Update on Titus

Well - it looks like Titus has a new tooth. It's his first one on top. It's barely breaking through, but it would explain the slight fever and increased secretions he has been having.

January will be a very busy month for Titus. His cochlear implant will be turned on this Thursday. We are excited to see how Titus responds, but also know this will be quite the shock to his senses. They tell us you can never anticipate how a child will respond, but you can only imagine the sensory overload you would experience to go from not hearing to hearing.

Also, Titus is being fitted for braces for his legs this week. Although Titus is still working agressively in therapy on learning to sit up, hold his head up constantly, etc, they want to fit his legs for braces to work on him standing. From a physical development perspective, Titus is developmentally at 4+ months - so he's not sitting up yet, but he is showing improvement. They work Titus hard at therapy 4 times a week. There are days he is tuckered out before or after therapy. But the therapist love him dearly. Several weeks ago, I went to therapy with Becky and Titus. They were working on him sitting up and holding pressure on his arms. He would grunt and groan, but would do it. And after the therapist would stop working on one exercise, he would look up at her and smile. It was like "look at me - I did it!".

The big thing coming up this month is his cleft palate repair surgery on Monday, January 19th. This is major surgery for our little guy and it's anticipated he will have a 3-5 day hospital stay. At this point, we have no way of knowing how long he will be in the hospital and if he is on the regular Pediatric floor of the hospital, someone has to be there with him 24X7. If he is in the PICU, we can leave him for several hours since in the PICU he is assigned a full-time nurse to look after him. But along with caring for Titus in the hospital, we have 4 other boys that still need to be attended to and cared for. Hospital stays are hard on all of us.

The surgeon is hopeful that repairing the palate will not only allow Titus to begin feeding therapy, but it may improve his breathing. We realize that feeding him orally will take months, even years before the g-tube is removed. I think we would be more excited about seeing his breathing improve at this point. It's hard to explain, but realize that Titus has no palate - so it's pretty much an open space from his upper gums to his sinuses. Therefore any air coming in his nose can easily escape out of his mouth since he sleeps with his mouth open. Even thought he is on oxygen, we wouldn't be surprised if most of it goes in the nose and exits right out of his mouth. Improving his breathing is a huge prayer request.

After surgery, we will also have more therapy for Titus in addition to his regular physical and occupational therapy. They will add in more speech/hearing therapy and feeding therapy. As you can imagine, that's several more meetings per week to be scheduled.

As Becky and I were talking this week, we are excited but also nervous about all the upcoming changes. We do realize how comfortable you can get in your routine (even if it involves getting up several times a night, multiple breathing treatments a day, suctioning out secretions, etc). All of that has just become part of our normal daily routine. But we also know that with surgery comes more pain for Titus, more temporary discomfort, more changes in the routine. We would appreciate your prayers over the next few weeks.