My Botox Baby
Categories: Newborns, Babies, Toddlers, Pregnancy & Birth, Medical Conditions, Development, Special Needs, Amazing Parents
My son, post Botox. Photo by Julie Z. Rosenberg
I watched through spread fingers as one doctor, one nurse and both my parents held down my two-year-old son on an examining table. Clad in just a diaper, Jack was on his back with his legs spread. The doctor was tapping the syringe in her palm while the nurse ran an electronic stylus up and down his left thigh. She was looking for veins that the doctor needed to avoid when injecting the Botox.
I couldn't cover my ears to muffle his screams because my hands were already covering my eyes. But the Botox was necessary. I wanted him to be able to walk and this seemed like his best chance. For the past year, I'd been in a living hell, going from doctors' offices to therapists to hospitals on a quest to find out what was wrong with my boy.
It all started at his one-year well visit, when his pediatrician asked me all the standard questions:
Is he holding the bottle by himself? No.
Is he walking yet? No.
Cruising? No.
Crawling? No.
Rather than locomote on his own, Jack spent most of his time in an exersaucer grabbing at toys within easy reach. At the park, other kids ran around while my son sat watching them.
I felt like I'd been sucker punched. I'd always prided myself on not buying into the my-baby-can-do-this, one-upsmomship game. Up until his one-year well visit, everything had been great. Sure the bottle-holding battles and his inability to ambulate around the house gave me pause, but when I read up on developmental stages, they didn't seem to be out of the realm of normal.
All new moms deal with their kids' quirks, don't they?
The doctor suggested that we have Jack evaluated by therapists at early intervention. My immediate thought was, "Early intervention? Isn't that for drug addicts, alcoholics and gamblers?" But before I had the chance to say as much, she went on to explain that she was concerned he wasn't hitting his milestones.
My husband Tom and I left the office in a mutual haze, and decided that the doctor was being an alarmist. I put off calling the early-intervention specialists for another month. Jack, I figured, was just slower to hit milestones because he was born three weeks premature. And besides, it was his personality to do things on his own schedule. According to my mother-in-law, if he were anything like his father, he'd be hitting milestones when he was good and ready.
Stubborn and self-directed, she said.
Independent and laid-back, we thought. We were impressed with our son. What a cool dude he was.
But, deep down, something was nagging at me.
When I finally called EI, I had an appointment with an intake coordinator and three therapists all on the same day. They observed him en masse on a play mat at their facility, interacting with him at various intervals, offering him toys and books.
The speech therapist remarked that his language abilities were age-appropriate. The physical and occupational therapists, however, recommended that he receive some therapy, explaining that he was exhibiting low-muscle tone on his entire left side, which was the reason he was unable to crawl, pull himself up or hold his bottle.
Of course, in hindsight, I started to pick up on clues. Whenever I'd place an object to his left, he'd reach across his body with his right hand to grab it. I never thought much of it at the time other than that he was probably not going to be a lefty like his father.
They told me he was at least 30 percent delayed in both his fine- and gross-motor skills, which qualified him for state-funded, early-intervention therapies. The physical therapist then recommended I make an appointment with a pediatric neurologist.
"Why?" I asked, a little surprised. "Why would he need to see a neurologist?"
"Well, there's a chance he had a stroke," the PT said.
"What? What are you talking about? When could he have had a stroke?"
"I really don't know," she responded. "I just think it's a good idea to meet with a neurologist to rule anything out."
Our meeting with the pediatric neurologist was far from definitive. After examining Jack for 10 minutes, the doctor said that she believed he probably did have a stroke. She didn't have an answer for us on when and how this could have happened, but she wrote a prescription for an MRI.
Because he was so young, they put him under general anesthesia in order to perform the MRI, which took about an hour. I had a full 60 minutes to rehash the past 14 months, like how I'd joked to my friends that when Jack attempted to crawl he looked like a slug. I'd even get down on my belly on the floor (at work, in their living rooms) and show them. His right arm would be stretched out in front of him and he'd drag the rest of his body behind him. His left arm would be tucked close to his side, really just along for the ride. He looked like one of those man-crawling-through-desert-in-search-of-water cartoons. I thought it was kind of cute.
Making fun. That's how I deal with trauma and pain. I make light of it. It's a coping mechanism that has always worked for me. But underneath all the humor was now a lot of pain. And even more guilt.
