him. Most of them claimed they geriatric patients and Jared would have no one to socialize with. Obviously. Eventually I told them that there wasn't a place full of young disabled people, even if there had been it wouldn't be close to home so his family could visit. Having family and friends visit was much more important to me than having him in a facility with people his own age.

Jared did well with his transition to the nursing home. I packed up and went to stay with my mom over two hours away. I sent Tyson to stay with Jared's mom right before I admitted Jared. There were a few more incidents of Jared being aggressive towards Tyson. I couldn't handle it anymore and I asked her to come and get him until Jared was settled.

I swear I slept for a month. I was so insanely exhausted. I didn't even know I was that tired, I honestly had more energy after giving birth to either of my children!

Tyson stayed with his grandmother until the week before Christmas. I spent time with Catlin, resting, regrouping, and making plans for what would happen next.

Jared had done so well in the nursing home his family requested that I leave him there for now. I agreed. He was happy and gaining weight. His family could come and see him anytime they wanted. He became more social talking with the staff every day rather than just tired and worn out me. He seemed happier all around, less stressed. He had a team of people working for him everyday. More consistency that I could have ever hoped to give him. He had nurses and doctors available to him in the event something went wrong.

I can not tell you how much stress it caused me knowing I was responsible if anything went wrong with Jared. I was so scared he would fall... again..., or choke...again,...maybe a blockage or something. I nearly worried myself to death.

Jared was so happy when I came to see him. He was so loving and happy every time I walked through the door. There was no more fighting with him or having him hurt me and the kids. I could enjoy my time with him rather than being stressed and over worked.

It was hard. At first I felt as if I had failed. I simply wasn't good enough to do it all. I felt like people would think I was going to abandon him. I rented my house and moved in with my mother. She had room and there wasn't much sense in wasting money trying to live on my own when I clearly was emotionally stable for that. Some days I thought I could stay in bed forever.

By Christmas I was missing Jared terribly. I had gone to visit him and picked him up for doctors appointments. But I missed waking up next to him, watching Tv with him, cooking meals for my family, and laughing at the little things.

I wanted to miss him. I needed to miss him. I needed something to put me back on track so I could truly appreciate my time with Jared.

I planed to bring him home for ten days during Christmas. The first weekend we went to his Mother's to celebrate Christmas and Jared's birthday (December 19th). I stayed there a week with his whole family. This was his first real holiday with all of his family, we were all thrilled.

Tyson came home with us, for good, that was his last extended stay at grandma's house. It was time for me to move on and live life as a dedicated mom. I had helped Jaerd as much as I possibly could, I gave it everything I had. I felt good knowing I reached a limit with Jared and that it was ok to want some normalcy in my life. Everyone was happy and healthy and that was my original goal.

Jared stayed with me and my family through Christmas. It was stressful and wonderful. I took Jared to a Doctor's appointment on his way back to the nursing home.

Since then I try to bring Jared home for one weekend a month. Sometimes I visit him between, usually he has a doctors appointment or something to go to. I still have family in our home town and see him when I drive in for various things.

Currently we are trying to move Jared. Jared's brother moved this month and his mother and I agreed we needed to move him closer to one of us. At first I asked to move him near me but his mother decided she wanted him closer to her.

I have struggled with this decision for the last few months. If he moves closer to his mother, two hours in the other direction, she will have to be responsible for doctors appointments and such. She wants to do it. She thinks it will be hard for me to continue on the way I have considering the children.

I really want Jared to be available to me and the kids. We all still love each other very much and I want to continue our little family as it is. I want the children to grow up knowing their daddy and I really like my goofy husband with all of his quirks.

Realistically it's better for him to be close to his mother. Eventually I will have to work or go to school, I won't always have a flexible schedule. Here with me he only has me and the kids, there he would have his mother, step father, and younger brother. It would also make it easier for his father considering he could visit two sons at the same time.

His mother agreed to drive Jared half way anytime I wanted to spend a weekend with him. She also plans to have the kids visit her, and Jared, during the summer or spring breaks.

I'm not sure how all this will work out. Still I'm trying to make the best choices for everyone.

One of those days (delayed update)

I'm still alive lol!
Today was a rough start. Last night Tyson got up screaming and then didn't want to go back to sleep. I was less than trilled to start my day when I opened his bedroom door.

He was covered in pink slime. He found a can of Catlin's play slime and "washed" his hair with it. Awesome.
It was all over the floor and it was a PITA to get up. Ty is always starving when he wakes up so by this point he was screeching at the fridge and jumping like a monkey.

