Thursday, June 27, 2013

Currently. . . June 2013 edition

Haven't done one of these in a while. . . so, here ya go!

Loving: Clara's curly hair! Y'all, I absolutely love it but it is out of control. Now that the top is getting longer I have no idea how to help the poor girl out. How do I make 1 year old crazy hair look cute, and not like she just rolled out of bed?

Reading: The Circle Maker. I just started the book a few days ago and it is really making me think about the power of prayer, and how to pray in a new way. The book "draws insight from the true legend of Honi the circle maker, a first century Jewish sage whose bold prayer ended a drought and saved a generation." The idea is God honors bold prayers and bold prayers honor God. Really good food for thought here.

Watching: Honestly, not watching too much of anything these days. September 26 cannot come soon enough because then I get a weekly date with Parenthood. Why doesn't this show just run all year long? Does anyone want to have a Parenthood premiere party with me? :)

Listening to: A mix of stuff these days. I am in desperate need of new music on my I Tunes. Please pass on some recommendations. My playlists are getting a little old.

Thinking about: Starting a part time job in a few weeks!! More to come on this, but it is pretty much the ideal situation. A part time (19 hr a week), work from home (maybe 1 day a week in office, but not all day), position working in the field I love. . . adoption! I'm very excited that this opportunity presented itself, and will allow me to keep my social work foot in the door, while also working from home in order to spend time with Clara and keep up with all of her appointments.

Looking forward to: GIRLS WEEKEND. This Friday - Sunday I will be away with six college girlfriends. Cannot. Wait. I love my little family, obviously, but it will be so nice to get away for three days of uninterrupted girl time, sans any type of childcare responsibilities! Brandon has lots of fun planned with Clara, so I highly doubt they will even miss me!

Making me happy: Spending lots of time outside, swimming, with my girl. Houston is HOT and therefore we probably go swimming at least every other day. If not for the pool we would probably stay locked up inside the house the entire summer.

Repeat pic, but I haven't taken any new ones lately.

Have a great day! Almost the weekend!!!!!

Monday, June 24, 2013

Clara's EEG

No, we don't have any results just yet. We have a follow up appointment in August where results will be discussed. Clara did GREAT last week. She fussed while the nurse was glueing the little stickers on her head (25 of them!) but once that was done and her head wrapped (to keep her from pulling the stickers & wires off) she ROCKED IT. Sweet girl sat in my lap for 1.5 hours while we watched a movie (Ok I watched it, she watched 5 minutes and then could have cared less) & played with toys. So proud of her!! Thanks for all your sweet texts, comments and prayers! We feel so supported and loved!

And no, I'm not sleeping, although it looks like it :)

Friday, June 21, 2013

Weekend Links 6/21/13

Please Don't Let Me Disappear - (in)courage
What we moms can do for each other - Lisa Jo Baker
Pushing Past Mad - Lysa TerKeurst

ED and/or Self Esteem
So you're feeling too fat to be photographed - Teresa Photography
I may not be the "est" but I am the "only" - Inspired To Action
Is Being Me Enough? - True Worth

Food and/or Recipes 
Peanut Soba Noodle Bowls - Eat, Live, Run (I would prob sub chicken for the tofu and leave out the cilantro but yum!)
Thai Peanut Chicken - All Recipes
Reese's Pieces Soft Peanut Butter Cookies - Averie Cooks

Have a great day! 

Thursday, June 20, 2013

Clara 13 months

Let's just not stop to think about how Clara is probably closer to 14 months now than 13, ok? I don't know what is going on with me these days, but I'm falling out of my groove (in many things, not just blogging) and just can't quite seem to get myself back on track. Thus why this post is three weeks late. Anyways, that aside, here is our precious girl at 13 months.

Taking a bath
Swimming or basically just playing in water
Turning the pages of her books
Playing with herself in the mirror
Her Vtech discovery book (Thanks Matt & Jenna!!)
Anything musical
Going after our iPhones or iPad

Does Not Love:
Diaper changes
When we wipe her face after a meal
When we try to wipe snot or a booger from her nose (cue complete meltdown)
Loud noises
Sun in her eyes
Eating food with texture
Drinking from a sippy cup
Anyone touching her hands

Eating: Three meals a day, plus three bottles a day of a toddler formula. I would not classify her as a picky eater, as she will go for anything I put on her tray (repeatedly), the issue is her actually swallowing the textured food (working on this in OT). She will put it in her mouth, move it around, and even chew it up a bit, and then spit it out. We also incorporate a sippy cup with each meal, although she is not able to use it on her own. If any of you mommas out there have/had a child with major texture issues, please feel free to pass along any advice/tips my way!

