Hello everyone! I hope you all had a great day. Today was a good day. Pretty chaotic but its become the norm around here. Lena has been in a fantastic mood! She finally had a good bowel movement but sadly it upset her stomach so getting her to eat dinner wasnt easy. Eli brought me to tears today. He was playing in his room and things got quiet. As any parent knows, when a child gets quiet it usually means something is up. So I go in to check on him and see him bent down on the floor with a blanket on top of a box and some tape in his hand. He was crying. It took me by surprise so I sat there for a minute just watching him, careful not to let him know I was there. What I saw was him trying so so hard to put the wing back on a mosquito hawk. He bit off tiny pieces of tape and was trying to get the tape to hold the wing on. My eyes filled up with tears as I went up to him. I just wrapped my arms around him and hugged him. It reminded me of a time when I was about his age. We were riding in the car and a fly was flying all around. When I went to catch it and let it out the window my hand accidentally squished it. I cried for the rest of the day and even buried this poor fly. Eli reminds me of myself in so many ways. I explained to him that even taping the wing back on wouldnt fix the bug and he cried harder. He explained that he found it on the back porch when he took out the trash and that it had been partially stepped on. He kept telling me I just wanna save him mommy. Made me cry harder, thats almost exactly what I say to Arthur when Lena is seizing. I dont know if it was all about that bug or if it was kind of about the helplessness we all feel with Lenas seizures but it really warmed my heart to know how amazing and kindhearted my baby boy is. I do a lot of things wrong, Im not perfect. I dont think highly of myself at all and I kind of suck at being a human but when I see my babies and the incredible little people they are and they are becoming I realize I must be doing something right. I am so anxious for our move. I cant wait for it to be done and us to be there. From what we have been told, Lenas insurance should roll over to the county we move to in florida. Her insurance should remain active until we finish the paperwork there and it is approved. I really hope they are being honest and that happens. That would mean we can start treatment right away. We have finally found a place to move to and have already reserved it. All we have left to do is finish selling and donating our belongings. We should be moved there by the beginning of August. I am so excited to start her treatment, I pray Lena gets the much needed break. Not long after we get there, we get to celebrate the birthday of an amazing little girl who also has MWS like Lena. Being so close to that incredible family is a dream come true. I really feel that this is the right decision for us and we will finally be able to get Lena the help she needs. Im not sure how we will ever get used to how long it takes in florida to get just a few miles down the road. We are late for everything and knowing that 5 miles in florida means about 20 minutes of driving isnt gonna be easy. Please continue to pray for Lena. Pray we are able to finish getting rid of our things so we can head out. The sooner we get there the better. Im going to attempt to get an hour of sleep. Lena has to eat in a little more than an hour but after being on this schedule for over four years, an hour of sleep to me is like 24 hours of sleep. I take what I can get. I hope you all have a great day today! I will update later. God bless Love, The Price Family
Posted on: Wed, 23 Jul 2014 07:44:12 +0000
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