Monthly Archives: September 2014

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.

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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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