It's been awhile since we've done an update, so we thought we would bring everyone up to speed on the latest!
Yesterday, at Mass was Anointing of the Sick. Easton and Gus' mom (who is also dealing with cancer) were able to receive that special sacrament & be blessed! It was a very powerful Mass and of course made me an emotional mess! Easton saw that I was crying & after he had the oils on him, he looked at me and said " Mom, I feel better already!!" His amazing heart!! Always worried about others! The message was, Even though some of us maybe sick or dealing with some very heavy issues, or even deal with depression. We need to take time to live in the moment! If we are constantly worried about what might or might not happen, we are missing out on all the joys life is giving us right now! Of course that hit very close to home. As I'm sure for a lot of others as well! We as human beings, worry about the future, especially if we can't control it! I feel like if I'm prepared it won't be as hard! Although there is a happy balance and enjoying what is right in front of us is what we can do to make those special memories & be thankful for taking the time to create them!
Easton had his scan and checkup last month in St. Louis. He had been collecting pajamas in town to take to all the children in the Hospital! We were able to take 521 pairs of pajamas along with some slippers, and some very special items that the Oncology & Pulmonary floors had on their wish list!!! They were all blown away by all the efforts & so very thankful for everyone who donated & made that possible!! It was a very heart warming experience & Easton couldn't stop smiling! It made him feel so good to see everyone come together & give to so many people!!! We know we made so many kids feel so special!
I'm also happy to report that Easton's scan was stable!! No growth. Although we've had to make some other changes. Easton had been feeling dizzy again & having headaches. Fatigue is still another part that is just the new norm now. After seeing our Pulmonologist and watching Easton's ventilator while he sleeps, he still wasn't getting ventilated enough so we increased the size of his trach and he's showing some improvement! They also had to increase his medication again, And they have increased his physical therapy to 2 days a week now. All these pieces to the puzzle that are so hard to figure out what symptom is caused from what ailment!? I could go on & on but overall we are very thankful that we have such an amazing team of Doctors that come together to figure out what treatment plan is best for Easton. Under such difficult circumstances... for that, I am thankful!
Easton has also been dealing with some respiratory infections off & on since October! We've done several rounds of antibiotics, heated humidity and his percussion vest. I think its safe to say he is finally on the mend! This time of year with all he colds & flu makes it so hard to keep him well, due to some of these colds being airborne, with him having an open airway he catches everything! His Drs recommened keeping him home , because they worry that he could start to have a resistance to some of the antibiotics and they wouldn't be effective, So we've been keeping him home again from school and doing some home bound studies. Hopefully once Spring comes, Easton can go back to school... He really misses his friend's
We hope everyone has a very Merry Christmas! We know from personal experience how difficult this time of year can be, with all the busy schedules and missing the ones who aren't with us, and worrying about if this could be the last for some... But for now, live in the moment and enjoy everyday as if it were our last! God shows us so many blessings everyday if we just open our hearts and eyes to Him!
God Bless and thank you for continuing to keep Easton in your prayers!