Wow a new year!

And I don’t have one blog post for this year. 

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.