Caleigh's Corner

Insta Friday

2013-06-14T00:00:00.000-05:00

Caleigh has been swimming every single day. At least for an hour if not two. It's wonderfully amazing.

For the past month or so, Caleigh has been going through cycles of not sleeping well at all and then times where she is exhausted. As I type, she's in an exhausted period. I know she has grown some during this time. Her shoe size has gone up and she seems taller. Her muscles are all tight and she seems frustrated with it most of the day. Hopefully, things will calm down soon.

Caleigh is doing so well with school lately. It helps fill the gaps in our day between swimming and therapy. Even though most kids are out for summer now, we are going to continue on. It's a good pace and Caleigh asks to do more than I usually plan each day.

We've been going to the library at least once a month if not twice. With all of the school related reading we go through our stack of library books slower than we used too. As soon as read through them though, Caleigh is asking to go to the library again.

Before our trip to Austin and San Antonio we bought a new child carrier at REI. We've been looking at these for a couple of years and I regret not buying one sooner. Most of the time Caleigh's head lays on Eric's shoulders but ever so often she will pick it up really well. We took Caleigh on a three and a half mile hike the other day. It's only the second time she's been "off road" hiking. She did great. Eric deserves some major kudos here because I can't carry Caleigh in the backpack. It's just too heavy for me. He says he is getting a good workout and I believe him!

Ferb is still a fully functional member of our family. We gave him a bath the other night and deep down he is really just a very hairy rodent. He's reaching bunny adolescence and becoming a bit of a pill though.

I signed up for a homeschool group through Meetup. They do several things a week and take field trips often. I was pretty pumped about it. Through the group I found out that our local library was doing a story time at the municipal airport with a little tour added on. I signed up, but was put on a wait list. The night before the event I got a call that a spot opened up. With no time to talk it up to Caleigh we jumped in the car early the next morning. I talked to her the whole way there. Five minutes in the story and Caleigh flipped out. She caused a scene and had every little girl her age giving her the ugliest looks I've ever seen. The women from the group that I was supposed to meet there never came up to introduce themselves. I didn't know what they looked like, but they knew Caleigh uses a wheelchair. I was pretty heartbroken with the whole thing. After talking to Caleigh when we left she said "because I can" "I don't like it." So I grounded her from her music the rest of the day. It was our first official grounding. Timeouts seem a little young for Caleigh at this point. It worked. By the end of the day she told me "I love you" I'm sorry" "I want to listen to music." She got the idea. The next day she was an angel. What set her off, I will never know. Having a non-verbal child can be so hard sometimes. So incredibly hard.

With that little story, I leave you with more swimming photos. Here's to better sleep, relaxed muscles and the end to frustration for our girl.

Our Rear-Entry, Short Cut, Wheelchair Van

2013-06-12T23:59:00.000-05:00

We got our van back! Last Friday we signed all the papers and drove our new ramp van home.

We sent Caleigh's van off on April 15th. The modification took a little over six weeks to complete. During this process we drove our old van around. It wasn't too hard, but I must admit that I missed my shiny new van a lot. Caleigh was pretty angry about it and had a rough week of adjustment. She kept telling me that she was "mad."

Back in April I wrote:

"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."

Without a doubt, now that we have our van back, we believe that this is still 100% true.

This conversion allows us to keep our second row. With a rear entry van they have to move around the "guts" of the van that are underneath the ramp area. So the second row was moved out, but replaced the way it was. New carpet was laid throughout as well. Right now we have the middle seat out of the second row, but it's easy to pop in when we have extra passengers. There is also a third row, fold down, bench seat option that we decided against. We just don't need that much seating. If it wasn't for Caleigh's wheelchairs, I would still be driving my tiny Corolla.
Ah, Rolla.... I miss you and your gas mileage...

We decided on a completely manual ramp. Since our rear hatch is motorized, this isn't a big deal. I pull the handle and set the ramp on the ground. It takes seconds. Eric and I didn't want anything that could break further down the line. An extra motor and something electrical adds to the risk. I'm much faster pulling the ramp down than the motorized one would be anyways. In rain, heat and cold this matters. Plus it was just more expensive to have that option.

We are already talking about putting down some sort of carpet covering in the ramp area. Just in the past few days it has really picked up dirt. Maybe linoleum or one of those office chair mats? I'm not sure who thought carpet would be a good idea, but I guess it gives the flow of the conversion more consistency visually.

As of right now, we are using the ratchet straps that came with the modification. In a couple of weeks we will be getting an EZ-Lock system mounted on the van and Caleigh's power chair. We will be able to roll the chair in and a mount will lock onto the chair automatically. We will still use the straps for her manual chair.

Even though we are pretty certain that Caleigh will be in her carseat for the foreseeable future, we do plan on letting her ride in her power chair from time to time. On the way home from the grocery store and quick trips down the road come to mind. Just because the ramp doesn't go all the way to the front seats doesn't mean that she can't use it in the same way. There are extra straps involved for this setup. They resemble a lap and shoulder belt.

