More Background

Friday, June 5, 2009

Foundation for the miracle M's
So busy around here these days. I am working on starting a medical foundation to assist with the kids extra therapies and such. We are lucky that their "medical" cost are mainly covered by our health insurance but therapy and other medical based activities are all on us. With 2 little ones that need so much we are working hard to figure it all out. I am working on starting a foundation for the kids to makes sure they get each and every possible opportunity to help them along the way. I keep them very involved in extra therapies, adaptive swim sessions, appropriate toys/equipment, etc.We recently learned about a feeding clinic in Baltimore Maryland. I have spoken with them and we are going to an evaluation on June 18th. David, Makenna and I will be driving to Baltimore on Wed to settle in for her evaluation on Thursday. She will be evaluated on Thursday and after dinner we will head home. The tip map quest out about 9 hours from our home. Mom will be keeping Maison to help out, thank you MOM!!!!We are having her evaluated for the 8 week intensive feeding program at the Kennedy Krieger Institute (http://www.kennedykrieger.org/kki_cp.jsp?pid=1408). We are under the impression that the waitlist right now would put us in around fall sometime. This is a HUGE STEP for Makenna, she could very well come home eating and eventually get her g tube removed and be a 100 % oral feeder. Some background on why Makenna needs this program so very much.We all eat because we learned when we were young and went through the stages (bottle, purees, solids, etc). Due to Makennas 3 month premature arrival and her brain injury she was unable to go through these stages and is unable to sustain life on her own without tube feeds. We have "pathways" in our brain that we use to plan eating. This can all be confusing especially when I have to type it all out. Basically we "know" to take a bite of a burger, we use our hands to grip the sandwich, we open our mouth, we close around the sandwich, we bite, we chew the req amount of times to break down the food, we swallow, we repeat. Makenna does not have the motor planned pathways to eat. She licks and mouths most foods but does not actually eat things successfully. With the intensive 8 week program they will work with her to train her to eat and build those motor pathways. There are no programs close to us with this wonderful program, so we will travel. I cannot stress how big this is!!!!When we travel Makenna, Maison and I will move to Baltimore for 8 weeks and live in the Ronald McDonald House near the institute. With all of this there will be many cost that are not covered by our insurance. Transportation to Baltimore, daily housing charges by the Ronald McDonald House, any time off for David to be with us during the 8 week time, etc.I am the first to do fundraisers for the March of Dimes and any local organization I can. I have never done fundraisers for us as I have a hard time asking for help. A close and very smart friend has worked with me over the past weeks letting me know it's ok to do this for the kids. We need to do this to make sure Makenna has every chance to gain her basic living skills. So here I go into a world I am so unfamiliar with......I am setting up a tax deductible organization so any donations will be a tax deduction for our family and friends.My first fundraising activity is a charity garage sale on July 18th!!!! I am asking anyone and everyone to donate any items they just want to get rid of to the sale. We will gladly pick up anything or you can drop it off, we will price and sell and thank you all the way for helping us out. Think of any furniture, household items, clothing, etc you don't want to mess with!!!! We will gladly sell it for you!!!! If you know someone who would like to help out please let me know I will be happy to email them.Stay tuned for foundation details and upcoming events.......Charity Garage Sale July 18thSpaghetti Dinner with Silent Auction......... Coming late summer