Charlie was invited to a gymnastics themed birthday party. “How fun!” I thought when we received the invitation. I wasn’t sure how Charlie was going to participate but I knew she would enjoy it.
The party was Saturday. Charlie was the smallest of the preschoolers that ran through the gym while the instructor set up mats. The other kids seemed bigger, possibly older, and had a more advanced skill set. To top things off, Charlie fell on her face before things even really began.
I assumed I would have to help Charlie participate. I was mostly wrong. After I helped her with hand over hand direction during the warm ups, I stood beside Charlie as she waited in line behind three other kids. In turn, each child ran down a mat, jumped on a trampoline, and performed a somersault on a sloped mat (all with the instructor and her assistant on stand by to help).
Charlie watched the kids before her and was ready for her turn. I said, “Go Charlie!” and held my breath. She ran down the mat, stepped up on the trampoline, jumped in place, moved to the sloped mat, and performed a somersault. Afterwards, she clapped for herself and ran towards me.
“Do you want to do it again?” I asked. ” ‘gain!” She yelled back.
I stood beside her in line, but it was unnecessary. Charlie seemed to understand the concept of the line and waiting her turn. When she was up front, she expertly raised her hand to let the instructor know she was ready. The instructor responded with a raised hand. I whispered, “Go!”
Charlie squealed with excitement the entire sprint down the mat. The instructor helped her on to the trampoline and off again after several jumps. Charlie decided to log roll instead of somersault down the sloped mat. Next, a low balance beam was added to the course. Charlie counted her steps on the beam as she held the instructor’s hand. Like before, she proudly ran back to me and blurted out, ” ‘gain!”
Charlie enthusiastically performed the routines over and over again. Each time she laughed, clapped, and squealed with excitement. She loved this party.
I found out afterwards that Charlie could attend a half hour class for five dollars. Today, we gave the class a shot.
Charlie enjoyed today’s class as much as the party. The instructor and her assistants seemed to understand where Charlie is skill wise and provided assistance as needed.
There was one little girl in her class whose mother worked intently with her on each element. She performed each step expertly and will probably go on to compete in gymnastics. That is most likely not in the books for us.
For me, my goal is simple. I wanted Charlie to have fun. If she learns to follow directions, learns to wait her turn, and grows stronger, that’s all a happy by-product.
I have a new favorite Sunday afternoon activity. It is watching Charlie squeal with delight as she runs towards her next tumble.
I was unable to take pictures during gymnastics class because I had my hands full. This picture is a leaf she found while we were on a walk.
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.
Today, she explored the state arboretum for the first time out of the stroller.
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’s second birthday is approaching quickly. For the past few months, I’ve been on the look out for birthday gift ideas. Buying toys for Charlie is tricky. I suspect it is for many kids with special needs. Every child is different. There are different abilities, interests, therapy goals, and needs. In Charlie’s case, size is an important consideration. Here are three sources that have been helpful with generating ideas:
1)Toys R Us Toy Guide For Differently-Abled Kids: I’ve used this to find ideas for the past two Christmases. In addition to the online copy, they have a hard copy in the store. This handy guide is a great starting point from which to shop or build ideas.
2)Discovery Toys Special Needs Toy Guide: A Discovery Toys Educational Consultant was at the most recent March For Babies we attended. The display toys intrigued Charlie and were the type of toys she generally enjoys. At home, I looked at the website for possible birthday gifts. During my search, I found out the company has a special needs guide which I found helpful.
3)Go Baby Go!: Today, I discovered Go Baby Go! It is a project at the University of Delaware that adapts motorized toys for kids with special needs.
I took Charlie to the USA Science and Engineering Festival. I knew, going in, that it was going to be extremely crowded and Charlie was too small for most of the interactive exhibits. My main goal was to collect science themed coloring books, story books, and activities (like paper airplane kits) that we could do together at home.
After walking through row after row of exhibits (and having to explain that Charlie was older than she looks as I collected coloring books and paper airplanes for what people thought was a baby), Charlie let out a squeal. We had come across an exhibit with a ride on toy.
The lady working behind the exhibit table asked Charlie if she liked it. Charlie smiled and clapped as I explained (for what felt like the millionth time) she was older than she looked. The lady responded by asking Charlie if she’d like to ride on the toys. To Charlie’s delight, the lady helped her ride both of the toys in the exhibit. I found out about the project and their amazing work afterwards.
Today, 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.
Following 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.
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.
She 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.
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.
