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.


Quick Eye Update

We went to Roo’s post-operative doctor’s appointment this afternoon and it went really well.  Her eyes are doing great and they are straight!  They will actually continue to get straighter as the swelling goes down.  We go back on May 14 for another check-up and we will probably know then if she will need to wear glasses still.

On a different note, I went this morning to the gynecologist for a follow-up appointment to check on the lump in my right breast and it’s completely gone!  Woohoo!

A Love Letter to Roo: Nine Months

My love bug,

You are nine months old and in the last month you have grown so much. It is fun to see you change before our eyes. I love you more and more each day.

You are a champion eater! You look forward to your meals and your eyes light up when I ask you if you want to eat. Your favorite foods are pears, apples and prunes. You have a sweet tooth and I don’t know who you got that from – probably me! You’ve also accomplished eating puffs in your own. I have to give them to you one at a time or else you grab them al and shove as many as you can into your mouth at once. It’s hilarious! You are too cute.

Rolling used to be a challenge for you but you’ve gotten the hang of it. If I’m in the kitchen and you are playing in your own and notice that I’m not there, you start to tell and roll and roll and roll until you get as close to me as you can, often stopped by the coffee table. It is so cute.

It is probably time to put away your favorite infant jungle gym because you spend less time in your back and more time on your tummy. It will be sad when I do put it away. I remember when you couldn’t reach the animals because you were so tiny. Now you can stick them into your mouth! You will miss your little friends.

Over the last few weeks, you have started to figure out napping. You let me hold you until you fall asleep and then I can put you into your crib. You still only nap for about 30 minutes once I put you down but I will take it! You sleep really well at night, which I love!!

Your glasses and patch have helped you develop so much. I’m so glad that it is worth the hassle of them. You have figured out how to take each off though and have surprised me a couple of times. The scariest was I put the patch on and we went in the car to our mommy group. When we got there, you had taken it off. I couldn’t find it anywhere. I even looked in your mouth. All the moms told me that you couldn’t possibly have eaten it. But, no less than 30 minutes later, out of your mouth came your patch. I think I even nursed you too! To this day, I don’t know where you hid it in your mouth 🙂

You’re developing a very special relationship with your daddy. You are a mummy’s girl right now but as soon as your daddy gets home from work or walks into the room, your eyes light up. You are so very vocal with him. You tell him stories and shriek with delight when he makes you laugh. I’m so happy and love to listen to the two of you together. I’m so glad that the two of you have that bond. I have a special bond with my daddy too even now!!

You love to sleep in your tummy now. It is so cute. Sometimes I look into your monitor and your little bottom is sticking up and your legs are tucked under you. I want to come into your room and scoop you up. You are so cute!!

I love you so much! You’ve been through a lot in your short life and you make me proud!

Love always and forever,
Your mama