Microcephaly Day | September 30

Microcephaly awareness day is tomorrow, September 30. Although we will never know the actual cause of Sarah's delays, her pediatrician suspects that at some point early in my pregnancy, her brain suffered from a lack of oxygen.

When she was born, she was so tiny despite being almost 1.5 weeks overdue. Barely six pounds and 17 inches tall. I had never held a baby so tiny.

We had never heard the term "Microcephaly" until we began seeing our current pediatrician around Sarah's third birthday. His diagnosis was almost instant as soon as he saw her. The Mayo Clinic defines microcephaly as:

"a rare neurological condition in which an infant's head is significantly smaller than the heads of other children of the same age and sex. Sometimes detected at birth, microcephaly usually is the result of the brain developing abnormally in the womb or not growing as it should after birth." (Mayo Clinic)

I believe that microcephaly is the greater diagnosis rather than the cerebral palsy. I have no medical reasoning other than doing my own research and seeing the effects of it. Sarah's head circumference is 47.6 centimeters which is average for a 20-22 month old. In comparison, a nine year old should have a head size of about 52 centimetres.

The consequences of microcephaly are:

"...depending on the cause and severity of the microcephaly, complications may include: 

• Developmental delays, such as in speech and movement
• Difficulties with coordination and balance
• Dwarfism or short stature
• Facial distortions
• Hyperactivity
• Mental retardation
• Seizures"

(Mayo Clinic)

With Sarah, the most obvious effects of microcephaly are her severe developmental delays. She doesn't act, behave, speak or learn like a typical 9 year old. Instead it's as though we have a 3-4 year old all the time. We have seen that over time, her coordination and balance have improved quite a bit. She struggles to walk long distances so the stroller is still a useful tool in our lives. 

She loves life. Other than a few things that make her unhappy, she is an absolute ray of sunshine in our lives. Her family is her world and many times during the day she will check in with me as to everyone's whereabouts. Sometimes she will just say "mom" to make sure I'm still around. She is so easy to please with a walk, visit to a park or a quick trip out for some fries or a donut. She loves to play with Duplo, wooden trains, and stuffed animals. 

Having a child with a "special needs" label was not something I ever thought I'd have but Sarah has enriched my life in ways that I cannot explain. I am blessed and can't imagine life any other way.

Tuesday Thoughts...

For the past couple of days, I have waited to go to the park with Sarah until the evening. She's on some medication that makes her skin more sensitive to the sun so we've gone out after supper. Last night as I was reflecting and watching her play, I had a few thoughts come to mind. Sarah is nine years old. Her style of play would say otherwise though. As I was observing her it seemed like the word "simple" was one to describe her. Sure there are other things that make her uniquely complex but something about seeing her play outside was simple. She went on one slide over and over again with no need or desire to try anything else out. Part of this is because the amount of louder kids on the other equipment keeps her from venturing too far. After 20 or more "slides", we made our way to the swing, her little hand tucked in mine. The large swing, designed for special needs kids was free and she quickly made her way over. This type of swing allows her to relax and fully enjoy the swinging motion without having to think about holding on or balancing. After the swinging, we made our way back to the now empty climbing structure where she began to take my order and made me coffee, fries, and hotdogs.

She's a quiet observer when she's out. Occasionally she will interact with other kids but only if there's one or two and if they appear to be calm and usually they are younger in age than her but closer to her developmentally. Last night I was her playmate and we had a wonderful evening together. These are the things she remembers and I love being with her, playing and watching her discover the world around her.

The swing that makes her feel safe and secure

Eight Years Old!

Sarah turned EIGHT last month! Oh how the years have flown by and I can't believe how far she's come. I decided to do a bit of a review on her stages and development, if not for my reader's sake, then for my own.

June 22, 2008: Sarah Anne was born. Nine days after my due date she finally made her appearance coming in at 6 pounds, 1 ounce and 17 inches tall. When I first held her, I recall thinking that I had never seen or held a baby so tiny. Doug had to go out and buy a preemie sleeper for her to come home in. One of the things I clearly remember about driving home from the hospital was that she cried the whole way. To this day, she still doesn't like being in her carseat and often pushes or pumps her legs while driving.

August 27, 2008: Sarah had gained her first pound by two months old. Yes, it was at this point that we took her to a specialist regarding her extremely slow weight gain after my midwife suggest we get Sarah checked out.

