Time to Say Goodbye


It’s time to say good-bye to A Miracle in the Works. My miracle happened. She came into this world with a bang and hasn’t stopped.

At 33 months, she is still nursing, starting to speak in sentences, walking, running, jumping. She’s catching up and probably won’t qualify for continued services once her early intervention program ends at age three in June. We’ll continue to do therapy outside of school on our own but it won’t be covered by the State, as it would be if she qualified. But, she’s doing so well, it looks like she won’t need it!

I’m so proud of my little girl. I’m proud of me. I’m proud of you.

You ladies have been a rock to me. The community online that is built across the Interwebs (from the US to South Africa to Germany to the Philippines) is an amazing one. Your words, support and courage carried me through many challenging times. I thank you.

I’m saying goodbye to this blog because I’m moving on. I clearly haven’t put time and energy into the blog in months and months. For several reasons:

  1. I haven’t had much new to say.
  2. I’ve been so focused on going to weekly therapies with Roo and then working that I’m too tired to do anything with the blog but read and click like to show my support to you.
  3. In my spare time, I’m working on my indoor play space, which I’ve secured all of the funding for and hope to open in the summer.
  4. I felt like this blog was turning into a place to vent about my marriage rather than a place to inspire (and that annoyed me). I can journal privately and not be an annoying blogger.

So, I would love for you to follow my next journey. Search for Roo’s Wo.rld of Di.scovery on Facebook. Or, look for @DiscoveryRoo on twitter.

I hope to see you there. I’ll miss you. Thank you again for everything.

Hopefully, you’ll read this message. In a week or so, I’m going to take the blog down. Sending many positive wishes to those of you who are still waiting for your babies…

I’ll leave you with this recent picture of my sweet girl.

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xoxo

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2014 in review from WordPress


The WordPress.com stats helper monkeys prepared a 2014 annual report for this blog. 2014 was not a big year in blogging for me but I appreciate those of you who stuck with it for me. I resolve to make 2015 a better year for writing. I think it helps me grow in so many ways, both personally and professionally.

Happy New Year to you all and look forward to spending 2015 with you!

xox

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 19,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 7 sold-out performances for that many people to see it.

Click here to see the complete report.

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!

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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!

Montessori and Updates


It’s been too long, so apologies since this might be an extra long post. Time passes quickly and before I know it I haven’t posted in weeks. I’m sorry…life is strange for me right now. I’m in limbo. We continue to wait. The insurance appeal for her genetic testing (SNP array) is still in process. We got a letter from her pediatrician that tells the insurance company that it is a medical necessity. I’m hopeful that will move things along.

On August 8, we meet with the developmental specialist again and I hope that we’ll get some more answers. It’s a follow up appointment and a second opinion combined in one. I was hoping we would have the SNP array test results to go off of but that’s looking VERY unlikely.

At Roo’s two year pediatrician’s appointment, her doctor told us point blank that she believes that Roo is on the autism spectrum. She also told us that the first neurodevelopmental specialist called her and told her that information (which isn’t in the medical record). I’m so confused and sad. It is something that we will look into further on Aug 8. Ugh.

The primary concerns for being on the spectrum include:

  • Being very rigid
  • Being non-verbal (though she communicates through sign and has some words)
  • Obsessed with certain items and actions

It’s scary. At this point, I just want a diagnosis. I want to know what we are facing. Are we facing mosaic down syndrome? Are we facing autism? Are we facing some other diagnosis or a combination of things?

Time will tell and until then I have to practice patience.

In other news, I want to share a dream that I have that I think I will make come true.

When I was a child, I went to Montessori school until 1st grade. I even thought about becoming a Montessori teacher. I burned out of PR and quit my job. During an 18 month period, I took classes towards my Montessori teaching credential. I always knew that I wanted any of my future children to go to Montessori school. I love the philosophy. If you don’t know about Montessori, please check out this link to learn more.

