Halloween Weekend Summary

This was Charlie’s first Halloween trick or treating. During her first Halloween, we were in isolation. For her second Halloween, we took her to collect candy at Target because she was unable to walk. This Halloween was her first going door to door and she loved it.

Charlie and her dad pre-game before the office Halloween party.

Thursday night was like training for Halloween. Charlie’s dad’s office had a Halloween party. She dressed in her Elmo costume (which she picked out), decorated a pumpkin, and learned to trick or treat at the cubicles.

The employees also had a costume contest. There was someone dressed up as a scary blood covered wolf with a plastic chain around his neck. Charlie kept waving to him and saying, “Hi doggy!”

The actual night of Halloween, we went to a friend’s neighborhood. Trick or treating in our dark mountain neighborhood is not the safest of ideas. Our friend’s daughters joined us (and helped) as we took Charlie door to door for the first time.

Charlie made her way up the first porch steps (with help) and stood patiently while the homeowner answered the door. When the door opened Charlie exclaimed, “Snacks please!”

By the next house, she relearned to say “Trick or treat”. Now, she blurts it out repeatedly whenever she hears something that sounds remotely close to it.

Halloween turned out to be much more fun than I had anticipated.

The next day was the first day of November or as my news feed reminds me, Prematurity Awareness Month. My next post will address the month long observance.

When Elmo met Pooh.

 

I Confess, I Hate Feeding

I have to say it. I hate feeding. Or rather, I hate feeding disorders. For two and a half years, we’ve been desperate to avoid the g-tube and have managed to do so, so far.

As far as feeding goes, it is a see saw ride between hope and discouragement. I find that Charlie’s feeding disorder affects my relationship with food.

Before all this, I relished mealtime. Now, eating feels more like a mundane chore. I’m no longer excited or enticed by dishes or deserts.

I’ve lost the ability to derive pleasure from eating. It has become a routine like brushing one’s teeth…  something we do to stay healthy and alive.

I blame the change on our struggle with Charlie’s feeding disorder.

Our most recent set back happened at her last weight check. The use of erythromycin has helped significantly with Charlie’s gastroparesis (delayed gastric emptying). Charlie indicated that she was ready to attempt a slow transition to solids.

Not only did she tolerate solids (soft solids), she ate well. We continued to offer her the usual formula but we introduced more solids. At first, it was mostly for practice. But she enthusiastically gobbled the offerings and also wanted to try the food on our plates. We happily indulged her desires.

It seemed like between the formula, what she ate off our plates, and the food we offered her that she was always eating.

When it was time for her weight check, I was excited. I couldn’t wait to see how much she gained. I dared to hope that it was the beginning of the end of her feeding issues.

The nurse placed her on the scale and announced her weight. I gasped. How could she have possibly lost weight?

I tried to figure out the inconsistencies. Was it the same scale? Was it a naked weight? Was the scale zeroed properly?

I couldn’t figure out the missing weight. That day, I called the feeding clinic and let them know that there may be a problem. I wanted to be proactive before it turned into a bigger problem.

The feeding clinic’s dietitian requested that I keep a food log for Charlie. I diligently and meticulously (I have chemistry experience) documented every morsel of food that Charlie ate.

However, I discovered a problem. Charlie eats very slowly and pauses frequently because she is tired. This is why she eats all day.

The dietitian wanted me to break it up into breakfast, lunch, and dinner. But, Charlie ate continuously through out the day and there were no defined meals. I documented everything by day. The dietitian could figure out breakfast, lunch, and dinner.

The results? Charlie consumes 130% of her caloric needs. She also consumes more protein, vitamins, and nutrients than required. As of right now, we are unsure why she lost/is losing weight.

But, there are a few theories.

First, Charlie is extraordinarily active for a two year old. Maybe she is burning more calories than she is taking in.

Second, maybe there is an issue with poor digestion or malabsorption. When she was 100% formula fed, she didn’t have weight loss issues as long as she ate the amount of formula recommended. But, the formula is fully hydrolyzed (broken down) which makes it easier to digest.

It could be none of these things.

Maybe the weight loss was just a random fluctuation or there was an error during the weight check. And, her next weight check will be better.

Her next weight check is in a week. I hope it goes well. I have my fingers crossed that this is just another scare. If not, her follow up with the feeding clinic is the following week.

A sneak peek of Charlie’s Halloween costume which she wore this week to Chuck E Cheese.