A week later the neurologist shared the results with us. The scans confirmed her suspicion. Jack had indeed suffered a stroke that left permanent damage to his brain.
Again, I asked, "When?"
"It's what we call an in-utero stroke. It happened while you were pregnant. The best we can do is pinpoint it to some time during your third trimester or during delivery."
I was stunned. How the hell did this happen? All this time he's had this brain injury and neither of us knew. An unending litany of questions began to fill my head. "How could we not have known? How did we not notice? What caused it? Was it when I passed out in the subway? Nope, that was during my first trimester. Was it when I fell down that steep flight of stairs in the pouring rain? No, that was during my second trimester. Was it because I don't eat red meat?"
I bombarded the doctor with every plausible reason I could think of.
"Julie," she said. "We don't know what caused it. It certainly wasn't anything you did or didn't do. This is one of those medical mysteries that we don't have an answer for. It was a fluke accident and you need to continue the therapy you've started and work with him as much as you can. His brain is very plastic. His neural pathways are constantly realigning themselves. There's lots of good work you can do right now."
Turns out, even though my husband nor I, nor any of our friends or family, had ever heard of an in-utero stroke, they're not so uncommon. They've actually been documented as one in every 4,000 full-term births. Not so much a fluke, in my opinion.
What I couldn't get past was the fact that we were completely oblivious to his injury for more than a year, or more precisely, his entire life.
Early on in our nascent parenthood, my husband and I made a conscious decision to let one parent lose his or her mind at any given time. But when this happens, the other parent must assume the role of calm, even-keeled caregiver, regardless of his or her real emotion. We found that it mostly worked like a charm. We were respectful of each other's space and didn't try to usurp one another or encroach on the other's moment of un-zen-like behavior.
That is, until the morning we found out our son had suffered permanent brain damage, with lesions on his right, front and parietal lobes that will never go away. On that day, we both lost it.
The stroke he had was called an infarct. It occurred in the right frontal lobe, which essentially affects his motor skills on his left side. The neurologist told us he's also at risk for epilepsy.
"How 'at risk'?" I asked.
"There's a 50/50 chance he'll be diagnosed with epilepsy in his lifetime," she said.
In other words, we have no idea.
We went home that night in a state of disbelief and shock. In an effort to make the best of it, I started Googling famous people with epilepsy and names from Fyodor Dostoyevsky to the Beastie Boys' Adam Horovitz popped up. I thought it would make me feel better but it only made me feel worse. I started to cry and continued to weep for a long while. My husband took me in his arms and we cried together. We had no idea about our son's future, let alone his present.
The early-intervention program turned out to be our saving grace. His official diagnosis was hemiplegia, which is a mild form of cerebral palsy, and includes paralysis on one side of the body. Within a few months he was able to hold objects with his left hand and eventually move in a way that resembled a crawl. The mechanics of walking, however, seemed elusive.
Heidi, Jack's physical therapist, is one of those people who goes above and beyond and then beyond that even more. She was so invested in his success that she called us up at night and on weekends to discuss new ideas and therapies. Full of creativity, insight and compassion, she kept me sane and hopeful throughout this ordeal.
One day, she said she'd been talking to another therapist who was having some success with this wearable equipment called TheraTogs. She wanted to try it on Jack. It was essentially pieces of felt that would wrap tightly around his waist, pelvis and left thigh to help stabilize his muscles. In the beginning, like everything we did with him, he resisted, and this get-up was no exception. And it really was a get-up. Whenever it was on, I couldn't help but think he looked just like a Jedi Knight.
A few months after his diagnosis, my parents babysat Jack for an entire weekend. When we returned my dad asked if we ever noticed that Jack's left leg was shorter than his right.
"No," I said. "Never. Show me."
So he lay Jack down on the sofa and pulled his two legs down straight in front of him and gripped them at his ankles.
"See," he said.
"No. I don't see," I said.
Tom looked and said, "Yeah, you're right. I do see that. "
"Maybe you should go see a pediatric orthopedist," my father offered.
All I could think was, "Here we go again. Another missed observation by Mom and Dad." Once again, the guilt settled in.
So the next day I made an appointment with a pediatric orthopedist, who performed the exact same test with Jack's legs that my father did and said, "Yes, the right one's a fraction longer. But that's not what's inhibiting his ability to walk. He has hip dysplasia."
