Wednesday, December 30, 2009
Your prayers are appreciated.
Tuesday, December 29, 2009
Thursday, December 24, 2009
Last week he fell at work and hit his head. Since it was a Worker's Comp claim, they sent him to CareNow. After a week, his heading was still hurting, but he was released from the Worker's Comp claim and could now go to his own doctor. He went to have a CT scan done On Dec 22 and they detected a pressure buildup in his brain (initially they suspected a blood clot and several other things, but the final analysis was a frontal lobe bleed). They did another CT scan, checked him into the hospital for surgery. Surgery was yesterday at 2pm and was successful. They expect to spend a few days in ICU and hospital before being able to come home.
Proverbs 16:9 tells us "In his heart a man plans his course, but the LORD determines his steps." It was funny how in a few short minutes on Tuesday, all the plans we had made for the holidays changed. But what I noticed was how we responded. If we have learned anything over the last few years it's that God directs it all, God has a purpose in all things, and don't resist the flow when God leads (it's pretty futile).
So, enjoy the holidays, don't let the little (or big) changes rob you of your joy for the celebration of Christ's birth. Realize life is not what happens to you, but how you respond to it.
Have a wonderful Christmas Eve!
p.s. Praying for SNOW!!!!!
Wednesday, December 23, 2009
Ok, before you call PETA on me, this was her favorite place to hang in the house!
Tuesday, December 22, 2009
Friday, December 18, 2009
Monday, December 14, 2009
I looked at the cover and said, "No son, Santa's not on the cover".
Tucker looked at me, pointed at the picture, and stated "Yes, Dad - that's Santa".
I looked again and said, "No son, that's Barbara Bush".
But upon a second look, she kind of did look like Santa without the beard.
Wednesday, December 9, 2009
After the appointment, the dentist stated they have a typical "korean" mouth. When Cade heard this, he looked at me and said "Korea - how did he know?"
Sweet Cade - you make me laugh and smile! And I love that you are still color-blind at this age.
So, I just smiled back at Cade and said "Well, he's knew all about you when we brought you home."
Sunday, December 6, 2009
And of course, Titus had a major explosion when we stopped for lunch. He did this to me on the way up there - Becky and the boys were inside McDonalds and I was changing Titus in the car. You would think after 12 years of changing diapers I should have it down, but no - each child has to decide to outdo the other.
This was a major nuclear attack. If it could be bottled, I am convinced it would stop the war in Iraq (or Afghanistan - whichever one Obama is putting his energy to this week). I used every available wipe in the car - and then was calling for Aidan to bring me paper towels from the restaurant. There was poo from his elbows to his toes - dripping out his jeans, on the seat of the car, side of the car, and even on the road. And the smell cleared out the parking lot in a manner of minutes. I believe you get the picture.
We had to stop every two hours to give Titus his eye drops. One drop of medicine had to be followed by an ointment 5 minutes later. But each "5-minute stop" turned into 15-20 minutes. After awhile, it just became a comedy of errors. Between Nashville and Memphis, Becky and I had a long discussion with Aidan and Noah and explained to them all the events of the week. A lot of tears were shed in the car. As hard as it was to hear the news this week, I found out that it's even harder to tell your boys.
We rolled into town around 11:30pm, and Vanessa, our night nurse, met us at the house. The next thing I knew, it was 8am, and Lisa, Titus' day nurse walked in with fresh donuts.
Lisa spent the morning with Titus allowing Becky and me to take Aidan and Noah to church and pick up Tucker and Cade. Lisa took the above picture - and you can see how happy he was to be home and back in his familiar surroundings. He has had a good day and sat in my lap watching football this afternoon.
This week will bring a series of follow-up appointments as Titus has his eye evaluated and other regular appointments and therapy. His breathing and lungs still sound a bit "wet" and he has some clear congestion that we are suctioning, but you can tell he's happy to be back home.
Friday, December 4, 2009
I came into his room this morning around 6am. Becky was in bed with Titus. And Titus was off the BiPAP and on a high-volume nasal canula. He was awake and happy. Becky told me that he was continuing to get irritated in the night with the BiPAP and even after giving him some mild sedation, he would never settle, so they made the decision to try the canula again. His respiratory rates are back to normal levels (yesterday when they did the canula his rates were still very high).
At this moment, he is fussy while the nurse is giving him a xopenex treatment - and this is very normal for him.
The plan this morning is to wean him down on oxygen through the day to see how he does and resume normal feeds. We still don't know if they will medically transport him home - it's still an option - but if he continues to show this improvement, they may still put him with us in the car. At this point, it's hour by hour.
But, he is much better this morning - and I know it's due to the prayers of God's people.