As most know, Charlie has been trying to walk for the last couple of months. She is tempted to try each time she sees another toddler walking. Her most recent unsuccessful attempt occurred after she watched the birthday boy take some of his first steps on Saturday. After her fall, I picked her up and comforted her as she cried out of frustration.
As a parent, it is a tough thing to repeatedly watch. That is why I was delighted to learn today that her Ankle Foot Orthotics (AFO) have arrived. She will receive her AFOs next week.
While I am excited for Charlie, I am also afraid to hope. What if the AFOs are not as helpful as hoped? What if the issues holding her back are more extensive than the muscle tone in her feet and ankles? Quite honestly, I’m a little anxious.
So far, Charlie’s inability to walk has been the most difficult milestone to watch her struggle with. Socially, there is a large divide between the toddlers that can walk and the babies who can’t. Charlie is aware that she should be a walking toddler.
I hope next week’s AFO fitting will be the first step in helping Charlie become that walking toddler. I am apprehensive that it may not be. If it isn’t, I don’t know how I can remain positive for her when I will feel so discouraged.
As a physical therapy activity, Charlie climbs the stairs frequently. This was one of the first times that she did it.
After a very busy day today, Charlie and I retreated to my bedroom for an impromptu girls’ night. She sat perched in her bouncer and gnawed on a bread stick to soothe her teething gums while I scanned some things on my lap top. Finally, we were relaxing. I scrolled through my email and browsed the numerous message boards that I lurk on.
The message boards can be helpful as a place to rant to others that understand or loaded with useful advice and guidance from others who have been there. On the other hand, it can also be somewhat discouraging.
Almost daily, I see posts from parents who gush about their preemies that have “caught up” or no longer have health concerns. I am happy for them. I would be lying if I claimed I don’t hope we get there one day. However, I have noticed an unspoken void. I wonder why I don’t see posts that read like this:
My twenty six weeker was born weighting 790 g. Now, at sixteen months, she has been diagnosed with spastic diplegia due to PVL, a feeding disorder, minor vision concerns, sensory issues, and a speech delay. She has come a very long way since coming home from the NICU. She is very bright and has “caught up” in the cognitive and social areas. We have a great time laughing, singing, playing, and dancing together. Even her therapeutic exercises are mostly fun. I am so proud of her and couldn’t love her anymore. I, truly, am blessed.
(Now, for the before and after pictures that usually accompany these type of posts.)
Why are the babies (and children) who don’t catch up celebrated in private? These are the posts that would actually give me hope (rather than a discouraging pang of envy). These are the parents who can tell me that things can still be alright. One day, I will have the audacity to make such a post. I want others to know that even if their babies don’t “catch up” or have long term issues… life can still be pretty grand.
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.
Following Monday’s post, I have received various questions concerning Charlie’s AFOs (ankle foot orthotics). In this post, I’m going to address those questions by recounting Charlie’s process of obtaining her AFOs.
Charlie walking on her knees.
Charlie’s Early Intervention therapist first suggested AFOs for Charlie. She had been trying to stand for a few months and failing. In addition, she started compensating by walking on her knees, leaning heavily on a toddler chair as a walker, or hanging on the side of her play pen.
Upon receiving the suggestion, I made an appointment with Charlie’s developmental pediatrician. In the meantime, I sought opinions on the matter from her other health care providers during our regularly scheduled visits. Ultimately, everyone agreed that she would benefit from AFOs.
Charlie’s developmental pediatrician examined her and discussed the etiology of the concerns. He wrote the prescription and directed us to the prosthetics and orthotics department.
The AFOs will be made around a mold of Charlie’s ankles and feet. Casts of her legs were formed from which the mold will be made. Her legs were wrapped in strips of wet fabric that hardened to produce a cast. The cast was cut and carefully removed. The entire process took about twenty minutes.
Charlie had the option to choose the ribbon pattern, the colors of her straps, and the padding color (available choices here). Despite my efforts to influence her choice (I wanted colors that would match her clothes), she chose the “batter up” pattern. It was important to me that she had some say in the matter. After all, they are HER orthotics.
With the exception of strap color and design, Charlie’s AFOs will be very similar to the image on the left. She can begin learning to walk when they arrive in three to four weeks.
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.
Yesterday, the early intervention therapist started the conversation about Ankle-Foot Orthotics (AFO) for Charlie. While I was hoping it was something that could be avoided, I knew it was a possibility. Her developmental pediatrician mentioned that Charlie may need orthotics when he first assessed Charlie.
