Tag Archives: toddler

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.

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I Confess, I Hate Feeding

I have to say it. I hate feeding. Or rather, I hate feeding disorders. For two and a half years, we’ve been desperate to avoid the g-tube and have managed to do so, so far.

As far as feeding goes, it is a see saw ride between hope and discouragement. I find that Charlie’s feeding disorder affects my relationship with food.

Before all this, I relished mealtime. Now, eating feels more like a mundane chore. I’m no longer excited or enticed by dishes or deserts.

I’ve lost the ability to derive pleasure from eating. It has become a routine like brushing one’s teeth…  something we do to stay healthy and alive.

I blame the change on our struggle with Charlie’s feeding disorder.

Our most recent set back happened at her last weight check. The use of erythromycin has helped significantly with Charlie’s gastroparesis (delayed gastric emptying). Charlie indicated that she was ready to attempt a slow transition to solids.

Not only did she tolerate solids (soft solids), she ate well. We continued to offer her the usual formula but we introduced more solids. At first, it was mostly for practice. But she enthusiastically gobbled the offerings and also wanted to try the food on our plates. We happily indulged her desires.

It seemed like between the formula, what she ate off our plates, and the food we offered her that she was always eating.

When it was time for her weight check, I was excited. I couldn’t wait to see how much she gained. I dared to hope that it was the beginning of the end of her feeding issues.

The nurse placed her on the scale and announced her weight. I gasped. How could she have possibly lost weight?

I tried to figure out the inconsistencies. Was it the same scale? Was it a naked weight? Was the scale zeroed properly?

I couldn’t figure out the missing weight. That day, I called the feeding clinic and let them know that there may be a problem. I wanted to be proactive before it turned into a bigger problem.

The feeding clinic’s dietitian requested that I keep a food log for Charlie. I diligently and meticulously (I have chemistry experience) documented every morsel of food that Charlie ate.

However, I discovered a problem. Charlie eats very slowly and pauses frequently because she is tired. This is why she eats all day.

The dietitian wanted me to break it up into breakfast, lunch, and dinner. But, Charlie ate continuously through out the day and there were no defined meals. I documented everything by day. The dietitian could figure out breakfast, lunch, and dinner.

The results? Charlie consumes 130% of her caloric needs. She also consumes more protein, vitamins, and nutrients than required. As of right now, we are unsure why she lost/is losing weight.

But, there are a few theories.

First, Charlie is extraordinarily active for a two year old. Maybe she is burning more calories than she is taking in.

Second, maybe there is an issue with poor digestion or malabsorption. When she was 100% formula fed, she didn’t have weight loss issues as long as she ate the amount of formula recommended. But, the formula is fully hydrolyzed (broken down) which makes it easier to digest.

It could be none of these things.

Maybe the weight loss was just a random fluctuation or there was an error during the weight check. And, her next weight check will be better.

Her next weight check is in a week. I hope it goes well. I have my fingers crossed that this is just another scare. If not, her follow up with the feeding clinic is the following week.

A sneak peek of Charlie's Halloween costume which she wore this week to Chuck E Cheese.

A sneak peek of Charlie’s Halloween costume which she wore this week to Chuck E Cheese.

 

 


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?


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.

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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.

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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.


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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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.


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.

 


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.


I Didn’t Realize It Was Miserable

Thanks to the Parker Lee Project, Charlie received her first case of her new formula yesterday. It has only been a day since Charlie started her new formula but, I’ve already noticed a huge difference. I didn’t realize how miserable feeding had been for us until today.

Charlie has been learning to eat solids for over a year with limited success. Until yesterday, her major source of nourishment was from a partially hydrolyzed whey protein infant formula.

However, this posed two problems that we (her daddy and I) were aware of. First, the formula tasted disgusting so we had to get creative about disguising the flavor. Second, there weren’t enough calories in infant formula to satiate Charlie.  The formula had to be fortified with pretty much any food that flowed through a cross cut nipple.

Honestly, we had no idea what we were doing. But, as long as she continued to grow and gain weight everyone seemed happy with the approach. We (her doctors, her daddy, and I) hoped the spit up, reflux, and vomiting was something she would outgrow.

Feeding had become a complex process of guesswork and mixing of formula with food substances that Charlie was coaxed to eat. She was good about it. Better than I would have been.

But, there was a lot of spit up and occasionally she would vomit for what seemed like no reason at all. We constantly reminded anyone who played with Charlie, “Careful, don’t make her throw up!” Her crib sheets needed to be changed, at least, every two days due to spit up stains. This was our normal.

