Family Time

We are so blessed to have so many of Lesa’s California/Oregon family members visiting us this week!

We did some exploring today around Hershey and Harrisburg and it was so fun to show them our world, our lives here.

   
    
    
    
    
    
    
    
   

Painting the Porch…

When we first saw our current house (nearly three years ago) I knew that I wanted to paint the porch white. I love green but it just didn’t fit well with the brick.

  

So, I mentioned to my Dad that maybe we could do that during their week here. He always likes to have projects to do when he visits, so he took it on!

   
    
   
We are in love with our “new” porch! It is so perfect! Thank you so much, Dad! ❤️

Tori’s First Birthday Present 

We bought Tori a first birthday present! (Brennan is holding her feeding equipment,because we forgot the pole).  

With the ever-increasing amount of equipment she requires, it became quickly evident that a “new” vehicle would be necessary. Her adaptive stroller doesn’t even fit in our current trunk well.

We got an amazing deal on this 2011 minivan (only 63,500 miles on it!) and we get to pick it up on Monday (there was a recall on a window switch for the van so they have to fix it before we can have it). 

We are so excited!

Tori’s Adaptive Stroller

The Zippie Voyage was delivered today! 

Many families wait MONTHS to get their equipment, which is just wrong. We are so blessed that it took only three weeks! 

   
 This stroller has a pole for feedings, an O2 tank holder, and plenty of room for all of the equipment she requires. Plus, it provides amazing support for her body.

The man who delivered it said that he can’t believe our insurance approved everything they asked for without even a question. He has never seen that happen. Praise the Lord! 

We can’t wait to get her out and about more in this, though it doesn’t currently fit in our vehicles…we are working on that 😉 God is so good!

Now Tori will fit in with all the cool kids next year at the Symposium 😉❤️

#ToriTuesday Update

We updated so frequently while in New York last week that there isn’t much to say today! 

She was just weighed and is up to 14lbs 12oz –  almost 15lbs! 

She is doing really well overall, and we are so thankful. 

Family from California and Oregon will start arriving on Sunday to celebrate her birthday with us. We are so excited for her party on the 25th! 😄❤️

Thank you for continuing to pray for her and for us. We feel your prayers! Please continue to ask God for her complete healing here on earth…we will hope until the end that He will do so. ❤️

Tori’s Bucket List

As we talked with other families at the Hunter’s Hope Symposium we discovered that many of them had “bucket lists” of things they wanted to experience with their children while they are still with us. We decided to create one for Tori, as well!

This is a work-in-progress, but here is the current list Brennan and I decided on (most of the ideas are from Team Tori!). We tried to choose mostly local things but a few would require travel. I will add to this post if we come up with more.

We may not get all of this done, but it will still help us remain focused on truly living life with Tori to the fullest. ❤️

  • Feed Giraffes (August in Pittsburgh)
  • Beach/sand castle (September)
  • Harrisburg Senators Game (soon)
  • Hershey Bears Game (fall)
  • Build a Bear
  • See where mommy and daddy went to college (APU and PSU)
  • Penn State game (September)
  • Pride of the Susquehanna 
  • Grand Canyon (October)
  • Baltimore Aquarium (September)
  • Statue of Liberty/Staten Island Ferry
  • Disneyland (October?) or Disney World
  • Catch fireflies (July)
  • Have a picnic at Lake Tobias (July)
  • Philadelphia Flyers game
  • Planetarium (PA State Museum)
  • Butterflies at Hershey Gardens
  • Go to as many states as possible (PA, CA, MD, NY so far)
  • Fishing
  • Kayak in the creek (August)
  • Finger paint something for mommy and daddy
  • Daddy/Daughter Date (with mommy there to help/photograph)
  • Boardwalk at Hersheypark – Lazy River 
  • Feed ducks

In case you are wondering, she does not qualify for any Make-a-Wish type programs because of her age. Any trips will be paid for out of our budget, so cost is a determining factor 😄 So if you have any connections to make these things happen and would like to help us, please let us know! ❤️

Hunter’s Hope Symposium: Day Four

Today was a “free day” for families to do as they pleased. Most spent time at the pool and relaxed around the resort.

Brennan played golf with three of the other fathers this morning in fog! The course is also on the side of a mountain which made it a challenge. 

We took Tori to the pool again and she loved it so much that she fell asleep! She was so relaxed!

   
    
    
    
    
 Later, Brennan treated me to a massage at the spa here at the hotel while he watched Tori. I married so well 😉 I thoroughly enjoyed my much-needed massage and tried to just relax and let my mind be quiet for once. It felt so good.

  
After dinner the kids did a talent show for all of us and it was amazing. There were several beautiful, emotional moments and much laughter as well.

   
    
 Many of us stayed late visiting, holding babies, and enjoying our last night together. The hardest part about leaving is that we don’t know if all of these babies will be back next summer. The tentative dates for next year’s symposium fall on Tori’s 2nd birthday, so we pray that she is well and able to travel so that we can celebrate with our leukodystrophy family. 

   
    
    
Brennan talking to Jill and Erin Kelly about Tori while holding Collin…

    

 I loved watching the siblings of affected children this week as they loved on all the affected babies.

   
  
 Tori and Gemma had a sleepover on the table 😉❤️😴

  
Tomorrow morning we will drive back to Pennsylvania, but we are already looking forward to our next Hunter’s Hope Symposium. ❤️