I want to start off this post by thanking everyone for the success of both of our fundraisers! I thank you all, from the bottom of my heart, for the outpouring of support, love, donations, and encouragement we have received. Though I was not able to attend the golf outing I am enjoying the pictures that some of you have sent me and the funny stories of the days events. The turnout was outstanding and I heard from everyone that although Mother Nature didn’t provide the warmest of weather you all kept warm with the love for Scott and I.
The Cleveland event was awesome for me because for the first time since this event occurred I was face to face with many of the people that have been praying us on. The only world to describe that is “incredible”. I was so moved by the number of individuals that came to support us. Many of you drove from out of town just to give me a big hug! I’m sorry I missed some of you as there was a little hiccup at the hospital that evening so I couldn’t get to Strongsville as early as I had hoped. Though I was late, I was overwhelmed by the love. I think we had about 300 people and one raccoon that decided to try to sneak in to support Scott!
Thank you to Chrissy Arvin and the Calphalon gang for rallying together to pull off such an amazing event in Toledo! Thank you to Lindsey and Mom Fedor and all the others who pulled together the awesome event in Cleveland on such short notice!Thank you to all the individuals who donated items for both events! We couldn’t of had the events without you. Thank you to Southside and Sokolowski’s for the food and drink donations the Cleveland event wouldn’t have been so delicious without you! As I said at the event in Cleveland, these events allow us to spend our time focused on what is important and that is Scotts recovery and not the medical bills. I have to say that the outpouring of love and support that has been provided spiritually, emotionally and monetarily, have awed me. Thank you all so very much.
Ok..so now that I got my thank you’s out I will fill you all in on Scott. He is doing well. He is currently stable and things are still progressing forward. His name is on the list for the diaphragm pacer and today we were informed that we have approval from the University hospitals and Metro hospital to move on for approval on the insurance side of things. The reason we needed approval from two different hospitals is because though Metro does implant the pacing units they require money upfront while University Hospital allows us to bill insurance. Please pray that we can get this approved because I have a hunch we are a couple million dollars shy of getting the pacer paid for upfront! Getting Scott of the vent means that he will have so much more freedom, the abilityto taste, and the ability to smell. These basic things can significantly change the quality of Scotts life.
In other news, Scott’s liver enzymes are pretty much back to normal, however, he is still not allowed to have pain medications. The doctor doesn’t want to take the risk of having his enzymes skyrocket again. Scotts lungs are still pretty much the same. The bottom right lobe is still collapsed so they are still being very conservative with his treatment. During suctioning they are still pulling mucus plugs pretty much everyday. The speech pathologist has been allowing him some ice cream or applesauce during her sessions and so far he seems to be tolerating it well. The doctor said he would like to have another swallow study done before he gives the okay for Scott to eat.
Scott recently recieved his new rental sip and puff wheelchair! It’s a new power chair that works with Scotts control and with the option of me controlling it as well. Frankly, i am not such a good wheelchair driver so I hope Scott gets a chance to hone his skills soon! In the meantime, I pity anyone who chooses to walk down the hallway while I’m in control!
All in all, Scott is doing well. His anxiety, while still present, has been better. He tends to go up and down as the day progresses. One moment he is saying, “I will get better!” and then the next he is saying, “I do not want to live my life like this!” It’s a roller coaster and I understand it completely. I was really hoping the new chair would help Scott feel more independent but unfortunately he is feeling like he wants more. The ability to move the chair is nice but he doesn’t want to use a chair to move.
One thing we have both been very happy about is recently I have gotten the okay to crawl into bed with Scott. It’s a little awkward at first but it’s well worth it. Being close to one another helps us both feel like things are “normal” again. In those moments, I allow myself to believe that he can feel everything again. I let myself pretend that it’s July 2nd. I love those moments and I pray for a miracle so that someday Scott will indeed feel my touch. Another thing we are very happy about is Scott and I became aunt and uncle to our beautiful baby niece Anna. My brother and Amanda welcomed all 5lbs 11oz of her into the world on Friday afternoon. She decided to arrive 3 weeks early to her perpetually late parents! She is absolutely perfect and I get to meet her tomorrow. I’m going to take loads of pictures and videos for Uncle Scott to see!
I apologize to everyone for the delay in my posts. Things are extremely busy for me. I am in the process of getting a new apartment, getting movers set up, meeting with lawyers to devise plans get medicaid set up for Scott without Scott and i having to lose all of our assets, and learning Scotts care. I am learning how to suction Scotts lungs, change his folley bag, give him his injectable medications, change his catheter, drive his wheelchair and that’s just to name a few things. My days are so busy now that I never have time just to sit and write, though I wish I could because I do find this extremely therapeutic. By the time evening rolls around I’m paying bills and doing “household” stuff and too exhausted or busy to sit and type. Things are looking like they are getting much more streamlined so once more items get accomplished I will be a much more diligent writer!
Thank you all again for your love, prayers, support, and encouragement! Please continue to pray. The prayers are powerful and appreciated.