What a busy week it has been. Last Tuesday, Becky called me at work to let me know that our nurse would not be able to go to Cincinnati Childrens with her due to the sudden death of her father-in-law. Our heart broke for her since we know how much she loved and respected her father-in-law - please continue to lift up Lisa and her husband Boz during this time.
On Wednesday, Becky spent a majority of the day on the phone with Medicaid and at 4:45pm was finally approved for all our travel.
Thursday was a fun day spent with family for Thanksgiving. And as soon as they left, the boys started hauling all of Christmas out of the attic and closet. We got 3 trees up - but not decorated - so there's still a lot of Christmas to put up when we get back. But Tucker and Cade were so surprised to get up on Friday morning and see the big 12 ft tree in the foyer.
On Friday morning, Becky and Aidan got up and went shopping at 5am - in all of years of marriage, she has NEVER done Black Friday shopping and I had no idea what possessed her to get up and tackle it, but she did. Friday evening, we began packing the van and early Saturday morning, we took off for Cincinnati. Aidan and Noah are with Becky, Titus and me, while Tucker and Cade stayed in Dallas with family and friends (who are spoiling them rotten).
We drove to Nashville on Saturday, and then on to Cincinnati on Sunday. We met our dear friends at the Creation Museum (which is totally awesome - and empty on Sunday afternoon). After touring the musueum and dinner, our friends took Aidan and Noah to their house in Wooster, OH and we drove to another friends house here in Cincinnati where we are staying this week.
This morning, we drove to Cincinnati Children's and had our first appointment with the geneticist. We thoroughly enjoyed meeting her and she was delightful with Titus. Our next appointment was an hour later with the anesthesiologist for our consult for the rest of the week. He spent 90 minutes with us taking all of Titus history and thoroughly documenting everything. We feel very comfortable that they will take care special care of Titus tomorrow.
So, that's all the detail - but here's the rest of our week. We have to be at the hospital at 7am in the morning for Titus CT Scan. Since the CT scan is of his lungs, and his lungs need to be fully inflated, they will more than likely intubate him - which is one of the issues that Titus has with his lungs - he doesn't like to be intubated and when they extubate him he does a bronchial spasm and it can take awhile to bring him back out. Please pray that he will come out of anesthesia easily - since this seems to always be very difficult for him to recover from. That afternoon, we have another consult with the three specialist who will be scoping him on Wednesday.
On Wednesday, Titus will go back to the OR and be put under for the next phase. Three different specialists (ENT, Pulmonlogists, and GI) will perform various scopes on his lungs, GI tract, etc. At the end of all of that, they will run a probe down his nose which will have to be there for 24 hours. He will spend the night in the hospital on that night. On Thursday, once everything is checked out, he will be released, and we can prepare for our trip home. We plan on driving home on Friday and Saturday. If Titus is doing good, will make the trip one day, but we do have hotel reservations in case we need to stop and give him a break.
Next week on Wednesday, the entire team of doctors will meet to review their findings and determine if Titus is a candidate for airway reconstruction. They will call us afterwards to let us know.
Most people have asked "why Cincinnati Children's?" But the answer is quite easy. The team of specialists are THE experts in aerodigestive issues and airway reconstruction. The ENT created the surgery and people come from all over the world to be seen by this team of doctors. When they reviewed Titus medical records, they approved Titus as a candidate - and so we are here.
We appreciate all the prayers and notes of encouragement that we have been receiving. It brings us great peace to know that Titus (and our entire family) is being prayed over during this time (especially since we are all spread out in Dallas and Ohio). We let each doctor know that they are being prayed for as they work on our precious child. I would also appreciate your prayers for my job this week as it's difficult for me to not be checking email every 5 minutes, and there are some major reports they are produced this week that I generally do and have had to relinquish to others to back me up this week. I know they can get it done, but others are not so sure (and not to understanding why I can't be on all the conference calls this week).
Titus is doing great. He's been laying here next to me laughing and babbling. He's even been off of oxygen for the last hour and kept his SATs up in the high 90's the entire time. He has been great with all the doctors - happy and alert and showing his personality. And, he's been very content considering all the different hands that have been on him today.
I'll post more tomorrow.
