PTSD- its not just our veterans

I don't speak often of my leftover mental scarring from Andy's birth. I do suffer from PTSD and it rears an ugly head.

A lot of women that I know have been having more babies lately. I'm so happy for them! In the past, I had deep feelings of jealousy and anxiety over someone I knew giving birth. Now I feel an overwhelming joy for them. It is so much more than that.

It's reading of another birth, seeing another happy friend holding her new born. And it hits me, like a soldier back from war hearing a gun shot. I'm there, tears are pouring down my face. My baby, not breathing. My baby, being taken away from me. I can smell the hospital. I can hear the monitors beeping. I look at my now toddler, and I think of how close he came to never being here at all.

I breathe.

Why do I breastfeed my children?

I finally watched the documentary Breast Milk on Netflix after I gave birth to Jane. 

One of the more interesting things they pointed out was that every woman who breastfeeds has a reason.

 It is more than just because it's healthier than formula. If it was that simple, no woman would give her child formula. Who doesn't want their child to have the healthiest food they can provide? No, there is more to it. More than the antibodies, more than the lowered risk of health problems including cancers. 

Why do I give my children my breast milk?

I believe in my milk. The way some people believe in God, I believe in my milk. 

My son was born not breathing, and once I knew he was going to live and needed to eat, I knew he needed my milk. I didn't produce anything the first couple days, but once I did, I knew he needed it. His brain had been damaged, and what's the healthiest formula for brain development? Breast milk.

So I pumped, pumped and pumped some more. Before every bottle, and after every bottle. 

3 months in, I gave up. I was depressed, pouring the formula was easier. I was slowly getting less and less each time. I was so proud of those 3 months. 

I still believe breast milk is the best any child can drink. I will continue to give Andy my milk until he's 5, when his brain has done the majority of its development. 

I breastfeed Jane because I can. I don't take my ability to give her what's the most natural source of nutrients for granted. I breastfeed for women who can't. I breastfeed because I wasn't able to the first time. I do it for that little smirk she gives me when she's content at my breast.

I can't imagine feeding her any other way.

Twice as Much

As I write this, I can hear the motor grinding on my breast pump and my coffee is cold. I'm pumping the milk for Andy's morning bottle.

After giving up pumping when he was 3 months old, I never thought I would miss him having my milk so much. Now its a treat to have the time to pump for him.

Balancing both kids is easy and hard at the same time. Its twice as many diapers, twice as many trips to the car, and twice as much love.

Story of getting a stander pt 3

Within two hours of submitting for a medical review our claim was denied. Based upon the diagnosis there is not supported  documentation in medical journals that show a stander is a necessary piece of medical equipment.

I told her I had only one question.

Is there a diagnosis out there that does qualify for a stander?

She said no, not in my experience. There is no proper documentation that shows it to be necessary for any diagnosis.

Appeal information is coming in the mail. I'm going to appeal this. I have an advocacy group I'm contacting on Monday for help. I cannot let this issue go. Andy has received a stander from TRAID yesterday that fits. We do need a tray for it and we are open to anyone who might be able to help put one together.

If I let this issue with the health insurance go, not only am I letting down Andy, I am letting down every parent and child suffering that needs help with a stander but this insurance company won't help them.

I will change everything I can for Andy. I will make this world a little different. I am only one person, but every time something changes it is one person and it is everyone at the same time.

Story of getting Andy a stander pt 2

I'm stuffing puffs in Andy's mouth as I type in hopes of him letting me have a few minutes to write this up. Starting yesterday, at around 4pm when waking from his nap, he's been screaming. Not for a particular reason, except he wants to be held. Mommy can only do so much holding!

I called the health insurance company to verify what steps needed to be taken to acquire a stander since our insurance became active today. What do I do with the prescription from the doctor? How do I submit for a medical review?

I'm told to contact the in-network provider I was given, and to give them the prescription. Called the company and they don't sell standers. During this, I received a voicemail saying the prescription is ready. Have I mentioned what a great team of doctors we have on our side? His orthopedic doctor is going on vacation for 3 weeks and she made sure it was ready.