September 5, 2008: Sarah had a cardiologist appointment this afternoon and were told that she would be given an EKG (electrocardiogram) and an echocardiogram (ultrasound of the heart). Since the patient has to be relatively still for these tests, Sarah was restrained by Doug, myself and one nurse. Yes, it took three adults to keep a spirited 2.5 month old still. We were told that if she didn't settle for the echo, she would have to be sedated and my aching mother's prayer was answered and she took her soother and relaxed for most of it. 

October 10, 2008: (Taken from a previous blog post) Doug and I have just arrived home after Sarah's appointment at the pediatrician (Dr. Lee). It was not a positive event for us. First the stats: Sarah gained 3 oz and 1/2" in height over the last 10 days. Unfortunately her head circumference stayed the same.

We are thankful for the weight gain, but it is still less than half of what it should be. The height increase is good, and put her back on the right track there - but the lack of gain on hat size indicates 

stagnant brain growth. 

We are needing to do more blood work for genetic testing as well as get an appointment for an MRI to determine that her brain and skull are growing as they should. (the MRI will require general anesthetic for Sarah) 

In light of the growth that has been seen, the pediatrician did not think it necessary to admit Sarah to hospital at this point, though that is a very real possibility if these trends don't change. Our next 

appointment with Dr. Lee is on October 22nd and we were given the impression that we should come prepared to hear that Sarah will be put into the first available bed. This is obviously NOT the route we want to travel!

October 22, 2008: (Another blog post) Good evening. Well it was another eventful day at the U of A hospital for us. Certainly a more positive outcome than the last time. 

So, first the stats: Sarah gained 13 ounces bringing her to 8 pounds, 4.2 ounces and yes, I'll count in the .2! She also put on an additional 1/4 inch in length. Her head circumference went up 1/2 cm which is ok but not great yet. She's still falling away from the curve on that end. That being said, we don't need to see the doctor for another 6 weeks!!

Her weight gain is certainly an answer to prayer and we are thankful for every one of them. As for her head... her pediatrician has requested an MRI just to make sure her brain is developing normally even though it is small. This is procedure is probably the most stressful for me now. All I know is that she will need to be sedated and I won't be able to feed her up to four hours before. Then there is all the pre-op work to do as far as getting the IV started and such. The MRI itself is about 30 minutes and then there will be her wake up time before I will be able to see and feed her.

The MRI at this time showed nothing significant.

December 2008: At six months, Sarah was 11 pounds, 3 ounces

May 2009: When she was 11 months old, she began to crawl

June 22, 2009:  At one year old she was 13 pounds and 11 ounces.

December 2009: When eighteen months rolled around she was 16 pounds and started to walk on her own.

** When I think back to this moment, I wonder why I never saw any red flags. All my other kids walked at a normal time and so this was so late. Sarah was also SO very small. I'm sure she was still wearing 9-12 month clothes at her 2nd birthday.**

December 22, 2010: I remember writing in a previous blog post that she wouldn't go to kindergarten in diapers. It makes me smile to look back and think I had no idea what the next few years were going to hold for us. She was 22.5 pounds.

April 2011: Doug and I were beginning to wonder about Sarah's speech and after having it tested, found out that there was a lot more that we would be dealing with.

May 16, 2011: Oh the plethora of information that we received this morning.  There are quite a few issues where Sarah's development is concerned.  In most areas, she is at the age of a 24-25 month old.  In one area (visual recognition) she's at the level of an 18 month old and only in her social skills is she at the correct age.  So in all areas of development, she is significantly delayed.  

July 18, 2011: We had our first appointment with a new pediatrician who deals mainly with special needs kids. This is when our journey into an unknown future began...

September 27, 2011: The doctor's very first diagnosis, without even doing any testing was that Sarah has developmental delays and Microcephaly. Microcephaly means a smaller than average head due to a lack of brain growth. The doctor suspects that early on in my pregnancy, her brain was deprived of the necessary amount of oxygen and she suffered brain damage.  As a result, she will always need special education. She has documented delays in speech, fine and gross motor skill and visual memory. Her condition is chronic and organic. She will not get worse but there will probably come a point when she no longer developed cognitively - she'll most likely need someone to care for her for the rest of her life.

November 24, 2011: We were given the results of the MRI.  Medically speaking, Sarah's "corpus callosum" is slightly thinned.  This means that the connection between the two halves of the brain is not as thick as it should be, therefore causing the delays. In Doug's not so medical terms, he confirmed that Sarah's brain is simply wired differently.  Not wrong or bad, just different.  They also found that there is "periventricular white matter", consistent with "periventricular gliosis", WHICH as I understand, is the cause of her balance issues.  All these findings are likely caused by a lack of oxygen to Sarah's brain while I was pregnant with her.  The doctor told us that his diagnosis for Sarah is a mild form of Cerebral Palsy.  