Monday, November 30, 2009
Tuesday, November 24, 2009
UPDATED: Prayer Request
UPDATE: We received the approval today and they are wiring the money. Thanks for the prayers.
I posted a few weeks back that we have been approved to go to Cincinnati's Children's Hospital for a 4-day evaluation for an airway reconstruction for Titus.
Becky and Titus will leave on Saturday, Nov 28 to drive to Cincinnati. Aidan and Noah will be going with her along with Lisa our nurse. Aidan and Noah will be staying with some friends in Ohio while Titus goes for evaluation. I was originally going to go, but after some prayer and discussions, we believe that having Lisa on the trip will be a much bigger help than me. I'll post more updates about the upcoming trip.
But here is our prayer request for this week.
Titus was approved for the Medically Dependent Children's Program (MDCP) last year. Being MDCP means Titus has Medicaid. Medicaid has some wonderful programs - one of which pays for any mileage/travel that Titus has to do. But, this program is incredibly time consuming. Becky literally spends hours each week on the phone with them.
Since November 5, Becky and Cincinnati's Children's Hospital has been calling and working on the travel for this trip. I cannot even begin to count the hours on the phone she has spent over the last 3 weeks. Each day, they ask for another form, another signature, another piece of paper which they didn't ask for they day before. Or, they state they have not received the fax.
So here we are several days before leaving, and they have still not approved the travel. Becky was in tears last night. Based on how the program is run, they have to approve and pay for any travel BEFORE it happens and not after. So, if it's not approved prior to Saturday, then we will be paying for the entire trip.
With this week being a holiday week, it really needs to be approved today or Friday. We would sincerely appreciate your prayers that everything will come together today.
I posted a few weeks back that we have been approved to go to Cincinnati's Children's Hospital for a 4-day evaluation for an airway reconstruction for Titus.
Becky and Titus will leave on Saturday, Nov 28 to drive to Cincinnati. Aidan and Noah will be going with her along with Lisa our nurse. Aidan and Noah will be staying with some friends in Ohio while Titus goes for evaluation. I was originally going to go, but after some prayer and discussions, we believe that having Lisa on the trip will be a much bigger help than me. I'll post more updates about the upcoming trip.
But here is our prayer request for this week.
Titus was approved for the Medically Dependent Children's Program (MDCP) last year. Being MDCP means Titus has Medicaid. Medicaid has some wonderful programs - one of which pays for any mileage/travel that Titus has to do. But, this program is incredibly time consuming. Becky literally spends hours each week on the phone with them.
Since November 5, Becky and Cincinnati's Children's Hospital has been calling and working on the travel for this trip. I cannot even begin to count the hours on the phone she has spent over the last 3 weeks. Each day, they ask for another form, another signature, another piece of paper which they didn't ask for they day before. Or, they state they have not received the fax.
So here we are several days before leaving, and they have still not approved the travel. Becky was in tears last night. Based on how the program is run, they have to approve and pay for any travel BEFORE it happens and not after. So, if it's not approved prior to Saturday, then we will be paying for the entire trip.
With this week being a holiday week, it really needs to be approved today or Friday. We would sincerely appreciate your prayers that everything will come together today.
Monday, November 23, 2009
Swinging
We have talked about putting Titus in the swing outide - and since it was a beautiful Fall day here in Dallas, Becky, Lisa (our nurse) and the boys put the baby swing up for Titus. I think the pic says it all.
And unfortunately, John the Baptist (the fish Tucker named) spent way too much time in the wilderness and we found him floating upside down in the eel's lair yesterday. Fortunately, he was returnable, so John the Baptist Jr is now swimming along and doing quite well in his new digs.
Saturday, November 21, 2009
Naming of the Fish
Tucker ran errands with me this morning. And since we had to purchase some RO Water at the Fish store, we couldn't come home without buying a new fish for the fish tank. Since the beautiful Bicolor Angel I purchased last week was eaten by the eel this week (very expensive appetite that eel has), I decided to go for the much cheaper fish today.
Tuck picked out 3 green chromis and then cheered the guy on as he was trying to catch them. At one point, Tucker looked at me and said "Dad, he's too slow". To which I said, "No son, the fish are really fast."
As we are driving home, Tucker announces he has named the fish. So, I asked him, "What are their names?"
"Isaac, Mo, and John the Baptist!"
