Learning to Advocate for My Daughter

Learning to Advocate for My Daughter

Who knew that having a child with Down Syndrome would lead me to advocacy? Certainly not me.  I expected that life with a child with DS would be challenging at times, but I did not expect (though quickly learned) that I would have to battle doctors and insurance companies every step of the way.

It’s exhausting, this life we lead.  Children with DS are similar to yet very different from children without DS. Three weeks ago we were notified by the home health company that provides our daughter’s therapies that Addison would not be receiving services until our insurance company paid for the services she’d already received. A call to the insurance company uncovered that the home health provider was providing incorrect codes when submitting bills for payment.  Thus began the daily phone calls between myself, home health, and our insurance company.

After speaking with our insurance company earlier today, I found out that they retracted earlier payments, going all the way back to January 2016, for Addison’s therapy, stating that the home health company failed to show “medical necessity”. REALLY???? My daughter is feeding tube dependent, has oral aversion, feeding difficulties, related to her previous heart surgery, and this isn’t considered a medical necessity???  I was told that I could appeal their decision, and that to do so I would need to provide as much medical documentation as I possibly can.  Isn’t that what the home health company has been doing?! Whereas they get that information free of charge, I have to pay twenty cents per page for the same information that has already been provided to them by the home health company.  I was so angry and frustrated that I cried.

We already go through so much with Addison, and now we have to go through this?!?!  It’s reprehensible.  All of it.  We do our best, and have tried to keep up with her therapies ourselves, but I am not a trained therapist.  I want to be Mom, just Mom.  Instead of spending time with my daughter, I am forced to make phone calls and look up information on the internet to help “make my case” for medical necessity.  If I could I would wave a magic wand and Addison would suddenly start eating on her own and would learn to crawl or walk,  and there wouldn’t be any need for those therapies.  And the insurance company could stuff it.

 

It’s Fall Y’all~

It’s Fall Y’all~

I love the Fall! Fall in Michigan means apple cider and donuts from the local cider mill, thick sweaters and jeans, and football.  Fall in Texas means it’s hot, hot, HOT!!! And this momma’s temper fits right in with the Texas weather.

We are still waiting to hear back from our insurance company regarding our appeal of their decision that Little A’s therapies are not medically necessary.  In the meantime, we have received a pile of invoices from the home health company that provided these therapies.  They, of course, want to get paid.  And we, naturally, want our insurance company to pay.  There doesn’t seem to be an answer to this dilemma in sight.  

Even though Little A hasn’t been receiving traditional therapies, I have been trying to keep up with the exercises her therapists were doing with her, along with others I found on youtube.  She fights me, and cries, and gets mad and frustrated, which stresses me out, but we have made a few small improvements. I am proud of her, and proud of myself for keeping at it when I really just want to quit.  After all, no mother likes to be the source of her child’s tears and I am no exception.

Aside from Little A’s therapies, I have been kicking booty in my online classes toward my Master’s degree.  I currently have a 3.7 GPA, and an A in my current class, and have done so with the support of Little A’s daddy.  He helps out more when I have a ton of homework to do, and keeps A busy so I can focus.  I appreciate that man more than he knows. It will be worth it when I finally have my degree in hand and can begin focusing on job hunting once again. Surely a master’s degree will ensure a higher pay rate, right??? 

C and I have been watching A & E’s show, Born This Way, and are feeling much more hopeful about Little A’s future.  Those adults with Down syndrome are living life and doing so much; living on their own, getting a drivers license, getting married…all things we worry Little A will never do.  This show gives us so much hope, and I pray that others watching will see so much more in people with Down syndrome than just their extra chromosome.

I have discovered I have an addiction to shopping for Addison Grace~ she now has more clothing in her closet than we do!!! I blame the Kidizen app.  It’s a place to buy and sell children’s clothing, but I tend to “buy” more than I “sell”.  Our favorite items come from Tea Collection, Hallmark Baby, Kate Quinn Organics, Burt’s Bees,  Janie & Jack, Livie & Luca, Matilda Jane, Giggle Moon, Haute Baby…the list goes on and on! Unfortunately my bank account does not, so I am trying to curb my shopping.  But it is hard. You’ve seen her face! How could anyone deny her anything?!

I have also found another app, Mercari, that allows me to list her clothing for sale.  Thank goodness! Between those two apps and eBay I am hoping to get rid of eveything that no longer fits Little A (and pay for the new stuff I’ve already purchased).  Help a momma out! If you need baby girl clothing in sizes 0 to 12 months, check us out! I am Addi’s Momma on Kidizen and TexasDSMomma on Poshmark.

We are always looking for other blogs, articles, videos, etc. related to DS and therapies to learn from.  If you have suggestions, please feel free to leave them in the comments. And if you know of another awesome kids clothing app, please let me know!  Thank you, and Happy Fall Y’all! 🙂

Little A’s Arrival

Little A’s Arrival

Addison Grace was born at 6:07 a.m. on a Tuesday morning in late March, after 36+ hours of labor.  She wasn’t due until April 15th, and my doctor wanted to induce me a full week earlier.  Little A had other plans, however.  I ended up delivering with a doctor I had never met before because my doctor was in another state renewing his board certifications. I don’t think I could have hand-picked a better replacement, and the nursing staff was amazing!! Two nurses stayed with me the entire time, and one nurse even helped Chris hold me still during contractions so that an anesthesiologist could administer a second epidural when the line to the first one was severed (still not sure how that happened, and why it took anyone almost four hours to notice that I wasn’t receiving any medication).

