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.


Dealing with Developmental Delays

Roo is delayed in pretty much all areas.  It’s not surprising since she arrived ahead of schedule by almost 2 months, so her adjusted ago is about two months behind.  However, she has several delays that are even greater than the two months: speech, gross motor skills and some sensory motor skills.

It is so difficult as a mother not to get defensive about my daughter’s delays.  I don’t want her to feel bad about them and I don’t want to feel bad either.  I’m doing the best that I can do for my child to help and support her.  We do weekly PT/OT and continue to assess to see when and if we need to pull in other specialists.

When she hits 18 months, in December, if she doesn’t have additional vocabulary, we will meet with a speech therapist.  She currently only says Mama and Dada.  And, she doesn’t say those words every day.  However, she does communicate extremely well – either through sign language or through pointing.  We have good mommy-baby ESP too.  I’m a good mind reader.

For her gross motor skills, our PT is so awesome.  Roo is not walking yet though she does cruise and will stand when holding onto furniture.  She won’t stand with me though – she always wants to cuddle in.  I need to see if she’ll stand with MH.  We do a lot of exercises with her at home.  Admittedly, I’m exhausted by doing PT exercises with her.  We’ve been going to PT for a little more than one year and while I know it is the best thing for her, I’m tired of having to do things with her (Bad mommy thoughts).  I wish she was “normal” and didn’t have to do this extra work.

For her sensory delays, the PT/OT says not to worry too much about it now.  She’s shown some signs of growing out of them.  For example, she used to hate letting any part of her legs and feet touch grass.  But, when we took her to the pumpkin patch a few weeks back, she happily sat in the grass amongst the pumpkins!  Another example is with food.  She feeds herself using a fork (I have to put the food on it) but she won’t pick up certain textured foods (squishy, soft, etc.).  She happily will feed herself cheer.ios or meatballs but not veggies or fruit.  However, just two days ago, I was feeding her carrots, peas and cauliflower and she didn’t like the cauliflower so kept pointing to the other veggies.  I told her to just eat the ones she liked and put the bowl in front of her.  She dug right in and picked out the little pieces of carrot and peas!  I almost cried, I was so happy!

I know that she’s growing and maturing – just at her own pace.  But, it’s hard and it makes me sad to see babies who were born a couple to few months after she was do things that she doesn’t do yet.  Last night was our mommy group Halloween party and all of the kids (even the younger ones) were running circles around Roo.

I know I should not compare but it is hard not to do.  I wonder if she will ever catch up.  Will the doctors be right when they tell me we won’t even know the difference between she and her peers by the time she is two?  I don’t believe so.  I think it will take longer than when she hits two.   I hope I will be wrong but in my heart I know that is not very likely.

Moms of preemies, what has your experience been?  Do you feel the same twinge of jealousy and sadness when your little one interacts with friends of his/her similar age?

PS: Will post a Halloween photo later!