How We Cut Our Cellular Costs in HALF

Like many people, Brennan and I have recently been trying to figure out where we could cut costs in our budget. There weren’t many obvious possibilities, but we saw a commercial that brought us hope.

We have Comcast internet at home, so when we saw a commercial for Xfinity Mobile we were intrigued. It sounded too good to be true, but it has turned out to be everything it promises.

  • You only pay for the data you use – $12 per GB, or unlimited for $45. This gives you complete control over your bill!
  • You can switch back and forth between unlimited and pay by the gig, even mid month! This means you’re always getting the best deal.
  • Xfinity uses Verizon’s network so we have the same cellular coverage that we did with AT&T.
  • You are automatically connected to Xfinity WiFi hotspots whenever they exist, which is frequent! This means you use less data.

Our first bill with Xfinity will be HALF of what we were paying with AT&T. That’s a savings of $100!

The added benefit has been increased quality time: we’ve been trying to not use our phones at all when WiFi doesn’t exist, so we’ve had more quality time together while we’re away from home.

It’s so easy (especially as an introvert) to just pick up your phone and browse the internet instead of engaging with people; but, because we decided that we will try to use as little data as possible each month and made it a game, it’s also increasing our quality time with others.

It was hard to leave AT&T after fifteen years as a satisfied customer, but so far Xfinity is proving to be a much better way to do mobile and it’s saving us a significant amount of money each month.

This isn’t a paid endorsement, but I’d encourage you to look into services like this if you’re interested! It’s worth the switch.

Our IVF Journey: The Results

As I type this, I am halfway through the first trimester already – so, our IVF was successful! However, it didn’t go as we had anticipated.

On September 1, we drove to Towson, MD for the transfer. The entire process lasted about ten minutes but the transfer itself was about one second! We were given a picture of our two precious embryos as they were hatching from their shells.

Right before the embryo transfer – #4 is the boy and #6 is the girl

We put in two embryos because we really wanted twins, but we also did it just in case only one made it. Financially it was necessary because this transfer was already paid for but subsequent ones will cost around $4,000 each. We needed this one to work.

The transfer was quick but the waiting was long.  Thankfully we were both distracted by the happenings in our lives and didn’t have much time to wonder if I was pregnant. The pregnancy test wasn’t until September 14, but while I was visiting family in California I took a test and it was positive. It was a super faint line, but there was a line!

On September 14, I had blood drawn and received the call that afternoon that I was indeed pregnant and that my HCG numbers were great – 971! They said it was too early to know if there were twins in there based on the number. More blood was drawn a few days later and my HCG was close to 6,000.

We had our first ultrasound on September 25 – also Brennan’s birthday. At first we were only seeing one baby and our hearts fell. The technician then said, “you’re having identical twins!”

Six Weeks

To say that news was shocking is an understatement, as it’s actually quite rare – even in IVF – for embryos to split. We’re talking less than 2% chance. We were both shocked and saddened at the same time because this means that we lost an embryo.

The funniest part of all of this is that we now have no idea what we’re having! We knew when we put in the boy and the girl…but now we don’t know which embryo split! God has such a sense of humor! We will be happy no matter what we’re having, but we’re hoping these are boys simply because it’s our only shot at boys – our remaining frozen embryo is a girl.

Seven Weeks

Both babies have strong heartbeats (141 at the seven week ultrasound) and are growing right on schedule. I feel fine and have no pregnancy symptoms aside from being a little more tired. My pregnancy with Tori was easy with no morning sickness so I’m praying for the same with the twins!

I have 1-2 more weeks of being seen at Shady Grove Fertility before I transfer to my doctor in Hershey. I cannot recommend Shady Grove highly enough – they are the best at what they do and have been so good to us!

It has been quite the adventure. It hasn’t always been easy and I’m growing weary of the nightly progesterone shots (and the side effects that brings). But, it’s beyond worth it to know that I’m carrying precious Krabbe-free twins (they aren’t even carriers!)!

