Getting Back to Normal

Avery is back in school for about 6 hours a day and he went back to youth group tonight.  I picked him up early because I didn’t want him to over do it.

When we got home he was crying.  Zachery came and got me and said
“Avery is crying on his bed and he didn’t fall out.”  I think it was the pizza and the lasagna. He still has really bad reflux but it’s getting better. 

He said he couldn’t go back to school or ever go to youth again.  I know that in the morning he will feel better and will see that it’s ok to get tired and it’s ok to get a tummy ache and he will see that even when he feels bad he will feel better.   

If I could

I would put my son in a bubble and keep him safe.  I told the Rheumatology fellow that before we left the hospital on Friday.  He looked surprised, he doesn’t have kids.

Avery goes back to school tomorrow.  He is doing so much better, his pain is minimal and he’s moving great.  He doesn’t want to go back to school, he’s scared but he can’t tell me what he’s afraid of.  I know he had a really rough time last week, he was in a lot of pain.  A lot more pain that I knew. He was getting sick quickly from his first set of pulses. 

That isn’t the case this week.  He is upset about his hands.  They are pealing so bad and he said he is embarrassed.  We told him how much his friends miss him and how much he loved school.  I told him he could have his teacher call me if he was in pain, that he won’t have to stay there if he hurt. 

But honestly there is a part of me that just wants him to stay home.  I am ok with taking care of him for the rest of his life.  Except I know know he never wanted that.  This child has wanted to move out for over a  year, until recently.  Now he said he doesn’t want to leave. 

My sweet boy is afraid and it breaks my heart.  But I know that the sooner he goes back the easier it is going to be to overcome that fear.  He has been fearless his whole life.  My child could climb onto the counter before he could walk.  He has been afraid of nothing his whole life.  Now he afraid to come home from the hospital and afraid to go back to school.  Maybe he is mostly afraid he won’t be able to, that he will fail.  That is what I would be afraid of, that he won’t get his life back.  So I have to help him get it.

A great Dr’s visit!

We had a great visit today with the Rheumatologist, no hospital admission!  Avery is having some pain but not too bad, this is the first time they have seen him able to walk. 

There is still a chance we will have to go back to the hospital and have more pulse therapy before the rilanocept is working all the way, but not today!  We are going to try school again tomorrow.  I’ll take him after Zachery and let him stay a couple hours.  Hopefully next week we will be able to do half days.

I suck

Avery started throwing up at about 4:00 this afternoon.  He was being crazy dramatic with it and wouldn’t get up and go into the bathroom.  I yelled at him.  If you know you are going to throw up get up and go into the bathroom, don’t puke on the couch and floor! 

What kind of person am I?  I felt like he was not hurting, he was walking good, he is throwing up, just go into the bathroom.  I know I tend to be dramatic too when I puke.  Ok he gets it honestly, but I do go to the bathroom.  So now I feel like crap. 

We don’t know why he’s throwing up and the Dr is concerned by the amount of steroids he’s taking that it can mask things.  Now we’re waiting to see if he keeps it up and can’t keep anything down.  I just wanted it to be a stomach bug, and I wasn’t yelling at him at much as I was yelling because it just won’t end.  I want him to get well, I don’t want him to have to go through all this.  And as Mike reminded me tonight he got this lovely disease as his 17th birthday gift. 

God heal my son.

I’m trying not to ask

As hard as it is, I am not asking Avery if he is in pain or if he hurts all the time.  We are three days out from the last pulse therapy and loading dose of Rilonacept and still pretty much pain and rash free.

He is sore in the evenings and still can’t walk at Walmart but some of that is cardio.  He is getting his strength back, so that is wonderful.  He’s still having stupid sweats, I know because he’ll yelling about that now.  And we now have the red hands and crazy pealing going on. 

Another weekend

We left the hospital Friday afternoon after the echo.  The echo showed no change, which is a huge disappointment.  I am not sure what it means and our Dr is checking with the Cardiologist for me to see what to do next.  We stopped for pizza on the way home.  The woman there said weren’t you here last Friday on the way home from the hospital. lol  Avery was well enough to go in with me this time. 

He had to sleep on the couch it was more comfortable with his reflex pain.  They doubled the nexium and he’s still taking the tums but it’s more controlled now.  Saturday I had to take Zachery to the Dr.  He had a sore throat and threw up.  It seems like it is just allergies and he’s on daily nose spray and allergy tabs now. 

Zachery and I did a little shopping on the way home from the big city!  After we got home we got ready and took Avery to his birthday dinner at Red Lobster.  He talked about it so much in the hospital and before he got sick.  He has been wanting to go there for a long time.  He wanted the shrimp, crab and lobster and loved it all. 

It was the craziest thing when we got to the restaurant the woman asked how many kids menus.  I said just one so she gave the guy 3 adult menus and one child menu.  We get to the table and he asks who gets the kids menu.  Mike and I both said, “I do!” lol  So the guy hands it to Avery and not Zachery the 6 year old!  So we say oh the 6 year old gets it. lol  And he walks off deciding Avery didn’t need any menu.  So I asked if he could have the one he had in his hand!  Seriously are people that stupid?

Sunday was a great day.  Avery went to church with me.  As we got into the car, I noticed that Belle looks like she’s been shot on the side.  She seems to be doing ok and it’s just a small chunk so I hope she will be ok. 

Everyone was excited to see Avery at church and he was happy to hear people praying for him.  He wanted a donut and told me that blueberry donuts are God’s blessing. lol  He might be right.

By Sunday evening he is starting to have the shoulder and joint pains.  His hands are red and pealing from the tips of his fingers.  Not sure what that means but I’ll be calling the Dr in the morning.  I took his blood pressure and as typical for him it was all over the place.  I’m keeping a log of it.

Rilonacept

I gave Avery his first 2 shots on Friday afternoon.  I found out the box was delivered to the hospital at 9:37am and it took till noon to get it to his room.  I’m so glad I called and found it!

He did great with the shots.  It wasn’t as bas as I thought giving them.  The medicine was way harder to push that I would have thought but the sticking was easier. 

After I gave the shots, and he was fine, I started crying.  I just couldn’t stop.  I turned my back so he wouldn’t see and the tears just ran down my face.  The nurse who’d been teaching me how to do the shots came in and asked what was wrong.  She told me I did a great job.  Wow, I don’t want to do a great job, I didn’t want to have to do a great job, I didn’t want to have to give my child a shot for potentially every week of the rest of his life.  I want this to all go away. 

Waiting

It seems like we are always waiting.  Today is Friday and we are waiting on Avery’s new medicine to be delivered to the hospital.  We have a lot of hope in this very expensive medicine. 

The Dr’s told me yesterday it won’t work as fast as the Anakinra, it might take a month.   We might also have to have a couple more pulse therapies in the mean time.  I can deal with that, it’s way easier if we know we might have to go back to the hospital for three days than to be surprised. 

The medicine should be here by fedex by 11:00 am.  I have 3 hours to wait. 

Nurses

I have to say that Children’s has the best nurses.  They have been incredible and have been the first advocate for my son after me.  The quickly get to know him and know what is normal for him and if that changes they are getting us help.  I can’t say enough good things about the nurses on B4 and B6.

The Sticker

Children’s Medical Center has a policy that they give every person who don’t work here a sticker to wear. The first time we came into the ER the sticker people weren’t at work yet. So we spent 14 hours in the ER before going to our room. Right before we went up to the room I ran out to the car to get Avery’s bags.

He was a pretty sick puppy and I had to leave him alone so I was in a big hurry to get back to him. As I passed a desk, a woman asked if she could help me, I said no and hurried by.

I spent several days in the hospital with him before I went back to my car. Now I had been all over the hospital without a problem. So when I came back in, again a woman asked if she could help me. No I said I was good. She wanted to give me a sticker. No I was good and knew where I was going and really I do shower and change clothes every day did I really need to come to the front door and get a sticker every day?

So we were discharged after 15 days and went home for our 26 hours before coming back to the ER. Again it was the middle of the night and we were rushed to a trauma room with chest pains and him passing out so there wasn’t anyone at the sticker desk. We stayed for the three days and after taking his belongings to the car and coming back only to return the cart to the nurses station they wanted to give me another sticker. Ok seriously at this point stick your sticker I don’t want it and I’m not going to wear it. We’re leaving, I don’t need it, it’s stupid.

Five days go by and we find out we are being readmitted. Again Avery can’t walk and is in severe pain. We leave Texas Scottish Rite where our clinic visit is and head to Children’s. Scottish Rite gave us a wheelchair to use and when we were leaving she told me I could take it to the car and leave it in the lot, that security would pick it up. When we get to Children’s I have to leave Avery at the valet stand and find a place to park. I can’t afford valet parking and we are going to be here for three days so off to green parking I go.

So twenty minutes later I have parked the car and am trying to get across the sky bridge to get my son. Honesty, I am a little worried leaving him alone for so long. One he is in a lot of pain and two any thing could happen to him. I didn’t do real well with the sky bridge cause I’m waking on the part where the cars drive across. lol Our bags are heavy and I’m realizing I should have left them with him when I dropped him at the door.

