We have had a rough couple of days since we have been back. I believe it was Sunday we were doing the tiles with Logan and in the beginning he started to cough and just didn’t have the strength to cough whatever it was up. I turned to Brett and said “we may not have 4 months”. We nodded in agreement but then immediate said “we aren’t going to think this way.” And we moved on with our activity with smiles for Logan. This has been happening more and more and especially in the morning. I’m thankful for the cough assist we have. Otherwise I’m not sure if he would get over his coughing fits. He absolutely hates the machines with a fierce passion, but it helps him to stop turning different shades of red so I deal with it currently.
He also has started waking up scream/crying. As if he has seen something that terrified him. It is heartbreaking and it takes 5 or so minutes to calm him down. We aren’t sure what is happening. It happened about a month ago regularly then stopped. It started up Monday, twice yesterday but only once today. It hurts my heart to hear him do that 😦
We should find out tomorrow when they are scheduling his G-tube surgery. He doesn’t have issues swallowing right now, but he will in the future from what we understand. So the theory is if we do it now while he is strong, we will have less complications. Plus we can keep bottle feeding him until he is having problems. The thing that really sucks is we will need to go back to St Louis to see a pediatric surgeon and Children’s Miracle Network does not cover anything outside of Springfield. So the sleep study we did last week will be on us after insurance and so will the surgery. Ugh…I’m not looking forward to those bills. But I have put them out of my mind because knowing hospitals, it will be 2-3 months before we even see one.
Logan had fun playing on his jungle mat today. He used to hate it whether on his stomach or back. Today he seemed intrigued by the flashing lights above him. He was cranky most of the day…still not sure why. However he did have his super happy moments that always makes my heart melt. This may sound dumb but anytime we have a moment like that together I will close my eyes and try to burn it into my memory. I don’t ever want to forget our special times like that.
We are pushing more than ever to get things done on Logan’s bucket list. Plus we are adding more to it all the time! We want to try and experience as much as we can with him. Its hard knowing he won’t be here forever, but harder knowing he won’t move. We have a few big things lined up for him but waiting for them to be solid before we get our hopes up too much.
Carey closed out the Park Lane jewelry show tonight. However, she is opening up a new one tomorrow because of what a great response we got! I can’t wait to hear the numbers and let everyone know 🙂 I’m ready for some great news.
Our other friend Heather Murphy is a Lindt Chocolate representative and has graciously opened an online show for us with all proceeds going for Logan and his care. This is perfect with Valentines coming up! You can shop at this link: http://www.mylindtchocolatersvp.com/shop/catalog.aspx?eventId=E7355&from=DIRECTLINK. You can also visit our Facebook event for it on Logan’s page to see all the specials and updates: https://www.facebook.com/events/292654350856795/
Our school district is also gracious heading up a fundraiser for us! We received the news while we were in St Louis last week. It is called “Kisses for Logan”. Parents can purchase lip shaped suckers for $.50 a piece with all proceeds going to Logan and his care. The suckers will then be delivered to students on Valentines!
We have been so overwhelmed by everyone reaching out to help us in so many different ways. It is absolutely incredible! I think I say this almost every time, but we really do mean it!!! Thank you so much for helping us spread the word about Logan and SMA. We appreciate it more than you could ever know.
And now for the many faces of Logan while playing lol