Now Scoliosis?

I just talked to Mary's pediatrician. She has scoliosis. Her curvature is a 10 for now.

So now we go to CHOA at Egleston to the Scoliosis Children's Clinic. You can imagine the panic that is screaming inside of me right now, right? I mean seriously?? Now this?

Ugh!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Yeah, the tears are streaming.

What is going on here? Juvenile Arthritis, ADHD, Anxiety, Night Terrors, ASD, ODD, etc... Why my kids?

Yeah, that's where this Mommy is right now...in the Why's?

What now? Where does this path lead us? Surgeries for Mary now? More doctor's appointments that we can't afford? More to keep up with? My brain is so tired now. How will it keep up with yet another thing?

Why am I not already an alcoholic?! Ok, not really, but come on. Wine, anyone?

I am a bit overwhelmed here.

Mary's Spinal X-Rays

Today I took Marian to have x-rays done of her spine. Her pediatrician, Dr. Barnwell, suspected scoliosis a while back and sent us for x-rays, but they came back inconclusive. Well, her back started hurting more and more frequently, so he sent us back for more x-rays. Sure enough, her curve has grown and now I am almost positive that he's going to say she has scoliosis.

Here is the x-ray of her standing straight up...

There is no denying a curvature in her spine now. It's definitely there. I don't even know what this means really as far as what we do about it, treatments, braces, etc. I am saving my freak out until I talk to Dr. Barnwell. 

Pharmaceutical Companies Are Stupid!

So we went to see Dr. Vega on the 4th of this month. I can't even remember if I posted about that appointment or not, but I probably have. Anyway, she put Mary on Enbrel shots, two shots once a week.

I went to check on her prescription and they told me that our insurance was denying it. So I asked how much it cost out of pocket...never ask how much it cost out of pocket...lesson learned.

$5,000 per shot, per week. $10,000 a week.

o.O

I came home immediately and called her doctor. They just called me back and told me that they are pushing the paperwork through now and are hoping to hear back from our insurance by Wednesday.

$10,000 a week.

O.o

These people are stupid.

MRI

We got a call on our way to one of many of our doctors, and it was someone from Mary's team. They said that her x-ray showed an abnormality and they wanted to schedule an MRI of her right ankle. I went back and looked through her tests results to see what was going on because the caller was so vague and I found that she has some loss of the density of her ankle bone and the tissue that sits just under it, the "cushiony" part that helps her ankle bear her weight when she stands on it.

She's home from school today because she isn't feeling well. Hopefully we will get a call for an MRI soon.

**Update**
I just got the call to set up the appointment. She will be having her MRI on 11-08-16 at Egleston Children's Hospital. So now we wait.

Where Is God In All of This?

I was told today that a child being allowed to suffer is the reason that someone doesn't attend church. I immediately felt defensive and saddened and unsteady all at the same time. I love this person more than anyone else (other than my children), and cannot imagine an eternal ever after without them. It makes me ill, it makes me angry, it makes me scared to hear that they allow their tiny bit of faith to be shaky for any reason.

I have thought and thought on this since having this conversation and this is what I have to say about this.

Where is God? 

He is right beside my baby girl. He is holding her hand. He is carrying her weak body when she can't.

How is He doing this?

We didn't have the money for a wheelchair. We have not made many of the right decisions in life and we have faced many financial consequences because of those choices. But God still provided not one, but two wheelchairs for us. Why? Because we have not one need, but two. We have two daughters that at different times, for different reasons, cannot carry their own bodies. So God provided a chair for each girl by way of loved ones and a doctor who cared enough to get our insurance to cover it for us.

Where is God when she is in pain and suffering so badly? An eleven year child should not have to go through this kind of thing.

Steady My Heart

He is there. He is keeping her faith in Him strong because even in all of this pain, she feels Him there. She knows that even though she's hurting and it sucks, it is part of His ultimate plan for her life. Even if we cannot see what that plan is right now, it will be revealed in His time, when everything He has set in motion comes together.

Maybe she will counsel other kids like herself. Maybe she has something in her future that she needs to be mentally strong for. I don't know why my baby has to live in pain, but I do know that I trust God and I love Him and what He has done for us every step of the way, even though we really, really don't deserve any of his Grace...He still gives it, time and time again, even though we fail Him daily.