I find Avery and make it into the hospital. I am trying to remember if admitting is on that floor or the lower one and someone at the big round how can I help you desk asked if they could help me. Now they are at least 30 feet away and I said I was looking for admitting. She points to where it is but says I must come to her first. I said I have to go all the way over there? I’m freaking tired, this is the second hospital today and I’ve just made a journey from the parking garage and my son can’t walk.

So I walk over and she tells me she has to give me a sticker! Seriously, you need me to have a freaking sticker. You called me and my son who can’t walk over for a sticker? I said whatever I’m not wearing your sticker, my son can’t walk can we get a wheelchair? They are so rude, they mumble about the wheelchair and say something about they need to know what room we are going to in order to check the wheelchair out to us. I’m sorry I don’t know what room we are going to, remember we are on our way to admitting. So she wants my cell phone number, oh crap I left my cell phone in the car! It’s miles away in the parking garage. ahhhhhh So I asked did someone want to go to green 4c and get my phone out of my car so they could call me on it? Ya, no takers on that one. So they write down my name and the wheelchair number and tell me I have checked out this wheelchair. A very nice man walks up and helps me with our bags and the lady pushes Avery to admitting. I set everything down, including my bag with the stupid sticker on it and run back to the car for the phone.

As I come back in the hospital, the same people ask if they can help me. This time I just say no thank you I am fine. They are yelling they want to give me a sticker and I say I got it you just gave it to me and they yell I’m not wearing their sticker. Ok at this point let me say that Hell will freeze over before I wear that sticker.

I have spent 18 days here and had three admissions over the past 3 weeks. I am here because I have a very sick child. I’m not here for a vacation, I’m here because my son was just diagnosed with a chronic illness. We have been followed by seven different ology’s and I have spent 3 weeks of terror worrying about my child and you are worried about me wearing the second sticker you have given me in 5 minutes when you know you gave it to me and that I just had to run back to the car for a phone and have once again left my child alone in your hospital!

I ignored them and went back into admitting because I really don’t have time for your nonsense. I need to get my son checked in so I can get him into a room so I can get the medicine started that is going to take away his pain and make him able to walk again. Moments after I sat down, three, yes three security guards rush into the room and start looking around. Ya they called security on me. I got up and said, “seriously”? “They had just given me one sticker and I didn’t want a second one,” as I showed him the sticker on my bag. The security guard looked shocked and said that is not what we were told! He suggested I call someone and complain.

Security left and we got a room assignment and headed to the floor. The nurse got him out of the wheelchair and took it. I almost asked for a receipt.

At 9:30 pm, about 7 hours after we came into the hospital, the phone in the room rang, and I answered. The voice on the other end told me the wheelchair I’d checked out hadn’t been returned and they wanted it returned by 9:30. I think my head almost fell off. “You’re calling me about the wheelchair, seriously?” I told them the nurse took it and I would go talk to the charge nurse. As I got to the nurses station, the phone there rang. I told the charge nurse what was going on and she was shocked. She said she would look for the wheel chair and not to worry that if they called back tell them to call her. She came and told me they nurse had the wheelchair because Avery needed to go to x-ray and he couldn’t walk.

Now I get wanting to know the people in your hospital are there for good intentions. But I have a sticker on that says B4, because I have a child on that floor I can still go anywhere in the hospital. Tons of people are walking around with stickers that say admitting or ed and they are in a room on a different floor. So how about some compassion? Isn’t this a Children’s hospital. We’re here because we have sick kids and if you see a child can’t walk and needs help do you really make them walk further so you can give their mom a sticker? Couldn’t she have brought him a wheelchair and helped us to admitting and then brought me a sticker? Don’t I really have more to worry about than a sticker?

Am I still in Holland?

Remember Emily Perl Kingsley’s poem about having a child with down syndrome?  It’s like being on a trip to Italy and getting off the plane and being in Holland.  Holland is not a bad place just not where you were headed.

It seems I got back on the plane to Italy.  We were rolling right along with this whole down syndrome thing and even had another child instead of being too afraid to.  But life was good, ok life was great.  We were happy and enjoying life.  I was rocking right along and feeling kinda safe.

Then I guess I thought I was heading back to Italy and instead my son’s foot started to hurt.  Now not only does he have down syndrome he, we have to deal with a chronic illness.  Seriously, not what I thought would happen. 

I really thought we got our deal of the deck.  I thought he had enough to deal with.  I guess I was naive, presumptuous, stupid or even relaxed.  Now we have to figure all this out again.  And I have to look around and figure out where this plane landed.  

Waiting for Wednesday

Tomorrow we go to the Rheumatology clinic as an out patient for the first time.  I was told to bring a bag in case we have to be admitted.  I have been doing laundry and cleaning house incase Avery and I don’t come home after the appointment. 

My cousin Laura keeps a hospital bag packed.  Her son Alex has frequent admission.  Laura I don’t want a hospital bag on standby!  But I am going to pack one and hope I don’t have to use it.  I even bought some hospital clothes at Family Dollar yesterday. 

I wish I could look at him and know what was going on inside his body.  I wish I could run labs at home. I wish it was 5 weeks ago and my son was health and we had never heard of systemic onset juvenile rheumatoid arthritis.

My church

Is amazing!  We are so very blessed to be a part of it and so very loved. 

Tears

They come at most inopportune times.  Like Sunday during mass.  I was ok and something set me off, then we got to peace be with you and I got hugs.  Seriously I lost it then.  I do not do well with sharing my pain.  I would much rather sit in a corner and lick my wounds.

I cried during Criminal Minds, when the girl was found hanging onto the buoy.  All I could think was what a fighter she was and how my Avery was a fighter.  I cried at a bookstore today.  I am not a weepy person.  I don’t walk around looking sad and weepy and I seriously don’t share my pain.

I do share my anger.  With anyone who can hear my voice.  That I am good at.  And I am angry but mostly I am sad and completely scared. 

Back to school

Avery went back to school today for an hour and a half.  He cried he was in pain.  This about killed me.  The whole time he has been sick he has barely mentioned he hurt.  So for him to cry, he was in a lot of pain.

Tomorrow I am going to give him tylenol before school and see if that helps.  I hear mornings are bad.  He come home and took a nap and felt better.  A hot bath also helped. 

I am afraid that the return of the pain and rash is a sign he’s not doing ok on the dose of prednisone he is on.  He has to be able to maintain for four weeks to qualify for that study. 

It is in God’s hands.  I know this.  But God it would be a little easier if you let me fix it. 

All is well

We are annoying our children!

I never wanted to be a tough mom

I swear when I signed up to be a mom I was going to be all lovey, huggy, and babying.  But when I had my first child, God had another idea.  Not being tough wasn’t an option. 

When Avery was born we decided we wanted everything for him.  We wanted him to grow up and be everything he wanted.  We wanted him to live independently and have a job and hopefully a wife one day.  So being all lovey, huggy and babying just wasn’t going to work.  We had to set the bar high and help him to it.

I remember when he started PPCD on his third birthday.  I was heartbroken.  All I could think was all the other moms got to keep their kids home but I had to send mine to school.  I didn’t just get to keep him home and play with him and love on him.  But we did what was best for him and have tried to do that since.

Now I’ve got this down.  I encourage him to do things that will help with his life and the future he wants.  I have fought for all of that for years.  He is so excited to get a job and move out.  And as hard as that is for me I will make sure he can do it.

Then something happened, my son was diagnosed with a chronic illness.  The medicine they are giving him weakens his immune system and now I once again don’t want to be tough. I want to wait on him and put him in a bubble. 

I don’t want to tell him to walk to the bathroom, to get up and throw away his plate.  I want him to just sit there until he feels better.  But I know that the only way he will get his strength and stamina back is to get moving.  I don’t want to send him back to school because I don’t want him to get sick.  I want to keep him in the house and protect  him. 

But I am not going to do that.  I am going to drive him to school Monday and let him have at least a couple hours there.  I am going to encourage him to get himself something to drink.  I am going to be a tough mom, no matter how much it hurts.  I am going to fight with everything we all have to help him get back all the things he has and help him to get all the things he has always wanted.

Great to be home

This time at home he seems so much better!  The pulse treatment is amazing, too bad it’s not something we can do all the time.  He’s back on daily prednisone tomorrow.  We go to see the Rheumatologist on Wednesday and she said to bring a bag incase he has to be admitted for another pulse treatment.  I’m ok with that, it makes it a little easier knowing something is possible.

Avery and I stopped at Best Buy on our way home from the hospital today.  We bought Iron Man 2 and a Wii.  He did pretty good, I did have to get a wheel chair for him to leave.  He’s walking so much more but I know it’s going to take time to build back his stamina after being in bed for three weeks.  It was fun being in his favorite store, I just can’t wait to take him there when he has more energy. 

