“…where everybody knows your name…”

When I go to the dentist I do not expect them to remember my name or who I am – after all, I am only there twice a year for less than an hour.

However, today I struggle to find words to express how my visit to the dentist made me feel.

The visit started as usual and the hygienist was making casual conversation with me. She then said, “I don’t want to make you cry, but how is your daughter doing?”

I stared at her blankly for a brief moment, trying to figure out how she could possibly know about Tori and how she could have made the connection that I am her mother.

Before I could say anything she added, “One of the ladies in the office saw the article about your family in the paper and made sure that we all saw it.”

I told her that Tori is doing fairly well and that I was amazed that she remembered the article (it was two months ago).

I felt something I can’t quite describe at that moment. 

My dentist’s office (which is quite large and sees hundreds of people each year) remembered our names well enough to recognize them when they read them in an article two months ago. 

Brackbill is a common last name in Central Pennsylvania, so it wasn’t the uniqueness of the name that enabled easy recognition. They remembered us for who we are. And, they remembered me today and asked about Tori.

We have always had great experiences with this dental office, but today made me certain that this is where we should be going – they clearly care about their patients and take the time to know our names. And that seemingly little thing meant so much to me today.

#ToriTuesday Update

It has been an exciting day for Tori! Haha. She had her opthalmology follow-up this morning in Hershey and then the E.I. nutritionist came to weigh and measure her.

First, opthalmology:

   
Waiting for her eyes to fully dilate…

    

Once her eyes were dilated the doctor was able to evaluate the anatomy of her eye, which all looks great! Her eyes are a little dry so she gave us some OTC suggestions to try. 

    

Tori did a great job in the car both to and from Hershey! So thankful. ❤️

  
We came home, ate our lunch, and then waited to be weighed and measured. This was the first check-up since we increased the volume of her feeds.

At 9.5 months, Tori is now 13lbs 13oz and 25 inches long! She is gaining weight at a great rate!

At this time next week we will be on our way to Pittsburgh for a quick evaluation with Dr. Escolar. We haven’t seen any progression of the disease (that we know of), so we are feeling hopeful that God is working.

To recap since our last post…

Tori’s blood draw (genetic testing) and g-tube replacement both went really well!

We made progress during physical therapy last week with the stroller, and we were supposed to try the pool yesterday but thunderstorms cancelled those plans.

Here are some pictures from the last week!

   
  

               

   

  

  

Our friend Shannon took some photos for us and we will be sharing more soon.

  

  

  

  

What Will (Likely) Never Be…

Most days, Brennan and I do well with our reality regarding Tori. I’m not a very emotional woman normally, so it has been fairly easy in the past couple of months to adjust to our new normal and get through daily life with Tori, even if we’re numb some days.

Since we are around Tori far more than we are around other babies, it also makes it fairly easy to forget that she is so sick. She is our “normal” and we forget that she really isn’t.

We don’t focus on what she can’t do; instead, we celebrate every positive thing, every little thing she is able to do, and we cherish each and every moment that God gives us with her. God gave Tori to us and we will love her with all that we are and all that we have until He takes her home to be with Him. We have made a conscious decision to not be miserable, but instead to make the most out of this situation, whatever the future may hold. 

However, there are times when we are reminded that she is anything but “normal” and those moments are sometimes difficult.

We have a few local friends with babies who are within a month of Tori’s age, and it is when we see them that we are reminded. I want to make it clear that we do NOT resent those friends or feel sorry for ourselves when we are with them (nor do we want anyone to feel sorry for us) – instead, we choose to celebrate with those friends because babies/children are a blessing and a joy and their milestones should be celebrated and remembered. We don’t wish our situation on ANYONE.

But, it is in those moments that we are reminded not only of all that Tori can’t currently do, but also the fact that, without a miracle, she will never do what those babies are doing. 

It is an odd feeling to be simultaneously excited for others but also deeply hurting for your own situation.

Then the pain returns…an indescribable feeling of painful desperation, willing with everything within me for the situation to change and for everything to be fine. For Tori to be crawling, getting into everything, teething, learning. For Tori to grow and become a beautiful woman. For me to be able to be not only a mother, but Tori’s mother. Forever.

Then I think about the fact that I may never be pregnant again. I think about how desperately I wanted to be pregnant with Tori for those TWO YEARS of trying…how elated we were to finally conceive…how much I loved the experience of being pregnant…and now those feelings are sharply contrasted with the fear and grief of knowing that getting pregnant again is a huge risk…of being unsure that we even want to have (or obtain) any more children if we lose Tori.