After her evaluation at the feeding clinic, we learned that Charlie has difficulty with chewing, trouble coordinating the movement of food with swallowing, a sensitive gag reflex, slow gastric emptying, poor motility, and a casein allergy. The gastroenterologist prescribed a specialty formula (a fully hydrolyzed whey protein pediatric medical food with fiber).

There has been a noticeable difference only a day after the switch to the new (and more appropriate) formula.

While it smells gross, Charlie readily eats the new vanilla flavored formula. There is no mixing or convincing her to eat. Plus, she hasn’t spit up or vomited since the introduction of the new formula yesterday morning. Her reflux has improved significantly.

I had no idea how stressful and awful Charlie’s feeding and GI issues were until they improved. It wasn’t until I felt an overwhelming sense of relief when feeding Charlie this morning that I realized how bad things were. I feel somewhat guilty for not making the realization and insisting that the issue be addressed sooner.

As a side note, I would like to inform my readers about The Parker Lee Project. Through the amazing work of the organization, parents in need of medical supplies can apply for the supplies (if available) free of charge. I’m grateful The Parker Lee Project supplied us with thirty days of formula (almost $1000 worth) while we wait for the paperwork to be processed with insurance and the durable medical equipment provider.

Additionally, those who have extra medical supplies that a child has out grown or no longer requires can donate them to this organization. Financial contributions are also appreciated.

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Charlie golfed a little on the Fourth.

 

 


But She’s Healthy Now, Right?

Last night, I made a quick trip to the store by myself. The cashier scanned the baby oatmeal and asked, “How old is your baby?” I told her that she just turned two. The cashier said she had a two year old and there is no way her two year old would eat baby oatmeal. I explained my baby was born at twenty six weeks and it complicates things. The cashier’s immediate response was to pose the question, “But she’s healthy now, right?”

I have no idea how to answer the question. Do I be polite and give her the answer she wants to hear? Or, do I use the moment to be truthful?

I want people to know that, despite everything, things are OK, her life has quality, and we are happy. On the other hand, there are still numerous specialists, therapists, and concerns involved in our daily life. She is not what many would consider “healthy”.

I want others to know that babies like Charlie don’t go home from the NICU and become immediately healthy. It’s a long, tough road and the end isn’t in sight for us.

At the very least, I don’t want to perpetuate the myth that all preemies catch up by two.

I suppose I could have ended the conversation by saying, “Yes, she’s healthy now” and left it at that. Instead, I answered with, “She’s getting there. She needs time and therapy. But, we are well.”

How do other parents of preemies answer this question?

She was very happy to find a baby pool in the yard this morning.

She was very happy to find a baby pool in the yard this morning.


Today’s Feeding Consultation

Charlie and I made the two hour pilgrimage to the university health system that houses her specialty clinics. Today’s topic of concern was feeding. I tend to be leery of new specialists since our meeting with the physiatrist from another health system. In most cases, like today, being wary is unwarranted.

Today’s feeding consultation was with a gastroenterologist and speech therapist whose expertise is in feeding. For those who don’t know, Charlie has overcome a significant oral aversion. However, she feeds poorly and continues to be (partially hydrolyzed whey protein) formula dependent.

1517637_10101695765129959_3631522303372407994_n_editedAt the beginning of the appointment, we discussed Charlie’s feeding history and GI issues. Charlie was physically examined and her previous test results (swallow study and other imaging) discussed. Later, they watched Charlie eat (as much as she would) foods of different textures and consistencies.  At the end, we discussed what may be the issues and a plan.

From the GI perspective, Charlie has slow motility due to her CP. Her stomach empties slowly and things continue to move slower than usual through her intestines.  She also has a milk protein allergy which is common among preemies.

From the speech/feeding perspective, Charlie does a poor job of chewing. Despite the appearance of a chewing motion, she mostly uses her tongue and sucks food to mush rather than chew it. In addition, she has sensory related issues such as stuffing, a preference for strong flavors, and a gag reflex that is more sensitive than average.

All of these things, hamper her feeding progress.

The gastroenterologist has suggested Charlie stop using infant formula. It is no longer appropriate. Instead, she will start a “big kid” partially hydrolyzed whey protein formula with fiber.  It is 30 cal/oz as opposed to the infant 20 cal/oz. The fiber will help with her motility issue. Possibly, the lower fluid intake will make her feel less full and stimulate appetite.

The speech/feeding suggestion is to go back to using soft foods, easily chewed foods, or finely cut up foods (almost pureed). The hope is she will not have to work as hard at chewing and will ingest more than just a couple of bites. Over time, with work and practice, her jaw muscle strength and coordination will improve. The feeding specialist will send some suggested foods and exercises.

