Saturday, May 29, 2010

Home Again

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.

Friday, May 28, 2010

Friday Morning

Titus is doing ok. All the "junk" in his lungs is breaking up (that's good) and he is a relatively happy camper. Physical Therapy came by yesterday to get him working some - and he was a trooper.

Today, they are moving his respiratory therapy to every 4 hours and back to the normal dosage of medicine we use in his nebulizer when giving a breathing treatment. If he can tolerate this, we "may" go home on Saturday. But, we'll know when Saturday rolls around.

Wednesday, May 26, 2010

Wednesday Morning

It's on 9:30, but Becky and I have already had a full day. Becky had a 4am appt with a rheumatologist. That's the only time he sees new patients - how convienent! So I was up at 2:30am (after working till 11:30pm) to drive down, Becky was up at the same time to meet me there and was up just as late with Titus. Needless to say, we looked fresh! (more like freshly warmed over). Just like I wanted to get to the bottom of my foot pain and now have a surgery scheduled, Becky has had joint pain and overall exhaustion that she wanted to get to the bottom of with the right specialist. We'll know more in a few weeks on that front.

As Becky went for x-rays, I went back to the hospital to stay with Titus. He was sleeping soundly and resting comfortably. He woke up when I came in, looked at me and smiled, raised his hands up to touch my face, and then went back to sleep.

Becky got back to the hospital around 8am, and I came into the office for a series of meetings.

But as I left, the respiratory therapist was in working on Titus and stated he sounds good and his lungs sound clear. We are still waiting on lab results to come back so until that happens, we don't have a timeframe on when we are headed home. I'll let you know more as the day progresses.


PS - The boys stopped to visit Titus after lunch

Tuesday, May 25, 2010

Tuesday Evening

I just got back from the hospital. If you didn't know Titus was sick, you couldn't tell it. He is happy, laughing, playing, and in a great mood. They are doing respiratory therapy every 2 hours - and it's helping. His lungs still sound "junky" but it looks like it may be breaking up. We do not have the lab results back yet.

Tomorrow is a busy day for us. Becky has a 4am rheumatologist appt. I will be with her while a friend stays with Titus at the hospital. And, I'm in the middle some big work deadlines. I have a great group of co-workers who are assisting here in USA and in the UK, but it's just a lot to do in a the next week.

Tuesday Morning Update

Titus had an "ok" night at the hospital. He was transferred to a room on the Pediatric floor around 11am - which is around the time his fever broke. He's on an IV (which they got in the first time) and taking some heavy-duty antiobiotics. His white blood count was very high last night prior to starting, so there is obviously some infection going on and we realize that taking him to the ER yesterday afternoon was the right thing to do.

I'll update more today as we know more.

Monday, May 24, 2010

At the Emergency Room

As I mentioned briefly last time, Titus had a rough night Friday night. Saturday, he was struggling to breathe by late morning was running a fever. Tylenol brought the fever down, and he breathing/heart rate returned to normal around 3pm Saturday and all of Sunday/Sunday night.

But today, he started struggling again, and Becky and the nurse, made the decision to take him to the ER. When they got there, his fever was 104. They have him on Tylenol to bring it down, are in the process of checking him into a room, and taking a chest x-ray. The early indication may be pneumonia but will know more in the next few hours.

I'll update the blog and facebook with the details as it progresses.

Titus has not had a hospital stay since Cincinnati (and that was for the effects of anesthesia after the evaluation that was done - he was NOT sick). So, it's been almost 8-9 months since Titus spent the night in the hospital for being sick. We are thankful for these long spells of good health. But it's amazing how you "kick in" to survival mode. The boys are taken care for tonight and tomorrow - and we'll make a plan each day (which is always how we do it - just take it one day/one hour at a time).

As we have stated many times, this does not catch God unaware - He has a plan.

Saturday, May 22, 2010

Humbled

Wow.

The article in the Dallas Morning News came out this morning. And, it brought tears to my eyes (and when was the last time you could say that about an article in the business section?). Becky and I were up early this morning (Titus had a rough night) and both read the article twice.

And we both looked at each other and said, "wow".

