It's funny how your mind flashes back to situations that happened, how vividly you can recall the events past and re-live them in your mind, even when you had forgotten them.
One year ago, Becky was working at a showroom at the World Trade Center in Downtown Dallas. She was 14 weeks pregnant with Titus, but really wanted to work this show with her friends.
It was 4:00pm when I got a call from Becky. She only said 2 words.
"I'm bleeding"
And then she sobbed.
Immediately my mind went to places I had not allowed it to go over the last 14 weeks. We had gone through multiple miscarriages in the past and knew all the signs. We thought we had passed all the milestones to show it was a healthy pregnancy after having numerous sonograms, including high-level ones, and hearing the heart-beat each over the last several visits.
But, here we were, on a hot day in June, and Becky had experienced a sudden gush of blood and tissue.
Helplessness was the first emotion I felt - I was 20 miles away and somehow how to figure out a way to get to my wife and get her to her doctor at the hospital. And also knowing, there was nothing I could do to change what was happening at that point in time.
I got in my car and flew down the tollway. I made it down there in 15 minutes (which at that time of day in Dallas is a miracle in itself - and the fact I didn't get a ticket.) Becky was experiencing a comedy-of-errors as security was trying to get her out of the enormous building to the car.
When we saw each other, we both had fear in our eyes. And yet, it still amazes me how God can also produce calm and peace during such a time. As I drove to the hospital, we prayed and prayed.
Upon arriving, the staff was ready for us and immediately put Becky in a room and got her hooked up to a fetal monitor. And at that moment, we heard the most precious sound - a strong, beating heartbeat of our son. After sonograms and examinations, it turns out Becky had a moderate case of placenta previa. After a few weeks of bed rest, she was back on her feet again.
I had mostly forgotten the events of that day until Becky asked if she could work Market again last week. In the last 7 months, we have had so many life-threatening situations with Titus, but God has destined my boy to be a fighter, a survivor, and has an incredible plan for him.
Sunday, June 22, 2008
Sleeping Through the Night
I almost hesitate to post this, but Titus has slept through the night the last 2 nights. He still moves around a bit, which set his monitors off, but, he is not awake. He had gotten in the habit of waking around 2am for an hour and then again around 4am for about 2 hours. We would hear him in there laughing and babbling, playing with his feet and hands (and generally pulling his canula out), but for the last two nights - he has slept.
Or, I have slept so deeply that I didn't hear him.
Becky has been working at a showroom for the Flower and Gift Market at downtown Dallas for the last several days. As she was leaving for work yesterday, Tucker asked her where she was going.
"I'm going to work and daddy is going to stay home with you all day", she answered.
"No, Mommy, Daddy's go to work, not Mommy's - you STAY HOME!", Tucker replied.
Needless to say, he fell apart as she was driving off, but quickly recovered and life went on.
Of course, Paul is exhausted after a full day with the boys, cleaning the house, and cooking 3 meals.
Or, I have slept so deeply that I didn't hear him.
Becky has been working at a showroom for the Flower and Gift Market at downtown Dallas for the last several days. As she was leaving for work yesterday, Tucker asked her where she was going.
"I'm going to work and daddy is going to stay home with you all day", she answered.
"No, Mommy, Daddy's go to work, not Mommy's - you STAY HOME!", Tucker replied.
Needless to say, he fell apart as she was driving off, but quickly recovered and life went on.
Of course, Paul is exhausted after a full day with the boys, cleaning the house, and cooking 3 meals.
Wednesday, June 18, 2008
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:
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.
Thursday, May 29, 2008
Somebody's Praying
Many of you have emailed asking for an update from the last few weeks of doctor's visits. Here's what we know to-date.
On Sunday, May 18, Becky, Titus and I drove down to Houston for his visit with the glaucoma specialist. We had a good trip and stayed at the Hilton next to the hospital (still using all those Hilton Honors points I h
ave from years ago of traveling). Early the next morning, we showed up for his evaluation under anesthetic with full expectations that they would take him straight into surgery. We had the same anesthesiologist we had last time (who is wonderful) and a relief to us to have someone who knows Titus and his condition. After they took him back, Becky and I settled into the waiting room expecting to be there for several hours. You can imagine our surprise when Dr. Feldman came out 45 minutes later and said "his eye pressures are fine - no need for any further surgery - you're free to go home as soon as he comes out of recovery". We were stunned (and asked him to repeat it all again). This means that the channels they installed in the two previous eye surgeries are doing the job of regulating his eye pressure and therefore controlling the glaucoma. Titus bounced back from anesthesia pretty quickly and by 11am, we were back in the car on our way back home to Frisco. All I can say is, somebody was praying.
Titus will still have very limited vision - if any at all. Although Dr. Feldman will not use the word "blind", he was very clear that the optic nerve was never fully formed, there was damage done by the glaucoma, and at this time, there is no known cure/surgery for this. Until Titus can communicate, we will not know how much sight he has. We do know he responds to light and dark, and we feel he can see shapes/shadows, but time will tell. We are still coming to terms with this. It's not like we didn't know this, but to have it finalized by the doctor is still hard. I began doing research on deaf-blind children and programs, but had to stop. Like with many things we've learned, we have to forge ahead and make a plan, but there are some days, you need to be quiet and grieve a bit.