The next few years were a blur of tests, assessments, doctor appointments tears and prayers. I look back and am so thankful I had the clarity of mind to actually write about it. In fact, I wrote so much, that I can't even really write about it in this blog as it would take too long. 

Our latest very exciting development for Sarah is that she is diaper free. I had started to see signs of her being ready and her "carrot" was a camping trip that we take with our church each year. I told her she couldn't go camping in diapers and within a few days, she was completely done. There were times when I was sure I would be doing diapers forever. 

I am excited to see what will happen in the coming year for Sarah. I look forward to writing all about her wonderful-ness very soon! 

Newborn

EIGHT!

Pediatrician Appointment {03.03.16}

March is cerebral palsy awareness month. This term didn't mean much to me until the winter of 2011 when after an MRI showed that Sarah had CP which was likely caused by oxygen deprivation while I was pregnant with her. I had heard the term before but on November 25, it became personal. I was the mom of a child with a diagnosis and I now fell into a whole new category of "special needs". 

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.

CP is usually caused by brain damage that occurs before or during a child's birth, or during the first 3 to 5 years of a child's life. There is no cure for CP, but treatment, therapy, and special equipment can help a child who is living with the condition.  Cerebral palsy affects muscle control and coordination, so even simple movements like standing still are difficult. Other vital functions that also involve motor skills and muscles such as breathing, bladder and bowel control, eating, and learning may also be affected when a child has CP. Cerebral palsy does not get worse over time.

Cited from this LINK.

Sarah experiences many of the symptoms of cerebral palsy such as motor skills (fine and gross), bladder and bowel control, eating issues (very sensitive to certain textures) and learning delays. A lot of the issues also come from the severe microcephaly, causing her head to be considerably smaller than those of her peers. In fact, a few days ago I bought her a new sun hat - sized for 2-4 year olds and it's still big on her. She has been wearing the same hat for years because her head has been growing at such a slow speed. Although she could have used the same one as the past 3 years, I decided it was time for a new hat anyhow! 

Earlier this month Sarah had her six month check up at the doctor's office and as always, I like to keep a record of her growth patterns and such. 

She now:

• weighs 42 pounds (3rd percentile)
• is 3 feet, 10 inches (4th percentile)
• has a head circumference of 47.6 cm (-3.2 standard deviation)

The visit to the pediatrician went fairly well until the doctor attempted to take her blood pressure. For some reason, that terrifies her and so we skipped that part of the exam. Everything else seemed fine and we were on our way after that. 

She's still growing and developing at her own rate. I think she's still pretty little for a 7½ year old  and I think the kids, Doug and I still like that she fits in our laps so easily yet. I know for a fact that the other three kids couldn't snuggle the way she does. 

This picture was taken the week after we were at the doctor's office when Sarah, her sisters, brother and I were all down with bad colds for a week. As much as I don't like her being sick, it was a special treat to have her nap in my arms nearly every day!

This Week (A Raw and Real Post)

Lately one of Sarah's activities includes taking apart her toys. I mean she's taking the hair off her Playmobil people and disassembling every. single. item. And this week, it brought me to the brink of frustration. Frustrated that she doesn't play with toys for their actual play value, rather getting enjoyment out of taking them apart with no interest or desire to reassemble them. Why? I have no idea.

It was on the weekend where I cried to Doug after we had gone to our room for the night as the grief loomed over me once again. I was so disheartened that she can't or won't use the toys appropriately. It makes my heart ache as I watch her play in such a toddler-like fashion. I was angry that things have been bought for her and she isn't able to use them for their purpose. I ask myself many times over as to what would be a better play thing for her? What would she enjoy playing with? And nothing comes to mind. I simply draw a blank. She likes playdoh but can only do that for a certain amount of time. She loves playing in water but I can't have her sit in the tub all day either. When I see kids her age and younger exceeding her academically and developmentally I am saddened by it once again. It means that homeschooling her requires my imagination, creativity and time so I can create a unique to her curriculum that will help her learn about her world.

