Tag Archives: speech

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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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.

 


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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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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