Zachery did better this time and he was way excited to see the Wii. lol  We will hopefully have a few normal days.  I am thinking of taking Avery back to school on Monday.  I was thinking that if he has to go back into the hospital next week it might do him good to see his friends and get some normal back.  He hasn’t been to school since September 3.  Of course I want to put him in a bubble and I worry about his immune system and the fluid around his heart but we have spent his whole life fighting for him to be all he wants to be and I just can’t give it up now.

Thanks Troy!

For not only being a great quarterback and a hunk but for making it a better place here at Children’s for teens.  Avery walked down to the Aikman end zone last night and played video games for an hour.  He is still talking about going back. 

For those of you keeping score, he hasn’t walked that far since September 11 and hasn’t played video games longer.  I want my son back and I am starting to see signs of him!

26 hours

Is how long we were home before we had to come back to the hospital.  I could tell Avery was uncomfortable but he wouldn’t tell us what was wrong.  By 8:45pm he was having chills and starting a fever spike and he had joint pain.  I sent him to bed hoping he was just overly tired.  By 10:30 he had fever and I called the Rheumatologist on call. 

We came back to the ER.  He was rushed through because of the fluid around his heart and the fact that the blood return on his hands and legs was really slow.   We were taken right into a trauma room and things happened pretty quickly.  It was a little scary to watch.  He got an EKG, chest xray, iv, and blood drawn within like 10 minutes.  His heart rate was crazy low and so was his blood pressure. 

When we first made it into the room he did the really cool thing of his heart rate dropping and his eyes rolling back and passing out.  They rubbed his chest and adjusted his head.  We made it back to a room by 4am. 

I got the bed from hell.  Seriously, I have complained about it from the second I sat on it and if I don’t get a new bed before I go to sleep tonight I will be getting myself a new bed.  My feet hang off from my ankle down, it is arch shaped and the top of the arch, where your back goes, is metal.  I hear they have a new part of the hospital with flat screens, I just want a bed.  Our room is so small we have to move things to walk around it.  I would make a terrible patient because I would complain about EVEYTHING! 

Avery has started high dose iv steroids.  He will receive 3 doses 20 hours apart and then hopefully we will be rid of all the scary stuff and on our way to maintenance and remission.  He is such a trouper!  Poor Z woke up and cried when he realized I was gone again.  If all works out we will be home on Friday. 

Home again, Home again, jiggity jig.

We left the hospital at 7:00 tonight.  I can’t believe how dark it is at night.  It’s so funny how much the street lights burned my eyes.  I haven’t seen dark in two weeks.  The hospital is never dark.

We got home and surprised Zachery.  I pulled up and honked a few times.  I could see him standing at the door.  Mike said he kept saying I wonder who that is.  I finally got out of the car and he said it’s mom and Avery, I can’t believe they are really home!  He ran to me and gave me lots of kisses and hugs.  Then hugs for Avery.  Even the dogs were excited.

We got Avery in and he laid down on the couch for a couple hours then I put him to bed.  He’s so worn out.  Mike is in there with him now.  He woke up and I can hear Mike asking him if he is ok.  I am not sure how I am going to sleep tonight.  I will try not to be afraid.  I just need him to be at least as good as he was in the hospital today.

We’re waiting!

For Rheumotology to do rounds and release us.  Ok I’m not packing yet. lol  But I really think we are going  home today.  I might have to sleep until they get here.

A great day!

We have had a great day.  Avery is really responding to the prednisone and having two doses a day will help.  His rash is leaving and his spirits are good! 

I am going to push to go home tomorrow.  We can monitor him at home and follow up in clinic.  And we get all new residents tomorrow. lol  So this is a perfect time to run.

He is so sweet!  They told me tonight they fight over him. lol  Everyone comments on his sweet manners.  The nurse told me that she just left a room where a two year old cussed her out to come into Avery’s room with yes ma’am and please and thank you.  So ya I’m proud. lol  I love that even when they are mean and wild at home my boys are respectful and polite in the real world.

Third dose of Prednisone

We had fever at 9:00 when the prednisone was due.  I was so totally not surprised.  His first dose was given at 3:30 pm on Friday and the second at 9:00 am on Saturday so this was the first full 24 hours we have gone. 

The Rheumatologists have been in and have decided to double his steroids.  We’ll get 60mg twice a day now.  I think that will help. They also told me that his liver function tests were coming back high now but for now he can keep getting the tylenol if he needs it, they think it’s part of the systemic disease.  Renal has already taken us off all NSAID’s because of his kidney tests.  And he needs something for the pain of this rash.  The hope is that when the prednisone is working good he won’t need pain meds. 

It was funny this morning, Avery’s temp was 101.9 and the nurse looked at me and asked when did I want to start cooling him down.  Like with cold rags and ice.  I said oh not till it gets to 104. lol  What kind of altered reality do I now live in? 

Who does that?

We have a family fridge on our floor that we have been using for two weeks.  It has worked great until Friday night when someone ate all my lunch I was unable to eat and was saving for dinner. 

Since then they took Avery’s pediasure, boost and breeze that are nutritional supplements he needs since he has lost 10 kilos since coming into the hospital. The $7 worth of ice cream I had bought and my lunch/dinner I never got to eat and his chicken strips and yogurt he wanted me to save were all eaten.  I even caught the kids in there doing it, while they were eating all the popsicles and juice boxes for the patients.  They asked me if I wanted juice.  I explained this wasn’t juice I was getting it was food for my child since he couldn’t eat.  Ya it didn’t faze them at all they finished off his breeze.

Everyone is so very sorry, except for the people doing it.  The nurses bought Avery more rocky road and put it in their freezer.  Social work brought me food cards and talked to the family of the kids that are doing this.  They explained that if it has someone else’s name on it, that means it’s not yours and you don’t take it.  But  honestly that is not something that can be taught at 14! 

Butt Walk Massage

This horrible rash Avery has is so very painful, as it spreads he yells he is burning.  Well tonight it started on his butt.  He was begging me to get the nurse, I don’t know what he thought she could do that I wasn’t already doing but hey I’m game.  I had but some topical steroid ointment on it, yes the stuff dermatology ordered, and it burned more.  So I was using wet rags to cool him down and try to get if off.  This rash is like a severe sunburn and it is hot.

The nurse brought a different kind of cream and we tried that, well that burned more. He yelled for me to blow on it.  Honestly the nurse and I almost lost it laughing.  Here I am leaning over my 17 year old son’s butt blowing on it.  I know it wasn’t funny but, well you have to find the humor somewhere. That wasn’t working and by now he was pounding his fists on the mattress and crying, and yelling “I hate burn cream, what is that burn cream, I hate it”, so I said just get the morphine.  She put the morphine in his iv and he calmed down pretty fast. 

I picked up all the wet rags and washed my hands and went to get a cup of ice.  I was standing by the nurses station when we could here in very loudly saying, “ohhhhh yaaaaaaaaahhh!”  lol  Again all we could do was laugh.  When I got back into the room he was smiling and cheering and doing this squirm thing.  I said what are you doing?  “Butt walk massage!”  Every time I tell him to scoot up in the bed I tell him to butt walk back.  I guess the morphine was working and he was out of pain! lol 

Grace and Prednisone

Friday brought us relief.  I had asked the chaplain to find us a priest, the hospital’s priest was on vacation.  I wanted Avery to be anointed, so she found us one and he came at 3:30. 

"Is any among you sick? Let him call for the presbyters of the Church, and let them pray over him, anointing him with oil in the name of the Lord; and the prayer of faith will save the sick man, and the Lord will raise him up; and if he has committed sins, he will be forgiven" (Jas 5:14-15). 

The anointing was beautiful, it brought tears to my eyes.  Mike and the chaplain were here for it.  Avery was so out of it he really didn’t know what was going on around him.  When we all laid hands on him I honestly felt the stress leave my body, like God was just taking it.  I know that Avery needs God’s Grace and I feel so blessed that he received it.

The Dr’s also started the prednisone yesterday.  Mike was here for that.  He didn’t seem to understand why when the Dr said lets give him prednisone someone didn’t just pull it out of their pocket and hand it to him. lol  He went off on the immunology attending, whom I’d never met. 

I had to leave and go to Target to get Zachery’s birthday gifts and asked him if he was ok with that.  He said, “your the one leaving me with them.” lol  I warned Avery’s nurse that Mike had no interpersonal skills and that if anyone came in and asked about the rash would she please tell them what is had looked like, since my husband said it looked the same as when we came in. lol  I do love him but there is a reason I am the one here at the hospital and he is at home.

When I’d made it back to the hospital dermatology was in the room and they were asking Mike if they could biopsy Avery.  He told them he wouldn’t tell them they could do anything that could hurt him.  I am texting him saying if they think it will help tell them yes.  I made it back to the room and they were talking to the nurse at the nurses station.  I asked them my questions and they said they were recommending he be removed from all non essential medicine and ordering an ointment to be rubbed on his whole body!  Are they serious? lol  I said does it come in a vat? I told them the most essential medicine was the one that would put him into remission and was already removed and that only left tylenol and codeine since renal took him off of the mortin because of his kidney damage.  So they took their briefcases with wheels and walked away.  I seriously think I scared them.  They had to be first year.

