Jessie Receives Ambassador Award from National Caring Angel Pageant

Jessie was invited to attend the National Caring Angel Pageant where her little friend Emmy was participating in the pageant. This remarkable organization gives 100% of its proceeds to charities including United Cerebral Palsy. The pageant was held at a nursing home in Columbia, SC and was totally precious. Jessie was given the National Caring Angel Ambassador Award and received a beautiful plaque, stole, and crown. I was so impressed with the people who organized the pageant and the families of the children who participated in the pageant. Thank you Andrea and Emmy for including Jessie in this special event!

If you are interested in getting more information about this organization, here is a link to their web page: http://caringangelpageants.com/

Hipp Hipp - Hippotherapy!

Yes - you read it correctly. It is called "hippotherapy" and it does NOT involve riding a hippopotamus, not even if Jessie really wanted one for Christmas!

Hippotherapy is horseback riding for children with motor disabilities, done under the guidance of a physical or occupational therapist. The idea is that the repetitive movement of the horse's walking provides sensory input to improve the rider's trunk strength, loosen leg muscles, and move the hips in the same pattern as walking. Hippotherapy can improve balance, posture, mobility and function, and may also improve cognitive, behavioural, and communication functioning in children with developmental delays.

We have had two 45-minute sessions thus far and Jessie really seems to be enjoying it. She was hesitant at first to get on the horse, but warmed up very quickly during the first session. When the first session was over and the horse stopped walking, she kept asking for "more" and whined a little when she had to get off!

The people at Shining Hope Farms in Mount Holly are absolutely wonderful! They are so friendly, helpful, and nice. When we met Jessie's pony and found out that his name was "Sammy", we knew that we had come to the right place!

Bye Bye Camp, Hello New Attitude!

As our CECO camp experience came to a close, I couldn't help but think that this is not the end of an intensive month of therapy for Jessie, but the beginning of a renewed effort to push Jessie to a higher level of functioning. In order for Jessie to become more independent, we have to treat each moment of every day as an opportunity to help Jessie learn to move her body, care for herself, and understand the world around her.

Toward the end of camp, I spent an entire 5-hour day working as Jessie's assistant and realized just how physically challenging it can be to manipulate these children. I also realized that as hard as it was to help Jessie move around, it will be infinitely harder when she is an adult if she has not learned to get herself into and out of her bed, the car, shower, or toilet. I am determined to do all I can for the next 14 years to help Jessie learn to crawl, walk, and transition so that her life and my life are manageable when she is an adult.

What improvements have we seen in Jessie since completing the camp?

The biggest improvement I have seen has been in her trunk stregnth. Jessie can sit in a criss-cross position now almost indefinitely with a better more upright posture than before. Her posture fluctuates when she is tired or when her legs are stiff, but overall it has definitely improved.

Jessie can hold the quadruped position (on hands and knees) longer and will allow us to manipulate her through crawling. Having a motivating object and using the elbow splints help tremendously. Jessie loves watching Elmo and Barney videos, so I have been using my laptop computer as a motivator to get her to crawl across the room and it works great. We are hoping to get an iPad so that she can play interactive educational games after crawling across the room.

Jessie's walking did not improve as much as we had hoped for a few possible reasons. She began using the ladder/slider instead of the reverse walker at camp. This device is helpful because it makes Jessie stand more upright and bear more weight in her legs. However, it also makes it harder for her to complete her steps because she can not use her arms and hands to help bear her body weight. I also noticed her abductors and hamstrings have been very stiff which causes her legs to scissor more when she takes steps.

After the first two weeks, Jessie seemed to be improving with potty training and had 2 days where she stayed dry and clean almost all day. Unfortunately, that trend did not hold and we were back to 50/50 success with potty training in the end.

At camp, Jessie tried out a Freedom tricycle and really seemed to enjoy it. She began controlling the pedals herself after 10 minutes on the bike. We are going to look into getting one of the tricycles for Jessie to use at home. On the last day of camp, they had a swimming party and a little graduation ceremony. It was inspiring to see the progreess that each of the 25+ kids made this summer at camp.

During the last two weeks of camp, we also had time to enjoy more sites around Orlando including New Smyrna Beach, Blue Springs State Park, St. Augustine, and the Orlando Science Center. After leaving Orlando, we went to Jacksonville and spent time with family including my sister Janet and her son Harrison from England. We then went to Pensacola for 3 days and arrived back home in Fort Mill yesterday.

