Infuriated…


This morning I called the insurance company to see what the hold up was on their end for the genetic testing to go through. The woman I spoke to was very lovely and spent a long time trying to help me out. She put me on hold forever and it turns out that they haven’t received a request to cover any genetic testing. WTF? She recommended I call Sea.ttle Child.ren’s Hospital insurance department to see what is going on.

So, I call the hospital’s insurance department to see what the hold up is on their end. It turns out there’s nothing in their file either, so she told me to call the provider. WTFF??  If I could turn purple I would have at that point. I left her a voicemail and sent her an email asking WTF is going on?

I left for lunch.

I returned and had a voicemail from the provider saying:

“The test request wasn’t entered on May 1. But, the DNA banking was done! I’ll put the request in right now with the nurses and ask them to rush the results.”

I’m now 50 shades of purple pissed. I’m really glad that I kept following up because if I hadn’t we would be having this conversation in another 4 weeks and I’d be even more pissed. Do I request a new provider now or later?

I sent her an email back asking when the rushed results would come in.

Tomorrow, we meet with the pediatric endocrinologist. I’m going to speak up with my disappointment and see what they recommend.

Have you had a similar experience?

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A Happy Belated Mother’s Day and Assessment Update


First of all, I want to wish all of my readers and followers a belated Happy Mother’s Day – whether you are a new mom, waiting to be a mom, trying to be a mom, a mommy with an angel in Heaven, I hope that you had a special day on Sunday.

MH and I were in LA with friends on Saturday night and headed down to Laguna Beach for a work event for him. It was sort of strange not having Roo with us to celebrate Mother’s Day but it honestly was relaxing to be away from her. My little one is super demanding and to not have a 22 month old tugging at your ankles, whining for mama all day was a nice way to spend it.

The time away with just MH and me was ok. Nothing earth shattering and no new revelations. I was worried that it would be the end of our marriage but we didn’t fight much – just bickered and got along pretty well. Things remain up in the air around us…

Being away from Roo for four nights was lovely! I enjoyed the time.  She had a fantastic time with my parents and didn’t appear to miss us much, which is good. She had a lot of fun with them and I think because she has no sense of time, that played a role too.

My lymph node biopsy last week went well. It was uncomfortable but not horrible. My neck is still swollen and bruised from it. The results came back on Friday before we left. There are no apparent malignancies (thank goodness) and we will continue to monitor it. I go back in three months unless the lymph nodes get larger or change in some way. Whew!

The first set of tests have come back for Roo. I got the call today from the neurodevelopmental specialist. Her lactate and creatine tests came back normal. But her thyroid test came back very elevated. So, they will run some additional tests using the blood that was banked (hopefully, there’s enough or we have to go back). And, we go see a pediatric endocrinologist in the next two-four weeks to learn more about what is going on. The good news is that thyroid issues are all treatable and are a definite cause of low muscle tone, which I’m hoping is her only issue!

We are still waiting on the results from the genetic testing, which will be another 4-6 weeks. This waiting is just terrible. Sigh.

Again, happy belated Mother’s Day. You all are awesome mommies in your own right!

Roo at the park, while we were away, wearing her glasses!

Roo at the park, while we were away, wearing her glasses!

Neurodevelopmental Assessment Update


First of all: THANK YOU! The support, love and encouragement that I get from you is incredible. In spite of my disappearance, reappearance and whiny post, you all still are my friends and are there for me. Thank you.

Second: My doctor’s appointment was ok. I have a biopsy scheduled on the lymph nodes in my neck on Monday morning. My mom will take Roo to school and MH and my dad will go with me to the biopsy. I hope the results don’t take too long to come back.

Third: today’s neuro-developmental assessment went as well as it could. Sadly, the moment we walk into a hospital, doctor’s office, professional medical building, Roo’s internal alarm bell goes off and she goes from happy, smiley Roo to sad, clingy, sobbing Roo. I had to get weighed and then I had to hold her to get her weight: 20 lbs 15 oz (so tiny). We had to hold her down to get her height: 31 inches. Head circumference: I can’t remember inches but it’s in the 35th percentile. So all good with her growth. The part of the assessment where the doctor wanted to “get her hands” on Roo and see what’s going on was IMPOSSIBLE. Roo kicked and screamed. We finally decided to take it out to the little playground in front of the hospital. Getting her out of that room for a change of scenery helped. She let the doctor see how she was moving and get a sense of where her strengths and weaknesses are in terms of her development.

