I am so sorry this has taken so long for me to update. I will touch on everything but not go into a lot of depth so that I can get this out. I have gotten so caught up in "Life" that time has gotten away from me. I had someone ask me if something was wrong with Caring Bridge that they were not getting notices and I got on the website and noticed I had not updated since May. So my last update was us leaving for Florida on our Family Vacation. We had a blast but we were so busy we didn't have a lot of computer time. But we spent time at Disney World. We visited Magic Kingdom, Hollywood Studios and Animal Kingdom. Margaret had a blast although we had lots of rain at all the parks, she really didn't get to ride a lot of things. She loved the Frozen and Finding Nemo plays. We didn't get to see as many characters as she wanted to but I think we got to see enough. We went to the Beach 2 times and I think she enjoyed it. I would say Daytona beach was her favorite because the sand was hard enough that she could drive on it. We played soccer with her. Meaning we kicked the ball to her and she would hit it back with her chair. She was excited. We did have a blast and enjoyed having a family vacation which was much needed. While we were there we met up with the Johnson family. Their son is a SCI patient as well. They live down there and it was great to see them again. After we left we then headed up the coast to Baltimore.
Baltimore was a little stressful this year due to her Rods and new chair. But we figured it out. She did the FES bike, Stander and I was a little surprised at the fact that she did not do a lot of sitting on the mat. But that was fine. They had her DEXA scan redone and Yeah it went up 14% which was great. So the meds we are using now are great. We were supposed to head back to New Jersey for Surgery and they cancelled it due to her activity in her left side of her diaphragm so we are working on some weaning some of the settings so I will do a better job of keeping you posted. So we did get to come home 3 weeks early which was great.
We were home for a week and then went down to my dad's for a week so Margaret could see her Pa Paw where we went to a drive in movie and then a carnival and hung out.
Since we have been home we have been to the Dr.'s about her sore and it is almost closed. We are just waiting on about a pencil eraser size place to scab over so it is amazing that we are getting it. On a upsetting note Margaret is having surgery on August 28th to have the Rods removed due to all the complications. It is pushing her head forward so much that is causing issues with us taking care of her trach needs. This is no ones fault it is just due to the fact that she has rods in her neck and then her back and they are not connected. She will be in school for a week then out again. So kind of frustrated that this is how school is starting again but it is life. So please continue to pray for the situation.
On an exciting note Patrick designed a Therapy Garden for Margaret with in the last year and it was finally started on Monday. We have all the concrete being either donated or paid for by a couple of individuals. We had the tires donated today for some of the landscaping, We are putting in a wheelchair swing, park bench, table, a fountain, possibly a birdbath (not sure on this one), flowers and some birdfeeders I think. We are still raising money for this. We will have to get it as we reach each goal to pay for it. If you would like to help with it you can go to her Go Fund Me page which is http://www.gofundme.com/htevrs or you can mail a check to the Margaret Romph Benefit Fund at P.O. Box 105762 Jefferson City, MO 65110.
Also Please save the Date for Margaret's 6th Annual Golf Benefit that helps with our trips out to Batlimore and New Jersey and this year depending on where things are sitting we may use some of it for her Therapy Garden. I am waiting on the links for the Golf tournament and then I will post them. We are donating a portion of the proceeds back to Missouri K.I.D.S which is a group that helps student athletes who are permanently injured. Margaret is a recipient of theirs as well. So we will be excited to help them out as well as they have been to us.
Thank you all so much for you thoughts and prayers and support. If you could please continue to pray for Margaret has she is healing from the pressure sore and her to heal quickly from this next surgery.
I am so sorry it took so long. I will get back into the swing of the things again from being gone. Have a great day and God Bless you all.