Category Archives: Outdoors

The Strangeness of Time

The feeding program evaluation went well. Charlie will attend the intensive feeding program this spring/summer. I should receive the dates any time now. SR Park Selfie

Charlie will be three soon.

Three. Years. Old.

It feels like it has been at least twenty years since she was born. Maybe, that is because of the seemingly endless infancy stage. For example, we finished regular late night feeds a few months ago, she continues to be formula dependent, and there is no end to diapers in sight.

Or, time could be dragging due to the monotony of a schedule packed with specialist and therapy appointments. Possibly, time crawls due to the high levels of stress and emotional exhaustion that accompanies micropreemie parenting.

Whatever it is, these last three years have felt infinite. When I look at NICU pictures or Charlie’s baby book, it feels like they are artifacts from forever ago. I barely remember my life before Charlie. My memories feel like someone else’s, not mine.  I have grown and changed so much that I hardly recognize myself. It has been a long three years. However, there is one aspect that has flown by… our Trail Quest.

The first time Charlie's thrown stone made it into the river.

The first time Charlie’s thrown stone made it into the river.

The point of the quest is to visit all thirty six Virginia State Parks. It started out as a way to survive lock down. Then, it evolved into an adventure Charlie and I shared. Sometimes, we include my husband, our dog, or both.

We have fun on our outings. We make memories. We relax. We play. We learn.

The other day, I sifted through our numerous photos from the parks. Everyone of the photos feel like they happened yesterday. I finally understand what people mean each time they say, “They grow up fast.”

Before looking through the pictures, her growing up felt anything but fast. The life depicted in the park pictures is how it was “supposed to be”. That is what I signed up for when I wanted to be a parent. The park visits are part of our “normal”.

Last Saturday, we visited our thirty third state park. We are getting close to the end and I’m surprised to find I’m a little sad. It was about the adventure and not the goal. I expected to feel nothing but celebratory when we finished.

Darn, those complicated emotions! Will the thirty sixth park be the end of our park obsession? No. One reason why is that the state park system is working to add more parks. I suppose we will never truly be finished. Plus, I’ve noticed that each park is a very different place as seasons change or as Charlie and her skill set grows.

From time to time, I mourn the loss of the pregnancy, baby, and toddler experience I didn’t have. But, I’m so grateful for the one I do have. I feel fortunate for every minute and second… even the painfully slow ones. Tyke Hike Pose Charlie attended a Tyke Hike (a hike for two to four year olds) on Saturday. These two pictures are from that hike. 1510901_10102280045337739_8432824672223672896_n

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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.

10639600_10101976504940129_9113146869104312045_nThe 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?


Flight

10599193_10101903098901419_4288387578415227_n_editedCharlie has her Medicaid Waiver screening tomorrow. I’ve worried about it for about a month. If Charlie is found not eligible for a Medicaid Wavier, then we lose Medicaid as Charlie’s secondary insurance.  With all of her needs (PT, OT, ST, formula, medication, etc), I don’t know how we’ll manage without it.

Without Medicaid, the services available to her will become limited and she will have to discontinue some of her therapy. We will go even deeper into medical debt because the bills will pile up much faster.

For the last month, I’ve gathered documentation and researched the waiver process. I’ve had nightmares the past two nights about losing Medicaid as her secondary insurance.

10516774_10101903098048129_3487054563820410646_nThis morning, I woke up and looked over her paper work. Then, I realized that I am as prepared as I will ever be. I took a deep breath and decided to try and stop worrying about it. Tomorrow, I have a fight. Today, rather than stress over it, I chose flight.

Charlie and I went to Leesylvania State Park. She played in the water (her sensory issues are improving remarkably), climbed on the playground, and walked on a riverside trail (her legs are getting so strong). It was relaxing and I could forget about the medicaid waiver issue for the afternoon.

Wish us luck tomorrow. We need all the positive thoughts we can get.

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The Great Escape

10653621_10101893479149479_4936584095703173115_n_editedBack in January, through something short of a miracle, we won a contest. The prize was a week long cabin stay at any Virginia State Park of our choice. We ended up choosing Natural Tunnel State Park and celebrated the anniversary of Charlie’s NICU discharge there last week. It was the vacation I hoped for and desired. So much so, that I’m bitter about being back.

