Tuesday, May 31, 2011

Bee-worthy Shares

This BeeUtiful musical scrapbook was made by Chrissy's mom, Angela.
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Un-Bee-lievable Tuesday

Today we bring you yet another amazing accomplishment of one of our bees!

Chrissy Mason has been in Physical Therapy since she was an infant. She has made progress over the years, with some set backs, depending on her health status. When she  was two years old, she was standing with her therapist, and trying to take steps. However, as time went by it was harder and harder for her to stand. Her tone was so high that her hips were pulling out of joint. She ended up having bi-lateral femoral osteotomies, and was in a spica cast for 6 weeks. Afterwards, her standing was out of the question without more support. Chrissy then began standing in a piece of equipment called a "stander" when she was three years old. She has used  a stander ever since. Chrissy also has a back brace to help with her Kyphosis (pulling forward of the chest muscles, causing a "humped" appearance to the back). Chrissy's mother, Angela,  never thought she would see Chrissy stand on her own two feet again.

But recently, Chrissy has shown interest in weight bearing again on her own. While working on sitting straight and holding her head up, Chrissy has begun to put her feet flat and "push" with her leg muscles. 
This week Chrissy, at ten years old, (with support from her therapist) STOOD UP for the first time in six years!! Mom was there with the camera handy! Guess Chrissy's therapist will be coming up with some new goals!!!!

Un-Bee-Lieveable Chrissy!  Just shows us, once again, that we should never underestimate what these little miracles can do!! 

That smile on Chrissy's face says it all. She is proud of her hard work and we are proud of her!

Sunday, May 29, 2011

"Bee"-ography Monday

We are excited to bring you another life story written by the parent/caregiver of one of our amazing bees!

