We've officially begun fundraising for Bryce's 2013 Conductive Education Summer Camp at the Conductive Learning Center in Grand Rapids, Michigan.
We started yesterday afternoon and have been humbled by the generous support of our friends, family and extended network. We have already raised over $500! And while that is just a fraction of the total we will need, it makes this seem like a real possibility.
Our fundraising goal is $4,810. I know that is a LOT of money so I'm going to break down how we came to that total.
We're using the online fundraising tool Fundly, which allows us to accept credit card donations from anyone interested in helping Bryce reach his fullest potential. It's a fantastic tool because our supporters can donate as well as share our story and fundraiser with their network of friends and family via Facebook, Twitter and Email. We're already impressed with how this has helped to spread the message and optimistic it will further enable us to reach our goal.
I hope you will consider donating to our fundraiser. But if you can't (and if you can too!) please click on the image above and become a supporter - then tell everyone you know about Bryce and the big plans we have in store for our little fighter!
I'll be posting updates as we produce Bryce's assessment video, progress toward our goal, plan other fundraisers and know for sure that Bryce has been selected for the camp.
Wondering what happens if they don't accept Bryce's application? That won't stop us! We have a second choice camp in Orlando, Florida as a back up plan. No matter what I have to do, we'll get Bryce into a program! Thank you for your support and generosity!
Many of you may already know that Bryce is no longer receiving his regular therapy, except for hippotherapy. We had an insurance change effective November 30th that left us with no coverage for the sessions of physical therapy, occupational therapy and speech therapy that Bryce has been receiving at least weekly since he was six months old.
I didn't blog about it because, quite frankly, I was devastated. I felt like a failure. Valid or not, that is how I felt. My job as Bryce's mom is to care for him and give him every possible opportunity to reach his full potential that I possibly can. And in my mind's eye, that means I should be doing everything there is to be done. I considered regular therapy to be a vital part of that plan.
First I panicked, then I resigned myself to it and decided to enjoy the holidays and our time together before really getting down to brass tacks and figuring out our next step. Well, as the holidays came to a close I noticed that my feelings had begun to shift slightly. We had never had a real break from therapy and it was good to see that Bryce could continue to make some progress even without it. His speech is still a huge worry for us, especially since he's made little to no progress on that front in I don't even want to think about how long. But Bryce has begun balancing to stand for up to 20 seconds at a time. And our little turkey could definitely stand longer if he wasn't so determined to take a step, too!
Despite coming to terms, I've been racking my brain every second of every day trying to figure out our best next move. I'd considered leaving a job I love to find one with insurance but realized I'd have to work outside our home full time and then when and how would Bryce get to his 5 or more hourly therapy sessions per week?
We looked into changing insurance, thinking we could pay more if it gave us the coverage we needed, but low and behold - private insurance policies all have these ridiculously low therapy coverage limits. Even Caleb's policy through his employer would cost more per month than we could afford with a $3,000 deductible before covering just 25 visits per year. Bryce would use all of his visits in the first two months of the year.
Maybe I should stop working and we could qualify for CHIP or Medicaid but then how would we pay for our home and expenses?
The list of possibilities seemed endless but unfortunately so did the reasons why none of them would work for our Bryce.
Beyond frustrated I returned to the clinicaltrials.gov website where I periodically search for clinical studies that Bryce might qualify for and benefit from. And this time, for the first time, there were several I thought could be mutually beneficial for us and the studies.
I began contacting some and asking questions, filling out applications and medical histories, researching the studies and their leading doctors. And it was during the research of a constraint induced therapy study being held at the Columbia Teacher's College in New York that I accidentally found Ability Camp through a paid Google Ad.
I clicked that ad with full knowledge that it was an advertisement and was floored when the very first page showed video of children very much like Bryce making incredible strides in just 5 weeks at this intensive camp.
I had to know more.
So I read up on their method of teaching for children with Cerebral Palsy, traumatic brain injuries and other such brain related motor issues: conductive education.
First founded in Budapest, Hungary in the 1940's, conductive education was hidden behind the iron curtain for decades but has since become the standard of care for these children across Europe. Several years ago 60 Minutes did a segment on the methodology, which you can watch here:
Since that 60 Minutes segment Conductive Education has been spreading across the U.S. There aren't currently any facilities in Texas but 20 states now have CE centers. After thorough research we decided that this has to be our next step for Bryce. We simply can't pass up an opportunity to help him be more independent, to build his self confidence and maybe, just maybe, to walk.
