Sick of Sick

I usually try to keep this blog a happy place cause when we look back on it years from now that is what I want to see and read-happy things. The truth is right now is not a happy time for us though. Marcus is truly sick and no one can figure out why.
He spends his days in agony. He can no longer get up off of the couch by himself. He can not be on his feet long enough to take a shower. He hasn't been able to dress himself for quite some time now. We are teaching him through home schooling cause the pain is to great for him to make it through even a day of regular school.
For pain we have tried Tylenol with codiene, Vicodin, Tramadol, and Oxycodone as well as IV Morphine. The only thing that has helped was the IV but he can't stay hooked up to it indefinitely in a hospital. They can't do an IV with it at home cause of the risks it carries, believe me I have asked.
Yesterday Joey and I finally caved and gave in for him to be put on Oxycotin. This has been a huge struggle for me cause I know how strong of a drug it is. I had a family member die from an overdose of it so I know firsthand that it is nothing to play around with. But what do you do when your child is in constant pain? Sit back and watch?
Sit back and watch....really that is all you can do.
We have taken him to the two best children's hospital within 200 miles. He has seen his pediatrician so many times that when I call now the nurse automatically puts the doctor on the line. We have tried different anti-inflammatories which ended up making his stomach bleed. I listed all the pain meds we have tried and of course those were along with regular Tylenol and maxed out Ibuprofen. So where are we to turn? What do we do?
Let me tell you, there is nothing worse than sitting watching your sick child cry out in pain and there isn't a dang thing you can do to make it better let alone make it stop. I have never felt so helpless before in my life. I have to leave the room on a daily basis so I can go cry in private. I then pull myself back together and walk back to be with him like nothing is wrong.
If this is Lupus it is one crapy disease! It has stripped an active, full of life, a star of his baseball team, popular 10 year old boy of his life as he knew it. He can't even walk down the stairs to play a game of pool anymore. All he can do is lay on the couch. What kind of existence is that for a child who loves life and loves to be active?
We have one last hope. On Feb 3rd we are taking him here http://www.cincinnatichildrens.org/
Cincinnati is the last place we know to go at this point. They are suppose to have a world renowned rheum clinic along with a childhood Lupus clinic.
Please anyone who reads this blog pray that they can give us a diagnosis and some hope.

At Don & Sherry's

World Series coat

New Cardinal's Gear

Cardinal shoes (love the look on his face)

Stockings

Christmas morning

Dressed and ready to go to great-grandma's house

Merry Christmas Eve

Poor Daisy

Daisy had to have surgery on one of her eyes cause the bottom eyelid was turning in on the eye itself. She came home from the vet wearing this collar to prevent her from scratching at it. I have to admit when I seen her I laughed harder than I had in a very long time. I have never seen anything so funny yet so pitiful at the same time!

Best part of all-the BOX

opening gifts cont'

Opening Gifts

Early Christmas

Joey's mom, Bev, is leaving in the morning to fly to CA to spend Christmas with her daughter and her family. So we took this evening to have our Christmas with her before Joey takes her to the airport tomorrow.

Christmas Party Stash

Bre had her Christmas/jammie party at school today. Here she is still in her pjs while going through her stash of candy.

Sadie and Sasha

This cuddle session is huge considering that Sadie is the cat who likes no one. We have even caught her grooming Sasha. Of course as soon as she sees us watching her she stops and gets up and walks away. All that aside I do believe they are friends and Sadie needed the company.

Roadkill?

Sadie Bell cracks me up when she lays like this, she looks like roadkill-LOL!

O' Christmas Tree

More tests

We are back finally from going to the doctor in St. Louis. We hit some bad weather coming home last night and had to stop even though we were over half way there. It just wasn't worth getting in an accident.
I wish I had something solid to report but I don't. The doctor checked him out from head to toe and is running a bunch more blood work, 13 vials to be exact. Just pray with us that something shows up this time so we can treat him.

Marcus's doctor appointment is tomorrow at St. Louis. Since the weather is suppose to be getting bad we are heading up there this evening and staying the night.
He does seem a little better, not enough to brag about but still anything is better than nothing at this point.

Thank You....

Lord, Dylan's MRI came back normal!

He has an appointment after the first of the year to get his hearing tested and we will go from there.

Stolen Chair

Got to be kidding me!!

I took Dylan to the ENT doctor today cause he has been having problems hearing out of his right ear along with some ringing. After an exam the doctor announced that he couldn't find anything wrong with his ear but he needed a MRI cause he might have a..... brain tumor.
You have got to be freakin kidding me!
Where is the camera at recording this very bad reality show that we seem to be stuck on??

