Home Again

Titus came home Sunday evening. As soon as came through the door, he seemed to relax and go into a deep sleep. It's like he knew he was back home where he belongs.

Tucker and Cade are over the flu and came home today. I am better, but have quarantined myself away from Titus until I know I'm not sick anymore. I wear a mask inside the house and am sleeping upstairs. Quita won't even sleep with me.

This still leaves the majority of the burden for caring for Titus on Becky's shoulders. She is so glad to be home and back in her own bed, but still feeds Titus every 3 hours and gives him his nebulizzer treatments every 3 hours. So, she's generally up for an hour, then tries to get some sleep in between the next feeding. She has also re-scheduled all of Titus' doctors appointments for the 3rd time and still finds time to love on all the boys and me. I've said it before but will repeat - but Becky D is the MOST AMAZING, AWESOME, PHENOMENAL, FANTASTICAL wife, mother, sister, daughter, and friend there is. She is filled with FABULOSITY!!!! And, I love her dearly - she still takes my breath away.

Titus has 3 doctor's appointments this week: one with the pediatrician as a follow-up, one with the pediatric pulmonologist, and our initial meeting at Scottish Rite. The pulmonologist will be checking his lungs and airway. Titus' airway is still S-shaped - and can still be compromised easily. The jaw distraction surgery has improved his ability to breathe dramatically, but the since it's S-shaped and after the RSV, he still has some struggles.

Scottish Rite will be examining and taking a base-line for Titus. As a reminder, Titus has a hemi-vertebrae at the base of his spine. This can cause curvature of the spine as he grows. By tracking a baseline and observing as he grows, they will be able to determine the best ways to treat for this. Titus right foot - which was almost club when born - has turned back to almost normal position. They will also be checking that to see if any casting needs to be done.

Over the next few weeks we have more appointments with the audiologists to discuss the flight plan for his deafness. And, we also have an appointment with the pediatric opthamalogist. The doctors have mentioned some concerns about his eyes, but there is no diagnosis yet. We do know all the "parts" are there and we know he responds to light/dark, but they will evaluate vision concerns. We will have appointments with the occupational therapists to work on his sucking/swallowing exercises so we can move past the g-tube, along with other therapy to address the delays of spending weeks in the hospital. We are also working on bumping up the amount of his feedings. When Titus left the PICU, he weighed over 9lbs 3 oz, but lost down to 8lbs 6 oz when they stopped the continuous feeds and sedation. He's burning up calories like crazy and we need to fatten him back up. He's up to 78cc every 3 hours, but we are trying to get to 90cc.

All of the above are prayer requests. Managing the doctors appointments and therapy along with caring for Titus and the boys make for very busy days and nights. But God is good, God has a plan, and God is in control.