Spring in the City

Spring in the City

(Written on April 5th~ please forgive my procrastination in posting) 

 I love springtime! I always have.  Spring brings the Easter bunny…and Little A’s birthday:-) Addison turned three on March 31st, and had great fun doing it.  Our house is still under renovation, but we spent two days putting our kitchen back in order so that we could use it and the living room (where all of our kitchen stuff had been hiding in boxes) for Little A’s party.  

 This year’s cake–a strawberry drip cake with lemon filling–was not a big hit with the birthday girl.  She took a swipe of frosting and a wee bite of cake, and wanted down to play.  Thankfully the adults weren’t so picky and everyone had a slice.  Some of us even had a cake truffle (or three!).  Little A received lots of presents, but her favorites were a Princess Poppy doll and a Princess fort. She LOVES the movie Trolls,  Princess Poppy in particular. We’ve watched that movie COUNTLESS times.

Little A’s eating habits continue to amaze~ she is eating almonds and pecans! Her feeding therapist says if she is eating these without issue than there isn’t anything she can’t eat:-) Yesterday Little A ate a 1/2 cup of broccoli cheddar soup and 1 cup of Annie’s organic mac-n-cheese with one hotdog cut up into tiny pieces! Then, at dinner, she ate several carrot and cucumber rounds dipped in homemade ranch dressing.  The kid is hungry!!!

Her dad and I made the decision to stop her medicines a couple of weeks ago; we had been weaning her off of them, and had weaned her down from 3 times a day to once a day on her Bethanechol.  Our house in under construction right now, and the painters were working upstairs; they had removed everything off of our bathroom counters and our closets and dumped them into the man cave; it was three days before I realized that Little A hadn’t had her Bethanechol or her Periactin…and she was fine!!! No vomiting, no unusual fussiness. So, we chose NOT to give it to her.  

I contacted her GI doctor to let him know what we had decided, and his nurse called back and was not very happy (she advised me she would be documenting that we chose to discontinue meds without doctor consult.)  I told her I planned to discuss with the doctor at Little A’s next visit in May, but that as long as she continued to do well we would not be continuing the medication.  It’s now been 14 days since she had these medications, and she’s doing so very well.  Best decision we’ve made in my opinion.

I have been worried about Little A’s development lately, so I ordered seven books from Amazon related to parenting children with Down syndrome.  I am halfway through Down Syndrome Parenting 101: Must-Have Advice for Making Your Life Easier by Natalie Hale.  I am SO GLAD to have found this book!!!  It is an excellent resource of Hale’s experiences not only as a mother of a son with DS, but as a reading teacher of children and adults with DS.  Throughout her book she lists recommendations for websites, books, learning applications for ipads and iphones, and so much more. I’ve already carted several of the books she recommends to help children with DS learn to read, and yesterday I downloaded two of her recommended apps to my iphone. 

Because A is mostly nonverbal, we are not entirely sure how much of what we say is understood by her.  I am hoping these will be a good starting place to encourage her learning…and maybe encourage her communication skills beyond growls and pats on he leg or arm for our attention.

The school’s diagnostician has changed the date and time of Little A’s evaluation three times now, and it is currently scheduled for April 10th at 12:30pm.  If you are the praying kind, kindly pray for all of us that day.  We’ll need it:-) 

If there’s a particular book that was helpful to you in your Down syndrome journey, or a game or learning application that your child with DS loves, please share it in the comments.  I’m always looking for ways for help and encourage Little A’s learning and development and I enjoy learning from fellow DS parents.  Thank you for following our journey~~~~~

Winds of Change Are Blowing

Winds of Change Are Blowing

IMG_1754.JPGIMG_1638.JPGIMG_1667.JPGIMG_1755.JPGSo much change! For those of you who don’t know me well, I don’t handle change gracefully.  And lots of change all at once? I’m a total stress-pot.  And I’m stressing now.  Between school, my part-time work conducting home studies, the home renovation, all of Little A’s appointments, and staying on top of my new business I feel like I am being pulled in too many directions.  Knowing that everyone feels like this sometimes does nothing to ease my feelings of guilt and concern about whether I am making the best choices for my family and my daughter.

Our home renovation is well under way~ the granite guys are here today, removing our old countertops and installing new ones in the kitchen.  Other guys are staining the built-in bookcases in the living room, and painting the cabinets above and below the wet bar.  It’s a flurry of activity, and it’s making me crazy. All of our stuff from the kitchen and pantry is now in boxes cluttering our living room, laundry room,  and The Stone Room…it’s chaotic and messy and is bringing out a little OCD in me that I never knew existed.  I long for quiet and tidiness, to have everything back in its rightful place thereby restoring tranquility throughout our home.

I have also been reminding myself that we are lucky to have a home…the neighbors directly behind us (we share a fence) do not.  Two weeks ago they had a fire that originated in the garage…three hours later their house was engulfed in smoke and no longer inhabitable.  The people in our neighborhood banded together and began coordinating a relief effort for the family: donations of clothing, food, gift cards and money began pouring in.  I’ve always liked this neighborhood, but after seeing how our neighbors joined together to help a family in need,  I love it.


I called the GI dietician at Children’s Plano that works with Little A a couple of weeks ago.  I told her how much Addi has been eating, in addition to her feeds, and she agreed to drop from four daily feeds through the g-tube to two feeds.  For the past two weeks, Little A has only been getting 335 mLs of formula through her g-tube instead of 650 mLs.  She’s been consistently taking in anywhere from 550 to 700 calories by mouth, and between 210 mLs and 300mLs of liquid (her favorite is V-8 juice).  Her feeding therapist says that Little A seems to be weaning herself off of the g-tube, which is fantastic!