I have learned (and am still learning) that I can feel this way. It is okay for me to be hurt and to cry over this stuff. I occasionally feel helpless and that transforms into guilt. But I am doing the best that I can for Sarah. I am a good parent and the best one for her. I also have to remember to separate Sarah from her diagnosis's. Cerebral palsy, microcephaly and developmental delays are what Sarah has, not who she is. These have become part of our "normal" and are simply a part of our lives now. We are learning to adapt to her and her needs, like needing to go to a different park because there are too many kids already or because construction crews are running their loud machines close by. I am grateful for the flexibility of a friend who made it so simple to pack up and find a new place to play.

After I let it out, Doug reminded me of the wonderful things that Sarah does. By simply taking her camping last week, I gave her the "best day ever" every morning. It takes a drive to a park with sand to delight her and make her day complete. And when the day comes to an end and her teeny little arms wrap tightly around my neck I am reminded once again of the amazing gift that she is.

As Doug said to me earlier today, perhaps those joys are made all the sweeter because they come in spite of, and likely because of who God made her to be.

SEVEN!

Seven years ago today, the tiniest baby I have ever held was placed in my arms. At six pounds, one ounce and only 17 inches tall, you were by far our smallest baby. On that night, I had no idea of what the next few years would bring. It took us till you were almost three years old to realize maybe something was a little unique about you. Through a myriad of testing and appointments, the final diagnoses were: severe microcephaly (small, underdeveloped brain), cerebral palsy, sensory processing disorder and severe global developmental delays. These last few years have been such an educational experience for our family and I am beginning to be less upset when I think of what you've gone through. We have watched you learn so many new and wonderful words and each new phrase brings us so much happiness. We have learned to take great delight in even the smallest achievements- perhaps things that would have gone unnoticed with the other kids. You are pretty easy going and simple things please and delight you.
Some of your favorites at 7 years old are:

• bubbles
• helium balloons
• your siblings
• Kraft dinner
• Kayla
• iced tea
• playmobil
• Grandma
• playgrounds
• going to church and the people there
• Lucy, Rosie & Ben
• the many stuffies you have
• hug-uppies
• Curious George
• goldfish crackers
• cheerios
• play doh
• anything outside
• my coffee

 You were so amazingly cute, I could hardly handle it!

 Three years!

 FOUR!

 Five!

 Six years!

My most favorite, treasured picture ever!

Today we are enjoying Sarah's seventh birthday! Actually, we started celebrating last Thursday when we had a family party but it's been a fun weekend for her. She loved being sung to at church and each gift was received with a huge "Thank you!"

 The biggest helium balloon I could find!

So excited and thankful for the cupcakes. Which she didn't eat.  

So unbelievably happy to be opening presents. Playdoh, a slinky, Fruit Loops, books and Smarties.

Her joy makes my day!

On Sunday, our little church sang to her and she clapped with delight at the end. We also make a short stop at Grandma's house since Grandma was recovering from her small heart attack earlier this month. On Monday her two cousins came for some birthday treats and a visit and then in the afternoon, her friend also came over for a little while. She was able to see all her favorite people in a short amount of time. It was so much fun to celebrate her! 

Oh little daughter of ours, how we love you! Hearing you say "best birf-day ever Mum" made my heart so happy. 

Happy seventh birthday Sarah!

Three Years Ago

It was on this day in 2011 when Doug and I sat in the pediatrician's office waiting to hear the results of Sarah's most recent MRI which had been a couple weeks earlier. I can remember entering the room and expecting or hoping that we'd be told that the tests showed nothing abnormal. I can also recall the shocked and slightly stunned feeling when he delivered the news to us.

This is what I wrote three years ago:

"Medically speaking, Sarah's "corpus callosum" is slightly thinned.  This means that the connection between the two halves of the brain is not as thick as it should be, therefore causing the delays. In Doug's not so medical terms, he confirmed that Sarah's brain is simply wired differently.  Not wrong or bad, just different. They also found that there is "periventricular white matter" , consistent with "periventricular gliosis", which is likely the cause of her balance issues. All these findings are likely caused by a lack of oxygen to Sarah's brain while I was pregnant with her.  The doctor told us that his diagnosis for Sarah is a mild form of Cerebral Palsy."  

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.

CP is usually caused by brain damage that occurs before or during a child's birth, or during the first 3 to 5 years of a child's life. There is no cure for CP, but treatment, therapy, and special equipment can help a child who is living with the condition.  Cerebral palsy affects muscle control and coordination, so even simple movements like standing still are difficult. Other vital functions that also involve motor skills and muscles such as breathing, bladder and bowel control, eating, and learning may also be affected when a child has CP. Cerebral palsy does not get worse over time.

