Caleigh's Corner

RISE Adaptive Sports

2013-05-16T23:59:00.000-05:00

This past weekend Caleigh went kayaking for the first time! We have been planning this day for over a month now. RISE Adaptive Sports is a local non-profit organization that provides inclusive adaptive recreational sports. Name the sport and they adapt it. Most of all, participating is completely free to families. This particular day was their Kickin' off Summer Bash IV; where we got to see and try out most of the sports that they offer.

The day was perfect. It was beautiful, but seriously windy. We started by checking out the petting zoo, kayaking, then took a boat ride. We then ended our day by talking to some of the vendors that were set up.

Caleigh was very excited about the whole thing. After all, we have been talking about it forever. Eric and I love to kayak. We've talked about taking Caleigh out on the water so many times, but we always chicken out. The how's and what if's were too many. Maybe the fear of "what if" was too much. With the reassurance of the volunteers we were set to go. Caleigh loved kayaking the most when I asked her. Probably because she was the most fresh and awake. The further we got through the day the more tired Caleigh was. She had missed her much needed nap and the wind was taking its toll.

The event was pretty large. There were a lot of people of all abilities that came. Young and old alike, it was a neat feeling of belonging. Although, I had several people, who are also wheelchair users, ask me if Caleigh has CP. I guess even in the wheelchair user community there are sub-categories that everyone needs to be put into. It was an interesting dynamic, and not really necessary at all. All within human curiosity I suppose. I think the only other time we've been around so many individuals, that use wheelchairs, was at the Abilities Expo. It was really nice actually.

Now that the opening of the season has started we will be able to take Caleigh weekly for whatever sport she wants. Kayaking is definitely on her list.

We talked to the power chair soccer person and plan on attending some of their practices. Maybe someone else giving Caleigh driving tips will be beneficial. Along with seeing other users in action, we will also be allowed to get in a chair and play with her. Something I can honestly say I haven't done.

We had a great family day and we were all properly exhausted when we got home. What an amazing organization for us to utilize. We can't thank them enough. This summer will be a great one for sure thanks to RISE Adaptive Sports.

My First Homeschool Convention

2013-05-10T23:30:00.000-05:00

This has been a challenging past week. We've updated Caleigh's Proloquo2Go with the 3.0 release. We are attempting a bit of a bootcamp with the new layout, and it has worn me out physically and emotionally.
More on this later....

I've also been having some health issues that decided to peak just in time for Burgers 4 Babies; causing me to miss the evening, and be in bed by 8:30 that night.

I had planned and registered to attend our local homeschool convention months ago, and so I got myself out of bed and trudged on this morning making my way to my first homeschool convention.

I guess technically this was a curriculum fair or book fair. There were speakers and a schedule of sessions so I'm going to consider it a convention.

As soon as I arrived, I headed to a session. It was encouraging, uplifting and I left an hour later feeling energized. I went straight to the next session. This one was interesting. It was one of those "how to run your household" talks. There was a lot of anti-feminist ideas. The woman's place is in the home....yadda yadda blah. This room was full of birkenstocks and long denim skirts, which happen to not be my thing. I should've known. The session was so full that I was sitting on the packed floor. No escape in sight, but I made the best of it with a little people watching.

Then there was a lunch break where I walked around the expo floor checking things out. I studiously made my way to a "should I homeschool my special needs child" session. I mean, it had the words "special needs" in the title. I had read the summary. It was me, right? I fit in here, right? Nope. No, I do not. I had ideas of exiting before the woman even started, but I didn't want to make a scene and there was still that idea that I belonged with the special needs parents. I ended up learning more about autism and learning challenges than I think I needed too. Plus it was a big advertisement for her business to allegedly "fix" kids. I was extremely annoyed, but I went back to the expo.

I had two things that I wanted to look into while I was there. For Caleigh, I use Sonlight curriculum mostly because it is a heavy literature based program. We supplement and withdraw so much that Sonlight is really only a fraction of what we are doing, but Caleigh and I both really do love most of their books.

We have been using Explode the Code phonics workbooks, Singapore 3B mathematics, and an endless supply of library books. We are also making our way through Harry Potter on a recreational level. Their bible curriculum is very extensive. I add and subtract from this area as well. The language arts that comes with Sonlight just isn't adaptable for Caleigh, and I'm glad that I found the Explode the Code series. These workbooks explain a concept and then I'm able to adapt them for the iPad. Right now, I think this is working. Caleigh is reading wonderfully, and I'm not worried about her progress.

Math.

I knew I would get to a level of uncomfortableness with mathematics. It's just what it is. So when the Singapore workbooks started diving into long division my brain shut down. No really, it did. So I put math curriculum on my list of things to look at.

After circling the floor, and asking a lot of questions, I have decided to switch to Teaching Textbooks. This curriculum has an online teaching component, and after playing with it for awhile; I believe that I will be able to adapt it fairly easy.

Science.

While we were just getting started in the homeschooling adventure two years ago, I decided that science could wait a bit. I think I'm ready to add something in. This is a tricky subject because of all the hands on experiments they typically have.

Science had a lot of choices. I went around twice looking and discussing the options with vendors. I think I have decided to try Sonlight's science curriculum. The chapters look friendly and the best part of the whole deal is an included DVD with all of the experiments done in a cute kid friendly way. I plan on also doing them physically with Caleigh.

The best part of choosing Caleigh's curriculum is that I can change it whenever I want to if it's not working. So far my choices have been pretty good.