Titus has been fussy most of the day, but we have found out the reason why. He has a corneal ulcer in his left eye which can be painful the dr say. They are starting him on drops and then want us to see his opthmalogist as soon as we get to Dallas. In the last 2 hours, he has finally calmed down and stopped fussing. We have also started him back to his normal feeds and he is doing good.
We got the portable oxygen tank filled up, but Titus is currently on .75/liter of oxygen right now and has not de-SATed all day.
Becky has been to Columbus to pick up Aidan and Noah (and Buttercup). Yes, we sent two boys away and we are getting two boys and kitten back. (I know what you are thinking, but remember, we already know we are crazy. ) Aidan has been asking for a cat for the last 2 years, and we need a good mouser at the house since the mice are back for Christmas (Quita, the golden retriever has already caught two in the house and dropped them at our feet - lovely).
I may not get to update till we get home, but your prayers and notes of encouragement have carried us through the last few days. We still have some heavy-duty decisions to make. As we have said to the doctors, we did not get the answers we were expecting, but we got new information that will help us with his care. We plan on leaving early in the morning and driving straight through to Dallas - so please keep us in your prayers all day tomorrow.
Thursday, December 3, 2009
Growing up, my dad could fix anything. Now, it may not look pretty and he may have used a lot of duct tape, but he could fix anything (and still can).
I think that's an inherent quality in being a dad - when something is broken, it's your job to fix it. When the icemaker stops working, the boys call me. When the car acts up, Becky calls me. (well, actually, she still calls her dad). When a toy breaks, the boys bring it to me. And my job is to fix it. I like this part of being a dad. (And, ok, I will admit that the boys will also ask PeePaw and Poppy to fix a few thing too - it's also part of being a grandfather).
But when your child is so sick and you can't fix it, you feel helpless. When you have to explain to your other boys that Titus is sick and dad can't make it better, you feel like a failure. When Titus wakes up and is frightened and starts to cry and looks at me with fear in his eyes, all I can do is put my face close to his and whisper "It will be ok" even though I do not know if it will.
I think all my prayers today have been begging my heavenly Father to just fix it, make it better, let him breathe. And I know my Father can - but his repair may not be in my timing and He may have a greater reason in the brokeness. Romans 8:18 states "our present sufferings are not worth comparing with the glory that will be revealed in us. " And that is my prayer tonight for Titus - resting in knowing that all of this has a plan and purpose.
Titus was taken off the ventilator this afternoon. He did not respond well to a high-flow nasal canula, so they put the BiPAP on his face. The BiPAP is a large mask that covers his mouth and nose and has to create a tight seal around his face to work properly. He doesn't like it. He has had the BiPAP before. He didn't like it then, and he doesn't like it now. When he wakes up, he fusses himself till he is so tired that he falls back asleep. I've mentioned numerous times that Titus is a very content child, so for him to fuss is uncharacteristic for him. But, as his dad, I know it's because he's scared. He doesn't know what is going on. And when I put my face next to his and he opens his eyes and looks at me, it breaks my heart since all I can do is hold his hands down to keep him from trying to pull it off his face. He's gotten quite adept at grabbing the hoses and ripping them off.
His chest x-ray this afternoon shows some lung collapse on the upper right side. You add to that the information we found out yesterday that he doesn't really move air out of his bottom lobes of both his lungs, he still doesn't have a lot of lung capacity.
He will stay on the BiPAP tonight - and then they will re-assess tomorrow. They have discussed having him medically transported to Dallas and if he goes back on the vent, this would speed up that decision. Honestly, we would prefer this - it would be the quickest and safest way to get Titus back to Dallas. But they would also like him to leave the hospital the way he came - which was in the car. We just aren't sure how he will do on a 15 hour car-trip home. We will need to make some decisions tomorrow since I need to be back at work on Monday. And, Becky and I believe that the rest of the boys need to be back together at home. Please continue to pray for us as we make the immediate decisions that need to be made, along with the long-term decisions we are still faced with. Our trip to Cincinnati has provided us with new decisions and new information (not the information we wanted to hear) and now, we just want to get back home.
Please know that wanting to be home is not a reflection on Cincinnati Children's Hospital - they have been incredible in listening to us as the parents on how to best care for Titus. As a teaching hospital, they make their rounds in the mornings and evenings, and each time, they have asked us to be included in the discussion on Titus situation and care and have listened and heeded our suggestions on his care.
Thank you for the emails and notes. We have sat and read them to each other and they are a balm to our soul. Thank you for your prayers - we can feel them. And for those who have been taking care of us and our boys (Michael and Beth here in Cincinnati, Eric and Roxie with Aidan and Noah in OH, and Marti and David with Tucker and Cade back in Dallas), you have been our pillars of support this week. It has been a peace to know that our boys are being cared for and that we have had a wonderful place to stay.