Great - I sure hope my son is not confused Biblical Characters andthe 3 Stooges. Isaac and Mo have adapted quite quickly to their new home, but John the Baptist is hiding in the corner. I'm not sure how to communicate to him that living low in the tank may prove too tantalizing for the eel. I guess we'll find out in the morning.
Tuck picked out 3 green chromis and then cheered the guy on as he was trying to catch them. At one point, Tucker looked at me and said "Dad, he's too slow". To which I said, "No son, the fish are really fast."
As we are driving home, Tucker announces he has named the fish. So, I asked him, "What are their names?"
"Isaac, Mo, and John the Baptist!"
Great - I sure hope my son is not confused Biblical Characters andthe 3 Stooges. Isaac and Mo have adapted quite quickly to their new home, but John the Baptist is hiding in the corner. I'm not sure how to communicate to him that living low in the tank may prove too tantalizing for the eel. I guess we'll find out in the morning.
Tuesday, November 17, 2009
The Man-Van
If you know me, you know I drive a mini-van. (sigh). It’s not the car of my dreams, but at this stage in my life, it is what I drive. After we had Titus, we knew we needed a bigger car, so Becky got her new Suburban, and I got her mini-van. It was not the 2-seater convertible I had hoped for during mid-life, but as Becky says, “whatever you drive has to hold at least 4 kids”.
So, I drive the “man-van” – (you gotta call it something to make it seem more masculine). Actually, most of the people at work are envious of the automatic side doors and seat warmers (at least that’s what I think). And, it’s a bit like a transformer when you fold all the seats down. It’s amazing what you can haul back there. In fact, our huge leather couch fit back there when we moved. But I digress.
Since I have the “man-van”, it never fails that when we go out to lunch at work, I drive (because who else has a car that seats 7 and they can watch a movie on the way). My co-workers drive Porsches, Land Rovers, Mercedes, Lexus, and Infiniti's that always seem to be too dirty or too small for them to drive. Most of the time, I only have 1 or 2 people in the car with me. But yesterday was different.
Now, I work with some of the greatest people in the world. If you know me, you know I’m not the smallest guy. I tip the scales at just over 200 (but am working on it.) But, out of all the guys I work with (except for our one resident health/fitness buff), I am the smallest. The other guys are . . . let’s just say MUCH bigger than me.
Yesterday was one of those days for the guys to go to lunch. And everyone decided to squeeze into my van. After everyone gets in, I fire up the van. And the message center starts blinking “2 tires – low pressure”. And the largest of all, says with a clueless but chipper voice “Paul, you got two low tires”. And I’m thinking “Duh, Sherlock – yah think?”
But, my discretion meter kicked in and I kept my mouth shut. And then we scraped the chassis as we were pulling out of the parking lot and I had absolutely no acceleration. I can hear the springs groining every time we go over a bump. The car must have known I was mistreating it, because when we arrived, it reached out and ripped one of the guy’s pants – at thigh level – very big hole that left his boxers flapping through. I have no idea how the car did it, but I it was at that point I realized, my car has an attitude and doesn’t like being mistreated.
So this is a note to the man-van. I promise not to overtax your payload at lunchtime by putting 4 guys in that weigh a collectively 1500 lbs. I promise to wash you once a week as long as you don’t reach out and tear anymore pants. And I promise get some new CDs for you to listen to since you are tired of Toby Mac. Thanks for getting me to work in one piece.
So, I drive the “man-van” – (you gotta call it something to make it seem more masculine). Actually, most of the people at work are envious of the automatic side doors and seat warmers (at least that’s what I think). And, it’s a bit like a transformer when you fold all the seats down. It’s amazing what you can haul back there. In fact, our huge leather couch fit back there when we moved. But I digress.
Since I have the “man-van”, it never fails that when we go out to lunch at work, I drive (because who else has a car that seats 7 and they can watch a movie on the way). My co-workers drive Porsches, Land Rovers, Mercedes, Lexus, and Infiniti's that always seem to be too dirty or too small for them to drive. Most of the time, I only have 1 or 2 people in the car with me. But yesterday was different.