My husband and I decided to disconnect from our lives. Other than using the visitor center’s wifi to upload pics and respond to a few tweets, we were out of contact. It was a marvelous escape.

I countered phone calls, emails, and text messages from doctor’s offices, therapists, and the like (whom can be surprisingly persistent over trivial matters) with the simple message “On vacation, will return on Saturday.” I did not have to answer questions from people such as, “Is she eating yet?” or “Isn’t she really small for two?” Nor, did I have to politely listen to unsolicited advice.

It was exceptionally quiet. I love quiet.

984177_10101885614994309_3831279311050384390_nThe area was extraordinarily beautiful and rich in history. The first few days we explored every inch of the park. Charlie went swimming, my husband went fishing, and I went hiking with our dog. We played on the playgrounds, rode the ski lift to the Natural Tunnel, and climbed up to Lover’s Leap. Charlie found a trail marker with a “2” on it and she stood over it saying, “Two, two, two, two, two…” We had to pull her away to finish the hike.

Later, we ventured over to nearby Wilderness Road State Park. We poked around the historic area with the fort and talked to the period actors. Charlie liked the blacksmith. She exclaimed “Whoa!” when the bellows blew sparks and said, “Ding!” each time he hammered. Wilderness Road had a really nice playground but Charlie preferred playing in the natural play area.

10605993_10101884004162429_5830653123281358990_nTowards the end of the week, we visited Southwest Virginia Museum State Park which was also near by. (For those who are counting, that makes 28 out of 36.) The museum was filled with artifacts from the area. Charlie liked the interactive exhibits. She repeatedly played the same track about spiritual music. Fortunately, we were the only ones touring the mansion at the time.

After the museum, we went to Bark Camp Lake. The lake was lovely. However, we did not get to stay long because Charlie had an issue. She would not let go of my leg and screamed, “Mommy, mommy, mommy!” We assumed she was just tired and headed back to the cabin for a nap. But, we realized later that her stomach was bothering her.

We wrapped up our week by riding the ski lift and revisiting the Natural Tunnel. We retraced our favorite sights and activities.

There were moments that don’t fit into this narrative such as rocking on the back porch while watching a quick down pour. Or, cooking out with friends (during the couple of nights they joined us) until late in the evening. And, gazing at the most stars I had ever seen each clear night.

10614411_10101893490037659_2810308428759719378_nAfter a week like that, I am fighting back tears now that we are home. It’s not so much being home that is upsetting because we live in another beautiful area of the state.

Instead, it’s the thought of returning to our normal. Back to arguing with insurance, back to navigating a confusing and overwhelmed medicaid waiver system, back to answering people’s questions about Charlie, back to patiently nodding at unsolicited advice, back to therapists making unrealistic home therapy suggestions, and back to sitting in countless doctors’ offices.

I live a strange polarity. I detest many of the things in my daily life. However, I wake up each morning so grateful for the life I have.

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Checked Back In

Earlier this week, I realized I checked out at some point. I was preoccupied with a battle in my ongoing war with insurance companies, engrossed with the latest tasks involving Charlie’s feeding struggles, and busy with the daily therapy routines. Indeed, I had checked out. I was running on auto pilot and oblivious to the outside world.

Fortunately, there are days, like today, that accidentally come to my rescue.

napI almost didn’t go today. I had a list of excuses. My back hurts, my asthma is flaring up, I’m tired, there will be too many people on the road, and just about every other conceivable reason not too.

Last year, when Charlie, my husband, and I visited Chippokes Plantation State Park, we made the mistake of not planning enough time for the visit. Since then, I have wanted to return to do the things we didn’t have enough time to do during our first visit. Last month, I marked today on the calendar as the day of our return.

I watched the date creep up and thought about procrastinating. “The park will always be there”, I told myself. “We can go at any time.” My list of excuses circulated through my head over the last week.

Despite everything, last night, I made the decision to follow through with my plans.

I’m so glad that I did.

swimThe weather was perfect when we pulled into the park. There was a cool breeze in the air as we ate our picnic lunch in the shade by the river. It was nice but I was not that easily convinced I made the right decision.

After lunch, we followed a trail to the historical section of the park and spotted a snake swimming in the river. We were escorted the length of our walk by Zebra Swallowtail Butterflies. Charlie heard frogs croak for the first time.