When we breathe, we take in oxygen into our lungs which gets carried through our bodies and comes back into our lungs as Carbon Dioxide (CO2) that is exhaled. Most of us maintain an oxygen saturation of 100% through our normal breathing and sleep. When your oxygen saturation drops below a certain percent, it means that oxygen is not being carried to all parts of the body. The lower it drops, the less your body is getting the oxygen it needs. Because of Titus breathing issues, we always have him on oxygen through his nasal canula and the oxygen he receives supplements his breathing to keep his SATs up. At night, Titus sleeps with a pulseoximeter attached to his foot which measures his heart rate and oxygen saturation. When the SATs drop below 90%, the alarms go off. Many times, Titus drops to the low 80's for a few seconds and then he brings himself back up or we wake him up a bit and his breathing kicks back in.
With that being stated, last night, Titus was deSATing down to the low 30's and 20's. A few times he went down to 6. Each time, a team of 4 nurses would come rushing in and begin to bag him to keep him breathing and get his SATs back up.
Generally when Titus is on a ventilator (which is a tube running down to lungs that is breathing for him - or assisting his breathing depending on how low the settings are), he fights the vents and will do his bronchial spasms. When he spasms, his lungs clamp down and he just stops breathing and turns a nice shade of blue.
By taking him off the vent, it should stop the bronchial spasms (since it has in the past) and they can wean him off sedation which will wake him back up. Our prayer this morning is that weaning him off will go smoothly and that he will maintain. The sooner he is off the vent and sedation, the sooner he returns to a normal state, the sooner we can be released and get home.
I will keep the blog and facebook updated throughout the day.
Becky and I so appreciate the prayers and emails over the last day. We both got some sleep last night even with all the hustle/bustle going on in his room (they also have a sleeping room that we alternated sleeping in). But as we talked about this morning, we could feel the peace overcome us last night. The song "somebody's praying, I can feel it. Somebody's praying for me" keeps rolling through my head. It is a comfort to know people are praying for Titus and for us.
Wednesday, December 2, 2009
Titus had all his scopes done this morning. In layman’s terms, they ran a flexible scope down through his lungs, a rigid scope down his esophagus, and an endoscopy of his esophagus and stomach.
This took about an hour, after which all three doctors came into a consultation room to tell us the results. And it was not news we wanted to hear. I could write a long list of issues they found, but it basically comes down to this. Titus has two obstructions to his airway that obstruct his breathing – specifically when he is asleep. And Titus’s lungs are not moving air like they should. The bronchi are very narrow or closed and when he breathes, oxygen is not getting to his lower lungs and he is not expelling Carbon Dioxide like he should.
The diagnosis is grim. The obstructions are not repairable and there is no treatment or medicine that can repair his lungs. Since this is the only baseline they have, they believe his lungs were born this way – and they cannot tell if it’s getting progressively worse, but the fact he is not expelling CO2 affects a lot of other areas in his body.
We have been presented with two options: a tracheotomy with a ventilator that will breathe for him to assist in expelling the CO2. This would be a permanent. It may prolong his life span some, but they do not know. However, having a vent will change his lifestyle (and ours) as we know it. It does not need to be done immediately – and they recommend it should be done in Dallas since you have weeks of trach/vent therapy and care to learn how to care for him.
The other option is to do nothing and let Titus continue as he is.
The doctors cannot make the choice – it is a decision we have to make. Either way, they do not feel his life expectancy would be passed his teens. Either way, one strong infection could easily wipe him out.
After two years of being in and out of hospitals and meeting with numerous doctors, we have never had to deal with news like this. No one has ever discussed life expectancy nor have we had to hear such devastating news. When we learned he was deaf, we were discouraged, but we knew there was so much he could still do. When we learned he was blind, we were discouraged, but knew there was so much he could still do. But to learn his lungs are irreparable and that his body is continuing to worsen because of the CO2 buildup and that there’s not much they can do . . . well, it just knocks you off your feet. But as Becky said through her tears, this surprises us, but is not a surprise to God. He knows, He cares, He comforts, He provides, He heals.
This morning before he went back in the OR, Titus was happy and playing. Before they took him away, I put my face in front of his and he smiled and put his hands on my face like he always does. They allowed us to walk with him all the way back into the OR, and Titus was happy the whole way.