Before we knew that Roo’s developmental delays were as significant and “lingering” as they are, I visited a couple of Montessori schools in the area that I heard were really good. I fell in love with one in particular and even have convinced a friend that she should send her son there too. But, I recently called the director of the school to talk to her about Roo’s delays and to see if they have experience in working with other little ones with these types of delays. Her response was not surprising but also disappointing. She encouraged me to enroll Roo but that she wasn’t confident that they would be able to work with us and so both parties would need to be open to knowing “it might not be a good fit.”

Maria Montessori’s first school at the turn of the 20th century was for children with special needs. Her philosophy was built on providing a solid education for children who had special needs. It worked and many, if not most, of those children she taught learned so much and thrived. So I felt like the response I got was unsatisfactory. If Maria Montessori built her philosophy on helping those with special needs, shouldn’t Montessori schools carry on that same mission?

I shared this information with a friend who is a Montessori teacher working on her certification in special education. She said that I must open a Montessori school dedicated specifically to kiddos with special needs. She said that I have the resources and the know-how to do it.

The school would function as a Montessori school with teachers hired who are Montessori trained and certified as well have experience with special needs kiddos. I would also make sure that all of the extra resources and therapists needed to support those special needs are also available, such as:

  • Speech
  • Motor
  • Occupational
  • Autism
  • Whatever else is needed

I think the school would focus primarily on those with mild to moderate needs but could include anyone with delays like Roo’s, those with down syndrome and/or Autism.

I’m inspired and motivated. I am going to seriously consider doing it. I am doing research to confirm that there is a need and move forward. I’ve already connected with a woman who is a Montessori teacher and wrote a book about special needs inclusion. My therapist gave me the name of someone who just retired from owning her own Montessori school. I’m excited.

What do you think? If you are familiar with Montessori and/or have a child with special needs, would you send your child to a program like the one I’m envisioning?

To close out, here’s a recent picture of my sweet girl during the recent heat wave! xox

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Hypothyroid


At the end of last week, we got a call from Roo’s pediatric endocrinologist. The latest test results came back and her elevated TSH (Thyroid stimulating hormone) levels were even more elevated than the test from a few weeks earlier

May – 8.4
June 12.5
Normal range is 4.5

The endocrinologist wasn’t sure why those levels are high and all of her other test results came back within range. The elevated range indicates that she has hypothyroidism. It could be one piece to the puzzle of why she is developmentally delayed.

So, Roo has started to take 25 mg of Levo.thyroxine every morning before she eats breakfast. Interestingly, the medication is a pill. My first thought was how the he.ll am I supposed to get my 2-year-old who doesn’t eat anything but sweet potatoes to swallow a pill? However, genius instructions showed me how. I crush the pill between two spoons and dissolve it in some water, which I suck up into her medicine dropper. Easy peasy. Roo takes it like a champ!

Thank. goodness.

We go back in three months for another round of blood tests to check her levels and to see the endocrinologist again. Hopefully by then, we will have gotten our genetic testing approved and completed. Sigh.

Anyone else’s little have a hypothyroidism? Did the meds help?

A Love Letter to Roo: Two Years Old


Happy 2nd birthday, sweet girl!

I can’t believe that on Saturday you turned two. You have made me so proud. You’ve been through a lot in your two short years and your demeanor and spirit is so sweet and happy that I know you’re not scarred.

In the last month, you’ve taken off. You’re walking. No…running. Your dada taught you how to walk backwards last weekend and so now you want to walk backwards all the time. It’s so cute. You’re still getting the hang of things – even four weeks later – and look like a drunken sailor just off the boat but you’re walking and that’s all that matters! You got your first two wounds – the first a bloody lip after chasing a ball and falling outside and then a very bruised cheek a day later after falling into the coffee table. You looked a little worse for the wear and I felt bad but you didn’t miss a beat. Few tears that cleared up after a couple of cuddles and kisses.