I ended the day with another session. I sat down. The woman started ranting about the public school system. First of all, this is a homeschool fair. I'm going to go out on a limb here and assume that we (homeschoolers) aren't sitting there to learn about public school flaws. She was practically giving us a stern talking to. So I walked out. If I've learned one thing while being Caleigh's mom, it's not to waste our precious time. She was wasting mine and I couldn't stand to listen to her negativity for an hour. We all have our reasons for not sending our children to public or private school. Why re-hash the past?

I did one more quick entry into the expo, got tired, and then called it a day.

Even though the sessions didn't appeal to me, the fact that I was walking around a huge convention center with hundreds of other homeschoolers; made me feel less alone in my journey. The expo alone was worth it. I was able to flip through the books, talk to the vendors and find out that there is more out there than the few large companies that control the internet searches. It was all well worth it, and I plan on trying again with a little more wisdom the second time around.

A New Adaptive Swing

2013-05-08T21:26:00.000-05:00

Only a short drive from our house sits the most incredible swing set known to our family. This is big.

We got word late last week that there was a new swing, at a local park, that would work for Caleigh. We squeezed in a visit the other day and I'm so glad we did.

When we walked up there were two swings. One had 2-5 years on it, and the other, larger swing, had 5-12 years on it. They were both high off the ground, which made them a difficult target for random children to jump in and out of.

Never before in Caleigh's life, has she been able to securely swing so high and so carefree. She was able to sit upright with just a little bit of lean. She held her head in the middle wonderfully, and smiled a ton. Caleigh's typical positioning needs aren't ever this easy. This swing made that happen. The careful mom in me winced at the sight of her flying so high. My stomach did a somersault flip flop each time, I assume, Caleigh's did. Eric had a blast pushing her higher and higher. Most importantly, Caleigh had the best swinging session of her life.

Luckily, the swing had a brand name, PlayCore, on it. When we got home, we looked it up. PlayCore has sub companies, and one of those is a residential line of playground equipment. Swing and Slide is that company, and with amazing luck I was able to quickly locate the swing. At $369 + free shipping, believe it or not, it's actually a special needs bargain. Ironically, it is purchased and shipped through Home Depot.

Did you get through that purchasing maze? Home Depot is your spot and PlayCore is the brand.

Eric and I had been talking about getting Caleigh a swing set for her birthday. We've had this plan since around Christmas, but finding the right swing set that is usable for Caleigh has proved to be difficult. This swing, and Caleigh's sunshine filled face finalized that decision. It's on our want list for sure.

I'm on the hunt for a plain play set with three swing spots, and a small slide. I've got my eye on a platform swing as well. So having extra spots to put other swinging options would be ideal.

Oh how swing sets have changed since I was a kid. The small metal frame, jumping up and down with each powerful swing, doesn't really exist anymore. What I'm looking for is out there, I've just got to search a little harder.

I have 3 months to fulfill the birthday swing dream. We'll get there. In the mean time, I've got to work on keeping the secret from Caleigh.

Gray Family Garden - May Update

2013-05-06T23:59:00.000-05:00

{Radishes and Mixed Lettuce}

The past few weeks have produced a lot of lettuce and radishes for us. We are eating salads with almost every meal. We make homemade salad dressing and pile up the greens with tons of veggie goodness.

{Pole Beans and Swiss Chard}
Eric made a wire line that goes from the top of the house trim down to the garden boxes. The tomatoes and pole beans have already started climbing up the support.

{Eggplant}

{Zucchini and Yellow Squash}
The zucchini and squash plants are huge. We actually took some of the tiny veggies off the other day, and added them to our dinner salad.

{Strawberries}
I don't remember growing strawberries before, but I know we have. So I'm not sure what to expect from them. Their green leaves are large, pretty and there are several clusters of blooms.

{Lilac Pepper}

We just love the garden and taking care of it is part of our daily routine. We haven't gotten around to painting the boxes, but that doesn't change the produce that comes from the earth everyday.

Burgers 4 Babies - NICU Helping Hands

2013-05-05T23:59:00.000-05:00

It's that time of year again. Burgers 4 Babies in Fort Worth is just four days away. If you haven't bought your tickets, now is the time to jump on them!

Eric and I are proud to be on the host committee again this year. Last year's event was a wonderful evening. The food, drinks and company were amazing! Again the event is being held at the Woodshed Smokehouse, which is an open concept restaurant located right on the trinity river. It couldn't be a more beautiful setting.

Chef Tim Love, of Top Chef fame, is the event founder with deep roots to prematurity himself. Some of the featured chefs at this year's event will be coming in from all over the country. Dean Fearing, Ilan Hall, Davdi McMillan, Spike Mendelsohn, Jon Shook, Gabe Thompson, Katherine Thompson, Michael Thomson, Donatella Trotti, Jonathan Waxman and Sommelier Joe Campanale will all be fixing up a signature dish for the event.

NICU Helping Hands is a wonderful non-profit with the main focus being the support of NICU families before, during and after their NICU stay. I've been to several of the support meetings, sibling hours and educational hours provided and they are truly beneficial to the families. Eric and I didn't have this support nearly 6 years ago. Six and a half months in a NICU is no picinic, and I like to think we did a pretty good job of handling things, but I can only imagine how our day to day struggles might have been eased with the type of support that NICU Helping Hands gives their families.

Please take the time and check out the NICU Helping Hands website to see what they are up to. Through the same website you will be able to purchase individual tickets as well as sponsor a table (or three!) to this week's Burger's 4 Babies

We hope to see you there!

How to print your Instagram photos

2013-04-28T22:00:00.000-05:00

For two and a half years I've been snapping photos on my iPhone. When there is no more room on my phone, I occasionally move them over to my computer. Instagram came along and the keepers of my random shots ended up on the app. My photos lived on the interwebs, and haven't moved since.