 

 

The Promised Pictures

We had a lot of fun at the March of Dimes Signature Chef’s Auction. We feasted on delicious dishes and met some incredible people.

As usual, Charlie flirted shamelessly. Charlie seems to really enjoy interacting with people.

In the beginning of the evening, she handed out the favors and we thanked people for attending. Later, she tossed the football back and forth with attendees while a football package was auctioned off (and continued on with it past the sale of the item).

As promised, here are some of the pictures from this weekend.

 

 

 

Busy, Busy, Busy

OK, so I’ve missed every Blogtober Challenge this week. But, I’ve had a good reason. I’m swamped.

In addition to Charlie’s usual appointment schedule, there have been dresses to borrow, a radio interview, a Preemie Babies 101 deadline, and this weekend to prepare for.

This weekend is our local Signature Chef’s Event ( a fundraiser for March of Dimes). I’m really looking forward to it. A couple of our friends are staying with us and attending the event.

I promise to post pictures of Charlie in her gorgeous dress (which we were lucky to borrow from a friend) after the event.

Charlie throwing leaves (and gravel) over her head.

Blogtober Day Ten: Best Advice

Today’s Blogtober Challenge is to share the best advice I have received. I woke up this morning and planned to revisit the story of the three legged dog. During my morning routine, I thought about how I would write it up.

However, my back bothered me at breakfast. It was a warning. I needed to walk before things got worse. But, my back hurt enough that my usual hike was out of the question.

If it won’t be a challenge, then why bother walking? Maybe, I could not walk today, catch up on things at home, and walk tomorrow.

I had almost talked myself out of walking.

But, I learned my lesson in the past. If I don’t walk, things will get worse. It certainly won’t be any easier to walk tomorrow or the day after it.

I decided I could do an easier walk. It didn’t need to be strenuous or impressive. I simply needed to move. I could start where I was.

That, right there, was the best piece of advice that I have ever received. When taking something on, start where you are. Unfortunately, I don’t remember who shared it with me.

Basically, it means that everyone starts something somewhere. When a task, an idea, or a project seems to be overwhelming, pick a small starting point and do it. The next day, build on that and do a tiny bit more. Even though it seems like baby steps, progress moves quickly. It doesn’t take long for where one is and where one desires to be to become congruent.

My walking buddy on today’s walk.

We’re Not Supposed To Be Here

“We’re not supposed to be here” has been my pouty mantra since around the end of the summer. A therapist or a doctor will tell me how well Charlie is doing. I respond along the lines of, “She is… but this isn’t how it was supposed to be.” I remind them of the empty promises from the neonatalogists and the unfulfilled prophecies.

Charlie wasn’t supposed to need all the specialists or therapists. She was supposed to “catch up” quickly and easily. This wasn’t supposed to be our life.

I know, it’s small, it’s petty, and, even childlike. But, I have been sulking. It’s not one loss I’m learning to cope with but countless other losses that unexpectedly hit with a crushing blow. The proverbial roller coaster ride never really ended for us.

The past two and a half years have been very long and feel like a completely different life. So much so, that when I visit places I lived prior to Charlie’s birth it feels like I’m visiting a dream. I know the place well but I feel like it was someone else’s life that I remember occurring there. Not mine.

After dinner, I took Charlie to get her non dairy frozen ice cream substitute. She loves it and will devour it with a smile on her face.

I sat there and watched her gorge while totally focused on the treat in front of her. During the moment of silence, I thought about how much we laughed today, the new word (“funny”) she said, and all of the fun we had together. Then, it hit me.

We’re not supposed to be here.

At least, she’s not.

They thought she wouldn’t survive her delivery. Yet, she was gobbling ice cream in front of me.

I don’t know where we are supposed to be. I suppose I will have to make it up and chart the course as we go.

However, today, the phrase “We’re not supposed to be here” transitioned from a phrase roared in frustration, anger, desperation, and exhaustion to one whispered in breathless awe.

Blogtober Day 9

Today’s Blogtober Challenge is to share a favorite back to school memory. I thought about skipping today’s challenge and sitting this one out.

The thing is, I didn’t think I had a favorite back to school memory. As hard as I tried, I could not think of one happy memory from my grade school or high school years. Back to school time was miserable for me.

My dislike of school started early. I remember having a brief bit of excitement about school before starting kindergarten, but it disappeared after the first day.