And now, he is back in the Pediatric ICU, on the vent, and heavily sedated as they let him recover from the procedures this morning. He is De-SATing even on the Vent and just pulled his IV out. The plan is to keep him on the vent till tomorrow then take him off the vent and see how he does. But considering how he is doing now, we will see. I anticipate it being a very long night.
Here are our prayer requests:
At this point, we are ready to be home and have all our boys back under one roof. It's a 15 hour drive, but if God opens up a way for Titus to be careflighted to Dallas, that would be wonderful.
Becky and I need wisdom on future decisions. The trach/vent does not need to be done immediately and they recommend it be done in Dallas (but we need to get home first).
And we all need rest.
Since we had 4 hours before the next appointment, we went to the mall. I know you may think we are crazy, but since the hospital waiting rooms are filled with sick people, it's much healthier to keep him away from them - so off to the mall we went (and he was kept safe, warm and isolated from all contact in his stroller. It also allowed Becky and I to have a nice meal.
When we got back, we had 3 consults: the GI, the ENT, and the pulmonologist. Each one was very thorough in examining his charts and asking us questions. The last doctor spent 90 minutes with us and walked us through the results of the CT Scan. After he completes his bronchioscopes today, they will be able to tell us more of what they are seeing and thinking, but they are finding out a lot about his lungs and airway. It was also noticed that Titus had not been signed up for a sleep study, so with a few pulled strings, Titus was admitted to the hospital for a sleep study that night.
We have had sleep studies before, but this one was much different since it was in the controlled environment of the hospital. And, since they really wanted to see what he would do, they took him off oxygen while he was asleep - and the bells/alarms starting going off. We generally jump to get his Oxygen SATs back up quickly, but in this case, they wanted to see how Titus would respond. He would bring himself back up - but then drop again (and drop very low.). Becky was with him and it was driving her crazy to see this go on - but we knew they needed to get an accurate picture. After an hour, they put his oxygen back on, but it was a rough night for Becky in the hospital.
As I was driving back last night, one of my favorite songs was on the CD I was listening to - and the words were so apt. "His Eye is on the Sparrow" is so fitting for how I feel. And it brings great comfort to know that if God watches over the sparrows, he certainly is watching over my Titus today. What a peace it is to know that Titus is being cared for by the Great Physician.
Monday, November 30, 2009
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.
Tuesday, November 24, 2009
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
Saturday, November 21, 2009
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
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
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.
Monday, November 9, 2009
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.
Friday, October 30, 2009
We found out a few weeks ago that Titus' case was reviewed and he was approved to be a candidate. And we found out last week that we have a date for the evaluation. They will do a 4-day evaluation with a team of doctors looking at the entire breathing/swallowing/airway issue. After the evaluation, they will decide if he would be a candidate for surgery. We go to Cincinnati on Nov 30. Your prayers will be greatly appreciated.
Titus has been doing great the past few weeks, but he has had increase in de-sats during the night. He has learned to high-five, and his new favorite toy is the sit-n-spin. We put him on and hold him, then spin him back and forth and he just laughs outloud (which is music to our ears).
Wednesday, October 28, 2009
On Sunday, I told him I was taking his older brothers shopping for his birthday gift. And this is how our conversation went.
Cade: Do you know what I want?
Dad: Why don't you tell me?
Cade: I want 6 things cause I'm turning 5
(not sure where that came from but I have learned to never try to figure out the logic of a 4 yr old).
Dad: Tell me something you would like
Cade proceeds to list of the items he saw at the store. And then states, "Dad, I think I should go with you to make sure you don't forget"
Dad: Cade, I won't forget.
Cade: Did you write it down? I think you will forget.
Dad: Cade, I won't forget.
Cade: Maybe you should call me when you get to the store. Do you know our number - it's 972
Dad: Cade, I KNOW our home phone number
Cade: I still think I should go with you.
Needless to say, he stayed home while we shopping. When we go home, he beelined to me and asked "did you get what I told you?"
Dad: I'm not telling you.
Cade: Did you wrap it? What paper did you wrap it in?
Dad: Cade, you are just going to have to wait.
So Tuesday morning, he came down to kitchen to find his presents wrapped on the table - and then had to wait till dinner to open them. But the sheer joy in his face and his gratitude was just a thrill to watch.
As I put him to bed, I told him the story of how he met us and how we brought him home. He listened ever so intently to his story. And I find it hard to believe at times that his precious, curious, funny, stubborn little boy is the same frightened and tired child we brought home 3 1/2 years ago. He is a perfect complement to his brothers. And I love how he talks non-stop when he is alone with you. I love his attention to the smallest detail. I love his hearty laugh while watching a movie. I love watching the innocence in his eyes.