My first thought was to make a template in photoshop, and pull the images in. Instagram doesn't make getting your images off of their app easy. So I would need to go through my computer stock pile and find them all. I quickly gave up on that thought.

So I Googled it. How to print your Instagram photos?

The first company that came up was FoxGram. I went with it. I started out slow, only ordering images from our vacation to North Carolina and Florida. 50 3x3 photos. 25 cents an image. Shipping is a flat .99 cents. What I loved was the ease of their website. It pulls in your Instagram photos. You check which ones you want and then your done. Very simple.

I ordered on a Saturday, and the photos came on Tuesday through the regular mail. There wasn't any special packaging.

The image quality was so so. Ok, not that great. The paper that was used is called Hiti. It's flimsy, thin and glossy. Some of the squares weren't cut evenly.

Basically, the quality wasn't what I had hoped for, but in the end my photos were in my hand, in print form.

I loved it.

Having them to look at was great. Caleigh and I talked all about our trip, and we reminisced the details for a long time. I got the bug to print more. So I went searching for another company.

I dabbled with Persnickity Prints but after a very confusing runaround with their website I quickly gave up.

The next company I found is called Social Print Studio. They print any type of image, but they have a sector of their company called Printstagram. $12 for 48 2.5x2.5 photos. Shipping is a flat $7.99. This comes out to .25 cents a print as well. They have other options. Calendars, larger prints, posters, stickers and they will be coming out with books soon.

I ordered on a Monday and my prints arrived on Thursday by FedEx. I wasn't home, and you have to sign for FedEx packages; so I actually didn't have the photos in my hands until Friday. I'm a sucker for adorable packaging and they did a good job in this area.

Each bundle of 48 photos was wrapped together. I went a little crazy and ordered almost all of the remaining photos on my Instagram account. Ok, a lot crazy. 480 little squares of goodness to be exact.

The print quality is considerably better than the FoxGram prints. The paper is a cardstock thickness. It feels nice in my hands. They have a matte finish and from what I understand they are printed with waterproof ink. The cuts are consistently square too. Their website interface wasn't the easiest to use, but it wasn't the worst either. I had to order each batch of 48 separately. Which means I had to go back to the beginning of the process eleven times. I'm told they are working on this. I like them and their customer service has been great as well.

I have a big project on my hands now. I'm not sure what I have planned for them yet. Maybe a scrapbook, photobook, or wall frame collage. From now on I think I'm going to make a point to print my images from Instagram every couple of months. Maybe a book next, who knows?

Disclosure: Discounts for printed materials were provided by Social Print Studio. The views and opinions expressed on this blog are purely my own. Any product claim, statistic, quote or other representation about a product or service should be verified with the manufacturer, provider or party in question.

Leckey Mygo Stander

2013-04-25T22:33:00.004-05:00

This last fall it came time to order Caleigh a new stander. The pink Leckey Squiggles stander was the first piece of adaptive equipment that we got for her back in 2009.

Here's an obligatory photo of our little girl in her stander oh so many years ago. I still want to pinch those chubby cheeks every single day.

The squiggles stander was always awesome for us. We never had any problems. We only had a few major growth spurt adjustments, but mostly I was able to do the daily adjustments that needed to happen. So when we went to order a larger size we went with the same company.

The Leckey Mygo Stander is the big brother of the Squiggles. Basically the same stander except rougher, tougher and a lot heavier. The straps are a little different, but generally easy peasy to adjust. The up and down mechanism is different. The Squiggles has a pumping type and the Mygo has a spring lever.

I went to put Caleigh in the stander this afternoon for a photo and the spring lever broke off. Hmm.... not happy. So while I'm waiting ages to get that fixed through our DME; here's another adorable photo of baby Caleigh in the Squiggles.....

The Mygo takes up more room. It's heavier to roll around the house and the tubing is a lot bigger. This will be Caleigh's stander as long as it's still functioning. The age range is 5-14. That's a long time and eventually a big kid. So all the beefing up of this version is for a reason.

Shhhhh....don't tell Caleigh, but I chose orange instead of green. I know, I know she loves the color green BUT I feel a little over greened lately. She loves the stander no matter the color anyways.

I would say 5 out of 7 days a week she is in the stander for over an hour. Sometimes more. We don't use the head rest anymore so they aren't pictured. In the photos, the Squiggles is in the tallest and biggest position and the Mygo is in the smallest position.
Eventually, we will be donating the well used pink stander. I'll have to wash all the pads. As you can tell I haven't gotten around to that.

The stander is one of the most useful pieces of equipment we have. The upright position and the tray are great. I'm not gonna lie it's a pain to put on AFOs, get her all strapped in, and then realize she needs to go potty or needs a diaper change. I'm pretty much a pro at this point though. Imagine pit stop crews...yeah, that's me.

Our big girl in her big girl stander. She was helping decorate scrapbook paper for me last week.

So there you go. If you have any stander questions feel free to ask away!

175ml

2013-04-21T23:59:00.000-05:00

This past Monday (4.15.13) Caleigh reached her goal of 175ml an hour on her feeds.

This. Is. Huge.

We've been working towards this goal for two years. Two years.

This means that Caleigh is no longer hooked up to her tube at night. She doesn't have to lay on it. How uncomfortable that must feel? She isn't woken up because of nonsense alarms. She doesn't wake up in the morning covered in formula because of a malfunctioning tube. When dinner is done she is unhooked. It's pure magic.

Her schedule goes a little something like this:

7am - Feed is turned on for two hours.