The following Wednesday, May 21, Titus had his MRI/CT scan. This had been previously scheduled for earlier in the month, but was postponed since the machine had broken down. It was another early morning to get up and be at Medical City early, but they were right on schedule and by noon, we were back home. We had 3 doctors requesting the results of the MRI/CT scan: the ENT (Dr. Bauer) was the primary doctor since he's looking to see the make-up of Titus ears and if he will be a candidate for cochlear implants, the Neurosurgeon (Dr. Price) who would be checking the status of the Dandy-Walker variant (cyst at base of brain) and determine the need for more MRIs and would have input into the cochlear implants, and the Geneticist (Dr. Cramer) who is still looking for clues of any syndromes that Titus may have.
Yesterday, the assistant for the neurosurgeon called to let us know that Dr. Price had reviewed the MRI and did not detect the Dandy-Walker variant (cyst). We know that last month when we met with her, she had reviewed the MRI from when Titus was 2 weeks old and saw the cyst then. We know she talked to us about Dandy-Walker (which can cause severe motor skills delays) and now she is telling us it's not there and she doesn't need to see us back in her office for a follow-up. If we were stunned when Dr. Feldman told us his eye pressures were fine, you can only imagine how stunned we were to hear this news. In fact, I'm still in shock. Again, all I can say is, somebody's praying and God still has the final word.
We heard today from the ENT and have a scheduled appointment with him on June 5th. He has not received the MRI results yet, but will by the time of our appointment. Our prayer is that Titus is a candidate for cochlear implants - and if so, we can make a plan for those to be implanted.
Paul had applied for and was approved for intermittent FMLA at work, which means he can now take time off when needed (up to 12 weeks) to help attend to Titus. And, we are still waiting to hear if we were approved for MDCP (Medically Dependent Children's Program). We have had our nurse visit and social worker visit a month ago, and are awaiting the pediatricians office to complete their paperwork. Once we are approved for MDCP, Titus will be approved for Medicaid - which will also allow us to start therapy back. Currently, our insurance only pays for 20 days of therapy (which we have almost exhausted) and considering that Titus will need several types of therapy (speech, occupational, and physical) we need to get him into a good program that will begin working with him. Becky had a visit with one of the therapy centers yesterday and was very pleased with how they worked with Titus (they wore him out after 15 minutes), but also how they showed/instructed her to work with him. They were also very encouraged on how's he's progressing. They feel his development is around 2 months of age - which is how we feel he's been responding. He is lifting and holding his head more and more - and if on his belly, can kick those legs to scoot around a bit (ok, maybe an inch - but I was cheering him on big time). And again, I know somebody's praying for his development.
We also have set up an appointment with a financial planner who specializes in special needs trusts. If Titus is approved for MDCP and Medicaid, he can not have any assets or savings and cannot be the beneficiary in our will, or it will immediately disqualify him and he could lose his benefits for life. A special needs trust can be set up legally to assist in some ways and we will be learning how to do that along with having our will updated. Honestly, as a father, having to remove him from the will has really hit me hard, but I know his heavenly Father has it all in control and will never remove him from his spiritual inheritance.
This week, Becky and Paul have come down with a bit of a cold/drainage and Titus has caught it. So far his lungs are clear and his breathing is fine, but he has a little hacky cough and we are suctioning him every few hours. But even with a cold, we are seeing marked improvements in his breathing. He's still on oxygen, but his levels are consistently high. We are testing him at lower levels or without oxygen and he is going longer without each time. And even with a cold, Titus is sleeping more and more at night. Last week, his monitors went off only 1-2 times a night - which is a HUGE improvement over 2-3 times an hour. We actually have gotten some good sleep and I know (based on several emails we have received) many of you have been praying for rest for us (please DONT" STOP! )
As Titus turned 6 months old, I couldn't help but reflect back over the last 6 months. Life has certainly changed, we have learned more information, met more doctors/nurses, spent more times in hospitals than ever imagined, have had (and continued to have) sleepless nights, felt completely helpless at times and have shed more tears than you can imagine. But, we have also felt peace, felt the prayers, and know we have been carried through by countless prayers of people we know and don't know. As I stated once before, we have always wanted this to be a journey of faith and not a journey of fear. And, one of the most beautiful gifts we have received is that Titus is the happiest, most content baby you will ever meet. He rarely cries, he greets you with a huge toothless grin, he laughs and giggles, he is filled with joy and we are blessed to be his parents.
At our Father-Son campout 2 weeks ago, one of the boys (Christian Loth) came up and asked me how Titus is doing and let me know he's still praying. At Becky's GEMS cookout, numerous parents let us know that their children still pray for Titus every night. So Christian and all you boys and girls that are praying for Titus - thank you! God hears your prayers and is answering them in a mighty way.
Please pray for these things in the next few weeks:
On Sunday, May 18, Becky, Titus and I drove down to Houston for his visit with the glaucoma specialist. We had a good trip and stayed at the Hilton next to the hospital (still using all those Hilton Honors points I h
ave from years ago of traveling). Early the next morning, we showed up for his evaluation under anesthetic with full expectations that they would take him straight into surgery. We had the same anesthesiologist we had last time (who is wonderful) and a relief to us to have someone who knows Titus and his condition. After they took him back, Becky and I settled into the waiting room expecting to be there for several hours. You can imagine our surprise when Dr. Feldman came out 45 minutes later and said "his eye pressures are fine - no need for any further surgery - you're free to go home as soon as he comes out of recovery". We were stunned (and asked him to repeat it all again). This means that the channels they installed in the two previous eye surgeries are doing the job of regulating his eye pressure and therefore controlling the glaucoma. Titus bounced back from anesthesia pretty quickly and by 11am, we were back in the car on our way back home to Frisco. All I can say is, somebody was praying. 
