As I sit and enjoy a few minutes of peace and quiet before the Sirmon sisters start their day, I am also watching Benjamin’s O2 saturations on the monitor hang out a little lower than I would like. Lennon and I started with a cough this week and Isla has projectile snot every time she sneezes, so I figured it would be only a matter of time before Benjamin would also show some symptoms. I am praying that this is brief and easily managed.
On a positive note, Benjamin had a good week of appointments. Thursday, Benjamin had speech therapy. Benjamin has not been swallowing as well since his last hospital stay, and his therapist has had trouble facilitating a swallow with just water. (not very tasty) Wednesday, the therapist tried breast milk with Benjamin with some improvement, and Thursday, mixed a small amount of puréed pears with the breast milk. Previous studies on mice show that breast milk is safe for the lungs if aspirated, and we were ready with suction when trialing the pears. Once Benjamin tasted the pears, it was like we had starved him. He swallowed more than the last few sessions combined, and when he was finished, he continued to fish around his face with his tongue looking for one more taste. Success! We can’t work with the pears often in fear of aspiration, so next week we are trying frozen breast milk for its consistency. She is not working with the pears in hopes that Benjamin will eat soon, she is only using the taste to help facilitate a swallow. He must be able to handle his saliva before we can even consider eating. Benjamin’s speech therapist is on his team. She doesn’t give up, and continues to brain storm for new ideas.
Friday, Benjamin was scheduled for MDA neuromuscular clinic. Though we are very happy with Benjamin’s neurologist and pulmonologist, MDA clinic gives us access to additional brilliant minds, including an orthopedist. We received all good news. They all thought Benjamin looked great, and to continue whatever we are doing. Spine was straight, chest x-ray was clear, and he showed the neurologist all of his tricks.
I am sure the silence in this house will be breaking soon, so I will sit and enjoy watching Lennon snuggle up to Benjamin on a pallet on the floor. Lennon asked for a slumber party in the living room, so our floor is covered with blankets, and I am far from well rested from sleeping on the couch. I love watching how much they love Benjamin, as well as, wanting to include him in everything.