Noah's Story

Noah was born almost two weeks past his due date (26th June 2001) after a normal pregnancy and birth.  Everything seemed fine after he was born, except for a little trouble with his breathing, so he was taken to the special care nursery for a couple of hours.  After three days in hospital, we took him home.
Two days after we got home from hospital, Noah became very irritable. Jalen had reflux when he was a baby, so we thought we were unlucky to have a second baby with reflux and tried all the remedies we could think of.  A GP even sent us off for a barium swallow, which confirmed that he had reflux so he went on different medications, but nothing helped.   It seemed that whenever Noah was awake he was screaming uncontrollably.  He would arch back, stiffen his whole body and nothing we would do would relax him.   If he would wake in the night for a feed he would have a little feed and then scream solid for two hours before eventually wearing himself out and going back to sleep.  Nothing could consol him.
When Noah was around 4 weeks I kept waiting for his first smile.  This didn’t come and he continued to scream.  I also started to show him toys, hoping that he would start to follow them with his eyes, but it seemed that he was so upset by the ‘reflux’ that he couldn’t do anything except scream.  Finally after 5 or 6 weeks of trying different medications for reflux we were referred to a paediatrician, but was three weeks before we could get an appointment to see him.  Noah was now 9 weeks old. 
I took Noah into the paediatrician’s office and he asked me if that was Noah screaming in the waiting room. I told him it was and he said ‘it definitely sounds like we have a very unhappy boy’, and asked me a lot of questions.   I told him how Noah would start to settle after screaming for hours and then he would ‘yawn’ and arch back and then scream again.  I told him how he vomited all the time, and how he would hold his hands in fists all the time.  I told him how he always had his body turned or twisted to the left side. 
After examining Noah the paediatrician said that he wanted us to get some tests done – EEG, MRI, and a CT scan.  He said that he thought that Noah was ‘fitting’ (having seizures).  I was shocked as I thought I was taking my baby in with reflux, but was being told he may have epilepsy and asked when he wanted the tests done (thinking that he would say next week) and he said ‘today’.  I couldn’t believe that he wanted them done so quickly and I asked if it was okay if we did them the next day as I wanted to go home and tell Aaron first and process what we were being told, and he said to come into hospital and he would arrange everything.
I went home and Aaron what he said and said that it sounded like he may have epilepsy and we were of course upset, but thought things would be okay.   The next day I took Noah into hospital.  One of the nurses took Noah from me to ‘give me a break’ and took him up the hall so I could fill out the paperwork with another nurse as we were being admitted overnight.  I could hear him screaming up the hall and knew exactly how to settle him quickly but the nurses insisted that I have a break and ‘relax’, but I couldn’t as I knew that I was the only one who could settle him.
That afternoon we had a CT scan done.  The man doing the scan kept asking me lots of questions about my pregnancy and birth asking me if I had a traumatic birth etc.  I told him that everything was fine and he went and got a doctor to take a look at it.  They both looked at the screen very concerned and I heard the word ‘haemorrhage’.  They told me that the results would be given to my paediatrician who would talk to me about them later on and it was then that I really started to worry as I knew something was very wrong.
Later in the afternoon our paediatrician came to see me in the hospital and told me that they wont know anything for sure until the next day after they did an MRI, but it did look like there had ‘been a change in his brain’.  I asked if it was serious and he seemed to avoid my question and just said that we would know more the next day. 
The next day we had the EEG and MRI done.  A resident doctor from the ward actually came with us when we had the MRI done, and I knew that it was pretty serious, and he wouldn’t look at us very much, and kept saying ‘you know there has been a change in his brain right?’.  Finally our paediatrician came onto the ward in the afternoon and took Aaron and I into a room to tell us the news.  He showed us some scans of a normal brain. He pointed out the white and grey patches and showed us that a normal brain has lots of white and grey showing the parts of the brain. 
He then showed us the scans of Noah’s brain and said that when I was pregnant with Noah it looked like he had a stroke which caused him to have a lot of fluid in his brain.  He showed us how dark Noah’s brain scans were compared to a normal brain, and pointed out that this was the fluid.  He said that there was no way of knowing why it happened especially as I don’t smoke, and don’t drink alcohol and am healthy.
We sat in disbelief as we listened and I said ‘so he has brain damage’?  He said that he did and that there are different degrees of brain damage – ranging from someone who is developmentally delayed to someone who is reliant on others for everything.  He said that Noah was at ‘this end of the range’, and he motioned with his hands showing us the left side.   I asked ‘you mean the worst end?’ and he said ‘yes’. 
He then told us that Noah would never walk or talk, will never be able to go to the toilet on his own, is probably deaf and blind, won’t be very responsive to us and will rely on us for everything.  He also said that his body would become stiffer as he got older.
I listened to this and although I was shocked and sad I actually felt relieved as I knew that there was something wrong with him, and was glad to finally have some answers.  Our paediatrician then said that because of the amount of damage to Noah’s brain, that Noah’s life expectancy would be greatly shortened. 