01f2f37c4b7410b4792b5776143ac1fdb79888dc58I was allowed to hold my daughter for less than five minutes before they whisked her away to the children’s hospital next door, so doctors there could monitor her condition and decide if she would need surgery immediately.  Her dad snapped a couple of photos of Little A and mommy,  took a short video of our new baby girl, then sat down to listen as the nurses cleaned me up and Dr. Jacobs sewed me up (I required a single stitch, and thankfully it wasn’t painful after the epidural wore off.)

We were not able to see Addison for 24 hours, but the nurses made sure that I pumped every two hours so that Addison had food.  The next day, Chris wheeled me over to Cook’s in a wheelchair so that we could see our daughter.  Although she weighed 7 pounds and 1 ounce, she looked so tiny laying there in the incubator! We weren’t allowed to hold her, and had to settle for holding her hands.  She was so sweet, and looked perfect to me.

Addison spent six days in the NICU, and we were finally able to bring her home on Easter Sunday.  The cardiology team explained to us that she would be going home with a pulse oximeter machine so that we could “spot check” her oxygen levels daily.  We were told that anything above 75% was good, and that if her O2 levels dipped below 75% we needed to take her to a hospital right away.  We were so afraid that something was going to happen to her that Chris and I took turns sleeping so that one of us was always awake to monitor her. Her skin was dark and dusky, and we were unaware until much later that this was a symptom of her heart condition.

01b58031e6b8e5be0eb535b9577fa01d4179ea0048Life at home with Addison was an adjustment, but an easy one.  After two weeks she slept through the night, though I still had to get up every two hours to pump.  Addison was unable to latch onto my nipple, which we were told is quite common for babies with Down Syndrome, so she was bottle-fed.  This actually made our lives a bit easier, as her dad was able to help with feedings.  I was not producing enough breast milk, so we had to supplement with formula.

Addison was a voracious eater and her pediatrician was pleased with her weight and how well she was doing, so we were completely shocked and scared when I took Addison for her six week check-up with her cardiologist and ended up being admitted to the hospital due to  Addison having three “tet spells” during her doctor visit. She was admitted to Cook’s on Monday, and had surgery on Friday to put in a BT shunt.

We were given updates every hour during surgery, then suddenly a Chaplain was telling us that Addison went into cardiac arrest and the cardiology team had been performing CPR for more than fifteen minutes but she was not responding.  He went back into the CICU (Cardiac Intensive Care Unit) to check her status, and what seemed like an hour later he came back and told us she was stable and they were cleaning her up.  We could see her soon…

Her dad and I went back into the CICU, and I rubbed the only “clear” spot on her arm that didn’t have wires and tubes attached to it.  She looked so small and so sick lying in the incubator.  Everything seemed okay, then machines started beeping and a nurse began calling for a doctor; the room quickly filled with medical staff and Chris and I were pushed back into a corner of the room to watch as a doctor performed CPR on our daughter yet again.  Watching her little body jump off the table with each thrust of the doctor’s hand was too much for me, and I hid my face in Chris’s chest. A nurse noticed we were still in the room and ushered us back out to the waiting area.

015362c526abdd066594e8522e2919f01e9a0b4ed0We were so scared, and so traumatized, by what we had witnessed.  Later I would tell my mom that it was good for us to see the doctors performing CPR, that we saw first hand how they did everything possible to save our baby girl’s life.  And they did.  But it is something I never want to witness again.

Addison developed many complications after surgery: her lungs filled with fluid, requiring a chest tube; some of the doctors thought she was developing what they called “Nec”, and she had to be placed on donor breast milk that had had the fat skimmed out of it; she was unable to be weaned from the ventilator and was on it for so long that she lost her ability to suck…it was one thing after another.  After 54 days in hospital, Addison was finally released on July 2nd and we brought her home with an ND tube.  Second happiest day of my life ❤

 

 

 

The Beginning

The Beginning

0170c1d084a1fef9efb69a1e7e777370079c72b7faI was 18 weeks pregnant when we found out that our baby  was a girl and had tested positive for Trisomy 21, also known as Down Syndrome.  We were driving back home to Texas from Michigan on a Friday in October when I received a call from my OB/GYN’s nurse, asking if I could come to the office on Monday.  I agreed, and hung up.  Chris asked if I wanted him to be at that appointment with me, and thinking it was just a routine visit I said no.

Monday arrived, and I showed up to my appointment with Dr. Smith.  Somberly, he asked where Chris was and I said he was working.  He asked me to get Chris on the phone, and that was my first clue that something wasn’t right.  I called Chris, put him on speakerphone, and together we learned that the test results showed that our daughter (we also found out at that same time we were having a girl) had Down syndrome.

I cried silently as Dr. Smith explained that our daughter was still our baby, and that we would love her no matter what.  He then said that he was scheduling me for an ultrasound with a specialist in Fort Worth, as 50% of babies with Trisomy 21 also had some sort of heart defect…and four weeks later we learned that our precious daughter had two serious heart conditions known as Tetralogy of Fallot and Atrioventricular Canal Defect Complete.

01a3dc98a19c9a743ece782b2478252d1a1faa03a1     It’s hard to describe the heartbreak and uncertainty we felt.  We were overwhelmed by her diagnoses and had a hard time coming to terms with everything we had learned.  Our biggest mistake at that time, looking back, was scouring the internet for information on Down Syndrome, ToF, and AV Canal Defect.  We read worst-case scenarios, we read sad stories of abortion and families choosing to put their babies with DS up for adoption.  After a while I asked Chris to stop telling me of the horrors he read on the internet.  My mother’s heart couldn’t take it.  This was our BABY we were learning about, and I only wanted to concentrate on all of the positive possibilities.

This blog is my way of sharing our journey with others.  I hope someone, somewhere, will find comfort in my words and our experiences.  Maybe I can help another family, experiencing a similar diagnosis, navigate the rough patches and get to the joy.