I called the insurance company again. (This is call #3 for those counting) and this time I'm told that I should read the prescription to them when I obtain it, that's how the medical review process works. Once that's done, they will provide me with more providers. I drove out to Utica, and called to submit the review from my car in the parking lot. It will take 3 business days. I should hear back on Tuesday or Wednesday of next week.

If not approved, I confirmed there was an appeal process.

I'm nervous because instead of stating cerebral palsy as the diagnosis requiring the stander, the diagnosis code his doctor provided was for hypoxic ischemic encephalopathy. This is the initial cause of everything that's involved with Andy's condition.

Here is a link if you would like to learn more about hypoxic ischemic encephalopathy.

http://emedicine.medscape.com/article/973501-overview

Story of getting Andy a stander

If I tell you the story of how we got a stander for Andy I would have to start at the beginning. The very beginning.

Back at the beginning, both myself and my husband were unemployed. My husband was finding odd appearances he could make, sometimes he had one or two a month, some months he had none. We lived in a one bedroom apartment in NYC with my in-laws. It wasn't easy, it wasn't as hard as others had it. My husband looked for work for 18 months until he received the call from Oneida County. Our number was called. A call that so many college and law school graduates never receive.

We still struggled mightily. We were thankful for the food on our table, and Andy's medical bills made us become very far behind. Then a light came- help from charity for children, a local charity in Syracuse. They help us now with the medical bills.

In July of this year, Andy's physical therapist informed me he was getting to the age where a stander would be beneficial. I had never heard of this device before. She put in a request with TRADE for Andy to receive a stander when one became available. At last, in September, one was available.

A very nice man who worked at UCP drove it home for me in his pickup truck because it would never fit in my car. We placed Andy in it, and it was FAR too big. We returned it shortly after.

And we waited. And waited. I called my health insurance company at the time, and they only cover 50% of medical equipment after a pre-authorization process. We waited some more.

And opportunity for better employment came open to us, and my husband applied. He was offered the job, and with the job came a new type of health insurance.

I prayed. I don't talk about praying often, it's intimate for me, but here I am talking of it two blog posts in a row.

I took the leap of faith. I told Andy's PT that we could not wait any longer. It is November, it's been 5 months. Begin the process of getting the stander, we will go through the new health insurance and whatever they don't cover we will figure it out.

AKA we might eat ramen noodles for months. We will figure it out.

Let me explain what a stander does. It stands a child who may or may not have head control. By being in the standing position, bones and muscles continue to grow and develop properly. Unfortunately if a child with cerebral palsy does not have one, he or she will most likely need surgery to correct the damage caused by not having one. It increases the chances for a child to stand, and one day walk with or without assistance. It increases general health as well.

I received a call last night from the therapist. She told me the company she uses to obtain medical equipment informed her the stander would cost $2,000-$3,000 out of pocket. We would pay them directly, then if, and only if because a lot of insurance companies do not cover them, we could be reimbursed by our insurance for the amount they cover.

I cried for hours. The guilt was so overwhelming I couldn't eat. All I could think about was the physical possessions that I've so selfishly acquired during the last year. Especially the vehicle that I drive. Would I not take back that vehicle if I could so Andy could have a stander? What value did my personal belongings hold if I could sell them to give him what he desperately needs?

It was a rough night. And despite what everyone tells you, daylight brought no relief.

I finally called our new health insurance company, our coverage starts tomorrow.

If you provide them with medical information and a prescription and wait for approval, and go through an in network provider, they do 100% coverage with nothing out of pocket.

Now I've called and left voicemails for therapists and doctors. I'm ready to do this.

15 month check up

Today was Andy's 15 month check up. Let me share with everyone what we discussed:

He's no longer on medication.
He receives 4 therapies, 8 times a week total. We are increasing to 9.
His tone is reducing.
He's verbalizing.
He's gained a few ounces.
He's healthy.

And that's all. No talk of "milestones" or other measurements that try and push one child in front of another.

I am not ashamed. I am proud. I am not in the "milestone" rat race, and I do not believe that another parent is better then me because their child can hit those "milestones" that mine cannot.

Those "milestones" don't make the parent. Just like they don't make the child.