Vision Therapy Fun

Tori’s vision therapist always finds really creative ways to stimulate Tori’s senses – today we celebrated Mardi Gras a bit early :)

Besides looking at various items, Tori felt and listened to the beads, felt the unique texture of the feathers, and enjoyed the essential oils we were diffusing. The only sense she didn’t use was taste. :)

We multi-tasked and had her in her stander during therapy, which also gave her a fresh perspective.

We are so thankful for all of her Early Intervention therapists!

 

Eighteen Months

 

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Just a FEW of our favorite photos of Tori from the past eighteen months <3

Today marks Tori’s eighteen month “birthday” and it is quite a milestone in the world of Krabbe.
   
    
 

One year ago she was six months old; today she is only six months from her life expectancy.

One year ago today, as we sat in the emergency room, we wrote this post in an effort to recap for ourselves what had happened over the past month. We were desperately trying to put the pieces together in hopes that a solution would appear.

We wrote this post after her CT scan that evening showed brain abnormalities and we were left to wonder if our baby was going to live.

Two weeks later we received our answer.

The past year has been a whirlwind and a nightmare in many ways, and yet, it has also been a wonderful, purposeful, deliberate year filled with cherished moments and abundant memories.

Today we celebrate the fact that Tori is doing well, and we pray that she will exceed her life expectancy of 24 months. ❤️ We are so thankful for every moment the Lord allows us to have her with us.

Tori’s Medical Equipment 

I thought many of you might be interested in learning more about the various pieces of equipment in our home that help keep Tori healthy, nourished, and comfortable. Each of these help maintain her quality of life.

 Cough Assist:

  
This machine helps keep Tori’s lungs clear by simulating a cough – something she can no longer do on her own. 

It forces air into and out of the lungs which loosens anything that might be in there. I’ve been told it feels very unnatural. 

After using the cough assist we suction Tori well and then give her two puffs of albuterol. This is done at least once a day, and if she ever gets sick it will be done every four hours around the clock.

Feeding Pump:

    
  

This is the single most important piece of equipment in our home because it is how Tori has been fed for nearly a year now, through her g-tube.

We are able to adjust the speed of the feed as needed (last summer, for example, we slowed it down to feed her over an hour instead of thirty minutes), and it makes feeding her very simple.

All of the feeding bags (three per day) and other supplies are delivered to our house every two weeks.

Pulse Oximeter:

  

This machine monitors the oxygen levels in her blood as well as her pulse. 

Stander:
  

  
The stander is an amazing invention! 

You can read about the benefits here.

The goal is to get Tori in her stander for at least one hour per day, with the ideal being two one-hour sessions per day.

Suction machines:  
  

 

We have two suction machines for Tori – portable (top photo) and stationary (bottom photo).

These two are vitally important as Tori began to lose her swallowing ability in June 2015. This allows us to remove secretions from her mouth to prevent aspirations.

Oxygen Concentrator: 

   

The concentrator pulls air into the machine and somehow keeps only the oxygen, which then flows through the tubing and into Tori’s nose. 

The top part of the machine is a “home fill” machine which allows us to fill her oxygen tanks on our own. 

We keep the large concentrator in our bedroom and have 25 feet of tubing to move Tori around the house without having to move the machine.

“Shaky Vest”

  

We haven’t been able to use this yet, but it is another tool to help Tori’s lungs remain clear and healthy.

Tori’s vest was ordered months ago by her pulmonologist, but we have yet to receive it. Thanks to Tori’s buddy, Parker, and his parents (and thanks to Hunter’s Hope for helping get it to us), we now have one to use until hers comes in. 

The vest vibrates and gently “shakes” the baby in order to break up anything that might be in the lungs.

The other Krabbe parents report that their babies love the vest treatments, so we can’t wait to see what Tori thinks.

Adaptive Stroller:

  

You can read about her stroller here.

We are thankful for each of these pieces of equipment, even though they take up a lot of room in our house. 😉 We are even more thankful that our insurance paid for all of these without questioning anything and that we received her equipment fairly quickly. That is rare and we don’t take anything for granted.

Now you have a little insight into the technology and equipment that we use to help Tori feel as great as we can ❤️

Tori’s Bucket List: Build a Snowman

We had to wait much longer than we had anticipated to finish this adventure because we didn’t get any snow until this weekend!

The neat thing about this is that Tori first experienced snow on January 24, 2015. Now she got to see it again on January 24, 2016!

Harrisburg was “blessed” with around 30 inches of snow in less than 24 hours and we are still digging out.

The snow wasn’t good snowman snow, but Brennan did a great job of building one for us to decorate!

Tori doesn’t love the snow – but neither do her parents 😉

Thanks to Zander, one of her Krabbe buddies, for the snowsuit! And thanks to our dear friend, Karen, for the snowman decorating kit!

 

 

The Playroom

Her toys sit where they were first placed one year ago, nearly untouched and gathering layers of dust.

The special place in the basement that we created for her playtime, learning, and general enjoyment has yet to be used by Tori.

One year ago, as we began an unwanted journey toward an unknown future, we pressed on and continued to put together her playroom. 

Amidst the appointments, tests, starting her on solid foods in a desperate attempt to stop the reflux, and fears of what was wrong, we continued.

The day of her reflux diagnosis was the day I had already planned to drive to Baltimore with a friend to go shopping at IKEA for her playroom. 

As she cried and cried – the entire way there and back – and as I pondered the accuracy of the diagnosis, a determination built up inside to finish her playroom.