Titus will still have very limited vision - if any at all. Although Dr. Feldman will not use the word "blind", he was very clear that the optic nerve was never fully formed, there was damage done by the glaucoma, and at this time, there is no known cure/surgery for this. Until Titus can communicate, we will not know how much sight he has. We do know he responds to light and dark, and we feel he can see shapes/shadows, but time will tell. We are still coming to terms with this. It's not like we didn't know this, but to have it finalized by the doctor is still hard. I began doing research on deaf-blind children and programs, but had to stop. Like with many things we've learned, we have to forge ahead and make a plan, but there are some days, you need to be quiet and grieve a bit.
The following Wednesday, May 21, Titus had his MRI/CT scan. This had been previously scheduled for earlier in the month, but was postponed since the machine had broken down. It was another early morning to get up and be at Medical City early, but they were right on schedule and by noon, we were back home. We had 3 doctors requesting the results of the MRI/CT scan: the ENT (Dr. Bauer) was the primary doctor since he's looking to see the make-up of Titus ears and if he will be a candidate for cochlear implants, the Neurosurgeon (Dr. Price) who would be checking the status of the Dandy-Walker variant (cyst at base of brain) and determine the need for more MRIs and would have input into the cochlear implants, and the Geneticist (Dr. Cramer) who is still looking for clues of any syndromes that Titus may have.
Yesterday, the assistant for the neurosurgeon called to let us know that Dr. Price had reviewed the MRI and did not detect the Dandy-Walker variant (cyst). We know that last month when we met with her, she had reviewed the MRI from when Titus was 2 weeks old and saw the cyst then. We know she talked to us about Dandy-Walker (which can cause severe motor skills delays) and now she is telling us it's not there and she doesn't need to see us back in her office for a follow-up. If we were stunned when Dr. Feldman told us his eye pressures were fine, you can only imagine how stunned we were to hear this news. In fact, I'm still in shock. Again, all I can say is, somebody's praying and God still has the final word.
We heard today from the ENT and have a scheduled appointment with him on June 5th. He has not received the MRI results yet, but will by the time of our appointment. Our prayer is that Titus is a candidate for cochlear implants - and if so, we can make a plan for those to be implanted.
Paul had applied for and was approved for intermittent FMLA at work, which means he can now take time off when needed (up to 12 weeks) to help attend to Titus. And, we are still waiting to hear if we were approved for MDCP (Medically Dependent Children's Program). We have had our nurse visit and social worker visit a month ago, and are awaiting the pediatricians office to complete their paperwork. Once we are approved for MDCP, Titus will be approved for Medicaid - which will also allow us to start therapy back. Currently, our insurance only pays for 20 days of therapy (which we have almost exhausted) and considering that Titus will need several types of therapy (speech, occupational, and physical) we need to get him into a good program that will begin working with him. Becky had a visit with one of the therapy centers yesterday and was very pleased with how they worked with Titus (they wore him out after 15 minutes), but also how they showed/instructed her to work with him. They were also very encouraged on how's he's progressing. They feel his development is around 2 months of age - which is how we feel he's been responding. He is lifting and holding his head more and more - and if on his belly, can kick those legs to scoot around a bit (ok, maybe an inch - but I was cheering him on big time). And again, I know somebody's praying for his development.
We also have set up an appointment with a financial planner who specializes in special needs trusts. If Titus is approved for MDCP and Medicaid, he can not have any assets or savings and cannot be the beneficiary in our will, or it will immediately disqualify him and he could lose his benefits for life. A special needs trust can be set up legally to assist in some ways and we will be learning how to do that along with having our will updated. Honestly, as a father, having to remove him from the will has really hit me hard, but I know his heavenly Father has it all in control and will never remove him from his spiritual inheritance.This week, Becky and Paul have come down with a bit of a cold/drainage and Titus has caught it. So far his lungs are clear and his breathing is fine, but he has a little hacky cough and we are suctioning him every few hours. But even with a cold, we are seeing marked improvements in his breathing. He's still on oxygen, but his levels are consistently high. We are testing him at lower levels or without oxygen and he is going longer without each time. And even with a cold, Titus is sleeping more and more at night. Last week, his monitors went off only 1-2 times a night - which is a HUGE improvement over 2-3 times an hour. We actually have gotten some good sleep and I know (based on several emails we have received) many of you have been praying for rest for us (please DONT" STOP! )
As Titus turned 6 months old, I couldn't help but reflect back over the last 6 months. Life has certainly changed, we have learned more information, met more doctors/nurses, spent more times in hospitals than ever imagined, have had (and continued to have) sleepless nights, felt completely helpless at times and have shed more tears than you can imagine. But, we have also felt peace, felt the prayers, and know we have been carried through by countless prayers of people we know and don't know. As I stated once before, we have always wanted this to be a journey of faith and not a journey of fear. And, one of the most beautiful gifts we have received is that Titus is the happiest, most content baby you will ever meet. He rarely cries, he greets you with a huge toothless grin, he laughs and giggles, he is filled with joy and we are blessed to be his parents.
At our Father-Son campout 2 weeks ago, one of the boys (Christian Loth) came up and asked me how Titus is doing and let me know he's still praying. At Becky's GEMS cookout, numerous parents let us know that their children still pray for Titus every night. So Christian and all you boys and girls that are praying for Titus - thank you! God hears your prayers and is answering them in a mighty way.
Please pray for these things in the next few weeks:
- Our appointment with the ENT on June 5 and that Titus will be a candidate for cochlear implants.