Friday night we were fever free and had a good night.  I slept 4 hours straight which is the first time that has happened since we got here.  Avery was still on morphine, codeine, and benadryl for the pain of the rash but he was comfortable and not clawing at himself.  He was very surprised to find these marks all over his body.  I just cover them up and tell him they will be fine.

I don’t know if I can do this

Our day started with me picking him up off the ground from passing out in the bathroom.  I packed and cleaned our room and just wanted him to be home and happy and healthy.  But this crazy new rash, wo don’t know what it is.  So we stayed and didn’t get the anakinra.

So the rash is worse and he’s screaming his legs burn and he’s in pain.  Not 2 hours before that he was sitting up and laughing with me.  I felt so helpless watching him hurting and his hands swelling.  I just want someone to help him.  I keep talking to him in a calm voice and telling him to breath that it’s going to get better, but I don’t know that it is. I don’t know what is happening.  The machines are going off and the respitary theripist is there and they are putting him on oxygen and it’s only helping some.  I’m terrified because his hands are swollen and I don’t know what that means.  I’m afraid he’s going to swell so much that he’s going to cut off the blood to his hands and loose them.

I just want to scream at the Dr’s to help him, fix him.  All the while I have to be calm to help keep him calm.  It is so scary I don’t know if I can do it.  What if I make a mistake and he suffers for it.  The responsibility I feel for his life is breath taking.  It’s like everything rests on my shoulders and I have to process all this information because if I don’t think of all the horrible things that could be wrong no one will and something will be missed. 

Yet while all of this is racing through my head and my heart I am face to face with my precious boy talking to him, telling him it’s going to be ok that we are going to fix this and he just needs to breath and not worry. I just want to pull him into my lap and hold him.  I want to kiss it all away.

The other night I was holding him through a set of bad shakes and I remembered the song I would sing to him when he was a baby.

Put your head on mommy’s shoulders I’ll whisper in your ear as I hold you near Avery. Put your head on mommy’s shoulders I wipe your tears as I hold you near Avery.

MOM

That’s all I need to hear in a dead sleep to be up and moving.  Now don’t get me wrong, normally I’m one of those oh just give me a few more minutes or do you really need me kind of moms.  But here in the hospital as soon as Avery says it I’m grabbing the urinal or something. 

So a bit ago I hear MOM, BATHROOM.   I was up and moving the tray and taking off the pulse ox and helping him to the potty.  Got business taken care of and told him to stand up.  I said ok if you can’t stand you can’t go home today.  Ya in hindsight I feel like an ass.

So Avery stood in the bathroom and I told him to stand there a sec and I’d help him back to bed. I turned around to wash my hands and he passes out and has one arm in the toilet and is kinda laying over hit.  I try to help him and can’t so I reach over and put the nurse call button in the bathroom.  Of course the thing breaks off so I start pushing on it and yelling for help. 

Our nurse was right in with a couple other nurses and Dr G I because a Dr two months ago and know everything.  I told them it looked like he passed out.  He was upset and we couldn’t get him up.  I asked someone to hand me his cup and we could catch our breaths.  I gave him a drink and told him to breath. 

We got him up and back into bed.  Dr G left.  Uh I realize it’s nothing to you but you patient just passed out, think you’d want to do something.  So I went back out and asked the nurse to hook his pulse ox back up, since I’d ripped it off on our way to the bathroom.  And I wanted her to take a blood pressure.  I said I realize I’m not a Dr but maybe it had bottomed out again and we should check it.  I do think he will do ok at home.  We will take it easy and he won’t be on isolation, so he will be able to walk around.  Just hope everyone else sees that and that nothing else is going on.

Hoping to be homebound

A couple more Dr’s came in over night to look at Avery’s rash, which is pretty much all over his body.  I swear on of them got on their phone and googed rashes. lol  Our pedi will be here in a couple hours and he’s great with rashes so hopefully it is just more of the Still’s rash.

Supposed to be going home tomorrow.

And we have a new crazy rash that isn’t like the other ones and is in new places.  He’s now spiking a fever 5 hours after dose 3 of the anakinra.  I have no idea what that means or if it matters.  If I look at the whole picture, I think it has helped.  But now I worry he’s having an allergic reaction to it.  Dr G I’ve been a dr for two months and I know everything came in and had not a clue.

They are doing another culture because of his fever spike and being followed by infectious disease.  I really hope we are still going home tomorrow.  I wish my baby could catch a break.

Dose two

We made it past the 4:00 spike time with just a little fever of 100.4. Not bad and the Dr thinks we just need to work on the dose. He went 16 hours without fever and that hasn’t happened in 14 days. He got his second shot at 6:30 pm and spiked another fever.

I woke up to a nurse in the room about to draw cultures on him. I was like wait what is going on. I’d already told them no once at 100.4, it’s supposed to be over 102 before they do them. The nurse told me his fever was 102 something and he looked bad. His face turns red and yes it’s starting to look salmon colored. He was so clear before. So they drew the labs and off they went.

There was blood on the sheets and Avery does not like that. I covered it with a wash cloth so he couldn’t see it and promised I would change his sheets soon. I knew the sweats were coming and seriously why do double work? lol I got him a bunch of juice and one of his milk shakes, boost, and helped him through the fever. I am learning to not fawn and to give him some space.

The nurse stuck her head in and asked to see me outside. It seems that someone put the wrong label on the culture so pathology wouldn’t accept it. They wanted to stick him again. I said no. But then worried if I was making the right decision. He has had blood cultures every other day since last Monday and they have grown nothing. I really think the anakinra is going to work and that he does not have an infection. But what if he has gotten one now and I make the wrong decision? So I told the nurse to page his Dr and tell him I can’t make it but would do what he suggested. The resident decided that they wouldn’t call him but would wait and see what happened when the anakinra kicked in. It takes about four hours to get fever relief.

About 9:30 he sat up and griped “stupid sweats!” That means the fever is coming back down so I am happy. I tell him I know you hate the stupid sweats but I hate the scary shakes more. So I have given him a shave and a chair bath and he is comfortable and watching Iron Giant.

I am really trying to stay positive about the anakinra and the possible Still’s diagnosis. I am ready for us to be home and for him to be well. I do think we might need to give him more of the med which means a second shot. But people with diabetes have to take shots every day, you just deal with it.

I know we are blessed. There are kids that are really sick and might not get well. There are families all over having to deal with having a child in the hospital and all the havoc that causes everyone. It is hell watching you child sick and not being able to help them. I think that is the heart of a mother. If we could, we would reach in and take it from them. And honestly I tried. I have tried wishing, willing, begging and praying it away. For whatever reason we are still here and I know he will be ok and I know we will be home soon. Hopefully before Saturday for Zachery’s birthday. But even if not that day then one close to it. Because I know he will get well again. He was too close today for this to not work at all.

Maybe?!!!!!

He has gone over six hours with a normal temperature!  Things are looking up.  I am so relieved.

You don’t get the right to tell me not to worry

He’s my child, you don’t have children.  Yes you have been a Dr for a couple of months but I have way more to loose than you do.  I can’t just wait and see what happens.  The Dr said 4 hours and it’s not my fault it took you two hours to figure out how to order the drug and another hour and a half to get it here from pharmacy and yet another hour and a half to get someone to give it to him.  Then give it to him wrong.  And I want to know if he spikes a fever after the 4 hours if that means it didn’t work or if that means we have to try again.  Yes I know you don’t know anything about this drug and that is why I explained to you I was sorry everyone was sleeping but it wasn’t my fault it took four and a half hours to give it when I should have known the answer by then.  So really me taking twenty minutes to find my inner self and relax isn’t going to matter.  Cause see I promised my son that this was it that he was going to feel better and get to come home soon.  So when you can even fathom what I am going through then you will know that I can’t just sit and wait and not worry and you have no right to ask me to.

Now we are waiting

Avery got his shot of anakinra at 9pm.  I got a little anxious since it was taking so long.  The Dr left at 4:30 and said he would be getting it.  We agreed to be in a study so they drew labs.  They had to sick him anyway for another culture and I figured if it could help someone else find an answer sooner then that would be nice. 

I kept looking for the shot to come and after about an hour the resident came in and asked the nurse if she was supposed to order it and she was so she asked the nurse if she knew how to order it, then wanted to know what the dosage was.  At that point I’d googled it and was ready to tell her.  So they drew blood and we went down to sono for his kidney sonogram.  We made it back to the floor at 7:30 and it was here waiting on us.  Unfortunately his nurses son was in the ER and had been hurt so she had to run.  She gave report to a ne nurse before she left and by 9  when we still didn’t have it I was freaking a little.  I really don’t want him to have another fever spike tonight if we can help it. 

So the charge nurse come in and gave it.  Unfortunately, she gave it sub d instead of sub q.  So she said she call the pharmacist and he said it would take an extra hour to work.  I just hope it does work. 

