Scary times

Oliver has had a very rough few days. His breathing is extremely labored and he's been on continuous oxygen since Wednesday. His circulation is poor and at times his hands and feet are ice cold with no capillary refill, a very ominous sign that things are starting to shut down. But right now they're pink and warm, so this symptom comes and goes. It's all very unpredictable, and we all know that he's one heck of a fighter.

He's only opened his eyes a few times in the past couple of days, but he's on a few medicines to increase his comfort, and they make him tired too. We haven't given up hope that he can overcome this, but we're still preparing ourselves for the inevitable and on Thursday his hospice nurse strongly suggested that we don't leave his side.

Chris and I have been sleeping on the floor in his bedroom each night, listening to his labored breathing and dreading each sporadic episode of apnea where he doesn't breathe at all. It's impossible to truly prepare for what we'll have to endure, and it makes it extra heartbreaking thinking about the possibility of him never meeting his little sister. We're living minute by minute right now.

We started him on an antibiotic yesterday, for no particular reason, we don't even know why he's taken such a sharp decline so quickly. We just want to give him the best chance possible. Meanwhile we're keeping him as comfy as possible with nonstop cuddles and kisses.

Need a new GJ

Oliver's GJ tube is starting to show signs of erosion so it's time to go back to Connecticut Children's and have a new one put in. His appointment is Monday afternoon, hopefully the current tube lasts until then! If it doesn't we'll have no way of administering his meds, or food, or fluids and he'd have to be admitted to the hospital.

Because he already has a GJ in place, the replacement procedure should be very simple. It still needs to be done in the Radiology department to make sure it's ending at the correct place in his small intestine. The good news is Oliver won't need to be put under, anesthesia is very dangerous for a child with MLD.


Ollie got to hang out with his Grammy on Sunday :)
(and Grampy and Uncle Greg)



Daddy gets Ollie ready for bed. Look how big he's gotten!


Ollie takes an early Saturday morning nap


A beautiful day for a fall walk with his favorite nurse.


Nap time with Dad.

5K For Ollie

If you'd like to participate in the SHU 5K on 10/19 for Oliver please go to: https://alsangels.ejoinme.org/MyPages/DonationPage/tabid/113190/Default.aspx and choose "Oliver Ciparelli Runner Donation" from the drop down menu. This fundraiser will support Oliver's Team and the MLD Foundation. Thanks again to the SHU Women's Lacrosse Team and Al's Angels for putting this event on. Hope to see many of you there and thanks for your support!!!