I looked into the various programs being offered and have excitedly decided on the Conductive Learning Center in Grand Rapids, Michigan. Here is a video they did for their annual fundraiser a couple of years back:
We're hoping and praying that Bryce will be accepted to attend their summer camp this year. The summer camp is a 5 week intensive conductive education program where the children attend small group classes for 5 hours, 5 days per week. I can't begin to tell you how excited we are at the potential progress we hope for in that 5 weeks!
Of course, as you can imagine, this is no small endeavor for our little family. Things are tight, we have a 6 month old baby, Grand Rapids is on the other side of the country and a significant investment is necessary to make this a reality. It's a lofty goal but one we feel we have no choice but to go for.
And things are moving fast! The application deadline for the summer camp is February 1 but the center sells out of spots every year, maintaining a wait list each summer. So I sent in our application yesterday and will be sending in an assessment video by week's end. By God's grace, Bryce will be accepted into the program and there will be a spot still open for him. And then we'll be working our butts off to raise the funds to help cover the cost of driving to the center, staying at the Ronald McDonald house for 5 weeks and paying Bryce's tuition.
I hope you will all come on this adventure with us, as you have walked along the challenging, heart breaking, joyous journey of Bryce's life thus far. I'll be back in a couple of days with a video assesment of Bryce so we can all see where he is today and hopefully can look back this summer and see how far he has come.
Where has this year gone? It's been a wonderful year in the Moline home. Sure, we've had our fair share of stress and worry but we also expanded to four, had a lot of laughs and celebrated some pretty amazing milestones.
Thanks to everyone who thought of us, prayed for us, read my blog and stood by us throughout 2012. Here's hoping 2013 is even better, for our family and yours!
I'm so sorry for the time away. Life with two little ones is nothing short of a circus - wild animals are loose in my house, someone seems to always be screaming, the floors are filthy and we're constantly entertained. It's getting better as Gage is getting older and we're all getting accustomed to being a family of four.
But that's not why I'm here today. I'm here to ask for your help. When Bryce was in the NICU at Dell we were fortunate enough to meet a family who lived just a few miles from us. Their son Grayson was one of Bryce's NICU mates. We got to know each other during various times of stressful waiting in the NICU waiting room and over vigorous hand washing at the scrub sink. We learned that Grayson's dad cooked at his mother's restaraunt in Leander that we had frequently visited and enjoyed. Grayson went home well before Bryce so when Bryce was finally allowed to leave home one of the first places we took him was to that fabulous little O'Leander Cafe.
But as the years have been good to us and blessed Bryce with the passing of many milestones we never dared hope for, they have been hard and trying to Grayson's sweet family.
Tragically, Gail lost Grayson due to a mistake during a routine hospital stay in 2010. Grayson's mom, Gail, reached out to me last week and asked me to share the story of Grayson as well as Alex, the baby they were blessed with after losing Grayson. Alex is now heavily medically dependent and they are having a very hard time making ends meet.
I've known Gail since Bryce's NICU stay and I know asking for help must be incredibly difficult for her.
Please take a moment to read Gail's story:
"In January 2010 I lost my mother to cancer. This was fast and furious. Seemed like she was just diagnosed and then gone literally 5 weeks later. In March we brought our son Grayson into the hospital for an MRI and G- tube placement surgery. Sadly the hospital made an error and they left Grayson without oxygen long enough to leave him brain dead. Grayson was on life support for one week and then we had to let him go. So, I lost my mother then 2 months later I lost my son.
Now fast forward to January 2011. In January 2011 we were blessed with our third son Alexander. He was an exact copy of Grayson. They looked exactly alike. Alex seemed to be normal - no complications at least. At 3 months he started showing some symptoms similar to Grayson's. We immediately started testing: CT scans of the brain, blood work and eventually an MRI and EEG.
Now with Grayson, we had all kinds of genetic testing and everything came back normal. They said it was not genetic. That is, of course, until Alexanders MRI spectroscopy scan. It was a spitting image of Grayson's - to the T. At that time they said it was a Mitochondrial Metabolic Genetic Disorder. They immediately started Alexander on a vitamin therapy and seizure medications. Problem was that my cobra plan wouldn't cover the vitamins. They were $1,200.00 per month. Then we had to pay $2,200 for the cobra plan. Nine months later we eventually got MDCP medicaid. This helped with nursing and cutting out the cobra expense. They still would not cover the vitamins. The vitamins are extremely necessary. Without them Alex's brain cells would die off one by one. We held our heads high and gave Alex everything he needed. Alex was surprising everyone. He had mastered 2 sets of goals. We had just written his third set of goals to include walking. He was talking and singing all day long. He loved to play and interact and go for walks.