I guess we go to sleep and see if we have a fever in the night and how he feels in the morning.  They said fever relief in like 4 hours and then in a couple days everything is resolving.

Back to the ER

Sunday Avery had a great day.  It was the first day he walked spontaneously and I really believed he was on  his way to being well.  What I later realized was I gave him his advil an hour and a half early.

By 4pm I could tell he was starting to feel bad.  By 6pm I could tell the fever was back and he was really feeling bad.  He was back to not being able to move without pain.  At about 9pm he started having horrible shakes and his fever went up to 102.2, which was the highest it had been. He’d been on antibiotics for two days so I called the after hour nurse. She paged his Dr and called me right back.  Said the Dr said he was concerned enough that he wanted him to go to Children’s and I needed to  bring a bag.  I told her we were about two hours away but as soon as someone got to my house to take care of Zachery we would be there.

Mike met us at the hospital.  He was standing by the road so he could help me get Avery out of the car and into the ER.  We walked into the hospital at 11:30.  He was triaged and sent to the emergency department as a level 3.  We waited until 6 am to see a Dr.  After giving all the info to the resident, she ran off to find a Dr.  At 7 am an attending walked up will all kinds of tests and ideas.  We were admitted to the hospital and made it to a room by 1:30 pm Monday afternoon. 

Since then he has had nasal swabs, throat swabs, blood cultures, skin swabs, 3 chest x-rays, 4 EKG’s, an echo cardiogram, 3 different kinds of antibiotics, 4 iv’s and dozens of blood tests.  And with the exception of having the rhinovirus everything has been negative for infection. Some of his labs have been abnormal but they are ruling out so many really scary things.

So now eight days into a hospital admission and fifteen days since onset of symptoms I sit hoping to hear my son has Still's disease (Systemic-Onset Juvenile Rheumatoid Arthritis). 

I say hoping because his fevers are hitting 104+ now, he is still barely walking. It is horrible watching him go through this.  Right now he is spiking fever and I’ve had to sit away from him because I think I was making him crazy by touching him and asking if he was ok.  I just promised him this would be the last one and then he will be better.  God let that be true!

We added another ology to our team today, Renal.  They are doing a sono on his kidneys and a 24 hour urine collection.  They wanted to take him for the sono a bit ago but he started spiking a fever so we put it off.   They are open 24 hours a day. lol  I think they are sending in a pain management team to see if we can get him off the mortin. 

The first visit to the Dr’s office

The next morning I called the Dr’s office at 8 am, I was trying to win the first phone call lottery.  I made an appointment to see the nurse practitioner and took him in.  He was having a really hard time walking by then.  I was having to help him stand and walk.  He said his ankles hurt and his feet and his arm.   The advil was helping so I took that with  us I didn’t want him to miss a dose because as it was it was only lasting a couple of hours.  I also took the paperwork from the ER visit and the Rx that Dr wrote us which I hadn’t filled yet.  The nurse thought he had fifth disease which is a virus and it can cause pain in adults.  She told us not to fill the Rx for steroids, there were more side effects than what could help him.

So we went home and I gave him advil for the pain and watched him.  When the advil was working he could use his hands, when it wasn’t he couldn’t.  That was Tuesday after Labor day and pretty much the last day he got off the couch. 

The pain was bad.  He couldn’t do anything and the advil was only lasting a couple  hours.  On Thursday I called the Dr’s office and asked how to control his pain during this time.  The joint pain with the fifth can last for up to 4 weeks so we aren’t thinking anything different at this point.  He had started having fever, so I mentioned that.  They wanted to see him if he had three days of fever but gave me some different doses for the advil to help with the pain.

It was hard watching him like this.  I kept saying to him Avery I hate this!  No more sicky!  On Saturday morning we started on our forth day with fever so we headed back to the Dr.  He send us for some blood test and said he’d call me that afternoon. 

Avery’s once normal blood tests were now elevated showing an infection so his Dr started him on antibiotics and said if he still had the fever on Monday he wanted him seen by Infectious Disease.  

It’s a party, when dad goes to work.

At least that’s what he thinks.  And well some days it is.  I like getting out in the evening and ok I admit it I like soda.  So two weeks ago, not too long after Mike went to work, the kids wanted ice cream and I wanted a coke.  So I said come on lets go to DQ!  We didn’t have school the next day so why not.

I think the kids might have been in their jammies but I said throw on some shoes and lets go.  It’s not like I’d go in. I hate going in, I love the drive though. 

Avery was the last out the door and i was telling him to hurry so bugs didn’t get in the house.  He was putting on his shoes and said owe, his foot hurt.  I’m sure I thought ok whatever, or knock it off just put your shoes on.  I know I thought it was odd and kept asking him where it hurt.  I think I even told him to just not wear shoes, it didn’t matter.  I do know I asked if he just wanted to not go, we could stay home, but it wasn’t bad enough to miss DQ.

I didn’t worry too much about his foot, he was walking ok.  I did keep asking about it and tried to pinpoint where the pain was.  Then a couple hours later I had him sitting on the couch next to me and was talking to him about antagonizing his brother.  I noticed a rash on his arms and asked if it itched.  I couldn’t feel any bumps but again thought it was odd. 

My first thought was oh no he’s allergic to his new Axe body spray. But it didn’t look like when he had hives. But I went ahead and gave him some Benadryl and sent him to bed.   I checked on him before I went to bed and he seemed fine.  The next morning he said his left arm hurt, he couldn’t bend it.  His foot still hurt and the rash was now on his legs too. 

I called the Dr’s office and left word for the nurse on call to call me back.  I told her about his symptoms and that what worried me was that one of his pimples or bumps he has was infected and was in his blood.  He was having a hard time walking on is foot so she told me to take him to the ER.

I freaking hate the ER, it’s full of sick people.  And being a bit of a germophobe it’s not somewhere I want to be and I needed to take Zachery with us because Mike was sleeping for work.  We didn’t have long to wait and the Dr didn’t think it was too much to worry about.  They ran some blood tests and everything was normal.  He thought it was a side effect to medicine or some rare skin thing.  He also started him on steroids and said if he wasn’t better in a couple of days to take him to his Dr and that he’d like him to see the rash.  So we went home, after stopping at Sonic.

School Time!

I have to be up in six and a half hours to take Avery’s picture for his first day of his junior year.  I am so excited!  I still have things to get ready.  I need to put their lunches together and make sure the school supplies are in his back pack and charge the batteries for the camera.  Then I wait an hour and get Zachery up and do it all over again. 

Avery rides the bus but I will be taking Zachery to KINDERGARTEN!  Kindergarten?  How did this happen?  I know he was just born and laying in my arms.  Now he is in school all day and Avery is a junior in high school!

I will not cry!  I will not cry!  I will not cry!  I will smile and cheer and stay excited.  Of course I am excited to have the house quiet for a few hours a day, but that will get old fast. lol  What I am really excited for is to watch my sweet boys grow and learn this year. 

It is my favorite thing in the world.  Watching my boys grow.  I love watching them grow into young men.  I can’t wait to see how much they learn this year.  These are the absolute best times of my life and I am so very blessed that I get to watch every minute of them.  Thank you God for letting me be a wife and mom. 

It makes me sad

To hear about all the things other kids Avery’s age are doing and get to do. I can’t help it, I’m human and I get sad. Yes I’m happy for your child!

But it hurts when I know my son will never be able to do those things. It’s not fair and I want to have a pity party for me but mostly for him. Yes I know he’s a great kid, and he has a good life, but some times I need to take a minute and just say I want those things for him.

I even want those things for me. I want to watch him do all the things he’s supposed to do. And yes I know it could be worse, so very much worse. But I don’t want to think about that right now.

I think I’m entitled to say some days it sucks. I love my son I just want it all for him.

The ARD

It was a good one! We are starting Avery’s transition planning. I had to fill out questionnaires about his plans after high school. Wow I can’t believe we are thinking about that. It seems like he just started school.

He’s had a great year and learned so much. He has progressed as much this year on his reading as he has for the past 8 years combined. His teacher is amazing and she uses things they like. They do daily current events off the internet. It’s one of Avery’s favorite things. He used to be really slow and not finish his work but when he missed getting to read and talk about his current event he got his work done. Of course I heard about LSD at dinner last night. lol Evidently current events have a lot of crime.

He’ll be in 11th grade next year so he will start his vocational training. One thing he has been looking forward to since we moved here two years ago is working at Walmart. The 11th and 12th graders get to work a couple hours a week at Walmart. He has been trying to get on that bus since 8th grade! lol

Avery has been talking about moving out. He wants to live in a group home. Mostly because he has a friend who lives in one. I am not too sure if he would want to if he didn’t live at the same house as his friend. I am so not ready to think about that yet. I can’t imagine a time when he doesn’t live at home. But I do want that for him, I want him to do all the things he wants to do.

Rafters

Framing is almost finished and only a couple of rafters to go!  We will move the a/c vents for the down stairs and run the ones for upstairs this weekend.  Then on to the electrical. 

Mike seeing how much room is left for the attic.