Overall, I was very pleased with how today’s consultation went. I felt like the professionals understood where we were with Charlie’s feeding and are supportive. I didn’t feel pressured to try things (like stopping the use of formula) that Charlie isn’t ready for. Plus, I feel like the treatment plan is realistic and doable. The frustration I’ve felt most recently over feeding has been abated.

Today’s appointment was a step forward after being stuck for some time now. I feel optimistic that Charlie will be a good eater sooner rather than later.

 


Feeding Clinic Ahead

After music therapy, Charlie and I went strawberry picking.

After music therapy, Charlie and I went strawberry picking.

During Charlie’s music therapy appointment today, I received the call. The voice on the other end inquired if it would be possible to bring Charlie to the feeding clinic tomorrow. It was short notice but I didn’t turn down the opportunity.

Tomorrow, Charlie will be seen by a gastroenterologist and a feeding expert. Hopefully, we can get some answers or ideas.

Charlie’s feeding progress is stuck on a plateau. With therapy, her oral aversion and speech sounds have improved significantly. However, her intake of solids is rather lacking. At the age of two, she continues to be (hydrolyzed protein) formula dependent.

I can’t figure it out. Her regular health professionals are out of ideas. Her developmental pediatrician provided the referral for the consultation with the gastroenterologist and feeding expert.

Is her poor feeds due to the silent gag that showed up on her swallow study back in September? Is her stomach bothering her? Why does she not tolerate milk? Is it an allergy? Why does she continue to spit up at the age of two? Is her poor solid feeds CP related? Why is her motility very slow?

I don’t expect all of these questions to be answered tomorrow. I will be lucky if even one of them is answered. What I hope is that ideas are offered, suggestions are made, or a plan is devised. I hate this feeling of being stuck and not knowing what to do next.

Her speech is slowly coming along. Now, it’s time for progress in feeding.


The Week of Two

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

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

Yet, last week was a very emotional week.

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

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

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Charlie and I went hiking today.

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

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

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

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


I Don’t Mind The Labels

At this point in her journey, Charlie has racked up quite a few diagnoses. They range from spastic diplegia to a feeding disorder. Her doctors do their best to deliver the news gently and with care. But, by the time they are mentioned, I am relieved.

horseI am Charlie’s mommy. I know what she can do well and what she struggles with. I’m the first one to realize when there is a concern. When Charlie receives a diagnosis, the doctors are merely naming what I have already known for some time. I also realize that a diagnosis does not define her or set limits.

Sometimes its tough but, receiving a diagnosis can be helpful. They are tools. Insurance will more readily approve services for a diagnosed condition rather than the generic term “delay”. Additionally, understanding the reason for a delay can aid in overcoming it and identifying the right therapeutic strategy.

The labels do not bother me. They are not who Charlie is or will grow to be. Only she knows how far she can go. I have no plans of letting a label stop her. My job as her mommy is helping her reach her potential and find her place in the world.

 


Full Steam Ahead

This morning’s post is very brief. This week has been non stop with Charlie’s regular therapy compounded by appointments and activities.

For example, today, we are headed to music therapy topped off by a near sprint to an appointment with the ophthalmologist. I’m dreading the ophthalmologist appointment.

Charlie’s right eye has been pulling more to the center when she attempts to focus on things. I suspect I’m in for a lecture on the importance of making her wear her glasses. I know it’s important and I could do a better job ensuring she wears them. However, these lectures leave me discouraged with the realization of how tired I truly am.

Now, I have to suck it up and face the music. I have my fingers crossed that today does not hold any surprises.

bowlingforbabies

Charlie helps select a ball at last night’s Bowling For Babies event.


Weekend At Morgan’s

Charlie played the drums while boosted on my knee.

Charlie played the drums while boosted on my knee.

My college friend, Morgan, recently moved to Delaware. Since her relocation, I had promised to bring Charlie to visit her. With the way our schedules worked out, this weekend was the chosen weekend. The journey forced me to confront some complex emotions because Morgan is twenty five weeks pregnant.

Prior to the trip, I had expected it to be hard. The twenty fifth week was the last full week that I carried Charlie (she was delivered the morning she reached twenty six weeks). I expected to feel envy, jealousy, and a little sadness. But, being with and supporting my friend was more important than any little uncomfortable twinge of emotion. I swallowed back my reservations and braced myself for what may come.

I like the expression on her face in the reflection on the glass.

I like the expression on her face in the reflection on the glass.