12:30pm - Feed is turned on for two hours.

5:00pm - Feed is turned on for two hours.

On to the next goal.

If my figures are correct it will take another two years at our current rate of increase, 2ml a week, to get there. Three, one hour long meals per day.

The current rate is set at 177ml as of this morning.

Knocking on wood and saying a little prayer that we get there.

Take that Short Bowel. Take that.

Lessons from an Octopus

2013-04-17T23:59:00.000-05:00

This time last week I was on a quest to make an amigurumi crochet animal for Caleigh. We sat down with her iPad, the Pinterest app and we began scrolling through all the choices. Name a yarn animal, and it exists. So when Caleigh picked out the Octopus I was pleased to find out that it wasn't too difficult of a pattern to complete. I ended up going with a variation of this pattern here.

I asked her what color she wanted her Octopus to be and not shockingly at all she wanted a green one. Caleigh continues her love with the color green.....

Once I started, I got pretty excited about how quick it was working up. I eventually realized that I was using a hook that was about 4 sizes too big. Oh well, maybe next time? I seriously finished Mr. Octopus in about 3 days. I was super stoked.

Caleigh loves him. She sleeps with. He has gone on car rides.
We named him Ollie the Octopus. His tentacles are the perfect size for Caleigh to grip and she does a great job of it.

Our days since Ollie's birth have consisted of YouTube Octopus videos, cephalopod talk and a trip to the library to wipe out all the non-fiction books on Octopuses.

The only thing left to do is show her a real octopus and now it's definitely on my list of stuff to show Caleigh.

Bye Bye Van

2013-04-16T23:59:00.000-05:00

On Monday, we dropped the van off to be converted to a short-cut rear entry ramp van. This decision has been years in the making. Eric and I have been researching, stalking ramp van owners in parking lots, and saving up dough.

Our new Honda Odyssey is amazing. We've had it four months now, and I really love it more and more each day. It had about 6800 miles on it when we dropped it off. To be able to take Caleigh's manual wheelchair with us, we have to lift the chair up into the back of the van. I do a little seat belt wrapping technique so that the chair doesn't fly if we have to stop, but I'm pretty sure it wouldn't work in a real emergency. We have been keeping the third row seats stored, and this makes it easier to fit the chair and also change Caleigh if we need to while we are out and about.

We spent the morning moving everything into our old van and really just trying to get organized. We took out the console and middle second row seat. Eric removed the third row seats, and they are currently resting in our garage. I'm not sure what on earth we will do with them, but it seemed a waste to have the conversion company just throw them out. We are told there is no market for them, but I may try Craigslist. Anybody have any ideas other than high class lawn chairs?

We decided on a short-cut rear entry. This means that the second row will not be touched. The ramp will be in the back only. We have strong feelings towards Caleigh staying in her car seat as long as possible. We love our comfy leather factory seats. The ability to recline those seats was a huge factor in keeping that second row. After years of back and forth on this decision, I am confident that we made the right one.

Our van will be on its way to Michigan in the next few days. We are told that it could take 4-5 weeks before we have it back. As a bit of a send off, Caleigh and I jammed out to her favorite tunes and turned the air up high and temp down low on the way to drop it off. We will all be very excited when we get our fancy van home.

First Swim of the Season

2013-04-15T23:55:00.000-05:00

Sunday was the first day that we heated the pool and jumped in to start Caleigh's swimming season. Our weather, here in North Texas, has been interesting to say the least. We would get one warmish day followed by a cold front and rain for several days. Finally there is a three or four day stretch of 80+ degree temps and no rain. We took advantage of the window. Later this week though we will have a repeat of that earlier pattern.

This time last year we had been swimming since the end of February. So this year is a big change. Even with Caleigh having to wait it out, she really was totally excited to get in the water. Maybe even more so.

Caleigh seems more brave in the water this year. She flips herself onto her belly and kicks her legs in a flash. She uses her tone to throw her head back attempting to dip her face in the water. Caleigh thinks this is funny and I'm not too keen on it. She also lazily lets the water take her around the pool without a move.

Today we swam again. I love that swimming can be apart of Caleigh's daily routine. How blessed we are for such an amazing gift. The realization still doesn't seem to sink in deep enough.

Let the swimming season begin!

New to Caleigh's Corner? Read more about Caleigh's Pool here.

Pigtails

2013-04-13T20:06:00.002-05:00

Curly Pigtails are Caleigh's new thing.

Friday, Caleigh got her second haircut ever. Just a trim of the ends. The fine baby hair is now gone. She has tons of new growth. When wet, her hair goes just below her shoulders. Although, her hair seems to still be growing up instead of down and relaxed, but I'll take growing over none.

Swing and Sway of Short Bowel

2013-04-10T13:10:00.002-05:00

This past weekend Caleigh had a stomach virus. The pattern is always the same and it happens every couple of months.

3 days of tight, over the top tone issues.
Followed by 3 days of vomiting and sleep disruption.
Add in 4 days of increasingly liquid stools.
Eventually there is 2 days of me worrying that something more is going on.
1 full day of waiting for the GI doctor to call me back.
We fill a prescription for bacterial overgrowth with plans to start it the next morning.
The next day Caleigh feels fine.
No meds needed.
Back to normal.

A wimpy 24 hr stomach bug takes a good 5 days to get out of her system.
That's just how it is.

Any resemblance of a stomach issue really causes my mind to hit the panic button though. We're trotting along just dealing with typical CP stuff and then BAM, oh yeah..... Caleigh has short bowel syndrome. Maybe just a reminder?