And, as it goes with every birthday for Tucker and for Cade, I say a prayer for his birth mom. I pray for her comfort and peace in knowing that she made the right decision when she chose life for her boy and my son.
Cader-tot - love you so much.
Thursday, October 15, 2009
Thursday, October 8, 2009
Titus' nurse, Lisa, will be at the house today and tomorrow with him and I know that both of them can't wait to see each other. It will be so good tonight to go to sleep with all my boys and my wife back under one roof.
Wednesday, October 7, 2009
Tuesday, October 6, 2009
Becky stated that Titus really needs to poop. They have upped his Miralax, but he is getting a little cranky (don't we all when we need to . . . ok, maybe that's too personal).
Our prayers today is that his lungs will continue to clear, his body will strengthen, and he will poop. And please pray for Becky - these are long days and nights at the hospital. She is such a blessing to the nurses and RT's. Yesterday, the nurses asked her to talk to another family who has needs very similar to Titus. My amazing wife shows so much grace to all she comes in contact with.
Monday, October 5, 2009
When I arrived at lunch, Becky said "Say his name." I called out to him before I neared his bed and he turned and started looking for me. As I bent down to rub noses, he smiled, and then lifted his hands to touch my face. That's my precious boy!
And, since Becky has had so much time on her hands at the hospital, she is finally on Facebook. She is learning all the news from her facebook friends!
Sunday, October 4, 2009
Our dear friend Marti spent the morning with Titus so that Becky could come to church and teach our parenting class. Becky brings so much more practical wisdom to my teaching that I really don't like teaching without here. She then spent the rest of the morning at church volunteering with Tucker and Cade so they could have some Mommy time.
We hope by Tuesday Titus (and Becky) can come home.
Thanks for the prayers and support.
Saturday, October 3, 2009
Friday, October 2, 2009
Thanks for the prayers and support - will update more as we know it.
Will update more as we know it.
Thursday, October 1, 2009
We will know more tomorrow.
Becky called and they have him stable in the ambulance on the way to the ER. I'll update more when we know more.
And to top it off, I parked my car in the front of the house since the ambulance had blocked the driveway, and now my car won't start. I just have to laugh - I will not be defeated, I will not be moved, I will count it all joy, my light and momentary troubles are achieving an eternal glory that far outweighs them all.
Tuesday, September 29, 2009
We so appreciate the prayers. Although Becky and I are on Tamiflu, Aidan, Noah, Tucker and Cade are not - but so far, no one else has shown any symptoms and all seem to be healthy. Becky and I are just very tired (more Becky than me).
Secondly, Becky and I would appreciate your prayers as we have been teaching "Parenting with a Plan", an 8-week series at church. We have been leading the couples through teaching basic character qualities and have had great attendance. But we so want these couples to truly grasp the importance of biblical parenting. We can see by the questions they are asking that the couples are working on things at home, but our prayer is they grasp the long-term aspect - that parenting involves having a plan and takes work, consistency, commitment and constant fine-tuning. We have several more weeks of class, but it just wasn't the same teaching class without Becky by my side last week since she stayed home with Titus.
Sunday, September 27, 2009
I took Titus in the house, laid him down in his bed, his hands reached out and touched the sides, and he smiled and laughed. That smile always melts my heart. We did breathing therapy, and then fed him. He fell asleep during the feeding and slept all night long. He's been fever free for over 24 hours now, and except for his cough, you wouldn't know he has the flu. He is back to playing, cooing, and being content (except when he coughs).
Thanks for the prayers. We look back and again see how God led us at the right time to take him in, and had the right people who are familiar with his background in the right place. We are so grateful for our doctors who provide incredible care and support.
Saturday, September 26, 2009
The main concern is his breathing. He is sounding a bit raspy so they have put him on a steroid on his lungs and are doing breathing treatments every 2 hours. He is not running a fever and they have put him back on regular feeds. We don't expect to come home today.
Becky stated that by the time they moved Titus to a room, the ER was completely full, the waiting room was full, and people were even standing outside. God truly was watching over Titus to have a nurse have the foresight to put his name on the list for a room when they showed up (which is another reason we always go to Medical City since they know him so well). Becky stated there were 4 code blues last night - in our months as the hospital, we may have heard only 1 during the day.
We appreciate the prayers and support - I'll keep the blog or facebook updated throughout the day as we know more.
Friday, September 25, 2009
We will know more over the next few hours as they run a few tests. Titus is awake, happy, and not running fever at the moment.
I'm home with the rest of the boys to maintain our Friday night tradition - pizza and a movie and keep their sense of normalcy going.