You haven’t gained many words but have a few new ones:

  • Aaah…ffff (off)
  • Boo (Blue)
  • Mo (Elmo)

Your imagination has sparked like a wildfire! You love to feed your little friends and take them for walks. You pretend they walk, bouncing them up and down with their feet barely touching the ground. It’s so cute. Your love of your stuffed animals is great (much like mine when I was your age). You’re just now starting to like dolls and it is sweet when you bring them over to me to nurse – just like you (still!) do!

One of your favorite things is to go to the park. You love being outside. Luckily, there are a few parks within our neighborhood and we can easily walk or drive to them all. You love sitting at the top of the slide and watching the kids play soccer and the adults do tai chi (you even imitate their arm movements). It is adorable. Your favorite activity is to play with the soccer ball. You think it’s hilarious to watch mama try to shoot a basket. You clap enthusiastically even when I miss (which is often!). We’ve started going to the park with your therapists to get out of the house. It’s working really well!

You have become quite the picky eater. Your favorite foods right now are:

  • Sweet potatoes
  • Trader Joe’s Italian style meatballs
  • Corn (preferably right off the cob)

And, not much else. We meet with a feeding therapist tomorrow to see what might be able to help get you eating more.

Your little body has been through so much with lots of testing the past couple of months. We’re still waiting to get back test results (get pre-authorized for genetic testing) but no matter what the results are you are loved!

Your sweet little voice calls out for mama every morning when you wake up. You snuggle and love on your Kangaroo until one of us comes to get you. You are very opinionated when it comes to the clothes and shoes that you wear. You don’t like to wear things that you’re not familiar with and get very upset when offered something new. You love your routine.

Your favorite song is Wheels on the Bus. We could sing it or watch it on YouTube for hours (if only, I let you!). You can sign it from start to finish. Your sign language skills are growing and you have a number of new signs:

  • Please
  • Thank you
  • Help
  • Water
  • Again

You’ve also gotten really cuddly. You run over to give me hugs and then take off to play again. You love to sit on my lap and read books. And, if you look up and see one of your friends close by, you’ll get up and bring them over too. Sometimes, we have three friends sitting in my lap while I read a book. Your favorites are Kangaroo (who you sleep with every nap and night), Elmo and Cookie Monster.

At two, you’re a budding artist. You love finger-painting and have also taken to painting with a brush. The other day in school, we put trucks in paint and ran them over paper. That was so fun! You could have done that for hours.

Mama is so proud of you! I can’t wait to see how you’ll develop in the next few months. I love your sweet face and adorable smile. Happy birthday, sweet girl!

I love you to the moon and back!
Mama

 

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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.

Speech Delays


We’ve been working with a speech therapist. It is a slow haul. I wish I could speed things up. She has been coming every other week but each week we have to start all over each time because Roo is so shy. The first 30 minutes is spent warming up and then we can get started but then it’s time to finish up. I got frustrated last week and asked her to come once a week in the beginning to help build a better rapport with Roo. She is open to it and needs to get approval. I’m hoping that it will get approved and helps.

Roo still has only a handful of spoken words at 23 months.

Mama
Dada
Blue – boo
Woof
Baa
Moo
Pa – for my dad but sounds like ba
Ma – for my mom
Yeah – for yes
No!!! – she’s got that down pat 🙂
Vroom
Wee – for cars/wheels
Wawa – for water
Ball – sounds like baa

She has more signs:
DownKangaroo
Cracker
Rabbit
Thank you
Please
Music
Different
Again
All Done
More
Food/Hungry – she uses the interchangeably
Wet
Car
Horn
Help
Fish
Bird
Duck
Milk
Hi/bye

She also has really good receptive cognition too, which is a relief.

We were recommended two books, which I really like:

The Big Book of Exclamations, which helps engage kiddos through storytelling

It Takes Two to Talk, which helps me as the parent to learn to slow down in my own speech to encourage her speech development – great for parents and caregivers (but is pricey – I borrowed it from the library before investing in it)

I’m hoping that she will start to speak more clearly soon! She’s definitely interested in “talking” more with babbling.

What books are you reading with your kiddos with speech delays or on your own to help them?