OK, so maybe leaving the house was a good plan.

At the Farm and Forestry Museum, a barn cat hung out in the rafters, baby birds nested in an overhang, and… a bunny! It was official. I was smiling.

Things continued to look up throughout the day.

Charlie tailed a woman walking a beagle and wandered up to a man playing a violin. She laughed and clapped as he played. A park staff member offered Charlie a ball to play with. She gleefully bounced the ball and chased it over and over. It was tough to leave the spot to go for a swim.

pigFollowing the swim, Charlie napped in the shade and quiet of a garden while her dad took a mansion tour.

We concluded the day trip by visiting pasture animals as the park staff fed them.

I go through stints where the noise, chaos, and uncertainty of my world is too much. I feel defeated. My natural reaction to this is to shy away from people and unnecessary outings. It’s a survival mode I’m all too familiar with.

Honestly, I am not sure why I decided to go today.  But, I’m thankful I didn’t miss out. Today was precisely what I needed. I’m not up to 100% yet but, I have checked back in.

The pictures on the left were taken at the park last June. The pictures on the right were taken today.

The pictures on the left were taken at the park last June. The pictures on the right were taken today.


The Week of Two

two_edited_editedLast week, Charlie turned the big 2. For the non preemie parents who may read this, two is the promised finish line. According to NICU lore, preemies “catch up” (meet age appropriate milestones) by two. The preemie’s age is no longer adjusted to account for the premature arrival. That’s it, poof, the baby is just two.

Two is a pretty big birthday in the preemie realm. However, the birthday was not the prophesied finish line for us.  The finish line moved further ahead and our marathon continues. I’ve become content with that.

Yet, last week was a very emotional week.

It started the night I wrote Charlie’s birthday post. In between my stifled tears and keyboard clicks, I opened an email. Charlie received an amazing birthday card of sorts. People we had never met wished her a happy birthday. For once, I was at a loss for words.

Later in the week, I received call from a friend who procured team T shirts for our March for Babies team. When we made plans for the walk, I mentioned how we were going to be a shirtless team. She surprised me by coming up with shirts at the last minute. She expressed concern over odd sizes and mismatched colors. I thought they were perfect.

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Charlie and I went hiking today.

On Saturday, our team lead the March For Babies walk in our area. Last year, we had four team members. This year, we had fifteen and raised over $1500.

I had no idea that this week or this march meant anything to anyone other than me.

I cried quite a bit this week. It was not because Charlie didn’t catch up or that two isn’t the promised end for us. It is because I am honored, in awe, and am grateful for the kindness and love given to us this week.

Yes, we missed out on yet another thing that “should have” happened. But, rather than focus on what didn’t happen last week, I prefer to notice all that did.


Spring Fever

The weather has been nice this week. I believe Charlie and I have a bad case of spring fever. She asks to go outside and I happily oblige.

During the two hottest days, she played in the Shenandoah River. She cried each time she had to come home.

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Today, she explored the state arboretum for the first time out of the stroller.

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The week has shown me what a huge difference a year makes. This time last year, she was unable to sit without support and we wondered if she would be able to walk. She may not “catch up” by two, but she has come such a long way. Go Charlie, go!

Charlie one year ago.

   Charlie one year ago 

Charlie now

Charlie now


Happy 21 Months Charlie!

Charlie is twenty one months old. Since February has only twenty eight days, I suppose she was officially twenty one months yesterday. However, we celebrated today by visiting Twin Lakes State Park (our twenty first for those of you counting). As I crossed today’s park off the list, I saw all the other parks we have checked off. I reminisced about each adventure.

That is the kind of thing I hope I remember about Charlie being a baby.

These are some of the memories:

One of Charlie's first hikes at Mason Neck State Park.

One of Charlie’s first hikes at Mason Neck State Park. I can remember how crisp the fall air was that day.

Cooking out in the middle of November at Staunton River State Park. The people who drove by just stared. Especially after we set up the ladder ball game.

Cooking out in the middle of November at Staunton River State Park. People drove by and stared. We ignored them and set up the ladder ball game.

This is when Charlie and I hiked our hundreth mile together.

Charlie and I hiked our hundredth mile together.

