tap…tap..tap…you there?

I wouldn’t blame you if there is no one left reading this blog and all I get is radio silence. I can’t believe that it has been about 4 months since I last updated. I don’t know why but I haven’t been motivated to post. So much has been happening in our world – mostly positive!

On Roo…

She’s doing great. My little doll. She’s walking and running and trying to jump. She has more words:

  • Beesh (beach) ball
  • Bool (school) bus
  • Ornsh (orange) ball
  • Baby
  • Gee (what she calls her stuffed Roo, short for Kangee) and Mama’s Gee (she found her back up one and thinks it is mine!)

She gives everything a name (e.g., Mama Beep Beep, Dada Beep Beep, Baby Beep Beep for her cars). It’s really cute.

Her imagination has taken off and is really into imaginative play. Someone gave her a tea set and she makes tea (dee) for her stuffed animal friends and us. My parents gave her a Fis.her Pri.ce doll house as an early Christmas present and she loves all of the characters and has them play together. I love watching her mind work.

She has made so much progress yet still has so far to go. The genetic test came back normal – YAY! But leaves us with questions still as to why she is delayed. She is still about 9-12 months behind. She’s gaining weight slowly but surely. At her endocrinology  appointment, she weighed in at 24 pounds (with clothes on) and is 33 inches tall. Everyone is so surprised when I tell them that she’s almost two and a half. She’s my tiny little bug.

We saw a biochemical geneticist earlier in the week and she ordered some additional tests to see if we can make some more progress in determining what is causing her delays. She warned us that we may not find anything and that it might take years to figure out why she is behind. (Not very promising)….

Roo started “school” twice a week in September. She is doing great. I drop her off and she says, “Bye Mom.” She is so happy to see me when I pick her up. I thought she would struggle but she only cries if we’ve missed a day or two and then by the next time she’s ok. We’re working to get her more engaged in playing while she’s at school but she still needs a teacher to guide her to make a choice. I seriously thought that I would be the mom whose child cried the entire time but she doesn’t! I’m so pleased

Roo's first day

Roo’s first day of school; there’s a one way mirror so I can spy on her! She took her Roo with her for company 🙂

On the Montessori school…

As for my Montessori school idea, I have a more promising idea in the works. I can’t wait to share. It is similar to a school but even better and will make a difference to even more in our community. It will be Montessori inspired and will be play based 🙂 Stand by…I’ll do a password protected post on this in the very near future to share more with you, if you’re interested.

On me…

I’m OK. I’m motivated on so many levels by my new project that I can only move forward and be excited. Marriage is not motivating at all. A part of me just feels like I’m going to stay married until my new plan is in place. I’m going through the motions. I’ve asked for marriage therapy and tried it with him unsuccessfully and asked again without any response. We lack any and all intimacy. I’m so sad. I’m so lonely. I don’t know how we can turn things around…

On us…

We are visiting my parents for Christmas in Europe. I’m really looking forward to it. I can’t wait to see them and celebrate one of my favorite holidays of the year. Roo loves my parents so much – she calls them Ma and Pa. I don’t look forward to a 14 hour plus flight but it’ll be worth it! She and I went to Florida in October and she was a great little traveler. I think she’ll do great and it’ll be easier with another set of hands to help!


On you…

I’ve been silently reading/following and cheering all of you on from afar. I love the progress that your little one(s) have been making. If I don’t make it back online before the end of the year, I wish all of you a wonderful holiday season and Happy New Year!


Insurance Shminsurance

We’re still waiting on the genetic testing to get approved by our insurance company. Argh! It is taking forever. I’m not sure why it is. Her blood was drawn for these test 22 days ago.

Some of the tests have gotten approved and completed, yet the most critical ones have yet to even been approved. I’m so frustrated. I spent 30 minutes on the phone with the stupid computer receptionist only to have “her” tell me that their business office hours are over.

I’m too f’ing busy to call during the work day. When am I supposed to call?

Sigh…just frustrated.

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!


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.


Been Fishing Or Something Like That…

The last two months have been a blur for us. And, I wish I could blame it on a fishing trip. I haven’t posted much for various reasons but I want to take time out of my day to catch everyone up. First, I’ve been really busy with work. I only wanted to work part-time but an opportunity to take on another client fell into my lap and I couldn’t pass it up. I will eventually get back to just 20 hours a week again but for now, I’m up to about 30 hours of billable work a week (the nanny is here around 37 hours a week). That takes away my time from blogging 😦

Additionally, I have been busy with lots of appointments for Roo. About a month ago, we had an assessment done with Kind.ering, a neurodevelopmental center where we live. Their results included recommendations to maintain weekly occupational/physical therapy to help her motor skills (at home); add an educational component to her therapies twice a month (at home, at no cost); add a weekly co-op Mommy and me class for Roo and me to go together (at Kin.dering, at no cost); and look into seeing a neurodevelopmental pediatrician as well as get genetic testing done. To our surprise, they didn’t think she needed to start with speech therapy right away (which I disagreed with).

