Showing posts with label Alternating Hemiplegia of Childhood. Show all posts
Showing posts with label Alternating Hemiplegia of Childhood. Show all posts

Nov 7, 2011

Fifth and Goal

Photobucket

He was 18 months old when they told us he would never walk - or talk - or have any civilized quality of life. They wanted to put a permanent feeding tube in him and put him in a half-way home. They told us we would not want to be burdened with raising a child with so many challenges. They patted us on the back and told us it would take a Billion dollars to “fix” him. They were the most distinguished hospital in the World – but he was our Son - and we wanted nothing to do with their advice.

He never got that feeding tube. He doesn’t take medications. His name is Carter, and he is our 8 year old son. Carter was born with a rare neuromuscular disorder called Alternating Hemiplegia of Childhood. There are about 340 cases in the World. It is a paralysis disorder, with episodes brought on by a wide array of triggers. Barometric pressure change and severe temperature swings account for many of his episodes. Over-stimulation or surprises from any source also cause paralysis. Through most of his life, Carter has faced these episodes nearly 75% of the time. Today, in the stable Texas climate – Carter deals with dramatically fewer episodes. There isn't a day that goes by that Carter isn’t affected by this disorder.
So here goes the story:

Carter’s younger brother, Spencer, plays flag football with the Lake Travis Youth Association. When the league struggled to put together enough coaches to handle the large number of kids, I reluctantly stepped up to fill a pair of coaching shoes. I had never coached football. As it turns out, teaching 5 and 6 year olds to play football could be better defined as herding ants.

This past Saturday was just another rewarding (um, frustrating) day on the field. My players were not listening or paying attention – and the other team was taking advantage. We were on the receiving end of a pretty good beating, but we managed to keep the game close. We were down by one touchdown with little time left in the game – and we were “lucky enough” to get the ball back. Unfortunately, we went through all four downs with no success. Our kids dropped the ball, ran the wrong direction, and got tackled behind the line on all four downs. We did all the wrong things and turned the ball over on downs.

It felt like five minutes had passed while the opposing team tried to get their offensive players out of the huddle. I was already irritated and could not understand how such a fast-paced game, with running time, all of the sudden felt like we were in a rain delay.

I caught some movement from our sideline – and looked over to find Coach Bill walking on the field with Carter at his side. Carter might be the biggest Lake Travis football fan in history - but he is not supposed to be on the field. He LOVES being at ALL the football games – especially Spencer’s. As they walked closer, Coach Bill said “Put Carter in at running back for this play.” “He can’t,” I said. “We turned the ball over on downs – and besides – he’s not even on the team.” “Just put him in and run the play,” Bill said. Getting more agitated, I said “Look, Bill – It’s not our ball and he doesn’t know what to do.” “Just listen to me and do this,” he said.

I turned to the head referee and said “hey stripes, am I missing something? Did we not just turn the ball over on downs?” He walked over, got eyeball to eyeball with me, and in a stern voice said “yes you did – but number 10 here is ready to get his first touchdown – are you okay with that?” Side note: Carter is a regular at all the games and practices, so he wears a “left-over” #10 jersey to all the LT games.

So with everyone on the field aware of what was developing - except for me and head coach Jen – we were given a “fifth down” and a dream come true. With Spencer at quarterback and Carter set up in I-formation, the sun stood still. For thirty seconds. And Carter ran 40 yards for a touchdown while everyone cheered for him. You would have thought we had just won the Super Bowl. I had never heard cheering like this. It was deafening. Carter had never shown so much emotion. He was so proud – and so were Sara and I. The head coach from the opposing team put Carter up on his shoulders and marched him around the field. Everyone rushed out on the field - and there wasn’t a dry eye to be found.



This is Carter’s story. One that beats adversity. One that overcomes challenges. One that opens hearts and changes lives. Carter is a gift from God and I treasure him with all my heart.

This is a beautiful story and I hope I am giving it justice. I still don’t know who made this happen – but everyone was on board. The opposing team, the parents, players, coaches and even the referees. In a heated moment with the game on the line – the Sun Stood Still – to give God the glory and give Carter a moment he WILL NEVER FORGET. It was a priceless moment. One of those moments you read about or watch on youtube – but never get to experience in the flesh.

