Angels on Earth

I have known for a while now that there would come a time I would have to/need to write this post. I didn't know exactly what it would say or how I would feel. And I didn't know what the "answer" would be. But I did know...

When Ava was born, we thought she was perfect- and still do! She was 7 lbs of pure joy and love. A "wiggle worm" from the start, we didn't worry too much (as her doctors didn't either) when her first missed milestone happened- sitting up. I was only slightly concerned, but chalked it up to her just being a busy little baby. And eventually she got it. What a joyful day that was for me. That would be the last big milestone that she would hit within the typical "window" of development.

By her 12 month checkup, I had grown very concerned about her delays. But the doctor (not our regular one) basically blew me off. But at her 15 month checkup, the pediatrician (more on that later...) *finally* agreed that YES, we needed to address her global delays (global delays are developmental delays in two or more areas. In Ava's case, speech, fine motor, gross motor, and developmental) and sent us for therapy evaluations. We had the evals done and found that she was very behind in every area and would require 6-7 hours of therapy a week. Not what a parent wants to hear. But it was okay. Most kids with global delays grow out of them and are "typical" children by the time they reach 3 or 4, provided they get early intervention. So we would have a few rough years, but we would get there. Or so I thought.
But something was still bugging me. She didn't have ANY of the risk factors for global delays. I didn't drink when I was pregnant, I had good nutrition and took prenatels everyday. Something just didn't feel right to me. I think as a mother, sometimes the Lord gives you the ability to "just know" something about your child. And I just KNEW. So we went back to the doctor. This time, we saw our doctor on record, Dr. Thompson. We had chosen him out of the clinic doctors because, of all things, he is a pilot. HA! It is amazing to me how the Lord puts people in your life before you understand the full gravity of their impact on your life. We had been "floating" around to the other pediatricians so that I would know who I like and who I don't, and because Ava just wasn't sick often, we used our well checkups to do so. So it had been probably 6 or more months since Dr. Thompson had seen her. Well come to find out, Dr. Thompson has a reputation among therapists as being one of the BEST about taking delays seriously, looking into the causes, ordering tests and conferring with specialists. And he did not disappoint! He immediately ordered a string of tests including urine and blood work ups, an EEG, and MRI, a swallow study, and he got us in to see a developmental pediatrician.

I should note at this point that everything that has happened, has happened in the last two months. And it has been an earth shaking, life altering two months. Full of fear, stress, heartache, sleepless nights, and lots of praying!

So we had our developmental pediatrician visit this past week. And she told us that she thought Ava might have a genetic syndrome called VCFS. It is the most common of all genetic syndromes and although it can make you horribly sick, Ava seemed to have a mild case and would likely just have learning issues, but that she would grow to live a normal, productive life. Ok. That is fine. I could deal with that. But there were still things that bothered me. The spitting up, for one. It still happens, at 20 months, and it just had to be related! What are the chances of a child having a semi-rare genetic disorder AND major reflux issues. And even with a mild form, she didn't seem to "fit" the typical VCFS case. I think I still knew it wasn't right...
And I was right. Yesterday around lunch, I got the call that flipped our entire world on it's head. I wasn't expecting it, honestly. But it happened. Dr. Burns called. Her genetic testing was back. The chromosome that causes VCFS was fine. But another wasn't. The 15th. A problem with the 15th Chromosome is called ANGELMAN SYNDROME. Angelman syndrome is extremely rare, only occurring in appx 1 in 30,000 live births. We are still not sure what form of Angelman Ava has because more testing and a harder look at her 15th chromosome is needed. And that will kind of help us determine the severity of her case. It is a spectrum disorder like autism, but there are some commonalities among all "Angels" like my sweet Ava.

The hardest thing, to this mommy's heart, is to accept the fact that she will never live outside of an unsupported environment. She will always need assistance. The equally as difficult thing to hear is that she will be mostly nonverbal. Angelman individuals usually only have a vocabulary of between 1-20 words and communicate with a mixture of words, sign language, and communication devices, depending on their intellectual capacity. There is a component of mental retardation, but some less severe Angelman individuals show evidence of high intelligence. The saying is "I may not speak, but I have much to say." The other worrisome thing is the seizure component to the syndrome. She hasn't started yet, but 80-90% of Angels do have some degree of seizures and because her EEG and MRI showed slight, yet nonspecific, abnormalities, we do expect them to occur. They usually start between the ages of 2-4.