- Our application for MDCP will be approved so we can begin therapy and continue home health care visits.
- Titus' lungs will continue to strengthen and we can wean him off of oxygen.
- Titus, Becky, and Paul with their colds.
- Becky and Paul as they deal with all the diagnosis, planning, and change.
- Guidance and direction as a special needs trust is put into place and wills are updated
Thursday, May 8, 2008
So You Wanna Go Back to Egypt
It's been several weeks since I sent the last update and we have several upcoming events that we would appreciate your prayers on. This one is a little long, so you may want to grab a diet coke/cup of coffee and sit down for awhile.
Next week will be a milestone week for Titus. He will turn 6 months old on Wednesday and next week will also mark the timeframe when he has spent more time at home than he has in the hospital. It is such a joy to have him home and integrate him into the Daily lifestyle. Titus is quite the trooper. He goes to church with us on Sundays and Wednesdays, goes on walks around the block with the boys (and Quita), goes out to eat with all of us, and has even made a few trips to the store. We always carry an extra oxygen tank around with us if he gets low, but having him on oxygen does not keep him tied down to the house. And, Titus got his first haircut last Saturday - we just had to trim up his curly hair a bit since he had developed quite a mohawk after it fell out on the sides (but stayed very long on the top). But check out the pics I've attached.
On Sunday, May 11, (Mother's Day), Titus will participate in Baby Dedication at our church. We will be so honored to stand there and dedicate our precious son, but also to pledge our continued support to raising him in a Christian family. Honestly, this baby dedication will be so different than the others we had participated in for Aidan, Noah, Tucker, and Cade since we know the life that Titus will lead is going to be drastically different from the other children standing up there with us. There are days we struggle when we see another 5 month old child who is able to hold up his head, turn to his father's voice and react in the way a child does that does not have the physical or developmental delays. But we know that Titus has been "fearfully and wonderfully made" and our love for him grows deeper every day.
On Monday, May 12, Titus will have a MRI / CT Scan done at Medical City. The MRI / CT Scan is being done for 2 doctors assessments. The ENT will be assessing Titus' ears so he can better determine if cochlear implants will be a "fit" for Titus. Secondly, the neurosurgeon will be checking the Dandy-Walker Variant (cyst at the base of brain). We had an appointment with the neurosurgeon several weeks ago, and she was encouraged at the growth and development of Titus head - it is growing upon the normal growth curve. Too little growth might indicate the brain is not growing, and too much growth might indicate a fluid buildup, but at this time there are no concerns and his head growth/circumference was right on track.
On Monday, May 19, Titus will be back in Houston at Dr. Feldman's for a checkup and day surgery on his eyes. It's still too early to determine the damage done to his eyes from the congential glaucoma. The optic nerve in his left eye was not fully developed, so there's not a lot of hope that there will be vision in his left eye. His right eye does not have as much damage, but does have some. We do feel there are times when Titus is concentrating and looking at something, but again, it's still too early to tell. Our prayer is that the pressure in his eyeballs are normal and that the 2 previous surgeries are providing the necessary drainage needed in the eye.
Becky and I would both admit that the last month has been very hard. Although Titus has consistently been home most of that time, the weariness of getting a full night's sleep is starting to wear us down. We have dropped our middle of night feeds, but Titus's oxygen monitor goes off numerous times during the night if he wakes up and starts kicking his foot (where the monitor is attached). Or, Titus will get his fingers around the canula and pull it out of his nose, and then his oxygen levels will sink and the monitors will go off. We have gotten his routine down - he tends to wake around 3-4am and stay awake for about 30-45 minutes. And, I truly believe the weariness leads us into emotional vulnerabilty. Satan loves to take a weak moment and turn it into an emotional breakdown.As I was having one of those emotional breakdowns in the car last week, I was led to this thought - "Do I want to go back to Egypt?" Now stay with me as I try to clearly explain it.
I thoroughly enjoy the Old Testament. But, I've never fully understood what was up with the Israelites after being freed from slavery in Egypt. Since I had the advantage of reading the entire story and knowing the outcome, I have tended to think "What a selfish, stupid group of people - You've seen some of the most incredible miracles from God and you stand there grumbling about the tiniest details". They had the very presence of God in their midst (pillar of fire by night, pillar of cloud by day), they had their immediate needs met, fresh food and water every day, and their clothes/sandals didn't even wear out. But even with all that, they wanted to go back to Egypt, to slavery, to what was familiar, routine, comfortable (as comfortable as slavery could be). And why? - because it was so predictable and they knew what to expect - they had 400 years of experience of knowing what type of life to expect. Wandering around in the desert for what should have been just a few weeks was definitely not in their comfort zone.
And, as I reflected on that, I realized how selfish that is - to want things always comfortable, to want routine, to want predictability, to not have to wander, to rely on daily provision and not my own doings. I've never considered myself an overtly selfish person (I'm sure there are people who would disagree - but they aren't getting this email), but I have come to realize my selfish thoughts of wishing things were normal, wanting to go back to my life 6 months ago, wanting a sense of normalcy is really just a selfish pursuit of wanting what I want when I want it and not relying on God plan. I've come to realize that the opposite of faith is not disbelief, but selfishness - believing in what I can see and want and possess instead of "being sure of what we hope for and certain of what we do not see (Hebrews 11:1)".