I am honored to cast my deepest heart-felt appreciation to everyone at the field on Saturday. To the Bulverde (San Antonio) flag football team for lifting Carter up high – for one moment that will last a lifetime. To the coaches I work with – for making this moment so special and honoring Carter with a medal for his efforts. To the head referee, who with tears in his eyes and a choked-up voice, issued Carter the “official game coin” and suggested that we frame it and remember this day forever. To the parents and fans at the game – your cheering will ring in our heads for decades. To all of you that have helped with Carter - prayed for him - and gave us the hope and courage to fight for his future. Today, we lift all of you up – because you all deserve it.

This is a great story and I will cherish it forever… Whatever battles you may be fighting today – fight them with courage – and give all the glory to God. He has a plan for your life – even when it seems to be spinning out of control. It might require a “Fifth Down,” but He will be there for you – just give Him the reigns… Only He can make the Sun Stand Still.
Photobucket

Jul 13, 2011

Hunter: Now I Can

Photobucket
Watch this video of Hunter's therapy at Now I Can, an organization that does intensive physical therapy. Hunter's mom, Chrystal, said the therapy was a definite success and soon she'll be doing a more formal review of her experience at Now I Can. In the meantime, enjoy the song and lyrics that are the backdrop to Hunter's video: Now I Can by Jarrett Burns.

You knew all you had to do was plant a seed
And inch by inch, watch it grow in me
With every step, you knew all I had to take
Was a part of this, a part of finding my own way

'Cause it was buried in me, doubt and disbelief
Tiny and afraid, wanting to believe
There is so much more to me.

'Cause now I can
See what I couldn't see
That all I need is right here inside of me
And you showed me the keys

'Cause now I can
Do almost anything,
Overcome impossibilities
You gave this to me

Now I Can
Climb all the mountains
Or chase away the shadows,
Reach for the stars
And know that tomorrow
Could be whatever I can be today

Now I Can
See what I couldn't see
That all I need is right here inside of me
And you showed me the keys

Now I Can.



Now I Can needs your help to win up to $250,000 from the “Vivint Gives Back Project” to help children with disabilities!

Please take 30 seconds EACH DAY until August 27th to do something great for a special child.

Follow this link to vote for Now I Can.

Please contact Tracey with any questions: tracey@nowican.org.

Jan 27, 2010

Hunter's Story


My name is Chrystal Wagner. I have a wonderful husband and two beautiful children. Hunter is 4 ½ years old and Caitlin is 2 years old. We have lived in Lehi, Utah for 4 years now. Now to our story-

We had tried for a year to get pregnant with our first. After much frustration we turned to the doctor to do some fertility testing. Meanwhile we decided to start the adoption process just in case. Everything showed up fine with me but my husband ended up having a problem that only needed surgery to fix. Within six months I was finally pregnant and we were elated. My pregnancy went well and I was very healthy. I went all the way to my due date before going into labor. This is where the story starts to take a turn. I was in labor for something like 36 hours all said and done. When my contractions got close together we went to the hospital. Unfortunately I was not progressing. They kept sending me home and telling me to try and relax. Finally the following evening my husband called and said he was bringing me to the hospital and that they better admit me. After about 15 hours of labor, I was only dialated to a 2 ½. I wasn’t progressing but my contractions were really bad (all back labor). To sum it all up, I should have had a C-Section. I ended up on an epideral all night and had problems with my blood pressure which in turn put my son in distress. He was finally born the next morning. The doctor used forceps to pull him into the birth canal, but then I delivered him the rest of the way. He was too big for me and I ended up with 4th degree tearing. Not a fun first time experience!! He weighed in at 7lbs. 13oz. and was 20 ¼ inches long. He had a full head of hair and was just beautiful. He had some minor breathing issues at first so they took him to the NICU. I was able to go and get him from the NICU hours later.