She explained that his left hip socket was turned out about 20 degrees and that he probably wouldn't be able to walk until that was corrected.
"Was he born with this?," I asked.
"Most likely it's a result of him overcompensating for his left leg with his right one. This has caused his left hip to splay out in the opposite direction. We just need to correct that," she explained. "There are two options: The first is to snip the tendon in his adductor, the inner thigh muscle. That would put him in a half-body cast for three weeks."
I grimaced.
"The second option is to give him Botox."
"You're kidding," I said.
"Dead serious," she replied.
What mother in her right mind would let a doctor stick a botulism-filled syringe into her child's sweet, fleshy thigh?
She explained that his adductor has continual spasms, which was impeding his ability to walk. The Botox would temporarily stop the spasms and enable his physical therapist to get in there and do intense stretching, which in turn would help return his hip to its normal position.
That night I decided to do my own research. Turns out that Botox is a common treatment for people with cerebral palsy, and it has helped many people get past the muscle spasms and allow their bodies to function better. Even more surprising, Botox was invented to help people with crossed eyes and uncontrollable blinking. When doctors noticed the lines around these patients' eyes were softening and even fading, a booming cosmetic industry was born.
Still, it made me nervous, but if it is was going to help my son learn to walk, then I needed to get over it. My friends didn't believe me when I told them my son was getting Botox. A cheeky coworker asked me to save any extra for her. In my compensatory way, I joked he'd go in a two-year-old and come out a one-year old.
My husband is analytical by nature and was much quicker to consent to the treatment than I was. We both agreed that nothing in our lives had prepared us for this and that parenting is like a series of curveballs thrown to make sure you're paying attention.
And yet another was on the way.
We were warned of the perils of trying to get our health insurance to pay for Botox. The doctor would write us a prescription and we would have to go to the pharmacy, pick it up ourselves and bring it back to the office.
Standing at the counter of my local drug store, the Botox-bearing pharmacist said, "That comes to $780."
"That's the co-pay?," I asked incredulously.
"No," she said. "That's the full amount. Your health company is denying coverage."
"Hold on," I said and stepped away from the line. I pulled out my cellphone and called Tom, knowing full well that he would take care of it. He's a bulldog when he needs to be, one of the more charming things I learned during our courtship.
Tom called back five minutes later and said, "Go try again. It should work now." Of course, Botox is not covered for wrinkle removal, but my husband set the record straight with the insurance company, firmly explaining my son's need.
"Let me get your name so when I write my complaint letter that you denied treatment to a little boy who had a stroke, we have all our facts straight," he said.
Five minutes later, we had our Botox, for the grand total co-pay of $70.
Weeks into the treatment, we saw gradual improvement, but nothing earth shattering. Then one night, my son's babysitter told my husband and I that she wanted to show us something, quickly adding, "Oh, and get your camera."
She put Jack's favorite toy on the chair across the room. Then, she stood him up on his feet and pointed to the toy. It worked like catnip. He took off like a bat out of hell. Not the most graceful perambulation, but it was all his. Every. Awkward. Step.
We clapped and hooted and shouted with a joy that could not be matched. Then we called my parents and put the phone on speaker. They heard us celebrating, but wanted to see for themselves.
We uploaded to YouTube within minutes so family and friends could share in this big moment.
In addition to the Botox injection, Jack's orthopedist also prescribed an immobilizing brace for nighttime, a kind of outsize molded-plastic wishbone that splayed his legs so wide I feared he would split in half.
Anticipating his distaste, Tom and I cobbled together a mini brace comprised of duct tape and a milk jug for Jack's mini Elmo. That night we showed him Elmo's new "toy."
"It's only for nighttime, when he's sleeping," I said.
"Here, let's put it on him," Tom said.
A huge smile spread across Jack's face as he took the odd plastic object and wrapped it around Elmo. He was very pleased with himself. Then we told him it was his turn. That's when he started to cry. Big, loud, hiccoughing tears.
Eventually we wrestled him into the contraption and put him to bed, with him crying all the way. I did, too. It really tore at my insides to see him like that but I knew he needed to wear it: To walk, to run, to skip and jump, like the other kids.
