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.

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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.

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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.

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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.

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Charlie attended a birthday party last weekend.

 

 

 

 

 

 


One Of The Many Reasons Parenting Magazines Are Not Relatable To Me

Maybe it was because last night I had one of those nightmares in which I was pregnant again. Or, it may be because I know too many women who have lost their babies. Whatever it is, I was turned off to find an article titled “How Social Media Is Giving My Pregnancy Anxiety” in my Twitter feed.

I’ve written before how I don’t relate to the articles in parenting magazines. I’ve had a distaste for them ever since a particular one repeatedly arrived unsolicited in my mail box to explain the exciting things occuring during my pregnancy long past the time my pregnancy was cut short.

I suppose I don’t find the cloth diaper or breast feeding debates interesting because I didn’t really have a choice in either (and I couldn’t care less what other people do). Despite Charlie doing well, I can’t pretend that I fret over what kind of preschool she should attend or the latest (and trendiest) toddler activity.

I wanted to give the author and the title the benefit of the doubt. Maybe the author was concerned for her pregnancy because of all the awareness posts regarding  premature birth and pregnancy complications. I clicked on the link hoping to find some mention of all that.

Nope. It was concern over whether her baby shower would be Pinterest worthy and the appearance of Facebook photos. Once again, another parenting article that I found to be not relatable in the very least.

I don’t understand the whole parenting magazine or website thing. Most of the articles I come across are of no interest to me. However, I do wonder if they would be more appealing had I had a healthy pregnancy and carried Charlie to term.

I simply want to enjoy the time I have with Charlie. One day, I will look back on this time as the best years of my life. I don’t need validation of my parenting ability or do I desire to be the best parent. Secretly, I think we are all messing it up in some way and that’s OK. But, you know what? To Charlie, I’m the best mommy there is and that’s what matters to me.

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The Steps Back

10632804_10101908364064989_7657235980990242876_nCharlie has made so much progress, it’s only natural she would take a few steps back. This was the week for back sliding and hassles.

Earlier this week, Charlie had her medicaid waiver eligibility interview. It did not go as well as hoped. Unfortunately, the medicaid waiver that applies to Charlie has a ten year waiting list. Although I still cling to hope that all this will be a memory in ten years, we are getting on the list.

Later in the week, Charlie had a follow up with the gastroenterologist. There is some question as to what is going on in Charlie’s GI tract. To find an answer, she will have an upper GI. If that is unremarkable, she will have an upper endoscopy. Following the appointment, Charlie went to the splash park.

10419984_10101908363800519_4688971542622721905_n_editedFinally, we gave the big girl bed experiment a valiant effort. However, Charlie is not ready for it. Yes, she got out of bed and wandered around her room. That was not the problem. The problem is that she banged on the walls and door incessantly.

Initially, it wasn’t a problem. We ignored it and eventually she went to bed somewhere on the floor. However, the intensity of the pounding increased until she bruised herself. With her high pain tolerance, her dad and I became concerned she may accidentally hurt herself.

Replacing the crib rail was not an option because she gets stuck in the slats in her attempts to get out. For now, she sleeps in her play pen. It’s OK she is not ready for a big girl bed yet. In the near future, we will try again.

 


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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When Words Fail Her

I can only understand about 25% of what Charlie says. That is, if she says anything at all.

A lot of the time she grunts or “talks” with her mouth closed. Other times, it’s garbled gibberish. With context clues and effort, I can understand about 25% of what she says.

Tonight, my husband realized that all of those sounds have meaning and we can’t understand most of them.

Charlie was climbing on him and playing with a Little People’s tricycle. She rolled it up his arm, put it on his head, and exclaimed some garbled words. He dismissed them and continued flipping through the channels.

She repeated her gibberish over and over. He realized she was trying to tell him something. After asking her to repeat it a few more times, he deciphered she was actually saying, “It’s a hat!”

He was so impressed with her. But, at the same time, so saddened. He realized her thoughts and receptive language is fine. Her body (more so her mouth) will not do what she wants it to.

Although, I already knew this. It makes me sad as well when I think about it. I can’t imagine the level of frustration, isolation, and whatever else she may feel. I wish her fine motor skills were decent enough for sign language.