After shots, I took them out to my parents to spend the evening, went to the pharmacy, then the bank, then to get a haircut. By the time I got home, Becky was whipped. Titus had been restless, but finally relaxed and rested for a few hours. We put him to sleep in our bed last night, and he slept all night - no de-sats, no crying, no fussing. We are praying today the Tamiflu kicks in for him and he will begin to feel better. Most of the doctors are stating that the cases they have seen are mild and lasting around 5 days - and today would be day 3. Our prayer is that we can manage him at home without having to take him to the ER or hospital. Thanks for all the prayers and support.
Thursday, September 24, 2009
Wednesday, September 23, 2009
Other than that, he's been sittin up some in therapy - he props himself up with his arms and sat that way for a minute and half the other day. And, he's developed this little giggle when you sit him on your lap and spin him around. As soon as you complete one rotation (and he laughs), he looks up at you and smiles and waits for you to do it again.
It's hard to believe he will be in two in a 6 weeks.
Monday, September 21, 2009
Becky convinced me this would be "family fun" and although a bit skeptical at first, it was quite a hoot. ECD has certain rules and etiquette to follow: boys must ask the girls to dance, boys must escort the girl to and from the dance floor, and you can't dance with the same girl two times in a row. Since this was a "learning session", Becky and I were out there with everyone else. But it seemed like the times I was out there, it was one of the dances where you changed partners every few steps - and I kept having to dance with elementary age girls (which I'm sure would get me arrested in some countries). Aidan was having a great time, but Noah was the one who was absolute resolute that he was only going to watch and play Monopoly with a friend. But after a little coaxing, Noah was out there and pretty soon was asking girls to dance without prompting from his mom.
One of the fun things about the evening was to see the number of high school kids there (probably around 50) that were having fun, laughing, dancing, and being extremely courteous to each other. Now, if I could only learn the difference between my left and right, first couple and second couple and what a "hay" is, I might get the hang of it.
Friday, September 11, 2009
I was in Montvale, NJ eight years ago working at the KPMG offices as a consultant. Montvale is just a few miles outside of New York City. I had flown in the day before and remember as we drove out of Newark airport on what a beautiful clear day it was. The view of the World Trade Centers was so clear and vivid that morning that we all commented on it in the car. After flying out of Newark for several weeks, the view of the Manhattan skyline had become familiar. Little did I know that the skyline would never be the same again.
That Tuesday morning eight years ago was another beautiful, crisp Fall day. The offices had a wall of TV's in the reception area and a tv in the break room that were always on. I remember hearing the first report, then standing there watching as the 2nd plane hit. At that point, all work stopped, every tv in every conference room was turned on, and I stood side-by-side with people who had family, friends, and co-workers that worked in Manhattan or the World Trade Centers. People were frantically trying to call but the phone lines were down or were jammed. The office slowly cleared out and me and my co-workers were left there watching as the tragedy continued to unfold.
I drove into Manhattan a few days later when the bridges were re-opened. The smoke was still rising, Times Square was eerily quiet, missing posters and makeshift memorials were everywhere. For the first time that I remember, people in NYC would look deeply into your eyes as you walked by - no one seemed to be rushing around in a hurry - everyone seemed to be searching for someone.
Each year, I remember. And I don't want to forget. I don't want to forget how people came together to pray. I don't want to forget the feeling of national pride. I don't want to forget how people were open and willing to share stories and show their emotions. I don't want to forget the people who gave their lives for our country. I don't want to forget the victims in this horrific crime.
Wednesday, September 9, 2009
Thursday, September 3, 2009
Wednesday, September 2, 2009
We will stop in Springfield, MO to pick up Aidan and Noah who went to with Meemaw and Peepaw to Branson for a few days, then spend the next couple of days playing in St. Louis before making the final trek to Indiana.
And, Titus stye/bump on his eye popped yesterday, relieving the pressure and swelling. He already looks so much better!
Tuesday, September 1, 2009
But, my main reason for posting is to request prayer for Titus on the trip. He has been incredible over the past month (except for dermatology issues). His breathing has improved tremendously - in fact, he's down to 1/8 on oxygen and there are times we just take it off altogether (but keep him on the monitor). He's maintaining his oxygen sats longer and longer.
He does have a bad (and I mean glaring-third-eye) stye on his left eye. His lower eyelid is swollen and it looks like it could erupt at any minute but hasn't. He went to the doctor yesterday who wants to observe it a little longer, but can do surgery to remove once we get back from vacation if it continues.
So, we will appreciate your prayers as we drive to Indianna for family camp. This is our favorite weekend of the year with friends. The boys are besides themselves with excitement and Becky and I are looking forward to spending some time with good friends. So we are off to zip, blob, fish, and climb (and enjoy some cooler weather).