As I tried to find him something quick to eat Jared started yelling from the bedroom for Kesha, telling her that he was hungry.

Tyson got half of my morning soda and a peice of cheese to pasify him until I could get Jared out of bed.

Today we got food stamps so our kitchen doesn't have much of a selection.

I got them fed, they ate PB&J for breakfast. I hate feeding them crap but we didn't have much to choose from and it's not like they would have given me time to make something nice anyway.

After Tyson ate we jumped in the tub so I could try to get the slime out of his hair. Jared was still eating and started banging his cup on the table while I was washing the slime out of Ty's  hair. I tried yelling to him and explaning why I couldn't come in there, eventually I gave up and listened to him bang and yell.

His cup was empty and he wanted more water.

After the bath I called a family member to see if Jared could hang out for a while so I could run some errands. Everyone had plans for the day so the whole maybe tomorrow junk.

I was a little miffed so I decided to continue my plans, with Jared and Ty in tow.

I went through the process of getting everyone cleaned and dressed. I had to pack the universal diaper bag and gather all the paper work, checks, and whatever else I needed to take with me.
I had to make several phone calls so I talked on the phone for a while after I got everyone loaded up. I swear it's so hard to talk on the phone and take care of business when Ty and Jared are getting into things and yelling. With them strapped in the car they were safe and quiet.

When we pulled out of the drive Jared claimed hungry again so I got him and Ty a fish plate to share while we were in the car. At this point I still hadn't eaten anything so I settled for a few fries.

We went to the DHS office to turn in the application for AAPD. When I got there I realized that I left the completed app. at home. I didn't feel like fighting lunch traffic so I just picked up another one and filled it out in the car while feeding the boys.

I went to the Social Security office again to ask about Medicare. They keep telling me I can't apply until Jared has been on disability for 2 years. My mother in law refuses to believe it so I went back just to have them tell me the same thing, again, and my mother in law still dosen't believe it.

I needed to make another phone call so I stopped back by the house to look up the number on the way to Wal-Mart. I called the mental health center and asked them to give me a Rx to help me sleep. I'm tired and I just can't sleep. They had to call me back, they never did.

So then we all went to Wal-Mart to by food. I have to say by far it was the worst trip ever.

Tyson starting trying to get down from Jared's lap so wound up having to put him in the cart. With Tyson in the cart he kept pulling stuff off the shelf and putting it into he cart. When I turned around to get on to him and put the item back Jared would start grabbing things off the shelf that he wanted. Each time I stopped to get something, so did they, and we repeated the process of putting everything back. Eventually Tyson started trying to open stuff so I had to take him out of the cart. I let him push Jared's chair to keep him occupied. When I stopped to get something Ty would take off with Jared down the aisle and I would have to run and catch them. I wound up putting Ty in Jared's lap again only to have him throw a fit to get down. Jared got mad because Ty was being loud and then he went into his own fit of yelling and swearing.

At this point I was stuck. I wasn't really sure what to do so I put Ty on my shoulders and continues pushing Jared and pulling the cart, shopping along the way.

This worked fine until we got to the produce. Jared was reaching for fruit and Ty was yelling "nanna nanna nanna" and poking me in the eyes. He was trying to get down so he was just straddleing one shoulder and hanging on to my hair like a spider monkey.

The people in the store were staring at me, not sure if they should feel sorry for me or laugh as I take turns telling Jared not to eat the fruit and telling Ty to stop pokeing me in the eye.

Then Ty started putting his fingers in my mouth, I couldn't talk because he was pulling back on my cheeks.

Well, at this point I'm ready to fall out in the floor laughing or crying so I grabbed the last few thing we couldn't live without and went to checkout.

While I was putting all the food on the belt Jared took off in his wheelchair. I wound up having to hold onto Jared with one hand and unload the cart with the other.
The girl behind the register lost her composure and asked how old Ty was. I laughed and said 2 and she hurried things up.

I got the boys, the food, and the wheelchiar in the car and headed home. I unloaded the food, wheelchair, and the boys and went inside. Ty was screaming wanting food, Jared was yelling that he was hungry again so I had to stop and make another set of PB&Js for them.

I take a bite of each for my second meal of the day.

As I start to put up the food I realize Ty must have dumped out my seasonings on the floor while I was getting dressed. I couldn't stand the grit on my feet so I stopped and cleaned it up.

Before I finished putting everything up I stepped on a blob of jelly, again I had to stop and clean that. I still haven't finished putting up the canned foods or boxed food.