However, I try to remain positive and remind myself that she seems happy. The whole ordeal doesn’t really appear to bother her. She is one of the most joyful and enthusiastic people I know of.

Before she went to bed tonight, she said, “nigh” (good night) for the first time. Then, when I told her I loved her, she leaned in and kissed me.

I guess maybe she does communicate in her own way.

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We’ve been visiting Chuck E Cheese’s a lot lately. It’s an easy and fun way to work on most of her therapy goals.


All Quiet On The Royal Front

I haven’t had the urge to blog lately. I want to say it is due to lack of happenings. However, that’s not true. There is just as much occurring now as ever. Therefore, I think the change may be in me. Those big emotions are not stirred up on an almost daily basis. I may be settling into my normal.

Oh, insurance does not want to cover a medical necessity? I’m used to that. What’s that? The medicaid waiver process is a giant snafu? I kind of expected it. Are those people judging us as we go about our routine? Shrugged off. Another diagnosis? I saw it coming.

Don’t mistake me. Like anyone, some days are better than others for me. I do struggle from time to time. I continue to feel disconnected from the “regular” parenting world. But, those powerful consuming emotions are not an every day thing anymore. Maybe, more of a once or twice a week kind of thing.

The dust is finally settling after our world was rocked by Charlie’s premature arrival.

On a side note: Today was the first day that I looked at Charlie and saw a little girl instead of a baby. I don’t care what people say. This time did not fly by. It felt like the longest two years of my life.

I happily tossed out the bottles (she takes her formula through a sippy cup now). I was thrilled to take the rail off of her crib. I look forward to the (very far off) day without diapers.

Bye bye baby and hello little girl!

Taken earlier today.

Taken earlier today.


The Good, The Bad, And Charlie’s Hair Cut

The past week or so has been rather uneventful in our world. Nevertheless, there have been things to celebrate, things to curse, and well… Charlie’s odd hair cut.

The good things: First, the letter of medical necessity did the trick. Charlie’s insurance finally approved coverage of her formula. Second, this is the last week of my doxycycline prescription (which means I can safely endure sun exposure again in a few days). Finally, Charlie has been progressing forward in her skill set (most noticeably in gross motor skills).

The bad thing: The Medicaid waiver process was a nightmare that included lost files, lost applications, and an overworked social services office. But, it was nothing that an entire afternoon spent at the social services office couldn’t put back on track.

Charlie’s odd hair cut: Charlie does not like having her hair cut. She alternates between thrashing her head forward and backwards and shaking it side to side while saying “No, no, no, no!” I decided to just cut her hair at home after the first time she did this at the hair dresser and got a bad hair cut. For her last few haircuts, I cut her hair and it kind of worked.

Charlie’s dad wanted to see if he could do better. Even though I warned him, I don’t think he was expecting her dramatics. His first cut was a clump of bangs almost at the hair line. He was horrified. I laughed and reminded him that it will grow back.  Now, Charlie has extremely short bangs and will probably get professional haircuts from this point forward.

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Charlie went to the county fair this week. She had her first frozen banana and played in a baby pool filled with corn.


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.

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Charlie’s Big Girl Bed

It happened sooner in the week than I had planned. Yesterday turned out to be the big day. We took the front rail off of Charlie’s crib and transitioned her to a “big girl” bed. In addition, we moved everything out of her drawers into organizers in the closet as a preemptive strike on any “redecorating” by Charlie.

Late in the afternoon, her crib turned into this toddler bed.

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Charlie was thrilled to find Elmo covering a bed that she could easily climb into and out of. I’ve heard other mothers say they were sad when this day came. I can’t say that I share in the sentiment.

Our baby experience has been longer than average and exhausting. I feel relieved we reached this milestone. I am caught up in the excitement of a new bed for Charlie. Mostly, I find solace in moving one more step forward. We are inching closer to leaving all this behind.

 

 


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.

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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.

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


The Follow Up

Charlie had her follow up appointment with the developmental clinic yesterday. Other than having to wake up before dawn, the day went pretty smoothly. Overall, it was uneventful. I’ll take it.

