It’s been some time since our last update. The last few months have been kind of a blur. We had Halloween, Hannah’s birthday, Thanksgiving, a short hospitalization for Hannah for an illness, Christmas, and Hannah lost her first tooth on New Year's Day! The weather thwarted some, but not all, of our Christmas plans with family. We had been very focused on our vacation in January, which we had been planning since I started my treatment. That vacation was something that I was looking forward to so much. It was going to be a marker for me that I had made it through. On my hardest days, I imagined us there, having fun together as a family. I was looking forward to a time of fun, warmth, and being outside. We had been pumping the kids up for it. 

Unfortunately, the weather got in our way. There were some other factors, too, but the weather was the nail in the coffin. We had decided to delay the trip by a couple of days to see if we could avoid the storm. We got packed up and hit the road. Then we headed right for a snow squall. My anxiety couldn’t handle the idea of fighting the weather the whole way down, and by that point, we had basically missed our window to go. I was heartbroken. It was just a vacation, but it was more than that to me. It was a victory that I desperately needed, and I was mad and sad that I didn’t get it. 

The reality is that everything has felt quite heavy lately. My anxiety is high, but not in the way that you might imagine. It’s more like paralysis or avoidance or inflexibility. I’m okay as long as everything goes according to plan, but when something changes, my brain just perceives threat and says “abort.” (It normally takes me time to adjust to changes, but I can get there. Now, it seems that I can't.) I can tell that my body is holding on to the trauma of the past year. I can’t tolerate much and react strongly. The darkness of winter and the cold weather don’t help. Simple tasks seem overwhelming. When I was trying to pack for our trip, I was so frustrated that I couldn’t organize things. I just stared at everything but couldn’t figure out what to do with it. I was getting so mad at myself until I looked it up and found that this kind of difficulty with executive functioning is a side effect of my treatment. My brain is literally different now. I’ve never dealt with change very well, and I’ve undergone a big one this year. While I faced one of my biggest fears, I also know that I’ll never really be the same again. This is hard for me. I can’t just snap out of it, reason my way out of it, or spiritualize it. It’s a different kind of change.

Speaking of big changes, we have a lot on the horizon, particularly with regard to Hannah. The first is that we finally got off the waitlist for ABA therapy. We spent over two years waiting to get evaluated, then we’ve been calling nonstop since August to get set up with any agency with openings. Finally, we have. This will be a huge change for our whole family, as this therapist will be with Hannah at home, at school, and in the community for up to 25 hours per week. We are really hoping that this person will be a good fit for us. Most importantly, we hope that we can see some progress in a few key areas. 

The next big change is that Hannah is going to Duke in March for a stem cell infusion. I am going to create a separate post about that and post it right after this one. We really hope to see meaningful gains over the coming months. We also hope to follow it up with at least 1 or 2 intensive therapies, which are always a big undertaking. This treatment is one that we’ve been praying about for a long time, and we are very hopeful that it will lead to some great things.

The final big change is that following her stem cell treatment, she’s going to have a feeding tube placed. This has been a long time coming, though we had hoped to avoid it. Despite being in feeding therapy for years, Hannah’s skills just haven’t advanced enough to support her growing body. She has fallen off her growth curve, and it is very difficult to keep her hydrated, particularly when she is sick. Hannah is a great, happy, non-picky eater, but her skills are immature. She is a slow eater and picks up one bite of food many times before it makes it down. She is unable to use utensils. We supplement with a pediatric formula, which she still drinks from a bottle, which we hold for her. We often have to fight her a bit when it comes to the bottle. This is pretty exhausting. Everyone knows that bottle feeding an infant is a tedious task, but it usually only lasts for about 6-12 months. We’ve been doing it for six years. She’s just not coordinated enough to drink out of any other kind of cup, despite years of feeding therapy. We’ve done our best, and we will continue to do our best, but we need additional help right now. 

So we met with the surgical team right after Christmas, and we think that we have a good plan in place. We will stay overnight in the hospital for this surgery, and then we’ll have a big learning curve. Our biggest concern is that Hannah will pull the tube out. Within the first six weeks, this is an emergency and requires a visit to the ER ASAP. After that, it can safely be replaced at home. My biggest fear is that she will pull it out while in bed at night, and we won’t know, and this could be very serious. We’re going to use all tools at our disposal to keep her from doing that. But she can be a little Houdini when she wants to be. 

Nevertheless, we are hoping to see positive results from the tube once we get into a routine with it. We hope that she will gain weight and strength. We hope that we’ll be able to keep her hydrated better and can keep her bowels moving better. (Constipation is a big problem for her with her low muscle tone.) We suspect that Hannah’s meltdowns happen when her belly hurts. We’d love to be able to keep her more comfortable. She will still eat and drink as she has been, but we will use the tube to top her off with extra hydration, formula (if needed), and medicine or supplements (if needed). Being able to put things in the tube opens up more possibilities for us and helps us ensure that she’s getting what she needs. 

These are all big changes to our routine. We hope that they will be really positive changes. We’d love to see Hannah make even a small bit of progress with communication, we’d love to see some of her sensory behaviors decrease (hair pulling, scratching, biting, chewing on things that shouldn't be chewed on, etc.), and we’d love to see her more comfortable and gaining well. We have so much hope placed in each of these things. Please pray that they would all be successful and that Hannah would thrive – whatever that means for her.

As for me, I will get another scan in March. If it is clear, I will plan to have my port removed. At that point, I will continue to see the doctor regularly and get labs, but I won’t need another scan unless I have symptoms. In other words, I’ll be back to my normal. That will feel good, though I still have a long way to go with healing mentally and emotionally. Physically, I am feeling pretty good. The biggest side effect that I still notice is nerve damage. My left foot feels like it’s vibrating a lot of the time, and sometimes it interferes with sleep. But, that’s a minor annoyance, and I’m thankful to be here. Still, please pray for my overall healing and wellbeing and pray that I would adjust to these big changes in our routine relatively easily. And please pray that we would soon be able to have times of fun, celebration, connection, and rest. We really need it. We are grateful to God for seeing us through thus far and know that he will continue to do so. But the journey is not yet over.