Sleeping: We are officially on the transition from two to one nap, although not quite there yet. Some days she takes two, some days one. Every day is a guessing game, folks. It's like she is not quite tired enough to get in two good naps (she can go easily 4 hrs between naps and 5 hrs between last nap and bedtime), but sometimes one nap is a stretch to get her to bedtime without a complete meltdown. She goes to bed at 8pm and sleeps well, yet her morning wake times keep us on our toes. Seriously. . . I am starting to thinking mommas who say there baby or toddler sleeps until x time EVERY SINGLE DAY are just liars. Clara easily has a three hour wake time span, which as you can imagine, makes the whole nap time transition issue really fun. FUN STANGE! :) Ha! I'm trying to roll with it.

Schedule at 13 months:
Ummmmmmmm schedule? What's that? Please refer to section above.

Development: I recently wrote an update on her development here.

She is SO SO SO close to crawling, y'all. She did four real crawls on Monday, but hasn't since. That said, she is still pretty mobile and loves moving around on the floor and you can tell she is trying SO HARD to make her legs and arms work together.

Eight teeth (Maybe nine, can't quite tell, but I think another broke through on the bottom).

Laughing more! Which is pretty much the best thing in the entire world!

Mimicking more!

A few other things at 13 months:
Size 12 month clothes
Size 2 shoe
Size 3 diapers, size 4 overnights

Adventures: We spent a few days on Lake Travis at the end of May, and we have another trip with friends coming up over Labor Day. We are super busy with our weekly routine so nothing really big is planned for this summer. We have celebrated a few birthday parties of close friends and here are some pics from the birthday fun.

Clara's friend, Aedan, was trying to push her around in the little car. So sweet!

Sweet Jake, the birthday boy!

Me and my BFF Wendi. I am not quite sure why my face is looking a little distorted here. Oh, and thanks Landon for the photo bomb.

A few random pics over the last month:

Please note foot placement in the picture above.

I'm convinced she is signing "I Love You." :)

 Pool time!
Baby yoga?

Love those baby blues

Think that about sums up the last month! Oh, and if you think about it today, please keep Clara in your thoughts and prayers. She has her EEG this morning. Not sure how long it will take to get the results. Thanks, friends!

Friday, June 14, 2013

Weekend Links 6/14/13

What it Looks Like to Have a Cyber Sabbath - (in)courage
What I want you to know about talking with your infertile friend - Rage Against The Minivan
Surviving Summer - Jen Hatmaker (Did y'all see her on the Today show earlier this week???)
When your temper scares you - some suggestions for defusing - Lisa Jo Baker

ED and/or Self Esteem
Genetic Research - Surviving Anorexia
Mixing it up - The role of food concoctions in ED's - ED Bites
Doubting Decisions - True Worth

No recipes this week!

Happy weekend, and Happy Father's Day to all the dads out there!

Wednesday, June 12, 2013

Update on Clara's development: where things stand at 13 months

Some of you have been asking how Clara is doing, developing, and if there are any recent discoveries in terms of testing, appointments or possible diagnosis.

I will try to keep it brief and refrain from explaining every little thing, so any big words or disorders I did not link to, just google if you are interested.


In this letter I wrote to Clara back in February, I mentioned that we would be meeting with the Genetics Department at Texas Children's Hospital.

We met with them in May and the following sums up our appointment. . .

  • The geneticists ARE NOT concerned with Clara's chromosome abnormality (The Microarray genetics test showed she's missing part of her Chromosome 4). They noted that the portion she is missing is very small, and not linked to any specific disorder or cause of concern (at least not yet, not enough research). They are running the Microarray test again, just to make sure they get the same results twice, but at this time, the chromosome abnormality isn't the biggest area of concern. So that was encouraging news! 
  • The geneticists ARE concerned with the following: 
    • Clara's head size - said it's not growing in proportion to her height/weight (which we already knew based on her Microcephaly diagnosis)
    • Developmental delays - both motor delays and social/verbal/language delays
    • Dysmorphic facial features - specifically, they mentioned her unibrow, sunken eyes, ear shape and small chin. They mentioned that the dysmorphia can be subtle, so someone not trained in genetics could/would easily overlook said features.
    • Repetitive shaking of head
    • Repetitive flapping of hands
    • Other odd behaviors like her sensitivity to certain sounds, lights, etc. 
  • They also want to run a whole genome sequencing genetics test. This is a much more extensive test than the Microarray and would 1-hopefully give us more solid answers (in terms of a diagnosis) and 2- tell us what percentage any future children will have the same delays/diagnosis (if a diagnosis is given based on test results). Blood work will be run on all three of us, and test results take about 5 months (talk about torture).
  • They also referred us to a well known Autism clinic in Houston to have her evaluated for Autism, or spectrum disorder such as Aspergers, PDD-NOS, etc. The wait list is like 500 miles long, so she will most likely be 18 months before we get an appointment (which would be a much more appropriate age for an Autism diagnosis should one be given).

I think that about sums it up with the geneticists. 

