Thursday, October 30, 2014

Two days

We are in the final days of Gavin's fundraiser. I wanted to tell you a little bit about a normal day with Gavin and how the spina bifida association helps him and will continue to help him throughout his life which is why it's so important to us to raise money. 

I think that a lot of people see Gavin and have zero idea of what we deal with on the daily basis. I think we shelter the world from what a day with Gavin is like, I'm not sure if we are sheltering you or him but either way it's important to know a little about what our life is like. This isn't for pity, we are so blessed and have the best case of a worse case scenario, this is so you know how important awareness and the SBA is to us.
Gavin has myleomeningocele, his lesion was from L-4- his sacral region. He also has hydrocephalus which requires him to have a VP shunt, this is inserted through the skull into the ventricles with tubing laying just beneath the skin down his neck and emptying any extra fluid into his abdomen. He also has Arnold Chiari and up until lately he has been asymptomatic. 
Gavin wears AFOs which are braces to help support and correct his ankles/feet. These are a blessing and a curse. They help his muscles Learn the right way to walk and support him so he doesn't fall constantly yet they cause pressure sores on his feet, since G has little to no feeling in his feet these can become serious blisters. We have fought several staph infections including MRSA and cellulitis. When Gavin gets a wound it takes him months to heal and it often looks worse before it looks better. We usually have to take a trip to the ER or pediatrician to get a high strength antibiotic and Jason spends hours cleaning and wrapping his wounds while watching for staph. 
Every week Gavin attends physical therapy, he's been attending PT for 3 years now and every day he gets a little bit stronger. 
Gavin has a neurogenic bladder and had kidney reflux when he was born. The kidney reflux has since corrected itself but his "oddly shaped" and small bladder just cannot hold urine on it's own. This means we have to catheterize him every 3 hours, this is a tedious task and getting on the right schedule can take years. This causes Gavin to have frequent UTIs (which causes him to have to take antibiotics to cure and since he's been on so many antibiotics there are only 2 that work for him). 
Gavin cannot control his bowel all the time, he often gets constipated and that causes his body to clean out during this time we go through at least 10 diapers a day. We've been on 2 different bowel programs neither has worked for him but we are still working on it. Sometimes he recognizes the pressure and can make it to the bathroom on time but most times we are too far from a bathroom to make it in time. Because of these two issues Gavin is and likely will be for the majority of his life in diapers. Out of all the things that we've encountered with spina bifida, this is the hardest for me to swallow. I want my child socially accepted and this makes it complicated. I still pack a diaper bag for my 5 year old son. Gavin also takes medicine to help his bladder hold more urine between cathing, this helps with leaking between times. He is on detrol. 
Along with everything else Gavin has an extremely sensitive gag reflex and high palate, he has texture issues and it's often hard to find a healthy food for him to eat. He's gotten much better but he still stays clear of pudding, mashed potatoes, gravies etc.. It takes him forever to chew pieces of meat and he often soaks his food in whatever drink we've given him at the dinner table (which is quite disgusting at times lol). 
Until recently we thought Gavin's Arnold chiari malformation was asymptomatic, but now we know it isn't. This is where the cerebellum is basically flattened and pulled down blocking the spinal column. Right now the symptoms we are experiencing with this are exhausting. Gavin often gets his emotions confused, if he is happy he may act out as mad or sad and when sad he often laughs. This has made discipline almost impossible. When scolded or punished he often laughs (which at first infuriated me) until we realized this is a psychosocial problem associated with AC. Spanking isn't an option since he cannot feel it and he doesn't care if you take everything he has away. It's an exhausting situation and strenuous on our marriage as well with the other children since if they laughed at us for being punished  they would be in hot water. 
Finally I want to talk about my nemesis. The shunt. I will never forget how absolutely heartbroken I was when I got the call he would be having brain surgery the next day. Part of it was selfishness I realize, but the other prt was pure fear. Gavin will never play football,that was the first thing that went through my head, we are a HUGE football family and I realize now that was a selfish and shallow rationale but it was real at the time. Now the real fear is this- we've gone 5 (almost six years without a revision) every single day I wake up with that thought in my head "is today the day?" Because it is something that is inevitable, it will happen, will I know the signs? Will I get him to the hospital in time? Every headache, every morning he actually sleeps in or falls asleep at an abnormal time, every time he is dizzy or sick or acting not himself I have to ask "is this it?" 
There is no cure for spina bifida, Gavin will always have it, it will always be part of him but I will not allow it to define him. It's likely as he gets older he will lose his mobility and have complications but as of right now, we take it one day (and one crisis) at a time. 

Why we support the Spina Bifida association: 
The spina bifida association has been around since the early 70's it is the ONLY national voluntary health agency soley dedicated to enhancing the lives of people and families with people affected by spina bifida (which is the number one permenatntly disabling birth defect in the US). They are the ONLY ONES! The help educate, they help connect us with accurate information and reliable resources. Gavin will benefit from their resources for the remainder of his life and it's imperative that we fundraise to help them remain open. They offer scholarship programs as well, and we all know how important a college education is these days! 

So please consider helping Gavin this year by donating. No donation is too small. Even $5 helps us get closer to our goal   
If you feel led and can find it in your heart to donate $5 even $10 it would mean so much to our family and other families like us. You can donate here:
100% of the proceeds goes to the cause with that. 
Or you can order scentsy here:
Make sure you choose the party "spina bifida awareness" 20% of that goes to the cause. 
Thank you! 

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