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 <

 

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~