Maybe it's because our prayer is that this will have an impact, that families will see the need to financially plan for their child with needs, that families will realize there are resources available to assist, that people will realize that families like us are just every-day people who love our children dearly and will sacrifice for them.

Pamela Yip, the reporter, did a great job weaving the story together and accurately portraying all we told her.

John F Rhodes, the photographer, truly captured Titus spirit and smile. He snapped hundred of pictures that day, but the picture portrayed in the article is beautiful.

And it's the picture that really hit me.

You see, when Titus was born, we had all these grandiose plans for our 5th son. Like any proud parent, I wanted to send out a birth announcement telling everyone the date and details of his birth along with a great picture.

But when Titus ended up spending the first 6 months of his life in and out of hospitals, hooked up to numerous IV's and machines, going through numerous surgeries, having those hideous screws sticking out his jaws for weeks, we never really had the time. We were so concerned with his daily survival that sending out birth announcements never became a priority.

But today, I feel like that picture and article was his "life" announcement to the world. So here goes:

Paul and Becky D
along with big brothers Aidan, Noah, Tucker, and Cade,
are proud to announce the birth and amazing life of their son,
Titus Beck, born on November 14, 2007


He is "fearfully and wonderfully" made exactly the way God intended!

If you are reading our blog for the first time, I would encourage you to go back through and read about Titus' journey. You will see how it is a journey of faith. As a family, our faith in God our creator has deepened through the trials of the last few years. As a family, we have learned the comfort and peace that God provides in times of distress and pain. As a family, we have seen our friends and church (First Baptist McKinney) be the hands and feet of the body of Christ, caring for us. And as a family, it has drawn all of us closer together.

I am truly humbled by this. God is good.

Here's the link to the article.

Special-needs families' planning can be complicated | News for Dallas, Texas | Dallas Morning News | Dallas Business News

Posted using ShareThis

On a separate note, Titus had a rough night. He sounds a bit congested and his oxygen sats keep dropping. His alarms have gone off most of the night. Becky has been doing respiratory therapy since 5am this morning. Neither of us got a lot of sleep last night (and boy, are we thankful for good coffee/caffiene). Your prayers are appreciated.

Thursday, May 20, 2010

Flipping Out

One of the first things in therapy Titus began work on years ago was laying on his tummy and propping his body up with his arms. From there, it progressed to teaching him to roll over. He had to learn to lift his arm over his head and use those muscles to push him over on one side. And then he had to learn how to roll back.Titus has been able to roll over for quite some time, but there were days that he would roll over and then stay there.

Not anymore! Titus flips over on his tummy, props his arms under his chest and lifts that head. He will then flip back over on his back and flip over again (this time on his other side). He's learned that this gets him around the room. We will lay him down on his blanket, only to find 2 minutes later he has rolled, and flipped hiimself across the room. If he sees/senses a toy on the floor he wants, he is finding a way to work himself over to it.

And now, when he gets on his tummy, he is lifting his bottom up - he's trying to get those knees under him. He's not quite there yet, but boy-oh-boy, is he working on it. These are the times when you see that all the consistent therapy is working. It's a very slow process, but it's working.

One of the therapists stated that children like Titus who are not crawling/walking and not putting pressure on those bones tend to stop growing. The bones need that pressure of standing and movement to help stimulate growth. And Titus is growing. Putting him the stander is really helping him put weight on those legs. If you have seen him lately, you know how big he has gotten. He has long legs. His little feet are hanging off the edge of the stroller.

In our microwave world of instant gratification/satisfaction, Titus is my constant reminder that's it's the steady and consistent pace of work and therapy that shows the results. We cannot and will not give up. And it's exciting to see how far he has come, and how far he might go.

Btw, the article in the Dallas Morning News is scheduled for print this Saturday, May 22. It will be in the business section. We may just have a passing reference or quote, and then again, there may be pictures. I don't know yet, but I am trusting that what is written will be a help and resource to people. I'll post a link to the article once it's out there.

Wednesday, May 19, 2010

Spammed

Let me start off with, it's been a very busy week. Becky has a sinus infection, I have a hacky cough, and my work is very intense for the next few weeks, plus I'm working to lose a few pounds prior to surgery and stopped drinking diet cokes (my head is splitting at the moment). To put it nicely, I'm cranky.

