It is wonderful having him home, but also tiring. In the course of the day, Titus is fed every 3 hours (10-30 minutes), he has a nebullizer treatment 4 times today (15 minutes) followed by CPT (15 minutes - continuous percussive therapy - where we pound his back with this suction cup thing), another breathing treatment twice a day, eye drops 4 times a day, cleaning his jaw pins/g-tube 4 times a day, and general therapy on motion/movement throughout the day. We have reduced his feedings at night from 2 feedings to one - which is a huge blessing to only have one of us get up once a night. Becky slept all night last night for the first time in weeks. Since Titus is on oxygen, he is also on a pulseoximeter - which monitors his heart rate and oxygen saturation levels. But, if Titus is kicking his foot (where the monitor is attached) or squirming, the meter doesn't read, and the alarms go off. Imagine this happening about 20-30 times a day - generally at night! The doctor also suspects that Titus may have allergies which is causing the excess congestion. We have a suction machine to help with that several times a day if we feel it is affecting his breathing. The doctor is allowing us to give a very small dose of Benadryl to help with congestion. On top of the daily routine, Titus generally has 2-3 doctor's appointments during the week, which also means the schedule needs to be adjusted to fit within the time frame and drive to the doctor.
And, along the way, there are 2 other boys that need to be home schooled and 2 3-year olds that need structure and routine (and long naps in the afternoon). The reality of the routine can be overwhelming - and on certain days it is. The regimen that we follow cannot be deviated from and it's become an incredible lesson in discipline and obedience. Becky and I were discussing that it's easy to follow a routine if you know where it's headed, but it's difficult to consistently day-after-day follow the same routine and not know what the end result will be or see immediate results. We have to remind ourselves that everything is baby steps with Titus. And we received sage advice to celebrate those baby steps - he is not going to hit the same developmental milestones in the same time frames as other babies his age. Others have told us that the first year of child with special needs is the hardest. And, we can see how that can be true.
As I was contemplating our routine, I thought about Noah. It took Noah 120 years to build the ark - and he had no idea what the end result was really going to be. And yet, the Bible does not tell us much about that 120 year span. But for 120 years, Noah cut down trees, made lumber, prepared a foundation, built a boat, created barrels and barrels of pitch to coat the ark with . . . He did all the tiny tasks - day in and day out - to complete the plan exactly as God told him too. Along the way, he had 3 sons, raised those boys, watched them get married, maintained his marriage and livelihood and relationship with God, and still built the ark. I wonder - did Noah get tired of cutting down trees and picking out the splinters from his hands? Did he ever question why he was doing it? Did he ever get rid of the smell of pitch/tar? Did he ever take a day off? Did he ever question God's plan? It will be interested one day in Heaven to sit down with Noah and ask him those questions. But what I do know is what the Bible tells me "Noah did everything just as God commanded him." Noah must have been faithful with all the little tasks given him to be provided with such a large task. So, we carry on with the little tasks. They may be tiring and we may not know the results for weeks/months or even years to come, but I am reminded - Noah never stopped building that ark until it was complete.
The next few weeks will be busy with upcoming tests and surgeries. We wanted to let you know how to pray specifically for these things and also let you know how God is answering your prayers.
Please pray specifically for these items:
- Titus will have a swallow test done today. The doctors did an initial swallow test very early on and this is an update to see if he will aspirate (water/food/saliva) into his lungs versus down his esophagus into his stomach. If this is successful, they will start more therapy to introduce him to swallowing liquids. This is just one step to getting him off the feeding tube. Titus does great with a pacifier and he's very close to sucking his thumb (he gets those hands up to his mouth).
- Titus will have his follow-up jaw distraction surgery on April 2 at Medical City Dallas. This surgery will be to remove the devices put into his jaw that stretched it out. Specifically we pray he remains healthy prior to the surgery, that the bone that has been formed through the stretching will continue to harden, and for no complications after surgery from infection. Also, due to his breathing issues, we are praying that another round of anesthesia does not set him back. Dr. Genecov and his incredible staff at the International Cranio-Facial institute will be doing the surgery.
- When he goes in on April 2, we are also coordinating with Dr. Peters, the audiologist for a 2nd ABR test. When they did the initial test, Titus was not sedated, but for this test, they need him fully sedated. We have asked if they could coordinate this with his other surgery to only anesthetize him once instead of twice. Dr. Peters will be putting together the plan for his hearing (hearing aids to stimulate the ears - cochlear implants in the future), but we have had to delay these appointments due to the RSV and glaucoma surgery.
- Titus has a one-month follow-up/surgery in Houston with Dr. Feldman for his glaucoma on April 14. We will drive down to Houston for the weekend, have the appointment on Monday with surgery that afternoon. Again, we are praying for quick recovery for his eyes and his breathing.
We also want you to offer up praise and thanksgiving for the following answered prayers:
- Titus has Medicaid coverage up to Feb. 29, 2008. This should cover the remainder of bills we are responsible for after our primary insurance has paid. Since we have already met the yearly out-of-pocket max, we aren't too concerned about the remainder of the year since insurance will cover, but having Medicaid coverage for the initial 54 days in NICU and the 33 days with RSV will help tremendously. We are still working on full-time Medicaid coverage and SSI benefits, but for now, this is a step in the right direction.
- We have a new Suburban to carry everyone in. I had mentioned that we were looking for a vehicle that would allow for all of us to be in the car together. God provided in an incredible way allowing for us to purchase a car at auction through a dealer. So, we are the proud owners of a new (used) 2008 Tank (ok - it's a Chevy Suburban). The boys and I spent last Saturday re-organizing the garage so that we could park it there (with just 2 inches to spare). And last of all, please say a prayer of thanksgiving for my incredible wife who has a birthday on Friday, March 28. My life would not be complete without her and I treasure the day she was born (and the fact that she's SO much younger than me - she keeps me going).