Elementary school didn’t make any sense to me. I tried to be good, follow directions, and learn. However, I constantly got in trouble for things like talking, asking too many questions, not following directions, being too loud, or moving around too much. I was spanked by my kindergarten teacher.

Early elementary me.

In first grade, I had trouble with addition and subtraction. I raised my hand and asked, “When subtracting 3 from 10, does ten count as a number that is subtracted or do you start at nine?” The teacher looked at me like I was crazy. I consistently missed math problems by one number for some time after that.

In second grade, I had all A’s and B’s except for handwriting. I tried to do well in handwriting but failed miserably. The teacher said it was because I rushed through the assignment.

I badly wanted to make honor roll. The next handwriting assignment, I took my time and did my very best. I was proud of myself as I approached my teacher’s desk to have it graded.  “This is it. I finally did it. I’m going to get at least a B.” I thought to myself.

I handed it to the teacher. She looked at it for a total of three seconds before scribbling a C- on top of it with her red pen. I held back tears as she lectured me about not being in such a hurry.

I think that was about the point I checked out. I rarely, if ever, did my homework my entire school career. I cruised through my classes doing the bare minimum. Sometimes, I’d make honor roll and other times I’d come close to failing. I couldn’t have cared less either way.

For some reason, they kept passing me through the grades. I assume it was because I tested well on the standardized tests.

High school was its own nightmare. In addition to my early acquired aversion to school, I had the social scene of a small private high school to contend with.

For starters, my insecure older brother and his friends had nothing better to do than taunt and harass me. In hindsight, I see they had the problem. But, that didn’t make things better for me back then. It was miserable to be ridiculed and laughed at constantly by that group.

I didn’t have the tight knit group of friends that often appear in adolescent movies. Does anyone? Other than wearing the same button down collar shirts and scratchy polyester plaid skirts, I had very few things in common with my classmates.

High School Me

The administration was detestable. They arbitrarily enforced rules when it was convenient or if a loud or wealthy (sometimes both) parent got involved in a situation. The image of the school seemed to be a higher priority than the actual schooling it provided.

We did not have locks on our lockers and I constantly had things stolen. The missing items ranged from small things such as pens to the large (to a high schooler) like my twenty dollar bill. I complained to the administration about it several times. The response I received was, “Are you sure you don’t lose things? People don’t steal here.”

Like everyone eventually does, I did have a couple of excellent teachers. I suppose their classes were the reason I did not out right refuse to go to school all together.

Day after day, I went through the motions comforted with the knowledge that it had to end eventually.

After the required twelve years (thirteen if you count kindergarten), I had successfully jumped through all the hoops and graduated in the top half of my class of twenty six. My distaste for school had become so powerful that I didn’t want to go to college.

College was for other people, not me. I wasn’t intelligent and I didn’t want to be anything. All I wanted from life was to be happy and feel safe. School wouldn’t help with either of those things or so I thought.

A few years later, I fortuitously received an honors scholarship to a local community college based on my SAT scores. I had decided that I wanted to do more with my life but didn’t know what. The community college honors program was the first time I was ever happy in school. It was my awakening, my chance.

As it turns out, I do have a good back to school memory after all. Mine just happens to come much later than most. I loved my college education… almost everything about it. I loved the classes, being an RA (once I transferred to a four year school), the chemistry lab, and the friends that I made. By the time I received my degree, I had opened up to seeing and believing in possibilities. To this day, I still am and do.

 

 

 

 

Blogtober Day 8 Challenge: Just Your Average Bag

Woo hoo! It’s Day 8 of the DC Ladies Blogtober and I’ve somehow managed to keep up! Today’s challenge is to write about and photograph what’s in my bag.

I’m going to admit, it feels odd to write a blog post exclusively about the bags I carry in my day to day life. But, here it goes…

I typically carry a messenger bag and a diaper bag. It seems excessive but the tactic is the easiest way for me to stay organized and manage everything.

I will start with the easiest. The diaper bag contains typical items such as diapers, wipes, a change of clothes, formula, and sippy cups. Depending on the time of day or length of the visit, I can take or leave it in the car as needed.

My messenger bag, on the other hand,  is my survival bag and it goes everywhere.

There are the expected items such as keys, wallet, and phone. While I have never worn makeup (note: I will need help if Charlie ever wants to wear make up), I’m a big lip gloss fan and always have a tube handy.