He goes tomorrow morning for the test then back to the doctor on Thursday.



BTW, Joey did make it home today. He was three days late but at least he is here now.

Hitchin a ride

Trust??

"I know God will not give me anything I can't handle.I just wish he didn't trust me so much."
~ Mother Teresa


I know I am a far cry from Mother Teresa but I am so getting the meaning of this statement!
Joey was suppose to have been in Friday but thanks to some thunderstorms and now a backed up helicopter schedule, he will not be in till Monday morning.
I am frazzled, I am stressed, I am tired...................

During physical therapy this morning Marcus started having problems breathing so off to the doctor we went again. He has what is called costochondritis http://www.emedicinehealth.com/costochondritis/article_em.htm

It isn't serious and more or less is inflammation in the rib cage.
He was also bothered by this while at CG at St. Louis. He was and is very, very tender and sore when his upper chest is pressed. The main treatment for it is anti-inflammatories, which he is already on. The doctor said it would probably improve in a week or two by itself.

About the physical therapy, today was his first day. Since insurance won't pay for a massage therapist but will pay for massage therapy through PT he will be going 3 times a week. They are going to do massages along with water therapy. It will not cure or fix anything, all we are going for is pain relief.

We also rented a wheelchair today. He will not use it full time but as it is now he is stuck in the house cause he can't walk without pain. That makes it near impossible to go even to Wal-Mart or grocery shopping.

So between taking him to PT, to the doctor for some strange sounding disorder, and renting a wheelchair for a 10 year old child, it has been a pretty depressing day.


spell check not working so please ignore my lack of spelling skills

It's been another bad day for Marcus but his appointment has at least been moved up from the 29th to the 15th.

Take My Picture

I was downloading some pictures from the camera and Bre told me what she always does when she sees me with a camera "take my picture mommy". So I did and here is the result.

Massage

I took Marcus for a massage this morning and it did help. The problem is insurance doesn't cover it so it isn't something we can afford to do every single day.
I spoke to his doctor at CG and she increased the dosage of his anti-inflammatory. She also told me to start him on physical therapy. The hope is it will do as much good as the massage and insurance will pay for it. She is also trying to find an earlier appointment for him instead of him waiting till the 29Th of this month.

Won the battle, not the war

It is almost 3 AM so why the heck am I on the computer?? Well my lovely daughter decided to wake me up twice since 1 AM. No she isn't sick and there are no monsters in her room, I checked :). I guess she just thinks it is a good night to stay awake. Right now she is on the couch watching TV cause when I attempted, many times I might add, she had a screaming fit. I know I am the mother and should have won this battle but she was waking everyone in the house. Marcus has had such a rough day that he needs to sleep. So she won the battle-this time.
About Marcus, he had another really bad day. At one point he was in so much pain he was rolling around whining. You have to know him to understand that he just doesn't act like that unless it is unbearable. I think I will take him for a massage tomorrow and see if that provides any relief.

So Very Hard

Marcus is bad today, really bad. He is so stiff he can hardly walk and he has fell down twice that I have seen. I say it that way cause he hides a lot from me. He doesn't want to appear 'weak' as he put it. He also doesn't want to take his medicine so every dose has been a struggle so far, well until today. Today he is actually asking for it.
This is the hardest thing, as a mother, that I have ever been through. I thought him being sick so much when he was younger was rough but this tops it. At least back then you could see the light at the end of the tunnel. You knew that sooner or later that he would be getting better.
Now every day he is just worse it seems with the exception of a good day or two now and then. It is so hard watching an energetic, athletic 10 year old walk like an old man from the stiffness and pain and not being able to do a damn thing about it!

What's Up With Marcus

Marcus was in Cardinal Glennon Children's Hospital in St. Louis for a few days for pain control and further testing.
His lower back, both hips and the back of his knees starting hurting him terribly. We seen his pediatrician who done some more blood work on Thursday but when the pain would not let up despite major pain meds I along with his doctor and a rheumatologist at CG decided he needed to be seen in their ER.
He was admitted during the visit and we stayed there Saturday morning till Tuesday evening. During that time he received a Morphine IV for the pain and had a lot of blood work done.
Here is what we know......
It looks like he may have Lupus.
His ANA test has came back positive three times now. On Thursday the titers tested 1:300 (something). By Saturday it had quadrupled to 1:1200. Even though all other antibody tests have come back negative the doctors say this is a direct indication of Lupus given his symptoms and the family history of it on Joey's side.
Nothing is positive at this point though and all we can do is treat his pain and keep retesting him till something else shows up. As for now he is on pain and arthritis medicine.

Hospital Attire

Modeling his wonderful gown.