A couple months after Charlie was discharged from the NICU, something was awry with her motor development. The first indication was torticolis that was discovered while she was hospitalized for a feeding issue. Consequently, she was enrolled in PT through early intervention. Shortly there after, her arms and hands were rigid while there was something unusual with the muscle tone in her legs. Furthermore, she had missed her expected milestones. After discussing my concerns with her regular pediatrician, we agreed a developmental pediatrician’s opinion was needed.
After a thorough evaluation by the developmental clinic, it was noted that Charlie was delayed in gross motor, fine motor, speech, and feeding. Additionally, it was documented that she had sensory issues. She has made amazing progress since the initial evaluation through PT, OT, and speech therapy. The improvement was so great that I hoped orthotics were no longer in the picture.
Unfortunately, it seems that Charlie is stuck once again. She has learned to pull to a stand. However, for some reason she is limited to only standing for a few seconds on her toes. She will “walk” on her knees. Since she has vision problems affecting her depth perception, there was the possibility her new glasses would help. But, there has been no improvement in her ability to stand or creep.
Her therapist has recommended that we look into the possibility of AFOs to aid Charlie. I am not sure how I feel about it. Part of me is worn by the thought of additional appointments, I feel sad for her that she has to learn to tolerate another device, another part is frustrated that I can’t find the solution as to why progress halted, and the last part is hopeful that this will be what she needs to move forward.
With that hope, I made an appointment with Charlie’s developmental pediatrician to discuss AFOs and this recent development. This may be how she learns to walk. At the beginning of her therapy, I wondered if she would even be able to do that.
Tonight, is an extremely quiet night. My husband went camping with Kaia (our dog), Charlie has fallen asleep, and the cat is curled up downstairs. The silence infused with Charlie’s rhythmic snoring reminds me of late nights in the NICU a year ago. I spent many nights with Charlie at the second NICU. It was an amazing place.
After two months of begging each morning, “Please don’t let anything bad happen today”, Charlie was deemed a “feeder-grower”. I was reminded to “Never trust a preemie” but told it was no longer necessary for her to remain at the very large level IV NICU.
For her third month, we had her transfered to another hospital which was closer to our home and my husband’s work. The NICU at that hospital was incredible with many great features.
Most importantly, it had private rooms. I was able to sit with Charlie and did not feel like I was in the way. Nor was I crammed into a corner and sandwiched between Charlie’s and another baby’s isolette. Her room had its own (reclining) chair. Therefore, it was not necessary to scavenge for one each visit like in the open NICU. We were allowed to participate in kangaroo care as desired without interruption. Whatever else was going on in the NICU did not impact our visit like at the other NICU. At night, I had the option to sleep in the recliner beside her isolette. It was comforting to know that I did not have to leave her if I did not want to.
Charlie’s new room gave us our privacy back and we started to feel human again. We were no longer subjected to the prying eyes over other babies’ visitors nor hear painful thoughtless comments from the same people. I did not have to endure the horrible experience of a NICU waiting room with unattended children and inconsiderate individuals. It was much quieter in the second NICU.
We were encouraged and allowed to provide most of Charlie’s care. Because I was able to stay with her comfortably, I was present to perform most of the hands on care and feedings. My husband was able to give her a bath for his first time and he often read her stories.
At this NICU, she began to feel like OUR baby. We started to make memories. I felt involved in Charlie’s care.
There was more continuity of care at the second NICU. Charlie regularly saw the same neonatalogists. They knew which doctor was scheduled to see her next and they communicated adequately with one another. That was a big difference from the larger hospital where Charlie’s case was handed off frequently and they usually did not know to whom.
The physical and occupational therapists were phenomenal with Charlie. They saw her often, made suggestions, and took time to teach me skills. They provided a one on one infant massage class for me, showed me how to position her, provided a book on preemie development, and answered questions.
We got to know the small nursing staff well. They helped us prepare to take Charlie home. They taught us about using a car seat with a small baby, administering medications, infant CPR, feeding, and small baby care. They were amazing people. I still think about them quite a bit.
There were things that I did miss about the first NICU. I missed a few of the nurses and the March of Dimes NICU Family Support. However, I was pleased with our decision to have Charlie transferred. The second NICU was where we, as a family, began to heal.
Overall, Charlie’s admission to her second NICU was instrumental in empowering us to care for her. The experience there helped me to feel competent and become confident in my new role as Charlie’s mommy.
My husband bathed Charlie for his first time.
This was taken a few weeks after the bath picture on the day Charlie turned five pounds.
During Charlie’s first year, there were (and still are) many unanswered questions about her future. Will she be disabled? Will she have chronic health concerns? Will she have long term special needs? In order for me to acclimate to my new reality, I needed information. I found it strange that there have been very few people willing to discuss possibilities other than a full recovery.