It has been an exciting and fun summer, but we are all ready to get back home and into our normal routine!

 



Two weeks down, two to go!

On Friday Jessie completed the end of her second week of camp at the Conductive Education Center of Orlando (CECO). Some of the improvements we have seen thus far:

• Potty Training - Jessie stayed dry and clean all day Friday and most of the day Saturday! We started putting underwear under her pull-up and replacing it whenever she wets her pants. This combined with the daily routine of camp seems to be helping. At one point today, Jessie began whining and when I asked her what she wanted, she said "pee-pee"! Unfortunately, we did not make it to the potty in time but I was excited that she used her words to tell me she needed to go potty!
• Trunk Strength - Jessie is pulling herself up to sitting more in her stroller now instead of always lying back. She is getting better at sitting on the floor or on a bench for extended periods of time without falling down.
• Posture - Jessie's sits up taller and holds her shoulders back a little more instead of leaning forward. She is holding her head up more and responds nicely to verbal queues and reminders like "sit up tall" or "hold your head up".
• Standing and Walking - Using the ladder/slider, Jessie stands up a lot straighter and will hold onto the rungs without letting go.  With assistance, she can walk 10 feet or so before she starts fussing or collapsing her body. In the mobi-rover, Jessie will take a few steps independently to get to someone or something she wants.  She has done it a few times in the RMH kitchen to get to other children.
• Crawling - Using elbow splints, Jessie will maintain quadruped position longer and will allow teachers to guide her through crawling in order to get to a toy she wants. On the first day of camp she would not even hold the position without crying and fussing a lot.

Jessie still has a LONG way to go and lots more work to do, but I can definitely see that the intensity of this program is helping her. We are hoping to get a home program that we can continue when we return to Fort Mill.

Video of Jessie walking with assistance: http://www.youtube.com/watch?v=8JTq9p8tjW8 

We have been enjoying the wide variety of things to do in Orlando. Swimming at the YMCA, playing at a local park, the Orlando Science Center, Downtown Disney, Wet 'n Wild, etc... Last Friday, we went bowling with a really sweet family we met here at the Ronald McDonald house. It is starting to feel like a "home away from home" here!

Can cord blood infusion reverse the brain damage associated with CP?

The FDA is now studying the safety and effectiveness of cord blood infusion for the treatment of cerebral palsy in children aged 1 to 12. The cord blood contains a high level of stem cells which can differentiate into a variety of cells including neurons, potentially repairing areas of brain damage. Only children whose parents banked their cord blood at birth are eligible to participate in this trial, which is scheduled for completion in 2013. If this treatment works, maybe they will come up with treatments using stem cells from other sources (for those of us who don't have cord blood for our children).  Here is the link if you are interested in reading more. http://clinicaltrials.gov/ct2/show/NCT01072370

Second week of camp off to a great start... More hard work, less fussing!

Jessie worked really hard today at walking with only one person assisting her. She held the ladder and intiated most of her steps throughout the day. Her posture appeared to be much better than last week and her stamina is increasing as she walks more than 100 steps each day at camp. Today Jessie was actually very happy when we arrived at camp and immediately started working hard to walk to the potty with her assistant Kristyn.

Last week, one of the moms of another child (Stephen) loaned us their Smirthwaite Mobi-Walker to try out.  Jessie has been using it around the Ronald McDonald House and actually initiated several steps with it when trying to get to a little toddler in the dining room yesterday. Jessie LOVES babies and toddlers and they are a big motivator for her.

Today we met a family from Jamaica here for Hyperbaric Oxygen Therapy (HBOT) for their 7-year old daughter. People seem to travel from far and wide for this treatment. I found out that in Jamaica, children her age do not receive many therapy services without having to pay out of pocket. Because of this, her daughter was not able to bear weight on her legs, use her hands, or talk.With all of Jessie's struggles and limitations, we have so much to be thankful for with the services we receive and the abilities Jessie DOES HAVE.

Saturday, we celebrated Sam's (daddy's) birthday at Sea World. The Ronald McDonald House gave us complimentary tickets to go there.  What a beautiful park with a huge variety of amazing wildlife to see and interact with! Shamu was the biggest hit and we were one of the lucky audience members to get drenched when he splashed his tail in the water!

