Category Archives: Activity

Baby Clothes

Out of everything, baby clothes have held a special place in my parenting world. Not only did Charlie’s birth entail numerous losses, but there were very few parenting choices that I got to make. What Charlie wore was the only thing that could still go the way I had imagined it when I first got pregnant. I clung to my idea for her wardrobe fiercely.

Anytime Charlie out grows a size, I pick out the clothing pieces that mean something and place them in a drawer. The pieces in the drawer will be incorporated into a quilt one day. The rest of the clothes get dumped into a trunk in the basement and forgotten. Each time I add to the trunk, I tell myself that I will deal with it at a later date.

You may wonder how clothes can mean something. Also, you may find yourself asking why I needlessly store (OK, hoard) baby clothes in the basement.

I will begin with the easy question. Many of Charlie’s old clothes are significant to me because they have important memories attached.

2eede0d5 (1)

The last day she wore her “Sweet On Mommy” onesie.

For example, there is the preemie sized onesie she wore in the NICU that said, “Sweet On Mommy”. Each time she donned it, I marveled at the fact that I was the “mommy” it was referring to.

Also in the drawer, there is a size zero to three month sleeper with pink cats. One of my husband’s coworkers gave it to us the week Charlie was born. I remember when I first saw it. I held it up and couldn’t imagine my baby ever being big enough to fit in it. The day came during the week of the presidential election. I tried it on her after a bath and sobbed because it finally fit.

In fact, I was still crying when I investigated a knock at the door. I opened it to find Obama supporters who were canvassing the neighborhood in an effort to encourage votes. I am sure they wondered what the blubbering lady carrying a baby was about.

These are the kinds of clothes that occupy the quilt drawer. In the not too distant future, I will make a quilt using these clothes. Additionally, I plan on sewing the patches I’ve collected at each state park on to the quilt.

I don’t think I ever had a plan for the clothes in the basement. I wanted to donate them. But, I needed the donation to mean something to me. I knew it was not simply a matter of dumping giant garbage bags at the local Goodwill. Those weren’t just any baby clothes. They were Charlie’s clothes. They were my solace. They deserved better. But what?

This week, Preemies Today put out a request for gently used preemie and newborn sized clothes for a NICU baby shower this Sunday. I decided this was it. I was ready. It was time to deal with the clothes.

Tonight, I sorted through the clothes and selected my donations. (Basically, anything in the requested sizes that didn’t carry a significant memory and wasn’t stained.) It felt like an archaeological excavation. Each piece of preemie and newborn clothing was like an artifact from a lifetime ago. I shuffled around my selections for the quilt drawer and washed what was to be donated.

These clothes have served us well. It’s time for them to comfort another NICU family. And, perhaps, become a memory worth saving.

IMG_2108

Advertisements

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


Here Comes Santa Claus (and Charlie)

Charlie did really well with the MRI on Monday. By the afternoon, she was feeling well enough to bowl.

Despite my high level of anxiety, the procedure went smoothly. First, she was given an oral medication to help her relax. She acted silly, laughed excessively, and played peek-a-boo with anyone who made eye contact. Afterwards, she was wheeled back and given anesthesia via gas. According to the nurse, Charlie counted down with the anesthesiologist before falling asleep. Once she was asleep, an IV line was put in and her airway was protected.

The MRI took a little over an hour. She slept soundly while she recovered from the anesthesia. Afterwards, she was very thirsty and recovered quickly. We should receive the results soon. 1380601_10102086778655719_168898052343210150_n

That afternoon, she felt well enough to bowl for her very first time.

Our week has been going well as we get ready for Christmas. Today, Charlie visited with Santa for the first time ever. She was afraid of Santa the past two years and had no interest in meeting him.

Charlie was excited as she stood in line. However, when it was her turn to see Santa, she was not so sure about things. But, she held it together while her picture was taken. Mostly, she was pleased with the candy cane she received afterwards.

10401938_10102092600663369_9037295688111460974_n

 

 


Count Down To Christmas!

10419604_10102063648274189_1788056368319517666_n

We watched the Polar Express together.

Friday night, we bought and put up our very first Christmas tree. Charlie was an enthusiastic participant. In addition to the tree, I hope to make gingerbread houses with her between now and Christmas. This is the first Christmas that she is able to actively participate in holiday themed activities. We are enjoying the novelty of it all.

During the tree assembly, Charlie shifted her focus between helping and running around the living room. At one point she babbled, “Mommy, mommy, mommy, I love mommy.” as she ran towards me. Stunned, I asked my husband, “Did she just say ‘I love mommy’?” He confirmed that, indeed, she had said it. It was the first time she verbally said that she loved anything.

I am counting down to Christmas despite the busy December.

