Tag Archives: speech therapy

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.

 

 

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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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When Words Fail Her

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

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

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

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

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

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

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

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

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

I guess maybe she does communicate in her own way.

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


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.


A Proud Mommy Moment

march1Today, Charlie and I attended the first of three walks we will be helping with in our area. Our official walk with our team is on May 31st. (It is not too late to support our team!)

Prior to the walk, I prepped Charlie’s stroller for the six mile course I planned on walking. It will be a little bit before the adaptive stroller insert arrives in the mail. In the meantime, I cut up a pool noodle and created a booster seat with body support. It is somewhat of a hassle but will work until the insert arrives.

The early morning weather before the walk was chilly. Because of this, I left Charlie bundled up in her stroller and pushed her around.

After the walk started, I put Charlie’s blanket and coat in the stroller basket. Charlie “talked” to me the entire way. It turned out to be a lovely sunny morning.

I am proud to say we completed the walk in a respectable amount of time. Although, my body could tell that I was no longer pushing a little six pound baby up those hills.

march for babiesFollowing the walk, I helped Charlie out of her stroller. She wandered aimlessly and tumbled through the grounds as she munched on pizza. I trailed behind her while she said hi and flirted with the people she encountered.

We passed one lady who said to me, “That is not the one pound baby is it?” I replied with a smile, “This is Charlie.” She explained that she thought one pound babies wouldn’t ever be able to walk.

That was my proud mommy moment. Charlie proved her wrong. I beamed.

It hasn’t been an easy road for us. Sometimes, I wonder why it hasn’t been as easy as it was predicted to be when she left the NICU. Why didn’t she fulfill the super preemie prophecy?

Today, instead of having to explain why Charlie can’t do some things yet, Charlie showed someone what she can do. And that moment, made every bit of the struggle and all the work worthwhile.

 


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.

 


First Week of Speech Therapy

Charlie had her first speech therapy sessions with her new program yesterday and today. I am hopeful she will benefit and make progress.

Charlie’s new speech therapy program is located in a local university. The therapist is a graduate student who works under close observation (watched on camera) by a speech professional (her instructor). At the end of the session, the student and professional discuss their insights and therapy plans with me.

During the past two days, the therapist got to know Charlie and observed her speech through play. The real work starts next week. I am interested to see how it goes.

During next week’s sessions, Charlie will have to ask for what she wants using PECS. Also, she will begin working on speech sounds. I hope that it doesn’t take long for Charlie to catch on. But, I’m also prepared for it to be a lengthy process.

Charlie’s speech and feeding have been the most frustrating of her delays. Mainly, because I have no idea how to help her. With her fine and gross motor skills, I could use hand over hand to guide her through movements until she was able to perform them on her own. I don’t know how to do something similar when speech and feeding is involved. It is a discouraging and helpless feeling.

I really hope this program works. I am out of ideas of what else to do.

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Charlie’s last OT session was at a park.

 

 

 


Last Week’s Speech Assessment

Last week, Charlie had her speech and language assessment at the university (my alma mater) where she will receive her speech therapy. Other than it feeling incredibly strange to wheel a baby through the same building where I attended classes, the day went really well.

The first part of the evaluation addressed her hearing. Charlie was not exactly cooperative for this portion. She fussed and pulled the instrumentation out of her ears. However, the audiologists concluded that Charlie’s hearing is about average.

Next, her speech and language was evaluated. This part required Charlie to play with the examiner. She laughed and excitedly clapped as she played with the doting students who examined her.

Finally, the speech pathologist discussed the results of the exam with me. She thought Charlie may have dysarthria instead of apraxia. Dysarthria, she explained, is sometimes seen in kids like Charlie that have cerebral palsy and/or PVL.

Ultimately, the speech pathologist agreed with the developmental pediatrician’s recommendations of speech therapy twice a week. Additionally, she discussed the option of teaching Charlie to use PECS.

When the use of PECS was mentioned, I realized this was a long term issue that would not clear up with a few months of intensive speech therapy. My heart sank a little and I sighed out a bit of the hope I had been holding on to.

