Titus was released this morning from the hospital. But we've learned, just because the doctor says your are free to go, you still have to wait for your discharge papers. So, several hours later, Titus and Becky were home.
I took Titus and walked into his room. And the moment, I stepped in his room, he "leaped" in my arms. Literally, he jumped/moved/shaked. He KNEW he was in his room. He KNEW he was home. And the smile on his face said it all - "it's good to be home".
He took a great nap this afternoon - and so did Becky and I. She layed down on one sofa and I layed down on the other one - and we both believe a bomb could have gone off next door and we would have slept through it. It was good to have some restful sleep.
Thank you for all your prayers, notes, phone calls, and visits. We so appreciate your kindness to us.
In many ways, these hospital visits are memorials for us. I can't walk into the halls of Medical City without thinking of all the months we spent there. Every time I ride the elevator and it stops at the 4th floor (NICU) or 5th floor (PICU), memories flood back. Every time I see a family get on the elevator from one of those floors, and I see the emotion on their face, I remember. The long hours spent in the quiet rooms listening to the sound of the monitors, watching my son struggle for his life are thoughts that will never leave me. They are a memorial - a remembrance of a time where God showed me that He has a plan, He is always faithful, He will carry me through.
As you celebrate Memorial Day this weekend, I challenge you to find the memorials in your life - those times that are marked with memories that have shaped you into the person you are today. And I challenge you to share those memories with your children, with your friends, with your family. If we don't, then those memorials will lose their meaning.
Joshua 4:21-24 states "He said to the Israelites, "In the future when your descendants ask their fathers, 'What do these stones mean?' tell them, 'Israel crossed the Jordan on dry ground.' For the LORD your God dried up the Jordan before you until you had crossed over. The LORD your God did to the Jordan just what he had done to the Red Sea when he dried it up before us until we had crossed over. He did this so that all the peoples of the earth might know that the hand of the LORD is powerful and so that you might always fear the LORD your God.".
And last of all, remember our patriots who gave their life so that we may live free in America. May their memory never be forgotten, may their bravery be remembered, and may we tell our children that we live in a land of freedom because of the sacrifice of so many who were willing to serve, willing to fight, and willing to take a stand for what is right.
Showing posts with label Titus. Show all posts
Showing posts with label Titus. Show all posts
Saturday, May 29, 2010
Wednesday, April 28, 2010
Through the Cracks
If you live in Dallas you have probably been shocked and saddened about the little boy dubbed Wylie's Angel. For those of you outside of the area, let me tell about this horific story.
Several weeks ago, workers hired to mow a city park near Lake Lavon in Wylie, TX, found the body of a 6-yr old little boy. There were no signs of trauma, no identification, no missing child reports - no evidence to point to what happened.
The police released a composite drawing of the child to the press along with the news that the child had been g-tube fed. A few days later, they released information stating the child was deaf-blind. My heart broke when I initially heard the news, but as details were released showing the little boy had special needs the same as Titus, I became more and more emotionally involved in the story.
As the weeks have progressed, the little boy was identified and his grandmother has been arrested and charged with his death.
The details around his short life are heart-breaking. At one month of age, he began to experience seizures. He was diagnosed with Well's syndrome, diagnosed deaf-blind, was fed through a g-tube, and had no control of his arms/legs.
His parents divorced when he was quite young - and there have not been a lot of details. His father is in the military and although he had not seen his child in 2 years, he regularly paid his child-support.
At one point, the child had been admitted to a care facility for full-time care, but for reasons unknown, the mother checked the child out of the facility, and then left the child with his grandmother. The mother now lives in Oklahoma and the grandparents were living in an extended stay hotel in a suburb here in Dallas.
And those are the only facts that have been released.
As I have read these stories, I question "why?" Why did this happen? Why didn't this child and her parents/grandparents get the assistance/help he needed? How did this child fall through all the cracks in the system especially after he had been diagnosed and checked into a facility?
