Category Archives: How To…

Blogtober Challenge Day 5: Favorite Fall Recipe

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

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

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

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

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

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

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

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

Quick and Easy Quiche

Ingredients:

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

Directions:

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

Charlie eats her formula like a good eater.

 

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Three Great Sources To Find Toys For Kids With Special Needs

Charlie’s second birthday is approaching quickly. For the past few months, I’ve been on the look out for birthday gift ideas. Buying toys for Charlie is tricky. I suspect it is for many kids with special needs. Every child is different. There are different abilities, interests, therapy goals, and needs. In Charlie’s case, size is an important consideration. Here are three sources that have been helpful with generating ideas:

1)Toys R Us Toy Guide For Differently-Abled Kids: I’ve used this to find ideas for the past two Christmases. In addition to the online copy, they have a hard copy in the store. This handy guide is a great starting point from which to shop or build ideas.

2)Discovery Toys Special Needs Toy Guide: A Discovery Toys Educational Consultant was at the most recent March For Babies we attended. The display toys intrigued Charlie and were the type of toys she generally enjoys. At home, I looked at the website for possible birthday gifts. During my search, I found out the company has a special needs guide which I found helpful.

3)Go Baby Go! : Today, I discovered Go Baby Go! It is a project at the University of Delaware that adapts motorized toys for kids with special needs.

10269627_10101667305173939_1033447709722351696_nI took Charlie to the USA Science and Engineering Festival. I knew, going in, that it was going to be extremely crowded and Charlie was too small for most of the interactive exhibits. My main goal was to collect science themed coloring books, story books, and activities (like paper airplane kits) that we could do together at home.

After walking through row after row of exhibits (and having to explain that Charlie was older than she looks as I collected coloring books and paper airplanes for what people thought was a baby), Charlie let out a squeal. We had come across an exhibit with a ride on toy.

The lady working behind the exhibit table asked Charlie if she liked it. Charlie smiled and clapped as I explained (for what felt like the millionth time) she was older than she looked. The lady responded by asking Charlie if she’d like to ride on the toys. To Charlie’s delight, the lady helped her ride both of the toys in the exhibit. I found out about the project and their amazing work afterwards.

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Programs, Waivers, And Forms… Oh My!

Any parent of a special needs child knows that expenses add up quickly. In addition to the usual child rearing expenses, we encounter expenses from PT, OT, speech therapy, doctor appointment co pays, dieticians, special formula, orthotics, home health nursing, and therapeutic equipment. Over the past few months, I sought information on programs for which we may qualify. Today, everything was in place to apply.

If you live in Virginia, I recommend Moms In Motion  for help with the Medicaid Waiver process. The organization does a great job providing explanations of the different types of Medicaid Waivers, who qualifies, and how to apply. In addition, they offer assistance with applying for two other programs that may be helpful for children with special needs.

For those who do not live in Virginia, ask your Early Intervention services coordinator for suggestions of where to start. Charlie’s services coordinator was extremely helpful with sending us literature and directed us to Moms in Motion. Another useful place to begin is the local department of social services.

Filling out the forms was time consuming and a little confusing. Honestly, some of the questions sounded like riddles. That is why it is helpful to have an agency like Moms in Motion available to answer questions. By the end of the process, I was more than a little frustrated and could only hope that I answered everything correctly. However, it was doable.

Thankfully, the forms are finally complete and ready to be submitted. My fingers are crossed that Charlie qualifies for one or more of the programs.

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Developmental Delays And The Playground

For me, the playground was an intimidating frontier. Charlie had significant developmental delays. I had no idea how to play with her at a park and it hurt to see her peers run circles around her. In this post, I share a few ideas that worked for us.

Park BlanketCharlie’s motor skills were very limited for quite a while. Her hands were fisted longer than they should have been, she couldn’t roll over, and she wasn’t strong enough to hold a toy. During this time, I laid Charlie and her stuffed animal toy on a blanket near the playground. She liked to hear the sounds of other kids and look around. It encouraged her to turn her head which helped with her toriticolis.

