Category Archives: CP

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.


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.

 


Spring Fever

The weather has been nice this week. I believe Charlie and I have a bad case of spring fever. She asks to go outside and I happily oblige.

During the two hottest days, she played in the Shenandoah River. She cried each time she had to come home.

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Today, she explored the state arboretum for the first time out of the stroller.

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The week has shown me what a huge difference a year makes. This time last year, she was unable to sit without support and we wondered if she would be able to walk. She may not “catch up” by two, but she has come such a long way. Go Charlie, go!

Charlie one year ago.

   Charlie one year ago 

Charlie now

Charlie now


Out Of Left Field

Last week, Charlie’s peripheral manifestations (muscle spasticity in arms and legs) intensified with seemingly no rhyme or reason. At first, I wrote it off as a bad day. I thought she may have been tired or it was the result of a growth spurt. However, it continued over several days. When Charlie chose to crawl rather than walk yesterday, I knew there was more to the issue.

10156073_10101626491704459_480394385_n (1)_editedDuring our outings last week, Charlie carried her arm curled up against her chest and dragged her right leg. I am used to seeing that when Charlie is stressed or tired. It was unusual to see it consistently throughout the day. The following therapy sessions, I asked her therapists for insight. They were as perplexed as I was.

Charlie was her usual happy self despite her body’s betrayal.

The unusual posture and gait continued through the weekend. At yesterday’s speech therapy, I noticed Charlie hardly used her right arm. After therapy, Charlie chose to crawl rather than walk.

I was baffled. She felt poorly enough that crawling was the best option. Yet, she was as pleasant as usual.

Over the course of all this, I exchanged emails with her developmental pediatrician (the clinic is two hours away). We discussed whether or not she should have an MRI. Little kids like Charlie need to be sedated so the imaging involves more complexities than merely an MRI.

With the MRI question in mind, I took Charlie to her regular pediatrician this morning. Based on past experience, Charlie does not communicate when she is ill. I wanted to rule out illness. Additionally, I had more questions that I knew the pediatrician could answer.

Lo and behold, Charlie has another ear infection. There was no fever, no screaming, no stuffiness, nor cough. Nothing to indicate she was sick other than the sudden onset of motor symptoms.

This may be how Charlie tells us that she is sick. I have my fingers crossed that the ear infection is the reason behind all of the changes. Time will tell whether an MRI is needed.

Just when I felt like I was getting into the swing of things this latest issue came from nowhere. One thing is for certain, Charlie keeps me on my toes.

 


A Different Kind Of Needs

Sometimes as parents, my husband and I forget about special issues involved in raising Charlie. They become our normal and we forget that they are not part of everyone’s baby experience. This week, I’ve noticed it more than any other point in time.

Earlier this week, one of my husband’s friends had a baby. My husband was excited and tried to think up the perfect newborn gift. His eyes grew wide and sparkled as he exclaimed, “I know! I will get him a case of those nose sucker things!”

I very gently had to remind him that his friend’s baby will probably not, at any point, be fed through an NG tube. Nor, will the baby have reflux through the nose past age one like Charlie. His friend would likely appreciate two or three of the nose suckers at the most. He paused and said, “Hmmm, you’re right.” and shrugged it off.

Up until that moment, I don’t think it occurred to him that Charlie had different needs than most babies. Or, that his parenting experience had been so different from the norm.

Fast forward to today. This morning, Charlie and I attended a fundraising kick off. Afterwards, I decided to use our Harpers Ferry pass again before it expired tomorrow.

The first time we went (on Wednesday), I did not take her stroller and regretted it. This time, I had her stroller already in tow from the kick off.

Once we arrived, I pushed her around for a while. I had the same problem today that I have each time the stroller has been used since she outgrew the infant seat attachment.

10013007_10101629098645129_32093478_nShe has trouble sitting up in the stroller.

I’ve tried to remedy the problem by placing a rolled up blanket around her head and shoulders. It doesn’t really work. I hoped the problem would be a short term issue that went away as she got stronger. Not so much.

Tonight, I polled my Facebook friends (most don’t have this problem) and received several affordable solutions. I thought I would mention the ideas in case any one else is in a similar position with their little one.

First, my friend recommended getting a wedge cushion from a medical supply store and using it as a stroller insert after making the appropriate sized cut out. Since the cushion only costs $30, this would be the most economical of the options.

Second, another helpful friend recommended this stroller liner.

Finally, there are strollers made specifically for this issue. But, they tend to be pricey. I need to check insurance coverage and so forth.

I will investigate my options more thoroughly, proceed with trial and error, and report back. In the meantime, I’m open to suggestions.

 

 


National Cerebral Palsy Awareness Month

Wow, March is busy! March is also National Cerebral Palsy Awareness Month. Just as with all the other month long celebrations, I am sharing Charlie’s story.

I knew there was something “not quite right” about the way Charlie moved when she had been home from the NICU for a few months. Her hands didn’t open when they should have, she missed all of her motor milestones at her adjusted age, and she was incredibly rigid when she slept. I begged the pediatrician for answers and she started Early Intervention.

Charlie was supposed to be one of those super preemies that left the NICU and never looked back. Because her NICU head scans appeared fine, we were not warned that cerebral palsy was a possibility. It was never discussed with us.

therapy I was blindsided by the delays and did my own research. My best guess concluded we were most likely dealing with cerebral palsy. I learned from my research we could help her. I just needed someone to tell me how.