But deep down, I know some of the answers to my questions. And if I can convey anything to those of you who read this, I want to let you know this.
Life with a child with special needs is hard. There is no way you can ever know what a family goes through until you live through it yourself. It's emotionally draining, physically exhausting, and tough. Statistics show that a majority of marriages that have a child with special needs ends in divorce. And that just makes life all the more difficult for the parent who remains as the primary care-giver.
And to add to all the difficulties of care you provide, you have to navigate an incredibly difficult web of state and government services and insurance to get the assistance your child needs. It's not a one-call-takes-care-of-all type of situation. Some agencies are easier to work with (major shout-out to HIPP - Texas Health Insurance Premium Program) while others require HOURS on the phone EVERY WEEK providing the same repetitive information over and over. In the beginning, Becky and I spent hours on the phone being transferred from one office to another, from one social worker to another, waiting on hold for answers to our questions. And since you have to call during working hours, time spent on the phone takes away time at work or time you should be caring for your child.
There are still services we are finding out about. And there is a lot of misinformation about Medicaid and other state programs. The waiting list for most programs are YEARS - and while you are waiting, you are still responsible for care and costs. Even toys that are designed for your child are so expensive that most people can only afford to buy one a year.
And even once you are approved, you are still tending to the daily needs of your child and your family but also have to learn to bond/meld with a nurse/aide that may be assigned to your family.
At least, that's what we do. We have stated, we never want Titus to be a "houseplant" sat in the corner and ignored. We work with him, our nurses/aide works with him, his brothers play with him. And Titus responds.
But we know we aren't like other families. Some families can't afford the time on the phone to get to the right people to talk to. Some people are confused by the questions on the forms you have to complete (i.e. "how many chickens/livestock do you own?" - I kid you not - that is one of the questions). Some people don't want to ask for help. Some people are ashamed/embarrased by their child. Some people are depressed and tired from dealing with their child and can't handle anything more. Some people don't have a support system. Some people feel like they have no other options. Some people don't like to ask for help.
And some people abandon their child to die in a park.
I accept that we live in a broken, fallen world. But I also believe every life, every heartbeat is crafted by God and has a purpose. And this little boy needs to serve as catalyst for change that we (and I do mean all of us) need to open our eyes and make a difference to a family that needs help.
You may think there is nothing you can do, your effort would be too small, and you don't know how to help. Or maybe you feel uncomfortable (get over it - it's not about you), but let me tell you a few things anyone can do.
Several weeks ago, workers hired to mow a city park near Lake Lavon in Wylie, TX, found the body of a 6-yr old little boy. There were no signs of trauma, no identification, no missing child reports - no evidence to point to what happened.
The police released a composite drawing of the child to the press along with the news that the child had been g-tube fed. A few days later, they released information stating the child was deaf-blind. My heart broke when I initially heard the news, but as details were released showing the little boy had special needs the same as Titus, I became more and more emotionally involved in the story.
As the weeks have progressed, the little boy was identified and his grandmother has been arrested and charged with his death.
The details around his short life are heart-breaking. At one month of age, he began to experience seizures. He was diagnosed with Well's syndrome, diagnosed deaf-blind, was fed through a g-tube, and had no control of his arms/legs.
His parents divorced when he was quite young - and there have not been a lot of details. His father is in the military and although he had not seen his child in 2 years, he regularly paid his child-support.
At one point, the child had been admitted to a care facility for full-time care, but for reasons unknown, the mother checked the child out of the facility, and then left the child with his grandmother. The mother now lives in Oklahoma and the grandparents were living in an extended stay hotel in a suburb here in Dallas.
And those are the only facts that have been released.
As I have read these stories, I question "why?" Why did this happen? Why didn't this child and her parents/grandparents get the assistance/help he needed? How did this child fall through all the cracks in the system especially after he had been diagnosed and checked into a facility?
But deep down, I know some of the answers to my questions. And if I can convey anything to those of you who read this, I want to let you know this.
