Category Archives: Speech Therapy

Today, The Pediatrician Called

This afternoon, we had barely made it to speech therapy in time and Charlie needed her diaper changed. I was in the midst of changing Charlie’s diaper when my cell phone rang. It was Charlie’s pediatrician.

Normally, I let all calls go to voice mail when I’m busy. But, the pediatrician’s call went to voice mail yesterday. I didn’t want to waste more of her time. I answered the phone and awkwardly cradled it between my head and shoulder.

It wasn’t a surprise the pediatrician called. We usually talk after Charlie’s clinic days to discuss how the specialty appointments went. Charlie had a clinic day earlier this week.

“Charlie has been referred to the intensive feeding program” I informed her. We both knew it was only a matter of time before it happened. Charlie’s feeding progress has been a painfully slow roller coaster ride. Some days, I think she has it and am convinced feeding disorders will be a memory. On other days, she will barely consume a thing. Currently, her weight gain is less than satisfactory.

The feeding therapist that evaluated Charlie this clinic visit was the same one who evaluated her a year ago. The feeding therapist noted the progress Charlie has made. However, the therapist stated she felt bad for us because Charlie has been working on feeding for over a year and is still having trouble.  She was one of the few recommendations for the intensive feeding program Charlie received on her clinic day.

I explained my relief to the pediatrician. In February, Charlie will have been in feeding therapy for two years. I’m tired of thinking and obsessing over feeding. I’m glad someone else will take the reins.

After my disclosure, the pediatrician spoke. I could hear her flip through Charlie’s chart which more resembles a large tome. As she leafed through the chart, she marveled over how far Charlie has come.

We reminisced over our discussions when we first recognized Charlie had developmental delays and I anxiously wondered if she would walk. We laughed about the morning she found me asleep on the chair beside Charlie’s hospital bed after her readmission as an infant. We looked back at Charlie’s first full assessment by a specialist (which went terribly). Together, we learned the best places to find chewy tubes, music therapy, and AFOs.

Charlie will attend an intensive two week feeding program soon. I’m not bothered about it in the least. Quite simply, we tried our best and she needs more than we can do at home.

Today, Charlie’s pediatrician called. She reminded me that we only lost a battle. Because, my god, Charlie has won the war. She has blown us all away.

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Yesterday, Charlie met with her state representatives during our March of Dimes chapter’s Lobby Day.

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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.

 

 


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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Plastic Toys

Today was the first day of speech therapy for the fall semester. Charlie is back to her four day a week therapy schedule. Summer was nice while it lasted.

Charlie attends speech therapy twice a week at a local university. It is much more affordable than private speech and has been more effective than EI. Since it is a teaching program, SLP students conduct the therapy session under the video supervision of an instructor.

Each semester, the student assigned to Charlie changes. Charlie met her speech therapist for the fall semester today. She did well with Charlie. I think this is a promising semester.

Afterwards, I took Charlie to Chuck E Cheese’s for dinner.

I think I’ve mentioned Charlie LOVES Chuck E and all things Sesame Street. The excitement of both things brings forth those elusive words. Activities that involve Chuck E Cheese or Sesame Street are frequently on our schedule.

If it’s timed right (off times when it’s empty), it’s a therapy dream. With minimal effort on my part, she can work on: sensory (loud noise, bright lights, motion from the rides), feeding, OT (put coins in slots, push buttons, work the toddler games), PT (builds strength pulling leavers, climbing up on rides, dancing), and speech (she mastered the “eee” sound by saying “Chuck E”).

This evening, Charlie and I went about our usual routine at Chuck E Cheese’s: we chit chatted with the manager while we ordered food (yes, the employees know us by now), we worked on feeding (the video distraction makes for longer feeding attempts), we watched and talked about the video loop (Charlie: Doggy! Me: That’s right! What’s the doggy doing? Is the doggy singing? Do doggies sing?), we danced (with Chuck E and to the video loop), we played games (she likes the Feed The Pig game), and she rode rides (she loves the carousel).

At the end of it all, Charlie and I went to cash in her tickets. This part has been a challenge.

She asked for something the last two times we redeemed her tickets. However, I couldn’t understand her. It was the same sound both times but I couldn’t make out what she was saying.

Both times, she was satisfied with whatever toy she happened to receive. But, I felt bad. Charlie was trying. Despite her best efforts, she couldn’t get what she wanted because I failed to understand her.

Tonight, we stepped up to the counter and Charlie said, “Appy”. The same sound she said the past two times. I took a fresh look at the glass case as she said, “Appy” again. I glanced at the employee (the staff is amazing) with an expression that begged for help. I didn’t want to waste his time but I desperately wanted to figure out what she was trying to say.

The last time, it sounded like a question, “Appy?”

I scanned the case again and IT CLICKED!

I blurted out, “Airplane! Do you want the airplane?” Charlie said, “Yeah! Appy!”

I passed the little plastic airplane from the employee to her hands. She took it and pretended to fly it among the games and rides.

Once again, I had to fight back tears.

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Charlie attended a birthday party last weekend.

 

 

 

 

 

 


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.


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.


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 “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.

playground OT

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.


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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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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Charlie’s Music Therapy

Lately, many readers have expressed curiousity about Charlie’s music therapy. In the following post, I try to answer the questions that have been asked.