As her therapy progressed, she improved and gained head control. Yet, she was unable to sit. Charlie’s dad and I took turns playing on the playground equipment with Charlie on our laps. We took it slow and supported her where she needed it.

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loneswing1When Charlie was able to sit supported, she took on the swings. She liked to lean up against the front of the swing and stabilize herself with her arms. I gently pushed the swing so that it barely moved.

arb1After Charlie’s first birthday, she started to sit independently and was interested in other kids. That stage posed different challenges. Charlie wanted to play with her peers but her physical delays limited her interactions. During this phase, I took a king sized flat sheet to the park along with several toys. Charlie played on the sheet near the playground and other kids often joined her.

Charlie’s skill set continued to improve. Before she could walk and stand, I looked at playground apparatuses and brainstormed ways for her to use it. As she crawled, she bounced over bridges and used the jungle gym to practice standing.  I encouraged her to touch and explore the mulch, grass, dirt, and other textures.

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swings2Now, Charlie is almost two. She is starting to walk and is beginning to climb. In response, I have adapted our play again. The stairs at the playground are perfect for her to practice on. Due to the open design, I am able to assist her with the motions and can catch her as needed. She also enjoys climbing (with my assistance) up the jungle gym. I let her do the work she is able to do. When she is feeling brave, she will try a solo ride down the small slide. Of course, she is still a fan of the swings.

Honestly, the playground was a tough venue for me. A few times I went home fighting back tears of frustration or hurt. To come up with play ideas, I focused on what Charlie could do and thought of ways to utilize or incorporate the skill. There was a lot of trial and error involved. But, it has been worth it. The playground is one more place to encourage skill development and Charlie loves to play outside.


5 Activities For Parents On A Snowbound Day (Or Any Day)

According to local news, we had about twenty inches of snow dumped on us. We are stuck at home for a day or two. Last time we were forced indoors, I suggested activities for the kids. Today, I have ideas for adults.

1) Make a weighted blanket. Charlie’s OT had suggested that we try a weighted blanket with Charlie. I attempted to make one because they can be rather costly. I’m not very crafty. When I finished, there were beads everywhere and I cursed the suggestion. I wish I had found this Sewing Tutorial from Mama Smiles prior to my attempt.

2) Start a parent group. While the post is specifically titled How To Start A Preemie Support Group by the amazing Urban Flowerpot, the steps can be adjusted to create any sort of parent group. I love my moms groups.

Charlie's NICU Shadow Box

Charlie’s NICU Shadow Box

3) Make a NICU (or newborn) shadow box, scrapbook, or baby book. Assemble all the odds and ends saved from your child’s start in life. Then, organize the pictures, piece together a display, or fill out a baby book. A permanent keepsake can be made out of the memorable clutter.

For the strictly digital parent, Mashable provides a nice list of online scrapbooking resources. Kidmondo offers an online baby book.

4) Read. I enjoy Bloglovin and Scribd. Bloglovin allows you to find and add blogs to a feed. Scribd is like the Netflix for e-books.

5) Visit Share Your Story. Share Your Story is a great website resource provided by March of Dimes. Parents can post on forums that address infant loss, pregnancy loss, NICU stays, life after the NICU, infertility issues, pregnancy, and just about everything else.

In addition, parents can start their own blog on the site. I cross post this blog on the site (SEO suicide, I’m aware). The site is a great way to connect with other parents on similar journeys. There is even an annual gathering of the sites regular users.

Personally, I would like to spend more time on ideas such as these. However, I am preoccupied by having to remind Charlie, “Don’t climb on that!” or “Get that out of your mouth!” I’m thankful for the long nap Charlie takes daily.

Charlie was not a fan of playing in the snow today.

Charlie was not a fan of playing in the snow today.


Today’s Small Victory: Obtaining Speech Therapy

I couldn’t sleep last night so I sought speech therapy options via the internet. When I woke up this morning, I decided today was the day I was going to find the recommended speech therapy for Charlie. The task ended up being easier than I anticipated.

To begin, I called Charlie’s insurance provider. I wanted to understand what speech therapy services are covered, how many sessions are covered, what is the co pay, who are the in network providers, and what language the prescription needed to have to ensure coverage.

