Tuesday, November 30, 2010

Play Time with Brothers

Titus is feeling better although Tucker still has an on-again/off-again fever. But last night, the boys were in a rare mood playing with each other. It is so sweet to see the special love and bond each boy has with Titus.

Sunday, November 28, 2010

Running Fever

Titus started running a fever last night. The good thing is, his breathing is ok. He sounds a bit congested, but not a whole lot to suction out. But the fever has been high and poor guy has been just miserable. Titus is not one to cry a lot, but today, he just cried and moaned. We have got the fever down and he's been his happy self for a few hours - stayed awake and laughed through Beauty and the Beast (and so did Tucker and Cade - so glad they re-issue these DVD's every few years). But we are getting him ready for bed and his fever has gone up a bit and he is cranky. It could be a very long night.

Thanksgiving was fun for the family - a very relaxing day spent with family. Our friends, the "K's" from Lake Jackson came up to spend 2 days and we all had fun together - everyone should experience the joy of 10 kids in the house. Between all of them, we only had one busted lip (from baseball), and one bruised toe (from falling off the scooter while walking the dog).

Thanks for the prayers and notes. We are so thankful during this holiday season.

MONDAY UPDATE:  Titus' fever is gone, but Tuck's remains.

Tuesday, November 23, 2010

Hey Buddy

Last night, the 4 oldest went camping. Becky called me to ask I wanted to meet her at Tin Star for $2/taco night. Of course, I said yes - I'm not going to pass up date night (or tacos).

While sitting in the restaurant with Titus in his new stroller, a man carrying a 9-month old, came up and said to Titus "Hey, Buddy".

He then got down on one knee and talked to Titus and introduced his little boy to him.

Can I tell you how much that meant to Becky and I?

We are learning that most people don't look a child in a wheelchair - or if they look at a child with obvious significant needs they may stare or turn away. But very rarely will they ever get on the child's level and speak to him. It warmed our heart that this complete stranger would take the time to do this - and not only speak to Titus, but show his young child how to acknowledge him.

As the man and his family left the restaurant that evening, they stopped by and talked to Titus again. And it made our evening complete.

BTW, Titus had pictures taken at the cranio-facial doctor's office several weeks ago. It's slightly ironic that some of the best pictures taken of him are at the doctor's office, but I had to show off his sweet smile.

Thursday, November 18, 2010

Article on Titus on Baylor Our Children's House

Upon learning about two-and-a-half-year old Titus Daily’s many medical conditions, it was tempting even for his parents, Becky and Paul, to think that the situation might be hopeless – that their fifth son would never be able to function in any meaningful capacity.

However, the care Titus’ has received at Our Children’s House at Baylor in Allen (OCH Allen) has ensured that his case is anything but hopeless.
A Rocky Start

Many special needs children are diagnosed in utero, giving families time to prepare themselves for the hardships to come. But Titus Daily’s medical complications didn’t begin to manifest until moments after birth.

“When he was born, he wasn’t breathing, and they were having trouble intubating him,” explains Becky Daily. “That’s when we first discovered something was wrong.”

It didn’t take long for the medical team to diagnose Titus with micronagthia – his jaw was pushed back, blocking his airway.

Over the course of the following months, Titus also was diagnosed with: cleft palate; ASD/VSD (a heart condition); a single, horseshoe-shaped kidney; profound deafness; glaucoma; malformed optic nerve; hemi-vertebrae (extra spinal bone causing scoliosis); low muscle tone; feeding problems; Dandy-Walker variant (a brain malformation); and the list goes on.

Finding a Good Fit

Titus was only weeks old, but it was already clear that he’d need a lifetime of intense therapy. The Daily’s didn’t know where to turn.

“Some of the nurses in the NICU were the first ones to mention OCH to us. They just kept saying it was a great place,” says Becky.

The recommendation was high praise from nurses who worked for a Baylor competitor.

“When we went to Baylor Our Children’s House, it was like someone threw us a lifeline. I finally felt like we were somewhere where the people weren’t so surprised to see him,” Becky continues. “The staff wasn’t astonished by him. They’ve seen it all before. It’s really a place where families and kids like Titus go and can feel normal there.”

Cause for Hope

Titus was eight months old when he began receiving therapy at OCH Allen. Becky still fondly remembers the initial evaluation process.

“There was so much he couldn’t do, but they were able to begin to do things with him, and he didn’t scream or cry. I was just touched by the way they cared and treated him like a normal child and not just someone who couldn’t hear or see.”

Titus has been at OCH Allen for two years, where he receives occupational therapy, feeding therapy and his favorite, physical therapy. He loves working with his PT specialist and looking up and giving her a big grin whenever he accomplishes something that probably wouldn’t have been possible without the OCH team.

And he has accomplished a lot. He can roll over, prop himself up on his elbows, lift his head and eat pudding.

However, his biggest achievement may be yet to come. Titus is now working with a gait trainer during physical therapy, which could lead to a giant step – literally.

“There is the possibility that he’ll walk,” says Becky, “and I never dreamed that he’d be able to walk.”

Beyond the onsite therapy Titus receives, OCH Allen has educated the Daily’s on how to work with him at home, and even took care of ordering the special equipment he needs. Parental and family involvement is a cornerstone of every OCH child’s care plan.

“OCH has given us hope. They’ve given us a direction and a plan and things we can work towards.”