This week was our second co-op class. Roo is one of seven kiddos – all of whom have a varying degree of developmental delays (the spectrum is one child has speech delays and another has Down Syndrome and everything in between). Interestingly, she is the only little girl. She really has enjoyed the class. We begin with gross motor play time in a room with a lot of balls, things to climb on, riding toys, etc. Then we move into the classroom, where we participate in circle time involving singing and movement. After circle is free play with any of the toys and activities in the room. There is also an art project available for the little ones to do, led by the teacher’s assistant. Below is Roo’s art project (done with a lot of help from Mama). After play time is snack time, where the teacher has the kids make choices and leads them in sharing a meal at a table. It is so cute. I’m loving the class and I think Roo is adjusting well. She loves to watch the “bigger” kids.


Our home services started as well. Her physical/occupational therapist is really nice and she always brings a fun toy with her and leaves it for the week. Our educator is also her co-op teacher, so it’s nice to have a familiar face. I’ve asked them to incorporate speech into all of her services and to do an evaluation with her this month and start speech therapy in April. They’ve agreed and I hope they follow through. I will push for it.

We have an appointment at Sea.ttl.e Child.ren’s Hsp on May 1. I’m nervous they will find something that leads to more complicated, long-term treatment to get Roo up to speed. But, I can’t go there yet. I have to just deal with what we know. I’ll keep you posted.

We also had a recent appointment with Roo’s pediatric opthalmologist. She patched for six weeks and it didn’t do anything to help. So now she needs to wear glasses again. This time for three months and then we will assess if we need to proceed with surgery. I’m worried that she won’t wear them. We shall see. We keep the same frames but got a new prescription for lenses. I pick them up tomorrow or Thursday.

So, as you can see. In addition to work, we’ve added some additional activities for Miss Roo. We are very busy over here.

Roo is still a nursing machine. The nanny was out sick for a few days last week and so I spent much more time with her than usual during the week. She wanted to nurse at least once every hour. I think it’s for comfort and snuggling but she is not as close to weaning as I was hoping she would be! We had gotten down to nursing in the morning when she woke up and at night right before MH took her up to bed. But now, it’s as often as she can get. I have a weaning plan in mind that I’ll write about in a separate post.

I’m doing much better. My anti-depressants seem to be working as is my daily resolution to stay positive and find gratitude. Don’t get me wrong. I have plenty of days where I’m negative. I’m still not happy with my marriage. In fact, I’m disappointed to discover that even with anti-depressants working that I’m not more satisfied with my marriage. We’re at a place where we are very cordial to each other but we may as well be roommates than husband and wife. It makes me sad. I’m not sure what will happen.

This is what has been going on in our lives lately! I’ve enjoyed reading your posts and I comment when I can – most easily from my phone when I can’t sleep in the early morning hours or late at night. So, if I can’t comment from WP on my phone, please know that I’m still following your journeys and stories. Thanks for continuing to support us! xox

Developmentally Delayed

One of the noticeable variations between Roo and other 9 1/2 month old babies are developmental differences.  Because she was born at 33 weeks and 5 days, she has many physical developmental delays.  I haven’t written about them much here other than her torticollis (head tilt) because they just seem so normal to me.  She’s like a “normal” baby to me until I stop to compare her to the other babies in our mommy group.

Since last October, we’ve been going to an occupational therapist once a week.  Her name is Tammy (changed slightly) and she is wonderful.  I think people who go into these professions are really called to it for a reason.  Tammy helps Roo with her gross motor skills, which is where she is struggling the most.  She is not only behind for her birth age (9 1/2 months) but also slightly delayed for her adjusted age (8 months).  Tammy teaches me different exercises that I incorporate into our daily play and activities such as eating that helps Roo and her muscles to learn how to move properly.

She has been tested twice and each time does really well for fine motor skills but her gross motor skills are very delayed.  For example, for an 8 month old, she should be able to sit without support and might be making moves towards crawling.  She does neither of those.  She can sit with support and can sit on her own for only about 5 seconds before toppling over.  She pulls her legs up while she’s on her belly as if to crawl but doesn’t do anything further.  About two weeks ago, she really started rolling around on the floor as a means to get from point A to point B.

We are not too worried but if she continues to have further delays than our pediatrician will refer us to a pediatric neurologist for further testing.  I’m not worried because she is making progress.  She is hitting the milestones that babies are supposed to hit but she’s just hitting them on her own timeline.

Someone told me that one of the bright sides of having a premature baby is that they stay tiny longer.  It’s true.  And, I actually do love it.  I see the already exhausted moms in my group chasing after their little ones and they’re even more tired.  I will enjoy sitting back with Roo on my lap for a while longer 🙂

Roo also isn’t gaining much weight anymore.  At her six month appointment, she was 13 pounds, 14 ounces.  At her nine month appointment, she was only 14 pounds, 7 ounces.  So, her pediatrician is referring us to a nutritionist to see how we can get more calories into her little body.   I’ll write more about that experience when we get our appointment.  I’ll be curious to see what this person recommends.