Thank you all for continuing to pray for us and support us. Please keep praying for the twins – specifically that they are in their own sacs – and for an uneventful and full-term pregnancy. My goal is to carry them until at least 36 weeks, and preferably beyond that. ❤

God is so good and we are so thankful that He has made this possible.

Pregnancy and Parenting After Loss

I’ve mentioned before that ever since Tori went to Heaven I’ve felt quiet, as though I have nothing to say. And so I’ve stayed quiet, not wanting to force the words just for the sake of writing.

Well, I finally feel as though I have something about which I can write.

Pregnancy and Parenting After Loss.

As the date for our embryo transfer draws nearer, I have so many thoughts and feelings running through my mind and heart. We will be pregnant soon! I honestly feel like I’m already “nesting” even though I’m not even pregnant yet. Brennan can attest to this, haha. Granted, that’s partially because we still haven’t really moved into our house yet and I’m ready to be SETTLED. But I digress. My heart longs to be pregnant, to have the hope of future children.

I just want to be a mother again, to hold and care for these precious babies who are currently frozen. 

But there’s a lingering fear that I can’t quite chase away – a fear that one or even both of the embryos won’t attach. That I will miscarry. That we will have two or three children in Heaven and not just one. There’s little reason to think this will happen, says my doctor. I’m healthy, fertile, and have no reason to believe that the embryos won’t attach. We’ve seen how God has moved mountains to make this even possible. So why are these fears so present?

I have a feeling that parenting any child after losing Tori is going to be a greater blessing than we can imagine and yet contain the potential for greater fear than we’ve ever had before. Any symptom that reminds me of Krabbe. If they have reflux like we thought Tori did. If they have any developmental delays. Anything like that will have the potential to throw me back into the pre-diagnosis days with Tori, wondering if the genetic testing was wrong. Wondering if they do have Krabbe. I have a feeling this will be a challenge to overcome.

I’m not one to be fearful, really ever. I trust the Lord and I believe that He has me in His hands. I believe that He is in control and that He knows exactly what will become of these precious frozen embryos. So I must surrender, moment by moment, any fear or doubts that creep into my mind, because I know that they aren’t from Him. 

I will continue to process my thoughts and emotions about all of this as we progress though pregnancy and parenthood after losing Tori. I pray that my transparency is a blessing to others and that the Lord will continue to work in and through our lives.

Please pray for our embryos – our son and our daughter: pray that they will survive the thaw, that they will attach to my uterus quickly, and that they will develop into healthy, thriving babies. September 1 is quickly approaching! 

 

So, We Missed a Wedding Today

We left our friends' house in the Lynchburg, VA area for Raleigh around 10:30am today to attend our friend Breanna's wedding. We allowed for plenty of time to get there and were enjoying the beautiful day.

We stopped along the way at a CVS to get a few things; I came out of the store, put the key in the ignition and I couldn't even turn the key. It was bizarre.

Brennan tried, I tried, and finally, after replacing the battery in the key fob, we called AAA. By this time it was noon, and the wedding was just two hours away (and so were we). They said it would take ninety minutes or so for a tow truck to get to us.

We were going to miss the wedding.

After a few minutes of being grumpy and frustrated, we decided to make the most of our day. It was a great temperature, not a cloud in the sky, and we happened to have camping chairs in the van!

We got some strange looks from people, understandably, but whatever. 😄 We were comfortable and having fun.

A kind woman with four children (including a four week old baby) asked if we needed any help and offered her jumper cables – too bad our battery was SO dead that it didn't work. Still, her kindness was so appreciated! She was the only person to offer assistance.

When the tow truck arrived (just as the last of our shade was disappearing) we realized that there weren't any open repair shops around! Thankfully we found one and they were able to fit us in.

The van was done by 4pm, so we missed the wedding entirely. While we aren't happy about this, today was another reminder that we have a choice to make every situation joyful or miserable.

We had a good day despite the disappointing outcome of missing the wedding. We chose to look for the positive and found a lot of things for which we could be grateful! ❤️

  1. It was breezy and nice.
  2. We had chairs in which to sit.
  3. We had access to a restroom!
  4. We had a AAA membership.
  5. We had water and food.
  6. We had an opportunity for quality time.
  7. We made memories together.
  8. The repair was not expensive!