Maybe, a little more unique are the health/medical items. I carry oral syringes to administer Charlie’s medication ( which is kept refrigerated in an insulated lunch box) while we are out. Additionally, I consistently carry hand sanitizer. Charlie is doing well. But a cold, the flu, or an illness are dangerous for her preemie lungs.

The Tums, naproxen, and inhaler are mine. I’ve had an ongoing moderate issue with asthma since my pregnancy. After three spine surgeries and an inevitable fourth in the future, I live with chronic pain. It is the reason I walk as much as I do. I think it is also the reason why I feel like I need to stay on top of things with Charlie’s health. I don’t want her to end up like me.

The remaining items: the coloring book, crayons, Kindle, and ear buds are for the long waits. I spend A LOT of time waiting for things like doctors, therapy, clinics, and prescriptions. These items keep those waits incident free and peaceful.

After surveying the contents of my bag, I realize it is rather ordinary. I think what I wish was in my bag would be more interesting.

In my wishful bag dump, I would find plane tickets to Nairobi or keys to an RV.

What’s in your bag? What do you wish was in your bag?

 

10 Things I Am Thankful For

Today’s Blogtober assignment is to compile a list of ten things I am thankful for. Despite all of my rants and complaints, I do have many things for which I am grateful. I think I will start my list with the most obvious but the rest is in no particular order.

I am thankful for: 

1) … Charlie and that she survived.

2) … growing older. It’s a privilege denied to many.

3) …the people in life who carry out random acts of kindness. The ones who take a moment from their lives to go out of their way for other people. Like the gentleman who offered his seat to me on the Metro, the people who hold doors open, the neighbors who make meals for practical strangers, and the countless others who contribute their time, talent, or money. Whether the act is big or small, every act is significant.

4) … for the outdoors. It has been a substantial part of my healing process. No matter how overwhelmed, sick, defeated, or hurt I may feel, being outdoors is a panacea.

5) … my friends and husband. I am blessed with extraordinary friends. I am fortunate to receive their love, understanding, kindness, support, encouragement, and time.

6) …writers, authors, bloggers, and anyone brave enough to write down their thoughts and ideas for others to read. Almost every night, I wind down before bed with a book. I can’t imagine the world without the written word.

7) …my Share Your Story people. I would be walking this post NICU journey alone without them.

8) …music. Through singing, playing, listening, and dancing, it has the power to commiserate, inspire, celebrate, immortalize a moment, transform, and heal.

9) …my animals. I am not sure who rescued whom.

10) …the world. There is never a shortage of places to visit, languages to learn, music to hear, new ideas to discover, people to meet, new foods to eat, and experiences to enjoy. I am incredibly lucky to be an infinitesimal and minute quark in the midst of it all.

My Five Blogging Tips For The New Blogger

Day six of the DC Ladies Blogtober is here. Today’s challenge is to share my top five blogging tips for a new blogger. This is what I’ve managed to figure out thus far.

1) Get connected. Get to know other bloggers. These bloggers don’t necessarily have to be in your niche or write about your topic. Other bloggers can be a fantastic resource for ideas, second opinions, opportunities, support, encouragement, and trouble shooting.

How does one meet other bloggers? Comment on their blogs, connect on twitter, or send an email. Every blogger was new to the game at some point and most are willing to at least say hello.

2) Be Yourself. My favorite blogs to read are the ones in which an author is genuine. Faults and all, I enjoy when a blogger’s personality, thoughts, and feelings are conveyed through clever writing.

Keep in mind that the internet is a vast resource. Most of the information that you have to offer can be found elsewhere. What makes your blog unique is you. Some of my most popular posts made me feel very vulnerable when I hit publish.

On the other hand, don’t try to be something you are not. I stop reading as soon as I feel the author is being phony or trying too hard to push a desired image.

3) Decide in the beginning what you want from your blog. Do you want to advertise on your blog? Is your blog an extension of your company’s website? Are you trying to connect with others in your field or interest? Or, maybe you just want to write for your own purposes?

Knowing these things before hand will help you decide on the appropriate blogging platform, find your reader base, and will assist in planning a strategy. It’s easier to deal with these things in the beginning than have to shuffle everything around later.

For me, I determined that I wanted my blog to be a place to vent and connect with other parents like myself. I knew that I didn’t want to blog for a long term and wanted Charlie to have her privacy as she grew. This information impacted my choices.