 

Jessie finished the first week of camp with a smile!

After completing 25 hours of intense conductive education therapy, this week, we are already noticing small changes in Jessie. She is using the potty more, sitting up better, and using her words more to make requests.  Her walking is improving a little, but we still have a long way to go. The week has been challenging at times with Jessie not sleeping very well and pitching fits each morning when we arrive at camp (or even when I say the word "camp").

After a couple of days, Jessie's conductor Judith ("Yoo-dit") did not like Jessie's posture in the reverse walker, so she started using the wooden ladder for walking.  To prevent Jessie from bending her elbows too much, she put elbow splints on her arms. It was amazing to see how much more upright Jessie was standing and initiating steps with this setup. With all of the walking they do every day, I am convinced we will see major improvements in Jessie's walking by the end of camp.

Sammy celebrated his 8th birthday today and we had a little party at Chuck E. Cheese for him earlier this week.  He was excited that his mamaw came up to celebrate his special day with him. Sam and Sammy went to Universal Studios and Islands of Adventure this week to celebrate both of their b-days. We are going to Sea World tomorrow as a family to complete the week-long birthday celebrations! 

We have been staying here at the Ronald McDonald house and have enjoyed getting to meet other families who are staying here. Each night a different group of volunteers prepares dinner which makes it feel like a home away from home. We are hoping to get involved with volunteering at the Ronald McDonald house back in Charlotte when we return.  It is a wonderful charity that helps families stay together while children are hospitalized or receiving treatments.

What is conductive education?

This 60 minutes video provides a great introduction to Conductive Education, developed by Andres Peto in Budapest, Hungary in the 1940's.

www.facebook.com/video/video.php?v=89996815694

The link below contains an article entitled "Conductive Education: A Functional Skills Program for Children with Cerebral Palsy". It provides detailed information about conductive education programs and research comparing this method to traditional therapies in the US.
http://www.thetherapyplace.org/CE%20Article.pdf

Jessie's First Day at Camp

We survived the first day of camp and Jessie did pretty well, despite being completely exhausted from not sleeping very well the night before.  Jessie's teacher is named Ms. Judith (pronounced Yoodit) and she is a conductor from Hungary. Each child in the class has a personal assistant helping them go through the daily routine. Jessie's assistant is Ms. Josie and she is very sweet.

The daily routine involves walking about 30 feet to the potty upon arrival, stretching for about 30 minutes, sitting, kneeling, standing, eating lunch, more walking and lots of transitions in between.  For the more involved kids like Jessie, they have 2 people helping the the child to move and transition between positions.  The idea is that through daily repitition of these movements, the child will eventually begin to make the movements by him or herself.

According to the teacher's report, Jessie had a good day (3 on a scale of 1 - 5).  She worked hard at tall kneeling during the standing program and sitting criss-cross alone. She ate well and used the potty once.

I spoke to several of the other moms and found that two of the families are doing Hyperbaric Oxygen Therapy (HBOT) with their children.  This is an experimental treatment for CP and has not been scientifically proven to help with CP, although the treatment is FDA-approved for promoting wound healing among other things.  Both parents I spoke to said they noticed dramatic improvements in their children's cognitive functioning after HBOT.  We are going to look into getting HBOT for Jessie when we get back to Charlotte.  If anyone has any input on this, I would love to hear your thoughts!

Deja Vu! Video EEG's again....

On June 20, Jessie was admitted to CMC hospital in Charlotte for round-the-clock video EEG testing.  Jessie's neurologist scheduled the tests to determine if she was having seizures during times when she would "zone out" over the past few months.

Back in December 2010, Jessie did have a seizure one morning while sitting on the potty before school.  She was very quiet that morning, appearing sleepier than usual. When Sam stepped away to get a pull-up, Jessie fell off the potty and bit her lip. She was lying on the floor in a pool of blood and didn't even cry! When Sam picked her up, her eyes were moving rapidly back and forth, her head was turned to the right and her right arm was sticking out. Sam called me in the bathroom and after watching her, we both agreed that she was probably having a seizure. This was her first seizure since 2007. Sam took her to the ER straight away and after lots of waiting and testing, the neurologist agreed that it was probably a seizure. He did not recommend any treatment for this isolated event, but asked that we continue to watch her and call if it occured again.