And, for the first time, I've come to understand the Israelites perspective. I can see how they were tired and weary and wanted to go back to what was familiar to them, even though it wasn't God's best - their selfish side told them it was at least routine and predictable and better than doing what they were doing. Even the memories of witnessing the incredible miracles of God tended to fade and pale in their weariness of wandering. And, just like in our own life, the highs/spiritual mountaintops of our past are just that - my past, not my daily bread. I can' t live a life based on what God did for me yesterday, I have to live my life based on what God is doing for me TODAY.
And, I now have a choice to make - do I grumble and complain because of events I cannot change, or do I claim the promises set before me that the "righteous are never forsaken (Psa 37:25)", that God "has a plan for me (Jer 29:11)", and that I have to "trust in the Lord with ALL my heart and lean not on my own understanding (Prov 3:5)". Please don't misread my intent - Titus is a blessing in our life, but the road is long, tough, and hard. And when I am tired, and the bills seem large, and the treatments seem uncertain and I don't see the progress in therapy that I would like to see, it's just plain hard to remember to choose to live for today. But I don't want to go back to Egypt - I want to lead my family to the promised land. And no where does it say that the road to the promised land is comfy, cushy, smooth, air-conditioned, and bug-free. (And, yes, for those of you raised in th 70's, I've been singing Keith Green's "So You Wanna Go Back to Egypt" - and I'm sure the rest of you are saying "who is Keith Green?")
Please pray for these items:
Next week will be a milestone week for Titus. He will turn 6 months old on Wednesday and next week will also mark the timeframe when he has spent more time at home than he has in the hospital. It is such a joy to have him home and integrate him into the Daily lifestyle. Titus is quite the trooper. He goes to church with us on Sundays and Wednesdays, goes on walks around the block with the boys (and Quita), goes out to eat with all of us, and has even made a few trips to the store. We always carry an extra oxygen tank around with us if he gets low, but having him on oxygen does not keep him tied down to the house. And, Titus got his first haircut last Saturday - we just had to trim up his curly hair a bit since he had developed quite a mohawk after it fell out on the sides (but stayed very long on the top). But check out the pics I've attached.
On Sunday, May 11, (Mother's Day), Titus will participate in Baby Dedication at our church. We will be so honored to stand there and dedicate our precious son, but also to pledge our continued support to raising him in a Christian family. Honestly, this baby dedication will be so different than the others we had participated in for Aidan, Noah, Tucker, and Cade since we know the life that Titus will lead is going to be drastically different from the other children standing up there with us. There are days we struggle when we see another 5 month old child who is able to hold up his head, turn to his father's voice and react in the way a child does that does not have the physical or developmental delays. But we know that Titus has been "fearfully and wonderfully made" and our love for him grows deeper every day.
On Monday, May 12, Titus will have a MRI / CT Scan done at Medical City. The MRI / CT Scan is being done for 2 doctors assessments. The ENT will be assessing Titus' ears so he can better determine if cochlear implants will be a "fit" for Titus. Secondly, the neurosurgeon will be checking the Dandy-Walker Variant (cyst at the base of brain). We had an appointment with the neurosurgeon several weeks ago, and she was encouraged at the growth and development of Titus head - it is growing upon the normal growth curve. Too little growth might indicate the brain is not growing, and too much growth might indicate a fluid buildup, but at this time there are no concerns and his head growth/circumference was right on track.
On Monday, May 19, Titus will be back in Houston at Dr. Feldman's for a checkup and day surgery on his eyes. It's still too early to determine the damage done to his eyes from the congential glaucoma. The optic nerve in his left eye was not fully developed, so there's not a lot of hope that there will be vision in his left eye. His right eye does not have as much damage, but does have some. We do feel there are times when Titus is concentrating and looking at something, but again, it's still too early to tell. Our prayer is that the pressure in his eyeballs are normal and that the 2 previous surgeries are providing the necessary drainage needed in the eye.
Becky and I would both admit that the last month has been very hard. Although Titus has consistently been home most of that time, the weariness of getting a full night's sleep is starting to wear us down. We have dropped our middle of night feeds, but Titus's oxygen monitor goes off numerous times during the night if he wakes up and starts kicking his foot (where the monitor is attached). Or, Titus will get his fingers around the canula and pull it out of his nose, and then his oxygen levels will sink and the monitors will go off. We have gotten his routine down - he tends to wake around 3-4am and stay awake for about 30-45 minutes. And, I truly believe the weariness leads us into emotional vulnerabilty. Satan loves to take a weak moment and turn it into an emotional breakdown.As I was having one of those emotional breakdowns in the car last week, I was led to this thought - "Do I want to go back to Egypt?" Now stay with me as I try to clearly explain it.
I thoroughly enjoy the Old Testament. But, I've never fully understood what was up with the Israelites after being freed from slavery in Egypt. Since I had the advantage of reading the entire story and knowing the outcome, I have tended to think "What a selfish, stupid group of people - You've seen some of the most incredible miracles from God and you stand there grumbling about the tiniest details". They had the very presence of God in their midst (pillar of fire by night, pillar of cloud by day), they had their immediate needs met, fresh food and water every day, and their clothes/sandals didn't even wear out. But even with all that, they wanted to go back to Egypt, to slavery, to what was familiar, routine, comfortable (as comfortable as slavery could be). And why? - because it was so predictable and they knew what to expect - they had 400 years of experience of knowing what type of life to expect. Wandering around in the desert for what should have been just a few weeks was definitely not in their comfort zone.