The lack of discussion started with the NICU consult. When Charlie’s early birth was imminent, a neonatalogist stopped by my hospital room. He handed a sheet of paper to me with Charlie’s odds of survival based on gestational age and weight. Under his breath, he alluded to the possibility of long term disability. He did not say anything more about it.
After Charlie’s birth, I was repeatedly told how she was going to be “fine”. Additionally, many of the preemie books are filled with stories of babies who are born prematurely without long term consequences. None of which, helped me understand and accept our new world. For about the first month and a half, I struggled to feel like things were going to be OK even if she survived.
Fortunately, I had the privilege of meeting and talking with a NICU mom of a baby with a trisomy. We talked about our babies and our babies’ “what ifs”. The discussions facilitated my understanding that things could be OK. She was among a small minority of people willing to discuss complex outcomes.
Following one such discussion with that mom, I spoke with one of Charlie’s special NICU nurses. I explained how I found talking to the other mom to be beneficial. The nurse answered with a story about a gravely ill baby with very limited function. Admittedly, I do not know the point of the story. I partially listened but was distracted with my own thoughts. As I followed the story, I found myself thinking of all the possible ways the anecdotal baby could interact with the world despite its limitations.
I do not remember how the nurse’s tale ended. I do know that when she finished, I felt better. I realized that no matter what the outcome was for Charlie… she could still have an amazing life. It was then that I decided I would focus on her capabilities.
When Charlie was discharged, no one ever discussed the possibility of further issues. I suppose she was expected to be one of those preemies that catch up quickly and easily. I let myself believe that we were going to have the “normal” baby experience. However, that is not how things worked out. Charlie, (as I had found out later) like many micro preemies, has on going struggles.
Ever since Charlie’s birth, I have wondered several questions. Why is discussion limited to a false dilemma between death and full recovery? Why do I have to consult research literature and other micropreemie parents to find out that Charlie’s outcome is par for the course? Why is there a lack of discussion about outcomes, delays, disabilities, and challenges? Are others aware that silence is more frightening than discussing scenarios and options?
There are advantages to the existence of a dialogue. For example, useful ideas can be spread, the sense of isolation among parents can be reduced, better supports established, parents can be empowered, possibilities explored, and others can gain understanding. It is time that all of the babies are considered. Let’s talk about it.
Yesterday, I had a meeting with Charlie’s services coordinator. We were readjusting Charlie’s therapy services as suggested by the developmental pediatrician from her latest assessment. While doing so, I had to establish new therapy goals. Despite all of Charlie’s most recent successes, I continue to find it difficult to establish goals.
There are several reasons:
I do not want to jinx the roll Charlie is on. I am afraid to assume because she mastered one skill that the next will come easily. In the past, it seems we were confronted with more complications each time I dared to breathe easy.
If I make the goals too easy the whole meeting is pointless. The process will have to be repeated sooner.
With any child, it is difficult to estimate where their skill level will be in six months. The task feels impossible when considering a developmentally delayed baby and there are many questions left unanswered.
I am afraid of the heart break that comes when a goal is too lofty. Sometimes goals can serve as reminders of what she can’t do.
It is hard to walk the line between hope and reality. Finding the balance between what I hope for her future and what is our reality is often difficult.
To aid in the process, the services coordinator had a developmental milestone chart handy. I selected a few (corrected) age appropriate goals and signed the paper work. Most likely, I will not think about the goals until the next meeting. Honestly, I stopped following milestone charts and goals quite a while ago.
Instead, I look for the smallest signs of progress each day. For example, one more spoonful of food tolerated, one more movement attempted, one more sound made, or one more ounce gained. This way, I am prevented from feeling overwhelmed, heartbroken, or discouraged.
Through out all this therapy, Charlie and I strive to have fun. This is higher priority than mastering skills or reaching goals. Like everyone else, she only gets to be a kid once. It is true, each time Charlie achieves a new milestone it is amazing. However, skill set is meaningless if she is miserable. I am a big believer that quality of life is not dependent on one’s ability.
In the end, no matter how many of these services meetings I attend, I am still flooded by thoughts, emotions, and angst by each one. I wonder if these meeting stir up as many emotions for other preemie moms. Or is it just me?
Charlie learned to use her sippy cup this morning. However, she can only really handle it while lying down.
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.
Charlie fell asleep today during lunch in the clinic’s cafeteria.
I took Charlie to the 
Today, 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 
Following 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.
She has trouble sitting up in the stroller.
Cheering on Charlie 