I asked him how long he expected he would live for and he said that you couldn’t really say. I kept pushing for an answer and asked if he would live to be a teenager and he said that he wouldn’t.  I then asked him again how long he would live for and he still didn’t want to give me a figure.   I said ‘well, will he live to be one or live to be twelve!?’, and he then said ‘probably two to four years’. 
Aaron and I sat and cried together for a while as we tried to take it all in.  The doctor told us that his condition was called ‘hydranencephaly’ – ‘hydran’ meaning water or fluid and ‘cephaly’ meaning brain which meant that the brain was replaced with fluid.  So instead of him having hydrocephalus where there is a build up of fluid inside the skull, most of his brain was actually gone and replaced with the fluid.  Some kids with hydran suffer from hydrocephalus as well, but Noah has been lucky and hasn’t needed a shunt, but has microcephaly instead (a small head).
The same day the doctor started him on phenobarb for his seizures and we took him home the next day.   About two days later Noah was a completely different boy – he no longer screamed all day, but actually made baby sounds and even smiled now and then.  We realized that most of the screaming was because of the seizures he was having and the phenobarb definitely helped him. 
Because of his condition he has many health issues.  He suffers from spastic quadriparesis and uses a wheelchair full time.  He can not sit up at all or control any of his movements. He has been assessed as to having the physical and mental development of a three month old baby.  Because he can not move, he relies on us to move his body for him, both day and night to not only keep his muscles and limbs moving as much as possible to keep his muscles loose and for comfort, and also to relieve any pressure on his body to avoid pressure sores.  In the past he has needed treatments such as Botox injections to relax his muscles, followed by serial casting for six weeks at a time.
He is fed continuously using a pump via a PEG tube day and night.  When he was four months old he just stopped breast feeding one day and could no longer feed orally. The doctors said that he was just worn out from feeding and after trying to train him to feed with a bottle, a ng tube was inserted. A month later a PEG tube was inserted and since then he has been fed via the tube as he started to aspirate whenever he was fed orally.
Noah suffers from GERD (reflux) and has had an operation called a Nissen Fundoplication to prevent him from aspirating (which he often does), which results in aspiration pneumonia and hospitilisation.  He needs to have medication five times a day including up to eight different medications for seizures, muscle spasticity, secretions and constipation.   Because he doesn’t feed orally he requires oral care numerous times a day, and needs to have his mouth swabbed and cleaned frequently.
He has a lot of lung issues and has acquired bronchiectasis which is destruction and widening of the large airways. Because of this he requires four treatments every day via a nebuliser which also includes physio sessions twice a day of postural drainage to remove bronchial secretions, which is done by us, or his carers or aides when he is at school. These sessions take up to twenty minutes morning and night.  He requires suctioning around the clock and we use a portable suction machine that needs to be taken everywhere with Noah.  He also needs three different puffers, twice a day for his lung condition.  
Noah has been admitted to hospital over fifty times, and many of these times have been for pneumonia and other chest infections.
Noah has severe scoliosis and isn’t a candidate for surgery to correct it, because the doctors do not feel he could cope with such a big operation, and probably wouldn’t pull through it.  The curve in his spine is now so severe that it is pressing on his internal organs, and compromising his lung function even more.  The only option to treat his scoliosis has been to have a custom made body splint made for him by a company called ‘Second Skin’.  The suit cost almost $4000 and we have had to rely on funding from charities to cover the cost of having a new one made every 12 months or so.
Noah has gone through precocious puberty which has meant he has had massive growth spurts.  This has also meant that the curve in his spine has increased very quickly as his body has not coped with the growth spurts well.
Noah's body is very stiff and needs physio therapy and massage every single day to keep his limbs moving and to keep his muscles as loose as possible, so he can avoid getting contractures.  This takes a lot of time and is done at home every day, after being taught by his physio what to do.   
He also is in nappies full time and has neurogenic bladder which means he needs assistance to use his bowels and bladder including giving enemas, laxatives, bowel massage, and also doing bladder massage to get him to empty his bladder properly or he gets frequent urinary tract infections.  Without the assistance of us doing a bladder massage, he is unable to urinate and has bladder spasms making it even harder for him to go.
He has intractable seizures (seizures that are difficult to control), and has had them since birth, and may possibly have Lennox Gastaut Syndrome.  This has meant he has trialled many different medications to try to stop the seizures, as well as going to the Royal Children’s Hospital in Melbourne numerous times to try alternative treatments such as the ketogenic diet.  Unfortunately he still has seizures and has probably only had five days in total in his whole life, when he hasn’t had a seizure. On average he is still having around five seizures per day, and on a bad day can have up to ten.
Noah also suffers from osteoporosis and has had three fractures in the past three years, just from slight knocks.  He recently had his first treatment of bisphosphonate therapy to increase his bone density, and will be having this treatment every four months or so.

