Tuesday, January 7, 2014

catch up

I'm feeling a little guilty about not keeping up with Oliver's blog. The website sent us a 2013 reports and hundreds of people come to the blog each week to check on Oliver and we haven't written since October! Sorry team.

The thought of writing 3 months worth of recap is a bit overwhelming so I'll keep the update as short as possible and try to stay more on top of updates.

First big news, Oliver is a big brother! Thea Juliet was born a week late on 11/2. Oliver loves her and cuddles her all the time. However, he doesn't like that his once quiet house is sometimes filled with a fussy baby crying. He lets us know this by squeezing his eyes shut extra tight when she fusses too loudly for his liking. If he could still talk he'd say "Shush, shush, shush Thea!"

Next came Thanksgiving, where Ollie and Thea were hugged, kissed, held, and loved by our entire family. Our families are so important to us and seeing everyone bond with Thea and love up Ollie was wonderful.

In December Santa visited on a firetruck! (Thanks Water Witch Hose Co. #2 for delivering Santa to our door. And thanks for so much more!)

And we went to the Dream Come True Santa breakfast. Delicious and tons of fun!

We wore matching pjs

Had some smiles

And dressed like Santa



a lot..

Oliver got a really great piece of medical equipment called a Smartvest. We call it the shaky vest. Now we're using the Smartwrap because it's easier for us to get him in and out of and it doesn't agitate his gj tube. The Smartvest vibrates very quickly and in short it helps mucous from sticking to his lungs, breaks it up so he can cough it up and out!

Smart vest:

Smart Wrap

Christmas morning came and I guess the kids had been good because Santa brought lots of great toys.

Including a big squishy ball and Batman!

At Christmas with the family, much like at Thanksgiving, there were endless arms for holding and cuddling our kiddos.

Oliver's room was Batman-ified...

And he now has a sweet Batman snuggie thanks to his Aunt Ang.

And a sweet Batman hooded towel thanks to his Uncle Steve.

His Auntie Jess and Grammy completed what has been named "Oliver's picture project" which took months and months of hard work and firetruck hunting! It's worthy of it's own post, so more on that later.

As of today(holy moly I caught up!)
we are working on getting Oliver this great bed called the Comfylift bed, it will help tremendously with his night time positioning. He's growing so tall that our current set up is no longer working for him, he's been waking up in the middle of the night moaning, all squished up at the end of his bed(because it's inclined for his breathing and feeding). Poor kid! But this new bed is just what he needs, I sure I hope his new Batman sheets will fit it!

And now you're all caught up, phew!

Saturday, October 19, 2013

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.

Saturday, October 12, 2013

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.

Saturday, October 5, 2013

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!!!

Monday, September 30, 2013

September 2013

Here's Oliver getting ready to watch football. He's getting so big! He's been on a higher calorie formula and has gained over 2.5 pounds! Yah!

Unfortunately he's been fighting pneumonia on and off the past few weeks. It seems like he'll just be finishing the antibiotic course, have clear lungs for a few days and then aspirate again. It's frustrating, and nothing we're doing for him seems to be able to prevent it. When he has clear lungs we're able to get smiles from him, he's happy and alert. When his lungs are junky he sleeps all the time, needs constant suctioning, breathing treatments, is hooked up to the oxygen etc and just looks plain miserable. :( We wish he could just feel well for longer than a day here and there. It's just not fair.

We did get out of the house on Saturday and made it to Open Farm Day to see some animals.

It made us a little sad to remember the previous years we have attended Open Farm Day. Oliver was able to climb and play on the tractors, we have dozens of pictures of him pretending to drive them. He used to moo at the cows(though his moo sounded more like a satisfying Mmmmmmm). He could walk around, talk, point, express interest and pleasure. This year was quieter and sadder. We miss so much everything MLD has stolen from him.

On a happier note, Oliver is very excited for the arrival of his baby sister some time in the next few weeks! He hopes she's here for Halloween so they can go trick or treating together as Batman and a candy corn.