Once the bump in the road is over, and she recovers from whatever it was; then we go back to our normal. I'm extremely thankful for the ability to get back to our normal.

Gray Family Gardening

2013-04-07T20:00:00.000-05:00

Part of what we've been doing, since winter seems to finally be leaving, is gardening. It's something that Eric and I love to do. Growing your own food is super rewarding and it just tastes better than store bought.

Before Caleigh was born, at our old house, we had a huge conventional garden. It had an area for compost and rows of fresh goodies. It also had a lot of up keep. Did I mention it was huge? The weeds alone were work enough.

After Caleigh was born, and we spent two years in the hospital, the garden and all the hard work we had put into it was just a tall pile of weeds. We just let it go at that point.

So after three years in our new home we decided to give it a try again. This time we went with a smaller version. This particular type is called Square Foot Gardening. Basically you plant in boxes with a specific mixture of dirt. No weeds.

Our house is in an older neighborhood so sunlight is hard to come by. The large beautiful trees give our yard a lot of shade. The only area we had was by our driveway on the west side of our house.

So we cleaned out shrubs, vines and weeds. Bought the dirt combination and started mixing.

After the boxes were built and the dirt was spread out between them we took a few days off because winter decided to return.

Eric cut and installed the square foot grids for the top of the boxes. The only thing to do at that point was to shop for seeds and transplants.

We planned and then planted them out. We planted several different types of lettuce, radishes, tomotoes, pole beans, squash, zuccini, strawberries, tons of different pepper plants, eggplant, swiss chard, kohlrabi, okra, beets, carrots, and cucumbers.

Winter returned with two nights of freezing temperatures. Eric made sure everything was covered. We only lost the pole bean transplant to the freeze.

Water. Sun. H2O. Sunshine.

Voila! Tiny baby plants are starting to appear.

The garden project isn't quite done yet. We have plans to paint the reclaimed wood that the boxes were made of. We will also be building a vertical grid against the bricks so that the climbing plants have a place to go. There are also plans for a portable herb box that we can bring inside during the winter.

Caleigh has enjoyed the whole process of building and growing. We go outside to water the plants and check on how things are doing. I also have plans for us to paint and decorate vegetable marker sticks this coming week.

I think the size of our garden is perfect for our family. It's doable and there really is so much to learn from growing your own food.

Easter Weekend

2013-04-02T07:35:00.000-05:00

This year we skipped the annual beeping Easter egg hunt that the division for blind services puts on. It was cold, the wind was blowing and it was raining off and on. We basically hunkered down the entire weekend before Easter.

So this year we went to Mimi and Pop's church egg hunt. Caleigh enjoyed it and we couldn't beat the weather. The hunt was over in 12 seconds flat, but with a little help Caleigh got a good haul of 13 eggs and 2 stuffed animals. Eggs and candy she can't eat, but she still enjoys the process.

The next day we headed back out to Mimi and Pop's. We ate an Easter lunch and dyed eggs on the back porch. Thanks to Pinterest, I remembered to use a whisk to hold the eggs, and it really worked out great.

We got home semi-early and played with our real Easter bunny, Ferb, the rest of the night. I would say it was a successful Easter weekend.

How Social Media Changed My Blog

2013-03-28T14:51:00.004-05:00

The blogging phenomenon, to some, is dead. Weblogs started in the late 90's, and I can honestly say that I never read a blog with any conviction until we found out about Caleigh's birth defect back in 2007. Back then I had just finished up college where I spent most of my computer free time on MySpace, YouTube and Facebook. You remember back in the day when you had to have a college email to sign up for Facebook and really just your small group of real friends Poked you? Yeah, back then.

Not everyone on God's green Earth was on Facebook back when Caleigh was born, and for that reason I started this blog six years ago. My love for Facebook died several years ago although I keep the account because, really, Mark Zuckerberg has a hand in everything. You never know when he'll buy the whole internet and the only way to get on is to sign into Facebook. I'm just playing it safe.

I dabble in Twitter occasionally, but really only when I remember its there. Instagram came along in October 2010. I took my first photo on January 5, 2011. Back then I had a iPhone 3G and the camera was pretty terrible. I used the app steadily until I got the iPhone 5. The camera is pretty great and the editing apps are stylish. My iPhone photo obsession increased and my Instagram sharing has been bordering on ridiculous. Being a photographer, the visual platform of Instagram appeals to me on a huge level. I love it. There are even photographer's that are making a career out of traveling the world with their phone and a dream. Ahhhh, I wish. Anyone have a RV they want to loan me?

My iphone usage went up and my actual computer usage went down; until this past week when I had a waking up of sorts. I was outside playing with Caleigh. I was taking adorable photos with my phone. I was editing said photos. I was getting ready to post said photos and then it hit me. Sure I enjoyed that one moment, but the time I lost editing, loading, typing and having my face stuck to my little hand held screen made me miss the other moments with her. My missed moments had been multiplying with each notification on my phone over the past few months. Something had to stop.

Each ding of an email, each tweet pulls me away from being the best mom that I can be. So I began a weaning program of sorts. I started with just taking photos and then putting the phone down. There is no need to share right then and there. There is always the #latergram hashtag anyways, right? Then, in baby steps, I turned off the sound notifications on my phone. I don't miss them. As I am typing right now, my phone is somewhere in the kitchen and I haven't looked at it in hours. Pretty amazing really.

Let me tell you....
I'm so much better for it.

I sleep better. I'm a happier momma. I'm less tense. I could care less what Joe Shmo across the world is doing
at. this. very. minute.
Who cares?