My mother in law called at some point to talk about the information I got from the phone calls today. I stepped outside to let Ty play in the yard so I could talk. When we hung up I walked in see what Jared was yelling back and set down my phone. I went back outside to get Ty out of the tree and when I went to go inside I was locked out.

I had moved the lock (like hotels have with the flippy thingy) up high because Ty had locked me out, and thankfully was smart enough to let me back in. I guess when I moved it up higher I didn't do something right so it wound up locking when I shut the door. I had no phone and I couldn't get it unlached because you have to close the door to do it. I gave up trying to figure it out and kicked the door open. It took a few hits because I wasn't wearing shoes.

I tried to relax on the couch for a bit after that but Jared kept calling Kesha over for no peticular reason. Tyson wouldn't stop climbing on me wanting to play. I was so fustrated at that point I was in tears.

It had been a hard day and it wasn't even close to over.

I set Jared up in the recliner thinking he would pass out if he watched TV for a while. I stuck Ty in bed and prayed that he would nap just for a little while. It was too late for a nap at 5:30 put I needed a break.

I went to my room and tried to cry. I couldn't so I settled for a nap.

I woke up around 7 in a panic, Ty was crying ready to get up. When I first wake up I panic because I'm not sure how long I've been asleep. I checked on Jared, all was good so I started thinking about dinner.
I decided to go the quick and easy route because the boys were starving again. I made pork chops, green beans, and mac 'n cheese. We ate and I put Ty back to bed at 9 so I could clean up and wash dishes.
I baked cookies and muffins while I washed dishes and cleaned the kitchen. I cleaned out the fridge before I put the food up so I had a lot of stuff to wash. Jared called Kesha repeatedly and told her he wanted cookies and candy.

Finally we were able to sit and eat warm cookies with milk. When we were finished I gave Jared a bath.
I guess he got mad because he was cold and bit me on the top of my head when I was trying to put him in bed. We talked about why he was mad and I let him calm down. Finally I got everyone to sleep so I could have a little me time.

Ugh, what a day. This is for those of you who wanted to know what a day at our house looks like. They aren't always this crazy but it happens often enough.

I swear if Janet Enovich wrote a book about Joe Morelli getting brain damage and Stephanie Plum was his caretaker she could get her insperation from us.

August 29th (delayed update)

The past few weeks have been, interesting, to say the least.

Sunday 8/29/10

We were going to Jared's grandmother's for her birthday lunch. I knew we had a long tiring day ahead of us so I decided we would stay in bed watching TV until it was time to get ready. Breakfast in bed is never a bad thing, well, that's what I was telling myself at the time.
I was sitting at the computer, Jared was laying in bed watching TV, and Tyson was running all over the place doing what Tyson's do. He loves to climb up the foot board of my bed and then jump around.

I heard the tink sound of something going into Jared's mouth. Tyson is always taking little toys to Jared and if he doesn't stick them in his own mouth Tyson does.
When I walked over to see exactly what was going on I saw a penny resting on the back of Jared's tongue. I wanted to reach in and grab it but Jared bites, I knew that wasn't going to go well so I quickly wracked my brain for ideas. Ultimately I decided to roll him over and let it drop out, no, he's too close to the edge of the bed, he will fall. Then I decided to sit him up, leaning him all the way forward should to the trick right?
Ummm, no. He swallowed just as I was sitting him up. Crap.
I knew it wasn't a big deal to swallow a coin, kids do it all the time, right? I called Jared's mother, yes she would know what to do. She laughs a little and tells me it should be ok, and defers to her husband who once upon a time was an Army nurse.
I reminded them that Jared has bowel issues and tell them that I don't know if his slow moving bowel can pass the coin. Well at least not in a reasonable amount of time anyway.

I consulted the BBC moms for validation before disturbing the on call doctor.

The doctor on call must have thought I was a nut job. It is so hard to explain Jared's condition to a new person or doctor. After asking me a ton of questions, is he breathing ok, can he pass gas, ect. he told me everything should be fine with a hint of "Why did you call me??" in his voice.

We enjoyed the rest of our day as planned.

Monday 8/30/10

I had an appointment with a phycologist to get some medication to help me sleep. I missed my last apointment and had to reschedule so I was really looking forward to this vist. I've been sleep deprived for far too long.

I always make plans to have Jared's aide sit with him and I get a family member to take the kids when I have apointments for just me.

Jared's grandmother picked Tyson up around lunch time and I started getting ready to go to my apointment. I try to make myself look put together when I go to therapy and I wanted to make the same effort for the phycologist. God forbid I look slightly askew and be slapped with a crazy lable.

