Tuesday, March 1, 2016

What does Mild Cerebral Palsy look like?




The following scenario has become an - almost daily - occurrence. My daughter and I will be out and about, running errands, shopping, what have you, and we get the looks.  I like to think it's just because Fin is so cute. It's not just a regular stare, there's a curious expression behind it and I can feel when someone is about to engage me in the conversation.  The one that starts with, "How old is she?" (Which they are asking me because either I'm assisting Fin with walking or she's using her Kaye-Walker.)  I say, "She's 2 and a half."  Like clockwork they respond with, "Oh really? Why can't she walk? She looks totally normal, you would never know something was wrong with her."  I always smile (some days while fighting back tears) and look them in the eye as I decide on my response.  I've said every different answer a special needs parent dreams of saying, it just depends on my mood that day; "Oh... and what does normal look like?" "Ha! Well thank you for the compliment?" "Aww, thanks.  We're working on it." Like a deer learning to walk, I'm learning to walk in my role as an advocate.  I realize these responses don't help anyone, and usually they just make people feel terrible.  People mean well and I understand their intention.  My child does not look stereotypically disabled.  Which leads me to believe that its not common knowledge to know what someone with Mild Cerebral Palsy looks like.  What do they look like? If it weren't for medical devices would anyone be able to tell?  You simply cannot judge a book by its cover.  I took this search to my Mild Cerebral Palsy Support Group and asked them to share pictures and a little background on their kiddos.  I was blown away by the amazing responses and just how different everyone's situations are.  We have so much to learn from each other in this life.  My hope is to bring awareness to the Mild CP community. Did you know that Cerebral Palsy is the most common motor disability in children? It affects approximately 3 live births out of every 1,000 in the United States. 

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way).
First, meet sweet Ava! She's 7 years old. Diagnosed at 4.5 years old with spastic Hemiplegia. Ava is twin 'B' born at 38 weeks. Ava was always developmentally behind and her mother suspected something but the Pediatrician would brush it off.   At age 4 she was still having frequent falls and still struggling with speech and social development. They were referred to PMR Doctor who confirmed Ava's diagnosis by MRI.  Her Mama writes, "I'm so proud of her. She wants to do well and works so hard in school. Areas that are affected are behavior (ADHD), balance, stability, and endurance, learning and speech . She has been serial Casted and wears AFOs. She is in mainstream school but is pulled out twice a day by her special Ed teacher. She gets therapy in school PT, OT, and speech as well as privately after school 2-3 times a week. She is my hero and my Life!"


Meet Stevie, she's a 2 (soon to be 3) year old ball of sass! She was born at 30 weeks after her mom spent 2 weeks on hospital bed rest because her water started leaking at 28 weeks. Weighing 3 pounds 11 oz, she spent 5 weeks in NICU until she reached a healthy 5 pounds.  Stevie was not reaching certain milestones and the pediatrician would not officially diagnose her until 1 year. She was referred to a neurologist and was diagnosed with Mild Cerebral Palsy at 13 months old. At 14 months they started Early Intervention with Regional Center. Mom writes, "This was the best decision we had ever made. I truly believe Stevie is where she is today because of this program. A month into therapy Stevie was rolling over. Although she never crawled, she would scoot. She received Physical Therapy, Occupational Therapy and Speech. Stevie started walking unassisted a few days before her 2nd Birthday. Now that Stevie will be 3 next month we are transitioning out of the Early Start Program and into our local School District. Because of therapy, Stevie is so much more confident even though she has always been strong-willed. Stevie may have CP but this does not define her and definitely does not hold her back." 


Meet this Mommy's little "Monster" who is almost 3 1/2 years old. This little guy was born 10 days early.  At 20 months old he was sent for an MRI, he wasn't walking and could only communicate through sign.  By 25 Months old he was walking in SMO's (Foot Braces).  He is now trying to run! His mom writes, 'we were originally told to expect him to rely on a walker or device to walk and that he'll only use sign language. Well he proves them wrong Daily. He is my hero and I am so proud. He is now using 4 word sentences and goes to pre-k."


