Happy New Year!
It started out with a bang - literally. Melissa’s Dad, brother-in-law, and a good friend of ours took out the wall between our living and dining room. This allows Levi to remain in the living room on the soft carpet while still being able to see everyone scurry around the rest of the main floor. What a difference it has made! Because Levi is not mobile, he had started to get very upset anytime someone left the room. This solves that problem for him, and we are extremely grateful to those that helped accomplish this. You can check out the photos tab to see what a difference it makes!
The biggest event in his life this year will be the addition of his little sister - making him a big brother. He adores his new little cousin, Emma, so we are sure that he is going to love having another little one around. Although the idea of someone else taking Mommy’s attention is probably not too exciting. ;)
We will not only be adding to our family this year, but to our house as well. Our current space will also need to be renovated. We live in an old 2 story farmhouse. We love our house, but unfortunately it is not anywhere near being handicap accessible. Currently all of the bedrooms are on the second floor of the house. This has been okay up to this point, but as Levi grows it will become increasingly more difficult to carry him from floor to floor. Plus, we really want to work hard to save him from any possible embarrassment. This is very important to us. We want to make sure that he can have as much independence as possible. He will already have people constantly staring because of his wheelchair. We are striving to make our home his safe haven - mentally, emotionally, and physically. A place where he can thrive. Our plan is to have an open concept main floor with a bedroom and bathroom suited for his needs as well as a master bedroom, so that Kyle and I can be near when he needs us during the night.
We are very blessed to be at our current location, which is why we will be renovating this house instead of looking at other possible locations. We live on 4 acres and less than a quarter mile from the school (which we can see from our driveway) with a paved bike path that leads all the way there. Because our house is on a gravel road, we also have plans to add an asphalt sidewalk from our driveway to the bike path. We are starting up a t-shirt fundraiser to help with the costs of these modifications.
Levi will be getting his first chair next week. We are very excited for this as the stroller is becoming very uncomfortable for him. This chair will properly position him which is very important for many different reasons. We will make sure to post pictures once he gets it! We are also in the process of getting him a stander, and at the end of this year we will be pursing a motorized wheelchair for him.
We also have plans to attend the Cure CMD Family Conference in June. This will allow us to meet other families as well as the doctors and scientists that are currently working on finding possible treatments. We have been told that this is a great time of learning and fellowship with others in similar situations.
We appreciate all the prayers that all of you are offering up on our behalf. We would ask for prayers as we drudge through this yucky flu season. Children with LCMD tend to see a faster progression of the disease if they have to fight off any kind of infection. This is when most children have lost their ability to walk, stand, sit up, etc. Because Levi cannot do any of these things we are not sure what an increased progression would look like, but we do not want to find out. So prayers for health are key! Prayers for our family as we transition from 5 to 6 would also be appreciated.