I am not the best Christian in the world. I am not even a good Christian, y'all. I fail daily. I give in to my flesh and shame Him constantly. But I always have my Faith in Him. I once questioned whether there even was a Him, I will NEVER do that again. I KNOW He is there, always. I know that if my child has to go through this, He has a reason for it. ANd while I may question Him too sometimes, and I may have a bad day and argue with Him, I trust in His reasons. It just may take me some deep breaths and reevaluation to remember that sometimes.

Revelation Song

It is not for us to question. It is not for us to understand. He has her in his hands and He will not do her wrong. She is His child, she loves Him and He loves her. He is making the hard decisions to be better able to care for her in her future. He is watching out for her in ways that we cannot. He knows her future, I do not.

It is not easy for me to entrust my babies to someone else, y'all. But to Him, I lay them at His feet and beg Him to take care of them.

Healer

Thank you God for all that you have done for us. Thank you God for carrying my baby when I cannot. Thank you for your forgiveness and your mercy. I put this person in your hands, Lord, please open his heart and allow him to feel your presence in his life. Show Him what only you can. Please wrap him in your arms and give him no other choice but to feel your love for him.
In Jesus Name, Amen!

God is in her smiling face, He's in her laugh. He is why she is here. He gave her to us. Marian is a gift from Him. This is where He is.

I Am Not Alone

Mary's New Diagnosis

We just got back from Egleston. Mary saw Dr. Vega-Fernandez this morning. From the door to the back, we saw 5 different people, answering lots of questions, many of the same repeated. By the time Dr. Vega got to us, I was ready for a nap and so was Mary. LOL Lots of thinking and talking going on...makes my brain tired, especially right now. There is so much going on and we aren't getting nearly enough sleep at night. I'm exhausted.

I really do like Dr. Vega though. She does a full physical every visit, and today was no different. She knew where Mary was in pain just by looking at her and then she could tell where she hurts in places that weren't hurting today, just by feeling her joints.

I didn't even know that Mary's left knee, leg and ankle were swollen as badly as they are, until I saw her in those exam shorts sitting on the exam table. Her left knee is really big from the swelling. Her big toe too. She is hurting so badly in her big (left) toe, the heel of her foot and her achilles tendon, that she's having trouble walking. I have my suspicions that she will be back in the wheelchair by the end of this week. I think that her going back to public school is causing some irritation as well. A lot of walking going on everyday now.

So Mary's new diagnosis is JIA/Psoriatic Arthritis. Her left wrist and hand are starting to show signs of possibly becoming like her right wrist and hand, as well as her left foot and big toe. Her right wrist and hand have muscle atrophy. So they are referring her out for Occupational Therapy and have switched her medications to now include Enbrel. She will be getting two shots a week for at least the next 3 months. She wasn't happy but she got to choose between Enbrel and Humira, the difference being two shots every week (Enbrel) and a shot every other week (Humira), but Humira stings worse than Enbrel. She picked the more frequent but less painful meds.

She was very upset that she had to have a Flu shot today. Not a happy camper. I think she wanted to throw down with Dr. Vega on that one. LOL But she did it and now it's done. She's good until next year, I hope.

I am terrified of this medication. I won't try to lie and be brave at all. I am worried sick. It lowers her immune system leaving her susceptible to infections, viruses and possible cancer and death. But it's the only thing to slow down this process and possibly keep her from becoming completely immobile before she's even had a chance to experience life.

I am a little emotional over this right now, y'all. I thought it was bad that she lost the use of one hand, but to possibly lose both hands and her left foot? This is just too much. It's crazy, right? She's 11. Eleven years old!! She still has to get her driver's license, dance at her Prom, walk her Graduations, walk down the aisle at her wedding, run marathons, climb mountains, cook! (She wants to be a chef for goodness sakes!)...her entire life is still waiting for her. She has to be able to move through it.

I am ready to crawl out of my skin and hide my head under a rock. Cancer? Really?? This medication can lead to Cancer? Am I even doing the right thing by allowing them to put her on it? Cancer is not a joke. It's not something to just try to dodge the best you can. Right?

I don't know. I don't know if I am making the right choices for her. I hope I am. I hope I can go against my own better judgement and let go and trust this doctor. But what if that's the wrong thing to do? What then? I lose Mary? Well, that's just not acceptable.

Please pray for her. For us. Please please just keep her in your thoughts and remember her name when you talk to God. We need everyone lifting her up right now.

Overcomer