Once supplied with the information, I started to problem solve:

  • Early Intervention (in our state) will only provide speech therapy once a week at the most. It is an option, just not an ideal option.
  • The local pediatric therapy providers were in network but the insurance co pay was high and only once a week services were covered. Another option, but not a very good option.
  • There was the possibility that both of the prior options could work complementary with each other. That idea is a better alternative.
  • During last night’s internet search, I discovered a nearby university with a speech pathology program offered speech therapy. This seemed to be the most promising of all but needed to be investigated further.

I called the university to inquire about the program. Jackpot! They offer speech therapy and it was at a reasonable cost with a possible fee reduction option. Additionally, forms are provided for possible insurance reimbursement.

The university program looks like our best option. I will learn more as we move further along the intake process.

So far, I have received the necessary intake forms for the program via email and the developmental pediatrician is faxing the needed prescription. Our next step is to return the forms and schedule an appointment. The first appointment will assess Charlie’s speech, language, and hearing.

The process didn’t involve the predicted fight that I was prepared for. Nevertheless, I felt pretty victorious afterwards.  My hope is that this post will help other parents generate ideas for securing services for their child.

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10 Activities I Use To Occupy My Preemie Toddler When The Weather Is Lousy

Today was one of those days. The weather was of the worst kind. The roads were icy enough to prevent us from going anywhere and there wasn’t enough snow to play in. What is a parent to do with an active toddler on days such as today? Unfortunately, this isn’t the first time it has happened. This time, I was ready. Here are a few of the activities I was armed with:

1) Kid’s meal toy bin: Charlie has yet to realize that most kids meal come with a cheap toy. Instead of giving it to her immediately, I keep the toys in a bin in the closet. On days like today, Charlie loves to dig through the bin and explore the “new” toys.

2) Finger painting with food: This is a sensory play idea from her therapist. While seated in her high chair (to contain the mess as much as possible), Charlie is presented with yogurt, ketchup, apple sauce, and whatever food “paint” that is handy. She enjoys spreading the condiments around the tray and will sometimes taste them.

3) Playing with dough: These  recipes are kid safe and simple to make. I usually have the items around to make one of the three recipes.

4) Play with boxes and packaging: We use online ordering often enough that we usually have a box or two waiting to be recycled. If the box is big enough, I show Charlie that she can climb in and out of it or make a tunnel to crawl through. For the smaller boxes, Charlie likes to put small toys in and take them out. The bubble wrap and other packaging that is frequently included with the boxes are added fun accessories.

5) Musical Accompaniment: Charlie has a toddler musical instrument set. But, her favorite is the simplest and cheapest to make. When beans, rice, cereal, or whatever is on hand is added to a closed container it makes a drum and a shaker. I construct a play list of different types of music. Charlie likes to shake the instrument, sing, or dance to the different kinds of music. 

6) Explore Different Textures: I fill a clothes basket with different textured fabrics and items. At first, I let Charlie explore it on her own. Later, I sort through it with her. We discover different textures as I ask, “How does it feel? Is it rough? Is it soft? Is it scratchy?” Often, we end up playing peek a boo with the different fabrics.

7) The Straw Game: This is another idea that came from Charlie’s therapist. In order to work on Charlie’s oral motor skills, I present thicker substances to her with a straw. She likes to suck up apple sauce, jello, yogurt, pudding, and other thicker liquids.

8) New Story: I find a book that Charlie hasn’t read yet or hasn’t read in a while (library books are great for this). I present it to Charlie and let her look through it first (if she is interested). Afterwards, we read it together.

9) Bowling: I use plastic soda bottles out of the recycling bin and put a little rice or beans in the bottom. Charlie likes to knock them over. However, I’m trying to teach her to use a ball to do so.

10) Indoor Bubbles: Depending on the indoor interior, this may or may not be a good idea. I blow bubbles with Charlie. She works on blowing (I still blow the majority of the bubbles), she pops the bubbles in the air, or steps on them if they reach the floor.

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Charlie finger painted today with hummus, yogurt, and strawberry apple sauce.