Meet this Mommy's Perfect Son, who is 6 years old. He was diagnosed at 6 months old and that's when he started wearing his glasses. He began to sit-up, roll, and crawl by the age of 2.  He started walking, eating food, and talking at age 5.  His Mommy writes, "I am very blessed that my [oldest] son is now doing a lot of things on his own."


Meet sweet Callie who is 2.5 years old. Born at 36 weeks, due to preeclampsia issues with mom and was diagnosed with Mild CP at 14 months. She's worn glasses since 6 months old and walked independently around 18 months. She currently wears AFOs for toe walking. Mom writes, "Callie loves people with all her heart, she can light up a room with her smile. Raising a child with Mild CP may look difficult to others, but to us it's our normal."


Meet Mason. 32 week preemie, twin 'A'. No issues in NICU except growing & learning to feed. At 4 months old he started private PT for torticollis (Right side, which we now believe was CP). At 8 months old, he still could not roll over and had very high muscle tone. Also kept Right hand in a fist much of the time. He was Diagnosed at 10 Months Old. He is about to turn 1 and can scoot on his butt, pull to stand, and is starting to babble more. Mom writes, "He has trouble feeding himself with his Right hand and is still very "tight" but most people would never notice anything different about him."


 
Meet, Naomi.  She is 2 1/2 years old.  She suffered a brain-bleed at birth.  She was diagnosed at 4 months old with mild left hemiparesis. She didn't crawl, but could "creep" or scoot around. At 14 months walked assisted with ankle braces "AFO's". She wore AFO and SMO braces until 28 months old and is now doing fairly well without them. She runs, walks, and climbs to keep up with her two brothers. Lots of bumps and bruises, lots of falls. Her coordination is affected by her CP, and so is her endurance. Mom writes, "Luckily daddy doesn't mind carrying her when she gets tired of keeping up with her siblings. Speech has been affected by her CP, and she works hard to make her wants and needs known."

   
 Meet 3 year old, William. He wasn't using his left hand as much but met his milestones. We ended up getting a diagnosis of mild cp at 18 months old. Confirmed by MRI that he had a perinatal stroke. It effects his whole left side, but that doesn't seem to hold him back!


This is Benjamin! He was born at 39 weeks and weighed 7 lbs. 4oz.. He had a MRI done at 20 months because he kept his left hand in a fist almost all of the time and his left leg didn't act the same as his right. We suspected something was up much earlier, but got some pushback from his pediatrician. He sat up at 6 months, crawled at 9 months, and walked at 16 months. He is only affected on this left side (arm and leg) and has no other delays. He is 4 now and super smart and funny. 
smile emoticon


Sweet Noa was born 10 weeks premature, weighing 3lbs 4oz due to placental abruption. She stayed six weeks in the NICU and was intubated for the first two days. She was treated for a heart murmur and was a "feeder/grower" for the majority of the time. She had a few "spells" and was kept on caffeine for 5 weeks. At 1 year old, she still couldn't sit independently. Our doctor reassured us repeatedly that she was just behind. I pushed to get into a neurologist where she was quickly diagnosed with spastic diplegia. She has worn glasses since 11 months and AFOs since 15 months. She is 2 now and starting to crawl. She is incredibly ambitious and so funny. Cognitively she is fully capable and verbal. Her fine motor skills are beginning to catch up to her age. Mama writes, "Her resilience is jaw dropping and I admire her greatly. She is being fitted for a walker soon. Most days she wakes up and yells, "Shoes! I walk!" We look forward to seeing what she will surprise us with next."


This is Josiah! He is a 29 weeker, who along with his twin had a traumatic birth. He had a grade 3 brain bleed that eventually resolved but left some scarring. He was diagnosed with Mild Atypical Hypotonic Cerebral Palsy at 20mos old. He struggled with head control, didn't sit up until 12mos and couldn't bear weight on his legs until he had AFOs at 11 months old.  He took independent steps around the 16 month mark, and now at 28mos he wears AFOs to help with his pronation, foot drop, stability and endurance. He also has a weak core so he cannot sit up straight for too long. Mama writes, "he's happy and can keep up with his twin brother for short bouts and then he takes a break and is at it again! He's my heart!"