Despite that it was a long term issue, I felt the day went well. Everyone agreed that Charlie’s expressive speech was significantly delayed and there was a consensus on treatment.

Afterwards, I took Charlie to the children’s museum to burn off her last bit of energy.

There were some noisy kids at the children's museum that Charlie did not approve of.

There were some noisy kids at the children’s museum that Charlie did not approve of.


Another Vocabulary Word: Apraxia

Charlie’s appointment with the developmental pediatrics clinic yesterday was so-so. It could have gone better. On the other hand, it could have been worse. I have been given a new word to learn and digest: Apraxia.

The day started when Charlie met with the speech pathologist for her evaluation.

The speech pathologist was thrilled with Charlie’s feeding progress. When she was evaluated last April, she would not allow a spoon to pass her lips. Yesterday, Charlie happily munched on crackers and sipped juice through a straw. I proudly rattled off the list of foods Charlie will eat. We discussed my concerns that she often chokes and does not eat enough solid food to meet her nutritional requirements.

During the second half of the evaluation, the speech pathologist assessed Charlie’s speech delay. From what I understand, Charlie should have more words and the few words she has should be clearer. However, her receptive language (her understanding) is great. The speech pathologist mentioned the word apraxia.

The occupational therapist was the next to assess Charlie. During the evaluation, she placed a peg board with pegs in front of Charlie. I had not tried anything similar with Charlie and I wasn’t sure she would be able to do it. Much to my surprise, she followed the OT’s cues and placed the pegs in their holes. I was ecstatic.

Charlie tested slightly below her adjusted age which is a huge improvement over her past OT evaluations. I am proud of Charlie’s progress. A year ago, I was elated her hands had finally opened and she was strong enough to hold a light toy. I did not dare to hope that Charlie would be where she is today. There was too much heartbreak at stake.

Next, Charlie saw the developmental pediatrician. He further discussed apraxia with me and suggested, if at all possible, Charlie receive speech therapy twice a week. He mapped out the obstacles I face such as insurance coverage and finding an appropriate therapy program to provide services.

Also, we discussed whether or not Charlie needed another set of AFOs. He didn’t think it was necessary but wanted to see what the physical therapist suggested. Charlie has hypertonia in her ankles and hypotonia in her knees and hips. We finished our meeting with a discussion about changing from Early Intervention services to private center based services.

Finally, Charlie was assessed by the physical therapist. Overall, Charlie did really well (for Charlie). The physical therapist recommended that Charlie have shoe inserts rather than AFOs.

We finished the long day by fitting Charlie with her new inserts.

Overall, I’m delighted with Charlie’s progress in the PT, OT, and feeding part of the speech evaluation. Although, I’m a little crestfallen that her speech delay is more complicated and of greater concern than I had expected.

Now, I  have the task of implementing the clinic’s recommendations while navigating the obstacles of insurance and available services. It feels a little overwhelming. However, I am chipping away at things a little bit at a time. Hopefully, things will be in place before I know it. Day by day is all I can handle right now.

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Frustration With The Unknown

Out of all the long term complications from Charlie’s premature birth, her speech delay is currently my biggest concern and the most frustrating.

Why? It’s because I don’t understand it. Every few days, Charlie will communicate with me very well for one short exchange. It goes something like this:

“Mama!”

“Yes Charlie?”

“Ba ba” while she signs that she is hungry.

“Do you want a bottle?”

“Ya!”

I am ecstatic after an exchange like this. I think, “Oh, she finally has it!” However, the excitement is short lived.

Immediately afterwards, she regresses to babbling like a six month old. She understands what is said to her. She tries to repeat words but is only successful about 10% of the time.  She utilizes the signs she knows often. It seems she is having trouble forming the words with her mouth.

Her speech was predicted to improve as her oral aversion decreased. Her oral aversion is almost non existent (Yay!) but her speech progress is stagnant.

My frustration is not so much that her progress is moving incredibly slow. I have learned to be patient. Rather, my frustration stems from my poor understanding as to what Charlie is struggling with. Her therapists aren’t exactly sure. I lack resources from which to learn about the issue. I am stuck for the moment.