He is cortically visually impaired, which means that his eyes are okay, but his brain doesn’t register what his eyes are seeing.  We therefore have to do a lot of vision work with him to assist him in tracking and seeing objects. He does this vison work at school as well as hydrotheraphy.  He is lucky enough to be able to go to two different schools - part time at a special school and part time at a mainstream school.  When he goes to his special school he catches the bus to school.
Noah communicates with us in his own way.   We know when he is happy, upset, in pain or relaxed by the ‘baby’ sounds he makes and his body language and eyes.   Even though we were told he wouldn’t recognise us or respond to us he knows his family and familiar people and will respond with a smile or a look when you talk to him, or touch him. 
He is almost ten which means he has well exceeded the doctor’s expectations.  We have been told numerous times that the reason that Noah has lived so long with his condition is because of the love and care that we give him.  We are proactive in seeking treatments for him including alternative treatments such as a seeing a bioresonance therapist and chiropractor regularly
He is currently having oxygen energy therapy on a weekly basis, which has greatly improved his alertness. 
Life is definitely very hard at times and Noah has many trials in life, but we know how blessed we are to have Noah in our family and are so grateful for every single day that we have with him and love him so much.   We know that one day we will have to say goodbye to him for a short time, and until then we hope to give him the best life possible. 

We try not to count the days that we will have with Noah on this earth, but try to make each day count.
We would love any comments about Noah’s story on our family blog which is http://lisajking.blogspot.com/2011/05/noahs-story-page.html

Friday, May 27, 2011

Bee Buzz

Bee Buzz will be bringing you all the latest news about the foundation and our wonderful families. Welcome to our first edition!

The Brayden Alexander Global Foundation for Hydranencephaly has a lot of exciting things planned. We will bring you details on everything very soon! Right now we would like to focus your attention on what is happening right now. If anyone has not see our new website - please check it out! We are adding to it all the time. Even if you have already checked it out, come back for another visit. It includes a page highlighting the lovely jewelry Sonya is making for us. Everyone should also check out the lovely collage made by one of our very own bumblebee mom's. It includes the pictures of over fifty of our beautiful children. It is on the "Our Kids" page.

We are now on twitter! Please follow us on twitter and get the latest news and alerts about new posts on this blog.

We are also on Facebook. We have a discussion group there for parents and caregivers of children with hydranencephaly. We also have a Cause page and a foundation page. Please stop by and "like" our foundation page. We would also love to have you join our cause! Help us spread awareness about Hydranencephaly. Share this blog and these links with your family and friends!

We have started some new weekly posts here on the blog. "Bee"-ography Monday, Un-Bee-lievable Tuesday , Bee-worthy Shares and now Bee Buzz! We welcome posts and ideas from our families! Please submit pictures, stories, videos and ideas to mom2eth_n_cole@yahoo.com or ali_nichole0619@yahoo.com ~Thank you!

Wednesday, May 25, 2011

Monday, May 23, 2011

Un-Bee-lievable Tuesday

Today is the first installment of  Un-Bee-lievable Tuesday - amazing accomplishments about our little hydran miracles.

Brayden Harper has only been in preschool a few months.He has managed to win over all his teachers, therapists and fellow students. We are proud to announce that Brayden got "Student of the Month" for his preschool in April! Way to go Brayden!!!

 Brayden's award is proudly displayed on the school wall.

Brayden's mom, Alicia, was overwhelmed when she found out - by having several teachers AND the school principal show her where it was hanging.

He was chosen as the recipient of the award by his teacher for his ability to bring out the best in everyone who meets him, having the biggest smile and being such an asset to his class. Even though Brayden needs a little extra help with some things, he gives a lot too! His award says he loves school, music, nursery rhymes, and making his friends laugh.

Brayden himself also knows what a special accomplishment this is. When his classmates point out his award - his usual smile, gets even bigger!

Sunday, May 22, 2011

"Bee"-ography Mondays

It's that time again, another life story written by the parent/caregiver of another little bee. Be sure to check back every Monday for a new "Bee"-graphy & new daily posts to come as well.
Mackenzie Nelson was born September 15, 2006 weighing in at 6 pounds 1 ounce, 18 1/4 inches long. To us, she was a perfect little baby girl. It wasn't until about 5 weeks after she was born that we found out she had Hydranencephaly. 

After the shock wore off, I decided that I was not going to treat her any differently than I would if she didn't have this condition, and I was going to make it a life time goal to prove to these medical professionals that she is so much more than they made her out to be and that she could live life just as the rest of us.

From that day on, I have done everything in my power to unleash Mackenzie's hidden potential. 

In 2008, we took our first trip to Tijuana Mexico for her first round of stem cells. We noticed a huge change in her awareness and her muscle tightness seemed to improve some. 