Surprisingly, I didn’t need to worry. All I felt was excitement and joy for her. It was precisely the way I felt towards pregnant friends prior to Charlie’s birth. Another sign I’m moving on in life.

The visit was a lot of fun as they usually are with Morgan. She accompanied Charlie and I to the Please Touch Museum in Philadelphia. The museum was an amazing place for Charlie to explore and play. I think her favorite part was the hundreds of rubber ducks on display in a long case.

Additionally, there were several play areas exclusively for children under three. Because of Charlie’s small size and physical delays, designated toddler areas are the very few places in the world where she can explore and play independently. It was wonderful queen_editedsome of the toddler play areas had staff to ensure only those aged three and under utilized the space. Some of the other designated toddler areas did not.

The difference was obvious.

It is frustrating when older (far exceeding the age limit) and much bigger kids enter areas designed for little kids. This defeats the purpose of a toddler play area. Because the older kids are bigger and play rougher, they endanger the little kids by knocking them over, jumping on them, or stepping on them. However, this problem isn’t limited to the museum. Sadly, it occurs in just about every unsupervised toddler spot.

But, I digress.

After we explored the museum, we returned to Morgan’s house in Delaware for the evening. Charlie showed off her farm animal noises before heading to bed. Seeing a friend is always good but, I can’t wait to meet Morgan’s little one.

duck


The “B” Word

Charlie has finished her second week of the new speech therapy program today. The program is a good fit for us. I love it.

The commute to each session is a little under an hour. It sounds terrible but it isn’t. To make best use of the time and gas, I plan an activity that is on the way. So far, Charlie has been to the zoo, a book fair, the children’s museum, and the park before speech therapy. Sometimes, we stop for lunch or run errands. After each session, she naps on the way home.

Instead of feeling bad for me, the person I feel sorry for is the student therapist. Charlie is full of energy and curiosity. That is a nice way of saying she gets into everything without a moment’s rest. In addition, the student therapist is being observed and critiqued by her instructor via a video camera link up. The situation seems like it would be a lot of pressure.

Nevertheless, the student rises to the challenge and does a great job with Charlie (and me). I don’t feel obligated to participate in the sessions (although, I do stay in the room for Charlie’s comfort). Yet, I’m not discouraged from providing input, asking questions, or helping. The student does an excellent job coaxing those elusive consonant sounds out of Charlie’s mouth and teaching her how to use PECS.

Lately, at home, I have noticed a difference in Charlie’s speech. She slows down and tries to say words instead of the usual limited babble or closed mouth sounds.

Tonight, at dinner, Charlie said, “Ball” (prior to this she used ba ba for anything beginning with ba). Yes, it was more gluttural than it should have been and it was obvious that it required great effort. But, she did it on her own volition. And to us, it was huge!

Charlie plays with Kaia in the backyard.

Charlie plays with Kaia in the backyard.

 


The Myth Of The Common Parenting Experience

After a brief recuperation period from my gall bladder surgery, it is back to business as usual. Charlie and I have resumed our regular activity and appointment schedule. However, something is different despite the familiar routine. Lately, I’ve been having the reoccurring thought:

There is no such thing as a common experience.

One of the things that I felt I lost when I became a micro preemie mom is the common parenting experience. Because of this, I struggle with envy and jealousy from time to time. It does not take long for a random parenting article such as “How Your Child Can Become Fluent In A Second Language” to pop up in my news feed and that pang of envy follows. Second language? We are desperate for a few words of a first.

I frequently battled the anger, frustration, and hurt that surfaced whenever I heard someone complain about a parenting problem I wish I had. Worried about having to pay future college costs? I’m busy scrambling to cover my child’s astronomical medical bills now.

Even though I’m surrounded by amazing people, I felt lonely and isolated. I secretly desired to rejoin the “regular” parenting experience. But then, something happened.

One night while seeking new blogs to follow, I surfed through countless sites. As I read through blog posts, I noticed that there were single parents, loss parents, gay parents, special needs parents, working parents, religious parents, holistic parents, adoptive parents, hospice parents, and a multitude of other parenting identities.

It clicked. The common parenting experience that I longed to be a part of doesn’t really exist. My observations over the next few days further supported the realization. I saw other types of parents at the store and at the playground. Not one of them was the same as the last.

I suppose the “common experience” is that everyone has their own unique experience and challenges. The grass only seems greener on the other side. Knowing this takes away from the bitterness brought on by envy and jealousy. I am starting to see beyond my own hurt. If anything, I feel less alone.

Charlie examines the slide before going down it.

Charlie examines the slide before going down it.


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