Tuesday, November 16, 2010

My First Day of School

My First Day of School
by Titus Daily

Today, I went to school for the first time. I have been to lots of therapy sessions, but this was different.

My mom and dad kept squeezing me and kissing me all morning and telling me it would be great. Mom drove me to school and dropped me off with my stroller with the teacher. The teacher took me to my new classroom. There are 2 other kids in my classroom. There are also 2 teacher's aides. They were all very nice to me. They sang us a song about coming to school, then read us a story. The put the books very close to my face so I could see and feel the book.

Mom showed up by then with some of my supplies and showed the teachers and nurses how to change my oxygen tank.

I then got to go to the outdoor playground. That was FUN! The teacher took me up into the little fort and let me spin the spindles, and then the teacher and I slid down the slide. I have never been on a slide before. I liked it.

We also went to the indoor play room, and I go to swing on the pommel horse. That is one of my favorite activities. And Miss Melinda, my vision therapist who has come to the house, was also there to see me. It made me feel good having a familiar person there.

Before I knew it, mom, Aidan, and Noah were there to pick me up and take me home. And, I was pretty tired. In fact, I fell asleep at the table.

I think I am really going to like my teacher and my school. I go back on Wednesday and Friday! But, I need to work on my endurance. I don't want to fall asleep in class when there is so much to do.

That's all for now. I gotta get ready to go to On The Border to celebrate my birthday and PeePaw's birthday!
Titus B

A note from Titus' Mom and Dad,
Thank you for all the prayers and notes of encouragement. We are thrilled and know that Titus will be in a place that will challenge him, teach him, and provide him new experiences. Our next big hurdle will be the day he starts riding the bus to school, but for now, we are content taking him and picking him up.

Here's a pic last night of Titus with Meemaw celebrating birthdays! He took a VERY long nap after coming home from school, but then was a 'live wire' at dinner and after we came home. At 10pm, he finally settled down and went to sleep.

Sunday, November 14, 2010

Happy Birthday Titus

It's hard to believe, but today is Titus' 3rd birthday. My baby boy is growing up.

Titus has had quite a week. On Thursday, he was the 'model' for a meeting of Physical Therapists on how to fit a child to a wheelchair. Titus charmed them all with his pleasant personality and smile. And Becky got to speak/share her heart with approx 150 PT's from around the area.

But, in another group meeting last week, Becky met a lady in Frisco whose child had outgrown their stroller - and she brought if over this week for Titus to use. What a blessing to have a stroller for Titus to ride in - There's an attachment for the house that allows us to raise/lower him at the table or surroundings and another attachment for a stroller out in public. This chair allows him to sit up better and holds him in place better which also works those trunk muscles.

And tomorrow, Titus starts Early Childhood School. Now that he is three, the at-home services we have received from Early Childhood Intervention stop and he will receive those services at school. It was an emotional time since some of therapists that have seen Titus for the last several years will no longer be seeing him in our home. All of us have grown to appreciate these sweet ladies who have worked with Titus so diligently while also seeing the craziness that makes up our household. They have been a blessing to all our boys and to Becky.

Titus will start school for 3 hours a day, 3 times a week. He can work up to 5 days a week as he gets older, but right now, we feel the private therapy he is getting on Tuesday and Thursdays is great for him and our therapists at Baylor Our Children's House know him so well (and he has made SO much progress). Titus will be in a classroom with 2 other children, 1 teacher, and 2 aides. The classroom is full of wonderful developmental toys and stations. I know Titus is going to have a lot of fun, I know he will be taken care of, and I know that this is the best thing for him. It's just . . . he's my precious little boy. Becky and I can't imagine him away from the house 3 hours a day.

So on Mondays, Wednesdays and Fridays', you can say a prayer for Titus (and us) as he starts school.

My precious little one, you have been so blessed this year. It's been your healthiest year yet and you've grown by leaps and bounds. You are making strides and showing me what true endurance is all about. Your laugh makes my day, your smile melts my heart, and your slobbery kisses are your way of letting me know you love me. I love you dearly.

Monday, November 8, 2010

Orphan Sunday

This past Sunday, our church emphasized Orphan Sunday. Becky and I were asked, along with the boys, to share in KidzWorship about our story of adoption.

Saturday night at dinner, we were talking with the family about what we were going to say. I looked at Cade and told him, 'We are going to talk about adopting you'.

To which Cade thought a moment, then looked up at me and stated, "I thought I already was adopted?"

That boy - he takes everything SO literally.
So I corrected myself and told him -"We are going to talk about WHEN we adopted you!"

Now, I can talk about adoption and how it's changed our life all day. But to talk to 1st thru 5th graders about adoption, I realized I had to use language and tell the story in a way that they would understand. And, I really wanted to include Aidan and Noah and let them share their view.

And, we had a great time. It was fun to share as a family and heartwarming to hear Aidan and Noah talk about the affect it has had on their lives. And, my prayer is that out of the several hundred kids who heard us talk, the seed was planted in their hearts that some day they will expand their own families through adoption. And they will realize that being part of family doesn't mean that they all have to look alike or have the same DNA, but that God puts families together in all sorts of ways and with all sorts of colors.

Friday, November 5, 2010

Little Cowboy

Texas Born! Texas Proud!

Can you believe he's 3 in less than 2 weeks!