Friday, August 28, 2009
Tuesday, August 18, 2009
And you know you're a bit old when you are actually looking FORWARD to getting new glasses since we all know my arms have gotten way too short.
Two weeks ago, after getting off the plane from India, I went to pick up my new glasses. The technician told me it would take at least 2 weeks to get use to the new lenses. And after 5 days, I have to agree. I find myself "searching" for focus and then locking in once I find it. But, I amazed at the clarity of things that I was missing before.
And this has led me to thinking about my own focus on things: how nearsighted is my world? It's easy to get into the trap of only looking at those things in my immediate area and concern. It's easy to have a selfish view of the world. It's easy to only focus on the one child in the family with special needs and to forget their are 4 other boys who also have needs.
Dear Lord, May I view the world as you see it - a world of hurt and opportunity, a world of pain and joy, a world where there is so much need and you have blessed me with so much I could give, a world outside of my self. Remind me to just not focus on the little things right in front of me, but to also see all that surrounds me.
Wednesday, August 12, 2009
Let's just say, it was bit surreal hearing American folk music considering the surroundings.
The office is convinced they are going to get us out of the building today so we can sight-see and go shopping. We'll see how that goes.
Tuesday, August 11, 2009
From the moment we stepped out customs, it was a sea of people. There is a certain relief when you see your name on a card being held by taxi service to take you to your hotel. Once in the car, the traffic, even late at night, amazes me. The lines on the road mean nothing – they are just lines on the road. People are walking in the median on the freeway, rickshaws are cycling on the shoulder of the freeway with anywhere from 1 to 8 people inside, stop signs and traffic lights are ignored. People drive whatever speed they feel comfortable with. If you need to pull across traffic, there’s no need to wait for an opening in traffic, they just drive into oncoming traffic and wait. If you need to get around a car, just drive into the oncoming lane of traffic to get around. To an outsider, it may seem like chaos, and yet, traffic moves, horns honk, but there are no accidents. Maybe because I was jetlagged, I didn’t care, but even today, I sat there motionless and let the driver do the driving.
As chaotic as the city can be, the moment we pull into the hotel compound, the world changes. After driving through the gates, the noise and smells of the city seem to immediately stop and you are greeting with quiet and the smell of lemongrass and sandalwood. Someone opens my car door and escorts me through the calm pools and gardens to the lobby. The front doors are opened and the cool air of the lobby slaps you in the face. I try to keep my jaw from hitting the floor (acting like I check into world-class 5-star hotels all the time), but my mind is reeling with opulence, cleanliness, and beauty of this place.
Since most of our India office supports work in the UK, they tend to work UK hours. We have showed up both mornings at 10am and even still, we are the first people in the office. Most people show up between 11 and 12 and work to 7 and 8pm. I also realize the commonality of all our offices globally. All of our offices utilize an open-office concept. There are very few offices, and very few walls.
Power outages occur often – at the hotel and office. Every place has backup generators that kick on, but let’s just say, when you are in the bathroom and all the lights go out for 1 minute, you just learn to stay where you are at. They always kick back on after a minute or two.
The drive to and from the office lets us see a bit of Delhi. The basic things I have noticed are no zoning, no parking lots, and farm animals in the city. It’s not uncommon to see wild pigs, dogs, cows, and horses roaming around. I’ve been told there are monkeys around, but have yet to see them. You look up and see beautiful high-rise apartments and office buildings, but when you look at the base, you see the tin lean-to’s where kids are running around and raw sewage runs through the shacks. Construction is everywhere in Delhi. They have told us how so much has boomed in the last 5 years and that property values have shot up 400%. Since the cost of living in the city is high, many of our workers live a ways out, but they have taxis pick up every worker and bring them in to work every day and take them home every night. They are considered a preferred provider since they do this and use air-conditioned taxis. It’s basically a car-pool service picking up to 6 people, but logistically is a nightmare to manage.
The dichotomy between the hotel and the city strikes me. I know we are told to “live in the world, but not of it”. Living in the hotel is quite, peaceful, calm, beautiful, and a safe haven. But I can’t work there, and I can’t stay there (I would like to stay there, but I think I would get to fat and happy being waited on hand-and-foot). We have to leave the comfort zone and go into the world. We have to see the poverty, feel the heat, smell the city, and work among the people. We have to stop being served and serve others. As Christians, you need the safe haven for retreat from the world, for worship, for fellowship, but you can’t stay there. You have to go out into the world, make a difference, and work. Matthew 29:19 “Therefore go . . . “.
Sunday, August 9, 2009
During the game, Aidan turns to Cade and says, "You are so unpredictable."
To which Cade replies "I am not dedictable".