Standing in our closet looking into our bedroom.

Bedroom

Be a Cop

That’s what Avery tells me he wants to be when he grows up.  He wants to be a cop just like dad.  I wish he could, I wish he could be anything he wanted.

Zachery told him tonight he’d have to stay up for a whole day and he’d be really tired! lol  It’s funny what the boys think.  Avery just says he wants to be a cop like dad and work with him.  His other job choices are, he’d like to be in the Army or work at Best Buy or Brookshires. 

I never tell him he can’t be a cop or in the army.  I just can’t be the one who does that.  I just tell him I hope he can be whatever he wants.  Maybe I’m wrong.  I don’t know, but I just can’t be the one to destroy his dreams. I do encourage him to work at Brookshires or other places he could do well at. 

Tomorrow is his ARD and we will have to do transition planning and will work with the people who will do the job coaching.  I am going to ask that we start sooner for the job training.  He is ready and he wants a job so bad!  I am excited for this part of our lives.  I love watching my son grow up but I am a little sad that he can’t just be whatever he wants.  

Yogurt

Zachery wanted yogurt today at the grocery store.  I don’t usually buy it because of the sugar content.  He also wanted popsicles and I couldn’t find any that were sugar free.  So I told him he had to choose.  He explained that the popsicles were for after the yogurt was gone. So I bought both.

Tonight he wanted a treat and asked for a popsicle.  I reminded him about how they were for after the yogurt was gone but decided he could have whichever he wanted but only one thing and he couldn’t ask for more.  So he choose yogurt.  Evidently there was a plastic stick it the package so you could turn one into a popsicle.  And once he figured out he couldn’t use the stick on the one he had open he said he changed his mind he wanted a popsicle.

Ok I’m mean. lol  But no I’m sorry you picked yogurt and you opened it so you have to eat it.  I asked him what he was going to do with the yogurt and he said he thought I’d have it.  No I don’t like it. lol  So then he suggested Avery eat it.  I told him that Avery would have the same choice he had and that he would probably pick a popsicle.

So he decided to go ask him.  “Avery, would  you like a yogurt?”  “yes!”  “Or you could have a popsicle.”  Avery decided on the popsicle.  “Avery, it’s the neeeeew yogurt!”  “Oh cool I’ll have that!” Zachery got his popsicle. 

What a negotiator! 

Secret blog

I’m thinking of starting a secret blog.  One in which I say all the things I’m really thinking. 

More on the building

I thought I’d update a little on the upstairs. 

We have framed in the boys closet so their room is finished except the loft bed to be built. 

We have the walls up around the stairs and the bathroom framed.  Mike was a little nervous putting the floor down in the bathroom making all his plumbing final! lol 

All that’s left is the doorway into our bedroom, the walls around the a/c and the outside walls to our closet.  Then we are onto the rafters, running wires, insulation and sheetrock.  So like another day or two right?

Not so Perfect but Just Right

I just found out that a friend of mine was told it is likely her son has Autism.  Her little boy is the same age as Zachery and we met when we where pregnant with the boys.  My heart goes out to her. 

This discovery has triggered the memories of posting on that message board.  At the time, Avery was our only child.  And reading about everyone’s prenatal testing was so very hard for me.  It was like everyone was searching for the perfect child.  They would have blood test, sonograms and amnios.  I remember the posts where someone was terrified there was something wrong with their baby, it could have down syndrome or many other problems.  And I remember the posts where they got the test results back and so many would say how perfect their baby was.

I can’t explain how much this was like a knife to my heart.  Not because their child was perfect but because they thought any thing else wasn’t.  If having 46 chromosomes makes you perfect, what does having 47 make you? 

So their relief at having a perfect child was an acknowledgement that mine wasn’t.  Yes I know the world isn’t all about me and none of that was directed to me.  But, well the world is all about me and how things effect me.  And what I wanted to say was just because those tests are perfect doesn’t mean they all will be and that there won’t be problems.  It’s one of those things we moms know who have been doing this for a while.  All of our kids have highs and lows and we love them through or at least we are supposed to.

But as a mom of a child who would never be considered perfect, I know this; I know God is perfect in all things.  And I know he created my child, both of them.  So I know that no matter how many chromosomes they each have is not a determining factor on their level of perfection.   And I know how it will feel when you hear someone sing their relief that their child doesn’t have autism or when you learn their child too is more different than perfect. 

But hold on to this.  That no matter what, your child is perfect through the eyes of a mothers love and as created by God.  No one, not a test or teacher or Dr or stranger can take that away.  They can never change how perfect your child is in your eyes and that’s what matters. 

Things I want to ask

I’ve added a lot of “old” friends on facebook.  Such is the nature of social networks, right?  So we all talk about the right way to add someone.  Do you go right to their page and look at their pictures, read their info and see where life has brought them?  Or do you sit back and act cool and wait to see what they do?

How do you catch up 25 years?  I want to cut right to the chase.  Hey I see you are a Christian now does that mean you quit snorting coke?  Wow how many husbands have you had?  Oh, you’re dating?  Why didn’t you ever get married?  Where is Miss Manners for facebook?

Just because I friend  you does that mean I owe you an explanation of where and what my life has been?  It’s kind of hard to stay at arms distance from people when you have all of your daily personal information for the world to see.  But  you can’t just come out and ask someone if they had a chin lift.  Or can you?

Sponge Bob

How could one show be on so many hours a day? Any time day or night when I turn my tv on I can find Sponge bob to watch.  It’s always on.  You would think there was a channel dedicated to showing Sponge Bob episodes, but no you can find it on almost every kid channel of which we have about a dozen.  Everyone in my house likes it, except me.  I don’t get it. 

I can’t sleep

I hate it, I can’t fall asleep.  I wish I knew what was wrong with me but this is getting crazy.  I can’t fall asleep so I sleep later making it harder to fall asleep.  What a crazy viscous cycle.  And to make matters worse I feel asleep at 6 tonight and slept till 8. 

I went to bed at 10:30 and laid there until 12:30 when I finally got up.  I came out to the living room and a few minutes later Avery came out here saying he couldn’t sleep.  I sent him back to bed where he only stayed for a few minutes before starting to throw up.  Now this child does not move fast so I was like the drill instructor behind him yelling run, run, get to the bathroom, run!!!!!

I did not want to clean more puke off the floor.  Zachery started this mess a week ago.  Then Mike was sick and didn’t get out of bed for like 27 hours.  I did check a few time to make sure he was still alive. 

So now Avery is back asleep on the couch and I’m wide awake.  I’ve even quit having diet coke at night to see if that helped.  So far no.  I should be doing dishes.  ha ha ha ha

I did im Mike.  He picked up the jewelry I’d ordered from a show.  I can’t wait to see it.  I found so much cute stuff I’d love to have.  I asked about signing up to sell it but they want $395 to sign up and  you still have to buy all your jewelry for your shows after that.  It comes out to be like $1,200.  Uh sorry but no thank you.  I’ll stick to my Usborne books. 

Rain

It’s raining.  When it rains I loose my internet.  The kids are asleep, Mike is at work and I’m kinda lonely.  Or maybe I’m just bored.  I tried to watch TV but the power keeps going out and resetting the satellite so that is futile.  I’m hungry but have had all my points for the day so I don’t want to blow it.  I keep thinking I hear tornadoes, even if there are no warnings.

So I can do this, talk to myself.  I could go to bed but for some reason I really don’t like doing that lately.  I don’t feel like I’m at home.  How strange is that?

Maybe it will help when we finish the upstairs and I actually have a bedroom.  When I’m able to use some of my things instead of Marsha’s.  I miss my old house and I’m not sure how to make this one mine.

Moving Out

Zachery and I ran to Wal-mart after school for three things.  He decided he wanted popcorn chicken and I wasn’t buying it.  So he got mad and told me I was mean.  He tried to hold the basket so I couldn’t leave, so I picked up my bag and walked out.  He ran after me telling how mean I was and how much he hated me.  This went to all the way to the car where he got in my seat and said he wouldn’t let me in the car.  I picked him up and put him out of the car, got in and shut the door. 

He got in and demanded I apologize, ya I almost laughed at that point.  As we drove home, he told me he was moving out.  I asked him where he was going and he said to grandpa’s.  I asked how he would get there and he told me he’d get a map.  Alright, was he going to leave tonight or wait until morning to head out?  He said he wasn’t leaving until Easter.  I asked him why wait so long, why not just leave now.  He said no he was waiting until after Easter.  He didn’t want to miss his candy. 

I can’t believe I was able to keep a straight face.  The he told me he was staying gone until I called and apologized.  So dad, Zachery will be there in a few weeks.  He said he knew what color the house was and could get there with a map.

It’s Amazing

How clean my house was when my laptop didn’t work.  When I had to use the desktop, which is not comfortable to sit at, I’d only stay online a few minutes at a time.  So as I sit here and look around my house at the laundry not folded and the dishes not done and the messy coffee table I remember how nice it was to come in to a clean house every day. 

