The Waiting is the Hardest Part…


I can’t believe that in 10 days I will have a two-year old in my house. It’s shocking! The past two years have flown by yet dragged on at the same time. We’ve been through so much and still are going through a lot. It’s crazy to think that two years ago, I was laying in a hospital bed praying that I would stay pregnant for as long as possible, not knowing what would happen next.

The last time I updated was last month. The past few weeks have been really busy. I’ve spent countless hours on the phone trying to get our insurance to approve the genetic testing. It costs thousands of dollars and apparently it is hard to get approved. I’m so frustrated. Today, I broke down and spent about 90 minutes calling my insurance company, Sea.ttle Chil.dren’s insurance department and the financial aid office. My insurance company says they’re waiting on Children’s. Children’s says they’ve sent everything requested. Argh! And, financial aid says that we make too much money to qualify.

We make too much money. Yet, we have hundreds of dollars that flow like water out of a faucet each month to cover Roo’s medical visits, her therapies, etc. Add in the costs of our nanny that we need to employ so I can make money to contribute to our household living a less stressed financial life. We have NO extra money and can’t cover another out-of-pocket expense! It just plain sucks.

This waiting to figure out what her diagnosis is just making me batty. I’m starting to self-diagnose Roo. It’s bad. Yesterday, we saw a feeding specialist because Roo has stopped eating well and is wanting to nurse more…yes, you heard that correctly. I was hoping she would be weaned by now but she’s regressing and wanting to nurse. And, because she’s not eating well, I give in and let her nurse because I want to be sure she gets enough nourishment (not that I can imagine there’s a whole lot there)…I digress.

Anyway, the feeding specialist tentatively asked if any of our therapists had suggested an autism spectrum screening. While Roo doesn’t have some of the typical ASD attributes especially the social ones, she demonstrates some of the others: she is very rigid in her routine (she gets very upset if things aren’t just right), won’t wear certain clothes because of the fit (she def has a sensory processing issue), is obsessed with cars, balls and anything with wheels, she can’t string two words together, etc. It has crossed my mind more than once.

However, I just want to get the genetic testing done before we go into this other area. I need to satisfy my need to know if she has or doesn’t have Mosaic Down syndrome or something else. I need to know that first before delving into Autism. And, perhaps a diagnosis from the genetic testing might help explain away some of these other quirks that we’re experiencing.

So we wait.

Today, we had an appointment with her ophthalmologist. The appointment was a disaster because she hates doctors and if anyone or anything gets close to her, she flips her lid. But with a lot of photos taken specifically to show him how her eyes looked with and without glasses, he said that we can push surgery off for at least another three months. We go back in mid-September to reassess the situation. I’m relieved! But, again, we wait!

Until then, I’m getting ready for Roo’s birthday. Like last year, we are just doing a small celebration with just our family. She gets so overwhelmed with others and the attention that she would shut down and cling to me. She’s gotten so many toys recently from my parents including a new play kitchen from I.kea that we’re not doing many gifts. I found a Litt.le T.ikes C.oupe on Craig.slist that I’ll pick up – it looks brand new and I’ll put some money into her bank account.

Our new nanny starts tomorrow. I’m super excited. I’ll share more about that in another post.

Hope you all are doing well! I miss my blog friends and appreciate your support.

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7 thoughts on “The Waiting is the Hardest Part…

  1. I feel like I always write the same thing – but – I’m sorry. I always feel like being in limbo land is the worst of all bad things. At least if you have an answer you can make a plan or deal with it. I hope you get some headway soon. That girly of yours is adorable and you are a good mama. Good mamas worry and stress, and hopefully, like most mama worries you will hear that all is well.

  2. I’m sorry you’re dealing with so much! My blog feed keeps skipping your posts for whatever reason. Stupid feedly.
    I’m sure you’ll have your answers and a plan of action soon!
    I think of yo hand Roo often and am sending positive thoughts your way! Virtual hugs!

  3. She is lovely in every picture you have ever posted and I hope so much that you get good information that lets you all move forward in positive ways.

  4. Happy almost 2nd birthday dear Roo!! Do you guys have big plans? 🙂
    Im so sorry you are having to wait for those test results! It’s not fair that there’s no more empathy and easy care for something so important as a child’s health development. I hope the insurance and the other parts get their stuff together ASAP.
    And I can’t imagine what you are going through thinking about Roo’s development… Just know that you are not alone!! Big hugs and love from over here

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