Last week, Charlie was measured for Supra-Malleolar-Orthosis (SMOs). They are a smaller and a more conservative version of the AFOs she wore last year. The orthotics barely rise above her shoe line.

The SMOs were prescribed to correct her pronated feet, help her walk better, and will, hopefully, discourage toe walking. If she continues to toe walk, she may end up with hinged AFOs. She will get and be fitted for her SMOs in the upcoming weeks.

Next week, Charlie has an MRI scheduled for which she will be sedated. The MRI does not bother me, but the anesthesia and accompanying intubation does. I am a nervous wreck. Logically, I know it’s not a big deal and she will be fine. However, emotionally, I am terrified. There is not much I can do but have faith in my logic and trust Charlie’s doctors and nurses.

Nevertheless, this week, I may try to squeeze in a little extra quality time.

1486718_10102069573295399_4877968249251664842_n 10805783_10102069574817349_8933528143261829974_n (1)

 


Charlie Loves Gymnastics

Charlie was invited to a gymnastics themed birthday party. “How fun!” I thought when we received the invitation. I wasn’t sure how Charlie was going to participate but I knew she would enjoy it.

The party was Saturday. Charlie was the smallest of the preschoolers that ran through the gym while the instructor set up mats. The other kids seemed bigger, possibly older, and had a more advanced skill set. To top things off, Charlie fell on her face before things even really began.

I assumed I would have to help Charlie participate. I was mostly wrong. After I helped her with hand over hand direction during the warm ups, I stood beside Charlie as she waited in line behind three other kids. In turn, each child ran down a mat, jumped on a trampoline, and performed a somersault on a sloped mat (all with the instructor and her assistant on stand by to help).

Charlie watched the kids before her and was ready for her turn. I said, “Go Charlie!” and held my breath. She ran down the mat, stepped up on the trampoline, jumped in place, moved to the sloped mat, and performed a somersault. Afterwards, she clapped for herself and ran towards me.

“Do you want to do it again?” I asked. ” ‘gain!” She yelled back.

I stood beside her in line, but it was unnecessary. Charlie seemed to understand the concept of the line and waiting her turn. When she was up front, she expertly raised her hand to let the instructor know she was ready. The instructor responded with a raised hand. I whispered, “Go!”

Charlie squealed with excitement the entire sprint down the mat. The instructor helped her on to the trampoline and off again after several jumps. Charlie decided to log roll instead of somersault down the sloped mat. Next, a low balance beam was added to the course. Charlie counted her steps on the beam as she held the instructor’s hand. Like before, she proudly ran back to me and blurted out, ” ‘gain!”

Charlie enthusiastically performed the routines over and over again. Each time she laughed, clapped, and squealed with excitement. She loved this party.

I found out afterwards that Charlie could attend a half hour class for five dollars. Today, we gave the class a shot.

Charlie enjoyed today’s class as much as the party. The instructor and her assistants seemed to understand where Charlie is skill wise and provided assistance as needed.

There was one little girl in her class whose mother worked intently with her on each element. She performed each step expertly and will probably go on to compete in gymnastics. That is most likely not in the books for us.

For me, my goal is simple. I wanted Charlie to have fun. If she learns to follow directions, learns to wait her turn, and grows stronger, that’s all a happy by-product.

I have a new favorite Sunday afternoon activity. It is watching Charlie squeal with delight as she runs towards her next tumble.

100_1261

I was unable to take pictures during gymnastics class because I had my hands full. This picture is a leaf she found while we were on a walk.

 

 

 


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.

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.

When Elmo met Pooh.

 


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.

10703589_10102004454518949_6969825012495033811_n 10615341_10102005405423329_8698749048458273338_n

10616586_10203077180952813_4556864670576883004_n 10169432_10102004459853259_3160710864805255727_n

 


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?


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.

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.

1453350_10101950823341259_9180193376241819998_n_edited

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.

1743486_10101952861232309_1746776597342038388_n (1)

 


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.

284071_10100763182517989_2042550072_nAfter 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.

1235929_10101291099453219_1165663090_n

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.

10710941_10101947161654309_328738628555978193_n

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.


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!

10672263_10101929074406299_6421064225115772922_nTonight’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.

10403221_10101923606868289_9214998686602344817_n_edited

Charlie attended a birthday party last weekend.

 

 

 

 

 

 


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.

10647227_10101903095153929_8167556230138923618_n 10468625_10101903096351529_6621133360123779275_n

 


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.

vac1


Hello Elmo!

preemie hugsActivity two of the week completed! Yesterday, we made the pilgrimage to Busch Gardens so that Charlie could meet Elmo. The trip turned out to be everything I hoped it would be.