As difficult as this might be to believe, Angelman isn't the worse diagnosis to hear. Don't get me wrong, it isn't the best. There are so many hopes and dreams that I have been having to let go of for my baby girl...it is gut wrenching mourning the loss of the future you thought your child had, that you wanted for them. But in the midst of that heartbreaking sadness, I am reminded of the LORDs faithfulness and love. And what a pure example of Christlike love that Angels like Ava are!

All Angels share certain characteristics regardless of their severity. And to me, the most striking characteristic, and usually the one that strangers notice first, is their overtly happy nature and love for people. That is actually part of the syndrome!!! Of all of the genetic issues that we could have had (and there are hundreds out there!), our daughter has the one that makes her happy!!! As sad as I am, I rejoice in knowing that my baby will never understand great sadness or depression or worry. You have heard the expression "it's not in her nature."? Well it really isn't in Ava's nature to feel any of those things! It is programmed into her genetic code to be happy!

When I read about Angelman Syndrome, I was astounded. It was truly as if someone had sat down with Ava and just written a syndrome based on what they observed of her! Had I known about Angelman before, I could have told them that it was what she had!

I made a list for her therapists about Angelman characteristics that Ava has, since it is a rare syndrome and they likely know nothing about it at this point.

Angel Ava:

• Hyperactivity
• Spitting up/severe reflux
• Aggressive appetite
• Frequent and inappropriate laughter and giggles
• Overtly happy demeanor
• Overtly social behavior
• Heat intolerance
• Extreme temp changes in extremities
• High pain tolerance
• Use of feet for play and manipulation
• Love of water
• Love of dogs
• Excellent visual memory
• Depth perception issues
• Global delays
• Excited “moan” or “grunt”
• Some textile intolerance (mostly hair bows and shoes)
• Oral sensory issues/mouthing of objects
• Hair pulling
• Extremely fast grabs for food, hair, glasses, etc.

We have many challenges ahead. And prayers are greatly needed and appreciated. I am sure there will be times that our Faith is what gets us through the day, and times where our Faith is tested and pushed to the edge. But a life with Angelman is also a life with a great joy and lots of laughter. And for that I am thankful. I remember a few months ago, our pastor said that "the Bible doesn't say that life is going to be good and easy. It says that the LORD will work everything for the good of those that love Him and are called to His purpose." I don't know why the Lord chose us to be Ava's parents, but I am so glad He did. She is just a joy and a precious addition to this earth. And the amazing thing about Angelman is that, regardless of her intellectual ability, she will always retain that childlike joy and purity that she has now! I know great blessings are going to come out of this diagnosis. In my true spirit of planning, I am already thinking of ways to raise awareness and money for the cause.

And there is always HOPE! A doctor in Florida has been able to actually reverse the syndrome in mice!!!! That is AMAZINGLY exciting!!! And the foundation recently won a grant that will allow the doctor to go into clinical trials for the process. He believes that the same process can also help people with autism and Alzheimer's!!!

I would also like to mention that, although we do not yet know for sure the severity of Ava's case, it does seem to us (her family and therapists) to be somewhat mild. Many Angels do not sit up until after their 1st birthday, but she was! And she seems to have very high visual memory skills (she squeals with delight when we turn onto our street! and knows exactly where the water in our house is and how to make it happen- if she gets away from me, I know that she is in our bathroom turning on the bathtub water!). She also is close to walking and cruses well for an angel, while most angels who do walk don't do so until 4 or 5. So I am hopeful in that, too.

If you would like to learn more about Angelman Syndrome, you can visit www.angelman.org. Right now, the foundation doesn't have a chapter in Arkansas, but that is probably going to change if I have anything to do with it! ;)

I would like to also thank you all for your words of encouragement, support, and love. Please understand that this has been a lot for our family to digest and process in a very short period of time, and there are many more challenging days ahead. I would be happy to answer questions...eventually. But right now I just can't. Either because it is too difficult emotionally or because I simply do not know. I hope you understand and we appreciate the continued love and support. And of course, PRAYERS!!!

Master Bedroom Mini-Redo: NEED YOUR HELP!

Okay friends. I haven't really touched my bedroom since we moved in around the first of July. Okay, that isn't the total truth. I did hang the art. And arrange the furniture. And I did hang some brown curtain panels that I had (which I never even took a picture of because apparently I was THAT embarrassed by them.) The panels themselves were not bad, and definitely better than the "Gone With the Wind" treatments that were there previously (see below picture for proof). However, they were not long enough and really accentuated the fact that our bedroom windows are kind of, well....squatty. 