Now, I work with some of the greatest people in the world. If you know me, you know I’m not the smallest guy. I tip the scales at just over 200 (but am working on it.) But, out of all the guys I work with (except for our one resident health/fitness buff), I am the smallest. The other guys are . . . let’s just say MUCH bigger than me.
Yesterday was one of those days for the guys to go to lunch. And everyone decided to squeeze into my van. After everyone gets in, I fire up the van. And the message center starts blinking “2 tires – low pressure”. And the largest of all, says with a clueless but chipper voice “Paul, you got two low tires”. And I’m thinking “Duh, Sherlock – yah think?”
But, my discretion meter kicked in and I kept my mouth shut. And then we scraped the chassis as we were pulling out of the parking lot and I had absolutely no acceleration. I can hear the springs groining every time we go over a bump. The car must have known I was mistreating it, because when we arrived, it reached out and ripped one of the guy’s pants – at thigh level – very big hole that left his boxers flapping through. I have no idea how the car did it, but I it was at that point I realized, my car has an attitude and doesn’t like being mistreated.
So this is a note to the man-van. I promise not to overtax your payload at lunchtime by putting 4 guys in that weigh a collectively 1500 lbs. I promise to wash you once a week as long as you don’t reach out and tear anymore pants. And I promise get some new CDs for you to listen to since you are tired of Toby Mac. Thanks for getting me to work in one piece.
Saturday, November 14, 2009
Happy Birthday Titus
Titus is 2!My little miracle is 2.
Like most of our family birthdays, we kept it very simple and low-key - pizza, movie, and ice cream (since Titus can't eat cake). And, he wasn't too sure about the few bites of ice cream tonight, but he was smacking his lips.
I just put him to bed and I can hear him in there laughing and squealing. Our nurse says he is playing with the angels. His little hands are up in the air - and he's reaching for his toys. When I bend down to kiss him goodnight and those hands will reach out and touch my face. He runs his hands all over my face and smiles. He knows who I am, He knows his father.
I just put him to bed and I can hear him in there laughing and squealing. Our nurse says he is playing with the angels. His little hands are up in the air - and he's reaching for his toys. When I bend down to kiss him goodnight and those hands will reach out and touch my face. He runs his hands all over my face and smiles. He knows who I am, He knows his father.
In the last few months, he is really using his hands more and more to explore his environment. I can always tell if he is at peace if his hands are relaxed and not clenched. He has made great strides in therapy - they are even putting him in a walker and he is pushing himself across the room with his feet. He responds - and that is what is so encouraging to us. He even shows a little attitude every now and then.
Dear Titus - you inspire me. You have taken me to highs and lows I never knew. You have taught me a depth to a father's love. I have had to learn to hold on so tight and to also let you go into the arms of a doctor more times than anyone should have to go. Your smile lights up my day. Your laugh always makes me smile. I love you so much. Your mother loves you so much. Your brothers will tell you they love you more! I am so glad you are my son.
Monday, November 9, 2009
Special Needs Parents
I apologize for not posting recently - it has been a very busy week.
Becky, Titus and I drove to Houston this weekend to attend and speak at the Growing Families International Conference. It was a Friday night/Saturday conference, so it ended up being a quick trip to Houston and back.
We thoroughly enjoyed our time seeing old friends and partners in the ministry. I delivered the "Raising Daniels in a Technological Babylon" seminar twice and Becky/I spoke on "The Funnel". We also hosted a lunch Q&A for parents of elementary age children. Once it was over, I realized I had been standing and talking for over 4 hours (and being the melancholy that I am, I was exhausted after that much talking). But, it is always fun to speak to parents who have a passion for raising godly children and we were excited to see the enthusiasm in their eyes. Plus, I have a blast teaching with my wife (she rocks).
Titus did good on the trip - although his sleeping in the hotel wasn't great. Like any child taken out of his safe and comfortable environment, he was a little uneasy at times, but as soon as we put him back in the car to go home, and he felt his car-seat, he knew where he was and just squealed and jabbered for 15 minutes.
We are finding that when we take Titus with us to these types of events, we always have parents who have special needs children that will come and talk to us. And I mention that to all who read since I want to let you know a few things about parents of special needs children.
It's hard work - plain and simple. Parenting any child can be hard work (we have lots of experience with that), but parents of children with special needs face a whole slew of other challenges - and that in itself can make life hard. So when they find someone else who can relate, you automatically feel a connection because they know you understand.
