This week went by quickly. It seemed like we had something going on each day. Tuesday evening Devin went to the doctor because he thought maybe he had a lung infection since he was feeling very congested. Thankfully it turned out to just be really bad allergies. The doctor told him to start taking allergy medicine daily because it’s most likely due to all the pollen and other allergens circulating right now. 

 

Yesterday morning I went back to the gym, which felt really good. It was nice getting back into a routine and seeing everyone there again. Devin stayed home because we had some things we needed to get done, and later in the day we had a virtual appointment with Abigail’s plastic surgeon in Boston. 

 

The appointment went really well and was very informative. We got all of our questions answered, and we’re excited to see how much of a difference this surgery could make in Abigail’s life. The images the doctor showed us comparing how her jaw looks now versus how it should look post-op showed a very big difference. 

 

He did explain that this is a very intricate surgery and will definitely last around six hours. He said this will not be like the airway surgery where things moved quicker than expected because there are so many detailed parts involved in this procedure. Abigail will spend some time in the PICU after surgery as well. He also mentioned that surgery most likely won’t happen any sooner than August because his schedule is currently packed. Abigail will also be his only case that day. 

 

This morning both kids woke up not feeling well. Abigail was up multiple times throughout the night because she didn’t feel good. We’re hoping it’s just allergies. 

 

I also wanted to answer a question I’ve gotten multiple times lately: “Will we ever stop putting Abigail through surgeries?” The answer is yes. Devin and I have talked about this many times, and at some point, we will stop pursuing surgeries. The reason she has had multiple surgeries is that we truly believed they would help her. But we are also very aware that eventually there may come a point where surgeries become more elective rather than truly beneficial, and when that time comes, we will stop. 

 

We also understand there’s a chance Abigail may never get her trach removed, even after all these surgeries, and we are okay with that because at the end of the day, her trach has saved her life many times. Of course, as parents, we would love to one day see her without it, but we also trust that God has a plan for everything. 

 

One of the biggest things for Devin and me is knowing that we did everything we possibly could for her and took her wherever we believed she could get the best help. Right now, we truly feel she’s receiving the care she needs in Boston.