Life with a child with special needs is hard. There is no way you can ever know what a family goes through until you live through it yourself. It's emotionally draining, physically exhausting, and tough. Statistics show that a majority of marriages that have a child with special needs ends in divorce. And that just makes life all the more difficult for the parent who remains as the primary care-giver.
And to add to all the difficulties of care you provide, you have to navigate an incredibly difficult web of state and government services and insurance to get the assistance your child needs. It's not a one-call-takes-care-of-all type of situation. Some agencies are easier to work with (major shout-out to HIPP - Texas Health Insurance Premium Program) while others require HOURS on the phone EVERY WEEK providing the same repetitive information over and over. In the beginning, Becky and I spent hours on the phone being transferred from one office to another, from one social worker to another, waiting on hold for answers to our questions. And since you have to call during working hours, time spent on the phone takes away time at work or time you should be caring for your child.
There are still services we are finding out about. And there is a lot of misinformation about Medicaid and other state programs. The waiting list for most programs are YEARS - and while you are waiting, you are still responsible for care and costs. Even toys that are designed for your child are so expensive that most people can only afford to buy one a year.
And even once you are approved, you are still tending to the daily needs of your child and your family but also have to learn to bond/meld with a nurse/aide that may be assigned to your family.
At least, that's what we do. We have stated, we never want Titus to be a "houseplant" sat in the corner and ignored. We work with him, our nurses/aide works with him, his brothers play with him. And Titus responds.
But we know we aren't like other families. Some families can't afford the time on the phone to get to the right people to talk to. Some people are confused by the questions on the forms you have to complete (i.e. "how many chickens/livestock do you own?" - I kid you not - that is one of the questions). Some people don't want to ask for help. Some people are ashamed/embarrased by their child. Some people are depressed and tired from dealing with their child and can't handle anything more. Some people don't have a support system. Some people feel like they have no other options. Some people don't like to ask for help.
And some people abandon their child to die in a park.
I accept that we live in a broken, fallen world. But I also believe every life, every heartbeat is crafted by God and has a purpose. And this little boy needs to serve as catalyst for change that we (and I do mean all of us) need to open our eyes and make a difference to a family that needs help.
You may think there is nothing you can do, your effort would be too small, and you don't know how to help. Or maybe you feel uncomfortable (get over it - it's not about you), but let me tell you a few things anyone can do.
- If you see a family with a child with special needs - offer them a smile. Speak to the child even if you don't get a response. Never ignore the child or look away.
- Take the time to get to know them.
- Ask if you help (they may say no way - but keep asking). Ask questions like "how could I help you out on Tuesday mornings? (make it a specific time when you are available not just something general). Be willing to do their laundry, mow their lawn, clean their kitchen, run an errand, read their child a book, etc.
- Ask them if they can show you how to help care for their child so that they could have a few hours away or a date with their spouse.
- Give them a hug.
- Write them a note. Tell them you admire them for their dedication to their child. (Quick note to the unknown prayer warriors at The Heights Church in Richardson - you will never know how much your little notes to us every week mean to us - we have never met you personally, but the 2-3 notes we get every week lift us up).
- Find a special needs financial planner in the area and take the family to them - even pay for the consultation. We would never know some of the things we do if it had not been for TJ Kroehle and Mike DeGucci.
- Take them a meal or better yet, have them over to your house for a meal.
- Ask your church to have a special needs ministry or host a night-out for parents of special needs kids
- Realize that birthdays for their child can be hard - the day of their birth generally doesn't bring back happy memories. But recognize the child on their birthday - they probably won't have the special type of parties/celebrations that you would plan for your children for numerous reasons. And gifts/toys for the child are hard to buy. But once you know what type of stimuli the child needs in a toy - be on the look out for toys like that. Ironically, some of the best toys for Titus we have found at the pet store.