Remember in moments like this that it's going to be okay, that someday you will look back and laugh, and that there's always something for which you can be grateful. ❤️

Hunter’s Hope Symposium 2017 – Day Two

Today we heard updates from several hospitals that are working toward becoming Leukodystrophy Centers of Excellence in order to better care for these children and their complex needs, and we also heard research updates.

I'm going to jump right to the research updates because this was incredibly exciting.

First, we were told that Dr. Escolar has a paper that will be published the first week of September (a week AFTER the next NBS Advisory Panel meeting in PA) and this paper could very well get Krabbe onto the federal RUSP because it answers questions that previously weren't as clear. Why does the RUSP matter? Many states will only screen for diseases that are added to the Federal RUSP; once Krabbe is added, many states will automatically test for it!

As you probably remember, one of the things we (and many other families) have been told as we advocate is that they need published data. We've all been waiting and waiting for something to be published to help our case for adding Krabbe and this will apparently be it!

Second, and THE most exciting part: they are so close to a cure for Krabbe. The doctors didn't say it like that but it was apparent that is what they meant. Dr. Escolar and others have been treating twitcher mice with Krabbe successfully using the bone marrow transplant AND gene therapy together and the outcomes have been unbelievable!

This chart shows the life span of mice who were untreated, treated with bone marrow transplant only, and a combination of the two. The combination therapy is the top blue line. The mice who had the combination therapy in 2015 are STILL LIVING and show no signs of the disease!

The FDA has approved the idea but it won't go to clinical trial for 3-5 years unfortunately. In the meantime, our hearts are so hopeful because this is incredible news.

Thirdly, they discussed the improvement in the NBS test itself and the near-elimination of false positives using two factors and not just one (low GAL-C activity and high psychosine levels) and by using a computer algorithm to sort the data that has proven to accurately predict the form of the disease (early or late onset).

I tried to simplify all of this the best I could. To sum it up, research has made leaps and bounds in just the last two years and they are closer to a cure than ever before!

Dr. Kurtzberg from Duke also reported on the success they are seeing in stem-cell treatments of Cerebral Palsy and Autism. Stem cells from cord blood are incredible tools and doctors are doing amazing things with them.

Hunter's Hope does such an amazing job of not only funding research but also coordinating the dialogue and cooperation between scientists who are all working toward the same end. If you would like to support them, you can click here! Our goal is to raise $3,000 for them before Friday's walk!

Hunter’s Hope Symposium 2017 – Day One

Symposium time is here!

It's the one time each year we are surrounded by people from all over the world who understand exactly what we have been through. It's the week where we can let our guard down and enjoy these precious moments with our Leukodystrophy family knowing that we fit in here, that we are "normal" here.

None of us would have chosen to be in this position, to be in this "family" of such suffering and grief, but we cherish the relationships and the joy that have come out of everything we have endured.

If grief and pain were measurable, the weight of it just from these precious families here would be astronomical in size; every family here has lost – or will lose – a beloved child (or two), something which has been called the most painful thing a human can endure; and yet, all we see are smiles, joy, friendships, authenticity, and an appreciation for each and every moment. We see hope. And it's amazing.

This is our third year at the Symposium and it's the first one I have been slightly hesitant to attend, for reasons I am still deciphering.

Perhaps it's this: Tori was with us for the first one and she was cherished by all; last year she had gone to Heaven a mere four months earlier and everyone remembered her; will she be remembered this year?

Perhaps this: we now seem to fall into the category of parents who lost their children "a while ago" and it's strange. It's a different feeling being here now, a year after she went to Heaven…not a bad feeling, of course, just different.

I watch the parents with their living children and am amazed at how distant that feels. The suction machines, the feeding pumps – sounds so familiar and yet such a distant memory because I haven't heard them or thought about them in a year. Something that was once part of my daily life now feels like a lifetime away.

I'm not caring for Tori constantly now, and I'm not necessarily grieving anymore (though it will never fully be over), so it's a strange place to be. It's just Brennan and me now.

