God's Plan

Several weeks ago, we met with the ENT to discuss the results of the MRI and the possiblity of cochlear implants for Titus. Our appointment was at 4pm, but it was 4:45pm before we were called back to see the doctor. Dr. Bauer began by reviewing the MRI and the make-up of Titus' ears. The normal human cochlea has 3 corkscrew turns - Titus right ear has 2 1/2 turns, his left ear has 1 1/2 turns. The inner ear is made up of 3 connecting horse shoe shaped bones - Titus inner ear is just a mass of bone - not in the correct shape. This may lead to major balance issues for Titus since the inner ear controls our balance. The doctor went on to say you need 3 things to be able to walk: sight, inner ear, and sensation on the bottom of your feet. Titus has sensation on the bottom of his feet, but his vision is limited (if any at all), and now combined with the inner ear issue, made us realize that walking for Titus will be much more of a struggle than we originally thought.

The doctor continued talking about the inner make-up of his ears, and the need to do more genetic testing to rule out other syndromes that might affect his thyroid. The more he talked about the structural issues with Titus' ears, the more our hearts began to sink. I had tried to mentally prepare myself for this, but when you are in the moment, it's all very surreal and numbing.

Becky finally just bluntly stated to the doctor "So, you are saying Titus is not a candidate for a cochlear implant?"

To which the doctor replied, "Oh no, his cochlear nerve runs directly into the brain - he's a perfect candidate for a cochlear implant!" And, at that point, all the air came back into the room as we let out a collective sigh of relief. The doctor apologized for giving us the wrong impression and went on to talk about the process. Once Titus has a cochlear implant, he will not be able to have ANY MRI's done - anywhere on his body. Therefore, we need to make sure any MRI's that need to be done are done before. Also, he would like for any other major surgeries that Titus needs done to be completed before he does the cochlear implants. We know he needs the cleft palate surgery, but he's still too young to determine if anything will need to be done for the hemi-vertebrae in his back. But, Dr. Bauer is willing to do the surgery once Titus turns 1. He does want us to have low expectations though. The surgery may only magnify static for Titus or may not restore complete hearing. He would rather have us going in with low expectations than expecting that this will cure all of Titus’ needs. We feel that we are very comfortable with the diagnosis and probably outcomes after surgery---, but it is still a matter of prayer. Selfishly, I want my child to hear the sound of his name, to hear the laughter of his brothers, to hear his mother singing to him, to know the joys of music and conversation. And, I want to hear him talk, converse, tell us how he feels, and be able to communicate with others, but I have to know and accept that just like his vision, God has a plan and a design for Titus and will reveal that to us in His own timing.

The next day, Becky received a call from our social worker to let us know that Titus has been approved for the Medically Dependent Children's Program (MDCP). Even though we haven't received our notification in the mail, she wanted to call and let us know. Becky and Titus will now go spend 24 hours at a state-appointed nursing home after which he will be "officially approved". This will approve him for Medicaid and also allot a certain dollar amount per year for the care of Titus. We do not know the amount yet, but the social worker stated it was significant. And, again, we were floored. After months of dealing with the paperwork, signatures, interviews, and unknowns of all the processes surrounding the approval, this is almost done.

As mentioned in the last email, Titus had caught a cold. During that time, we increased his breathing treatments and CPT (continuous percussive therapy). Even though he had a cold, his breathing improved and we have now turned his oxygen down from 1/4 liter to 1/8 liter. He's been on 1/8 for 4 days now and his Oxygen Saturation is high. We are starting to test him by turning it off altogether and see how he does. This morning I walked into his room to find that he had pushed the canula out of his nose and up on his forehead, and his oxygen saturations were still high. When I had checked him at 4:45am, it was in his nose, but at 7:15am, it was out - so there's no telling how long it had been there, but the fact that his saturations were almost 100 is excellent. He is getting there.

Titus continues to be the happiest, most content baby you have been around. He's not quite sleeping through the night, but when he wakes at night, he plays in his bed. We can hear him in there just a babbling and laughing. He is also full of smiles for his parents and brothers. Whether he smells us or senses us, when we draw near to him, he totally lights up. Noah can make him laugh by kissing him on the forehead, Aidan makes him grin with Eskimo kisses, Cade is always careful to make sure he's put his antiseptic hand-gel on before he comes near, Quita, will not leave his side during a feeding or if someone new is in the house, and Tucker - well, Tucker is almost 4 and sometimes drops toys on him, squeezes to tight, or gives him slobbery kisses and then other times is sweet and tender and "reads" books to him. For those who haven't met him, Tucker defines the term "live-wire" - not hyper, just full of life and all boy.