- Realize that child probably does not have friends his own age; doesn't get invited to parties; doesn't play t-ball, soccer; doesn't always have "cute" clothes or bows in their hair; doesn't have portraits taken. So make it a point to do those things - include the child - teach your own children to be comfortable and kind to a child with needs (not to point or ignore).
- If your child asks a blunt question such as "What's wrong with them?" - it's ok. For us as parents, it's a time to educate the child and show your child how to interact with my child. Don't turn your child around or apologize. Trust me - we are use to it - and we have learned how to answer the question. But also know that some parents have a hard time with that, so be willing to step in and state "I'm sorry - we are working on my child's blunt approach - but tell me about your son/daughter?"
- Volunteer at CASA - Court Appointed Special Advocates
- Get to know a social worker - they are underpaid, overworked, but can be a wealth of information.
- And last of all, pray. Pray for the child, pray for the family, pray for the marriage, pray that others will see this child as a blessing not a burden.
Friday, April 23, 2010
Friday, April 16, 2010
Don't Mess With Titus!
With 5 boys, we have a complete arsenal of weapons: cap guns, toy guns, airsoft guns, bb guns, bows & arrows, swords of all shapes and sizes. So, it was the natural turn of events that Titus would eventually join in the fray. The look on his face says it all . . . "Don't mess with Titus".
Thursday, April 15, 2010
Quick Update on Titus
Titus went to the doctor on Monday for a follow-up on his ear infection. His ears are clear of infection and there is no fluid buildup behind his left ear. Just by the way he was acting, we felt the antibiotics had cleared everything up, but it was good to have it confirmed.
With Titus, we have learned it's the very small things that are the victories in his life. The smile of recognition of a toy, the way he reaches out to touch me or leans over when I sit down next to him, the way he chuckles when placed in his bed, the open hand that reaches out to explore instead of a closed fist.
And I am reminded that's the slow and steady of repetition and therapy that mark the improvements we see. I was reminded of this verse today during some other discussions and it's very apropos for today.
Habakukk 2:3 (New Living Translation)
"But these things I plan won't happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, wait patiently, for it will surely take place. It will not be delayed."
I do have a vision that one day Titus will be able to sit unassisted, but it won't be this week, this month, and maybe not even this year. But I do have a vision.
I have a vision that one day he will use a walker to enable him some movement. He is working very hard at it and it will take a lot more work and stamina and patience, but I do believe.
And I have a vision that one day in eternity, I will see my son walking and dancing and singing and seeing all the glorious colors of heaven. As hard as it is to see my son trapped in the constraints of his earthly body, I know it's only temporary in the light of eternity.
With Titus, we have learned it's the very small things that are the victories in his life. The smile of recognition of a toy, the way he reaches out to touch me or leans over when I sit down next to him, the way he chuckles when placed in his bed, the open hand that reaches out to explore instead of a closed fist.
And I am reminded that's the slow and steady of repetition and therapy that mark the improvements we see. I was reminded of this verse today during some other discussions and it's very apropos for today.
Habakukk 2:3 (New Living Translation)
"But these things I plan won't happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, wait patiently, for it will surely take place. It will not be delayed."
I do have a vision that one day Titus will be able to sit unassisted, but it won't be this week, this month, and maybe not even this year. But I do have a vision.
I have a vision that one day he will use a walker to enable him some movement. He is working very hard at it and it will take a lot more work and stamina and patience, but I do believe.
And I have a vision that one day in eternity, I will see my son walking and dancing and singing and seeing all the glorious colors of heaven. As hard as it is to see my son trapped in the constraints of his earthly body, I know it's only temporary in the light of eternity.
Wednesday, April 7, 2010
Mirror, Mirror, on the Wall
Titus is finding himself in the mirror these days. And, they have been working on the word "Baby" with him. When we say/sign baby, we hand him his baby. He actually has two baby dolls, but as you can see, he prefers one over the other.
Monday, March 29, 2010
Busy Weekend
We had one of the busiest weekends. Normally, weekends around our house are pretty relaxed, but the last 72 hours were non-stop.