And, as I reflected on that, I realized how selfish that is - to want things always comfortable, to want routine, to want predictability, to not have to wander, to rely on daily provision and not my own doings. I've never considered myself an overtly selfish person (I'm sure there are people who would disagree - but they aren't getting this email), but I have come to realize my selfish thoughts of wishing things were normal, wanting to go back to my life 6 months ago, wanting a sense of normalcy is really just a selfish pursuit of wanting what I want when I want it and not relying on God plan. I've come to realize that the opposite of faith is not disbelief, but selfishness - believing in what I can see and want and possess instead of "being sure of what we hope for and certain of what we do not see (Hebrews 11:1)".
And, for the first time, I've come to understand the Israelites perspective. I can see how they were tired and weary and wanted to go back to what was familiar to them, even though it wasn't God's best - their selfish side told them it was at least routine and predictable and better than doing what they were doing. Even the memories of witnessing the incredible miracles of God tended to fade and pale in their weariness of wandering. And, just like in our own life, the highs/spiritual mountaintops of our past are just that - my past, not my daily bread. I can' t live a life based on what God did for me yesterday, I have to live my life based on what God is doing for me TODAY.
And, I now have a choice to make - do I grumble and complain because of events I cannot change, or do I claim the promises set before me that the "righteous are never forsaken (Psa 37:25)", that God "has a plan for me (Jer 29:11)", and that I have to "trust in the Lord with ALL my heart and lean not on my own understanding (Prov 3:5)". Please don't misread my intent - Titus is a blessing in our life, but the road is long, tough, and hard. And when I am tired, and the bills seem large, and the treatments seem uncertain and I don't see the progress in therapy that I would like to see, it's just plain hard to remember to choose to live for today. But I don't want to go back to Egypt - I want to lead my family to the promised land. And no where does it say that the road to the promised land is comfy, cushy, smooth, air-conditioned, and bug-free. (And, yes, for those of you raised in th 70's, I've been singing Keith Green's "So You Wanna Go Back to Egypt" - and I'm sure the rest of you are saying "who is Keith Green?")
Please pray for these items:
- Titus oxygen levels - we are testing him at lower levels of oxygen, but as soon as he gets off oxygen, the sooner he gets off the monitors. As soon as he gets off monitors, the better we will all be sleeping. Please pray his lungs will continue to strengthen and develop.
MRI/CT Scan on May 19 will provide the doctors the information they need to make a plan for Titus - Medicaid - we have filled out more forms, had more interviews and should be hearing soon that Titus will be approved. As soon as he is approved for Medicaid, his therapy sessions can resume.
- Strength for Titus neck - he has incredible dexterity with his hands and fingers, but we are really working with him to hold his head up.
- Rest for Paul and Becky
- Ministry Opportunity - We will be facilitiating a Growing Kids God's Way class starting in June. We've always started a class in the summertime and have had so many express an interest that we realize our parenting ministry and lives go on. Please pray that God will bring the right families into this class.
Praise Update
- Transforming Your World Update - as I mentioned in one of our emails, our church "left the building" a few Sundays ago and went out into the community to serve on Sunday morning. We had 7 couples and their kids go with us down to Medical City Dallas to provide food and encouragement to the families/staff in the PICU and NICU. We had such an incredible time sharing with families, praying with them, and the kids made crafts for the kids in the hospital (or invited the kids who were up there with their families to make crafts with them). Thank you so much for your prayers for that day. There are so many incredible testimonies throughout the entire church of things that happened on that day.
Monday, April 14, 2008
My Arms Are Too Short To Box With God
Titus had eye surgery in Houston this morning. After sedating him, they tested the pressure on his eyes, and the levels were high. The doctor immediately went into surgery from that point. Last month, when they did surgery for the glaucoma, they put a channel on the top of his eye. With today's surgery, he installed the channel on the bottom of his eyes and installed a silicon plate at the base which will allow for future testing/relieving pressure.
Dr. Feldman noticed significant nerve damage in his left eye and does not give much hope that Titus will have much vision out of the eye. There is damage in his right eye also, but not as much. As for now, it's really too early to know the extent or depth of damage to his eyes, but we have been somewhat preparing ourselves for this message. We can tell that Titus responds to light, but he does not track objects with his eyes and his pupils don't seem to dilate.
I'll be honest - it's a bit devasting to know your child can't hear, and now to learn there's a very strong possibility that he can't see. But I know that none of this takes God by surprise. As Becky was speaking at her Mom's Group this past week, she shared how God specifically chose her to be Titus' mom knowing all the special needs that he would have. And raising a child with special needs takes time, it takes effort, and frankly it's tiring. But it's the path God has chosen for us and for Titus. And, as my title states, my arms are too short to box with God.
It's all about acceptance and submission. I've been teaching the book of Acts on Sunday morning - and a few weeks ago, as our class was discussing the conversion of Saul, I brought up the point that the Bible always tells us to accept Jesus as Lord. It does not state to accept Him as saviour. See the difference is, if Jesus is the Lord of my life, then He is my master, He is in control, He knows and shapes my life, and I must be submissive to him. Accepting Jesus as Lord puts me under his submission and control. But in our world today, we just want to accept Him as Saviour. But what does that mean - that we are saved from Hell. Jesus certainly does that, but if Jesus is just my Saviour (providing my life insurance) but never my Lord, then I'm going about my way, living my life for myself relying on His Saving Grace, but never submitting to His Lordship. Jesus has to be My Lord AND My Saviour. But, in Paul's numerous letters, he never states to confess Jesus as Saviour, but Jesus as Lord. It's why Paul wrote in Phillippians "every knee shall bow, and every tongue shall confess that Jesus Christ is Lord, to the glory of God the Father..." (Phil 2:10-11).