Charlie has her 18 month well visit next week. I plan to discuss my concerns over Charlie’s speech.  I hope the pediatrician can help me understand.

How can I help or teach Charlie if I don’t understand what the issue is?

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This Preemie’s Struggle With Feeding

In honor of Prematurity Awareness Month, I am attempting to write a post a day. With each post, I hope to address a different aspect of our prematurity journey.

Before having a preemie, I was blissfully unaware of the world of feeding disorders (which are different from eating disorders). I did not know there were people who physically could not eat. That changed the day we attempted to start Charlie on purees.

When Charlie was about seven months old, her pediatrician suggested we start purees. Charlie’s dad and I were excited about the new milestone and spent half an hour deciding on the perfect first food experience in the grocery store. We gleefully rushed home and prepared to feed her.

I tried first and put the spoon up to Charlie’s mouth. She gagged and wretched. I was convinced I did something wrong and insisted her dad try. She gagged and spit up in response to his attempt as well. We were baffled as to what we were doing wrong.

I asked other parents about feeding. I received odd looks as they questioned, “What do you mean you can’t feed your baby?” My concerns were also dismissed as I was told, “No baby likes to eat at first.”

It seemed like online videos were everywhere of everyone I knew who had a baby feeding them their first food. The babies in the videos responded to purees nothing like Charlie. Why wouldn’t my baby eat?

A few days later, I called the pediatrician. After I explained the issue, she misunderstood my concern and gave instructions to be consistent. Despite my best efforts, it just wasn’t working.

I asked Charlie’s early intervention therapist for her thoughts concerning feeding. She gave the opinion that Charlie was not ready because she was unable to sit supported (Charlie had significant motor delays). I stopped the puree feeds and focused on other concerns at the time.

About a month later, Charlie was evaluated by her developmental pediatrician and his clinic. Along with other interventions, feeding therapy was recommended and started. The therapy involves desensitization of her mouth, strengthening the muscles in her mouth, and coordinating the movement of food in her mouth with swallowing.

The reasons for feeding disorders are as varied as the people who have them. It is suspected that Charlie has an oral aversion which may be a result from the intrusive instrumentation placed in her mouth during her NICU stay.

In the beginning, it was a challenge to get Charlie to put food, a spoon, or teething rings in her mouth without gagging. Her progress sometimes makes two steps forward and takes five steps back. There are stretches in which we are overly optimistic and become confident her feeding disorder will soon be a memory. These are followed by stretches that have us revisiting the question of whether it is time for a G (feeding) tube. Much like the rest of the preemie experience, feeding has its ups and downs.

For us, feeding has been a frustrating and worrisome see-saw endeavor. Which is why I am grateful for feeding therapy days like today. However, I have myself braced for a few steps back… just in case.

There are so many huge accomplishments in the picture. She is messy and not crying. She is feeding and smiling.

There are so many huge accomplishments in the picture. She is messy and not crying. She is feeding and smiling.

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The girl loves hummus.

All this happiness is occurring while she is wearing her new orthotics.

All this happiness is occurring while she is wearing her new orthotics.


Complimentary Therapies

I believe in medical science. My baby would not be here with out it. However, I have learned a healthy respect for complimentary therapies since I became a preemie parent. This is how we discovered the complimentary therapies that were right for Charlie. 

Infant Massage

Following Charlie’s birth, we were unable to touch her. She would desat and have apnea and/or bradycardia spells during hands on care. For several weeks in the beginning, we rarely held her due to the stress it induced. Charlie lasted seven minutes the first time I tried kangaroo care. I was incredibly frustrated and saddened. I read and was told how beneficial it was for her so I kept at it.

A couple of weeks later, Charlie lasted twenty minutes before she had to be returned to the isolette. When the nurse removed her from my chest, she let out a scream (it sounded more like a kitten’s meow) and gestured towards me. It was the encouragement I needed to continue.

After a few more attempts, Charlie started rooting. Her rooting reflex became so intense that she needed a pacifier to get settled. Eventually, her tolerance increased. By her last month, there were days that we would kangaroo as many as eight hours.