A few days later Tom came home with an Elmo as big as Jack. That night we put Jack's brace on Elmo; Jack pulled it off. Then he lay the brace on the bed and climbed into it. We knew he was set to be strapped in when he popped his thumb into his mouth and lay still.
Four months from the date of his first Botox injection we had a follow-up appointment with his orthopedist. She was so pleased with his response that she informed us Jack didn't need more Botox and that he could stop wearing the brace.
That was three years ago and today Jack is a happy, active five-year-old who runs around the playground with other kids his age. He holds his own in the sandbox and climbs up and down stairs like a champ.
But in quieter moments, I feel like I'm waiting for the next curveball to whack me upside the head. Because of his stroke, there are many unknowns that will only present themselves to us as Jack goes along living his life, the same way we found out about his stroke in the first place.
I think about what we've all been through, and how I was freaked out about the idea of Botox for a baby. Now, I can't deny the reality. Botox has given me a permanent smile.
Related: Botox for stroke survivors
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Reader Comments (Page 1 of 5)
Michelle 1-29-2010 @ 4:26PM
I was so moved by your story. I can't tell you how wonderful it is when a child surpasses what the experts say his limitations will be.
Our son, Avi, was born almost 8 weeks early. He weighed 3lb 15oz and had to stay in the NICU for 3 weeks before he came home. He was my third, the older two being 9 and 13 at the time. I also stayed home with him, not the older ones, so it never occurred to me that he had "developmental delays." I was enjoying watching all the little changes and figured he would sit up in his own time. At his 9 month checkup they told me to call Early Intervention (just like your story) and I was shocked. They diagnosed him with mild Cerebral Palsy and sent us to a neurologist, who recommended an MRI (like you!).
We chose not to do the MRI because they said the treatment would be the same no matter what the results showed, and they might show nothing. He probably had some sort of trauma at delivery or right after - probably has a lesion on his brain somewhere, but my husband said that knowing whether he did or not wouldn't change anything, so we opted to put it off and go with therapy. He had physical therapy every week, eventually occupational therapy and behavioral. They said he would probably walk by the time he was in kindergarten but it might be with braces.
We were building an addition on our house at the time, so we added a bedroom and bathroom to the first floor to accommodate the diagnosis.
I was sort of numb from it all. My older kids with their pre-teen attitudes were nothing compared to the idea of my son in braces and adding a ramp to the front yard.
Then he sat. the therapy made a huge difference and realizing I had to show him how to do the things most kids just inately know how to do was key. He rolled and crawled and he stood and he cruised and he walked ... all by about 15 months! He has high muscle tone, but the physical therapist says he may outgrow the CP diagnosis. He still toe walks and when he gets excited his arms can flail a little. He gets very tight when he is upset and his running is rather hoppy. But he runs and he climbs and he jumps, he's just a little spastic, but we count our blessings.
He's 3 1/2 now and we have another son who is 9 months old. The younger one sits up and is learning to crawl. He currently rolls and creeps and can get anywhere he wants, though it often resembles a sailboat tacking along a breeze. We look at him and realize the little things that Avi did not do - all the body movement and activity that was missing with our older son, but we hadn't noticed. Now we notice everything and Micah (the baby) is fine.
We had Avi re-evaluated when he turned 3 because he would have had to change services from Early Intervention to the Intermediary unit. He passed with flying colors - academically he was fine. He's a smart kid - extremely verbal (he never shuts up) but he still looks funny when he runs - he probably won't be on the track team.
I wonder about the botox. Would that help him loosen up? Would it make his arms and legs less tight so he could catch a ball and play with his brother without accidentally winging a toy at the baby's head - he has some movement control issues.
People who don't know he has CP don't notice any of this. As he gets older and more active and attends school, his friends will probably notice, and we worry how he will feel when he's picked last on the baseball team. We worry about self-image and all that. We have the same concerns about what might lie ahead, but so far so good. I guess you never know, regardless of the why and what of it - with kids, you never know. I do know that all four are as different as they can be, and that's good. But we'll always worry about them anyway.