Anywhooooo, so I decided to jump on the drop cloth for curtains bandwagon that has been going through the blogosphere, and went off to Home Depot (because they are rumored to have the BEST drop cloth for curtains around- even better than my beloved, Lowes). I came home with four 6x9 drop cloths curtain panels. As instructed, I washed, partially dried, and then ironed them. I hung them from cheap curtain rods and clips, also from the home depot. And I really like them (I need to add more rings to the panels on the right window. Pretend that they look like the left ones, okay?! Thaaanks.) 

 So I like them. I do. I really do! But do you see my problem? I am sure you do, my dear bloggies. They are exactly the same just a little too close in color to the wall. Yup. Sad day in the Brewer house. I think paint is required....

 But my question is: WHAT SHOULD I PAINT??? I mean, I could paint the curtains. Or I could paint the wall as an accent wall. Or I could paint the whole room (which would be a huge pain in the rear and probably cause a stink with the hubs).

 And if I do paint the wall as an accent wall, do I paint the tray part of the tray ceiling (that is the current wall color?) Or leave it be?

Whatever I decide to paint,  I think I am going to paint it the same color as that rust colored pillow on my bed. Which you cannot really see because I am sure my camera is on the wrong setting as I am a horrid photographer. But I love that color!
And yes, if you read Thrifty Decor Chick's blog, you know I straight up copied her bedding. Which is from Target. To be fair, I totally could have found that bedding on my own at Target whilst wondering around as I do so often! I didn't. But I could have!!! ;)

So anyway- VOTE, leave your comments, but I need your HELP!!!!!

  

Catching Up, October Style

Hola! Happy October! Okay, so it is almost mid-October. Little late! Sorry! :)

I have been cleaning, hanging new curtains (more to come in a later post- PROMISE!) and generally doing nothing today...and I LOVE IT! Ava has been sick with a double ear infection for the past week, and is finally on the mend, so that has been nice.

Just wanted to share some updates with you on our house and Halloween decor...

These are my "pumpkins... on a stick" (if you watch Jeff Dunham you might get that!)

I got the idea from Pinterest, and adapted it as I usually do with Pinterest ideas. I used a stencil from HobLob for the letters. Stenciling onto pumpkins is harder than you might think- FYI.

Here is my entry table. You might remember it from the before & after post I did about it. I just love getting to decorate it for each season!

What I didn't share was this chair I found at a junk store for $3. I painted it and recovered it with some fabulous fabric called "Love Letters" that I ordered online. I painted it the same color as the dresser, but I am not loving it with the fabric. I just ordered some Annie Sloan Chalk Paint in their new color, Coco, so I might repaint it that color. I don't know, I will just have to see what the color looks like.

These are my knockoff PB ghosts. You can see their version here. They want $45 for theirs (ON SALE)...mine are hanging in the yard after $20 and 20 minutes. :)

This is my neighbor across the street. I snuck this picture going back inside after taking the ghost family's picture. THIS is what I have to compete with people! HA! I love them and they have a beautiful yard anyway. And their house has oodles of curb appeal. But it just looks AWESOME with the mums and pumpkins! I can't wait to see what it looks like at Christmas!!!

Oh, I painted my door! It was an awful reddish purple color. But now it is Iron Mountain by Benjamin Moore. Happy happy, joy joy!

And we got new living room furniture! YAY! Ours was mine in college, and before that it was my parents. So it was about time for something new. I am not sure about this arrangement. There are definite pros and cons. But I am loving the pieces! Now after we get our granite, that will be the end of our major purchases for a while!!! Granite is coming hopefully within the next month! YAY! I am thinking about either recovering the storage ottoman or bringing back the old black coffee table and painting it with my AS Chalk Paint Coco paint. We will see. And the set came with about 10 throw pillows, but they are U-G-L-Y, so I am going to recover those too!

This is a chair that I snagged from my sister's garage sale pile. She has these around her dining table, and this was an extra. It is primed to paint red, but I think I am going to paint it with my AS Coco paint too. :)

And last, but not least, I *finally* got a station clock! I have been wanting one forever, but we never had a good place for one. Now we do, so we trotted to HobLob this past week and picked one up for 50% off! I just love it, and it is practical too! You can see the time from the living room area and the kitchen area! Lovely!

Well, I think I am caught up. Except sharing about the new curtains. But I am not ready for that project reveal just yet...but I promise to share when I am done! I will give you a hint- the new curtains are in the Master BR. :)

Happy Fall Y'all!!!