The PT/OT department from the hospital spoke to me about taking the infant massage class they offered. Before Charlie, I was skeptical of alternative therapies. The favorable kangaroo experience had opened me up to the idea of infant massage.

I took the class. Once Charlie was finally discharged, I tried incorporating infant massage. Like the kangaroo care, I started small. Eventually, Charlie started to anticipate the massage and readily offered up her leg (the starting point).

The massage therapy helped Charlie tolerate touch better, softened some of her stiffness, the colic routine aided her motility, and massage became another way to soothe her.

Music Therapy

Charlie has always been responsive to sound. The first six months that she was home from the NICU, she slept peacefully as long as jazz was playing. She had a tough time transitioning to sleep without it. The first toy she had shown interest in was a small bear with a chime.

After RSV season last year, she attended her first story time. During the heavy sensory play, musical instruments were handed out to the babies. Charlie opened up enthusiastically to the group music.

Shortly after that observation, I enrolled Charlie in music therapy. Charlie enjoys music therapy quite a bit. It may help with her sensory issues and her speech delay (Charlie loves “singing”). Certainly, it has helped with her PT and OT.

Sometimes she struggles to grasp a skill in PT or OT. But, she will pick it up quite easily in music therapy. For example, the OT tried many times to teach Charlie to bang blocks together. At music therapy, sound was incorporated to the skill and she learned it very quickly. With issues such as these, it is like seeing a light bulb go on over Charlie’s head.

While I feel Charlie benefits greatly from these complimentary therapies, they may not be right for every baby. The main consideration I have when trying something new is whether or not Charlie will enjoy the endeavor. After everything that she has been through, it is important to me that therapy is a pleasant experience for her. I also look for ideas of how to use Charlie affinities and proficiencies to work on the skills that she is struggling with.

We were very fortunate to find a couple of complementary therapies that work well for Charlie.

Charlie climbed on the drum in music therapy.

Charlie climbed on the drum in music therapy.


The Swallow Study

My regular followers know that Charlie had her swallow study on Friday. Since it was her first one, I was unsure what to expect. Surprisingly, it was relatively quick and of minimal discomfort to Charlie. For parents who may have a swallow study in their future (or for those that just want to know what a swallow study is), this is how Charlie’s swallow study (a barium swallow on video) went.

We were escorted back to pediatric radiology by a speech therapist. Charlie was understandably cranky due to the last time she had eaten was four hours ago. The speech therapist explained that I would feed Charlie different textures while an x-ray video was recorded.

I made the mistake of dressing Charlie in a top with metal snaps. It needed to be removed. While I undressed Charlie, the speech therapist mixed barium samples of various textures for Charlie to swallow.

Next, the speech therapist and I put on lead aprons.

After everything was prepared, the radiologist entered and introduced himself. Charlie was seated in a feeding seat and her bottom half was draped with lead. She protested a little.

Charlie quieted down as the study started and I fed her from a bottle. The speech therapist held a flashing toy to make sure Charlie looked in the correct direction while the radiologist concentrated on the imaging. Charlie did well with the bottle and did not seem to mind the barium mixture.

Next, Charlie drank from a sippy cup with my assistance. This proved to be tricky. Charlie chewed on the spout of the sippy cup. The therapist removed the vent and the fluid overwhelmed Charlie (dribbled out of her mouth). However, a few swallows were obtained and we proceeded with the study.

Later, Charlie ate apple sauce with barium mixed in followed by an even thicker mystery substance. The mystery substance is where Charlie started to have trouble swallowing (as expected).

The actual study took about ten to fifteen minutes. The majority of time was spent with the tasks before and after the study.

Before we left, the speech therapist discussed the results with me. Thankfully, there are no problems with the physical structure of Charlie’s throat. Nor, is she aspirating food.

Charlie’s difficulty with swallowing food is due to an overly sensitive gag reflex. It is a residual aspect of her oral aversion.

The study provided us with useful information. It is one step closer to leaving formula in the past.

preemie feeding


Yay for Dietitians

I’ve been burned before. So naturally, I’m leery the first meeting with a new health professional. In my mind, a best case scenario for our appointment with the dietitian would result in me learning a little useful information. Where as, the meeting would be a waste of time in the worst case scenario. The whole endeavor greatly exceeded my expectations. I walked away feeling more confident, better informed, and even a little enthusiastic about feeding Charlie.

