Travel & Changes: Part 2

Travel & Changes: Part 2

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~

Travels & Changes: Part 1

Travels & Changes: Part 1

 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.IMG_5912.jpgIMG_5298.jpgIMG_5470.jpgFullSizeRender 3.jpgIMG_5403.jpg

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.

 

 

 

 

 

 

 

Gallery

Growing Pains

Little A is growing before our eyes! She is getting longer and stronger, and has another tooth coming in up top~which is now causing her to be whiny and sleepy and clingy, none of which we have experienced with her before and we are finding just a  little unnerving.  She is participating more at Little Gym, spending less time attached to her momma and more time exploring (though still not wanting to interact with other kids!).  Yesterday at Little Gym, she reached for and allowed a stranger to hold her, snuggling into this woman’s shoulder as if she’d been doing so all her life.

While not rolling by herself, Little A loves  being rolled; she’ll get into her perfect Downward Dog pose and wait for one of us to grab her legs and roll her forward…and can do this one activity for 30 minutes or more with many giggles and smiles.  She is growing up and it is hurting my heart. While I am encouraging her to play with others, and to try new things, I am crying inside each time she does.  She’s not my little baby anymore, and I am having a hard time adjusting to her growth and newfound independence.  Three-quarters of me is cheering her on, the other quarter is wanting to hold her close and squelch everything that severs her dependence on me.  I want to keep her little, knowing that I can’t.  I expect this is how every mother since Eve has felt about her child’s growing up.

She is making great strides with the feeding therapist, too.  They are currently focusing on drinking from a cup.  The therapist says that she feels Little A has a good grasp on eating, but in order for her to “get off the tube” (meaning her g-tube) she needs to be able to hydrate…which means drinking water and other liquids from a cup.  This is something that I think Little A wants to do, as she is always reaching for and putting her mouth on the rims of our cups, but whenever she gets a little bit of liquid in her mouth she panics and quickly pulls back from the cup.  We work on giving her chances to drink without forcing her to do so; it’s frustrating, and messy, but will be so worth it when she can eat and drink like a typical child. We are waiting for the day~

Little A had an appointment with her cardiologist on June 19th, and received another good report.  She had an echocardiogram and Dr. Roten said Little A’s heart looks fabulous! So much so that she no longer needs to take Epaned (her heart medicine).   We spoke with Dr. Roten about our travel plans and made sure it is fine for us to take Little A to the mountains of New Mexico~we need a fun little family trip after the stresses of the past three years, and I am really looking forward to experiencing Angel Fire through my daughter’s eyes! No other cardiac appointments until January 2018.

I have been experiencing growing pains of my own, of a different sort.  I have made the decision that it is time to return to work, but have yet to find a company or organization that wants to welcome me into their fold.  I receive rejection after rejection (from approximately 5% of the applications I’ve sent–the rest haven’t bothered to respond at all, which I find a little rude and disheartening), and it’s making it difficult to continue searching.  One company that sent a rejection response actually mentioned my current stay-at-home-mom status and not in a positive light.

I didn’t expect my job search to be easy, but I also didn’t expect it to be this difficult.  I funded my education with government loans…which I have to pay back.  I  cannot do so AND help provide a decent life for my daughter on $35,000 a year thank you very much.

Lots of people I know are struggling, either in their current job or in their search for another one.  Most of us are highly educated and have been heavily involved in philanthropy and volunteerism, so why is finding work so hard for us? I don’t know.  But for me, part of it is that I am no longer willing to accept positions that I am not excited about and that will not lead to greater positions of increasing responsibility while also allowing me to be home with my family as much as I would like to be (meaning I no longer want to work nights and weekends!).

Do all parents of children with DS and a CHD go through this or is it just me? I am unapologetic of my decision, made with support and encouragement from Little A’s Daddy and at the insistence of her cardiac team, to quit working and stay home with Little A. It is not a decision I regret, and I am extremely grateful for this opportunity to nurture and care for my own child and not have to rush off to a job (to her possible detriment.)

Have any of you gone through similar circumstances? Have you quit a job in order to stay home with your child?  Was returning to the workforce harder after staying home? I would love to hear from you regarding your experiences.

One more piece of news: we have been watching Signing Time on YouTube and are learning sign language.  It is actually fun, and not as difficult as I was expecting.  I don’t know how much of it Addison is retaining (she’s only two, after all), but she does seem to recognize and understand the signs for “more” and “again”, as well as “thank you” and “hello”.  Do any of you use sign language to communicate with your non-verbal kiddos? If so, please comment about your experiences and how or when you learned to sign.  Thanks for checking in with our family and I’ll write another post soon <IMG_4564

 

Our Big Little Girl

Our Big Little Girl

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!