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holly 1-30-2010 @ 10:28PM
Thank you so much for sharing your story. It was so encouraging to me. My little girl was born 9 1/2 weeks early and weighed just 1 lb 13 oz at birth. She was 8 in tall. we are still in the process of running tests and nobody knows for sure what problems will manifest. The future often looks so uncertain and scary. It did me good to read your story and my encouragement is that one day, I too will be able to look back and say that we overcame.
terry 1-30-2010 @ 10:41PM
You are right that it's 1 more curve ball, our daughter who is now 37 was born with congenital hips,didn't crawl ever,didn't stand until she was 4 but then was diagnosed w/chronic renal failure,had less than 10% of a kidney and a deformed bladder. Had 47 minor surgeries before she was 2,then on July friday the 13th went for a ureter re-implantation,cardiac arrested 4 times, optic nerve damage all from an electrolyte imbalance that was not checked at a major childrens hospital prior to this surgery. We never sued because I felt the urologist took responsibility for this and apologized but the only hope they gave us was extremely retarted or even a vegtable. 8days later she awake"I WANT A DRINK OF WATER" but she was completely blind. her vision returned slowly and she has continued to work beyond their expectations but she is far behind in many aspects. She has/does have a productive life and I will always be greatful to the people who have touched her life that have made her feel equal/extrordinary (Billy Corrigan,"Smashing Pumpkins",Tony Orlando, Captain n' Tanneil, and her younger big brother and his wife) You see she is only 4'7" and her little brother is 6'3", but she taught him great compassion and he married a wonderful girl 8 years ago who loves my daughter and has encouraged her in every aspect. 1st she was a brides-maid, four years later an assistant coach for the birth of my granddaughter which made my daughter so proud. We've done well in raising 2 fine children and we do not dwell on the pain or the fear that we went through although when my daughter was in her early 20's she once said, "you probably should have let me go when I was a baby, I'm not sure anyone should have the memories I have!" That's when I set out to go above and beyond to help her establish memories that would replace those thoughts. She really liked music so I took her to every concert I could possible affort (we are not well to do) and I worked my way to the front and her small, cute appearance got their attention and a memory was made. Now as I'm getting older those memories are golden!!!
MarVeena 1-30-2010 @ 11:15PM
Thank you for sharing your familys journey!
Hang in there,
Sara 1-31-2010 @ 7:10PM
Hi Michelle,
My 7 year old son has mild CP (left hemiplegia) and has been undergoing the botox procedures every 8 months or so for the past few years. It has helped tremendously. I'd highly recommend that you talk to your son's pediatrician about it. They may be able to refer you to a specialist who could evaluate him to see if he would be a good candidate. Since the botox basically helps minimize muscle spasticity, it seems like it might help! God bless & I wish your little guy all the best.
-Sara
Eddie D 1-29-2010 @ 9:16PM
Awesome story. He looks like a great kid. Aside from that Yankies cap. lol
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MB 1-30-2010 @ 8:18PM
I too have a son who had a stroke at 5 days old. His was a grade 2 which left ALOT of damage to the left side of his brain. His right side has never been as strong. He learned to walk after intensive physical and occupational therapy at 23 months, right after his twin brother who did not have stroke. He has struggled throughout his life with learning disabilities and the marked right-side weakness that came with the stroke. He is now 16 years old and walks absolutely perfectly without any braces, just an orthotic insole that slips into his shoe. He is on the honor roll at his AP high school and plays basketball with all of his heart. He still has trouble with his eyesight because the right eye is so much weaker than the left. We have to change his glasses prescription just about yearly. But gosh, what a small price to pay for a healthy, loving, great kid!! I feel that as bad as the diagnosis can be for the parent, you can bet you will NEVER take your child or their health for granted as so many other parents do.
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teri 1-31-2010 @ 10:22PM
It's was great to hear your story. My son also has mild CP (right hemaparesis) . He is now 17 and plans to attend college next year and study accounting. To the untrained eye he looks "normal" , but he struggled socially in middle school high school because "he" knows he is different. good luck to you and your family.
Michelle 1-30-2010 @ 8:31PM
What a great thing to see. I wish you continued joy and success. Remember always that Jack has the world at his fingertips, and anything is possible. I speak from experience. I am a 20 year old with cerebral palsy, currently in school to be a special education teacher. Feel free to email me if you would like, michelle@abilityawareness.net.
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larry 1-30-2010 @ 9:46PM
You should have your son tested for anti-phospholipid syndrome. This is a rare auto-immune disease that causes blood clots. I got it at the age of 51. NO reason. My research told me that this occasionally occurs in pregnant woman who then loses the baby
Chances are, if he has it, there will be more strokes. Good luck!!!