At the outset, the dietitian asked what I wished to get out of the appointment. I expressed that feeding is stressful. I explained to her how I am clueless as how to adequately meet Charlie’s nutritional needs. I continued on to say that she can not eat enough solids to sustain herself but refuses formula. More importantly, I hoped for her calorie intake to become well balanced.

I expected her to not understand Charlie’s feeding issues because very few people do. Before I had Charlie, I had no idea that feeding issues existed. She understood our struggles and offered realistic suggestions. She met us at the point we were in Charlie’s feeding progress and worked within her limitations.

She discussed which foods would be beneficial for Charlie, how to prepare them, and portion size. We talked about daily servings. She answered all of my questions fully, provided many options, and suggested useful ideas. I no longer had to wonder about things such as: Is she getting enough protein? Is she eating enough? How many calories does she need daily? How much milk is too much? Should she be eating more vegetables? If so, how?

I left with handouts and notes full of the information we discussed. With my questions answered, my doubts about feeding Charlie were erased. I dare say that I was empowered. Rarely, does an appointment turn out so well.

A day has passed since meeting with the dietitian. I no longer dread feedings. Nor, am I guessing at her intake. Actually, I am beginning to enjoy feedings and I think Charlie may be starting to as well.

cocoally3

Photo credit: Monica DeMariano


Crunch Time

Charlie’s progress has plateaued once again. She is having trouble learning to walk and difficulty swallowing. Due to these new developments, our schedule is packed even more so than usual.

For about the past week, Charlie has been heavily leaning on a kid sized chair as if it is a walker. It was her own idea. I am impressed with her ingenuity. Her therapists suspect the reason she is not cruising or standing on her own is due to limitations in her ankles and feet.

To address the issue, she has an appointment with the developmental pediatrician early next month. He will decide if ankle foot orthotics (AFOs) are  appropriate. If so, she will be fitted for them while we are there. I do not know much about AFOs (I need to read more) but what I do know I learned from this blog post (thanks again, Tatum).

Whether AFOs are the answer for Charlie or not, it is time to get this baby walking. She has been telling me for a while that she is ready (and screaming in frustration when her attempts fail).

Next, as my regular followers know, feeding has been a enormous frustration for us since the NICU. Charlie has battled allergies, reflux, motility issues, an oral aversion, and now, difficulty swallowing.

Charlie’s speech therapist stated that she has a delayed swallow (I need to read more about this as well). She frequently chokes on high flow nipples and solid foods. It is strange how she pushes her chest out and appears to bear down while eating solids. She will choke, gag, and sometimes vomit while eating.

Charlie has a swallow study scheduled later this month. Hopefully, this will uncover some of the mystery behind her swallowing difficulties.

In the meantime, she has an appointment with a nutritionist next week. This appointment is to guide us in keeping Charlie’s intake well balanced. Currently, I am doing the best I can with limited knowledge and a baby that will no longer eat formula but can not eat enough solids to sustain herself. My hope is that the nutritionist will have some useful ideas.

There you have it… crunch time.

There are many appointments with doctors, therapists, nutritionists, and tests on my schedule this month. In addition, we are stocking up on sanitizers and updating our vaccinations as cold, flu, and RSV season begins.

Fingers crossed that all goes well.

cocoally4

This is another amazing picture taken by Monica DeMariano.


Progress

Charlie’s communication has improved lately. A few weeks ago, she started using “Yay!” in context. She has since built upon that initial skill. Her progress was apparent throughout today’s activities.

During music therapy, she was more vocal than usual. She played with toy animals that are used for props during Old McDonald. She picked up a cow and said, “Moo”. Later, the therapist instructed, “Go to mommy. Find mommy.” Charlie turned, crawled toward me, and climbed into my lap.

Next, we had lunch after music therapy. I tore off and handed her a manageable slice of grilled cheese. Mostly, she gnawed and kind of sucked on it. Then, she dropped it by accident. Rather than scream, she signed “More” to me. I obliged and handed her another piece.