Now, on September 27th, 2012 we brought Alexander into the hospital for the first time since his diagnoses. He was having cold symptoms. When we arrived at the hospital ER they examined him and did some chest x-rays. His lungs seemed fine but he was working harder than he should have to to breathe. So they went ahead and put him on a c-pap machine. They admitted us and sent us to ICU. This was common, anytime I brought Grayson we would go to ICU as well.
Alex was still his normal happy self, talking and smiling. We hit the ICU floor at about 11:00 pm. The next morning at around 10:30 am I noticed that Alex needed some suctioning. I alerted the nurse who then alerted the respiratory therapist. The therapist came in and removed the C-Pap which was on 6 liters of oxygen. Then said oh wait I'll be right back in a minute. She still had not suctioned and did not put the c-pap on and left the room. I noticed very quickly that Alex need help he was in trouble. So I alerted the nurse. Alex's oxygen level was dropping fast. The nurse just stared at him. He was blue and at 20%. I started screaming and ran to the hall for help. The first nurse I saw looked at me and said "are those numbers for real?" I said yeah duh. So other help came. They were able to bag Alex back up once they finally got a bag. Because no - there was not one by his bed! No code blue was called for this incident.
So now we're stable and respiratory is back bagging. She tells the other respiratory therapist to go to supply and get him a clean attachment. The therapist comes back but not with the attachment he knew worked. He decided he would try another one. His mistake is that he didn't also bring the one that he knew worked. So he tried the part and it had an 97% air leak. It didn't work. Instead of going to get the part he knew worked he decided he was going to try and make this piece work.
Well it didn't and before you knew it Alex was dead. Flat lined. They were doing CPR. They were able to bring him back and went ahead and ventilated him. Later that day the decided to put in a central line, which took them 5 hours to put in. Well 12 and half hours later, after pumping him full of fluids and medications, they realized that the central line was not in the vein. The ventilator could not ventilate his lungs. There was too much fluid. They had to place an emergency chest tube to drain the fluid.
Devastating to say the least. The next two days were long. We had to wait 48 hours to have an MRI.
Results came from the MRI: Alex was in bad shape. They said they didn't think he would ever wake up again. Why? Because the two incidents had wiped out 90% of his brain stem. We were devastated The thought of never seeing his beautiful eyes open again seemed unimaginable. I'm happy to report the very next day he opened his eyes. What a relief.
In turn though, Alexander has not been able to breathe on his own again. So 2 weeks later we went ahead and did a tracheotomy surgery. He finally came home on September 12th with a trach and ventilator. Its been very rough.
There are many things that we need for the house to make it more adaptable for everyday needs. I have not been able to return to work as of yet. Hoping to start back soon. Christmas is around the corner and the bills are piling up. For instance I have one car payment left on my vehicle and I cant make the payment. They are threatening to pick it up. Our mortgage dilemma has been temporarily fixed. Our first payment for our trail modification is set for DEC 1st. I'm worried about this. I continue to keep the faith and focus on Alexander and our other son Christian, who started high school this year.
I hate asking for help but at this point we have no other choice. IF you can help or know someone who may be able to help please share our link. God granted me the opportunity to care for one of his most special gifts of all. For that I am thankful. God bless.
With Love,
Gail"
You can help this wonderful family in their time of need through the website YouCaring.com, here is the link to their fundraising page: Alex's Angel Fund
I'll do my best to keep you all updated with Alex's condition as I can. And I'll be back soon with news on the Moline boys as well.
We're settling into being a family of four quite nicely these days. It's challenging, no doubt, but as Gage gets bigger and continues to interact more and more with us, it gets more worth any challenges.
One of the things I'm most excited about is for Bryce to have someone to play with. Speaking as an only child, I know how easy it is to get too comfortable being alone or in the company of adults.
I am hopeful that having a brother will afford Bryce not just a playmate and confidant, but also a lifelong friend and role model.
On good days, I allow myself to dream of them being buds, sticking up for each other in school and maybe even raising their children near each other like the big family I always dreamed of for myself. But even if Bryce doesn't some day have a family of his own, I hope I'm able to raise Gage to be the kind of boy, brother and eventually man, that is always there for his brother.
I like to think this is the start of all of those hopes and dreams...their first playful interaction.