I wish I could convey that to others, but the main thing I would like to say is this - if you can show compassion to them, show it; if you do an act of kindness (even just opening a door with a smile), do it;
Tell them their child is beautiful - it is something they don't hear often (a worker at one of the fast-food restaurants told us how beautiful Titus was this weekend - and it was sweet music to our ears).
Don't talk about the child like he isn't there - respect that he is and can hear you. Realize that due to a childs needs, he may require my attention while you are talking with then. Please realize they are not ignoring you, but have to address his needs immediately.
Know that their schedule revolves around therapy, doctor's appointments, and other children - which sometimes does not lead to times of vacation or relaxation or fun family activities, but they still like to hear that they are invited to participate. If they can come, they will make every effort - it just requires some advanced planning. And realize, that families with special needs don't get invited to come over to someone else's home, their other kids may not get invited to birthday parties or other activities, or they may get invited but may not get to attend. For us, we strive to keep life as normal and fun as possible for the other boys - we make sure they know that Titus is part of our family and we include him in all of our activities - it just takes some extra work and effort.
And last point, know that the parents of special needs children have received an incredible blessing that has forever affected their lifes. I said one time that no one prays for a special needs child, they pray for a healthy child. But I can tell you that the last two years with Titus has changed me in a way that I never dreamed - and I can't imagine life without him.
BTW, Titus turns 2 on Saturday! I'll post more on that later.
Becky, Titus and I drove to Houston this weekend to attend and speak at the Growing Families International Conference. It was a Friday night/Saturday conference, so it ended up being a quick trip to Houston and back.
We thoroughly enjoyed our time seeing old friends and partners in the ministry. I delivered the "Raising Daniels in a Technological Babylon" seminar twice and Becky/I spoke on "The Funnel". We also hosted a lunch Q&A for parents of elementary age children. Once it was over, I realized I had been standing and talking for over 4 hours (and being the melancholy that I am, I was exhausted after that much talking). But, it is always fun to speak to parents who have a passion for raising godly children and we were excited to see the enthusiasm in their eyes. Plus, I have a blast teaching with my wife (she rocks).
Titus did good on the trip - although his sleeping in the hotel wasn't great. Like any child taken out of his safe and comfortable environment, he was a little uneasy at times, but as soon as we put him back in the car to go home, and he felt his car-seat, he knew where he was and just squealed and jabbered for 15 minutes.
We are finding that when we take Titus with us to these types of events, we always have parents who have special needs children that will come and talk to us. And I mention that to all who read since I want to let you know a few things about parents of special needs children.
It's hard work - plain and simple. Parenting any child can be hard work (we have lots of experience with that), but parents of children with special needs face a whole slew of other challenges - and that in itself can make life hard. So when they find someone else who can relate, you automatically feel a connection because they know you understand.
I wish I could convey that to others, but the main thing I would like to say is this - if you can show compassion to them, show it; if you do an act of kindness (even just opening a door with a smile), do it;
Tell them their child is beautiful - it is something they don't hear often (a worker at one of the fast-food restaurants told us how beautiful Titus was this weekend - and it was sweet music to our ears).
Don't talk about the child like he isn't there - respect that he is and can hear you. Realize that due to a childs needs, he may require my attention while you are talking with then. Please realize they are not ignoring you, but have to address his needs immediately.
Know that their schedule revolves around therapy, doctor's appointments, and other children - which sometimes does not lead to times of vacation or relaxation or fun family activities, but they still like to hear that they are invited to participate. If they can come, they will make every effort - it just requires some advanced planning. And realize, that families with special needs don't get invited to come over to someone else's home, their other kids may not get invited to birthday parties or other activities, or they may get invited but may not get to attend. For us, we strive to keep life as normal and fun as possible for the other boys - we make sure they know that Titus is part of our family and we include him in all of our activities - it just takes some extra work and effort.
And last point, know that the parents of special needs children have received an incredible blessing that has forever affected their lifes. I said one time that no one prays for a special needs child, they pray for a healthy child. But I can tell you that the last two years with Titus has changed me in a way that I never dreamed - and I can't imagine life without him.
BTW, Titus turns 2 on Saturday! I'll post more on that later.
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