After the devastating CT scan (that showed “brain abnormalities”), I remember Brennan holding her on the couch in the basement while I labored away to assemble the cubed shelves and the playmat. 

I felt increasingly desperate to complete it as each piece of bad news was delivered.

We assembled the IKEA furniture to store her plentiful toys, and we pieced together the colorful floor mat that would provide a more comfortable place for her to play while also teaching her letters, numbers, and colors. I assembled toys and put batteries in when required. I organized and arranged her toys and stuffed animals in colorful Thirty-One bins. 

As long as I was working on the room I felt hopeful, I felt like everything would be okay.

  
Once her official diagnosis and prognosis were received, I stopped working on her playroom for weeks.

I think it was a combination of grief and of learning about feeding tubes and other new medical realities in our lives. The room became a non-priority.

Once we decided to choose joy and hope, I finished her room. Her playroom represented hope; it demonstrated trust that God still works miracles today and that He could absolutely heal her. 

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Tori’s mostly finished playroom

I wanted the room to be finished just in case God decided to heal her here on earth. It was an act of faith, in a way.

She still hasn’t been able to play with most of her toys or to enjoy her playroom, but lately other children have while their parents visit with us or while we host Bible study meetings for church. I love hearing their laughter and seeing their smiles while they play with Tori’s toys. 

We continue to pray for her healing with every breath, and we continue to thank God for giving Tori to us, even if just for a little while. 

The playroom was intended for joy, and it has brought indeed that, though in a way we never would have expected. 

And, maybe someday Tori will be playing along with those girls, making a mess (that I long to clean up) and being loud (a sound I would do just about anything to hear). Maybe someday.

Tori Update

Besides the fact that today marks one year since Tori last smiled, there is a great deal for which we are thankful.

Tori has been doing amazingly well since we corrected her sodium levels.

Her breathing has been perfect for a couple of weeks (no apneas!) and we are beginning a trial wean of her oxygen flow to see how she does. Already today, after dropping from 3/4L to 1/2L, she has kept her O2 sats above 95! On her own!

She has been feisty and has gone back to not sleeping, which is not fun, but it is encouraging. 😄

She can hold her head up for a minute at a time. By herself. We assume that can be attributed to her not being on baclofen anymore (about two months now).

She is nice and relaxed, not tense, constantly now.

She is alert and focused.

She has been more talkative than she has in weeks, if not months.

We are incredibly encouraged by how well she is doing. We don’t take anything for granted and we know it can change at any time. 

We don’t know why God continues to allow Tori to do well and to still be with us, but we are unbelievably thankful that He does.

Here are some recent photos of her – mostly of her not sleeping 😉❤️

Thank you for continuing to pray for our Tori! ❤️

    
    
    
   

Sensitivity and Personal Responsibility 

Someone recently asked me a question that I thought was worthy of an entire blog post because it is something that needs to be addressed in our culture.

I was asked how it makes me feel – given our circumstances with Tori – when friends post about their healthy, typically-developing children.

I paused before answering, but it wasn’t a new concept to me. It is something I have thought about almost daily since Krabbe began to appear in Tori. I just wanted to make sure I was clear in my response.

I pray that you will read this with an open heart and mind and not immediately be offended.

I am human, and there are days when I feel more sensitive about it than others. 

There are days when it can be challenging to see posts from friends who don’t have to face the things we do, friends who don’t have to consider their genetics when making decisions about expanding their families, friends whose children aren’t dying.

I think if I didn’t feel a little sensitive to this it would indicate a deeper issue within myself – after all, what special needs parent wouldn’t see a healthy, typically developing child and not want that for their own child?

If I am honest,  it is even difficult some days when I see photos and posts of other Krabbe children who can still do things that Tori can no longer do. 

All of these things are reminders that I am losing my child and there is nothing I can do about it.

However, if these people are truly my friends, why wouldn’t I celebrate with them? 

Why wouldn’t I be genuinely happy that their children are happy and healthy, that they have such a bright future and are learning new skills daily?

If Tori were still able to do those things, if Tori were still healthy and growing, I would hope that they could celebrate with us.

Our culture has become far too hypersensitive and it has reached a ridiculous point. It has to stop. It is a choice to be offended.

Why can’t we celebrate others’ successes even if we aren’t currently experiencing the same success?

Whatever happened to personal responsibility for our own emotions, actions, and everything else?

I cannot stand how easily offended people have become and how they expect the “offender” to take sometimes drastic measures to ensure that they don’t “offend” ever again. (This isn’t my first post about this topic – see another here.)

I would NEVER put the burden on others to make them feel bad about the fact that their kids are healthy and typically developing. That is selfish and cruel, and I believe it is also sinful.

On those days when I am grieving, I choose to take responsibility for my sensitivity. I may need to ignore Facebook posts occasionally or hide the friend from my News Feed for a while, or even stay off of social media for a while, but my friends don’t need to know that.

It is MY responsibility to deal with my own emotions and not steal another’s joy with my selfishness and jealousy. 

What good does it do to make others feel badly that they have what I so desperately want?

If I want people to put themselves in my shoes, I need to do the same for them. And that includes being able to celebrate with them when things are going well and take personal responsibility for my own emotions on the tough days.

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To our friends who are parents – we are genuinely  thrilled for you and your growing families. We are so thankful that  you don’t have to endure the trials that Brennan and I are enduring! 

I may not comment on every post or photo, but I do share your joy most days, in my own quiet way. ❤️ 

Please take joy in your precious children! Don’t let anyone steal that joy from you.

Thank you for your love and support of our family throughout the past year – it means more than you know.