Hunter did fine all day other than having a really high pitched cry. We were definitely not ready for what was about to unfold. Later on in the day they took Hunter to get his first bath. My husband went with to take pictures. As they were bathing him my husband noticed that his eyes were jumping (nystagmus), and he became alarmed. He told the nurse that it didn’t look normal and before he knew it the NICU team was there taking my sweet baby away again. They did an ultrasound that night and found grey spots on his brain. They told us they weren’t sure, but that they thought it might be cancer. We were devastated. The next day they ran a CT Scan and found a Occipital Lobe Fracture (from the forceps). This had caused residual bleeding and they thought that the swelling could be why his eyes were jumping. Hunter was in the NICU for the next 5 days. Other than the fracture we thought everything was fine. Once we got him home we learned differently. We had him home a little over a week when he started displaying seizure-like episodes. We called the pediatrician and he said to bring him right down. The doctor was able to see what we were talking about and immediately sent us to the PICU. Hunter had an EEG ran and an MRI. The EEG came back normal and the MRI showed residual bleeding on the front of his brain (forehead). At this point they still thought it was all from the fracture. Hunter’s problems continued and after a 24 hour EEG and other tests we still didn’t have any answers. We decided to head to Utah and see someone at Primary Children’s Medical Center. We showed them video of Hunter’s episodes and they had no idea what it was. At 5 months old, Hunter was diagnosed with Laryngomalasia which he needed surgery for. About a month later we noticed Hunter not using his right arm. We got very worried and immediately called the neurologist. We traveled once again to Salt Lake City for another visit. Dr. Lloyd (our neurologist) consulted with Dr. Swaboda about all of Hunter’s symptoms. After putting everything together they came to a diagnosis. Hunter had Alternating Hemiplegia of Childhood. We were fortunate that Dr. Swaboda was the one consulted about our son because she is actually the expert and one of the only neurologists researching Alternating Hemiplegia of Childhood. Hunter was 8 months old when diagnosed. What a blessing to be diagnosed as early as he was!



16 months old


It was such a relief to finally have a diagnosis. I now had a direction to go in to helping my son. AHC (Alternating Hemiplegia of Childhood) is a very rare disease (1 in 1 million) and the cause is unknown. There are less than 250 worldwide cases. There are a wide range of symptoms with this disease. Most of the kids with AHC display seizure-like episodes early on that seem to get better as they get older. They are all very sensitive to their environment, i.e. wind, water, cold temperatures, light, loud noises, unfamiliar people/places, and irregular eye movement or nystagmus. Later on the children start to display paralysis symptoms. The paralysis comes and goes and can be one side (meaning 1 arm and leg) or full body (bilateral). Most of the AHC children are very delayed and have speech problems. On the severe end some don’t ever walk or talk. There is also the chance of developing a seizure disorder as they get older.

They started Hunter on Topomax hoping to get the seizure-like episodes under control. We immediately started Early Intervention to help with his delay. He continued to work with therapist through EI until he turned 3 years old. Nine months ago we made the hard decision to finally get Hunter a g-tube. He gradually stopped eating and even fought his bottle. Since then, he has gained 8 pounds and is a lot stronger. We believe that this has had a great deal to do with his current progress. In the last 6 months, Hunter has started getting into and out of sitting by himself, pulling to kneeling, and on occasion he has pulled to standing. He is very active and we are hoping that he will eventually walk. He doesn’t talk (we believe this is something that has to do with the Topomax). He currently gets PT, OT, ST, and Special Needs Preschool all in-home.
Hunter is a happy little boy that brings joy to everyone he meets. He loves music and so we watch a lot of Barney, Wiggles, and High School Musical. He also loves sports, football being his absolute favorite. He is very delayed, but we love him just the same. I love his smile-it just lights up a room!! We get comments about his pretty blue eyes all the time.



3 Years Old


So our journey to this point hasn’t gone without its struggles. I just take it day by day, trying to give Hunter everything he needs. My advice to other parents dealing with any kind of diagnosis is to be an aggressive advocate for your child. Don’t let doctors tell you that they are “developmentally delayed” with no diagnosis. I believe that is cop out. Having a special needs child has changed my life. It has made me dig deep down to realize what is really important. Hunter is a HUGE blessing to us. We cherish everyday with him and love him for who he is. My advice for those needing support: reach out to other special needs parents (they always understand what you are going through to some degree). I have also followed a few blogs that always have inspirational things to help me. Above all l would mention that my faith in family and the support and love of others is what has got me to this point.



4 Years Old

LinkWithin

Related Posts with Thumbnails