After lock down last year, Charlie and I ventured to her first baby group. It was an experiment. She had serious sensory issues and her motor skill progress was at a stand still. I was looking for more ways to stimulate her in addition to Early Intervention. To my surprise, the baby group session went well… especially the musical portion.

100_1005_editedInspired by the success, I scoured the internet for a local baby music class. My web search led to a local non profit organization called The Community Music School of The Piedmont. The music school offers music therapy and a Music Together class as well as other programs.

Charlie was almost a year old but had the motor skills of a four month old. I was not sure she could keep up with the rest of the Music Together class. Plus, I was concerned about her low sensory threshold. I sent an email to the school and asked which program would be the best fit for Charlie. The response was an invitation to sit in a Music Together class and to meet the music therapist. After Charlie and I met the music therapist, I immediately knew that music therapy was where she belonged.100_1007_edited

Every Wednesday for the last nine months, Charlie has attended music therapy. She has benefited in several ways.

First, her sensory threshold has improved. The therapist has actively worked with Charlie on improving her tactile defensiveness and auditory tolerance. Charlie likes to feel the vibrations as she plays the drum, while the therapist plays the guitar, or the time a cello was played in her presence. The therapist also uses feathers, scarves, stuffed animals, and a bead bag in the musical play. 100_1030_edited_edited

Additionally, her motor skills have progressed. There have been a few times when something was not registering with Charlie in PT or OT. For whatever reason, she did not understand the skill the EI therapist was trying to teach. The music therapist teaches similar skills using musical instruments. In music therapy, it is like seeing a light bulb go off above Charlie’s head as she understands and performs the skill for the first time.

Finally, Charlie’s speech development has benefited from the music therapy. Before Charlie 100_1037_editedlearned to open her mouth to vocalize sounds, she grunted to fill in a pause while the therapist sang. Now, she tries to fill in a missing word with the few sounds she has mastered.  Charlie started “singing” before she tried to talk.

Whether Charlie progresses to learning an instrument or not will be a choice left up to Charlie. Music therapy is right for us. Charlie enjoys music therapy and gets quite a bit out of it. Sometimes, she says, “Yay!” when I pull the car into the school’s parking lot.

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I Was Thrilled With “Ma ma”

Charlie has a speech delay. Things have progressed slowly as we focused on her feeding challenges. I was thrilled when she started using “ma ma” consistently a few months ago.

More recently, she has been speaking what we refer to as “gibberish”. She looks at us as if to say something and proceeds with a sentence length of garbled sounds. We respond as if we understand but mostly dismiss that it truly has any meaning. Things changed on Friday when she revealed to us how much she really knows.

Charlie and I were rough housing in her play room after dinner. I grabbed a toy from her and exclaimed, “I’ve got it!” She pounced and squealed out, “Ah gonna git it!”

I froze with shock. Did I really hear that? Did she just say a coherent sentence? Is it just wishful thinking? Charlie’s dad was in the next room. Perplexed, I called out to him, “Did you hear that?” He confirmed that he did.

We had a feeling that Charlie understands quite a bit. However, we could not be sure. While I think she has the words, her oral motor skills seem to be the source of her speech delay.

Now, we strain harder to understand her “gibberish”. Friday evening was definitely the encouragement we needed to continue working on her sounds. It won’t be long before we complain about her talking too much.

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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.


Progress Update

A couple of weeks ago, Charlie had her annual IFSP review. Normally, I dread these meetings. This past meeting was different. There was some exciting news along with the usual juggling act.

Charlie was assessed as having cognitive and social skills equivalent to her actual age. At her last pediatrician’s appointment, the pediatrician commented to Charlie, “It is just a matter of getting your body to do what you want it to.”

Charlie’s motor and speech (which includes feeding) skills are very slowly progressing. Nevertheless, they are progressing.

Currently, the task Charlie is having the most difficulty with is learning to walk. She repeatedly tries but falls each time (she has busted her face a few times). Instead, she has found ways to compensate. She walks on her knees or uses a baby sized chair like a walker. So far, it is unanimous among her regular health care providers that an orthotic will be helpful.

Tomorrow is a big day. Charlie has an appointment with her developmental pediatrician. My hope for the appointment is that options will be evaluated to help Charlie progress forward and learn to walk.

Until she successfully walks, I will continue to teach her how to pick herself back up.

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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


Slightly Burnt

Every week Charlie works on PT, OT, speech/feeding therapy, and attends music therapy. She frequently has specialist appointments or sees her regular pediatrician on the days without therapy. In the quest to solve Charlie’s mystery feeding issues, additional appointments and specialists are scheduled. I hit a wall last night. What is a mother to do when that happens?

Desperate for a break, I trimmed the scheduled appointments to a bare minimum the rest of the week (two left after today). This afternoon, Charlie and I went to the park to meet up with my moms group.

It was exactly what Charlie and I needed.

Charlie was delighted to have another opportunity to play with more kids. I was rejuvenated by the conversation from the other moms. Not only do I get ideas, understanding, and solutions from the other moms but I’m able to feel normal and have a sense of belonging. Inclusion is something that I have struggled with since Charlie’s birth. I finally feel like we belong somewhere. That is a really big deal. Especially, on days that I need downtime such as today.

After our trip to the park today, I feel less weary. Charlie has two appointments left this week to address her feeding difficulties. I’m hopeful we will receive some useful information. For morale’s sake, I need a tiny bit of progress or promise so I can resume the rigors of our regular schedule.

What do you other moms do when you burn out?

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Charlie playing in the park today.


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