(Information taken from this SITE)

So, back to present day. Where are we now and what have we learned? Over time, the shock wore off. I was reminded by family and friends that the label doesn't change who Sarah is, nor does it define her. We went through two and a half years in the Early Intervention Program until Sarah turned five. They were memorable times and I learned a lot about how Sarah was and is developing. 

Sarah experiences most of the symptoms that CP displays. Her learning is slower than others which is also due to the severe microcephaly, but that's another post in itself. She has a very unbalanced diet which is high in carbohydrates and low in meats and veggies. It's not for a lack of effort on my part that's for sure. Her muscle tone, movements and motor skills are also compromised because of the cerebral palsy. 

I am thankful that she knows no different though. What Sarah lacks in many skills, she excels in others. She can love in ways that even I can't comprehend. She is loveable, charming and a delight to be around. Her laugh is contagious and she knows how to make anyone smile. She loves going to church and the people there have become like her second family. She is so eager to play outside with her friend Mr. Bruce and she even brought her snow clothes to church on Sunday so he could take her out. She loves people deeply and many of them have a special place in her heart.

As for me, there are occasionally moments and even days where I find myself hurting inside again. It's tough to know that she likely will not ever meet her peers' developmental level and always be behind. In fact, that gap will continue to get larger as time goes on. Watching her alongside other kids her age or even younger is hard at times. 

But, I am so thankful for the encouragement of friends and the love and support they provide. It's been quite the journey so far and I look forward to seeing where we continue to go.

Third Anniversary

May 16th marked the third anniversary of the day that "normal" was redefined for us. I blogged about that day HERE. Now I'm not totally sure why I didn't write this post on Friday, I think I got my dates mixed up.

I can still see so clearly in my mind about how that very first home visit, which consisted of a DISC (Diagnostic Inventory for Screening Children) assessment had gone. I had no idea what to expect of this visit and when I saw how low Sarah scored on the tests, I was devastated. We were told that she was anywhere from 8-18 months behind kids who were her age. It was quite the blow to hear from someone that our daughter wasn't developing typically.

The months and years that followed consisted of biweekly home visits from our Early Intervention Coordinator which were times full of play ideas, tips and encouragement. I think initially I was resistant to Wendy, possibly because I wanted to deny that anything was different with Sarah. As time went on, I found her to be someone who was an encourager, supporter and cheerleader for me. I was learning to be strong for Sarah and to fight for her. I am so thankful for the times Wendy, Sarah and I had together and I believe she was a vital part of our lives for that time. It was sad to say good bye to her when Sarah turned five.

This day marked the beginning of a whole new chapter of life for us. We would quickly learn words like cerebral palsy, severe microcephaly, severe global developmental delays, intervention, special needs and more. Although these words do not define who Sarah is and they are a part of of our lives, she didn't change that day, simply because a label was given.

Sarah continues to be a blessing to Doug, myself, our family and to just about anyone who meets and knows her. Our life took a detour that day. We are on a different journey than we may have thought we would have been and although it hasn't all been easy, we have conquered many mountains and milestones. We celebrate each victory with enthusiasm, no matter how small. The other day, Sarah picked me a dandelion bouquet for the first time and it was such a precious gift to me.

Today, I don't know where she is as far as her developmental stages are. She certainly acts and speaks considerably younger than she is but I have no tools to base that on. If I had to guess, I'd place her around 3.5-4 years old, depending on the skill. And today, that's okay. She is perfect in God's eyes and she is exactly how he wants her to be.

Cerebral Palsy Awareness 2014

Today is Cerebral Palsy awareness day. Something I knew very little about up until a few years ago.

November 24, 2011. Sarah received a diagnosis of cerebral palsy, which was likely caused by oxygen deprivation early on in my pregnancy. Up until this point, I'd only heard of that term and on that day, it became personal. Medically speaking, Sarah's "corpus callosum" is slightly thinned.  This means that the connection between the two halves of the brain is not as thick as it should be, therefore causing the delays. In Doug's not so medical terms, he confirmed that Sarah's brain is simply wired differently.  Not wrong or bad, just different. They also found that there is "periventricular white matter", consistent with "periventricular gliosis", WHICH as I understood, was the cause of her balance issues. Over the past few years, Sarah's balance has become more stable, although she is much more "stumblier" than other kids her age. We still tend to wince as she runs around corners or walks past the corner of the counter top. 