I take my time and straighten up the house a bit as I wait for the aide. Jared is hanging out in his PJs, he normally does when we have no where to go.

2pm rolls around and the aide dosen't come. My apointment isn't until 2:15 and she knows that, maybe she's running a bit late.

2:10 comes and I pick up the phone to call the home health office. While I was looking up the number I realized that they were probably not going to be able to solve anything within the next 5 minutes so I dropped the phone and raced to dress Jared.

It would take much longer than 5 minutes to find a family member to sit with Jared. The mental health clinic has a $25 no show fee and I couldn't afford to miss the apointment or have to reschedule it and miss another week's worth of sleep.

I slapped clothes on Jared and was unloading him at the clinic at 2:22. I am Super Woman!

I think it freaked the woman at the desk out when I raced Jared up to the counter, half out of breath, and explained that I was running late.

I swear me and Jared would have started a riot in the mental health clinic if she rejected me or made me reschedule.

She didn't and I was able to see the doctor.

I aplogized to the doctor after introducing Jared and explain I had intended to come alone. He spent the next 30 minutes explaining to me that he wasn't quite sure what my official diagnois was but that he was going to give me a medication that should help with the symptoms I was experienceing. We talked about dosage and how often I should take it, he wrote me a prescription and we went on our way.

I decided to go to Wal-Mart to fill the prescription so that I could refill it anywhere if I have to travel. We need some groceries and I had to cash a check. I dropped the prescription off with my new medicaid card. I wasn't sure if it was going to cover prescription costs because I had just gotten it and it isn't part of the standard medicaid program.

We shopped and enjoyed being out of the house for a bit. I pushed Jared with one hand and pulled the cart with one hand behind us. We chatted with a woman whose son had a spinal chord injury. I think she may have thought Jared had an SCI at first. Her son was around the same age as Jared and I think her heart stung with a familiar pain when she saw us. I expained Jared's injuries and she gave me her information. She left us with an open invitation to visit and telling us that her home was fully handicap acessiable.

Our last stop was the pharmacy. When the lady pulled my perscription up she said "You do know this is $527.00 don't you?". Ummmm, no my insurance didn't pay for it? "No.", "Well then I need to make some phone calls and come back.".

I called the clinic as I loaded Jared into the car. They were going to close in 15 minutes and they weren't able to help me that day. She asked me to call back the next day.

I was crushed. I needed a full night's sleep so bad. I had bee so excited to finally get some help. My heart sank deeper knowing even if they gave me a cheaper prescription I wouldn't be able to afford it if my insurance didn't cover it.

Tuesday 8/31/10

I woke up and waited until late morning to call the nurse back and ask her what could be done about the prescription. She told me that she had simply forgotten to ask the doctor and told me to call back the following day. I asked her if there was finacial aide for people that couldn't afford medication and what I had to do to apply for help. She told me that I could apply, I needed proof of income and a statement from my insurance provider stateing that it would no cover prescriptions.

Fine. I hung up and called the local DHS office. They told me that my medicaid "spend down" should cover the medication. At this point I was so fustrated I spilled all my government assistance woes to the lady on the phone. She wound up giving me the number of a man in another county that could possibly help me with a program called AAPD.

I spent the rest of the day digging up infomation about the AAPD program. Eventually I connected with a lady that took our information and told me that Jared should be eligiable. She said she was sending me an application in the mail and that I needed to fill it out and turn it in at our local office.

That evening I sat at my computer to send and email. Tyson swarms me like a tiny shark and plays with whatever is in a 10 foot radius of me. Usually our time in the bedroom consists of him climbing up the foot of my bed, and jumping at the foot of the bed. After about what seems like 3 seconds he climbs down and repeats the process. I watch him in the mirror of my desk/vanity.

The moment I realized he had slipped past me and down the hall was the moment I heard a discusting thud in the living room.

As I ran into the living room I ran into Tyson who was running to me. The shock was wearing off and now he was scared.

Jared's lift chair was up and I knew instantly what had happened.

One of them was playing with the remote, the chair lifted, and Jared fell onto the floor.

As I rounded the chair I was proud to see Jared sitting up with his back against the couch. He was holding his butt off the ground with his right hand. His eyes were wide with a paniced expression, I felt horrible.