Now that I've set the tone, you can see my reaction as the phone rings last night from a friend in Houston informing me of spam emails that have been sent out from my email box advertising a certain pharmaceutical which I do NOT take.

I logged onto email, changed my password, ran my virus scan and performed several other operations, all the while receiving emails from various friends (some who I have not talked/emailed with in YEARS) asking about said inappropriate link in an email that I sent to them. So, I spent the rest of my time apologizing over and over again.

Had it been just my contacts in my email it wouldn't have been to broad, but I happen to have saved in my contacts the emails for several yahoo-groups that I am a member of - including my entire Sunday School class and 1/2 the church population I believe.

And the ironic thing is what I WAS doing yesterday. Last year, I (along with a co-hort - Hank O) wrote a workshop on Training Your Children on Technology or as I liked to call it 'Raising Daniels in a Technological Babylon'. I am updating the workshop to deliver again this summer, and yesterday during my lunch break, was all over the internet doing searches on security, facebook, spam, virus, etc. Apparently, I hit on something that wormed it's way in (but trust me, I was NOT searching about abovementioned pharmaceuticals).

In the event you received an email from me with nothing in the Title line and just a link - please delete and do not open. And please accept my apologies. I've been red-faced all day and heard more than enough jokes about little blue pills.

Wednesday, May 12, 2010

Relief in Sight

For the last 2 years, I've lived with pain in my heels/feet. For the longest time, I blamed it on just getting old, but last year decided to go to a Podiatrist. The x-rays showed large bone spurs on both of my heels causing plantar fasciitis and tendinitis. After several months of therapy, foot straps, shoe inserts, and pain killers, the pain subsided a bit, but is still there. He kept hinting at surgery but would never commit. The therapist suggested the cardio I was doing at the gym wasn't helping, so I stopped working out, which caused my weight to go back up, which has caused my blood pressure to go up.

Monday, I went in for my phsyical, explained all the aches and pains of being 48 (and that's not a secret because if you are ever around Tucker, he shares my age with everyone). Of course, my blood pressure and weight gain is a huge concern, but working out has become very painful due to the foot/ankle pain. And for me, I loose weight (and keep it off) if I can at least walk 3 miles a day. Instead of putting me on high blood pressure medicine immediatley, he wanted to try to see if we could correct the other problems first. My doctor recommended an orthopedic surgeon who was able to see me Tuesday. The orthopedic surgeon took a look at my x-rays, explained the options of therapy and possibly surgery and then he said the magic words "I'm not a plan A , then plan B type of guy - my gut feeling is, therapy is only going to relieve some of the pain, but your probably going to need surgery anyway since those bone spurs are pretty big."

I said "when?" He said "June 9", and I cannot tell you happy I am. We'll do my left foot first, then my right foot in the fall. I realize crutches won't be easy for a few weeks, and wearing a boot in the heat of summer will be very stylin with my shorts, but to know that I will finally be able to stand up and walk without pain is such a relief. I never thought I would be so happy about having surgery but I am so ready.

Monday, May 10, 2010

Newspaper

You can imagine my surprise when the phone rang at work last week and I heard "Paul, this is Pamela Yip with the Dallas Morning News - do you have a few minutes to talk?"

For those that know me well, then you know that I don't MOVE in the morning until I have had my cup of coffee and read the Dallas Morning News. There was a time I didn't move until I had read the Dallas Morning News and completed both crossword puzzles (but once we had kids - that luxury went out the window.)

Maybe it's a family tradition, but ever since I can remember, mornings were meant for reading the newspaper. My dad did it, my mom did it, and since I was in 5th grade, I have done it. I cut my teeth reading the Corpus-Christi Caller Times, but when I moved to Dallas, I had to try both dailies - the Dallas Morning News and the Dallas Times Herald, but settled on the Dallas Morning News. I read it from cover to cover, in order (Front Page, Metro, Sports, Business, & Entertainment - and no, I am not obsessive-compulsive, I just believe in routine.) In high school, I editor of the yearbook, and in college, I wrote for the school newspaper, so I love the power of print media. For me, it can't be duplicated by the internet, so I guess that makes me old-school. (And to my precious #3 son who continues to ask and repeat my age everywhere I go, I said old-school, not OLD!)