I actually wanted to take photographs with my real camera again. We had a lovely time at the zoo without me checking my phone every few seconds. I focused on Caleigh and it was beautiful.

I believe that my love for my iPhone had changed many areas of my life. I think smartphones and devices have changed parenting in general. Especially with social media. All social interactions in general are extremely different. When we were at the zoo I was actually aware and looked around at everyone with their faces planted in their device. Walking like a drunk person because they were looking down at a phone. Ignoring their children's request because they were too busy. It was interesting to say the least....and a little sad. What on Earth will our children be like when they are our age? What are we teaching them?

I'm a true believer that you get back what you give. I have proof of that just in this short week. Caleigh has been doing amazing with her school work. She hasn't been whining and she's really focusing well. I attribute this to my regained attention to her. Why should she give me her undivided attention if I don't give her mine? She shouldn't.

I've posted on this blog three times this year and it's almost April. One of those times was this week so it doesn't really count. That's sad to me because we've done so much in these last few months worth noting. So in a reflective tone I would say that social media has changed my blog. I'm strongly leaning towards negatively, but it's a change nevertheless. Over the past six years I've seen blogs come and go. I'm hoping to regain my focus. Write what I want to write. Photograph what I want to photograph. Most importantly I want to keep this going. It's important to me. It's important for Caleigh.

Changing

2013-03-26T17:02:00.000-05:00

Changing

I know what I feel like;

I'd like to be you

And feel what you feel like

And do what you do.

I'd like to change places

For maybe a week

And look like your look-like

And speak as you speak

And think what you're thinking

And go where you go

And feel what you're feeling

And know what you know.

I wish we could do it;

What fun it would be

If I could try you out

And you could try me.

The Llama Who Had No Pajama

100 Favorite Poems

Mary Ann Hoberman

Two Months Later

2013-03-02T12:59:00.000-06:00

It's been awhile, huh? I haven't even opened this blog since the last time I posted.

Since I last wrote, Caleigh had an appointment with the orthopedic doctor. Her left hip is still in the same position, which is about 30 degrees out of the socket. We are still in a wait and see mode with her hip.

Caleigh had botox again. This time we did her right bicep, and a few other muscles in her right arm to try and make things more comfortable for her. We also did her hamstrings. We learned that if we don't do the quads at the same time then it's pointless. Caleigh's quads are compensating for the relaxed hamstrings and this makes her legs very hard to bend. Lesson learned. The good thing about botox this time was that Caleigh didn't experience the constipation that she has the past few times. She may be ready to handle a higher dose. There is only so much we can give her and many areas of muscle to address.

We spent several days at the stock show this year. Caleigh really enjoyed all of the animals and especially the bunnies. I'm sure we will make it a yearly thing.

We've been using our zoo membership and museum membership as well. It's always a good break from the mundane week. I've also been crocheting a lot in the evenings after Caleigh goes to bed. I finally finished her blanket. Caleigh's been sleeping with it every night since.

Our newest member, Ferb, is trucking along and fitting right into our family. Koko and Ferb are now friends....no worries there. So far we have taught him to return to his cage when we want/need him too. He'll eat out of my hand and lap, but he is still a little skittish sometimes. Caleigh is still in love with him.

Since Thanksgiving, I've been helping out with my Nana, who has been in and out of the hospital, nursing homes and rehab facilities. I've been keeping up with her bills and we just moved her out of her apartment. It's been a rough time and she's been very sick, but as of this week she is stable and settling into a new place.

Caleigh and I both have caught a head cold twice since I last wrote. Eric seems to have escaped it. We've been more free as far as our outings go this year. If we want to go, we do. Caleigh's respiratory system is finally strong enough to handle a little head cold.

We've made it through, and even with all of the distractions this new year has given us, we are still on track with Caleigh's home school. We are coming up on the tenth week and it's going well. Her phonics understanding is getting very strong. She surprises me everyday with something that she already knows. We are demolishing read aloud chapter books by the truckload. Caleigh and I even finished the first Harry Potter book last month. It was the first time I had ever read it and Caleigh really loved it. We will just keep moving forward. I really do love teaching my daughter.

On to Caleigh's feeds. She has continued to tolerate the rate increases. As of today she is at 164 ml an hour. She is hooked up to the pump and getting fed a little over 6 hours a day. Our huge goal was to get to 175 ml an hour.....it's not that far away. About two weeks. This would take out nighttime feeds. We are almost there! Two hours for breakfast, two hours for lunch and two hours for dinner. That's the goal. I haven't even really thought about the next feeding goal, maybe I should.

Ferb - The Lionhead Rabbit

2013-01-14T13:39:00.000-06:00

Caleigh has been a big fan of the cartoon Phineas and Ferb for awhile now. Luckily it's on Netflix. We are almost done with our 3rd viewing of all 99 episodes. It's serious. Fortunately, it's a pretty entertaining show, so I don't mind watching it every morning.

Which brings us to our new family member....Ferb.

Caleigh is all girl so when she needed to name her new baby bunny, who just happens to be a male, she went with the boy name she knows. I had no chance. I now realize that once you have kids, the names you would love to give an animal go right out the window. Especially when your non-verbal child spells out the name letter by letter.

Ferb is a lionhead rabbit. They are a fairly new breed that started in 1996. Basically a cross breed, and that is where the "lion" type mane came from. He was born in late October, which makes him almost 3 months old. He is full grown in size, about 3 lbs. He was handled from birth by the children and family that we bought him from last Wednesday.

