Last week was a big week for us~ I contacted our school district for information on enrolling Little A into preschool! Someone from the Special Education department emailed several forms for me to fill out, which I then had to return along with copies of Little A’s birth certificate, social security card, my drivers license, and her immunization chart.  I have a pre-evaluation meeting with the school district’s diagnostician on Tuesday, February 6, to discuss how Little A’s evaluation will go.  I am so nervous, but only because I want everything to go smoothly and I know my daughter. It won’t.

On Thursday last week, Little A saw her eye doctor.  He wasn’t able to do a full exam, because Little A fights so hard, squeezing her eyes shut and shaking her head from side to side, so he referred us to a research clinic.  He told me that they have equipment there that he doesn’t have, and will be able to tell us with 100% certainty what her vision is.  His concern is that, from the little he was able to see of her eyes, she’s developed astigmatism.  He hopes to be able to avoid glasses, but in order to know exactly what we are dealing with he said I need to have her checked out in Dallas.  So, she goes in on February 9th for another eye exam.  Fun times!

Little A is using her Sure Steps more, and though she still doesn’t like them I really think that they do help her with stability when standing and walking.  Her favorite thing to do is to take her shoes off and slam her Sure Step-clad feet onto the hardwood floor! I’m hoping that by using the Sure Steps every time we put shoes on her, she will become used to them and they won’t bother her as much.

My fundraising class is going very well, and I received an email today reminding me to apply for graduation 🙂  I still find it hard to believe that I’m almost finished with my masters degree. I didn’t walk across the stage to accept my diploma when I finished my undergraduate degree because I was living in Colorado and couldn’t afford to fly back to Michigan (I applied too late to walk the semester I actually finished classes, so had to wait until the following semester), but I am going to fly to Michigan for this one.  My momma wants to see me walk across that college stage, and I’m going to see to it that she can.

Which leads me to thinking about school and Little A.  I want her to have all of the opportunities that I did, and I want to surround her with teachers who will support and encourage her.  I’m not sure that the public school system is the place for her, but that is where she is going to start and then we will see. She may not excel academically, and she may not want to play sports or try out for dance or theater.  But I want her to have the chance, if she wants it.

Since learning of Little A’s diagnosis, I’ve done my best to surround myself with other families with children with Down syndrome and immerse myself in online communities of parents of children with DS, and CHD, who have walked similar paths and can offer suggestions and support.  I want to learn from others who have been where we are headed, so that it will be less scary and I can be a better advocate for my daughter.  What scares me is that I don’t know enough, that because I don’t know what I don’t know I am somehow taking away opportunities for Addi Grace.  Have any of you felt this way? Tell me your story~

 It’s been more than six months since my last blog post, and I’m not sure where to start with what has been happening in our life.  Things have been turned upside down and have changed so rapidly that it has taken this long for me to adjust and process.

     Chris and I took Little A to Angel Fire, New Mexico in the middle of July.  We rented a fantastic house for one week using VRBO, and it was fabulous.  Little A didn’t seem to be impressed with the mountains, but she LOVED the streams!!! She giggled and smiled each time her daddy stuck her feet in the water, and enjoyed splashing around.  I did what I always do and took hundreds of photos~ will share a few here.

     August was pretty uneventful for us.  I was hired as a subcontractor to conduct home studies for foster/adoption cases.  It is now the beginning of January and I have yet to accept a home study, but I am hopeful my time is coming.

 My online classes began at the end of August, and as usual took up most of my free time.  I managed to receive an A- in  MSA 600– a research class that I had been dreading which actually challenged and engaged me to the point of total enjoyment– something that completely amazes me looking back now…

     In September, Chris’ niece–who, along with his sister Angela, had lived with him since she was 3 years old–was killed in an automobile accident.  The police came to our house (Chris and his sister, Angela, bought this house together almost ten years ago) at 3:30 a.m. and gave us the news.  It was unexpected and impacted all of us.  I don’t remember much from those first few weeks after Caily’s accident except throwing myself into caring for Little A and my studies and trying to think of ways to help Angela get through.