My plan for today, after I take a nap, is to put the laptop on the kitchen table and  not sit on the couch with it.  I’m going to finish the dishes, put away the clothes and tidy the living room.  It sounds good right?

Get a job

That’s what Zachery told me tonight.  He asked if I got a paycheck and I said no. So he told me to get a job.  Evidently he wants his friends mom to baby sit him and me not working is interfering with his plans. 

Finding Out

I remember that first night in the hospital after we knew something could be wrong.  No Dr’s came in to talk to me.  No one explained what would happen to my baby.  But that night I lay in my hospital bed and held my sweet boy.  I remember looking at him and thinking about what I knew about down syndrome.

I had never known anyone with down’s.  I didn’t watch Life Goes On and I don’t even remember seeing anyone with down’s.  I thought people with down syndrome lived in their own world.  I thought they were unaware of anything outside of themselves.  I thought all kids with down syndrome died by the time they were 12.  That’s what I remembered from high school A&P, that’s what the teacher said.  It was wrong but I didn’t know that and it stuck with me.  My baby was going to die. 

As I lay there, holding him and thinking all those thoughts. I wondered if his life would be horrible.  I wondered if I should love him enough to just end it now.  If I should put a pillow over his face, and save him.  That thought is my biggest shame.  It’s hard to get past.  I can say that it didn’t last long and I quickly decided that was a horrible idea.  But I still thought it.  It’s something that all these years later still breaks my heart and I feel guilty and shameful for thinking it.  But even through all of that I knew one thing.  I loved him.  And when I looked at my Avery I could not reconcile all the things I thought I knew about down syndrome to the baby I held.

He looked at me.  He knew me.  He was comforted by my voice and my touch.  He nursed from me.  He made my heart beat.  I was terrified but I looked and him and saw how perfect he was.

The next day we came home from the hospital.  Still no one had told us anything.  We had an appointment the next day with the pediatrician, he had jaundice so we had to go by the hospital first for blood work.  Not much was said at the appointment, just that he seemed fine.

The fist week passed and we decided to take him to another Dr.  We made the appointment and only said we were looking for a Dr. and our baby was a week old.  He came in and looked at him. He looked at the back of his neck and the palms of his hands.  Then he said he had to get another Dr.  I knew, I knew he thought it too.  So when he came back I let him off the hook. I told him they thought our baby might have down syndrome.  He was relieved, he said yes our baby was probably a mongoloid. 

Yep, he said that word!  We were still numb.  He did tell us that Avery would be ok.  That he would do all the things other kids did.  This was really the first thing we’d heard.  So we left and cried all the way home.

We had been told it would take two weeks to get the chromosome test  back.  On Tuesday of the second week of the wait I got a phone call.  We were nine days into the fourteen day wait.  I answered the phone in my bedroom.  The voice on the other end said there was a problem with the blood.  That the blood got to California and all the labels fell off.  That they couldn’t use it.  I didn’t understand what I was hearing.  WHAT?  I kept saying, “you can’t make it fourteen days again.  We only had five left.  I couldn’t do fourteen, I could only make it another five.”  She had no clue what I was talking about, did I want to come in and have the test or not?

We were hanging on by a thread.  We weren’t eating or sleeping.  The cradle was on Mike’s side of the bed and all night long he would sit up and shine a flashlight into Avery’s face.  “Is he breathing?” I was ask.  Mike would check, say yes.  The light would turn off and we would sleep for a few more hours.  Every night I went to bed I thought my baby would die.  I kept saying to the Dr., “weren’t all kids with down’s sick?”  So she offered an apnea monitor and made an appointment with a cardiologist. What I wanted was for her to tell me he was ok, that he wasn’t going to die.

We were still seeing the first Dr. every day.  On Wednesday after the second blood draw she asked if we had the results yet.  She didn’t know about the labels.  She called the lab and found out we could have the chromosome count in 24 hours!  We could have known in 24 hours if our baby had down syndrome.  So she told me to call the next day and as soon as the results were in we could come to the office and get them.

We had spent that first two weeks going from crying to telling each other it wasn’t true.  Mike and his dad had gone to the library and came home will all kinds of books about down syndrome.  We sat on the floor and compared all the pictures to Avery and to ourselves.  What we determined was that Mike had downs. 

I would ask him mom to come and sit with Avery so I could take a shower.  I would stand in the shower and cry my heart out.  I didn’t want to cry in front of him.  I didn’t want him to think or feel that we thought there was something wrong with him.  I didn’t want him to feel that I was sad about him.  I didn’t want this horror to touch him.  I bargained with God.  I promised how I would help people with down syndrome and be an advocate for them if only my child didn’t have it.  I started to tell people what the Dr’s thought.  I would explain about the low set ears and the line on the palm of his hand that he didn’t have.

So Thursday came and I called to ask if they had the results.  No, not yet.  About 4 pm the Dr called and told me, there was a problem with the blood.  There were getting a specialist in to look and it would be the next day before we knew.

So on Friday morning, on Avery’s two week birthday, I got a call from the office.  Of course I didn’t answer it in time, and had to do *69 to call back.  We went in to the office.  On the drive there we went back and forth with he has it, he doesn’t have it.  But come on, if the test is ok they do just tell you over the phone. 

So we went into the office and waited for the Dr.  She came in and said, “I’m sorry the test was positive.” Of course I started to cry, holding my sweet boy.  My heart breaking into a thousand pieces.  All the hope I’d held out was gone.  Mike looked over at me.  I don’t think he was crying, oh he’d cried plenty over the past two weeks.  He looked at me and said, “is this the baby you have loved from the minute he was born?”  Of course he was, I’d loved him from the moment he was created.  “Then stop crying,” he said.  Avery hadn’t changed just because of a blood test, he was still the same.  He still knew my voice, looked at me, was comforted by me, made my heart beat.

So we walked out of the office that day different people.  Mike told me he didn’t want anyone to tell us they were sorry. He wasn’t sorry our son was born. 

I won’t pretend that it was easy after that.  That all of a sudden we were these happy people who were so blessed and happy their child had a disability.  But what we decided and what we have lived is our son is just as he is supposed to be.  We treat him like our son, like a person, the person he would be no matter how many chromosomes he has.  And today all these years later he still makes my heart beat.

Did you Know?

That is probably the most common question I get about Avery.  It is the one thing other parents say to each other.  Did you know, did you know the baby you were having was going to have down syndrome? 

No we didn’t know.  We had no idea it was even possible.  Silly I know.  But Avery was our first, I was only 24 and I skipped that part of the book.  Why would that happen?  I was young and there was nothing like that in our family.  It didn’t seem possible.

So you are asking yourself how did you find out?  Did I know deep inside myself that something was wrong?  Did I know as soon as I saw him?  No to both of those.  I had a great pregnancy with Avery.  I puked all the time but I could feel life inside of me.  I talked to him and felt him move.  I loved every minute of it.

I had PROM at 36 weeks.  My water broke early.  That is what I did know.  That my water would break.  And I knew he was a boy.  So at about 3 am on Thursday September 9, 1993 I got up to pee and my water leaked.  So I did what all expecting mom’s would do.  I went back to bed. 

Then at 7 am I was back up to pee and more water.  So I went back to bed.  Finally at 9 am I called the Dr and went in to see her.  Yep she said my membranes were ruptured.  Go to the hospital and don’t come home until you have a baby.  She took amniotic fluid to test and see if his lungs were developed. 

So we went to the hospital and spent just over a day there before they decided that his lungs were developed and I should be induced.  Not much was happening with my body and my risk for infection was increasing.  I’d already been almost 36 hours since my water broke. 

So I labored and at 9:45 pm Friday September 10, 1993, 42 hours after my water broke, my Dr came in and told me I was ready to push.  Gosh it’s been 16 1/2 years and I still remember every second of it.  At 9:56 pm my beautiful, perfect son was born.  He was screaming and I said, “hey little guy, don’t cry, mommy’s here.”  And he looked at me and stopped crying.  He knew me. He had 10 fingers and 10 toes and was perfect!  His apgars were 9 and 10, he was 4 weeks early and weighed 7 lbs 10 1/2 ozs and was 20 1/2 inches long.  He had blond hair and skinny legs.  He nursed right away and made my heart beat.

At 3 am I got up and went to the nursery to check on him.  I’d sent Mike home for the night, he’d slept in the labor room the night before.  He was awake and waiting for me.  I took him back to my room and tried to nurse him and loved him.

The next morning I went to take a shower and the Pediatrician knocked on the door.  She had a resident with her and never came in.  She said she would let me shower and talk to me later.  I was worried, was he ok?  He was early were his lungs really ok?  Yes she said, he was fine.  And as she left she turned back to me and asked, “Who does he look like?”  That question and my answer have haunted me since.  “He has to look like his dad, no one in my family has a face shaped like that,” was my answer. 

After my shower, the nurse came in with Avery. I was so happy, the timing was perfect!  I was just going to call for him.  I asked her to stay and hand him to me after I got into bed.  As I got into bed, she asked if the Dr told me about the test they were running on my baby, the chromosome test.  ?NO? I didn’t now about any test.  I did know that the nurse last night said that because was early they might have to do extra things to him but that the Dr said he was ok.  “What is that test for?”

