Unexpected Joy

We have been waiting to share this with you.

Several months ago, we were approached by Fotolanthropy with an incredible opportunity. Katie Norris Photography and Jonathon Link Studios spent the day with us taping and taking pictures of Titus and the the family. Becky and I had a chance to share about Titus' story and the journey of the last 4 years.

And here's the result.




You can also see the results here.
http://www.fotolanthropy.com/2012/03/fotolanthropy-unexpected-joy/
We are thrilled. We are humbled. We are blessed. Please pass along the message of Titus and the mission of Fotolathropy.

Countdown to AWOL: Honduras

In 5 days, Aidan, Noah, and I (along with 68 other youth/adults) will head out to Honduras for FBC McKinney's AWOL (A Work of Love) spring break mission trip. We are all very excited about next week and all that God has in store for us. We are each on different teams - I have 7 teens in my group (2 in high school and 5 in junior high) along with Deanna P who will be co-leading the group. At this point, we are prepared to share our testimony, share in schools about life in the USA and overall, be available to assist the church we are at with what they want us to do.

We covet your prayers during the week. Becky, Titus, Tucker, & Cade will enjoy spring break in town (although I hear that Tucker and Cade may take a small camping trip).

All I can say is - what a great way to spend Spring Break! And I have to add this on Aidan and Noah. When we decided to go, both boys came to us and told us they would pay for their trip. And they did. In fact, they worked, saved, and found ways to earn money and paid off their trip way before the final deadline of the last payment. I couldn't have been more proud of my boys and the ownership they took in earning their money for this trip.(I even asked them if they wanted to chip in and pay for some of their dad's trip - they told me I could find ways to earn the money if I put myself out there).

Titus has been doing great at school. Along with all of us, he's got allergies from all the spring in the air and wind blowing, but he's been healthy and happy while back at school.

Aidan and Noah also have their one-act plays this week for Enrichment (Aidan is in Tom Sawyer, Noah is in Charlotte's Web).

And my wonderfully active mom had a slight accident on Friday and fractured her wrist. She will be going to the orthopedic surgeon this week to find out if she needs surgery or casting. She's never had a broken bone before, but as I told her, Dad waited till he was 72 before he broke a bone, I waited till I was 32 before I broke my arm - we Daily's are just 'late in life' achievers when it comes to the broken bone department.

And last of all, Aidan is praying/preparing to go on the high-school mission trip to Africa this summer. This trip will cost a lot more than Honduras. As he told me, "don't worry dad, I have a plan". And I trust that he does - Aidan has full confidence he can earn $2500 over the next few months. And if you have any work for him, he would be glad to take it on. He can house sit, babysit, pet sit, mow lawns, clean out garages, etc. You can email him at aidandaily@gmail.com.

Resting (and other topics)

Titus came home on Sunday afternoon - and while he is so glad to be home in a familiar surrounding, he's still got pneumonia and still sick. He requires a lot of deep suctioning throughout the day (something that he intensely dislikes), but he always calms down quickly as soon as it's over.

We are watching him very, very carefully to assure he remains stable and calm. He won't be returning to school until we know he is back to 100%.

As usual, when Titus is in the hospital, we all settle into our "hospital routine." But for some reason, over the last few years, I have developed an inability to sleep at home when Titus/Becky are at the hospital. This means, I am watching moview, reading books, and only getting 3-4 hours of sleep at night. Last Saturday night was one of those nights.

But, Sunday morning, Aidan, Noah, and I needed to be at church for an 8am meeting for our upcoming mission trip to Honduras. Punctuality is key to these meetings (for those who have been on a Youth FBC McKinney mission trip - you know exactly what I mean). As Noah, Aidan and I practiced our spanish, we keep getting tickled since one of my boys has a propensity of messing up Jorge and Jesus. I assure him that JorgeCristo will mean nothing to the Hondurans.

All through the meeting and Sunday School, I am struggling to stay coherent and awake (although I'm not entirely sure I was coherent on my words). But once church started, the caffiene had kicked in and I was ready for a great time of worship. Pastor Lee brought an incredible sermon on the end times and the "crowns" awaiting those believers. As I sit between Tucker and Cade, my heart is full with the incredible sense of worship.

As the service was ending and Pastor Lee was beginning to pray, I closed my eyes deep in prayer only to be startled with the what happened next.

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My eyes open, and Tucker looks at me with that grin - which then breaks into a smile - which is leading to a laugh. Meanwhile, the pastor is still praying, Noah's shoulders are shaking, and as I look around, I see those sitting around me stifling the laughter through the prayer.

Tucker whispers (quite loudly) "I couldn't help it - it just came out".

And while I believe spontaneous praise should burst out during worship, I'm not convinced that burping falls into that category. So, to my incredible pastor, church, and those sitting around us on on the 3rd row, I offer my deepest apologies for the disturbance (and smell) of Tucker's burp duing the most sensitive time of the service. All I can say is - we are working on it.