Recently, Charlie has begun trying to repeat simple words. Some times, she does it. Other times, it’s a valiant effort. She continued to do this most of today as well. Most notably, she correctly sang “La la la la” with the characters in a video during a song.

Later in the evening, she called for her dad using “Dada” and holding out her arms. It was her second word.

Days like today are wonderful. It is exciting to be able to notice leaps of progress. Now, if only we can get her to eat (taking food up to her mouth is a huge step in the right direction).

grilled cheese


It’s Our New Thing

Today is our wedding anniversary. My husband and I have been joking with each other all day. We find it funny we are spending it exactly the same way we did last year… watching Charlie sleep, coaxing her to eat, and diligently measuring her fluid intake.

I try to keep what I write about my husband and our relationship on my blog to a minimum. There are some things I consider too private to write about. However, because it is our anniversary, I’m going to bend that rule a little. I frequently read anonymous posts on preemie sites inquiring about relationships. I’m going to address it with few vague words. These are some of the ways having a micro preemie has affected our relationship.

The first thing I noticed was that I saw my husband stronger than I had ever seen him. When I fell to pieces after Charlie’s birth, he took the reigns. He wheeled me to the NICU to meet Charlie. He bragged about her to strangers while I stood back and secretly hoped that I would not have to talk. After all that, I see him differently now. I know he has courage and strength within him that previously went unacknowledged.

Next, we had very different coping styles when Charlie was in the NICU. Despite our best efforts to be sensitive to one another, there were a lot of misunderstandings between us due to this. We had to consciously make the effort to communicate. Especially, during the times that we were short with one another.

Finally, what happened to us was traumatic. We both had different ways of surviving and bear different scars on our psyches. There are many powerful emotions and real fears involved in raising Charlie which cause irrational conflict. Sometimes, we need to take a few minutes to cool off (which is very difficult on occasion) and proceed to talk it out. Usually, once we understand the other’s position we can construct an agreeable compromise.

Marriage is not an easy endeavor for anyone. Having a micropreemie further complicates things (as any trauma does). This morning at 2 AM, my husband strayed from our discussion of Charlie’s feeding problems (we now know it is not a stomach bug) while we changed her vomit covered sheet to say “Happy anniversary”. I smiled back pleased he remembered and because non ambitious celebrations have kind of become our new thing.


The Miracle Workers

Charlie had the anticipated appointment with the developmental clinic today. She was evaluated by a PT, an OT, and a speech therapist. When the evaluations were completed, she met with a developmental pediatrician. I had mixed feelings about the appointment. I was proud of her progress yet fearful that a new problem would be discovered.

In April, Charlie ran the same assessment gauntlet. Charlie was evaluated as having (globally) the developmental skill level of a four to five month old. Her muscle tone was questionable. I left the clinic with that guarded hope that I have previously posted about.

Today, Charlie was amazing.

In her PT and OT assessments in April, she could not sit with support. I was thrilled that at point she learned to roll over. This time she was sitting, grasping, commando crawling, and trying to climb.

At her prior feeding assessment, she choked and dribbled while eating from her bottle. She sucked on the spoon while barely able to handle a few bites of stage one food. During her feeding assessment today, she ate a container of baby food. She used a hand to place and gnaw on a pretzel. While she still has difficulty with solid food, she was willing to try eating.

Most of her skill areas are starting to reach the level of her adjusted age (ten months). However, her speech and feeding are still significantly delayed. Those areas require quite a bit of further work.

At the end of the day, the professionals at the clinic joked with me that I brought back a different baby. Everyone wanted to know what therapies she was involved in and who were her therapists. They are the miracle workers. The improvement Charlie has made is quite remarkable. No one could have predicted that she would have made so much progress.

I know that I was afraid to hope that she would have an appointment like today.

sleep

Charlie fell asleep today during lunch in the clinic’s cafeteria.


Music Therapy

I’ve previously written a post about how much Charlie loves music therapy. I now have pictures to illustrate exactly what goes on during a therapy session.

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