Ferb is settling into his new home well. He is getting brave and venturing further and further from his cage everyday. We are still working on trust. I'm also working on training him. This morning I started training with spinach. He came over and ate from my hand. Rabbits are prey animals. So Ferb feels like he is always about to be scooped up by a hawk. We will have to work to ease his fears.

Did you know you could litter train a rabbit? I didn't until about a month ago. Ferb is almost completely litter trained. He picked it up quickly. Success also has to do with strategic water bottle and hay placement. The green box in the photo is his litter box.

Eric's family raised meat rabbits while he was growing up. I had two outside rabbits when I was little. Lucy and Ethel. Those where outside pets though. I had fish, hamsters, a guinea pig and hermit crabs that lived in my room while I was a child. So when I started researching small animals for Caleigh; I was surprised to find out that there is a huge house bunny community. House bunnies roam homes openly just like a dog or cat would. With the proper bunny proofing and care a rabbit can live to be 8-10 years old. Ferb's long hair requires more work too. I learned a lot about rabbits that I didn't already know. So with a little searching on breeds we went with Ferb.

This is called binky jumping. We think it's hilarious. He's loosening up and wanting to play. Caleigh's driving her powerchair in the background, which is the clicking you hear.

Koko is our 8 year old Boston Terrier. I didn't consider that aspect of bringing a rabbit into our home. I foolishly saw adorable photos online of dogs and bunnies lounging and napping together. You know, Terriers right? Bred to chase and kill small animals for sport. Yea that kind. That's what we have. Koko has been really sweet to Ferb considering the natural instincts. She is an strong sniffer and investigator and that scares Ferb. The other night Ferb took off running and Koko followed. We called Koko back and she stopped. Although, I will say that Ferb is definitely the faster individual here. Koko had no chance. As of this morning, Ferb has been moving in closer and closer to Koko. They are getting used to each other, but we won't be leaving them alone in a room together for quite awhile.

Caleigh is beyond thrilled. Her smile didn't quit for a full three days. Caleigh has had an entire weekend at home with Ferb while trying to recover from a yucky head cold. She says she already loves him.

December 2012 Recap

2012-12-31T23:30:00.000-06:00

I failed to post this before December was over, but I figure it's better late than never.

So December....

I'll start medically. Caleigh has been doing amazing. We only had a neurology follow-up this month. We decided to back down on the Artane for two days to see if, in fact, it was making a difference in Caleigh's Dystonia. Turns out, it is. Within those two days her full body "shudders" and teeth grinding got a lot worse. So we're back where we were before; four pills three times a day. We have also scheduled Botox for Caleigh's biceps this February.

Artane can cause constipation, which in Caleigh's short bowel case isn't such a bad thing. Part of our experiment with backing down the dose was to see if the Artane might have been causing her occasional constipation. We didn't really see any difference in those two days. Around Christmas day Caleigh became constipated and we had to give her two teeny doses of Miralax. Apparently, that was one too many teeny dose because the past few days hasn't been so great in the stool department. Also any tastes of food have resulted in increased stooling. Hopefully, she will return to her normal soon.

Other than those occasional ups and downs, Caleigh's short bowel is doing amazingly well. Shockingly even. As of today Caleigh's feeds are at 146ml an hour. She gets three, two hour long meals, a day and then about an hour and a half of night feeds. My guess is still around March for the banishment of night time feeds. I'm cautiously counting down the days.

I know I say it every year, but Caleigh was really excited and totally aware of the meaning and happenings of Christmas this year. She wrote a letter to Santa that was promptly mailed to the North Pole. We made homemade ornaments and gifts. We did crafts, coloring pages and read every book that the library offered on the subject of Christmas. We took Caleigh to the showing of The Polar Express at the Omni. We were fully involved this year and I loved it.

We went to the Parade of Lights with family and got to sit in front row seats. Caleigh loved it.

Christmas morning brought Caleigh all the baby doll accessories that she asked for. Baby doll stroller, Baby doll bed and Baby doll diapers. It was all about the accessories this year. Clothes, doctor's kit, baby wheelchair etc. Everything except feeding stuff. Who needs that when you have a tube anyways?

With Christmas day came a white Christmas in North Texas. This was our second white Christmas in Caleigh's lifetime already. We explained how special it was and then went outside to play at Mimi and Pop's house. The wind was blowing so much that the snow was incredibly dry. I'm no snow expert, but our attempt at a snowman pretty much failed. Caleigh was happy with it though.

The next day the temps were still low so the snow stuck around a little longer.

December also brought my birthday. I spent the day happily uneventful with my family. I can now call myself a year older.

Eric and I celebrated our 12th anniversary as well. We had a night out for dinner, shopping and a movie. We had a good time. Eric is a wonderful husband and daddy. I couldn't ask for anyone better. He understands me like no one can and he makes me laugh. In a parenting situation like ours, understanding is huge, but laughing through is even bigger. I love him.

Eric and I went to an ugly Christmas sweater party earlier in the month. It was a lot of fun and Eric's vest was a big hit.

That about sums up December. 2012 was really a great year. Onward and forward to 2013.....

Family Portraits

2012-12-02T14:22:00.000-06:00

Our good friend Kristin was kind enough to take family portraits for us this year. I realized we hadn't taken official family photos since 2010. I'm always behind the camera and computer, and in general, we are running the Caleigh show over here. They were most definitely needed.

The official Gray Christmas card photos are on this blog's new header design, and in a mailbox near you. These are the in-between, the outtakes, the real.

photo credit: Kristin E. Bazan

retouching: Holly D. Gray

Autumn, Van and the Tecla Shield

2012-11-11T12:47:00.000-06:00

This past week Fall actually arrived. The light was golden and beautiful. The leaves did their small amount of changing colors, that typically happens in Texas. The winds were strong and I'm guessing that the majority of the leaves are on the ground now. Needless to say we were outside a lot.