The van is raised slightly in the back to accommodate the lowered floor. I think it looks fine. The exhaust was moved, and unlike the VMI brand conversion that I drove, there isn't a loud muffler sound. Imagine a V8 truck with pipes. Our conversion doesn't sound any different than it did before. Thank goodness.

So here's the deal. Not one person told us about the short-cut rear entry van. The sales people want you to buy a side entry van with all the bells and whistles. If you show interest in the rear entry van they only discuss the long cut. I found the short cut on my own. I even called the company and they tried to talk me out of it. The cost is the same between the two rear entries. They repeatedly told me that Caleigh would be "too far back" for me to get to her. Um, if I'm driving I can't get to her anyways. In reality, she's not that far away than she is in her car seat. We did not see one photo of this conversion before we hit the go button. I was told that they rarely do the short cut. Well, I'm here to tell everyone that I love it and now the internet has some photos of a rear-cut entry van that it didn't have before.

It takes our van to the next level for our family. It's what is best for us and that is what ultimately matters. My back feels better already and travel just became SO much easier!

We want to thank Caleigh's Grammie and Grampa and Mimi and Pop for all of their help making this van a reality. Love y'all bunches!

Urban Baby Bonnets - Our Brown Eyed Girl

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

Ever since the day we brought Caleigh home from the NICU, her eyes have been extremely light sensitive. I have tiny sunglasses that she wore before she even had a prescription. I had a drawer full of teeny hats. At the time I thought it was the seizure medication she was on, but after several years of being off seizure meds; nothing has changed.

My eyes are also very sensitive. I can't wear my glasses outside the house during the day. I have to wear contacts and sunglasses always. I've heard this is a blue eyed thing, but I'm not sure.

Caleigh's new(ish) glasses have transitions lenses. I had high hopes that they would give her the darkness that she needs, but it just doesn't seem to be enough. They don't change in the car and they just aren't quick enough when getting out of the van. As soon as the sun hits her face, she throws her body back. We do have plans to tint the van's windows extremely dark to help her with this.

Now that we are doing more and more outdoor activities, I've been on the hunt for a good hat that will block the sun. I bought a sun hat from Target that has a wide brim. We took it kayaking with us and every time Caleigh leaned back onto a headrest or my chest the hat would fall off because of the brim. It was a battle to keep on. Chalk that up to the one-billionth purchase that just didn't work.

So when I saw these Urban Baby Bonnets filling up my Instagram feed; I knew that it would work. The flat back of a bonnet mixed with a super wide front brim and a strap for the chin that keeps the hat secure; made it a shoe in. It took me forever to pick a pattern on these reversible hats, but I eventually went with the organic Forest print. I wanted something that wasn't too babyish and I think this one fits the bill.

They have measurements on the website with size suggestions. I measured Caleigh's head and ordered a 6-12 month size. Measuring Caleigh's head is one of my least favorite activities. With all that curly hair it's easy to forget that Caleigh has microcephaly, or a smaller than average head size. It just brings up yucky neurologist memories during those early years.

I had the bonnet by the end of that week. It's perfect. We've used it in her wheelchair, the pool and on the hammock. It will be perfect for kayaking. We plan on using it on our morning walk tomorrow too. Caleigh says that she likes it. The bonnet has helped with some of that startle reflex that a burst of sun to the face will cause. Overall, it's a win in our purchase department and a win with our sensitive brown eyed girl.

Memorial Day at Morgan's Wonderland

2013-05-28T23:49:00.000-05:00

This past weekend we took Caleigh down to Austin and San Antonio for a very short road trip. We stayed with friends on Sunday, where we ate some amazing food and stayed up way to late visiting. Caleigh didn't nap so by 6 o'clock she fell asleep on my shoulder. After an hour long snooze session she was ready to go. She finally went to bed around 11:30, which hasn't happened in as long as I can remember.

The next morning we all met for breakfast and then headed down to Morgan's Wonderland in San Antonio. Caleigh has been over the moon ecstatic about this trip. If you remember we took Caleigh to Morgan's Wonderland around this time last year. Looking back on that post, I can't believe how big my girl has grown! Last year was such a huge success that we had to do it again. This has to be Caleigh's favorite place on Earth right now. It's her Disney. It's her island get away. She loves Morgan's Wonderland with all her heart.

As soon as we got there she wanted to go on the carousal. She rode it three times before we made her get off to do something else. The carousal is her absolute favorite ride at the whole park.

We did some swinging next. She liked this version that goes in any direction. In all honesty though, they don't have the amazing new swing that we just discovered by our house. We could only swing her so high without getting nervous. So it wasn't amazing, but it did the trick.

We took a stroll over to their pier and Caleigh did the fastest "fishing" I've ever seen. {the fish was already on the hook} Her face in this photo pretty much sums up her feelings on the matter. We were out of there and waiting to catch the train in no time flat.

