Jesmyluk

Liam's final message,  I Love You *Warning*  The following is not for those who cannot handle grief &/or raw emotions & does contain a few swear words.  February 2, 2021 This year just gets harder & harder.  For the first time in 5+ years, Liam & I are once again in the hospital.  After the New Year, Liam started having a harder time breathing & he was choking more easily when he swallowed.  We talked with his pulmonologist who was worried about infection so he prescribed a 6-day Z-pack.  He also asked us to up the breathing treatments to every 4 hours to help clear secretions & to keep him informed on Liam's progress.  He seemed to get better, had fewer secretions but he was still choking easily when drinking & eating.  We started virtual speech therapy, tried thickeners, & other tools to help him choke less but nothing seemed to work consistently. Both myself & the physical therapist noticed he was starti...

Our beautiful boy, Liam was taken off the vent at 7:30pm last night, (the 25th of February), he passed away this morning (the 26th of February) at 10:40am. He is free of AT & reuniting w family in heaven today. There are no words that can truly express how we all feel this morning. Grateful to have had such an amazing soul as an integral part of this family for the last 19 years. Grateful for the outpouring of love we've felt from all of you. Grateful for the memories we each hold of Liam. And devastated by the loss of our sweet baby Liam. There is a piece of our hearts that is no longer with us & we feel its loss keenly. Walk, run, fly free our Liam. We love you so much, thank you for choosing our family as your forever family. We learned so much from you. Your smile, laugh, wit, heart, & hugs are greatly missed sweet boy. We love you now & forever. ❤️ Mom & Dad. PS. In honor of Rare Disease Day this Sunday the 28th of February please consider donating to the A...

The months of September, October, & December flew by, as is their wont to do.  School, work, errands, tests, presentations, assignments, check-ups, dentist visits, new arrangements at CA's work (for the better), lots of baking, cooking, cleaning, shopping, holidays, celebrations, parties, gifts, & candy made the time fly.  All the same exciting/ordinary things that happen in your houses too.  Hence the no reporting on them.  No news is good news, so it's said. As we are on Christmas break here & I am all caught up, for the minute, w my responsibilities, I thought I would take a minute to ponder the great wonders of the universe.  Not really.  Just passing on some things I've thought about or noticed lately.  Nothing earth-shattering, nothing that will change the face of human existence or even everyday life that goes on in this house.  Just "things". For example; we moved here to Wisconsin July 1st, 2011.  We've been here 6.5 ...

Yesterday CA, Liam, & I had a very busy day at Children's Hospital of Wisconsin (CHOW).  It was Liam's annual getting ready to go back to school check ups with his main specialists. We had 4 appointments starting at 10:30 in the morning & ending at 4 in the afternoon. This is a normal hospital day for Liam & I, but his dad was able to take off work to accompany us.  Thank goodness because getting Liam to the bathroom is getting harder for me as he is just about the same size I am, height wise.  We also see the specialists every spring (end of the school year).  It used to be everyone wanted us in there every 3 months so they could keep a close eye on his frail health, but we usually ended up seeing them once a month because he was constantly sick or at least talking to them at length over the phone.  But it has been nearly 2 years since Liam's last hospital stay.  Right at that point, they decided that IgG infusions weren't enough to keep h...