Friday night, Tucker had his first baseball game. He was SOOOOOO excited to get out there and play. He did a great job of listening to the coach. His team only had one practice due to rain and spring break, so they still have some basics to work on (for example, drop the bat and run to first base when you hit the ball - don't just stand there.) But the key thing was, he had fun! And he had huge cheering section there with his entire family, grandparents, uncle, and puppy in the stands.
Saturday, I had a deacon kick-off breakfast for our deacon mentoring process. I am excited about mentoring Brian R - one of the guys I've known for the last couple of years - and I will say our church has a great process for bringing on new deacons and training them on "through the dust" service.
Becky left Saturday morning with the boys and Ashley K. to take her 1/2 way back to Houston. She met Ashley's parent's in Buffalo, TX and then visited for awhile at the best bar-b-que spot in Tx. Titus stayed home with Nana until I could get home from breakfast.
After breakfast, I swung by the car wash to clean up Becky's suburban. We have the best carwash in McKinney that's cheap and provides a self-service vacuum spot. As I am vacumming the car out, the 30 mph winds we were experiencing Saturday slammed the door shut (along with the car keys and my phone inside), and then I heard click and all of the sudden I am locked out of the car at the carwash. There's nothing like standing next to your car at the carwash for 45 minutes explaining to everyone who drives up to use the vacuums that you locked yourself out of the car to teach you humility.
When I got home, I put Titus down for his afternoon nap. When he awoke, I took Titus to the mall to finish up some shopping for Becky's birthday. It was a fun little trip - just the two of us. I have always taken the boys out shopping at Christmas and birthdays, but this was the first time it was just me and Titus. He was quite talkative in the car and smiled at all the ladies in the mall.
Sunday was a whirlwind. I taught Sunday School, but we were a little late as we took time at breakfast for Becky to open her gifts. Then we went to Snuffers for cheese fries and hamburgers (basically, a heart-attack on a plate of artery cloggin cheese and grease - but hey, it was Beck's birthday). After lunch, we took Noah to FBC Allen for the Collin County Associational Bible Drill. He got a PERFECT score. I was so proud of him - he has diligently applied himself and studied all year. He has now qualified for the Texas State Bible Drill in a few weeks.
On the way back to the house, we had to stop and celebrate at Braums with some ice cream. We sat and laughed with friends from church while wolfing down more ice cream/fat that probably did more artery cloggin than necessary for one day (but now we had two things to celebrate).
Back at the house, we did a quick clean up in preparation for Moral Innocence class while watching the Baylor vs Duke game. Baylor did great -wished they would have won. I don't think I have seen so many Baptists on their knees in a long time.
We have 8 couples joining us for the next 8 weeks for Reflections of Moral Innocence. What a great class and great couples! We have taught all of these couples at some time over the last few years, so it's always a blessing to have them back in our home and see how they are progressing with their parenting skills.
So in a way, after such a whirlwind, it's kind of nice to be at the office sitting still today. I'm headed off to Denver for a few days this week and then I'm looking forward to the celebration of Easter this weekend.
Titus seems to be doing better, but we will have him checked out with the pediatrician this week to assure his ear infection is clearing up and the fluid behind his ear has gone away.
Friday night, Tucker had his first baseball game. He was SOOOOOO excited to get out there and play. He did a great job of listening to the coach. His team only had one practice due to rain and spring break, so they still have some basics to work on (for example, drop the bat and run to first base when you hit the ball - don't just stand there.) But the key thing was, he had fun! And he had huge cheering section there with his entire family, grandparents, uncle, and puppy in the stands.
Saturday, I had a deacon kick-off breakfast for our deacon mentoring process. I am excited about mentoring Brian R - one of the guys I've known for the last couple of years - and I will say our church has a great process for bringing on new deacons and training them on "through the dust" service.