So, I claim Matthew 11:28-29 today "Come unto me, all you who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me; for I am meek and lowly in heart, and you will find rest for your souls..." I am tired, I am weary, but I submit to the yoke and am learning to find rest in Jesus, my Lord.
Please pray specifically for these matters:
Dr. Feldman noticed significant nerve damage in his left eye and does not give much hope that Titus will have much vision out of the eye. There is damage in his right eye also, but not as much. As for now, it's really too early to know the extent or depth of damage to his eyes, but we have been somewhat preparing ourselves for this message. We can tell that Titus responds to light, but he does not track objects with his eyes and his pupils don't seem to dilate.
I'll be honest - it's a bit devasting to know your child can't hear, and now to learn there's a very strong possibility that he can't see. But I know that none of this takes God by surprise. As Becky was speaking at her Mom's Group this past week, she shared how God specifically chose her to be Titus' mom knowing all the special needs that he would have. And raising a child with special needs takes time, it takes effort, and frankly it's tiring. But it's the path God has chosen for us and for Titus. And, as my title states, my arms are too short to box with God.
It's all about acceptance and submission. I've been teaching the book of Acts on Sunday morning - and a few weeks ago, as our class was discussing the conversion of Saul, I brought up the point that the Bible always tells us to accept Jesus as Lord. It does not state to accept Him as saviour. See the difference is, if Jesus is the Lord of my life, then He is my master, He is in control, He knows and shapes my life, and I must be submissive to him. Accepting Jesus as Lord puts me under his submission and control. But in our world today, we just want to accept Him as Saviour. But what does that mean - that we are saved from Hell. Jesus certainly does that, but if Jesus is just my Saviour (providing my life insurance) but never my Lord, then I'm going about my way, living my life for myself relying on His Saving Grace, but never submitting to His Lordship. Jesus has to be My Lord AND My Saviour. But, in Paul's numerous letters, he never states to confess Jesus as Saviour, but Jesus as Lord. It's why Paul wrote in Phillippians "every knee shall bow, and every tongue shall confess that Jesus Christ is Lord, to the glory of God the Father..." (Phil 2:10-11).
So, I claim Matthew 11:28-29 today "Come unto me, all you who labor and are heavy laden, and I will give you rest. Take my yoke upon you, and learn from me; for I am meek and lowly in heart, and you will find rest for your souls..." I am tired, I am weary, but I submit to the yoke and am learning to find rest in Jesus, my Lord.
Please pray specifically for these matters:
- Healing and recovery for Titus - the doctor expects to release him to go home tomorrow (Tuesday, April 15)
- Rest for Becky and her mom who are at the hospital with Titus & safety while driving home from Houston
- Titus is still on oxygen - the pulmonologist is concerned that he's not been showing much improvement. He sent us to the cardiologist last week who did rule out any heart issues. And, I might add, how awesome is God who works out the fine details allowing us to get into a pediatriac cardiologist with less than a days notice - that just does NOT happen with these types of specialists! Please pray for continued strengthening and healing in Titus lungs so that we can wean him off of oxygen.
- Titus vision - we may not know the extent of the damage for months, but we are praying that Titus will have vision in his right eye.
- Ministry opportunities - as a family, our lives are being opened up to a whole new team of therapists and specialists. We have ECI in our home several times a week assisting with therapy, along with numerous weekly doctor's appointments. Each person we come in contact with is an opportunity to minister to them and show them God's love - even as a family. Most are amazed when they walk in, see 2 boys working on home school, see 2 3-yr olds doing blanket time, and the only thing Becky is having to restrain is the dog (who can be a little overprotective at times). With all that is going on, we still have a peaceful household (ok - it can get a little loud with 5 boys - but it is a joyful noise!)
- Medicaid - we have Medicaid coverage from Dec 1, 2007 through Feb. 29, 2008. But this doesn't cover the first 2 weeks Titus was born and in the hospital. We have applied for retroactive coverage - this is mainly for assistance on one bill, but the bill is $1500 and we would love to have some Medicaid coverage on it. At the same time, we are in the midst of filling out other applications for continued coverage. Dealing with all the forms and phone calls can be a full-time job (I spent 45 minutes today being sent to 4 different phone numbers and people before I finallly found someone who could answer my question). There are times I think it would be easier to hang up and just pay the bills, but then I get the bills and decide that I can sit on hold for another 45 minutes.
- Tranforming Your World - our church has an awesome ministry opportunity on Sunday, April 27. The church is leaving the building and getting out in the community (ain't that an awesome idea!). Our class is going to take food to the NICU and PICU at Medical City Dallas and pray with families in the waiting room. The director of the class I teach (Scott & Jill Dillashaw) have spent as much time at Medical City with their children as we have with Titus - and we thought it would be an awesome opportunity to give back to other families who are going through what we have been through. Please pray that God will use that morning to minister to families who are going through some hard times with their children. While we are spending time with the parents, our kids are going to be making cards for the kids in the hospital.
One last thought - so many of you come up (or write or call) and let us know that your children continue to pray for Titus everyday. Please tell your children how thankful we are for them and that God hears their prayers and He is answering them in a mighty way. I know some kids may think when they hear about today's report that God may not be hearing their prayers - but assure them that He is. We serve a Mighty God who is in Control!
Wednesday, April 2, 2008
A Father's Love
Titus had surgery this yesterday morning and he is being released this morning to come home. Praise the Lord! They had told us it would only be one night in the hospital, but generally with Titus, an overnight procedure turns into a week-long stay. We are thrilled beyond words that he can come home today. He is doing fantastic and had a good night last night.
