Exploring Red Bluff

It’s amazing how you can take your hometown for granted, how you can completely miss the beauty of where you live simply because you see it all the time.

When I lived here I didn’t always appreciate the subtle things that make our area beautiful. The huge mountains are obvious and I love those, but there are so many things I appreciate now more with each visit.

One thing I love about Red Bluff is the abundance of oak trees. I went out today in search of a single oak tree in a field to photograph. I drove around for two hours and never found exactly what I was hoping to find, but I found some beautiful areas in the meantime. Here are some photos from my phone and my camera.

Continually look for the beauty all around you. God’s creation is diverse and amazing – there’s always beauty to be found.

 

Mother’s Day Surprise

While my dad was still in Pennsylvania with us, I came up with a plan to fly to California for a week over Mother’s Day weekend as a surprise for my mom and grandmothers (and everyone else). Brennan and I had enough miles through United to make the trip practically free and I had the availability, so we booked the trip!

Tuesday morning, bright and early, I boarded a plane in Harrisburg and arrived in San Francisco an hour early (the pilot had a lead foot πŸ˜‰ ). That was even after Air Traffic Control told them to slow their approach. πŸ™‚

Here are a few photos of the scenery we saw as we flew across the country:

My dad picked me up and we headed north to Red Bluff (a little over three hours).

My mom, a Customer Service Manager at Walmart, was still at work when we arrived. Because I hadn’t yet seen the brand new store that opened the week after Tori went to Heaven, we decided to go to the store to surprise her.

We had hoped to find her rather than have her see us.

Well, the reveal didn’t go exactly as planned because she found my dad first (I was in an aisle shopping) and saw my purse – exactly like hers – in the cart. She asked my dad why he had her purse and he had no answer! πŸ™‚ I came around the corner and saw her there and she was shocked. Needless to say, she had no idea that I was coming.

I’ve been able to spend time with family and a couple of friends thus far, and we have meetings with the staff of my parents’ legislators to discuss Newborn Screening for Krabbe. California has seen legislation for this in the past (as recent as 2012) but has never added Krabbe to their panel. We’re seeking to change that.

It is going to be a great week at “home” and I’m so glad we were able to make this happen.

 

Tori’s Bucket List: Jump in a Puddle

One of the greatest childhood joys is jumping in puddles. It’s as if there is a magnet pulling kids toward puddles and they just have to play in them!

So, we decided that Tori needed to play in a puddle, too. We added this to Tori’s Bucket List, borrowed boots (thanks, Laura!), and waited for rain.

It rained quite a bit last night at our aunt and uncle’s home in New York, so we decided this was the time!

Tori liked the noise and her eyes were open the entire time. It was a fun little adventure for her. We love giving Tori these simple experiences that most children enjoy ❀️

 

 

The Road Trip that Almost Was…

In early January we purchased our plane tickets for ten days in California with my family and we were SO looking forward to being out there. We had planned to do so many fun things with Tori and added things to her bucket list.

Earlier this week, I found out from United that we needed to have a form signed by her doctor as proof that she requires continuous oxygen. So, I sent it over to Dr. Escolar’s office on Monday.

Yesterday, I still hadn’t received the form back so I contacted them. I was told that Dr. Escolar wanted to talk to me because she was very concerned about Tori flying.

Three and a half hours before we were supposed to leave for the airport I was told that it is extremely dangerous for her to fly. 

I was very surprised to hear her say this because we told them last month we would be taking her to California. Nothing was said about the dangers of flying.

She has hydrocephalus (too much fluid in the skull) and apparently the pressure from flying could have killed her. 

I told Brennan what had transpired and mentioned the idea of driving to California. It would “only” be 40 hours, afterall. He agreed and we were both excited to be spontaneous – we like to plan things thoroughly. We both enjoy traveling and adventure, and road trips are awesome.

Thankfully we had purchased the travel insurance – first time ever – so we knew we would get our money back in full.

What a perfect bucket list addition a cross-country road trip would be!

So, we hopped in the van and left Harrisburg at 5:45pm. We stopped near Cleveland to sleep – which proved to be impossible for me since I had so much caffeine running through my veins.