In those moments, I cry out to the Lord for mercy, for peace that surpasses understanding, for clear direction and wisdom, for a miracle that can only be attributed to HIM.

Those moments awaken my emotions for Tori, Krabbe, and her future, and I am reminded of the severity of our situation and of our helplessness without the Lord. It is hard to describe the hurt, but it is something that I physically feel in those moments.

We don’t hide from the pain – hiding doesn’t bring healing (for ourselves or for Tori). Thankfully, we do well most days and these moments of pain and mourning are infrequent for the time being. And we don’t seclude ourselves from our friends and their children. Instead, we choose to love those children and be excited as we watch them grow and develop normally. Just because our baby is sick doesn’t mean that we should be bitter and angry about healthy children. 

It’s best to just focus on today, to focus on how well Tori is doing despite her circumstances. Thinking about the future only brings pain that isn’t meant for today. If Jesus takes her home, we will certainly grieve then, but we will also rejoice because she won’t be suffering any longer. We will rejoice that her little life has impacted so many, including our own. And most of all, we will rejoice because she is made perfect in Heaven and will be there to meet us someday.

Dreams, Part Two

We are fascinated by the dreams people continue to have of Tori being healed. You can see the first post about dreams here.

While we cannot be certain that these dreams are prophetic, it gives us hope because we know that God speaks to people through dreams and visions! It is amazing how many vivid and detailed dreams have been had by so many.

Here are three more:

I had a dream last night that I went to a children’s boutique and Lesa was helping people. There was a series of children’s books about Tori. I introduced myself and then, from behind the counter, Tori came out running around and playing. I was so excited!

I had a dream about Tori last night…Tori smiled, she smiled so big. Her eyes just lit up and she smiled. It was beautiful.

…last night was the most vivid dream I had of your daughter.
In my dream Tori started smiling and began to regain her motor skills. You took her to the doctor and they ran several tests because she appeared normal. They couldn’t figure out the miraculous recovery.

Shortly after that she began crawling around and there was a child’s art easel in a room. This was so vivid because I even recall what she was wearing (white short sleeve shirt and raspberry color knit pants with a headband in her hair). 


She crawled to the easel and pulled herself up on it. You gave her some finger paint and she happily splattered paint on the easel. She giggled and smiled the entire time. 


I remember saying that this little girl is such a testimony and miracle. I had to share this because it really touched me. 

#ToriTuesday Update

I am going to try to post an update on Tori each Tuesday from now on. #ToriTuesday 😄

Overall, Tori is doing really well. 

We decided to try using doTERRA essential oils in our home and on Tori to see if they would help her (and us) at all. It is so hard to know if they are making her feel better, but I am hoping it will reduce any discomfort she may be experiencing. We diffuse different oils throughout the day and also use a couple of them on her feet (diluted, of course).

 

We put her on a feeding schedule last week (set times instead of going by when she wakes up), partly so that we can reduce the frequency of the feedings by increasing the quantity. 

We have slowly been increasing her feeds to 125mL (4oz) and she has tolerated it so well! This means we can drop down to five feeds a day, four hours apart.

Mother’s Day was relaxing and enjoyable. We went to church and then spent the rest of the day at home.

Here are some photos from the weekend:

   
                  

We bought a Fisher Price Rock ‘n’ Play to see if Tori would sleep well in it since it is a set-up much like the bathtub that she loves. She will sleep in it and hang out in it, but she isn’t sleeping in it very long. She somehow knows Mama isn’t right there 😉❤️

   
 Tori had vision therapy today and we found out that she enjoys shiny, reflective things. The therapist brought a silver platter from the Dollar Tree and put some green leaf-shaped lights on it. Tori loves it! When we took it down to try something new, she got fussy; we put it back up and she stopped.   

             

Tori is very good at communicating to us when she likes something. It started with the giraffe that lights up – when that light goes out (after 5 minutes), she starts whimpering. I turn it back on and she stops. Just like today with those green lights – she knows what she likes! 

Brennan’s sister (Kelly) works with someone who offered to sew buttonholes in Tori’s onesies so that we could use them on her, and she did a great job! My mom and grandma had the same idea in April but we ran out of time to do it during that trip. Now her feeding tube can be easily accessed!  