Gallery

The Fight Continues…

We lost our  first and second appeals to our former health insurance company, so Little A has not had any therapy for seven months.  Said insurance company is also dragging its heels on paying the home health company for services rendered, so that company is not willing to continue working with Little A–even though we have a new insurance company who will pay for up to 60 visits per calendar year (which isn’t a lot, but better than the nothing she is getting right now.)  I am in the process of filing a complaint with the Texas Department of Insurance, and am gathering documents when I can find the time.  I’m also filing a complaint against the home health company because this entire situation is their fault.  Moving on…

 

Little A is now off her feeds for ten hours a day, so she is actually beginning to feel hunger and indicate that she wants to eat.  She mostly eats pureed foods and baby food, with some teething cookies and biscuits thrown in so she can learn to bite and chew.  She’s got the biting down, still trying to figure out the chewing, and now we’ve added drinking from a cup to the mix.  She refuses the sippy cup, wants to drink whatever it is we have in our glasses, and hasn’t yet figured out how to keep liquid in her mouth and not let it dribble out.  Hoping that the feeding therapist we’ve found will be able to help with that, and that she is able to begin working with Little A soon.

We’ve had to have two of Little A’s specialists fax Compounding Exception forms to our new insurance company, hoping they will grant the exception and cover these medications so we no longer have to pay so much for them and so we won’t have to switch her medications.  Please pray for my sanity because this experience has not been fun and is beginning to leave me short-tempered. Not cool. I know that in the grand scheme of things, our family does not have it so bad.  But I would LOVE to go back to being that family that never has issues with their health or their insurance. That would be great.

There are other, good, things happening in our lives. Chris and I have switched to a ketogenic lifestyle, with intermittent fasting, and the results have been good for both of us.  What this means is that we eat one meal a day (or separate it into one meal and a small snack) that is high in fat but low in carbohydrates, and squeeze most of our calories for the day into that meal.  Our fasting window is 18 hours, with six hours in which we can “eat our calories”.  I love it!   While I’ve only lost seven pounds so far, Chris has lost sixteen.  We both feel great, and seem to have more energy than before (of course we do! We aren’t eating sugar or carbohydrates!).  We keep track of our food and beverage intake using the MyFitnessPal app, and since we both have Apple watches we use the health app to track our steps and calories burned…and share it with each other to keep us honest and focused.

I have also been selling (and buying!) like crazy through the Kidizen, Poshmark, and Mercari selling apps.  If you don’t know what these are, check them out! It really is addicting, and I love the whole “let’s make a deal” feel to it.  I’ve had a couple of bad experiences, but mostly good ones.  I’ve sold a bunch of Little A’s unused or gently worn clothing and toys, which has allowed me to purchase new clothing for her.  She now has more clothing than her father and I together, and I am to blame.  Who knew that buying children’s clothing could be so fun and time-consuming??? It’s also allowed me to be able to set money back for her second birthday party, which is coming up in a few weeks.  CanNOT believe my baby girl is about to be 2 years old…where has the time gone?

I’ve also discovered this product called LipSense. Have you heard of it? It’s amazing!!! It’s lipgloss that literally lasts all day long…as long as you use the clear gloss on top of the colored gloss and reapply often.  But I love it! So far I only have one color, as they are $25 apiece, but I have a list of colors I want to purchase once I have the money:-) I am a makeup junkie~ just ask Addi’s daddy.  He calls me a makeup hoarder.  Which I kind of am.  I don’t wear makeup every day, but I collect it like I’m running out and am especially addicted to lipstick and lipgloss.  And eyeliner.  And eyeshadow, now that I am thinking about it.  My favorites are Bare Minerals, Urban Decay’s Naked Eyeshadow palettes (I have 4), and Smashbox eye trios.  For lips I love TIGI, Mary Kay, LipSense, Buxom, Clinique, Estee Lauder, and Smashbox.  I can’t seem to help myself:-)

Last random thought before closing today~ I currently have an A- in my Finance class for my MSA degree.  The last item standing between me and my A- is the final exam, which I plan to take tomorrow.  I never, ever thought that I would make an A in Finance, so I am doing a little dance of joy over here in my chair with my Starbucks on the table next to me. Please say a prayer or send positive thoughts my way~ I need to keep my A-. My current GPA for my master’s program is 3.7 and I need it to stay there.  Thanks and good evening~

 

 

 

 

 

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! 🙂