On Halloween, we purchased our forever van. As in, we will be driving it and loving it forever...van. Our plan is to send it up to Michigan sometime close to March to have it converted to a rear entry Vision van. By then we should have all of our financial ducks in a row. For two, maybe even three years we have been rolling this decision around. It's a big, expensive decision, and I think we have made the right choice for our family. Side entry vs. rear entry vans have their pros and cons. Trust me, I've heard and discussed them all. After a lot of list making we decided on the rear entry. I love all the fancy little perks that our new van came equipped with. Caleigh asks "to go in the car" every single day, and so far I oblige. It had 5 miles on it the day I test drove it. Today it has a little over 400. We might need to slow down on the going!

Caleigh is finishing up her preschool curriculum as I type. With the holidays just around the corner, I think we will take a bit of a break with several unit studies and a large chapter book. We'll pick up her new curriculum in January.

These days our house seems to be filled with Taylor Swift's Red album, on repeat constantly. I'm not gonna lie here, I don't mind it and it's way better than some of the kiddie music of our past. Caleigh has enjoyed a wide range of music in her life, but most of the time she wasn't too open to new music. I would have to squeeze a new song in here and there until it wasn't new anymore. Nowadays, she will listen to whatever is playing. Her music development is growing appropriately with her real age. This makes my ears and heart happy.

This past month I finally quit talking about getting Caleigh a switch interface for her iPad and actually made the move. I've researched the three that are currently available or in development. They each use the built in VoiceOver accessibility that Apple provides. We ended up buying the Tecla Shield for Caleigh. With the van purchase and other happenings we haven't been very consistent with practice, but the last 5 days she has had time using it with good success. We also purchased the Orby switches from Origin Instruments. The cost was about $700 total. VoiceOver has its own issues, but I've played with it enough that it is getting easier. Caleigh uses the interface with three switches. Forward, Reverse, and Select. The first time she used it, she understood exactly what to do. We haven't figured out how to take this setup out of the house with us easily yet. Overall I like it though. Will it be the end all for Caleigh? Probably not. VoiceOver is too quirky to make this an independent device for a five year old. Caleigh enjoys it though, so we will continue to practice the use of switches. We also plan on revisiting some of the more standard devices now that we have good switches in place.

In the video below Caleigh asks "to read" "Caleigh Can." This is a book I made for her August of last year.

October through Instagram

2012-11-03T21:22:00.000-05:00

If you follow me through instagram or Twitter these won't be anything new. Again, this month flew by.

We've had a hand full of swimming days with the warmer weather and Caleigh couldn't be happier, and sleep tons better, on those days.

Eric and I took Caleigh to a new speech therapy center for an evaluation. There was promise of motor skill evaluation, AAC assistance and reading programs. Long story short the evaluation team was convinced that Caleigh was blind, or "severally visually impaired." That put a damper on things. The fact that we know Caleigh can see well, in her own way, put a divide in our opinions. The evaluation didn't go much further from there. It's always good to keep an eye out for new things, but it's also nice to have therapists that believe in our daughter.

I got the new iPhone 5 this month. When I was cleaning off my old phone, this was the first photo I had ever taken on it from November 2010. I miss those sweet Caleigh biscuit arms and cheeks.

We went power chair driving at our local botanical garden. The sun was warm and the day was beautiful. So comforting in fact that Caleigh promptly fell asleep during her regularly scheduled nap time.

I ordered a switch access box for the iPad. It's called Tecla Shield and it essentially makes the iPad switch accessible through Apple's Voiceover. We are still practicing, but I'm seeing some good use of the system for Caleigh.

Caleigh was a My Little Pony for Halloween. Twilight Sparkle to be specific. She loves the show and has collected quite the haul of ponies. Despite the fact that the day revolves around candy, Halloween was a good night for Caleigh. She loved dressing up.

I melted crayons on a pumpkin, Pinterest style. This ended up not being a Caleigh project when the recommended hairdryer didn't work. The resolution was using Eric's propane torch to finish the job. Fire worked just fine.

Now we are off to enjoy November....

Botox

2012-10-14T15:03:00.000-05:00

Caleigh had her second round of botox this past week. Her first dose was in April. The first Botox injections worked right away and lasted a long time. Generally most kids get injections every 3-4 months, but Caleigh's legs still looked good up until just this last month.

This time we went with a nasal Versed as our silly juice of choice. It burned something terrible going in Caleigh's nose and she was very close to vomiting. I think next time we will opt for something different. We're trying to avoid unnecessary sugars in her system, but we definitely don't want the reaction that she had.

Again, the injections worked immediately for Caleigh. She got just one vial again. On paper she could get tons more. Caleigh was very constipated the first time so this was a signal that she was at the right dose. So far, no constipation this time around. Caleigh has experienced some soreness and has complained on being uncomfortable since Thursday. As of today though, she says that her muscles feel better.

10-11-12 before Botox 10-14-12 after Botox

Botox is pretty amazing stuff despite the side effects. I can only imagine the relief it must give her legs. Fingers crossed that this set of 6 injections will last another 6-7 months.

Chihuly and Caleigh

2012-10-12T19:05:00.000-05:00

In an effort to add some much needed art to our lives, Caleigh and I made an impromptu trip to see the Chihuly exhibit in Dallas this past week. The weather was foggy and comfortable. This was perfect for our girl who hates to open her eyes in the bright sun. Caleigh enjoyed our little field trip almost as much as I did.