     I’m stuggling with being in perimenopause, but the supplements and cream I have been using have significantly decreased my symptoms.  I am no longer having hot flashes daily, and I can finally fall asleep at night and stay asleep without having to use sleep aids.  I’ve made other small changes, such as only drinking one cup of coffee each day instead of my usual three; I’ve tried to go back to a ketogenic diet with intermittent fasting; and when I find myself getting angry or frustrated or stressed I write in my journal or find another creative outlet.  Connecting with other women online through perimenopausal support groups has also helped me.

Little A is walking more every day~ I took a video of her this morning walking across her bedroom.  It was slow, and there was more side-to-side shuffling than actual walking, but I am SO PROUD of her because she has been trying so hard to walk on her own.  Proud mama moment:-)  Her Daddy and I try to give her many opportunities to walk on her own, but she still prefers to hold our hands (or furniture or the windowsill or the wall) when we’re present.  I want her to become more independent, but as I’ve written before~it is so hard letting her go.

 

 

 

 

 

 

 

Addi Grace turned two on March 31st~ I can’t believe it has been two years since this sweet, sassy little girl burst into our world.  She is a silly, funny, crazy addition to our little family and I love her so very much.  It is because of this that I take every negative thing to heart and as a personal affront to our happiness.

If you’ve been following my blog you know that we have been fighting our insurance company regarding the number of therapy sessions Addi received per calendar year.  We received our second and final denial letter from the insurance company, and our only other option (according to them) is arbitration.  I have been in contact with a very nice woman in the Dallas office of the US Department of Labor, and even she finally threw up her hands and declared that arbitration or court are our only options.

We receive monthly invoices from the home health company that provided Addi’s therapies, and it appears that the insurance company is beginning to pay for previously-denied claims, but there is still an almost $3,000 outstanding balance (from therapies that Addi received from March to July 2016).  Which leads me to this question: why can insurance companies take a year (or years in some cases) to pay medical claims without penalty, but if you or I miss a few monthly medical payments we are sent to collections and our credit is destroyed? Hardly seems fair to me.

It is because of this fight over therapy with our previous insurance company that we have decided to forego all therapies except feeding therapy for Addi this year.  Instead, we enrolled her at The Little Gym.  I’m not going to say she loves it, because at most she tolerates the noise and the other kids there, but I believe that she is learning skills that will help her learn to walk and climb and play.  She turned her first somersault with the help of the instructor and cried the entire time.  But we’ve been going two to three days a week for almost four weeks now, and she finally interacted with other kids on our last visit.  THIS IS HUGE FOR HER!!!!

I really like the feeding therapist I found, and though she has only worked with Addi a handful of times I feel like she has made huge strides in what Addi eats.  I have real hope that Addi will be off the feeding tube and eating totally on her own, and I am very hopeful that this happens by next Christmas as I would like to take her to meet her Michigan family for the holiday.  Baby steps, I know, but there is hope and expectation in this mama’s heart.

Addi took her first bath in the Big Girl Bathtub this weekend, and she loved it! She learned many things, one being that she cannot breathe underwater.  She enjoys splashing and kicking her legs, and moving her hands through the water.  It is fun to rediscover the joy of water through the eyes and actions of my baby girl~and because of this, I have ordered her some really cool bath toys on Amazon.  Hopefully her father will forgive me for buying without consulting him first!

As always, if you have any tips or ideas for exercises or activities I could do with Addi, to help with fine and gross motor skills, walking, pulling up, etc,, please feel free to leave them in the comments.  I appreciate any and all advice: when you have a child with special needs, you rely a lot on what others have already tried and done.  So thank you in advance, and I’ll let you know how it works out next month!

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.

 

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! 🙂

I 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.

     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.