Becky left Saturday morning with the boys and Ashley K. to take her 1/2 way back to Houston. She met Ashley's parent's in Buffalo, TX and then visited for awhile at the best bar-b-que spot in Tx. Titus stayed home with Nana until I could get home from breakfast.
After breakfast, I swung by the car wash to clean up Becky's suburban. We have the best carwash in McKinney that's cheap and provides a self-service vacuum spot. As I am vacumming the car out, the 30 mph winds we were experiencing Saturday slammed the door shut (along with the car keys and my phone inside), and then I heard click and all of the sudden I am locked out of the car at the carwash. There's nothing like standing next to your car at the carwash for 45 minutes explaining to everyone who drives up to use the vacuums that you locked yourself out of the car to teach you humility.
When I got home, I put Titus down for his afternoon nap. When he awoke, I took Titus to the mall to finish up some shopping for Becky's birthday. It was a fun little trip - just the two of us. I have always taken the boys out shopping at Christmas and birthdays, but this was the first time it was just me and Titus. He was quite talkative in the car and smiled at all the ladies in the mall.
Sunday was a whirlwind. I taught Sunday School, but we were a little late as we took time at breakfast for Becky to open her gifts. Then we went to Snuffers for cheese fries and hamburgers (basically, a heart-attack on a plate of artery cloggin cheese and grease - but hey, it was Beck's birthday). After lunch, we took Noah to FBC Allen for the Collin County Associational Bible Drill. He got a PERFECT score. I was so proud of him - he has diligently applied himself and studied all year. He has now qualified for the Texas State Bible Drill in a few weeks.
On the way back to the house, we had to stop and celebrate at Braums with some ice cream. We sat and laughed with friends from church while wolfing down more ice cream/fat that probably did more artery cloggin than necessary for one day (but now we had two things to celebrate).
Back at the house, we did a quick clean up in preparation for Moral Innocence class while watching the Baylor vs Duke game. Baylor did great -wished they would have won. I don't think I have seen so many Baptists on their knees in a long time.
We have 8 couples joining us for the next 8 weeks for Reflections of Moral Innocence. What a great class and great couples! We have taught all of these couples at some time over the last few years, so it's always a blessing to have them back in our home and see how they are progressing with their parenting skills.
So in a way, after such a whirlwind, it's kind of nice to be at the office sitting still today. I'm headed off to Denver for a few days this week and then I'm looking forward to the celebration of Easter this weekend.
Titus seems to be doing better, but we will have him checked out with the pediatrician this week to assure his ear infection is clearing up and the fluid behind his ear has gone away.
Thursday, March 25, 2010
Ear Infection
Titus went to our pediatrician yesterday and we found out he has an ear infection in his left ear. Today, he had a regularly scheduled appointment with our ENT who also confirmed the ear infection. Since the ear infection is in his left ear and that's the ear he has his cochlear implant, the fluid buildup could cause some other issues if not resolved quickly. Titus had tubes put in his ears over a year ago, but the tube in the left ear has fallen out, therefore allowing the fluid buildup.
We would appreciate your prayers for quick healing of this ear infection and that no other complications would ensue. As a last resort, they could go in and re-insert the tube in his left ear. While this is a very short, minimal risk type of surgery, it would require Titus to undergo anesthesia - and that's always an issue with Titus. The ENT has switched his meds to something more powerful and we will follow-up with the pediatrician in the next few days to check the progress. But I also know that our Heavenly Father can heal faster than the strongest antibiotics. Thanks for your prayers.
We would appreciate your prayers for quick healing of this ear infection and that no other complications would ensue. As a last resort, they could go in and re-insert the tube in his left ear. While this is a very short, minimal risk type of surgery, it would require Titus to undergo anesthesia - and that's always an issue with Titus. The ENT has switched his meds to something more powerful and we will follow-up with the pediatrician in the next few days to check the progress. But I also know that our Heavenly Father can heal faster than the strongest antibiotics. Thanks for your prayers.
Tuesday, March 16, 2010
Wheels are Off!