The gorgeous winter day at Kiptopeke State Park on the eastern shore.

The gorgeous winter day at Kiptopeke State Park on the eastern shore.

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Not wanting to go home after Kiptopeke, I added First Landing State Park to the itinerary.

The very first time Charlie put her feet in a natural body of water at Shenandoah River State Park.

The very first time Charlie put her feet in a natural body of water at Shenandoah River State Park.

The first time Charlie played in the rain at James River State Park.

The first time Charlie played in the rain at James River State Park.

Charlie swings at Chippokes Plantation State Park. Whenever I see those pictures, I remember two things: How incredibly humid that day was and I can't wait to go back to that amazing park for a longer visit.

Charlie swings at Chippokes Plantation State Park. Whenever I see those pictures, I remember two things: How incredibly humid that day was and I can’t wait to go back to that amazing park for a longer visit (it has been one of my favorites so far).

The time at Douthat State Park when Charlie decided that she wasn't close enough to the lake and crawled in.

The time at Douthat State Park when Charlie decided that she wasn’t close enough to the lake and crawled in.

At her second visit to Lake Anna State Park, she walked in the sand for the first time and love it.

At her second visit to Lake Anna State Park, she walked in the sand for the first time and squealed with excitement.

She kept waving and saying, "Hi" to everyone we passed at High Bridge Trail State Park.

She waved and said, “Hi” to everyone we passed at High Bridge Trail State Park.

Today at Twin Lakes State Park, Charlie showed off her playground skills. She clapped quite a bit. I am not sure if she was expressing her excitement, if she was proud of her self, or both.

Today at Twin Lakes State Park, Charlie showed off her playground skills. She clapped quite a bit. I am not sure if she was expressing her excitement, if she was proud of herself, or both.

I don’t want to remember all the injections, feeding problems, diagnoses, fights with insurance, and seemingly endless therapy. When I think about Charlie’s beginning, I want to smile. Now, I see there is a very good chance of that happening.

Happy twenty one months Charlie Bear!

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Woodland Creature

Yesterday was the first day of a photo contest in which I entered a picture of Charlie. While I campaigned for votes, I talked to friends that I hadn’t spoken to in a while. There isn’t a good reason as to why I had fallen out of contact. I suppose it is a part of life (more specifically, special needs life) that it happens. With each conversation, I was reminded of how fortunate I truly am.

Contained within my smorgasbord of friends there are:

The friend that revealed her experience with a late walking daughter to help me feel less alone.

My show going guy friends (more like brothers) from my twenties that are now scattered across the globe but don’t hesitate when they are needed.

The friend that came to see Charlie at her sickest (without being asked) when I had stopped asking people to visit because no one would.

Our old neighbor who visited several times during Charlie’s NICU stay and has always been a friend.

The couple that visited me in the hospital before Charlie was born, while Charlie was in the NICU, and continue to socialize with us regardless of our baby in tow.

There are the friends from my past that good-naturedly voted without a second thought.

The couple that included a stop to visit pregnant me in the hospital in their itinerary while in town and have been there for us ever since.

One of my newest friends, a CP mom, that assists in problem solving and listens patiently because she knows exactly how it feels.

My friend that will let me vent for as long as needed, is not afraid to say “That stinks”, and will laugh with me about life afterwards.

The friend who told me I was the sister she wished she had.

My preemie mom friends that are quick with understanding and encouragement whenever needed.

The amazing women in my moms groups who have their individual strengths and are a force to be reckoned with collectively.

And there are many more that cheer for us and Charlie.

At first, I wasn’t sure I wanted to enter the contest. Quite honestly, I have become afraid to hope for things. However, I’m glad I did. Not merely because I want to win (which I really do and we are so close to first). Rather, I was reminded how lucky I am to have so many incredible people in my life. Unfortunately, sometimes I make the mistake of forgetting this as we go about our daily lives.

1238743_10101493155581119_1602306659_n This is the picture of Charlie titled Woodland Creature that I entered into the contest. It can be voted on by clicking vote here.


Snow Baby!

Charlie played in the snow for the first time yesterday!


