Sunday, September 27, 2015

Our story, and why we need your help.

I tend to forget most don't know so let start at The Beginning... 
At 18 weeks we had our first ultra sound to find out the sex of the baby. We found out that day that our precious baby would be born with a birth defect that would effect her for the rest of her life. That changed our lives forever, Our daughter would be born with Spina Bifida. The next day I saw a specialist and I was told that she would be paralyzed from the waist down, she would be in a wheelchair for the rest of her life and she will possibly be mentally delayed and her quality of life wouldn't be so great. She also went as far as to suggest to abort asked me to seriously consider it. After that day I went home did all the research I could and found that kids with Spina Bifida are amazing and grow up to be productive members of society that have jobs and kids. We decided that we wouldn't give up on her.

We have been incredibly lucky to have family surround us help during this time.

We decided to become apart of a study for babies with the birth defect Spina Bifida and the study was to find that repairing the back of the baby while its still in the mother then close the mother back up and wait till term compared to just closing the back after the baby is born. The study was a 50/50 chance to get the surgery but the catch was that the study was in San Fransisco and I would have to have another adult to stay with me during the whole pregnancy from 24 weeks till you give birth and then however long the baby stays in NICU on top of that. So our problem was Payton and we wouldn't be able to pay our bills if Nick left. It turned out we didn't get elected for the surgery which was devastating but I was soon happy to spend the rest of my Pregnancy home as a family and I didn't have to leave Payton. At 34 1/2 weeks I started having allot of contractions as the week progressed they got worse so since we remained in the study we had to fly back to San Fransisco to have Emma there. So everyone started to become worried that I would end up having Emma in Phoenix and not in San Fran like we wanted because the doctors are the best there. I got on a plan 35 weeks with my Mom and stayed there for 2 weeks before I gave birth to Emma. I was separated from Payton for a total of almost 6 weeks and it was one of the worst things I have ever gone through to be away from your child so long because he was 2 at that time.

We stayed in a house similar to the Ronald McDonald House the whole time. Emma was in the NICU for two weeks.

Emma had her first surgery at one day old to close her back, one week old she had a shunt placed in her head. At 16 months old she had to have a revision of her shunt again because it failed. After that at 2 she had eye surgery to correct her eye. Next was at 4 she had major back surgery for detethering surgery and was in the hospital for a week. And last was this year she had  tendon release in her leg, foot, and toes.

My sweet baby girl is trying so hard to bounce back from this last surgery. I have been beating my head into a wall trying to get her to do therapy and its so difficult. She also had bent the metal on her brand new HKAFO's Shriners made so we had to go back to Tampa 4 hours away to find out that they would have to be rebuild so they took another 3 weeks. So they fix them and yes they are great fit her perfect. Ok Emma doesn't like being in them now because she is working so much more now since she is weaker and doesn't want to wear them so we fight about them. The problem is she goes to school now just in her chair with no way to get up and move around and get out of her chair. Well the solution we came up with is the Mobile stander this will stay at school during the week and brought home on the weekends

This one in the picture is the actual one we want to get her and is called a Rifton Dynamic Mobil Stander. This allow her to stretch her legs and strengthen all at the same time and the best part is she will be standing tall with her peers. She will get in and out of it through the day. Now the worst part of Emma's Spina Bifida is her head aches and right now she has had allot, along with allot of back pain. Come to find out it's probably her chair. So the next I find out is that typically kids need a complete modification of their chair ever 2 years. She already needs a bunch of parts like new wheels, cushion, screws, brakes need to be fixed, back cushion. So possibly looking at almost the cost of a new chair , which is a real possibility right now because she has beaten her chair up. So if the cost is the same we will request for a new chair instead. We are looking at the Colours Razor Blade Jr wheelchair.
so this is where I ask you for your help. We started a GoFundMe for Emma and we are asking for any donation you are willing to give us. The other part is I ask you to share our story we your friends and family and spread the word. Our family is so grateful for everyones help and support, from the bottom of our hearts we thank you.