Meet Aiden. He was born at 35 weeks and had a brain bleed that was found during a routine head ultrasound. A follow up ultrasound 5 weeks later found more fluid in his brain. His neurologist ordered an MRI, due to favoring a hand, spasticity in his hips, legs, and ankles, and low muscle tone in his core muscles.  At 6 months old his MRI confirmed a stroke at birth. The stroke left holes in the white matter of his brain and created PVL. Through hard work and lots of therapy Aiden walks. He still falls a lot and has coordination problems.  Aiden is non-verbal and has been diagnosed with mixed expressive/receptive speech disorder, as well as, a language delay. He also has serious feeding issues. He wears bi-lateral AFOs to control toe-walking and sees pt/ot and speech therapists weekly.


This is Laney.  She's just about to turn 4 years old. She has mild right hemiplegic cp. She's affected almost entirely in her right leg. She's not as fast as her peers and tires more easily, but other than that she's not much different from other kids. She's a twin and was born full term with an uneventful delivery. We didn't have a diagnosis for her until just before her 3rd birthday. My concerns about her gross motor issues were largely ignored. It took a lot of follow up on my part to get her diagnosed. Her neurologist believes that the stroke which caused her hemiplegia, happened during the first trimester of pregnancy. I suspect it had something to do with the fact that she had a single umbilical artery.

Meet Rowan.  He was born on his due date at home as planned, but lifeless at birth. After a week of seizures, sepsis and organ failure in NICU with moderate hypoxic brain injury, he was diagnosed with CP. Now, at almost 2 years old he walks independently and can nearly run, even jump!  He struggles with coordination and speed.  He also struggles with gross and fine motor skills.  He has no cognitive delays and says many words together. Unofficial diagnosis is "right-sided hemiplegic CP, level 1 on GMFCS scale."


This is Madilynn. She is 18 months old.  She was born full term, with many complications. True knit, chd, meconium aspiration, collapsed lung, hypoxic, hppn. She had her heart repaired at 19 days old and got MRSA. The MRSA went sepctic, which requires another OR visit for broviac line. She stayed in the NICU for 6 long weeks, and feeding continued to be an issue. She has no tube, but still has major feeding and swallowing.  She also has speech problems. First neurologist diagnosed her with dyspraxia. She is hypotonic, right sided weakness, early hand preferance. She did have an MRI at 2.5 weeks old which was clear. She has a swallow study this month and a second opinion by another neurologist.


Lastly,


Meet my Fin.  She was born 9 weeks premature, which resulted in Brain Bleeds.  It was a long journey to get her official diagnosis, at 15 months old, because her Pediatrician and Neurosurgeon brushed it off.  She was delayed on her Milsetones, but one by one she continues to achieve them all!  She has ZERO intellectual disability, so she can understand when someone treats her differently.  She loves her Dance class and even rides horses as part of her therapy.  Walking Independently is our next big hurdle, and every day she is - literally - one step closer.  She motivates us to work hard for what we want, and to never give up hope when the "going gets tough".  Her sweet spirit is simply the best & she rocks our world in the best way!
    


FOR MORE INFORMATION ON MILD CP PLEASE CLICK HERE

IF YOU WOULD LIKE TO DONATE TO HELP KIDS WITH CP PLEASE CLICK HERE



76 comments:

  1. Oh my heart is just bursting with joy at the sight of all these sweet babes! My Benson is 4 and had a perinatal stroke diagnosed at 25 days old while in the NICU because he just couldn't get the hang of suck-swallow feeding. He didn't walk until 2.5 but now he runs everywhere ALL the time and this morning he tried to JUMP into his pants. He has very limited use of his left hand but we had great success with the constraint-induced therapy program at Childrens of Alabama and are going again this summer. He is so smart and loves preschool, sports, and reading books. He does have some sensory processing issues and we're excited to see the developmental pediatrician soon and get some ideas to help him with that!

    Thank you so much for posting this and sharing all these amazing kiddos!