Even Mama Needs A Day Off

Today, I turned off my cell phone, left Charlie at home with her dad, and went for a hike. I needed an afternoon to myself.

kaia hikesUnfortunately, the state park was unusually crowded today with many types of people. On crowded days,  I try to guess the story of the groups I come across. I  typically encounter a variety of people. Most frequently, the groups are what I refer to as the family with small kids, the young dating couple, the nature lovers, the photographers, the gear heads, and the workout enthusiasts.

My favorite is the family with small kids. I can’t help but laugh when I hear: “Look mom!”  “Put that down! No! Don’t put that in your mouth!” or some other variety of young kid mischief. The most baffling are the gear heads. I want to ask why they need to carry walking sticks, a camel back, a day pack, safari hats, and wear zip off pants if they are only going for a few mile hike? I am impressed by the work out enthusiasts. They are the ones who run past me UP the mountain while carrying only their car keys.

While I think it is great that so many people are getting out and enjoying the state park, by doing so they were infringing on my alone time. I dug my headset out of the car and listened to music to solve the problem. Once again, I was in my own little world.

I know, I know… I missed out on the sounds of nature. However, I also avoided hearing the sounds of others’ conversations, kids yelling, and so fourth. Besides, now that I live on top of a mountain nature, comes to my back door.

Kaia and I hiked up a difficult rated trail and back down a more scenic moderate rated trail. The afternoon turned out to be pretty relaxing. I feel rejuvenated for whatever the up coming week throws my way. Additionally, I hope that it is the beginning of daily walks for me.

On a side note, I should mention that Prematurity Awareness Day is a week from today.

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This was a gorgeous view. However, Kaia was tired of taking pictures and refused to cooperate.


Fall Fun

Charlie played in the leaves for her first time yesterday. Her reaction was a mixture of excitement, hesitation, and slight intolerance. She did not like the feel of the leaves. But she loved that they drifted on the breeze and made a crackling noise. Kaia also joined in the fun. Overall, it was a short and sweet adventure.

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Visitors

Today, friends from Colorado were in-state for a visit. The weather was rather warm for our meet up at a state park (that makes sixteen!). After a short play date, Charlie, Kaia, my husband, and I took a walk. It was followed by a splash in the lake. Her enthusiasm for digging in mud and splashing (she placed herself in the lake) is vast improvement from the first time she played in the river earlier this past spring. Overall, there has been remarkable progress with her sensory issues.

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At home this evening, Charlie was all smiles for feeding therapy. We did not get a lot of therapy done but we laughed quite a bit (which is just as important).

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Apple Picking

Last year, we went to pick apples. It was the first time we had taken Charlie out after she came home from the NICU. Although the trip was short and simple, it had a lasting impact on our lives.

Charlie had been home approximately a month when we first went apple picking. Around this time, we decided that our lives in Northern Virginia were no longer going to work. Additionally, the isolation and precautions Last Yearrequired of post NICU life were wearing on me. To get away from it all, we decided to pick apples about an hour away.

After we arrived at the orchard, my husband was so nervous to have our baby out of the house that he worried about everything. I remember that the gentleman who took our family picture (first ever!) in the orchard asked us how many hours old our baby was.

Regardless, we had a fabulous time. We picked apples, had ice cream, and ate caramel apples under a sunny sky. I felt like we had broken out of prison.

On the drive back, we started discussing the possibility of moving away from the DC metro area. Additionally, we examined ways in which we could be better prepared while traveling with a baby.

Family pic

This year’s family portrait.

The short trip had provided me with the confidence I needed to journey out of the house with Charlie in tow (to some where other than a medical appointment).  At Charlie’s following appointment with the pediatrician, I asked about the recommendations and requirements to keep Charlie healthy while traveling out of the house. Our trips escalated from then on. We started traveling further out and for increasing amounts of time.

A few months later, we moved away from the DC metro area.

Today, we went back to the same orchard to pick apples (we live fifteen minutes in the other direction from it). This time, we were pros.

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Maintaining Sanity On Lockdown

RSV season is just around the corner for us. Surpisingly, we do not dread the “lock down” required to keep our baby’s lungs healthy (RSV 101 can be found here). Last year, we managed to have a good time while keeping Charlie healthy.

sledteam1Charlie came home from the NICU shortly before RSV season. At a pediatrician’s appointment, I bombarded the doctor with questions about safe activities during RSV season. I asked if it was OK to take her outside. What temperature was too cold? How should I dress her? I rattled off ideas and strategies. Some things were encouraged while others rejected. I asked questions until I understood the rules, limitations, and health concerns of RSV season.