We rode the train next and by that point Caleigh was tired, hungry and way too hot. Morgan's has an air conditioned building with a lot of different rooms and stations. I think it is called the Sensory Village. Here's a little secret in case you ever visit..... The coldest spot in the whole park is in the air conditioned, no window projector room. The entire room is lined with sound absorbing carpet. There are even carpet panels hanging from the ceiling. Walking into this room was extremely calming. Am I the only mom that thinks she has sensory issues after being overly aware of their child's? Yeah, that's me, I loved this room.

All of the walls have an interactive projection screen with varying stuff playing on them. The one in the photo above is butterflies that land on your shadow when your being still. Very cool. We stayed in this gem of a find for over an hour. Eric got all of Caleigh's afternoon meds and formula hooked up, while she laid on my shoulder cooling off.

After we had all recovered from the heat, we made a quick stop in the green screen room. Eric and Caleigh gave the weather report and waved to me. She's pretty much a natural.

They have the coolest xylophone area. Caleigh loves hitting them, but at the same time she anticipates and winces every single time. Her startle reflex really kicks in with the anticipation.

Three more rounds on the carousal....

After we called it quits on the carousal, we took Caleigh to the restroom. She did really well with using the potty at the park. By that time it was clear that whatever second wind she may have gotten with lunch and that cool down was over. She was tired and cranky. I was attempting to convenience her that it was time to go home when she broke down crying. I finally got out of her (thanks to Proloquo2Go and the iPad) that she wanted to do the wheelchair swing. This was the one thing that we hadn't done that she really wanted to do.

As we agreed to her request she quickly dried it up. So like any good parents we sucked it up and headed towards the swings. Eric found an attendant to help, and we loaded her on the wheelchair swing. Eric pushed our yawning girl, and I photographed the evidence while cheering her on.

Until she passed out....

So we called it a day and headed out of the park, where a very sweet lady insisted on taking our family photo. This is me holding up the head of our, in and out of sleep daughter....

Then we left. For Memorial Day weekend the drive home wasn't bad. Caleigh made it into her bed by 8:30 that night. It was a whirlwind two days, but very doable. Eric and I both agreed that we would need to start at Morgan's Wonderland much earlier in the day next time. If Caleigh has anything to do with it, we will definitely be back to visit sooner rather than later.

That Sweet Head of Hers

2013-05-23T23:59:00.000-05:00

Caleigh's head positioning is something that I think about daily. This is something that we have been working on from the beginning. I've posted about it here on several occasions. Caleigh's head is usually down and leaning to the left.

It's visual, it's sensory related, it's a learned habit and she doesn't do it all the time. It is what it is.

Just in the last 6-8 months Caleigh has really started to mouth things. Her progress with all of her equipment slowed to a stand still due to her licking and chewing. She would just hang out and chew. Her day would be complete and she could care less about anything else except that sensory input. Sure, she could hold her head up nice and straight, but why would she if she can get that wonderful sensation from mouthing what's right below her?

We've talked about it with her. She says "feels nice," "good" and "I feel happy."

Why would I want to take away what makes her feel happy?

All of her equipment has a chest harness, and that is what she chews and licks on because it's easier than making her arms and hands cooperate. My major concern with this came when her habit of mouthing things carried itself to our van. I drive around praying we don't get in a wreck because her head is almost constantly down chewing and licking the harness in front of her. When her favorite songs come on the radio she perks up and sits up straight. I feel like the head lift DJ everywhere we go; trying to find the perfect song that makes her hold her head up. It worries me. So when this all started happening I began ordering neck collars to support her head while we are in the van.

We ordered and returned several rejects before finding one that would work with her car seat, and allow her head to be safely back against the head rest at the same time.

This neck ring is made by Danmar and it's called a swirl collar. The listing talks about allowing the user to still be able to move which was a bonus in our case. Caleigh moves a lot and she likes to be able to lean her head to the side. I called and talked to the company about the product just to make sure it would possibly work. They were extremely helpful, and even offered a custom neck collar if the standard, off the shelf version, didn't work out.

I can't tell everyone enough how much I just love this collar. It took a little bit for Caleigh to get used to wearing it. The collar basically sits on her chin, sternum and collar bones. The area at her neck doesn't have any material touching it. It's soft, and easy to clean. Caleigh can still hold her head down and turn from side to side. Eventually, we may look into a custom version, but this one really seems to be working.

Caleigh's doesn't mind it at all. She says that she likes it and that it helps her when her head is tired. I was thinking it would be a hard transition taking away the mouthing but she's done well with it. We've added in extra oral motor time for her as well.

It's allowed her to use her stander more appropriately. She's finally taking steps in her walker again. It gives her a chance to interact with what's going on around her instead of going to her comfort zone. Most importantly she's safer in our vehicle. As strange as it may look fashion wise, it's a keeper.

If anyone needs a neck model for accident and injury lawyer commercials.....our girl is open to reasonable offers....

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.....