She handed me Avery and left.  I was alone and I knew that didn’t sound right.  My OB’s resident came in to check on us.  We’d become friends over my pregnancy.  I asked her if she knew what this chromosome test checked for.  This was the first she’d heard about this.  She told me to have the Pediatrician paged and ask her what was going on. I didn’t want to bother anyone so I just laid there and held him.  Yes I know if you know me how odd that is! lol

So a nurse came in and said that the Dr told her I wanted the Pediatrician paged and she has paged her and they were waiting or her to call back.  Kathy, my OB resident came back to see if I’d heard from the Dr.  By then my mother in law, grandmother in law and sister in law had arrived.  No I hadn’t heard from her yet.  She said, “have her paged again.”  I told Marsha that some nurse had said they were running a test and I was trying to find out what it was.

The nurse came back and told me the Dr was paged again and was on her way to her office but would call me when she got there.  Not much time passed and my phone rang. It was my OB on her cell telling me the Pediatrician was just being cautious but everything was fine and she would explain it all to me.  I was so relieved, my baby was fine.  Ok, on with my visits.

I still remember my sister in law was holding Avery.  Mike wasn’t at the hospital yet, I later found out  he was driving all over looking for the perfect rocking chair as a gift for me.  And in walked Reef, the resident.  He walked into my room, went to the corner, turned around and said to me, “I hear you found out we think you have a down’s baby.” 

Honestly I don’t remember speaking.  I remember thinking if I don’t talk, he will shut up and leave.  Marsha, my mother in law went nuts yelling at him.  Asking how he could possible say something like that.  How could he possible think that!  I remember laying in the bed and watching her pacing back and forth and ranting. I remember hearing things like ears set low, and a line on the hands that he didn’t have.  I remember looking at Avery being held in someone else’s arms and just wanting him back.  I wanted to protect him from all the crazy people.  I wanted everyone to shut up and go away and leave me with my perfect baby.

I was numb.  I remember Reef saying they didn’t have to do the test.  And that was all I remember saying, “yes you do, you can’t just say that and then take it away.  You have to do the test.” 

Then it was just Avery, Marsha and I alone in the room.  And I was numb, shocked.  People started dropping in saying wow  you had a baby, isn’t he cute, and all those things.  Mike got there and was so happy and holding Avery.  The cafeteria sent up a steak dinner for us.  People were coming and going.  I was numb and all I could think was I had to tell Mike.

His mom and dad went  outside to smoke.  And I know his mom was telling his dad.  And finally we were alone and I had to tell him.  I think I told him that they were running a test and a nurse thought he had down syndrome.  That’s what Reef said, that he or the Dr didn’t see it but a nurse pointed it out.  His joy was gone.  I still have a picture of him holding Avery before he knew and the joy on his face.  And I have the picture in my head of all the joy gone.

to be continued……..

The Library Book

Zachery’s library book is due back on Monday’s.  He’s supposed to bring it on Friday so they are all there and waiting.  He also has a book in a bag he has to return every Thursday.

Thursday afternoon when I took him to school I realized I’d forgotten the book.  Well Friday he was throwing up so he didn’t go to school.  Those freaking books were on my mind all night I was afraid I was going to forget them.So when we went to leave for school I went to grab the books.  But they were gone!  I looked all over and couldn’t find them.

So finally we just went to school.  Of course now he was late and I had to explain to his teacher that I had no idea where his books were.  A couple weeks ago I had to call her, after she sent  a note home because it wasn’t returned, saying we didn’t receive a book this week.  As I’m on the phone with her, Mike starts yelling that the book is in my car! lol 

When the kids go to the library the Liberian get’s all pissy asking each child that forgot their book, where their book was.  Then she sends a bill home for the price of the book.  You know someone takes her job a little too seriously. lol  These kids are 4 and 5! 

So mom got a yellow today at prek, for loosing not one but two books! lol  I did remember that Avery had cleaned the kitchen table where the books were, so we wouldn’t forget them.  And after he got home from school figured out where he put them.  There is so much pressure in prek.

Love it or Hate it

It doesn’t matter what you feel about the new healthcare bill.  The thing that excites me is that so many people feel something for it. 

For so many years we have been complacent with what happens to our lives.  We have cared more about black mold as a nation than our government.  So to see so many people speaking, protesting, organizing and even cheering is exciting to me. 

I only wonder how long it will take for the average person to put their heads back in the sand and just let life happen to them.

Go to bed!

How many times do I have to say it?  Of course Zachery is still awake, because I’m on the phone with my dad.  So he is on Avery’s mp3 player and singing, “We are the Lazy Generation.”  lol

Go to bed Zachery, mommy has tv to watch and snacks I’ve hidden from you.  I love you and will see you in the morning.

Renovation Reality

We have started building the bedrooms and bathroom on the second floor.  So far it has taken longer than we would have hoped but we are figuring it out as we good.  We laugh that some people actually have a plan before they start but we had an idea and are making the plan as we go.

First Mike had to take out a wall in the downstairs bathroom to find the three inch line to connect the new toilet to.  This was January 28, 2010.  Then he ran all the plumping upstairs.  It took a couple of weekends to get it done.

 

This is what will be the boys bedroom.  All the wood had to be attached to the metal by drilling into it and then putting a bolt in it.  Oh it was a lot of fun! We started on February 13, 2010. 

This is the hall that leads to our bedroom.  This took the first 3 weekends to get done.

This will be our bedroom with the two windows.  I am standing in the boys room and the bathroom will be in between.

The new bathroom.  Behind the vanity is the staircase. 

We now have all the framing attached to the metal.

This is the outside wall of what will be out closet.  I am standing in the garage.  This was March 13, 2010.

This is the outside wall of the boys room.

This is the boys room as of March 19, 2010.  I am standing at the top of the stairs looking in.  Their closet will be right in front of me on the left.  Where Zachery and Mike are standing will be Avery’s new loft bed.  He wants a room like Drake and Josh.

It’s funny there is so much stuff upstairs we look like hoarders.  But as you can see I have cleared out lots of it.  So much of our stuff is still boxed up from the move.  We will finally be able to use it when we move the bedrooms upstairs and I have space again! 

My Friend Pick Me Up

These are words I hear on at least a weekly basis, and usually a few times a week, from Avery. This is not something new, he has said it for a couple of years. He has showered and dressed, even ironed his clothes. He has packed suitcases, put on his shoes and waited. But no one has ever come to pick him up, even to just visit him. Let me just say that as his mom this is a knife to my heart.

So yesterday when he told me that Boomer was going to pick him up today I just said ok, great. He had youth group tonight and when he got home from school again he said, Boomer pick me up. So I again told him ok. And if he wasn't here when it was time to leave I would take him. Tonight the most amazing thing happened. We'd sent Avery into change his jeans and then I heard him on the phone. About that time the dogs started barking and I walked outside almost too excited to believe someone had come to pick Avery up!

It was Boomer, he came to take Avery to youth group. I don't know who was more excited, Avery or me. Avery got home from youth and asked me to write Boomer a thank you note for picking him up. How sweet is that? How do I thank the young man who came and did the one thing my child has waited years for?

For other kids it's no big deal. They make friends they go places with them. For my son, he has people he knows and people who care about him. But I have dreamed about the day someone would come and take him somewhere and be his friend. And today I have the hope that it will happen one day. Because Boomer came and picked him up for youth group.

It's Back to School Time

For my boys. Zachery goes back tomorrow and Avery on Tuesday. I have read from my facebook friends that some are excited and some are sad. I am not sure what I am, except relieved. We made it through a holiday season and it was nice and no one died.

I am excited about this new year. I am excited about taking charge of our money and living on a budget. I'm excited about saving money and adding an upstairs to our house. I am excited about all the things that are going to happen this year. All the fun we will have and all the memories we will make.

I am thrilled to be a wife and a mother and all the ways I will get to show my boys how much I love them. It feels like our life has been on hold for the past two years but now we get to move on again. Can you tell I am excited about this new year! lol

So yes I am looking forward to the boys going back to school. I can't wait to see how excited Zachery is to go to school tomorrow. And how thrilled he is when he sees me waiting for him after school. It will be nice to have a few hours alone with Avery tomorrow. I love that Avery loves school and I know he is excited to go back Tuesday. I can't wait to see what he's going to learn this year.

We are clearing out an area around a very old oak tree. We are going to put a swing for the boys in it when we are finished. So we spent the weekend clearing trees. I get to drive the tractor. And wow is it fun. lol I'm pretty good at and and pretty good at using the bucket. I drive up to a tree and lower the bucket and Mike wraps a chain around a tree then I use the bucket to pull the tree out. The big ones Mike has to cut down with a chainsaw. But then I get to drive the parts to the burn pile and unload them with the bucket. So that is what we will be doing these first few weeks of the new year. When it's not too freaking cold to work outside! lol