On 11/06/15 we learned that our unborn baby at the time also has SMA. There was a 25% chance the baby would have SMA and unfortunately our family has been struck with this again. Javier was born January 24, 2016.
We live in a 2 story house where the bedrooms are both located upstairs. Due to Mateo not being able to move and being connected to a ventilator (helps him breath) and pulse ox (monitors his heart rate and oxygen level) it is very dangerous and difficult to get him up and down the stairs. For the last 3 years the living room has been our bedroom. Mateo's bed and equipment take up one half the living room and Adan and I sleep on a very uncomfortable pull out couch. The bathroom is also located upstairs so Mateo gets baths in a blow up pool.
We now will also need to add the baby and all his/her equipment to the living room. We are very crowded but making the best of things.
Mateo deserves his own bedroom, a place he can sleep, play and have some privacy. Our living room currently functions as our bedroom, living room and dining room so it can be very difficult for Mateo to sleep/nap and we suspect that will be the same for the new baby.
We orignally decided to add on to our home, adding a big open concept bedroom for Mateo and now baby (with plenty of room for our pull out couch so when we don't have overnight nursing we can still sleep near them)and a handicap accessible bathroom over a year ago. We have the blueprints drawn up already and we were eager to move forward with building . After having a building inspector come in we learned that our foundation to our home was crap, as the walls had moved inward and need to be repaired. This put a damper on moving forward with the addition as we had to get the foundation fixed this summer. That was a good chunk of money and we had to take out a loan. The estimate for adding on the addition was over $85K, something we could not afford. We have decided at this point we will attempt to sell our home and find a ranch home to buy. Before we can put our home up for sale we need to get the roof fixed which is over $10K and fix a few things around the house.
With Mateo growing bigger and the addition of another special needs child we ordered a new handicap accessible van to accomodate both children. Money we had already raised is going towards a down payment for the van as it costs roughly $60,000. This will help ease the monthly payments we will have for the next 10 years .
We don't like asking for help, as we both work full-time to try and give Mateo everything he deserves but we would love to get Mateo and baby their bedroom sooner than later so we have more room in our crowded house to take care of two special needs children. We need some assistance in doing so, so we can put a good chunk of money down and apply for a loan for the rest. We have been blessed so much already on our journey with SMA so we thank anyone in advance for helping reach our goal!
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