How to Help Family or Friends In A Crisis

Charlie’s birth was a very lonely time for me. We did not get the normal flood of visitors, gifts, and congratulations that comes with having a newborn. Instead, the silence was deafening and the loneliness was unbearable. The thing is, very few people knew what to do for us or how to respond. Today being what it is, I have decided to write about the helpful (and not so helpful) things people did for us when Charlie was born. The information is a list of ideas that can be adapted to help others in times of crisis.

What Was Helpful:

  • My husband’s company shipped a few days worth of meals to us or people made us food. I loved this. Last year combined, we spent 120 days in the hospital. I’ve discovered there is only so much hospital food one can eat. Once I returned home after a long day at the hospital, cooking was one of the last things I wanted to do.
  • Several people sent gifts and baby items (many in preemie sizes). It was a nice way of saying, “We are thinking of you and we hope for the best.” and not actually have to say it.
  • One out of town friend said to me, “I want to help but I don’t know what to do or say.” It was a great thing to say because it was honest and let me know that we were in her thoughts.
  • Other friends helped with our animals (letting our dog out while we were at the hospital) and with the household chores. Here are some suggestions: mow the yard, shovel the drive way, drop and pick up a load of laundry at the cleaners, or give a gift certificate to a maid service.
  • I had one friend that would listen. That friend was amazing at it.
  • Other friends went out of their way to face the awkwardness of not knowing what to say or do and visited us and Charlie.

What Was Not Helpful:

  • For whatever reason, almost everyone we ran into said, “If you ever need anything…”. Instead of the sentiment that was intended, we started to hear, “Sucks to be you” every time it was uttered. I, now, loathe this phrase. Alternately, offer to do something specific.
  • It added to the stress and chaos whenever someone would volunteer to do something and cancel at the last minute. We were counting on those things getting done.
  • I had someone ask me what I needed. When I told them, they ignored it and proceeded to tell me what I needed. Not only was it not helpful, it was frustrating and dismissive.
  • Silence. Not saying anything can be much more painful than saying the wrong thing.

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.


The Voice of Reason: How To Find The Right Pediatrician For You

Finding a good doctor is important for anyone. It is imperative  when one has a special needs baby. Before Charlie was born, I was only concerned with selecting a well educated, highly trained, and vastly experienced doctor (that takes my insurance). However, I have discovered there is more to consider when choosing a doctor. Fortunately, things fell into place when we found Charlie’s pediatrician. For all the NICU parents getting ready to bring your babies home, this post is for you. These are several factors I’ve found (sometimes the hard way) to be important when choosing a doctor.

First, excellent communication is crucial. In the past, Charlie had a few doctors with whom I communicated poorly. One spoke to me like I was an idiot and another was out right frightening with a harsh bed side manner. I adore Charlie’s pediatrician because she is able to translate medical jargon and will speak to me on my level. I feel that she is very receptive to my concerns and listens well. I feel comfortable asking questions or for a further explanation. Likewise, it is important the doctor communicates well with other specialists, therapists, or nurses as needed.

Additionally, you may want to select a doctor that practices at your hospital of choice. If your baby had to be readmitted, which hospital would you prefer? Is the doctor familiar with community resources? Does your doctor have realistic knowledge of the surrounding health care community? When Charlie had severe GI issues, she needed an immediate scan and to be seen quickly by a gastroenterologist. We lived in a densely populated area where it would have been weeks if the doctor had simply written the order for a scan and given the referral. However, Charlie’s doctor was savvy enough to help us circumvent the obstacles in order to get her cared for immediately.

Third, the doctor’s availability should be assessed. Are the office hours convenient? If you want to speak on the phone with the doctor, will they do that? What is the plan if something should happen after hours? Is it hard to get an appointment? Is the doctor always booked up? Is the location convenient? Charlie had a huge number of appointments her first year. They were exhausting and stressful enough without the added worry of challenging logistics.

Fourth, how well does (or will) your doctor know your baby? Charlie sees the same pediatrician each time. She recognizes Charlie on sight. With out checking the chart, the doctor is familiar with her issues and can spot her progress. This attribute is priceless in Charlie’s medical care. Minor changes (many of which are uncharted) can be the first sign of a big problem. The better a doctor knows your baby the quicker irregularities can be spotted.