Things like advertising, paid posts, and so forth did not feel right for what I wanted from my blog. Plus, I know I want to wrap up my blog when Charlie turns three.

4) Social media matters. Blogging is social. A social media presence is key to increasing your blog readership. Interact with your readers and let future readers know that your blog is out there.

This is an area that I could improve quite a bit. If I had the time, energy, and drive, I would use Facebook like a mini blog and post pictures, updates, and questions unique to that account. In addition, I would update Twitter a few times a day with something funny or thought provoking.  Finally, I would have lovely Instagram images and Pinterest worthy graphics.

Social media accounts shouldn’t be entirely self promotional. Share other articles, news items, blogs, or things of interest to your readers or followers.

5) Be creative and experiment. Almost every website, book, or article on blogging will attempt to discuss SEO, click bait, and successful blog post formats. Yes, these things do work in driving traffic. But, it doesn’t necessarily build readership if someone visits your blog once for click bait.

Use the blogging basics as tools and build on them, change them, and make them your own.  Don’t be afraid to write a post that doesn’t follow popular post format. Take chances and try something new.

Fall Festival And Time To Fatten Up

We started today off at a Fall Festival at Sky Meadow’s State Park. There was a chill to the air, low lying fog, and the ground was wet. That is precisely why we chose today to go. We knew the crowd would be sparse.

Our visit to the festival was a fun and relaxing time. Charlie was afraid of the baby cows in the petting portion, loved the blacksmith exhibit (as usual), liked picking her own pumpkin, played in the kids area, and enjoyed the food vendor. But her favorite part was a display set up about Chesapeake Bay water shed.

The display consisted of a table with a model garden set up on top. The garden was complete with vegetables, plants, and plastic back yard wild life. Hanging off the side of the table was a sheet that displayed what is under top soil. Under the table (behind the sheet), was a crawl way in which there were plant roots from the above garden.

Charlie loved the crawl way.

The stress of the cows mooing (it was an ongoing sensory thing we had to contend with) and the excitement of all the activities tired her out quickly. We ended up leaving earlier than intended. I had planned on letting her play outside all afternoon.

Our early departure turned out to be a good thing because the home health nurse arrived at our house an hour before her scheduled time. She performed her usual rituals and listened to Charlie’s lungs to ensure aspiration pneumonia does not become an issue, checked her vitals, and weighed Charlie.

Charlie has been eating very well recently. So well, that I had expected a leap in weight gain. Unfortunately, Charlie lost weight according to the weigh in. Not a huge amount of weight, but none the less, weight loss (half a pound).

I have racked my brain in an attempt to figure out where the weight went. I made sure there weren’t any variables between weight checks. We used the same scale, naked weight, and so forth. The only reason I can imagine for her weight loss is that she is incredibly active. Energizer bunny active.

So it’s back on the phone with the feeding clinic for me on Monday. Once again, I have no idea what to do about Charlie’s feeding situation. Who ever knew something like feeding could be this complicated?

Blogtober Challenge Day 5: Favorite Fall Recipe

Today’s Blogtober Challenge almost stumped me. I suppose I could discuss the fine art of making green bean casserole. But, French’s Onion stole my thunder by printing the recipe on the back of their cans.

OK, I confess. I am not much of a cook. It’s not that I hate cooking or am particularly bad at it. It’s just that other than passing phases, I haven’t had much interest in learning to cook.

More often than not, we are a sandwich, salad, fruit, and veggie kind of family. We mix things up with nuts, seeds, and grains. We also grill out quite a bit.

Now that you are aware of my cooking ability (or rather, lack of), you will understand the ease of the upcoming recipe.

Lately, I have been all about soft foods as an attempt to get Charlie to eat solids. Some of her favorites are bananas, macaroni, rice, beans, hummus, avocados, mashed potatoes, tomatoes, grapes, kiwi, and toast.

Every once in a while I will cook up a quiche which she loves.

Before you are wowed, you should know that I use a recipe that is quick and easy. I can manage it with my limited cooking skills, small selection of available cooking utensils, and with Charlie clinging to one leg.

With out further delay, here is my response to the DC Ladies Day 5 Blogtober Challenge:

Quick and Easy Quiche

Ingredients:

• Frozen 9 inch pie shell
• 3/4 Cup of Milk
• 5 Large Eggs
• Add about two cups (total) of anything you want to cook up in the quiche such as chopped vegetables, precooked bacon, deli meats, cheese, precooked meats, and herbs.