Speaking of Little A: she has been anti-participatory (is that a phrase?!) during Little Gym the past couple of times we’ve attended.  Not sure if it is because she hadn’t been there in two weeks, or because she just isn’t interested in learning new skills.  She prefers to spin in circles in time to the music and scoot away from my attempts to encourage her participation.  I am torn between letting her do her own thing and forcing her to try new stuff. She’s only three years old (in 17 days), and I have to remind myself that she learns differently from other kids and that she’ll do things when she’s ready to do them.  Not comparing her to other “typical” kids is something I struggle with, and it shames me to admit it.

I met with a family yesterday who has restored my belief that people are generally good and want to do the right thing.  The parents have two children of their own, and have been caring for two children belonging to another family member for the past three years.  They are hoping to house the other four siblings of the two children currently placed with them, which is the reason I was in their home.

This family is renovating their 1700 square foot home to accommodate the addition of more kids: they enlarged the existing bathroom, added two closets, knocked out a wall between the living room and kitchen to add better sight lines, put in a kitchen pantry to make more counter space, and are adding a second bathroom… All because they want to keep six siblings together.  I worried that they would struggle with eight kids (I would!), but in talking with the neighbors I realized that this family truly has a Village helping them.  I think they’ll be fine 🙂


I almost forgot the biggest change of all! I joined a fabulous team of women–go Team Believe!–as a consultant with Rodan+Fields!!! I started using the skincare products nine weeks ago and began noticing visible changes in my skin within seven weeks. I can’t sell a product I don’t believe in, and these products are wonderful.  My crows feet? Almost invisible.  The dark spots from sun damage? Fading away.  My skin is soft, smooth, and looks AMAZING! I’ve only worn makeup twice in eight weeks.

I launched my business on February 22nd, and my mom was my first client:-) This is HUGE because my mom hasn’t used anything besides Bare Minerals skincare and makeup since the 1990’s, and also because I was an independent sales representative for Silpada jewelry for six years and she never bought a single thing from me! I hope she will love the R+F products as much as I do.  (If you are interested in learning more about Rodan + Fields products or business opportunity, leave me a comment below.)

Stay tuned for updates on the home renovation, Addison’s school evaluation, and Rodan+Fields products~~~~


My Little Beast

My Little Beast

I met with the diagnostician, the Occupational Therapist and Speech Therapist of Prosper ISD last week.  They requested that I not bring Little A to this meeting, so I did not.  They asked me questions about Little A, about her strengths and weaknesses, and if I was aware of any requirements she would have for school.  I could think of none on the spot, and was told that it was okay if I couldn’t, they would address that during the evaluation process.  Our meeting lasted 45 minutes, and they advised that it would be late March or early April before they could schedule the evaluation. I left with more questions than I arrived with, and jotted a few down in my notebook so that I will remember to ask at the evaluation.

Little A had her eye exam at the Retina Research Clinic in Dallas last week, and after five minutes of holding up squares of paper with different shapes in different locations told us that Little A’s eyesight is on the lower end of normal for her age and diagnosis.  What they could not tell us, because A refused to cooperate, is whether she has astigmatism.  For now, no glasses.  She sees her eye doctor again in August, and we’re hoping she’ll be more willing to cooperate at that appointment.

While I am nervous for A to start school, I am proud of her for moving up to Beasts at The Little Gym:-)  She has been having so much fun there, and is participating more and more each time we go.  The tough part now is getting her to the gym earlier; Little A sleeps late, usually between 9am and 10am…and all of the time slots for the Beasts classes are between 9:30am and 10:15am.  She was awake early enough on Tuesday to go to Little Gym, but this morning when I tried to wake her she would. Not. Wake. Up.  I rubbed her back, I smoothed her hair back (she hates both of these and will usually sit up when I start doing either), and all she did was roll over.  I attempted to pick her up and she cried, so I let her be.  It is now 11:30am and my little beast is still asleep.  What are some ways you wake up your little ones? Leave your ideas in the comments below~ this mama needs all the help she can get!

Chris and his sister have decided to renovate this house before putting it on the market.  Chris works for a mortgage company and is looking into applying for a renovation loan through his company; the interior designer that Angela (his sister) found recommended $35,000 worth of renovations before selling. Ugh.  I have only lived through one renovation, and it was awful.  We have a lot to pack up and move out of here before any work starts, and that’s only if Chris can secure a loan. Those of you with small children, did you stay in your house during renovation or did you stay somewhere else? A becomes agitated at loud noises, and I’m thinking it might be better to stay somewhere else during the reno.

Little A is becoming more independent, and more resistant to help from mom and dad.  She wants to do things herself, which I love, but still will not use words to communicate.  She points to things she wants, or will lay down (after making sure we are watching) and look to where the item that she wants is hiding…she will NOT, however, speak.  Or even try to speak.  Everything that I’ve read says that this is normal and not to worry, but how can I not? I want her to talk to me! I want her to be able to tell me when she’s tired or hungry.  I want her to repeat words after me.  My stubborn little miss, though, simply refuses to do so.  Maybe school will help with this? I don’t know, but I am hopeful.

I have doubled my efforts to obtain employment, and I am still hopeful that I will find work that allows me to mostly be home with A. I want to take her to and from school, and I am leery of leaving her with a stranger.  I know lots of people do so out of necessity, I just don’t want to be one of them.  I want to be the mom that attends school parties and field trips, and watches sport practices and has lunch with A at school.  She deserves that, and so do I.  Now to find a way to make it happen…stay tuned~~~~




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.









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!