So many things happened last week that I am just now getting caught up. But one of the most exciting was for Tucker and Cade.
Last Monday, Becky's sister, Angela, was in town. She decided today was the day for Tucker to learn to ride his bike. (Now, you need to have a little back story - last time she was in town, she decided Cade needed to learn how to swallow a pill - and he ended up throwing up all over her when she stuck in his mouth). But Angela wouldn't let something like that deter her from her end result. She took off Tucker's training wheels, put him on his bike, and sent him down the street. Tucker was yelling "don't let go, don't let go" all the way down the street - and she had stopped way back. He took off like a shot and hasn't looked back since. We are now working on him stopping (instead of just falling off his bike like's he has been doing.
The next day, Cade announces he is going to ride his bike. Now, after puking all over Angela when she tried to teach him how to swallow a pill, I was very leery on how this one was going to go. And, since Cade is deaf in one ear due to his middle ear not formed correctly - it leads to some of his coordination and balance issues.
But, Cade, surprising us all, took off and didn't look back. (Of course, we are also teaching him now how to stop and not just fall off - but that's what helmets are for!)
Becky and the boys (minus Titus) took off for Houston today to visit friends. They will pick up Aidan Thursday afternoon at the Houston airport when he arrives for Belize.
Titus and I are hanging out at the house. Lisa is with him during the day, and I'll take care of him during the night. His cough has improved a lot since last week, but he is still having some heavy secretions. We have a new medication that we started yesterday and will see how that helps.
Please continue to pray for Aidan in Belize. We've been getting reports and seen some pictures and it looks like he is having a great time.
Last Monday, Becky's sister, Angela, was in town. She decided today was the day for Tucker to learn to ride his bike. (Now, you need to have a little back story - last time she was in town, she decided Cade needed to learn how to swallow a pill - and he ended up throwing up all over her when she stuck in his mouth). But Angela wouldn't let something like that deter her from her end result. She took off Tucker's training wheels, put him on his bike, and sent him down the street. Tucker was yelling "don't let go, don't let go" all the way down the street - and she had stopped way back. He took off like a shot and hasn't looked back since. We are now working on him stopping (instead of just falling off his bike like's he has been doing.
The next day, Cade announces he is going to ride his bike. Now, after puking all over Angela when she tried to teach him how to swallow a pill, I was very leery on how this one was going to go. And, since Cade is deaf in one ear due to his middle ear not formed correctly - it leads to some of his coordination and balance issues.
But, Cade, surprising us all, took off and didn't look back. (Of course, we are also teaching him now how to stop and not just fall off - but that's what helmets are for!)
Titus and I are hanging out at the house. Lisa is with him during the day, and I'll take care of him during the night. His cough has improved a lot since last week, but he is still having some heavy secretions. We have a new medication that we started yesterday and will see how that helps.
Please continue to pray for Aidan in Belize. We've been getting reports and seen some pictures and it looks like he is having a great time.
Monday, March 15, 2010
First for Titus
On Saturday, we had a small family outing to PetSmart to pickup several items for Jude. As we drove up, we made a decision to see how Titus would do in a shopping cart instead of getting his stroller out. As we sat him in the cart, his little hands gripped the bar in front of him. We padded the sides with his blanket and Becky's purse to provide him a little support and off we went. And he did great! He held on tightly and kept his head up. At the end of the trip, he was starting to tire and lean back a bit, but it was encouraging to see him handle a new task.
Friday, March 5, 2010
The Cough Still Remains
Titus still has a hacking cough this week. And although it seems to improve slightly each day, he's still hacking/coughing more than usual.
Other than that - life in the Daily house has been busy. Becky's sister, Angela is in town visiting from Michigan. The boys are enjoying seeing "A". Tucker starts baseball next week - he's so excited he can hardly wait. Aidan leaves next Friday for his mission trip to Belize - and he's so excited he's been packing for the last week.