Directions:

1. Preheat oven to 350 degrees Fahrenheit.
2. In a bowl: beat eggs, beat in milk, and then mix in other selected ingredients.
3. Pour contents of bowl into the frozen pie crust.
4. Bake quiche on a cookie sheet on the middle oven rack for 45-50 minutes. The top should be brown and a knife inserted into the middle should come out clean.
5. Once the eggs are cooked through out, remove from oven, cool to a safe temperature to consume, and enjoy.

Charlie eats her formula like a good eater.

 

Blogtober Challenge: A Piece Of Advice For My Younger Self

As you may already know, I’m shaking things up a bit this month and participating in the DC Ladies Blogtober. Today’s challenge asks “What is one piece of advice you’d give your younger self?”

It’s quite simple really.

I would tell my younger self that the great ones make others feel that they, too, can be great. Surround yourself with those people and try to be one of them.

I wish I would have known earlier that the people worth letting into your world help you feel good about yourself and your life, re-energize you, and being with them relieves stress. Not the opposite.

I’ve had the honor of knowing quite a few people who have filled me with hope, given me direction, held my hand during tough times, inspired me, challenged me to think, gently pushed me out of my comfort zone, rooted for me, and (because of all that) have made me a better person.

Out of everything I learned over the course of my life, I think that lesson may be the most important and the one I wish I knew when I was much younger.

I think I would tack on: You become what surrounds you. Surround yourself with the type of people you’d like to grow into and the things that make you happy. Don’t waste precious time with the other stuff.

Before music therapy yesterday, Charlie played in the lovely fall weather.

7 Things On My Fall Bucket List

To do something a little different, I’ve decided to participate in the DC Ladies Blogtober (it’s not too late for you to join in). Today’s challenge is to write a fall bucket list.

So here it is. In no particular order, My Fall Bucket List:

1) Begin to wean Charlie off of her formula.

2) Play in the leaves with Kaia (our dog) and Charlie.

3) Visit Harpers Ferry before the leaves fall.

4) Introduce Charlie to caramel apples.

5) Get lost in a good book for a day on the front porch and enjoy the fall air.

6) Clean the house thoroughly before we are snowbound during the winter.

7) Have a bonfire with friends.

Charlie is unsure of what to think about the wind. And yes, she did try to taste it.

 

 

I Scream, You Scream, Charlie Speaks For Ice Cream

I had a feeling it was going to be a great semester for Charlie’s speech. I knew in the second week that Charlie’s student therapist understood Charlie. As sweet and cute as Charlie is, she is highly energetic and difficult to focus (more so than most two year olds).  She can be a handful.

By the second week, the student therapist had learned to work with Charlie amazingly well. I was impressed.

This is what part of the screen looks like when I watch from the observation room.

For most sessions, I sit in the observation room with the other parents and watch the session over the cameras on a computer screen. I did this initially in case Charlie became unruly or melted down. I wanted to be able to rescue the student therapist if needed. Now, I just sit there, read, and occasionally glance up at the screen.

What goes on during speech therapy? A variety of play activities. Each semester, I’m always impressed by the students.

If Charlie starts to run circles in the room, the student therapist patiently says, “Oh, you need to run? OK, lets go to the sensory room and bounce on the trampoline.” While Charlie bounces, the student therapist sings a song about bouncing with her.

In another activity, Charlie pretends to shop and has to ask for each item she wants to put in the cart. In Charlie’s favorite activity, she plays basketball where she has to ask for the ball and to be lifted up to the hoop with “Want up!”.

Last session, she played a considerable amount of time with a fake ice cream cone. I noticed it when I looked up at the screen. I thought it was odd because Charlie has never really had ice cream. She gets the non dairy stuff when we go get ice cream. Not the type of ice cream she was playing with while learning to say “ice cream”.

Later that evening, Charlie, Charlie’s dad, and I grabbed a quick bite to eat. After we were finished, we passed the yogurt store where Charlie gets her non dairy treat. She pointed and exclaimed, “W-want ice cream! Ice cream!”

I was stunned.

We actually understood what she was saying! How did she make the connection that her non dairy treat in a cup was the same as that creamy looking cone she played with earlier?

We were obligated to follow our rule. If Charlie uses her words to ask for something, she gets it. She got her non dairy version of ice cream that evening.