It was not easy at first. But, we managed to have fun while remaining with in the recommended guidelines.

We tapped into our creativity and tried new adventures. The internet and tourism literature is full of ideas. Basically, we went places where other people were not. For example, we looked for locations in the “off season”. By employing this strategy, we discovered our state parks system.  In addition, we embarked on scenic drives, road trips, or hikes.

We became masters at problem solving. Anytime we encountered an obstacle, we figured out a way to overcome it. We stocked bottles of sanitizer and disinfecting wipes everywhere (in the stroller, in our bags, in the car, in the diaper bag, in our pockets). We purchased a jogging stroller to which our infant seat attached and became quite adept at pushing it up and down mountain trails. We figured out how to sterilize bottles and boil water while out on the road.  We devised plans for dealing with every worse can scenario we could imagine. sled team_edited

The idea of leaving our sterile home seemed a little overwhelming at first. We started small. We went apple picking forty minutes away. Our adventures grew as did our confidence. For us, the hassles of adventuring with a former preemie outweighed the boredom of locking ourselves up at home. Looking back, I realize that we had created some really nice memories while maintaining our sanity.

I have begun collecting ideas and constructing plans to keep us busy during this year’s season. I want more than for us just to get through it. Once again, I would like for us to have a blast doing it.


Happy 4th of July!

Charlie’s first Fourth of July out of the NICU 🙂

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A Day In The Park

Charlie cut her first tooth last night!

After a crazy night, we visited James River State Park. It was our thirteenth Virginia State Park. Charlie was busy playing most of the morning and early afternoon. Because she and I were alone, I did not get to take many pictures.

These are the pictures that I took…

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There was a kids’ exploration area. Charlie practiced her standing (as suggested by the PT yesterday) in the stump garden. She also played with the drums, climbed on the logs, and played in the sand pit that was in the kids’ area.

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She had her first fudgesicle and impromptu feeding therapy.

We wrapped things up by playing by the river.

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One Third Complete

A few months ago, I had written a post explaining why Charlie and I started visiting our state’s parks. I am often asked if we are going to continue now that “lock down” is a thing of the past. Of course!

Due to our recent move and Charlie’s first birthday party, we had taken a few months off of our state park quest. Despite the hiatus in our travel to more distant parks, Charlie and I continued to regularly visit our local state parks. The return to our travel schedule reminded me of how much we missed it during our time off.

First, I miss the travel. My husband may vehemently disagree but I enjoy the travel as much as the destination. We see parts of Virginia that we ordinarily would not visit. We work together as we figure out how to navigate the back roads that often lead up to the parks. Each time I am awestruck by the varied geographic features we discover, the small towns we visit, and the people we meet. Before we started this, I did not think it was possible to have such surprising adventures in our home state. Growing up here led us to believe that we were omniscient of all things concerning this state. We could not have been more wrong.

Next, it is nice to make some positive and happy memories during a year that was so difficult. I will always remember singing Old McDonald in the car with Charlie and her dad. I will not forget the fun we have seeing a park for the first time, exploring it, and trying new activities.

It makes me laugh when I remember cooking out by a lake in late November or the reaction of people when they see us “off road strollering” for the first time. It has been interesting to see all the new activities there are for Charlie as she grows. She started out riding along on hikes in a jogging stroller and liked to look at the trees over head and hear the birds tweet. As she grows, we find fun ways to incorporate sensory play or work on her therapy goals. I have many memorable photos of her state park firsts.

I should conclude by making note that we are officially one third of the way through our quest. There are thirty six state parks and we have visited twelve. So far, the experience has been kind of like my college education. I headed into it expecting to get one thing out of it and have been delighted to discover that there is so much more to it. I think part of me may actually be kind of sad once we finish all thirty six. Even so, I am consoled by my husband’s considerations of a cross country car trip when Charlie gets a little older.

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There was a toddler playground at Chippokes Plantation State Park.

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Listening to the frogs in her stroller.

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Sensory play in the recycled material on the playground at Chippokes Plantation State Park.