I laid there awake for hours and finally decided to get on Facebook to pass the time.

One of my elementary school teachers had commented  on our post about driving there that I-80 (our intended route) gets pretty high in elevation over the Rockies. I looked it up and saw that it reaches 8,900 feet – almost as high as the initial ascent when flying!

Around 5:30am I woke Brennan up and asked what he thought we should do, given the fact that I didn’t sleep more than two hours (and we were both too exhausted to drive 12-16 hours today), and the fact that Tori shouldn’t go up in elevation that much until we see a neurosurgeon.

We both agreed that we should turn around and drive back home (less than five hours). It’s not the fun decision, but it’s best for Tori. 

We are so disappointed for so many reasons, but we are going to make the best of Brennan’s time off and enjoy family time together.

The remodeling will still go as planned – we will just keep Tori in the basement away from the dust.

We are praying that we will get even one more opportunity to take Tori to California to be with my side of the family, but for now we are grateful for all the times she has already been there, and we’ll focus on that.

Tori’s Bucket List: Go To a Philadelphia Flyers Game

Any children of ours will grow up to be Philadelphia fans if Brennan has anything to say about it. Brennan loves the Phillies, Eagles, and, of course, the Flyers. This was an easy addition to Tori’s adventures!

A Team Tori friend saw this on Tori’s bucket list and not only contacted the Flyers about donating tickets (which they did), but she also surprised us and contacted Courtyard by Marriott to ask them to donate a room for us since the game was at night on a Tuesday (and they did!).

When we arrived at the hotel before the game, she had also brought us a bag of snacks, water, and a few other things, like the Flyers ornament in the pictures below!

Thank you, Victoria, for making this happen!

Another Team Tori friend had a headband made specifically for this adventure and we LOVE it! It was so perfect! Thank you, Brittany!

Special thanks to the Flyers organization for making special accommodations for Tori so that we could have the best possible evening with her. Michael in Ticket Sales ensured that we had accessible seats and then helped us have access to an outlet for Tori’s suction machine, which isn’t holding a charge lately. Our ushers, Sarah and Marti, were so sweet and kind to us!

Tori enjoyed the lights of the pre-game events and didn’t mind the loud music. It was very chilly where we were sitting because the air vents were blowing directly on us, so Brennan went back to the car and got a second blanket for Tori to make sure she was warm enough.

After the first period it was apparently nap time πŸ˜‰

Even though the Flyers lost in a shootout, it was still a great evening! We’re so thankful for all who made this possible!

Tori’s Bucket List: Feed Giraffes (Philadelphia Edition)

As you know by now, the giraffe has become Tori’s mascot, so to speak. We have been told that whenever people see giraffes they think of – and pray for – Tori.

We were contacted by a Team Tori follower a couple of months ago about going to the Philadelphia Zoo to feed giraffes, and we couldn’t resist the opportunity!

Our expectations were shattered once the zookeeper came to facilitate the experience. We were RIGHT THERE with the giraffes, no huge fences separating us. It was amazing!

It was a perfect day – the weather, the fall foliage, the giraffe feeding, everything. We had such a great day as a family. Tori even got to experience face painting! πŸ™‚

Thank you, Raynor Family, Danielle, and the Philadelphia Zoo for making this happen! ❀

Tori’s Bucket List: Pumpkin Patch

When we were considering what adventures to put on Tori’s Bucket List, one of the categories of thought was “Things every child should do” and this one shaped many of the items on the list.

Since Fall was quickly approaching, we realized that going to a pumpkin patch was a must!

Once we added it to the list, we had two people step up and offer to make this outing happen around the same time, so we gladly accepted both and had so much fun. Thanks to Brandi and her family, and the Saunders family, for bringing this bucket list item to fruition!

On Saturday, we visited a pumpkin patch in Lancaster, thanks to Brandi and family. Tori got to see a corn maze, watch Daddy jump really high, see animals, and get a pumpkin!

On Sunday, we visited a pumpkin patch in Newport, and Tori got to feel dried corn, pick a pumpkin, see goats and turkeys, and spend time with her friend Hannah!

Thanks to all who made these experiences possible! It was so much fun and Tori was so alert both days. ❀