Overall, I’ve noticed significant improvement with her speech. Charlie experiments more with two word phrases such as “Bye daddy!” and we can understand more of what she says.

Feeding is finally moving forward as well. With the introduction of erythromycin, she eats more than two bites, doesn’t vomit, and her reflux is gone. She still has difficulty tolerating some textures and with chewing food. However, I’m relieved that she is no longer stuck.

 

Family Photo

Today, we took our traditional family photo. The whole thing became an accidental tradition.

When Charlie was in the NICU, the nurses would occasionally mention that we should take our first family photo. I refused. Back when I had no control over anything and felt completely powerless, that was something I could decide. Our family would not be documented, for the first time, in that way or at that time.

Looking back, I realize it was silly. But, I still had fantasies of leaving the NICU and forgetting all about preemie life.

After Charlie had been home for a few weeks, we decided to go to an apple orchard about an hour away. We lived in the Fairfax area at the time which made the trip sort of magical. There were open fields, fresh air, apples one could pick off trees, and fewer people. Things we did not have where we lived.

Suddenly, I decided that this was the place I wanted to take our first family picture. I remember silly things about the moment. Such as how the guy who took our picture commented, “How old is that baby? Three hours?” I remember how we were staring into the sun and how I stepped on a rotten apple. My eyes are barely open in it. But, there you have it. Our first family picture.

A few months later, we decided the Fairfax area was no longer right for us. We left DC Metro suburbia for the mountains. The following apple season we discovered that we now lived about twenty minutes on the other side of the apple orchard. We returned, picked apples, and took this picture.

I don’t remember too many details about the trip.

Now, here we are. Another year has passed and we are over that orchard. There are dozens where we live and the novelty has worn off. However, today, we made the pilgrimage simply to take the traditional picture.

It’s interesting how things have changed in two years. What was then fewer people is what we now consider crowded. The walk up that big hill (which was a challenge the first time) was a piece of cake because we spend a lot of our free time hiking. The biggest change of all, Charlie walked up the hill (with assistance) with us.

So here it is… this year’s picture.

A side note: Kaia (our dog) is not in the picture with us this year. She is alive and well (and the best hiking partner ever). But, we went to other non dog friendly places after this picture was taken.

Where Things Stand With Feeding

While I was in Arizona last weekend, Charlie’s gastroenterologist left a voice mail. The upper GI showed Charlie has significant gastroparesis (delayed gastric emptying).

To get things moving, he prescribed erythromycin (an antibiotic that has a side effect which helps with motility) to be given twenty minutes before she eats.

So far, so good.

Finally, Charlie’s reflux is no longer an issue. Plus, she doesn’t vomit at night, her breath doesn’t smell like vomit, and she eats more than two bites of food. I hope this is the missing piece to the feeding puzzle (which also includes oral aversion and motor issues). Time will tell.

Today, she played in the backyard. She loves her car but she only knows how to make it go backwards.

 

 

Arizona

Very late last night, I returned from a trip to Arizona. You may wonder why I went to Arizona. I attended my second Share Union.

So now, you may want to know what the heck is ShareUnion. Words do not do ShareUnion justice but I will do my best to try and explain. It’s an amazing opportunity many of you may be missing out on.

Some parents (myself included), feel that while in the hospital or NICU there is a lot of support from social workers and staff. However, once you journey beyond the institutional setting that support is often difficult to find. That is where Share Your Story steps in.

One of many March of Dimes programs is the website Share Your Story. It is a website for NICU parents, special needs parents, parents who have lost a baby, parents of babies with birth defects, parents who have lost a pregnancy, people struggling with infertility, parents to be with high risk pregnancies, parents of babies born sleeping, and pretty much anyone else dealing with a birth related issue.

The site offers several features. There are forums where topics are discussed and questions are asked. Additionally, users can start a blog. Worried that you aren’t a good writer or fret because you don’t know how to write a blog? Don’t. The blogs on the site are different than other blogs. No one on the site focuses on things like style or grammar. The interface is not complicated. Your message and what you have to say are the important things. You can help other parents just by participating in the blogs or forums.

Plus, there is a photo gallery to post pictures. I’m sure I’ve forgotten many other features. I encourage you to visit the site and peruse it. You are bound to find something useful.