Perhaps it's strange to be here because it's a time when we're forced to remember that this was our life for fourteen months, and that we did lose our precious daughter. In daily life it's easier to move on because of distractions and tasks. Even though we talk about Tori daily and think of her all the time, it's different somehow to be here surrounded by other families going through the same thing we did.

Despite my emotions through which I am sorting (thanks for letting me process above), I am so happy that we are able to be here again. We're praying that next year we will have a new baby with us ❤️

As always, I will blog about the new research findings and everything else we learn throughout the week. So thankful for Hunter's Hope and all that they do to support Leukodystrophy families.

It's going to be a great week!

Even So…

The common theme of the past six months has been hurdles. Things haven’t been going as smoothly as we would like and we’ve come up against some significant challenges.

  • Buying this house came with one obstacle after another and cost more than we anticipated not only to buy it, but to do the necessary renovations (that still aren’t done because we ran out of money). It seems like all of our Dave Ramsey progress was lost and we’re having to start over again in our process to becoming debt-free.
  • We drained our savings (and our HSA) to pay for IVF (though MUCH of the cost was donated by generous and amazing people and we are SO very grateful!), and it’s tough to rebuild it.
  • We started an AirBnB in the apartment upstairs and have LOVED running it. It has brought joy to us and to the families and single mothers we have been able to serve and bless through this venture. It has also been hugely beneficial financially. 

    However, two of our neighbors are “uncomfortable” with the idea for ridiculous reasons (they don’t understand AirBnB at all, essentially) and they filed complaints with the township. We were forced to make a decision to either pay $450 and wait three months (and go to two zoning board hearings) to try to be rezoned for this type of use (no guarantee of approval), or give up and just get a tenant (less income, loss of the opportunity to help others enjoy Hershey and run an AirBnB; loss of space to host family and friends and bands (through RYFO.org) upstairs).

    Ultimately, we’ve decided to try to find a tenant because some battles aren’t worth fighting. The township needs to modify their rules about AirBnB instead of trying to make it fit into other molds and making it impossible for residents to do. I am proud of my letter to the township supervisors and hope that it will make a difference in the future for property owners to use their property as they choose.

  • I haven’t had much time to finish my book proposal or to find an agent, even though my manuscript has been complete (and edited) for six months. I’m struggling to remain positive about it being published, even though I believe that the Lord led me to write it for that purpose.
  • I am committed to do many good things, but finding a balance and remaining disciplined has been a challenge.

Even so, it is well with our souls.

It hasn’ t been ALL bad, but the hard things in life tend to overshadow the good; when we focus on the positive we realize that we have had some GREAT things happen:

  • We thoroughly enjoyed our trip to California, Oregon, Washington, and ALASKA in June and returned home feeling rejuvenated even though the trip was exhausting. Seeing the beauty of God’s creation and spending treasured time with family was worth every lost minute of sleep.
  • We found out that we have THREE embryos (out of the five) that are healthy! Two are not even carriers of Krabbe! The fourth embryo needs to be retested, and the fifth has chromosomal abnormalities that are not survivable. We are thankful for these 3-4 and will hopefully do the first transfer in August.
  • Thanks to my dad spending two weeks out here, we’ve nearly completed the basement projects (laundry room/bathroom drywall and paint, etc.). We’re going to be ready for hosting bands and other guests so soon! Since we’re giving up the AirBnB this space will allow us to continue to minister to bands through RYFO – an amazing network of host homes for touring musicians.
  • Brennan and I are trying to become much more disciplined than we are currently in every area of our lives. It’s a struggle but we must overcome and become self-disciplined.

Through it all, my heart has remained at peace because I trust the Lord completely and I have absolute faith that this is all happening for a reason. As the popular song states, “Let go my soul and trust in Him, the waves and wind still know His name…” He is still on the throne, He is still in charge, and, most importantly, He still LOVES us. In those moments when I feel worry start to encroach on my peace, I stop and pray and remind myself that He’s got this.

And so we press on, knowing that it will all turn out alright.