Shortly after she missed her milestones, Charlie saw a developmental pediatrician. Although he did not diagnose her initially, he prescribed PT, OT, and feeding therapy. Charlie received her diagnosis of spastic diplegia at about eighteen months. Prior to that, I connected with another mom of a girl with cerebral palsy that has been an incredible support and resource (Thanks, Nicky).

After a couple months of therapy, Charlie’s hands opened and she could hold a toy. She learned to roll over a few months later. Things continued to progress with plenty of hard work and lots of therapy. She is now mastering walking. However, the multitude of therapies continue.

Cerebral palsy is a disorder that is a spectrum and affects each person differently. If there is one thing I want other parents of children newly diagnosed with CP to know, it is don’t give up hope. A diagnosis is helpful in order to receive services and understand the nature of the delays. It does not necessarily predict the future.

I’ve been amazed at how far Charlie has come and how much she can do.

walking toddler


Another One Of Those Moments

I’ve been waiting for the right moment to take Charlie to Chuck E Cheese. The place is a bit much for my sensory threshold, so I was concerned that it would be sensory overload for Charlie. On the other hand, I knew she would love the singing mouse, the pizza, and play. I decided to take Charlie while everyone else was watching the Super Bowl.

Despite the nearly empty restaurant, Charlie was a bit overwhelmed when we first arrived. She clung to me, munched on pizza, and watched the few other kids that were there. As she picked apart her second piece, the mechanical mouse started to sing. She was mesmerized. After he stopped moving and singing, Charlie meowed at him.

After the show ended, she was feeling brave enough to play a few games (with my help) and try a few rides. The motor cycle that rocked and vibrated was too much for her. She wanted to get off of it immediately. The seat on the merry go round was her favorite. 1779194_10101540988199169_1473971453_n_edited

We were almost out of tokens when a staff member and someone in costume called for the kids to follow. Charlie gestured and made that weird glottal sound she makes when she wants something. I carried her and we followed the string of kids.

The parade of kids came to a stop in front of the mechanical mouse. The kids formed a semi circle and prepared to sing Head, Shoulders, Knees, and Toes. I knelt behind Charlie and supported her at the hips as she stood.

Charlie can take a few steps at a time but she falls A LOT. She is unsteadier than usual because she is in between AFOs.

The kids started to sing and gesture while I steadied Charlie. Charlie “sang” her own version of the song complete with her own gestures. She wore a huge smile and kept turning around to look at me as if to say “Look! I’m doing it!” It was one of those moments that I had to fight back tears. Charlie finished the song with an enthusiastic “Yay!” I lost the fight and a couple tears trickled down my face but were hidden by the dark.

We finished the evening with sensory play involving cotton candy. Charlie refused to touch the cotton candy and did not want it near her mouth. The evening was far from perfect but I don’t think I could have had a better time. I hope Charlie feels the same.


Then And Now

I do not remember exactly when it began. Sometime around Christmas time last year, I noticed some peculiarities in Charlie’s physical development. She held her hands fisted past the point she should have, she rarely moved on her own, she was unable to hold up her head, she was not strong enough to hold a toy such as a small rattle, and she was rigid even when sleeping.

I remember the sinking feeling I had. It was then that I knew she was not going to be one of those super preemies that caught up by two.

I was frustrated that doctors were hesitant to talk about what was happening with her. I was desperate to talk about it because I knew we could help her and minimize the complications if we acted early rather than “wait and see”. I remember the anger I felt that no one from the NICU warned me that there was a possibility of anything other than her catching up by two. I was saddened as our hopes of leaving preemie life behind were dashed.

That was then and this is now.

I’m grateful for the doctors, the therapist, and the home health nurse that listened to my concerns and helped me find answers. I am glad we discussed the tough questions, devised a plan, and followed through with a course of therapy. While Charlie continues to be delayed, this year I have hope that she may “catch up” someday and find comfort in the knowledge we are trying our best to help her. She has already made incredible progress.

I don’t know how it is going to play out for Charlie but I believe that no matter what happens all will be well.

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Charlie got a doll for Christmas.


Alphabet Soup

Charlie saw her developmental pediatrician today. He agreed with the rest of her health care providers that she would benefit from ankle foot orthotics (AFOs). I was prepared for and expected that part of the exam. However, I was surprised when more letters were discussed in what is the alphabet soup of Charlie’s health concerns.

In addition to the BPD (Bronchopulmonary Dysplasia) and ROP (Retinopathy of Prematurity), her doctor today discussed PVL (periventricular leukomalacia) and resulting CP (spastic diplegia).

I was caught off guard by the PVL discussion. I responded, “But she only had a grade 1 IVH (intraventricular hemorrhage)!” as if my contradictory argument could change things.

In my comfortable naivete, I thought only babies with hydrocephalus or a grade 4 IVH had PVL. Once her doctor explained things to me, it made sense. In short, PVL is one of many possible long term consequences of prematurity.

The CP part of the discussion did not really bother me. Charlie had been home for a few months when I knew there was an anomaly in the way she moved (she couldn’t). Although, I admit, I was hoping that she would do well enough that we could dodge the CP discussion.

What does this mean for Charlie? Not a thing. Nothing changes (other than her new fancy footwear).

She will carry on with PT, OT, speech therapy, music therapy, and all of her play dates. She will continue to laugh, dance, sing, and explore. She will have to work harder and it will take longer for her to learn to walk than most of her cohorts.

Though, that has been the case with most things for Charlie. Greatness does not happen overnight.

sporty charlie


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