Back to ShareUnion:

In simple terms, ShareUnion is the annual gathering of the Share Your Story site’s users, lurkers, and want to be users. However, it is so much more than that.

Everyone gets something different out of it, this is what I get:

Since Charlie’s birth, I have lost my connection with the world around me. I don’t share in the common experience of those around me in my everyday life. I feel like I don’t belong and hardly anyone truly understands my world. That is not the case at ShareUnion. Most of the attendees are walking or have walked in my shoes or similar shoes.

Also, I have lost my sense of safety since Charlie’s birth. I have anxiety daily over things I would not have given a second thought prior to when all this began. Each time I attend ShareUnion, I feel it is a step further in getting my feeling of safety back.

Finally, the moms who have lost babies can talk about their babies or the NICU parents can talk about their experiences openly. There is no social awkwardness or having to pretend that everything is OK. It is what it is and we help each other survive it. We celebrate our children’s lives.

The attendees have become like family to me. I don’t want anyone interested in attending to miss out because they did not know about it.

The ShareUnion gathering is free and includes sessions, speakers, and (delicious) meals. However, each attendee is responsible for transportation and lodging (having roomates cuts the cost significantly).

If you are interested in attending next year’s ShareUnion (sometime next summerish), get started on the site now. The more the merrier. I hate that all of us met this way but I’m so glad we did.

 

Tag! You’re It!

Tonight’s post is very brief because we have to be up before dawn tomorrow for Charlie’s Upper GI.

After today’s speech therapy (which went really well!), I took Charlie to a new (to us) park. Normally, when we go to the playground, I end up playing with Charlie. The other kids usually refer to her as a baby and show no interest in playing with her.

Today was different. Charlie played her very first game of tag! It was a big day in our world.

 

 

 

Plastic Toys

Today was the first day of speech therapy for the fall semester. Charlie is back to her four day a week therapy schedule. Summer was nice while it lasted.

Charlie attends speech therapy twice a week at a local university. It is much more affordable than private speech and has been more effective than EI. Since it is a teaching program, SLP students conduct the therapy session under the video supervision of an instructor.

Each semester, the student assigned to Charlie changes. Charlie met her speech therapist for the fall semester today. She did well with Charlie. I think this is a promising semester.

Afterwards, I took Charlie to Chuck E Cheese’s for dinner.

I think I’ve mentioned Charlie LOVES Chuck E and all things Sesame Street. The excitement of both things brings forth those elusive words. Activities that involve Chuck E Cheese or Sesame Street are frequently on our schedule.

If it’s timed right (off times when it’s empty), it’s a therapy dream. With minimal effort on my part, she can work on: sensory (loud noise, bright lights, motion from the rides), feeding, OT (put coins in slots, push buttons, work the toddler games), PT (builds strength pulling leavers, climbing up on rides, dancing), and speech (she mastered the “eee” sound by saying “Chuck E”).

This evening, Charlie and I went about our usual routine at Chuck E Cheese’s: we chit chatted with the manager while we ordered food (yes, the employees know us by now), we worked on feeding (the video distraction makes for longer feeding attempts), we watched and talked about the video loop (Charlie: Doggy! Me: That’s right! What’s the doggy doing? Is the doggy singing? Do doggies sing?), we danced (with Chuck E and to the video loop), we played games (she likes the Feed The Pig game), and she rode rides (she loves the carousel).

At the end of it all, Charlie and I went to cash in her tickets. This part has been a challenge.

She asked for something the last two times we redeemed her tickets. However, I couldn’t understand her. It was the same sound both times but I couldn’t make out what she was saying.

Both times, she was satisfied with whatever toy she happened to receive. But, I felt bad. Charlie was trying. Despite her best efforts, she couldn’t get what she wanted because I failed to understand her.

Tonight, we stepped up to the counter and Charlie said, “Appy”. The same sound she said the past two times. I took a fresh look at the glass case as she said, “Appy” again. I glanced at the employee (the staff is amazing) with an expression that begged for help. I didn’t want to waste his time but I desperately wanted to figure out what she was trying to say.

The last time, it sounded like a question, “Appy?”

I scanned the case again and IT CLICKED!

I blurted out, “Airplane! Do you want the airplane?” Charlie said, “Yeah! Appy!”

I passed the little plastic airplane from the employee to her hands. She took it and pretended to fly it among the games and rides.

Once again, I had to fight back tears.

Charlie attended a birthday party last weekend.