Her assessments didn’t discover any new issues. The doctor discussed his ongoing concerns. As Charlie grows older, it is becoming clearer that apraxia is at the root of her speech and feeding delay.

However, her speech delay doesn’t stop her from socializing.

Tonight, she was at the kick off of a March of Dimes March For Babies campaign. She enjoyed meeting the area’s team captains.

She also enjoyed exploring the grounds where the walk is going to be held.

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Specialty Clinic On The Horizon

On Wednesday, Charlie will make the two hour journey for her follow up appointments (she gets reassessed in several areas) with developmental pediatrics. I admit, I am a little nervous. The past couple of visits to the clinic did not go so well for us.

I realize we are lucky and Charlie is doing really well considering her extremely premature arrival. But, I can’t shake the feeling that we should be done with all this. I’m kind of like a little kid pouting and saying to myself, “We weren’t supposed to have this challenging of a journey.”

For some reason, it was easier for me to accept the long NICU stay than it is the long period it will take Charlie to “catch up”, if ever.

Sometimes, I think I should stop hoping for the end of specialty clinic visits, regular insurance phone calls, and numerous therapy appointments. Because I hope, each follow up with the developmental pediatrician feels how I imagine a prisoner must feel before a parole board. I see the progress Charlie has made and dare to think, “It won’t be long now until we are finished with this.”

However, my hopes are shot down when a new area of concern is discussed or limited progress is pointed out. Often, I knew of the issue beforehand. However, I had anticipated it wasn’t a big deal. Or, I assumed it could easily be addressed.

Additionally, I feel guilty and greedy for wanting more. We are fortunate Charlie is doing well. That should be enough. I feel selfish for desperately wanting her to “catch up”.

I am not sure what is going to happen on Wednesday. Maybe that is why I’m already anxious and thinking about it. I have my fingers crossed it’s going to be a good appointment.

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Charlie visited Skyline Drive this weekend.

 


Charlie Stops For Nothing

Hectic is a good word to describe the past week. Over the course of the week, I’ve completed Charlie’s medicaid waiver forms, worked towards getting the insurance claim for the formula approved, and attended to Charlie’s usual busy schedule. Things were a little more difficult because I’ve been under the weather.

Despite the stress, I feel like there was much accomplished. Additionally, I decided to make some needed changes. Basically, I need to reapportion and move stuff around on my plate.

For the most part, the people in my world won’t notice the changes.  The biggest of which is that I’m cutting back on the frequency of my personal blog posts. I don’t feel the urge to post as often as in the past. Plus, I want to pursue to new interests and work on moving forward.

Of course, none of this matters to Charlie. She has been playful and active all week. I have no idea where this toddler gets her energy from.

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My Favorite Sound

Charlie joined me today as I picked through a clearance sale at the mall. She pretended she was looking for clothes and rifled through the racks beside me. After she became bored, she played peek a boo with anyone that looked her way.

A sales lady got sucked into a game of peek a boo with Charlie. As the laughter from both sides died down, the lady asked Charlie what her name was. Charlie smiled at the lady, fidgeted with her hair, squirmed, and remained silent. The pause in the conversation became uncomfortable. I jumped in and answered for Charlie.

The lady asked, “How old are you Charlie?” Charlie answered with babble. The lady looked somewhat surprised to hear a toddler babble. I disclosed, “She doesn’t talk yet.”

I’ve been cranky and exhausted from this past week.

I was too tired to explain Charlie’s early arrival. I didn’t have the patience to hear a stranger’s awkward remarks upon receiving the information. I was not in the mood to discuss diagnoses and how we hope she will one day “catch up”.

I just wanted to find some deeply discounted clothes and get out of there.

Speech, like feeding, is one of those skills that Charlie struggles with. The good news is that she is improving. While she continues to babble, Charlie now has twenty eight words.

Among those words are “hop” for help, “Melmo” for Elmo, bye-bye, eat, and happy. Sometimes when Charlie is having fun she repeats “Happy, happy, happy, happy, happy…” with a huge grin. I’m nearly brought to tears each time she does it.

However, Charlie started using my personal favorite word a few weeks ago… mommy.

Charlie learned to say her name a few weeks ago as well.


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.

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