From Boston to Home: Lots of Updates

After a very busy week of appointments in Boston, we are finally back home in Virginia! We packed a lot into our time there, and received encouraging information.

Wednesday started with an appointment with Dr. Gallant. She believes the next step to help Abigail with her drooling may be to remove one of her main salivary glands. However, she doesn’t think now is the right time to do that. We want Abigail to be eating 100% by mouth before we consider that surgery.

Abigail also had a swallow study, and we were so encouraged by the results! Her study in April showed that she was continuously aspirating, but the study she had last week showed that her aspiration is now minimal. We also learned something new about the way Abigail swallows. She actually swallows in three stages, rather than everything going down in one swallow. Because of this, the aerodigestive team wants her to have a brain MRI to make sure the part of her brain responsible for swallowing looks the way it should.

Thursday was another very busy day.

First, Abigail had a dentist appointment, and she did SO good! She didn’t cry even one time. They took an X-ray of her teeth, and it showed that she may start losing some of her baby teeth soon because her adult teeth are already beginning to come in.

She also had a sweat test, which came back negative for cystic fibrosis. We are very thankful for that!

Afterward, we saw Dr. Simoneau, her pulmonologist, who performed a trach pressure test. The test showed that Abigail’s airway is open, and the only thing currently causing an obstruction is her tonsils and adenoids.

Another exciting step is that Abigail has been tolerating her speaking valve really well. This is one of the final steps before decannulation. After she has her tonsils and adenoids removed in November, the plan is to begin completely capping her trach. If everything continues to go well, ENT wants to remove her trach this upcoming summer! 

After pulmonology, Abigail had a hearing test that lasted about an hour. This was the longest hearing test she has ever had, and she did incredibly well. Her hearing is pretty much the same in both ears. She has bilateral conductive hearing loss and is considered legally deaf.

Her audiologist also checked her hearing aids, and she is now tolerating them 24/7, which is another huge step!

Our last appointment Thursday was with dermatology to talk about Abigail’s hair loss. The doctor prescribed a lotion for us to start using, and he will see her again in March.

Friday we met with Dr. Remenschneider, a neurotologist, to talk about Abigail’s ears and hearing. He explained that the next step for her hearing will be a hearing implant. He also told us that the bones in her inner left ear are stuck and aren’t vibrating the way they should. With the implants, Abigail will be able to hear 100%. That surgery is planned for this upcoming summer.

We will now be traveling back to Boston about every three months for appointments and surgeries.

Devin and I are trying to figure out what the best option is for our family, especially now that Gunnar is in school full time. We are praying about whether temporarily moving might be something worth doing. Boston is incredibly expensive, but we are so grateful for the care Abigail is receiving at Boston Children’s and for the doctors who continue to help us figure out the next steps in her journey.

November 23, Abigail is scheduled to have her tonsils and adenoids removed. We are praying that this surgery goes smoothly and that it will be the next big step toward getting her trach out!

The kids started school this week! We are praying they have an amazing school year, learn lots, make new friends, and continue to grow.

We are tired, grateful, hopeful, and taking everything one step at a time. 

Please continue to pray for Abigail, especially as we look toward November and everything that is coming next. We are so thankful for everyone who continues to pray for our family and walk alongside us through this journey.