After watching her play for about 10/15 minutes, MH and I went back into the assessment room with the doctor who gave us her initial assessment findings and recommendations. Right off the bat, she said that she doesn’t see any signs of cerebral palsy, global developmental delays or any signs of brain injury or damage. However, she confirmed that she sees hypotonia, which is muscle weakness or low muscle tone, and ordered blood tests to rule out or identify the cause such as Muscular Dystrophy (at one spectrum, which is highly unlikely but possible) and thyroid problems (at the other spectrum and easily treatable). She also ordered genetic testing to rule out any other things (such as Mosaic Down Syndrome).

The first set of tests will come back within 7-10 days and the genetic testing will come back in 6-8 weeks. Her DNA is now banked for 10 years, which is good because they took a HUGE amount of blood (4 vials) and it was pretty heartbreaking to hold her down for the blood draw.

So, we are now in wait and see mode for all diagnoses. I will wait and see. I will try to focus enough to keep my clients happy, keep snuggling my daughter, and keep moving forward. This Saturday, we are doing our second March for Babies for the March of Dimes. I’m looking forward to it and hope the gorgeous weather we are having in the Seattle area sticks around!

Thanks again for your love, support and encouragement!

xoxoxo

Apologies, An Update and a Big Emotional Dump


It has been too long. There’s no excuse other than so much going on here. I tend to turn to this blog as a source of venting, support and love. The last two months, I’ve probably needed it more than ever but I’ve been so tired, overwhelmed and unfocused to write.

First, a quick update on Roo. She’s doing great. She is still not walking but that’s ok. She’s getting really close. Just this past weekend, she started taking a few (3-4) steps on her own without provocation. It’s so cute. She’s still not talking either but that’s ok too. She has added the word “Ball” and that is almost all she says now. She is obsessed with balls. We also gave my parents names so she can call them by name now: Pa for my dad and Ma for my mom. She LOVES her pa. She still goes to her co-op class at the developmental center once a week. She is so cute there. She now fully understands circle time, snacks, playtime and art. Every week we bring home a new piece of art work, which she proudly shows off to anyone who asks about it. She turned 22 months a week ago!

On Thursday, May 1, is our appointment with the neurodevelopmental pediatrician at Seat.tle Child.ren’s Hos.pital. I’m anxious, anxious, anxious. Not sure what else to share about that until after it’s over and we get results.

Roo’s amazing nanny gave her notice. She’s moving back to Singapore to care for her mother who is ill. I’m so sad. We are searching for someone amazing again (with low expectations).

As for me, I’m a mess. My parents are in town which is great. They’re so supportive. I have so much going on. I feel like I carry the weight of Roo’s life on my shoulders. MH is great with her but he’s the fun dad. He isn’t able or is unwilling to be there for her (me!) beyond the superficial and the fun – he passes her to me as soon as she gets upset and cries unless I walk away. He doesn’t do any of her appointments with us unless they’re the major appointments (like Thursdays) and unless I specifically ask him to do go with me. I’m tired of asking. She is his daughter too. I am basically working full-time too. He also denies it but has been drinking alone at night (one night I woke up because his breath was so smelly of vod.ka). I can’t do it all. I’m falling apart.

I’m exhausted. (If you know me in IRL, please do not comment on FB or Twitter). I have had some enlarged lymph nodes in my neck and I’ve had a couple of ultrasounds to monitor them. They’re getting larger.  I also found two more enlarged lymph nodes (or something) in my groin. It’s concerning. My dad is worried (and he’s a doctor). I go to my doc tomorrow for another follow-up.

One of my clients is driving me crazy. She is demanding more out of me (and I don’t blame her). I’m falling behind because I’m overwhelmed. I can’t focus. I don’t know what to do. We need the crazy good money that I make (but I just can’t handle the pressure of being mommy to a little one who needs extra help, being a working mother, and dealing with a husband who is choosing to check out instead of check in) but I want to stop working as much as I am.

I’m choosing my daughter over my husband. I need to choose work over him too. I need to choose my health over all. I don’t know what to do. I do know what I need to do (actually) but I don’t know where to start. I want to cry. Waaaah! OK. Here’s a cute pic of my girl on her bike (sorry it is so blurry). Thanks for listening. I’ve been reading and cheering and supporting all of you from afar. Sorry I’m not there for you right now. I just don’t have the energy.

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365 Days of Gratitude


I’m trying to do 365 days of gratitude on my Facebook feed. Below is what I wrote tonight. I will update more soon.

Day 30 of 365: Roo underwent another developmental assessment today and we confirmed that she needs further neuro development/genetic testing and some additional weekly therapy sessions. It’s hard to hear that news about my cutie pie but I’m grateful to learn that we qualify for some free support resources and there are people who know more than we do to help us!