Becky and I also finish facilitating our Growing Kids God's Way class this week and will be starting a Moral Innocence class at the end of the month - so all in all, things are quite busy around the household.
Other than that - life in the Daily house has been busy. Becky's sister, Angela is in town visiting from Michigan. The boys are enjoying seeing "A". Tucker starts baseball next week - he's so excited he can hardly wait. Aidan leaves next Friday for his mission trip to Belize - and he's so excited he's been packing for the last week.
Becky and I also finish facilitating our Growing Kids God's Way class this week and will be starting a Moral Innocence class at the end of the month - so all in all, things are quite busy around the household.
Tuesday, March 2, 2010
Back to Routine
Titus is back to his normal routine. He went back to therapy today and is his normal, happy self. There's still a bit of congestion, but it's clear and manageable. The last few nights, he has had good sleep (which means we have had good sleep.)
I will write more later this week - I'm currently swamped at work and don't have a lot of spare time, but wanted to get the word out that Titus is doing great. Thanks again for your prayers - we never take it for granted.
I will write more later this week - I'm currently swamped at work and don't have a lot of spare time, but wanted to get the word out that Titus is doing great. Thanks again for your prayers - we never take it for granted.
Friday, February 26, 2010
Feeling Better
Titus had a much better night last night and he had no fever last night or this morning. He's still a bit congested (and he hates being suctioned), but it looks like we have turned the corner a bit. When I left for work this morning, he was taking his bath and happy to be splashing around in the tub.
Now, if I could feel better, we would all be good for the weekend. But, my wife and family would be happy if I don't share the details of how I am feeling so I'll spare you the details.
Becky and I are going to Phantom of the Opera tonight. I first saw it in London in 1987 and I remember catching myself with my mouth hanging open. It was truly groundbreaking in 1987. Becky and I saw it when we were dating, and at our wedding, Becky sang "All I Ask of You" to me. Over the years, we've probably seen it 5 or 6 times including on our honeymoon. So, tonight will be a fun date with my wife and best friend.
Thank you for the prayers this week for Titus.
Now, if I could feel better, we would all be good for the weekend. But, my wife and family would be happy if I don't share the details of how I am feeling so I'll spare you the details.
Becky and I are going to Phantom of the Opera tonight. I first saw it in London in 1987 and I remember catching myself with my mouth hanging open. It was truly groundbreaking in 1987. Becky and I saw it when we were dating, and at our wedding, Becky sang "All I Ask of You" to me. Over the years, we've probably seen it 5 or 6 times including on our honeymoon. So, tonight will be a fun date with my wife and best friend.
Thank you for the prayers this week for Titus.
Thursday, February 25, 2010
Rough Night
Titus is still fighting this bug he has. Vanessa was not there last night since she has completed her 3 nights this week, so Becky and I were up with Titus. One of us was up with him every hour. I don't think either one of us got more than 3 hours sleep. He seemed to be better during the day, but as with many bugs, when night falls, his fever and secretions increased.
As stated before, Titus does not cry a lot - he's a very content baby. But yesterday and last night, he has just whined and cried. You can tell he just doesn't feel good. We are praying this will run it's course in the next few days. And we are praying that we can get some rest today.
I attended the funeral for Kelsey Matthews yesterday. Becky went to the viewing the night before. Honestly, it was very tough knowing that we could very well be the family sitting on the front row. But we do not dwell on the uncertainties of the future, but we rejoice in each day that we have Titus. He is and always has been a blessing.
As stated before, Titus does not cry a lot - he's a very content baby. But yesterday and last night, he has just whined and cried. You can tell he just doesn't feel good. We are praying this will run it's course in the next few days. And we are praying that we can get some rest today.
I attended the funeral for Kelsey Matthews yesterday. Becky went to the viewing the night before. Honestly, it was very tough knowing that we could very well be the family sitting on the front row. But we do not dwell on the uncertainties of the future, but we rejoice in each day that we have Titus. He is and always has been a blessing.
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.
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