Plus, it is helpful to have a doctor that shares your expectations as to what is appropriate for your baby. Charlie is developmentally delayed. It was a waste of time for us to see the doctor that gave her exercises that exceeded her skill level. However, I do not want a doctor that will give up on her either.  Is your doctor on target with your baby’s abilities? Are the goals and course of treatments reasonable in your opinion? Not too easy or too hard?

Finally, do you trust the doctor? Are options explained when decisions need to be made? Do you feel comfortable discussing ideas, needs, questions, or concerns?

This list is not all inclusive. These are a few things I’ve managed to figure out with experience. I am grateful for Charlie’s pediatrician. Through out the chaos of Charlie’s first year, she has been the voice of reason that has kept Charlie healthy and encouraged her to thrive.  She has set the bar pretty high for other doctors to follow.

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Learning To Advocate

I very clearly remember meeting the NICU social worker.  It was a week after Charlie’s birth. She was explaining NICU life, support systems, available resources, etc. Fortunately, she handed a stack of papers to me with the information in written form. My mind wandered as I thought about my baby, wondered how we ended up there, and worried about my lack of milk. Despite the mental fog, I do remember hearing her say, “You need to advocate for your baby.”

That statement perplexed me. What did she mean by advocate? They are the professionals. Won’t they always do what is best for my baby? I am at their mercy. I barely know a thing about medicine and even less about babies. I felt powerless. For what am I supposed to advocate? It did not really make sense at the time. However, I remembered her making that remark.

During Charlie’s first two months in the NICU, she was at a very large hospital with a giant open NICU. There was not much reason I felt the need to advocate. It seemed like a waiting game. Everything changed when it was time for her transfer.

Once she was well enough, we were planning on having Charlie transfered to a smaller hospital with private NICU rooms. I felt like I was losing my mind being constantly on display in the big NICU. I did not mind the nurses. The other babies’ visitors were the people I had an issue with.

I was crushed each time I would hear, “I did not know babies that were that small could live!” as people walked by Charlie’s isolette. People who could not resist the urge to peek over the screen on the few occasions I was able to kangaroo with Charlie were annoying. It angered me when people in the NICU waiting room would let their children run wild while other families were receiving devastating news in the same space. Worst of all, were the people whom insisted they weren’t sick when a nurse asked them about a cough or sniffle. Inevitably, the whole NICU room (it happened three times during Charlie’s two months) would be “in isolation” the next week due to outbreak of illness.

The staff and nurses were great. I grew weary of the other people. The lack of privacy was starting to affect my baby’s care. Kangaroo care was not allowed during isolation and I did not want her to have an illness brought in to her.

Finally, the day came that Charlie was declared a “feeder grower”. It meant she was well enough for transfer. My husband and I were ecstatic. Our drive to the hospital would be much shorter and we could have our privacy! It would be one step closer to home.

We anxiously waited days for the transfer to happen. Each day, we were told that it was time. However, “It will probably happen tomorrow” was all that we were told.

After a week, I had enough. I told my husband, “I’m not leaving the hospital today until I get Charlie out.” I sent emails and had a face to face meeting. Charlie was scheduled to transfer in less than twenty four hours. In short, the problem was that she was lost in the system. I don’t know how long we would have waited had I not decided to speak up.

That was my first experience of advocating in Charlie’s care. At the time, I felt guilty for raising a fuss. I was concerned that I was creating problems. In hind sight, I do not regret it and see that it was necessary.

Later, there were smaller issues in which I needed to speak up. For example, there was a visit with a particular specialist. She asked, “Why is Charlie wearing pink?” as she entered the exam room. I was not offended. Things like that happen with a name like Charlie. When I explained Charlie was a girl, the doctor told me that if I wanted to call my baby Charlie then I should have named her Charlotte. After she inquired why Charlie was so small, I requested Charlie be examined by another doctor.