Tomorrow is a big day: a phlebotomist from the genetics lab is coming to our house to do the blood draw for Tori’s genetic testing; we have to take her to Hershey Medical Center for her follow-up appointment with pediatric surgery and to learn how to change her g-tube (which will happen every 3-4 months); she will then have physical therapy in the afternoon.

She may go “swimming” for the first time on Monday, so that will be fun!

We are so thankful that she is doing so well. God is good, all the time.

Maintaining Normalcy…

Now that we are nearly three months post-diagnosis, we are attempting to resume a “normal life” – living just like we would if she were healthy. We want to still give her experiences that stimulate her senses and we want her to travel with us.

Before she was born, and even before she got sick, we took her out quite often. Because I was breastfeeding, all we needed were a few burp cloths and a diaper bag. Easy.

However, traveling with a child like Tori is very different now and can even be challenging (especially by yourself) due to the amount of equipment and supplies she requires, and she isn’t even on oxygen yet! 

Here is a glimpse of just some of what we have to bring with us if we are leaving the house for more than a couple of hours:

  Tori requires 20-24 oz of breastmilk a day (must be kept refrigerated or frozen). We also have to add MCT oil to the milk to help her absorb fat (related to Krabbe). 

We have to bring 3-4 feeding bags per day that we will be gone (we had to take 32 for our California trip). We have to bring her pump and two different syringes (one for venting and one for flushing her tube).

 We also have to bring her meds (which must be refrigerated), med syringes, an extra g-tube and extension, and the g-tube pads.

This is all in addition to normal baby supplies! 

I don’t say any of this to invoke pity. It is what it is, and I know that we still have it fairly easy for now.

But, I point this out to make a suggestion: if you are getting together with someone who has a medically fragile child, ask if you can travel to them instead of having them go to you. At least suggest it. It may be a relief to them!

If they are like us, we are more than willing to open our home to those who would like to visit – especially because Tori is still not loving the car. Then, we have everything handy and we don’t have to stress about packing everything and not forgetting anything.

Now that she is doing pretty well we are trying to do more outside our home with her, including relief houseparenting at MHS one weekend each month again, but we are still overwhelmed when it comes to packing all of her supplies and figuring out the logistics. It is a lot, but we are getting better with each trip.

This is our new normal, but we will continue to try to live like we used to and travel as much as possible in order to give Tori some awesome sensory experiences. We are a family and will do things as a family as long as possible.

Tori Update

For those who are not on Facebook, I apologize for not updating the blog lately with Tori’s progress. Here is an update with pictures!

As of yesterday, Tori is 13.5 pounds and 24.25 inches long! She is growing! She is now nine months old. Some of her 6 month clothing is finally starting to be a little snug on her (especially with her cloth diapers). So glad that she is growing!

We attempted a walk in the stroller last week…she wasn’t impressed.  

Physical and vision therapies are going well and she seems to enjoy the stimulation. She did NOT like the egg (picture below) that Ms. Diane tried to put in her hand 😉
  

She is MUCH more comfortable in her pillow now and spends many hours a day lounging there.

  We are in the process of regulating her feeding schedule a little more in an effort to reduce the frequency of the feedings. 

What does this look like? Currently, she eats 105mL (a little over 3oz) six times a day, 3-3.5 hours apart (except at night); the goal is to gradually get her up to five 125mL (4oz) feeds, four hours apart, and to have those feedings on an actual schedule. Right now we just feed her whenever we wake up and go from there.

In reality, the success of the schedule relies on my ability to get up by 6:30am to start the first feed and has nothing to do with Tori. If I can start doing this daily, the last feed will be at 10:30pm, which will allow us to be in bed a little after 11pm.

  
   

I rely on the alarms on my phone for her medication schedule and now for her feeding schedule. So thankful for that function on my phone! 😄 

It will be SO nice to have some sort of a schedule finally. This will allow me to do things for myself before Brennan leaves for work (shower, eat, drink coffee, read my Bible) before starting my day with Tori.

Overall, she is doing well. She seems to be stable and we haven’t seen any progression of the disease lately. So thankful for that! We have adjusted to all that her care requires and feel fairly comfortable with it all.

We have also decided to try some Essential Oils with her to try to reduce her nerve pain. I am skeptical but willing to be proved wrong about their effectiveness 😉

Here are a few pictures from the past week or so 😄❤️