Jessie did not have any more episodes like this one, but in the months that followed, she had periodic spells of "zoning out" at school and at home. Her progress at school and in therapy seemed to plateau in March, so we called the neurologist for advice. He then decided that we should have the Video-EEG testing done, but due to heavy demand for this testing in Charlotte, we had to wait 3 months for an appointment.

Sitting with Jessie in that 9th floor hospital room in the Epilepsy unit at CMC brought back memories of our visit there back in 2007 when she was just 8 months old.  At that time, Jessie had been having a rare type of seizure called "Infantile Spasms", which presented as large jack-knife movements of her entire body. The myriad of electrodes and wires glued around Jessie's head were just like they had been 4 years ago, only now she had a lot more hair to navigate. I couldn't help but think that Jessie remembered that visit 4 years ago because the first words out of her mouth every time someone entered the room were either "All Done" or "Bye Bye"!

On a positive note, the testing did not reveal any seizures. While sleeping, Jessie had several "discharges" in the left parietal lobe of her brain. According to the neurologist, this type of activity is normal for children with brain damage like Jessie. It could be an indicator of seizures to come, or it could just be her "normal" activity.

It was nice to have so much time with Jessie over our 3-day visit to the hospital, but we were both glad to be discharged on June 22. And after lots of washing and brushing (and whining and fussing from Jessie), we were finally able to get all of the glue out of Jessie's hair!

How it all began...

When Jessica was born 8 weeks early, nobody knew the difficult road that lie ahead. She was a beautiful baby with brown hair and brown eyes weighing just 3 pounds 10 ounces. Jessie stayed in the NICU for 4 weeks and seemed to be doing fine, so she came home. Over the next months, Jessie did not progress as she should have. By 6 months old, we started seeking early intervention support for Jessie because she was not able to sit up, roll, or crawl.

At 7 months old, Jessie was hospitalized after having her first seizure. Through lots of testing, we found out that Jessie had suffered a type of brain damage called PVL (Periventricular Leukomalacia) due to loss of oxygen and blood flow to her brain either during pregnancy or at the time of her birth. The doctors told us that there was a high probability that she would be mentally and physically delayed, and may never walk or talk. Her seizures were treated with 8 weeks of corticosteroid injections followed by 2 years on the ketogenic diet. We chose the diet in place of daily medications to maximize her alertness, ability to learn, and possibly prevent future seizures.

By 12 months old, it was clear that Jessie had significant motor delays and she was diagnosed with spastic quadriplegia cerebral palsy (CP). CP is a disorder that affects muscle tone and the ability to coordinate body movements. It often leads to other health issues including vision, hearing, speech, and learning. CP is usually caused by a brain injury that occurs around the time of a child's birth when blood and oxygen flow to the brain are lost and brain cells then die. It is most predominant in children born prematurely and affects roughly 1 in 500,000 children. There is no cure for CP, but therapy, equipment, and sometimes surgery can help a child’s functioning level.

Jessie has struggled to learn to talk, walk, use her hands, and become potty trained. While she has made a lot of progress over the past 3 years through special education, physical, occupational, aquatic, and speech therapies, she still has a long way to go. We are hopeful that she will one day exceed our expectations and lead a full life.

Jessie participated in an intensive conductive education therapy camp in the summer of 2009. This experience was life-changing for Jessie! She became more socially aware, began using the potty, and took her first steps with a walker at camp. Conductive education is a method that originated in Hungary and involves an intense multi-disciplinary approach to teaching children with motor disabilities. It combines academics with physical activities through repeated daily tasks and movements. It is based on the idea that the brain has the potential to re-wire itself with appropriate stimulation and repetition. Conductive education is done in a classroom setting with other children at similar functional levels.

The camp we will be attending this summer is at the Conductive Education Center of Orlando (http://www.cecfl.org/) and runs for four weeks, five hours per day. We are hoping that Jessie will learn to stand and take steps independently with her walker (she currently is able to take steps with assistance) and progress with potty training this summer. We also hope that Jessie will make strides in her cognitive functioning and communication abilities. We will keep you updated of her progress through this blog and please feel free to comment on the blog and let us know your thoughts and ideas.