As I have been teaching Acts at church, I have tried to focus on the timeline of the early church. In Acts 9, you read about Saul's conversion and how gung-ho he was to spread the gospel and how uncertain everyone was around him. In Acts 9:30, you read "they took him down to Caesarea and sent him off to Tarsus " and you don't hear anything else about Paul until Acts 11:25 "Then Barnabas went to Tarsus to look for Saul". What you don't know unless you read the footnotes or commentaries is that Paul spent approx 10 years in Tarsus .

And I think, whoa - 10 years - that's a long time. Why would God save Saul knowing that he was going to be an incredible witness and evangelists for the Gospel and then put him in Tarsus for 10 years where we don't hear a thing about him? Why didn't God start using him them? What was God waiting for? And all I can come up with is, because God had a plan. I can only imagine what those 10 years were like for Saul. I can see him studying the scriptures with new eyes and understanding and seeing how the story of Jesus was there all along. But it took 10 years of preparation, 10 years of study, 10 years for people to forget about his reputation, 10 years of maturity, 10 very long years before God revealed his plan.

Becky and I have been talking about how God has been laying down his plan for Titus long before we knew he existed. For example, when we bought our house 18 months ago, it was the only house we considered that had a bedroom directly across the hall from the master bedroom. Every other house we looked at had the all the other bedrooms on the 2nd floor or on the opposite end. But God knew there was going to be a precious child that needed to be 2 steps away from his parents.

When we bought this house, we prayed for a neighborhood where neighbors would be friends, and where the boys would have friends to play with. We were the 2nd family to move on to the street. And as the street has been built and neighbors have moved in, we have been blessed with a great neighborhood. But not just neighbors - but people we can call on any time - night or day. We have one neighbor who is a NICU nurse, another neighbor who is a nurse at the Children's hospital, another neighbor who has worked in Early Childhood Intervention for years, neighbors who have cleaned our house and walked our dog, and families who have kids the age of ours who play happily in the street. God knew and planned these relationships long before those houses were ever built.

And when we look to the future, we have learned to "be still and know that He IS God", knowing that we have no idea what God's plan is. But we do know, no matter how long it takes, God has a plan for us, for our family, and for Titus.

Please pray for these things:

• Titus and the bottle! - we have been so busy working on Titus breathing and strengthening his neck muscles, that we have not been working on oral stimulation (sucking on a bottle). When Titus first came home, he would suck on a pacifier, but that has stopped. We are currently giving him a little milk (about a teaspoon) through a bottle to get him interested in oral feeds. He's showing some interest, but this will take work and time. The doctors/therapists have encouraged us to try different tastes on his tongue to see what he likes (he really liked the watermelon slurpee last Saturday). Please pray for Titus’ sucking ability.


• Titus schedule - we have adjusted his schedule to feeds every 4.5 hours with the last feed at 7pm (no more late night feeds - YEAH!). Titus is taking good naps during the day, but we are really working on his nighttime sleep. As mentioned above, he wakes up happy and playing, but the playing sets his monitors off, which cause us to get up and check on him.


• Titus breathing - as mentioned above, he's showing improvement and we are weaning him off oxygen, but it will be nice to have him oxygen altogether. We have a family vacation coming up on Labor Day, and I really don't want to haul oxygen tanks across the country!


• Titus neck/trunk muscles - Titus is showing improvement in holding up his head, but only for a few seconds. We are working on this diligently. Again, it takes time in the day to exercise and it wears him out. But he has incredible dexterity with his fingers and is starting to grab his toes.


• Upcoming surgeries - as mentioned above, the cochlear implants can be done after he is a year old, but nothing has been scheduled at this time. We also have to schedule his cleft palate surgery.

And last thing - and that's a request for you. We are creating a prayer tree for Titus. We would love to attach pictures or scriptures of those people who are praying for him. If you get our updates and are praying for Titus, can you send us a picture of you or your family or the scriptures that you are praying for them. We will print them off and attach them to his Prayer tree in his room. You can email those to pgdaily@yahoo.com.

The Reality of Routine

Titus has been home from for 2 weeks now after his Glaucoma Surgery. He is doing good - and his eyes are clear and not swollen. It's still too early for them to test his vision and see if there is any permanent damage to his eyes. He is still on oxygen (at very low settings), and begins to struggle after an hour if we turn it down or off. The pulmonologist believes a small portion of his lung may have collapsed after the last surgery and it's just taking awhile to get back. We are becoming quite adept at carrying him around the house with this oxygen hose trailing behind and taking him to the doctor/church with portable tanks.

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).