I was surprised there was so much for her to do. She saw the live show twice, met all the characters, rode several rides, played in a playground like area, and splashed on a splash pad type area.

There were a couple of moments I had to fight back tears. There are a couple of reasons why:

1) We are so fortunate Charlie is here to share in a day like yesterday (or any day) with us.

2)Charlie has worked and fought harder than I can possibly imagine. Nevertheless, she is full of joy, enthusiasm, and is almost always smiling. To see her have a day like yesterday was incredible.

It’s true, she probably won’t remember any of it. But, yesterday, her world was as magical as she makes my everyday.

Busch3

 


Charlie’s Big Week Ahead

Charlie doesn’t know it but next week is a big week in her world.

First, we are taking her to see her favorite Sesame Street character, Elmo, at Busch Gardens. I wanted to take her to see Elmo since the weather warmed up. Things such as schedules and finances finally worked out so we can take her this upcoming week.

I would be lying if I said I wasn’t excited.

10386759_10101741421309609_7489998055083846864_n

Next, Charlie is being freed from her crib. I want to say she is moving to a big girl bed. In reality, she’s having the front rail taken off of her crib to make a toddler day bed.

Most of my friends have posted on Facebook the day their kid first climbed out of the crib. I planned on keeping Charlie in her crib until she reached that day.

However, Charlie keeps getting stuck in the bars of her crib as she tries to get out. Nap time is frequently interrupted by Charlie’s desperate cries for help. She finds new and inventive ways to become trapped.

A couple of times, I considered breaking a bar to free her. Charlie hasn’t realized that, try as she might, she will not escape the crib through the bars.

Part of me is a little sad that we don’t get to have that moment of when she does finally climb out of the crib. The sadness is short lived because my mind is busy figuring out the logistics of this change.

I have additional concerns on top of those concerning bedding and Charlie staying in bed. Her room, although currently childproof, will have to become Charlie proof. She likes to pull the clothes and diapers out of her drawers, dump the laundry basket, and carry out whatever other mischief she can invent. Her room will be rearranged.

Next week is a big week for Charlie. I can’t wait to see how it all plays out.

10552533_10101822132987759_2925008518101329650_n_edited

Charlie visited Sky Meadows State Park today and enjoyed the gorgeous weather.


Hard At Work

I’ve had my hands full dealing with insurance companies, medicaid waivers, and doctor’s orders. Once I get everything figured out I will post what worked for us and what didn’t.

In the meantime, my distractions have not prevented Charlie from making the most of her summer.

10402685_10101793232354859_4773395389469493526_n 10313420_10101793232230109_8266399627852888316_n

10290639_10101793231761049_3526231677844760618_n chuck e


The Power Of Photos

I’m one of those moms. I take a few minutes in the midst of the action to snap photos. Some people may find it annoying. Others, comment that I’m not really enjoying the moment if I’m busy taking pictures. To the former, I apologize and to the later, I beg to differ.

Photos are my way of capturing memories. You’ve probably noticed from my photos, I don’t worry about lining up the perfect shot or finding decent light. I pull out my cell phone in the moment and snap several pictures for a minute or two.

At least, one of those pictures will turn out. The memory of the day will live on with my memento.

bearcreeklakeFor example, when I see the picture on the left, I’m reminded of the first cool, crisp autumn day of last year. I remember how Charlie laughed at the sound the lake animals made as they splashed through the surface. The picture is a reminder of the ranger who paused with a surprised expression when he noticed our unusual approach to hiking. It was one of her last hikes in the infant seat attachment.

Similarly, I have countless photos that take me back to another time and place. Photos have the power to jog our memories of things that may otherwise be forgotten.

In the NICU, I wondered if it was “right” to take pictures. Did I want to remember my baby like this? Was it right to photograph a sick baby?

Day of BirthAt first, I took pictures because I wanted people to see my baby. We didn’t have many visitors and the pictures were a way to proudly announce her arrival.

Later, I started to take pictures for my scrap book (our NICU offered a scrap booking class). I’m so glad I took those pictures, for two reasons. Now, I can see how far she has come. And, if we had lost Charlie in the NICU, we would have had some pictures to remember her by.

What’s not in pictures can also be a reminder.

Unfortunately, there are only a couple of pictures of Charlie and I together in the NICU. There was no one to take them. It reminds me of what an incredibly lonely time it was.

I regret the pictures not taken.

So yes, I am one of those moms who snaps what may be too many pictures. However, the reason for the photos is not to “one up” my friends on Instagram or have the picture perfect life on Facebook. It’s because this is the only baby experience I will ever have and I want to remember every possible bit of it.

I took a lot of pictures at the fountain yesterday.

I took a lot of pictures at the fountain yesterday.

 

 


%d bloggers like this: