Hello Charlie Fans! Charlie has just finished up his spring therapies and is now spending May and June in Utah with his family. Every year the Greenmans travel to Cedar City where Jack (Charlie's Dad) works at the Utah Shakespeare Festival. While away, Charlie will spend time in the local pool doing some aqua therapy, but all other appointments and meetings fade away for a time. Charlie gets to sit back and be a kid for a while!
The big news is that Charlie is in the process of enrolling for preschool! It's hard to believe it, but he'll be three years old in August! In April, Charlie had his first evaluation for Texas' Preschool Programs for Children with Disabilities (PPCD). This meeting was followed by an Admission, Review and Dismissal (ARD) where therapists, teachers and parents annually meet to create an education plan for the student. Charlie will start preschool in the fall where he will follow normal preschool curriculum and also receive speech therapy and some physical therapy. He will also continue his occupational therapies at Our Children's House Baylor outside of school.
Charlie had a neurology appointment in April. His doctor assessed that Charlie has probably been having sub-clinical seizures (undetectable by just looking at him) which are slightly dampening his cognitive function. We will be increasing the dose of his medication to combat these sub-clinical seizures and of course, the doctor will be closely monitoring Charlie as we find the right balance.
Generally, Charlie is doing very well. He is saying "Mama" with frequency and accuracy. He is also learning new signs and responding appropriately to yes / no questions. It is clear that he understands far more than he can speak. His wheel chair continues to be a God-send and helps him stay connected and mobile. He's very social, always making eye contact and engaging with vocal sounds, laughter and hugs.
May is Pediatric Stroke Awareness month. 1 in 2,800 infants will have a stroke before they are one month old, many before they are out of the womb. 1 in 6 will not survive the stroke. Our little survivor will be three in August. He loves to laugh, play games, ask for more food, snuggle, watch Mr. Rogers, ride around in his zippy wheel chair and did we mention, snuggle? Spread the word - kids have strokes too!
Hello Charlie Fans! Just a note to let you know that a Greenman family friend (Betty Reagan) is hosting an Initials Inc. party (hand bags and organizational gear) and 20% of the profits will be donated to Help Charlie Heal. The best part is that you can shop online and help out from where ever you are! If you're interested in "shopping for Charlie" you can check out the merchandise and join the party right now by clicking HERE.
Charlie has had a great month! His long awaited wheelchair arrived and since then, Charlie has been using it everywhere he goes. He traveled to North Carolina for a family visit and used the chair while speeding through airports and sitting in church services. He's using his chair to navigate his way through museums and restaurants and parks and playdates. He hasn't quite figured out how to push it himself, but he's well on his way. Until then, he has lots of volunteers - friends and family - willing to lend a hand.
Charlie has also been doing some constriction therapy as a way to access his weak limbs and fingers. You can see below that his therapist has bound his over-toned fingers and left his weaker pointer and thumb free for that all-important pincer grasp. We'll continue this kind of therapy through the spring.
Meanwhile, Charlie has been enjoying time with his brother Walker. He plays and scoots and spins and is interested in everyone around him. He's also been doing a lot more "talking" lately, throwing in fully formed words here and there. His latest triumph? Asking for "oh - meal" - a favorite and frequent menu item. Go Charlie!
Thank you to everyone who helped to make Charlie's wheel chair happen.
We are so grateful to you. Your support is awe-inspiring!
Charlie had a great holiday at home with his family in Dallas. He's growing very quickly and is already wearing his brother's 3T clothing at only 28 months old. When he's not playing games or requesting "Itsy Bitsy Spider" for the thirtieth time, he can be found rocking forward onto his hands and knees, a feat that some doctors and therapists said Charlie would likely never achieve.
December saw some huge advances in the food consumption department. His ten week STEPS Program ended in late November and Charlie continues to try new solid foods and even chew with his molars. This is a big step for Charlie, who up until this fall was still on a strict diet of pureed foods with no signs of chewing.
Charlie is also starting to make repeated sounds that appear to be words. He is saying Bye Bye, Mama, Dada, and Car with frequency and accuracy. And every once in a while when he is very relaxed, he will pop out a fully formed word like "diaper" or "paper" or even a name, like his uncle "Joel". It's very exciting. And it tells us that he understands far more than he can communicate.
Charlie also had a vision test in early December. His therapists and family members were concerned that his vision may be impaired due to some behavioral cues they've witnessed. Luckily, Charlie passed his vision test with flying colors! The behavioral cues are being attributed to his Cerebral Palsy rather than a vision condition.
Charlie continues to take Trileptal for his Epilepsy condition. It has successfully curbed his seizures and his family only sees little tiny bouts on an infrequent basis. He'll continue to be medicated and observed by his neurologist in 2013.
Finally, the Greenman Family just received word that Charlie's wheel chair has been ordered and is on the way! The bad news is that the seating and mobility company was unable to get the chair to Charlie in the 2012 calendar year. If the chair had come in 2012, the Greenmans would have paid nothing because they had already met their out-of-pocket cap for the year. A 2013 delivery date means that the Greenman's insurance company is immediately requesting Charlie's full 2013 deductible and co-payment for the chair in the amount of $2,329.00. If you are interested in helping the Greenmans with the cost of Charlie's wheel chair, you can donate to Charlie's fund by clicking the button below.