This is the process in which I deal with Jared falls:

  1. Ask if he is ok, he nodds yes so far.
  2. I ask him if anything feels broken as I visually acess his damage.
  3. I pull the wheelchair over and get it ready for a transfer, depending on the location of the fall.
  4. If Jared isn't wearing shoes I might decide to put shoes on him for better traction. This depends largely on the location of the fall and injuries.
  5. I place his right arm around my shoulders with my left arm under his left arm. I lift and drag him into the wheelchair.
  6. I imediately turn into the paniced annoying wife that asks a million questions. I ask him if he hit his head first and then we move down the body talking about any injuries he may have acuired along the way.

  7. Call Nicole.

Nicole is one of my best friends. She's an RN and she has been here since day one answering all my questions. She will tell me what she thinks and knows, she will tell me if she dosen't know, and she's willinging to look at any picture I text her. She honest, blunt, and she dosen't cry.

Jared hit his head on the table when he fell. He had a slanted cut across his forehead and it was bleeding. I questioned Nicole about it, texted her a picture, and we both decided it was minor. I patched him up with antibacterial ointment and a band-aid.

Next I had to call and report the fall to my mother in law. She was upset and wanter to send her sister (a nurse) over to check on him. I declined and told her I called Nicole and sent her a picture.

(Please forgive me, I'm finishing an update that I didn't finish several months ago. I don't remember all the details.)

Wednesday 9/1/10

I called my sister to come get Ty because I had an all day doctor's apt. with Jared the next day. I thought it was going to be awesome to have a semi relaxing evening at home with no kids.


We took a late nap so we had a late dinner. I gave Jared an apple to snack on before bed and he got choked on it a little. It wasn't really a big deal, he was coughing on his own, I wound up taking what was left of the apple in his mouth out so that he could cough easier. He settled down after a few minutes so I thought everything was ok.

About a half hour later, by then it's after 11pm, I roll Jared into the bathroom for a quick shave before we go to bed. We had an early day the next day so I thought I would get it out of the way.

He starts coughing when I ask him to hold his chin up so I can shave his neck. It sounded terrible like he needed to get something up and he couldn't. I leaned him all the way forward thinking it would help him cough whatever it was up. Mucus started running out of his mouth and I leaned him back to clean him up.

That's when I saw it.

The apple. It was a huge peice of apple and it had been stuck in his throat this whole time! When I took it out of his mouth I saw that it had a little blood on it.

I freaked out. I made sure that he was breatheing ok and rushed to get the phone book and the phone. I called the ER and told the nurse what had happened and asked her if I needed to bring him in. She said he was probably ok but I needed to watch him just in case. She told me to bring him in if I wanted to, or if it would make me feel better.

As I'm haning up the phone I hear a crash in the bathroom.

I ran in to see Jared laying in the floor. I don't know why but he fell out of his wheelchair and crashed into the toliet and landed on the hard tile floor.

I scooped him up and put him in the chair and checked him out. He said his side hurt and he had some scrapes on his knee. There was a red mark on his hip but he said nothing felt broken.
I decided to take him to the ER even though I knew he was ok. I just couldn't imagine telling anyone this story and ending it with "No, I didn't take him to the ER.".

I had to get both of us dressed and pack a bag with diapers, wipes, medical information, ect. and off we went.

The lady that checked us in asked if the gash on his head was from the fall from tonight, I told her no and that was Tuesday's fall.

We went to sit and wait. I looked at Jared all banged up and realized it must look like I beat him. I called another friend and told him if I went missing it was because they put me in jail for beating Jared.
Jared started making the poop face. I rushed him to the potty and he took a nice poop. I wanted to cry because I NEEDED that poop to look for the penny.

We went to have his vitals taken before they took him back to his ER room. His temp was 94. The nurse said that couldn't be right and retook his temp probably 15 times. I told her that his temp was always low because he was dependant and brain damaged. She said even so that's way too low.

She got us warm blankets and we waited for the doc.

Thankfully I knew the doctor. She is married to the minister that married me and Jared almost 3 years ago. She knew me well enough to know I didn't beat Jared. She agreed to order a chest x-ray just to ease my mind. She said if he aspirated any of the apples we wouldn't know for a week or so. She said he would get a fever and a respitory infection.

The x-ray showed nothing but the BB that was embeded in Jared's chest from when he was a kid. She was concerned because she thought one of the kids had fed Jared something metal (I told her I was still looking for the penny).

Jared spent the whole time telling me that he was hungry and he wanted to eat cold soup and bread. When I didn't produce cold soup he started calling for Kesha.
So everything turned out just fine. Well so far anyway. We got home and Jared had his cold soup, we finally got in bed at 3:30am.

* This is a delayed post. I wrote It back in early September and never published it. I wanted to finish it because I felt it was important to show just how hard it is sometimes. It also contained information that leads up to the current update.