Weekend Links 6/14/13

Life
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!

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.

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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

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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. 

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! 

Weekend Links 6/7/13

Life
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!

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!)

Weekend Links 5/31/13

Life
There's Power In Your Story - in(courage)
Worst End of School Year Mom Ever - Jen Hatmaker
The World Lies Upward - Enjoying The Small Things
What I want you to know: parents of special needs kids are not saints - Rage Against The Minivan

That's all for this week. We've been busy, which leaves little time for internet surfing in our house. Oh, and a very very happy 30th birthday to my friends Amanda and Allison! Hope you girls enjoy your day!

Happy weekend, y'all!!

2013 goals, May roundup

Y'all. . .  I was doing so well with my 2013 goals and then May happened. We have had A LOT going on this month, and the next thing I know the calendar reads May 29th. . .  and so there ya go. While yes, I technically have two more days to get cracking, it's just not going to happen people. So without further ado, here's my sad attempt at my 2013 goals, for the month of May.

Recipes:
I only made two new recipes this month. And they were not main entree recipes, mind you, they were bread recipes. Now, both were amazing and delicious, but since man cannot live on bread alone, I will need to get back at it next month. That said, if you need some good amazing bread to go with your meals, check these out. They will not disappoint!

French Bread Rolls - My friend, Emily, made these for our play group and they were so good I knew we had to make them at home. I think her batch was better than mine, but nonetheless these were still yummy and center nice and doughy (but not undercooked).

and

The Perfect Loaf of Bread - We ate the first loaf in two days, if that says anything about how it turned out. Then we made another loaf, and another, and both only lasted two days. Seriously. It's addicting. So much so, that I promptly froze the loaf of Mrs. Baird's that was on our counter. So long store bought bread. It was nice knowing you.

Scripture memory:

Psalm 38:15 "I wait for you, O Lord; you will answer, O Lord my God."

Exodus 14:14 "The Lord will fight for you; you need only to be still."

Seems as though many of the verses I select have an overlapping theme of waiting, and being still. Not always easy for me, thus why I need these reminders on the forefront of my mind. Wait. Chill out. Be still. Don't freak out when God hasn't answered in some earthly timeframe that I concocted in my head. He will answer. He will fight for me. But I must do my part. I must be still.

Reading:
I did not read anything this month. The. End.

Computer clean up:
What do ya know? I actually cleaned up my computer a little this month. I looked through the 5,739 downloads and sorted a bunch, organized a bunch, and deleted a bunch. I love deleting things. It's the Type A in me.

And just because. . . here is a picture of Clara in her super girly tutu outfit that my mom bought her before she was born. She actually bought one for Clara, and two other baby girls, Lucy and Ruby, that were born just a few months before Clara. So we met at the park last week to take their picture. Their older buddy, Jake, was there too, so of course he had to get in on the last pic. Such cuties!

Bye!

Happy Memorial Day!

We've had a nice weekend thus far, and are excited to continue the fun today on Memorial Day. Thankful for the long weekend, and that Brandon is home with us, but even more thankful for the freedoms we are able to enjoy, and for those who risk their lives to fight for these freedoms.

Today will be spent doing lots of this. . .

This girl LOVES being in the water. 

And maybe some of this. . .

Been going on lots of walks lately. Sunglasses stay on approximately 2.5 seconds. 

She looks so thrilled, right?

And, if time allows, maybe some of this. . .

Yes, we shop at the Dollar Tree. Big spenders right here. 

Happy Memorial Day! 

Weekend Links 5/24/13. . . and apparently playing "patty cake" makes my child cry

So. . . remember how I took that unplanned blogging break last week? Well, I just haven't felt like writing much this week either, it seems. Not sure why? Maybe it's just a phase. Not too worried about it. Clara and I have been busy and having lots of fun, so that is what is important, right? Oh, and she woke up Tuesday night about 9pm crying (so not like her) and the second we went in we knew why. The girl was congested and couldn't breathe, and then proceeded to cough so hard that she threw up. She slept a total of 4.5 hours that night (upright, in our arms, b/c she would scream cry very intensely if we laid her down) and thus took a stellar 3.5 hour nap for me on Wednesday. Poor kid. This has happened several times and we never see it coming. She goes to bed just fine, and then wakes up a few hours later with a nose full of snot and struggling to breathe well. And then I take her to the Dr. to find out it is just another cold??? These are some serious colds if you ask me!

Sorry for that rant. . .

Anyway, I have still been reading and browsing blogs during some of my spare moments, so here is this Friday's weekend links. Maybe catch ya'll next week. . . if something interesting (or not) strikes me! Enjoy the holiday weekend, everyone!

Life
The Middle Parts - Enjoying The Small Things
It's Ok to Not Be Ok - (in)courage
Where you water it - Simple Mom
Living in fear - True Worth

Eating Disorder and/or Self Esteem
How to be the mom in the mirror you want reflected in your daughters life - Lisa Jo Baker
fears of weight gain - Surviving Anorexia
Understanding and helping the siblings of eating disorder patients - Dr. Ravin's blog

Food/and or Recipes
Grilled lemon chicken with sweet corn & tomatoes - Iowa Girl Eats
The best spinach artichoke dip ever - The Pioneer Woman
Peanut butter cup crack brownies  - Cookies & Cups

Clara's 1st birthday party

I took a little (unplanned) break from blogging last week. We had Clara's birthday party on the 11th, then friends in town until the 14th, and then two big medical appointment for Clara that consumed the rest of the week! And then when you're living life all in between, there is no time left for the computer. And. . . that is ok. :)

Here's a recap of Clara's 1st birthday party. I'll let the pics do the talking! A big thanks to my sister Susan, mother in law, Debbie, and friend Aja for taking so many cute pics. I have SO many more, but there was no way I could post them all! (And sorry. . . didn't have time to organize them and post in a nice little order. You know this is killing the OCD in me. But. . . I'm working on letting it go, Ha!)