The Greenmans are very excited about the new year and have very high hopes for Charlie's mobility and speech. He is showing amazing progress through his multiple therapies and continues to surprise us with his pluck and perseverance! He continues to meet with his physical, occupational and speech therapists four days a week. The Greenmans also continue to meet with Charlie's service coordinator who helps them navigate government programs, therapies, sign language programs and various healing resources. As always, thank you for your continued support of Charlie and the Greenman Family. You helped to make 2012 a marvelous year for little Charlie!
Charlie is having a big moment of transition this month. His growth has been off the charts, which is wonderful for his overall health, but means he can no longer use a baby stroller to get around. Our team of therapists have therefore decided to order a wheelchair for Charlie. In the meantime, we're borrowing one from Our Children's House at Baylor to give it a whirl before making final decisions about style and brand. We picked up the chair today and right off the bat, Charlie reached out and tried to push the wheel. It was as if he knew exactly what to do. This obviously bodes well for his mobility and future success with the chair.
In other news, Charlie's lingual frenectomy (surgery last month) is healing beautifully and we're already seeing improvement with his speech actions and lateral tongue movement. And this Friday marks our last week in the STEPS feeding therapy program at the Callier Center. We have been very happy with his progress during the course of this program.
And finally, Charlie met last week with his Neurologist who increased the dosage of Trileptal (anti-seizure medication) to accommodate Charlie's rapid weight gain. Our doctor was very pleased with Charlie's progress, especially his advances with sign language, vocal mimicry and level of social engagement. Generally, Charlie is doing very well right now. Thank you so much for all of your well wishing - we so appreciate it.
All my love,
Sarah
Charlie tries his chair for the first time and reaches out to push the wheel.
Charlie reaching with his left (affected side) to touch the wheel!
Brother Walker gives Charlie a spin around the therapy center.
Walker decides to push Charlie out of the room...
...and down the hall...
...and out to the car.
Once home, Walker wheeled Charlie into the back room and read him a story.
It's been another big month for Charlie Fighting Bear. Charlie is in a time of spectacular transition. He continues to attend classes at the S.T.E.P.S. program for feeding therapy. These sessions have proven to be instrumental in pushing Charlie towards a diet of solid foods. Since I last posted, Charlie has learned to chew and clear some crunchy food items and even feeds himself every once in a while. Both of these are enormous mile stones for Charlie!
Additionally, Charlie is becoming more adept at mimicking sounds and vocal intonation. He'll even go so far as to make the first sound of a word: I say "down", Charlie says "duh". Or I say "kick" and Charlie says, "kah". Its a wonderful step in the right direction. We continue to learn sign language and reinforce signs and pictures as part of our communication. As of today, Charlie can make the sign for eat, up, more, bye bye, play, music, milk, swing and daddy. He also understands the words no, bed, water and food. We're really pleased.
Charlie has also developed the unfortunate habit of screaming when trying to communicate. If he's excited, he screams. If he's upset, he screams. If he's frustrated or interested or hungry or needing any kind of attention, he screams. Its an ear piercing shriek that arrests the attention of anyone within a mile radius. This, as you can imagine, makes it very difficult to be in public with him. It also rattles Jack, Walker and me to the bones when at home. We're trying to offer other ways of expressing his feelings, but Charlie is stuck on the screaming. His shriek-fest started in early September and has not abated. So if you drop by for a visit, don't be alarmed by the sounds emanating from behind the door.
Charlie is still adjusting to life with orthotic braces. They are helping him bear weight through his feet and I think they've helped contribute to better over all posture. One thing that has become very clear this month is that Charlie's journey to walking is going to be a very long one. Most of his therapists and doctors are suggesting that if Charlie walks, it will be in tandem with other assistive devices. For instance, he'll probably be able to eventually walk in our home or in a class room, but will need a wheel chair for longer distances and public mobility. So, we are beginning the process of procuring an adapted stroller or child's wheel chair for Charlie. It's clear he'll need one. It's also clear that Jack and I cannot continue to carry him everywhere. Charlie is 27 months old and over 30 pounds. He has driven us to seek weekly chiropractic care - oye!
Thank you to everyone who helped us stock Charlie's therapy closet! Charlie's Aunt Jean sent a new chair and tray. His friend Gail sent an adapted wooden rocking horse. And many of you sent donations for Charlie's sign language video library. We are so grateful to all of you! Thank you so very much!
The photo below was taken two weeks ago - Charlie sat next to his brother on a bench for almost 3 whole minutes. This kind of core strength and central control is astonishing for someone with his particular physical challenges and brain damage. He loved every precarious second of it!
One of the first foods that Charlie fed himself, successfully chewed and swallowed was Cheetos. Here is a video of Charlie feeding himself for the first time EVER!
I also caught this amazing moment on video... Katherine, our service coordinator, introduced a system of making choices where Charlie looks at a photo to communicate his desires. We're starting small with words like eat, drink, bed, hug, read and play. And we're hoping to expand as he comes to understand the meaning of the photos. This video was taken only moments after introducing eat and drink:
Thanks, as always, for staying connected to Charlie through the blog and Facebook.
It is with a grateful heart that I write these words... thank you, thank you, thank you!
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