Coming Home

Becky is headed home with Titus - while he has gotten better over the last few days, he still has some recovery to do before he has back to 100%.

We are all ready for Titus (and mom) to be back home. While Titus was in the hospital, he was on a steroid that made him hyper. He would thrash his toys around the bed, throw his pillows off the bed, and was pretty funny with all the extra "strength" he seemed to be exuding. They took him off the steroid yesterday, took his IV out today, and all of his antibiotics can be given through his G-tube now.

The boys and I went up to spend some time at the hospital yesterday. I think the picture pretty  much speaks for itself.

Slow Improvement

Titus is showing improvement - slow and steady. His oxygen has been turned down, but is still twice the level we have him at home. When he's awake, he's content and alert (except when the nurse is giving him meds in his IV). Becky has propped him up in the chair so he's not laying down all the time.

In some ways, Titus is just like any other kid in the hospital. He gets bored when there's nothing to do. He is used to going to school, going to therapy, and having 4 older brothers play with him all day. And at the hospital - well, he has mom and the nurses. And this video shows you what he is up to.

But, this morning, Titus had a first. Becky mentioned last night that Titus had a loose tooth. Now, this is a little strange since most 4 year olds aren't loosing their teeth yet. But since Titus was born with a horseshoe-shaped cleft palate, the doctors were always wondering what teeth would come in. And, for those that have seen his smile, you know that Titus has a full set of teeth. Several of his teeth though are fused together and pretty stained.

This morning - he lost his first baby tooth. Becky is trying to get a picture of him without it and as soon as I have it, we will post it.

At this point, we anticipate Titus coming home Sunday, but as we have learned, we take it each day as it comes.

And, I have to say this - thank you to Becca and Melissa for going down and visiting with Becky and Titus yesterday. That made her day and you guys made her laugh. You two are precious friends and we love your families dearly.

15 Years Ago

15 years ago, Becky and I were at the hospital anticipating Aidan's arrival. And right before midnight, Aidan was born. With Aidan's birth, our journey into parenthood began. And the last 15 years have been quite a ride. So, to my oldest son, happy birthday. You are a joy and make your parents proud.

And tonight, 15 years later, Becky is in the hospital again - this time with Titus. This morning, Ada,  Titus' nurse, stated Titus had started running a low fever. So we kept him home from school - and within the next few hours, his fever rose, his breathing became more labored, and his oxygen kept getting turned up. At 10:30am, Becky took him down to the ER at Children's Medical City and the diagnosis came back as pneumonia. Within a few hours, Titus was admitted to a room and has been resting.

We are very fortunate and thankful for the staff at Children's Medical City who know Titus so well and for his doctors who know how quickly Titus can take a turn for the worse. We are confident that he is where he needs to be.

Our prayers are that the antibiotics provided will help his body fight the pneumonia and infection. We know Titus' lungs are so compromised even without pneumonia. We anticipate he will be spending the next few days in the hospital.

Becky took this picture this morning before his fever was up - Tucker loves playing with Titus (and Quita is a great sport to be a pillow).

Hard Work

Titus consistently goes to therapy. And at times, it does seem that everything Titus does relates to therapy in some shape, form or fashion - whether it's physical, occupational, or speech (both for sounds and eating), much of his day is spent practicing over and over the little tasks that many of us just take for granted.

For years, Ren, his physical therapist at Baylor Our Children's House, has worked with Titus on the basics of sitting up, kneeling, crawling. She will work for weeks (and sometimes months) on training one muscle group on one task.

This year, Ren has been working on combining several of these repetitive motions for a task. Titus is now sitting for up to 2-3 minutes at a time (now, we have to put him in that position - but he can now hold himself there by working to maintain his balance with his arms/hands). He's not to the point where he can put himself into a sitting position, but he's working on it.

Another task they are working is crawling - and while he is far from actually being able to crawl, he is learning to move his arms - and then pull up on a bench. And this little video shows how he is doing. You have to watch him independently move his arms and reach up - and while you may not notice it at first glance, these are the little tasks that he works so hard at to accomplish.

We are very thankful for all of his therapists that work diligently with Titus. We are thankful that they know how to break it all down to small little tasks and train his muscles over and over till he remembers and "gets it". And we are so thankful for a content child who shows diligence in working so hard everyday. When I look at the number of people that work with Titus everyday, it's amazing the stamina that he builds up. Many days after 3 hours at school (where he works and plays), he goes straight to therapy in the afternoon. And while at times I think he may be so fragile, I also realize how his stamina is growing. He is showing us his personality more and more (and on occasion, he shows us a little attitude).

Thanks to all for consistent and sustained prayers for his health and strength. As we enter winter, (and cold/flu season), it's always a tricky time for Titus. Your prayers for his health are always appreciated.

For those of you who read the blog through the Feedburner email subscription, you may need to click on the link to the blog to see the video.