In August 2008, we started going to REACH Family Institute in Oregon where our lives were again changed. They truly focus on Mackenzie's abilities and teach us how to teach her to improve those abilities. 

In April 2010, Mackenzie proved that she could see. She was tracking, focusing, and just all around more aware of her surroundings. She communicates a lot with her eyes. She also proved that she has the ability to be mobile. She started to move herself down an inclined plane on her own by moving an arm and leg on one side of her body. 

In July 2010, an arrogant therapist badly injured Mackenzie by forcing her into a frog legged position beyond her limits. He sprained both of her hips and both sides of her lower back. This caused an enormous regression, and to this day, we are still battling her hips. We are at the point now of having to make the decision of whether or not to do surgery. So frustrating as she was doing so well before this incident. 

Mackenzie eats orally, and does so very well. She is "underweight" to the medical professionals, but she is healthy and growing, so I don't worry too much about it as she doesn't have the muscles that an "abled" child does. 

When told, Mackenzie can give kisses, she loves music, and even has favorite songs. 
She absolutely adores her baby sister, and she definitely knows who people are in her life. 

She was fortunate not to have to have a shunt placed. Mackenzie's favorite things are swinging, bouncing on the big therapy ball (the rougher, the harder she laughs), listening to music, and being outside. Her favorite texture is silk, she loves to be around other children, and I truly believe that this has helped her in so many ways throughout her life. She does have seizures, and is on Keppra to control them. She has not had a seizure in about 2 1/2 months now. 

Mackenzie has touched to lives of so many people. In fact, people that have never even met her have been touched by her story and her strength. She has changed my life in more ways than I can even begin to explain, the biggest being my outlook on life I guess. She has opened a door to a world I didn't even know existed, and I have become a much stronger person because of her. 
It is the support of others that has also helped me find this strength, and to see that there is life beyond the words of uneducated medical professionals. 

~Desiray Nelson, mother

Monday, May 16, 2011

"Bee"-ography Mondays

Starting today I will be sharing a story of one little bumblebee, our amazing little ones with a hydranencephaly diagnosis, every Monday in "bee"-ography Mondays. The stories will be written by their parent and/or caregiver and shared here... a tribute to their life and legacy to the cause. In doing this I hope to help those reading better understand these little lives that have such a huge impact on the ones that love them, while also changing the many misconceptions that exist surrounding this diagnosis. I encourage you to check back every Monday to read these inspiring stories that are sure to help you believe in the power of love and the strength of our little miracles.

Gabby was born June 24, 2009. Her diagnosis of Hydranencephaly came three days after her birth when doctors began noticing tremors and her temperature wouldn't regulate. A cat scan was completed due to these symptoms and that is when we found out her diagnosis.

After we found out her diagnosis, we were not given much hope for our little girl. We were told she would never make it to her first birthday and that babies with this condition live a poor quality of life. 

Gabby not only made it to her first birthday, but she excelled in everything. She ripped out her feed tube and began taking bottle, then at 10 months she began eating solids (far from the doctors telling us she will never feed by mouth). She advanced through the stages of food and even began eating table foods. She loved her food.

 Gabby began walking with assistance at just nine months. She would walk up my chest and she would walk across the floor if you held her under her arms. This was very far from the vegetative state we were told she would be in. Gabby expressed her needs by crying when she was in pain or when she was hungry. When doctors held her she would cry, but as soon as they gave her to mommy, she was fine. One doctor even commented "she knows who you are". 

 Gabby loved playing with toys that had a cause and effect. She played music on her toy piano, and enjoyed toys that you touched a button and it played music. Gabby would not hit the button until the music stopped. One thing we enjoyed the most was hearing her laughter and giggles. She got excited over babies crying and certain toys. 

Gabby was an amazing child who accomplished so much more then the doctors ever said. She proved to doctors that there is far more to a child with this condition and that they are far from a vegetative state. Gabby inspired many of her medical doctors to research this diagnosis a little more. 

 Gabby passed away at 17 months due to her heart stopping after she aspirated shortly after a rescue med was given.