Clara had her eyes reexamined by a really cool NeuoSensory Eye Clinic and the Dr. confirmed that yes she is nearsighted, but also saw some concern with the way Clara tracks objects. I had not really picked up on this prior to the Dr. pointing it out, but Clara moves her entire head when she tracks, instead of only moving her eyes. The Dr. said that this is an important skill that also plays a part of the 12-18 month development. She gave us an exercise to help her correct this, but let's just say one of us holding her head still with our hands while the other moves an object around the room is not really her fav. activity of all time. We have a follow up in August. 

Here's the really cool part. . . 

Neither her therapist or neurologist think it's Autism! Woohoo!! Her therapist thinks ALL of Clara's issues are directly related to a Sensory Processing Disorder (tactile hypersensitivity). Y'all - last week her therapist was explaining sensory stuff to me and how it is all related to Clara's delays/odd behaviors etc etc etc and it really does make some sense!! I honestly think she's on to something. Plus, she is the one that sees Clara ALL the time and therefore I do trust her judgement over a geneticist who only saw Clara one day for two hours max. So, we are doing a lot of sensory work in OT, and I can say within one week of only doing sensory work, Clara has made huge strides in crawling. She's not quite there, but getting sooooooooo close.

Clara has started this odd twitch thing (usually while eating, but sometimes while playing) and so the neurologist wants to do an EEG just to make sure she is not having seizures. He's fairly certain she's not having seizures, but just wants to cross it off the list since the twitch came on strongly over the last month or so. She has also started gagging/coughing during meals (sometimes directly after the twitch) so we are meeting with a pulmonary Dr. (same office as neurologist) just to make sure she's not aspirating. He said sometimes this can be an issue with kids that had reflux as infants. 

Here's a recap for those of you going "Ummmmmm that was anything but brief, and I actually think I'm more confused." 

Waiting on insurance to approve the whole genome sequencing (Seriously, it takes FOREVER), then we go for blood work. Wait 5 months for results. Try not to go bonkers during said 5 months. 

Getting on wait list for the Autism eval, but most likely cancel appt. as it gets closer, since neurologist and therapist both strongly disagree with the geneticists referral for Autism eval. 

OT 2x a week

Speech therapy 1x a week

ECI 1x a week

EEG and pulmonary Dr. consult later this month

Follow up w/ Neurosensory Eye Dr. in August

Follow ups with the neurologist every 3 months

Practice, practice, practice all her therapy work at home

Pray, pray, and pray some more
So. . . That's it! Clear as mud? Thank you so much for all the texts, emails and prayers on behalf of our little girl! We know God has a great plan for her and we are excited to watch Him work as she grows and develops. 

Monday, June 10, 2013

Clara falling asleep in her highchair

I took this video a while back, and completely forgot to post it here. Totally cracks me up! I am sure many others of you have a similar video you could share. :)

In other news, I hope to soon post (this week? no promises!) Clara's 13 month info, as well as an update to the information described in the letter I wrote to Clara back in February. No life altering updates to report, but nonetheless, I feel there is some info that is worth documenting. 

Have a great Monday! 

Friday, June 7, 2013

Weekend Links 6/7/13

A Monday morning check list - Lisa Jo Baker
When trying my best doesn't work - (in)courage
We Don't Have To Understand - (in)courage
From You, I Learn: A Year of Growth - Enjoying The Small Things

ED and/or Self Esteem
How to help/support a friend - Surviving Anorexia
UnFilling the Cracks - True Worth
Through a door sideways: Body size distortion in anorexia - ED Bites

Food and/or Recipes
Lemon Blueberry Muffin Bread - Eat Live Run
Caprese Chicken Nachos with Marinated Tomatoes - Iowa Girl Eats
Good For You Fries - The Salty Kitchen
Chocolate Waffles with Peanut Butter Sauce - Buns In My Oven

Have a great weekend!

Tuesday, June 4, 2013

Weekend on Lake Travis

We spent last Wednesday - Sunday in Spicewood, Texas, on a mini vacation with Brandon's parents. It was wonderful, relaxing and nice to just get out of town for a few days. There is something about getting out of town that just clears your head, no?

Do y'all remember back in February of 2012, when I was pregnant with Clara, and Brandon surprised me with a getaway anniversary + babymoon weekend? Well, we went to the same lake house for this trip and once again, it did not disappoint! I was a little more mobile this time around (Remember last year I had cankles the size of Texas itself. You're welcome for not reposting reminder pics) but with the grandparents there, I was still able to relax quite a bit. We watched Clara swim, played ping pong and ladder ball, ate at several yummy restaurants and got cupcakes at the Austin famous "Hey Cupcake," and visited a local winery. Oh and found a gigantic lizard in the garage. I only heard about the lizard second hand, and was not the one to find it, so lucky for me and unlucky for you, I have no crazy dramatic traumatic lizard experiences to report.

Here are some pics to sum up our trip. . .

(We were so sad that Brandon's bro, wife and kids were not able to join us!)

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