Well, Fall officially started today! And I am STOKED! I love Fall. The crisp morning air, the leaves beginning their slow change, pumpkins and mums adorning front porches! It.is.AWESOME!

Earlier this week, I started decorating the front of our house for Fall. This is our first fall here, so I was just feeling out where I wanted things to go.

This was a Pinterest project. I have a metal pumpkin in the attic that I was going to use, but I couldn't bear to paint it. This one was $15 at garden ridge, and was a little sad looking by itself. So I added the dots and the name. :) Note: Corrugated metal is NOT your friend on such projects! That is why the name is a little screwy! Oh well! I might paint it orange and begin again next year! ;)

What I had so far. We just got these new carriage lights hung. LOVE THEM! I am still really stuck on a door color. But I am just about tired of thinking about it, so I think I might just paint it black (or maybe use Anne Sloan Chalk Paint in Graphite) and see what happens. It's only paint, right?!

That space to the left there is where I want to put a bench. I will have to work on that so that I can add some adorable "trick or treat" outdoor pillows I found on Pinterest. Which reminds me, I need to find some outdoor pillows on sale! HA !

Using my canvas again this year. Not gonna lie, I am thinking about adding the big white polkadots to the outside purple border. Thoughts? If you can't tell, I am loving polkadots right now! :)

Speaking of polkadots- this was another Pinterest idea. The blog that the picture linked to wasn't actually about the girl's dotted planters, but I fell in love! I just dig how they bring a touch of whimsy and fun to an otherwise very traditional front entryway.

I bought the planters for 50% off at Garden Ridge, and painted the dots on when I got home. Like, AS SOON AS I got home!

The ghost and candycorn stakes are also from garden ridge.

$4 each. Yes, please!

They had pumpkins, too.

(excuse the dirt patch. we have a drainage issue that I am addressing now)

The mums are all from Lowes. Good prices and pretty mums! I have them placed so that the sprinkler will hit them each morning. Hope this keeps them alive! Ha! The red pot is just a terracotta pot from Walmart that I spray painted red.

Happy Fall!!!

Project: Dresser

div>So things have been a bit, um, stressful here at the Brewer house! We are having some issues with Ava that I don't really want to get into, but I would ask that you just keep us in your prayers as we try to figure out what is going on and how best to handle what we find.

So because of all of the happening, I haven't really updated. Sorry. But I have a fun project to share that will hopefully make up for it! Most of my friends know that when I get stressed, I tend to decorate as a means of coping with sed stress. Well this has been my stress relief for the month...

I found this handsome guy on Craigslist a few weeks ago. The lady that had it "upcycles" furniture, and had already done work on it. I loved the shape and size, but the style wasn't what I wanted. BUT, it is an antique (circa 1917 according to my research) and I knew I could make it what I wanted. Not to mention, I had been DYING to use some Annie Sloan Chalk Paint and this was the perfect excuse!

I bought the dresser for my foyer. The foyer has 12' ceilings, and our little sofa table that was in the entry way was too short and too long and just not right in there. So I knew when we moved in I wanted something different.

And the result?

Pardon my photography skills! HA! I wish I could blame the camera, but it really is just me.

Another angle...

The paint is Annie Sloan Duck Egg blue chalk paint (which is a nice paint to work with, but I don't think it is as grand as everyone seems to think...not for 35$ a quart anyway). I stripped the top to reveal beautiful walnut and then stained it dark (it only took a couple of coats of stain & poly mix from Minwax to get that color. The wood is a beautiful dark walnut- how could anyone paint that?!?!) I then *painstakingly* painted the keyholes with oil rubbed bronze paint to make them stand out, and replaced the hardware. I had to fill in the holes on the bottom two drawers and re drill holes for the pulls. Not an easy task because my handy plastic hardware templates don't work with those pulls! Ah!

But he is done and proudly standing in my foyer. I just love it and honestly, I am really proud of myself for taking the time and doing it. I am usually not great with projects that take a lot of time, but this one paid off I think!