    ReplyDelete
  2. I stumbled upon this blog by way of Just Like Mommy Cosmetics. I too am a Mommy of a little boy with mild cerebral palsy. I'm curious if your Mild CP support group is online? I currently live hours away from all my family and don't know may people in our area, I would LOVE to be able to connect to other parents dealing with the same things I am. Ezra, my son, suffered a stroke in utero, and was diagnosed with having a large vessel stroke affecting his left middle cerebral artery at 9 months old. We've been doing OT since 6 months old, PT since 12 months and speech since 3 years old. These babies are amazing, and so are their parents, my son teaches me so much every day, and I am always amazed at his progress!

    ReplyDelete
    Replies
    1. Me too! I want to know more about the group. I have a child with Mild CP and found myself nodding my head as I read through the above descriptions.

      Delete
    2. I would love to learn more about this group... I can relate to so much in your response! (fit4gillies@gmail.com)

      Delete
  3. This comment has been removed by the author.

    ReplyDelete
  4. I found this blog through a shared post on Facebook. It's great hearing about other children who are like my Oliver. He's 10 months old and was diagnosed about a month ago with CP. We're still not able to tell how affected he's going to be, but the neurologist says he's fine cognitively which is a relief. From the MRI we're told he's about halfway between best case scenario and worst case, but slightly leaning towards the mild side. I guess only time will tell, but he's a fighter.

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  5. I came upon your blog from an article on Yahoo. I too have Mild CP. I just want to applaud you as a very supporting mother and a supporting advocate.

    ReplyDelete
  6. I saw your blog in yahoo news,Im a Labor and Delivery Nurse,you have a beautiful and courageous little girl,don't let the ignorance of people get to you,keep fighting,with love Gladys

    ReplyDelete
  7. I saw your blog in yahoo news,Im a Labor and Delivery Nurse,you have a beautiful and courageous little girl,don't let the ignorance of people get to you,keep fighting,with love Gladys

    ReplyDelete
  8. I would love to learn more about the support group, if possible. Fit4Gillies@gmail.com

    ReplyDelete
  9. Whatever your disability is, cerebral palsy and/or other disabilities, it doesn't mean you can keep on looking on the dark side. As long as there is life, there is a way. Thank you for sharing this article.

    ReplyDelete
  10. I would also like to know more about the support group. My son is 4 and was recently diagnosed with mild cp + hemiplegia. Erikapaul08@yahoo.com or angelsfan82@gmail.com

    We are praying for a speedy recovery for your beautiful girl.

    ReplyDelete
  11. Hey, very nice site. I came across this on Google, and I am stoked that I did. I will definitely be coming back here more often. Wish I could add to the conversation and bring a bit more to the table, but am just taking in as much info as I can at the moment. Thanks for sharing.
    Cerebral Palsy in Children

    Keep Posting:)

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    October 23. A potential Game 7 is scheduled to be played on October 31.[2] The Series will be televised nationally by Fox. For the second year in a row,
    the World Series will be sponsored by YouTube TV https://worldserieshints.com/ and officially will be known as the 2018 World Series presented by YouTube TV.[3]

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  34. Breeders Cup 2018 Live Stream switch The $500,000 Claiborne Breeders' Futurity offers an essential prep for the Sentient Jet Juvenile and it's nothing unexpected the 1/16-mile test has drawn a full field of 14, with Red Oak Stable and Madaket Stable's Mind Control figuring to be a noteworthy player. Prepared by Greg Sacco, Mind Control was the disturbed champ in the Saratoga's seven-furlong Hopeful Stakes on Sept. 3. The child of Stay Thirsty is 2-for-3 lifetime and has enhanced as the separations have expanded, proposing he will be up to what is his stiffest test to date. Mentor Chad Brown will send in a couple of great New York make a big appearance champs in Looking at Bikinis and Standard Deviation, while Sombeyay is likewise expected in for coach Todd Pletcher.

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  35. The time delay implied some online Melbourne Cup 2018 Live Stream watchers had the activity ruined when they caught neighbors commending objectives they had not yet observed on their feed.

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  36. Watch CFL season 2018 Live Everyone anticipates that me will state Calgary, so I am going another course and saying Winnipeg. Disregard the last week misfortune which made no difference for the Blue Bombers and spotlight on their noteworthy five-diversion winning streak before Week 21. No group scored a greater number of focuses than Winnipeg and just the Stampeders permitted less.
    In the event that they can survive the Regina encounter they can beat anybody.

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