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.
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