So my response to Ms Yip was "Of course I have time - and I read your articles in the Business section all the time." Ok, you are probably thinking, Paul - you are a major geek to get so excited to be called by a business news reporter, but take it from me, this was a MAJOR highlight of my week.

Somehow my recent blog posts on kids with special needs and how to treat their families has been emailed/forwarded all over and somehow it landed at the Dallas Morning News. And Ms. Yip was calling to ask me a few questions about financial plans for Titus and how we learned about that and what advice would we give other families.

I think I talked without taking a breath for about 15 minutes - I've never been good at talking in sound bites. But the opportunity to share with other families in a forum as big as the newspaper is incredible. Even if we are only quoted in one line, the opportunity to encourage a family is priceless.

Tonight, they are sending out a photographer to take pictures of the family. And I can hear them now telling us to "act normal" while they snap pictures. I'm not sure we even know what "normal" is with 5 boys and 2 dogs. I do know it won't be quiet, I'm sure someone will break out in silly song (Cade or Aidan), I'm sure someone may be shot with a bow and arrow (that would be Tucker), I'm positive Jude will bark, and I'm paranoid that the house won't be clean, but in the end, I know Titus will charm them with his sweet personality.

I do not know when the article will run or if it will even appear, but my prayer is that families with special needs will find some encouragement and help from the article. And, if through the article, people find this blog, then my prayer is that they will learn about a God who loves and cares for them deeply.

Tuesday, May 4, 2010

Go and Be

We did Church last Sunday.

Preacher didn't say a word.
Choir didn't sing a note.
Ushers didn't pass the plate.

But the Church showed up in a mighty way and it was incredible see the Church in action.

Last weekend was 'Go and Be' weekend - part of our Transform Your World program. For the last 3 years, we have closed the doors to the building on Sunday morning and gotten the Church to go out in the community and serve. This weekend, our family served in Garage Giveaway - everything was free to families in need. And you would not believe the amount of goods and food and services the church had to offer. A grocery store in Waco delivered 3 semi's of food, a local manufacturer of women's clothing delivered several truckloads of brand-new clothes (tags still on), the community donated clothes, toys, furniture, and appliances. Bounce Houses were set up for the kids, free haircuts were given, free eye exams were given, and the list goes on.

Thousands of people in McKinney showed up and the Church was there to be the arms, hands, legs, eyes, and ears of the body of Christ.

And that is what Church is . . . it's not the building, it's not the service, it's not the preacher.

I think we have lost that focus over the last few generations. So much emphasis has been put on the building, or the style of worship or the personality of the preacher/staff or the programs. And that's not the Church. The Church is believers of Christ serving others. . . plain and simple.

And that's the other part that we have sometimes lost focus on. . . It's not about serving each other in the building, it's about serving OTHERS. And as a very wise man's wife says (shout out to Deanne R) "you can't meet their spiritual needs till you meet their physical needs.

And that's what Go and Be was all about. This year, multiple churches in the Dallas area were involved. We've used several slogans such as "the Church has left the building" or "Don't Go to Church . . . Be the Church". But what ever we say, it's been exciting to see more and more people get involved.

Aidan and Noah were great helps this year. Both boys helped unload trucks and cars that were donating supplies for the Garage Giveaway on Saturday and Noah helped with landscaping and teacher's gifts at Finch Elementary. Becky and I helped in several different areas - from unloading to registration. But for me, not only was it a joy to serve along with other believers, but it was a joy to see my boys learning the true meaning of being the Church. They worked hard, without complaint, and with a smile on their face. And my prayer is that as they grow, they continue to selflessly give, work tirelessly, and serve others.

And for those of you reading, I pray you find your part in the Church. And I have to ask - What is your function in the body of Christ - and are you using it (or sitting on it)? Are you "attending" or "serving"? Are you taking care of the needs of those around you (especially those families with special needs kids)? Are you asking "how can I help you" instead of "wasn't that a good service (for me)."

GO . . . and BE!