Of course, we all start laughing, and Cade then says "I"m gonna hang you on the wall with nails."
And then Tucker adds, "Just like Jesus".
That's made me laugh all day long.
After 20 hours, I have finally made it to Delhi and the hotel. We are staying at a phenomenal hotel. The gardens and pools alone make this place spectacular (and I've only seen it in the dark).
It should be a fast and furious week here, but will be great to come back to the hotel and rest in comfort.
Friday, August 7, 2009
After what seemed like 30 minutes of getting shoes on and getting scooters out of the garage (side-tracked by taking the garage bins out to the street for pick up on Friday morning), we finally started on our walk.
Tucker and Cade whizzed by us, amazing us with their agility and balance. One of our neighbors drove down the street and waved, and we kept walking, enjoying the gentle breeze of the summer evening.
A few seconds later, the same neighbor drove back by and pulled over.
"I've been meaning to come over and talk to you - how do you feel about Medical City Dallas?"
Since most of Titus' doctors are at Medical City and we have spent literally months there for the last 21 months, we answered "love it".
And then she told us that her husband, our neighbor - Bill, had just been diagnosed with leukemia and had been checked into Medical City for chemotherapy and treatment.
As Becky gave her information on Medical City and a friend's number to call who has recently gone through this, she stopped and prayed with her.
And that's when it hit me on timing - a few minutes earlier or later and we would have missed her on the street. And that's when you know, God's timing is always perfect. He's never late - He has set the appointments of life where we have a chance to be a witness, to be a minister, to show we care.
And now that we know, we have the responsibility to pray and to assist. As I told her, anytime day or night, knock on our door if you need something. Vanessa may answer if she's there, but do not hesitate to call on us. And, we told her we would pray and I would like to make that request of you also; I ask that you pray for Bill and Cindy as this new, unexpected journey has taken them down a path they weren't prepared for.
On another note, Noah just got home from camp. I asked him what was the first thing he wanted to do when he got home (thinking he would say "take a nap"), but he said "Dad - what do you think - I'm gonna take a shower!" I'm glad he will have accomplished that before I get home. But he was ecstatic and bubbling over with excitement about the fun he had at camp.
Titus has had a good week. His stander and new chair are doing wonders for him. Many of you also saw my posts on Facebook this week that our day nurse, Lisa, fell down the back stair case at the house on Wednesday. She did not break in any bones, but she is still in pain and very, very sore. Lisa is "one of the family" and when she hurts, we hurt. Please continue to pray for her healing and pain relief.
Last of all, I head out to India tomorrow for a week of work. I have absolutely no idea what to expect from this trip, but I'm sure it will be incredibly eye-opening for all the senses. I have to say, that as a young kid growing up in a small south Texas town, I never dreamed I would have a career that would take me all over this world.
Monday, August 3, 2009
"I'm ready" Noah stated. He popped out of bed, already dressed.
Why am I not surprised that he slept in his clothes last night.
He came downstairs and read the newspaper with me while fixing his pop-tart and giving me time to drink one cup of coffee.
I look at my 11-year old, second-born son. He is getting so tall and yet still maintains that child-like innocence. He towers over his friends, and can spend ours discussing the details of all 6 Star Wars, or how to build anything with Legos.
"Go tell mom good-bye, and let's put your stuff in the car"
He runs off to snuggle with mom in bed and then we put his suitcase and sleeping bag in the car.
The ride to the church is mostly quiet. I provided him with a quick verbal lesson about how to roll-up his dirty clothes and put them back in his suitcase, along with a reminder to hang his towel up to dry and to please "PLEASE" (for the sake of the rest of the campers) take a shower everyday.
As we arrive, we stop the car and pray.
If there is one thing I want my boys to know as they grow up, it's that their dad prays for them. And that they hear their dad pray in their ear, specifically when they are facing something new or different. We did it Friday night before Noah walked out on stage for his program and this morning, before we got out of the van, we did it again.
"Father, watch over my son this week while he is at camp. I ask for safety and protection, but I also ask you show him great and might things through the word of God this week. Remind him to reach out to those looking for a friend, help those who need assistance, look for ways to serve when the need arises, and have fun. And, remind him to take a shower everyday - just cause he's swimming twice a day doesn't keep the boy clean. Thank you Lord for a boy who steps up, goes outside his comfort zone to try new things, and is a friend to all."
With Noah gone this week, and with Ashley, Morgan, and Leighton back home with their family, it's going to seem very quiet with only 4 kids in the house. And, Tucker and Cade are spending the night at MeeMaw's and PeePaw's, which only leaves Aidan and Titus tonight. It's going to be very, very quiet.