DIY Curtains and Large Purchases

Sorry I have been an absentee blogger lately. Things just seem to keep getting busy. Mostly because of Pinterest and my desire for large and time consuming projects. :)

We have made a lot of large purchases lately. And by large, I mean several hundred dollars for one item. New house, new tires, and this big bad boy... :)

So new, I haven't even thrown the box out yet (that is it sitting on the deck there...). I always wanted one as a kid, but they didn't have those cool nets back then and my parents would never cave. So I finally talked Cole into getting one, despite his trying to convince me that it would make our yard look trashy! HA! Don't know where he got that! Ava loves it! She always loves to play on her cousins so I knew she would. It will be a few years before she is allowed to really jump, but for now she loves to sit and bounce. :)

In other news, Pinterest is the devil and takes up ALL of my free time. Seriously, I love it though. So fun! I had been agonizing over window treatments for the living room for a while (really since we first saw the house) but when I saw these http://pinterest.com/pin/166617269/, I knew I had to have them! Problem was that the picture links to a blog (and not just to post, ugh) and when I did dig through and find the post, she didn't say where she got them! plus, I really wanted tan and black. So then I found this pin http://pinterest.com/pin/165927178/, and she did a whole tutorial on how to paint curtains! So I found some curtains at JC Penny (on sale AND I had a coupon) for $20 a PAIR, in a great burlap color. And I dug out some black latex paint from the garage, some painters tape (I used the blue with "edge lock technology) and got to work!

Here is the results...

I LOVE them!!! So happy with the results!!!

I was worried about the curtain blocking the built-in, and it does a little, But not as badly as I thought.

If you are wondering, yes, they are a little stiff where the paint is, but not too bad. The tutorial says they will loosen up. If they are still really stiff in a few weeks when the paint has cured some, I am planning on steaming them VERY carefully to see if that might help. Might do a test piece first to make sure I am not going to mess them up.

This was my Gummy's chair. Gummy was my mom's mom, and she was so called because she always carried Juicy Fruit in her purse. My sister started it, and it stuck. :) She was all about fixing up furniture. This chair was wood (don't have a great before) and is the only thing I have from her. I fought with myself about painting it for a LONG time. It isn't a great quality piece, just special. My mom voted no, but my sister made a good point- Gummy would have wanted me to LOVE it, and she always re did pieces, so I should make it into something I love as an homage to her. And I did! Still living with the purple. I tried lime and it was too much (and was going to take 100 cans of spray paint to finish). I like the purple. Might go with a light blue though. Who knows. :) It is a work in progress! I got extra fabric of that print to make throw pillows with. Love my new edgy living room look. It is a work in progress.

And lastly, a question: Has anyone ever used Annie Sloan Chalk Paint? It is pretty pricey, but I just got a piece I want to paint with it. My question is, is the price worth it? All of the retailers say it is, but I am hesitant. It would have to be FREAKING AWESOME paint to be worth 35$ a quart!!!

Helicopters and Windows

I have been a bad blogger. Sorry. I have just been super busy the last week or two. And honestly I am not quiet sure what all I have gotten accomplished? Don't ya just hate that?!!? At least I know what I have accomplished today! Which actually has been a lot, including reorganizing my pantry (and drat! I forgot to take before & after pics! Sorry!).

My hubs, Cole, as most of my loyal readers know, is a military and commercial helicopter pilot. For the last six weeks, we have been in pseudo deployment mode while he was in Louisiana learning to fly these big boys....


That, my friends, is an Sikorsky S-92 helicopter. They are very fancy and VERY large. In fact, only some of the oil rig platforms that he flies to can even accommodate them. They hold 19 passengers and 2 pilots. That is a BIG helicopter! I am so proud of my husband! During the training, he was also able to obtain his helicopter ATP Certification (airline transport pilot). Most people know about private and commercial pilots licenses. An ATP is an add-on to a commercial pilots license. It means that you have gone through enough school and have enough real world experience (flight hours) to pass a written and oral exam & check-ride. Basically, Cole now knows all there is to know about flying a helicopter, according to the FAA. I already knew that... they should have just asked me! :)

He is finally home and we are getting back to our "normal" schedule. Which is not normal to anyone who doesn't work in the gulf. But it is our normal two week on, two week off schedule.

Back on the home front-literally!- I am struggling with what to do about window treatments in the living room. They are bare, and need...something. I just don't know what.

I thought about regular ole' curtains or valances, but I have a problem if I do that....

See that space? Right there between the window and the bookcase??? Well that space is only about 8" wide. Too narrow for a curtain or valance to hang and look normal. Especially considering the other side (above) has a much larger area. I just think it would be too close to the bookcase and close off those shelves.

What to do, what to do?!?!?! The only solution I have come up with is to do plantation shutters. These are usually so beautiful in and of themselves that they don't need any other type of dressing (in my opinion). But OH MY WORD have you priced them?!?! And can I even do them on the french doors? I guess I could do them on the windows and do curtains on the sides of the doors. But is that too much going on? Anyone have any advice or opinions??? HELP! I have been searching my new obsession (aka Pinterest) for idea, and so far nada!