The biggest and most recent example of advocacy occurred when Charlie could not move. I was told by numerous health professionals to “wait and see”. However, I knew that something was “not right”.

She missed all of her milestones at three months (adjusted). At six months, we were still waiting. I saw the look on the faces of medical personnel as they examined her. It was the look of quiet concern. I saw that look plenty of times during the three and a half months she and I were hospitalized. I wanted someone to come up with a plan rather than “wait and see”. I made sure that Charlie’s case was not handed off or left needlessly waiting. I asked questions and prodded for action. Mostly, I made sure that Charlie got the care she needed.

In the end, it does not matter to me if I come of as neurotic, pushy, obnoxious, or difficult. It is about Charlie, not me. What matters is that Charlie receive every opportunity to have a healthy and well adjusted life.

To me, being an advocate does not mean making sure that things are always fair. That would be an endless and impossible task because life is not fair. Instead, being an advocate means speaking up so Charlie gets what she needs.

I consider it fortuitous that out of everything that social worker said, I heard her instructions to advocate.

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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.


Rocking It or How We Survived Lockdown

There are so many losses that occur when one has a preemie. I became aware of my first loss when I had to leave the hospital without my baby. The toll kept mounting from there.

I did not get to wear any of my maternity clothes. Nor, did I get to take pregnancy pictures. I missed out on bonding time with my baby in the womb and as a newborn. There are countless things that preemie moms are robbed of. Some of my losses sadden me to this day.

To think, I was one of the lucky ones… my baby came home.

After I stumbled my way through the shock and grief of my baby’s early delivery, I tumbled head first into mourning. It was difficult for me to get up from the blow.

My sadness became such an issue that: I found a way to bypass all those moms taking their new babies home by taking the long route up to the NICU each morning. I changed grocery stores and hid from my neighbors in order to avoid the explanation of why I was no longer pregnant or relay (and relive) the day’s events in the NICU for each individual.

I secretly hated and was envious of all the complaints posted about newborn parenting life that popped up on my Facebook news feed. It took most of my baby’s NICU stay (88 days) to work through much of the mourning.

After two months, my baby was transferred to a closer hospital. There, the NICU had private rooms and it helped immensely. I got back some of the things such as my privacy, my dignity, and special moments with my baby. By the end of her stay, I had almost come to terms with what I had lost. I was not ready to give up anything else.

But, I had heard stories from preemie veterans. I had heard how the isolation and infection control measures of the first year home can be just as demoralizing or even worse than the NICU experience. The time of quarantine like measures is often referred to as “lock down”. I refused to surrender my first year with Charlie to it.

At one of my baby’s first appointments with her pediatrician, I asked her about the rules for home life (my baby came home at the start of RSV season in September). After the NICU, I was accustomed to the excessive hand washing and the sanitizer. We had to limit our contact with people and public places. I inquired about going outside and was told it was fine. Armed with this information, I was able to come up with a plan.

Our state has thirty six state parks. Each one is beautiful, unique, and basically vacant on week days in the off season. In between appointments, we decided to visit each one.

With a newly acquired jogging stroller and a one year pass, we set off.

We have visited eleven so far (most parks more than a few times). We have hiked over three hundred miles, had many adventures, and saw some amazing sights. It started out as a whim and a way to pass RSV season while avoiding “lock down”.

However, now it is important to me that we finish and visit all thirty six parks. By doing this, I am giving the finger to the whole preemie experience… Prematurity can take away the infant experience as I planned it. Nevertheless, we are rocking it out and having a great time.

sky meadows

Before we got the jogging stroller, here is where it began Sky Meadows State Park.

Mason Neck

Mason Neck State Park

We had reached 100 miles at Shenandoah River State Park.

From our first weekend get away at Occoneechee State Park.

Kiptopeke State Park

First Landing State Park

UPDATE: As she got older, she there was so much more she could do at the parks…

sensory play

Sensory play at Shenandoah River State Park

Chippokes Plantation

Swinging at Chippokes Plantation State Park.

James River State Park

Practicing standing (for the first time) in the stump garden at James River State Park.

As of 10/10/13, we have visited 17 of the 36 state parks. See also: One Third Complete


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