Sensory Issues And The Beach

While Charlie’s sensory issues have made a vast improvement in the last year, there remains room for improvement. Yesterday was Charlie’s first time playing in the ocean and sand. We went to Kiptopeke State Park on the eastern shore. This is how her initial interaction went:

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She did enjoy things once she realized she could bang shells together.

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Traveling With The Circus

It is the time of year that many families go on vacation. Currently, I am in the midst of planning our next trip. In our situation, traveling with a former micro preemie presents its own complexities. I regularly find myself reworking and figuring out the minutiae. In addition to Charlie, I travel with our pooch (she’s the big sister) and a finicky husband. When everyone is packed in the car, I often feel like I am traveling with a circus. Despite the complications, we have so much fun that I would not have it any other way. The success of the trip (and my sanity) is contingent on preparation and planning.

First, a destination must be chosen. This task is usually left to me. I try to incorporate an aspect that my husband is interested in, something I want to do, make sure the trip is baby appropriate, and is dog friendly. This seems more difficult than it really is. With some ingenuity and thoughtfulness, each family can find a destination that is right for them. I will explain what works for us. There is a set of questions that I ask myself when I try to decide if a destination is baby appropriate. Will having a baby present detract from other peoples’ enjoyment? If Charlie acts up, can I quickly remove her from the presence of others to minimize disruption? Can Charlie actively participate and be enriched by chosen activity or destination? Additionally, the length of the trip is important. We usually schedule a long weekend trip because that length works the best for us. I have found some advantages to be that my husband’s vacation days are used sparingly, we can take many trips through out the year, and we do not become exhausted.

Next, we have a tight budget like many families that have kids with special needs. Things like OT, PT, speech, home health nursing, music therapy, and hypoallergenic formula do not come cheaply.  Five star resorts and room service are memories of my pre-baby life for now. My husband does not enjoy camping and can be picky when it comes to accommodations which forces me to find a balance. We regularly use two national chains (we have a third one as back up) that are pet friendly, clean, smoke free, comfortable, safe, and are reasonably priced. We aim to get rooms that have a mini fridge and microwave. This saves us cash on drinks and snacks (a microwave sterilizer is an easy way to sterilize bottles on the road). We love grilling, cooking out, and picnicking where we further save on food costs. With some creativity, money can be saved on vacation activities as well. We are fans of our state’s diverse park system and invested in a yearly pass. We have ocean beach access, mountain hiking, lake access, river access, and historical places within short drives for next to nothing. Even though our pass is six months old, we have not grown bored or run out of ideas of places to visit. It was definitely a good investment for us.

Third, we have to accommodate Charlie’s special needs. I have found this to be trial and error. The first time I packed too much of some stuff and failed to consider other things. As Charlie grows, her needs change and I must adjust accordingly. However, there are a few rules that have remained constant.  I ALWAYS carry a sealed plastic bag containing medical information in Charlie’s diaper bag. It contains her discharge summaries, her doctors’ names and phone numbers, her medication list and dosages, her allergies, and any other pertinent information at the time. Next, I prioritize packing her specialty items (not readily available in stores such as meds, medical equipment, and special ordered necessities) and plenty of them. I try to have enough for two days longer than our itinerary. Then, I familiarize myself with the medical facilities of where we are traveling. Is there a major medical facility close to where we are traveling? What would I do if Charlie needed urgent medical care? It is reassuring for me to know our options should we (hopefully not) need them. Finally, there are the special considerations that can not be packed. In the past, we needed boiled water (electric kettles are great) and a way to sterilize bottles (microwave bottle sterilizers work well). In that case, we preferred hotel rooms with full kitchens (there are reasonably priced chains that provide full kitchens).

Lastly, remember that traveling with the family is meant to be fun. Once all the preparation and planning is done, relax and enjoy the ride. Use knowledge gained from prior experiences to prepare for future endeavors. If a big trip seems overwhelming, start small. For example, try an overnight trip that is a short distance from home to build confidence and get ideas. Our travel plans are never executed flawlessly but we have learned to deal with issues that arise. Sometimes, we encounter unforeseen hassles or frustrations.  Nevertheless, I love traveling with my circus.

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This photo was taken on our first family overnight trip. There will be more pictures to follow. We have several trips scheduled this summer.


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