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way). Cerebral palsy can also lead to other health issues, including vision, hearing, and speech problems, and learning disabilities.

CP is usually caused by brain damage that occurs before or during a child's birth, or during the first 3 to 5 years of a child's life. There is no cure for CP, but treatment, therapy, and special equipment can help a child who is living with the condition.  Cerebral palsy affects muscle control and coordination, so even simple movements like standing still are difficult. Other vital functions that also involve motor skills and muscles such as breathing, bladder and bowel control, eating, and learning may also be affected when a child has CP. Cerebral palsy does not get worse over time. (Cited from here)

What is Cerebral Palsy?

- While cerebral palsy is a blanket term commonly referred to as CP and described by loss or impairment of motor function, cerebral palsy is actually caused by brain damage. The brain damage is caused by brain injury or abnormal development of the brain that occurs while a child’s brain is still developing before birth, during birth, or immediately after birth. 
- Cerebral palsy affects body movement, muscle control, muscle coordination, muscle tone, reflex, posture and balance. It can also impact fine motor skills, gross motor skills and oral motor functioning.
- Current research suggests the majority of cerebral palsy cases result from abnormal brain development or brain injury prior to birth or during labor and delivery.
- An individual with cerebral palsy will likely show signs of physical impairment. However, the type of movement disorder, the location and number of limbs involved, as well as the extent of impairment, will vary from one individual to another. It can affect arms, legs, and even the face; it can affect one limb, several, or all.
- Cerebral palsy affects muscles and a person’s ability to control them. Muscles can contract too much, too little, or all at the same time. Limbs can be stiff and forced into painful, awkward positions. Fluctuating muscle contractions can make limbs tremble, shake, or writhe.
- Balance, posture, and coordination can also be affected by cerebral palsy. Tasks such as walking, sitting, or tying shoes may be difficult for some, while others might have difficulty grasping objects.
- Other complications, such as intellectual impairment, seizures, and vision or hearing impairment also commonly accompany cerebral palsy.

Cerebral palsy is non-life-threatening: With the exception of children born with a severe case, cerebral palsy is considered to be a non-life-threatening condition. Most children with cerebral palsy are expected to live well into adulthood.
Cerebral palsy is incurable: Cerebral palsy is damage to the brain that cannot currently be fixed. Treatment and therapy help manage effects on the body.
Cerebral palsy is non-progressive: The brain lesion is the result of a one-time brain injury and will not produce further degeneration of the brain.
Cerebral palsy is permanent: The injury and damage to the brain is permanent. The brain does not heal as other parts of the body might. Because of this, the cerebral palsy itself will not change for better or worse during a person’s lifetime. On the other hand, associative conditions may improve or worsen over time.
Cerebral palsy is not contagious; it is not communicable: In the majority of cases, cerebral palsy is caused by damage to the developing brain. Brain damage is not spread through human contact. However, a person can intentionally or unintentionally increase the likelihood a child will develop cerebral palsy through abuse, accidents, medical malpractice, negligence, or the spread of a bacterial or viral infection.
Cerebral palsy is manageable: The impairment caused by cerebral palsy is manageable. In other words, treatment, therapy, surgery, medications and assistive technology can help maximize independence, reduce barriers, increase inclusion and thus lead to an enhanced quality-of-life.
Cerebral palsy is chronic: The effects of cerebral palsy are long-term, not temporary. An individual diagnosed with cerebral palsy will have the condition for their entire life.

**All information on this post was taken directly from MY CHILD.  I do not claim any part of this is as my own** 

There are many different degrees of cerebral palsy, with a large spectrum. Sarah falls on the mild end. Most of her delays are caused by the severe microcephaly while the CP causes her balance to be off a bit. I think it is also the cause of her weaker muscle tone in her legs and why she drags her toes when she walks. 

I have gone through a lot of moments of grief and sadness over the past two years. Some days, I'm still really sad that she will never catch up to her peers, and rather the gap will continue to increase. They will get further and further ahead and while Sarah will develop, it will be at a much slower pace than them. I am sad for what opportunities she may not have and I worry about how others treat her, especially since she acts so much younger than five.

It only takes a glimpse of her and her amazingly contagious smile to see what a blessing she is to me. She is almost always joyful. She shines with happiness and frequently checks in with her family with a "Are you happy?" She is easy to please and loves life. As long as there is Curious George, her baby, bananas and pink cheerios, then that's all that matters in her little world. I am blessed!