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missy 228 1-30-2010 @ 8:48PM
Wow you just gave me hope for my son he was born with totocolis it's when the neck leans to one side his pt has been working nonstop to try to get his head stright by slowly streching his neck mussels since he was 4 mths with no improvement so she said it is time for botox injections i thought she was jokeing but she said children get it for cp and for other treatments that have helped them soo much. since she said it's whats best for bryson i agreed to do the treatment but iv been crying because it kills me inside that my 3 1/2 has to go thu all of this but reading your story gave me hope and made me stronger my son was never sopose to walk,sit,stand or crawl but he found ways to do it he is my trooper thank you soo much for shareing your story everyone who has written comments to you have also helped me i am sending you and your family prayers
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hnatusko 1-31-2010 @ 5:10PM
Missy my son who is now 12 had severe torticollis...he received PT starting at 5 months of age and then later received 2 botox injections done about 3 months apart and that did not help. Eventually he had surgery to release the muscles. I recommend that since your son is already 3 1/2 you need to seek the professional opinion of a pediatric orthopedist. We were blessed to live so close to Loyola University Medical (Chicago) and am so thankful. The botox injections only made his face lag behind in growth, now he does have one side of his face smaller than the other but the surgery is what saved him.
kimmer 1-30-2010 @ 8:47PM
I too understand what you are going through. My daughter Ashley was also diagnosed with an in-utero stroke. She had many delays through early development and I had a pediatrician that was willing to listen to my concerns (thank you Dr. Malonzo) and follow up with referrals to a higher level of care. A stroke was diagnosed when she was 4-5 months old and we started Botox injections not long after. I can recall as many at 13 injections to her left arm AND left leg, at the same time. Try explaining to a 4 yr old why she has to get 26 shots at one time. At 14 months old, she was diagnosed with Moderate Cerebral Palsy. With the help of my parents, we were immediately very aggressive with physical, occupational and speech therapy. Which if I can give any advise, is the key for your child being successful. We've went through multiple braces, shoes, chairs and most important prayers. I am very proud to say, that I have a 12 yr old daughter, that has very few limitations, is strong in will and desire to push forward with anything she sets out to do. She is one of three of my greatest accomplishments! Be proud!
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George L Blick 1-30-2010 @ 8:48PM
A great story! I wish you and your son continuing success and all the best.
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Cara 1-30-2010 @ 8:52PM
Very touching story. I also have a child that had a stroke in utero. It was diagnosed when he was 4 months old when we noticed he wasn't using his right side of his body, and he also went through the ECI program here in Texas! At the age of 7 he went back to the Shriners Hospital and received Botox injections in his right leg. It's amazing how something that can help a cerebral palsy child wouldn't be covered by insurance.
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lori 1-30-2010 @ 8:57PM
By any chance, do you live in Canada but get Jack's treatment is Birmingham? My son recently met a little boy in a park here in Birmingham named Jack who had a stroke in utero.
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KLP 1-30-2010 @ 8:59PM
I have a 17month old preemie who came home with a referral to E-I. Thank GOODness. He had a "stroke" as well, but it is unclear if it was in-utero or postnatal. Our sweet Sean stayed in the hospital about 12-weeks. I waited 2 months to call E-I and I am glad I didn't wait any longer. The therapists are SO awesome. Sean does not have a CP diagnosis but he does have some smilar symptoms. He is now beginning to crawl and pull-to-stand. It is so great! Your story was very close to my heart. Sean is my first and probably only child. It is so much for me to deal with, since he also is recovering from damaged lungs and gets respiratory infections a lot. You and your husband sound like a great team! May God continue to bless your family.
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OT 2-01-2010 @ 10:56AM
KLP
My child has had a stroke also, and I am a pediatric OT. I just wanted to tell you the meaning of CP. Cerebral Palsy is a collective term for any event that happened to the brain in utero or up to 2 years old. Your child does have CP if they had a stroke.
mesaman 1-30-2010 @ 8:57PM
Give your son a big hug for me tonight. I feel I have known him for those three years. You have written an exceptional story. God bless.
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Fred 1-31-2010 @ 3:14AM
If Jack has any evidences of learning disabilities later on, you might look into "advancedbrain.com"
We have seen some remarkable results with The Listening Program (TLP).
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