The doctors performed several procedures on him yesterday. Dr. Peters, the ENT, cleaned out his ears, drained all the fluid, put in tubes, and then the did the ABR to test his hearing. The results from the ABR were consistent with the test results back in December - he has profound hearing loss in both ears.
Dr. Genecov, the cranio-facial surgeon, then removed the jaw distraction devices (and of course, we asked to keep them!). He was pleased with his jaw and bone growth. There was a little bit of infection that had set in on one side of his jaw, so he cleaned that up. But Dr. Genecov mentioned that his lungs were still a bit stiff - and stated the RSV really did a number on his lungs - so we will be keeping him on oxygen when we come home.
It was a bit surreal to walk back into the PICU after spending 33 days here in Jan/Feb. But, it was also comforting to know most of the nurses, respiratory therapists, physician assistants, and doctors. They have all been stopping by to check on Titus - and all comment on how much he's grown and how good he looks. We are so thankful for the caring medical staff here at Medical City and their passion/concern for Titus.
When Becky and I were married, Becky states she learned about a love of choice - and everyday she made the choice to love me. I'm thankful that she does - and that God has done the same. God's mercies are new every morning, and He continues to love me each day.
When Aidan, our oldest, we born 11 years ago, I learned Father's love - a love that was so overpowering for such a tiny, helpless infant. And as he has grown, I've learned how that father's love means that I discipline and train my son so that he will grow into the man that he is suppose to be. And, the same goes with God, He disciplines the son that He loves.
When we adopted Tucker and Cade, I learned the love of an adoptive father - to love a child not of my blood, but of my heart; to love a child that didn't immediately love me back; to love a child that was chosen to be part of my family. And, as I stood in front of the judge the day we finalized their adoption, and the judge asked me "will you love this child forever - because what you are doing is irrevocable", I realized that yes, I will love this child forever - and the same goes with God's love. His love for me is irrevocable and He promises to love me forever.
And now, with Titus, a child born with so many defects, I've learned a love that overlooks the faults and loves the child. When we were in the NICU back in January, one of the nurses described the babies as "broken babies". I didn't care for the term much at first, but since have come to embrace it. Because I've learned that we are all broken. We all have faults, we all have issues, we all have handicaps that need constant care, attention, and sometimes intensive surgery and therapy. My love for Titus over looks the defects, the brokenness, the handicaps. I see my son, my little treasure in a jar of clay - so fragile, and yet so beautiful. And, I realize that God sees me the same way - His love for me overlooks my faults and He provides healing in only the way that He can.
As it says in 2 Cor. 4 "But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. . . Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
Please pray for these things this week.
The doctors performed several procedures on him yesterday. Dr. Peters, the ENT, cleaned out his ears, drained all the fluid, put in tubes, and then the did the ABR to test his hearing. The results from the ABR were consistent with the test results back in December - he has profound hearing loss in both ears.
Dr. Genecov, the cranio-facial surgeon, then removed the jaw distraction devices (and of course, we asked to keep them!). He was pleased with his jaw and bone growth. There was a little bit of infection that had set in on one side of his jaw, so he cleaned that up. But Dr. Genecov mentioned that his lungs were still a bit stiff - and stated the RSV really did a number on his lungs - so we will be keeping him on oxygen when we come home.
It was a bit surreal to walk back into the PICU after spending 33 days here in Jan/Feb. But, it was also comforting to know most of the nurses, respiratory therapists, physician assistants, and doctors. They have all been stopping by to check on Titus - and all comment on how much he's grown and how good he looks. We are so thankful for the caring medical staff here at Medical City and their passion/concern for Titus.
When Becky and I were married, Becky states she learned about a love of choice - and everyday she made the choice to love me. I'm thankful that she does - and that God has done the same. God's mercies are new every morning, and He continues to love me each day.
When Aidan, our oldest, we born 11 years ago, I learned Father's love - a love that was so overpowering for such a tiny, helpless infant. And as he has grown, I've learned how that father's love means that I discipline and train my son so that he will grow into the man that he is suppose to be. And, the same goes with God, He disciplines the son that He loves.
When we adopted Tucker and Cade, I learned the love of an adoptive father - to love a child not of my blood, but of my heart; to love a child that didn't immediately love me back; to love a child that was chosen to be part of my family. And, as I stood in front of the judge the day we finalized their adoption, and the judge asked me "will you love this child forever - because what you are doing is irrevocable", I realized that yes, I will love this child forever - and the same goes with God's love. His love for me is irrevocable and He promises to love me forever.
And now, with Titus, a child born with so many defects, I've learned a love that overlooks the faults and loves the child. When we were in the NICU back in January, one of the nurses described the babies as "broken babies". I didn't care for the term much at first, but since have come to embrace it. Because I've learned that we are all broken. We all have faults, we all have issues, we all have handicaps that need constant care, attention, and sometimes intensive surgery and therapy. My love for Titus over looks the defects, the brokenness, the handicaps. I see my son, my little treasure in a jar of clay - so fragile, and yet so beautiful. And, I realize that God sees me the same way - His love for me overlooks my faults and He provides healing in only the way that He can.
As it says in 2 Cor. 4 "But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. . . Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."
Please pray for these things this week.
- Continued recovery from surgery, especially his breathing so that we can wean him off of oxygen
- Continued strength and growth before his next surgery on April 14
- Peace and Calm for Aidan, Noah, Tucker, and Cade as they stay with friends and family while Titus is recouping
- Rest for Paul & Becky
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