Change Lucy's Life!
**Updated January 21, 2016**
Lucy's life has changed dramatically since her addition was built. Over time, her respiratory strength declined - as is the case with SMA - and last October she had surgery for a tracheostomy. She is doing well, and the trach has made life much easier and more comfortable for her. However, because of her size, and the fact the trach is a bit more delicate than her bipap, we are in need of a new change in her life... a van!
Currently, we have a van with a lift and layout that is not compatible with her chair, which has to lie flat. We have lifted her into the van and onto the back bench seat since she was just over a year old, strapping her in with a special harness. Fast forward five years, and she is a large six-and-a-half-year-old girl who is all dangly arms and legs - and now with a trach that must be carefully balanced and held during transfers. Lifting her and carrying her into the van has become harder on us, and more dangerous for her. She is nearly the length of the bench on which she lies, and her stroller is heavy with machinery, making it harder with each passing year for her dad to lift into the back of the van.
We have found what we think will be a perfectly suitable used wheelchair van, currently owned by another SMA family. We are hoping to purchase this van ASAP! Plans were to wait until we received our taxes and take out a loan for the remainder, but this opportunity arose, and the value for the van they're offering is great ($13,999!), so we're hoping to jump on this opportunity! Any donations toward Lucy having a safe mode of transportation are greatly appreciated!
Five years ago, my husband and I purchased our first home. It was - is - a fixer-upper. We were just starting out in life, and figured we could fix as we went. When we plan, God laughs :)
Since her trach surgery, and with her growing even more rapidly after the surgery, our need for a suitable van for her has become urgent. Lucy's size and fragility demand that she be able to travel in her chair, without the transferring and carrying in and out of the van, like we currently do. She will also be receiving a bigger wheelchair in the spring - one I don't think will even fit in the back of our current van. Another SMA family is selling their van, at a great value, and our hope is to be able to purchase from them! If you would like to contribute to this goal, we would be so thankful! We are also grateful for prayers for everything to fall into place as we look for safe transportation for Lucy. Thank you for always being there for our family, in so many different ways!
The estimate ended up coming in at just over $97k, and we had an additional unexpected expense when the plans for the original tub were changed. We did have a greatly successful rummage sale over the summer, headed by our friend Marjorie and a crew of fabulous helpers, which raised close to $1,000!
However much we end up raising in the end, we will make these payments work - we kind of have to; the building is already here ;) We're hoping to be able to move in during the end of September. It can't come soon enough - Lucy has been sick for almost two weeks, and while we've been incredibly blessed to be able to avoid the hospital, she's been isolated to her room, as she can't make the trip up and down the stairs safely. She also finally had her first bath in that time frame yesterday - with the new shower in the addition, we won't have to worry about safely bathing her when she can't control her secretions!
With every dollar donated, every share, every prayer, you have done an incredible thing - you have quite literally changed the way Lucy will be able to live her life. It will be monumental. Words can't express how grateful we are for all of you, or how grateful we are to have been working with the contractor, subcontractors, and suppliers that we have been. They have been kind, and not only accommodating, but have bent over backwards to make this project doable for us.
We still have some time before the big reveal, but here are a couple of the addition elements that will have the biggest impact on Lucy's life!
There is no way that we'd be able to do this without the generosity from all of you! Lucy seems to have had another growth spurt recently, and is even more cramped in the tub. With all of the gloomy, rainy weather this spring, it's harder for her to control her secretions, which means some days we can't get her safely downstairs. This addition will put an end to all that! You are truly changing Lucy's life, and we couldn't be more thankful.