Mr. Titus Goes to Austin

Becky, her mom, and the boys got back home around 9:45pm last night. I haven't received a full report, but here's what I know.

On Sunday, after Becky decided to go, it was a furious display of activity while everyone prepared. Aidan, Tucker, and Cade washed the Suburban after they had packed their bags. Becky "fretted" a bit about what to wear and finally settled on her combination of clothing and jewelry (had to show a little bling). Meanwhile, I worked on finding them a hotel that was reasonable in cost/distance from the capitol.

Once all were packed, they took off around 4:30pm on Sunday - arriving at 9pm in Austin. Upon arrival, Becky discovered her luggage was missing and in fact, still sitting in the master bathroom. She looked up and the "promised land" was across the street (Target) and was still open. She and Aidan made a very quick shopping trip where she purchased the basics (and the "heaviest earrings ever" which kept falling off.)

While she was traveling, she asked me to write up the testimony to present since a written copy is generallly left behind. I worked on that and Becky edited upon arrival.

On Monday, Becky had to be at the hearing room by 7am to sign-up to testify. After enrolling, Becky, her mom, and all 5 boys then showed up at 9:30am for the hearing and testimonies. Becky wasn't called up to testify around 11am. (And yes - that means all the boys were occupied during the two hours to wait).

Becky was able to speak to how services provided from the state of TX through various programs dealing with Deaf / Blind children have been incredibly beneficial for Titus. She pleaded with them to not cut funding for these programs since they are vital to the health and quality of life for Titus and other deaf/blind children.

After her testimony, and on the way to lunch, they caught a glimpse of Governor Rick Perry, saw the Pony Express ride up to the capitol to present a proclamation, and Tucker climbed the rail next to a very rare painting and gave the security guard a heart attack (I'm sure he won't do that again).

During the afternoon, Becky had the opportunity to also testify at another hearing or go visit the Texas School for the Blind - and honestly - this is where my update ends. I'm not sure which she decided to do and the next quick call I got was that they were headed out on the road to come home. They got home last night around 9:45pm - all quite exhausted except for Titus who was ready to play since he was out of the car seat. I took care of getting Titus to bed and as I was finishing up, the night nurse showed up, and it was lights out for the rest of us.

Becky has pictures and more to say - but I'll have to get that from her tonight.

Thanks for all your prayers. I know some people thought we were absolutely crazy to drop and go like that, but we are learning that if we are not an advocate for Titus, no one else will be. And, it's also about obedience. When you hear the call, you have a choice. You can sit around and discuss/debate about it for hours/days/weeks (and possibly miss the opportunity) or blindly obey and receive the blessing.

Testify!

While sitting at lunch after church today, Becky looked at me and said "Don't think I'm crazy, but I just got an email and they need families to speak at the Tx House of Representatives Appropriations Committee tomorrow as they review budgets for deaf/blind children. Can I take the boys and go?"

And I said "sure - what a great opportunity".

And that's our life in a nutshell - you got to be flexible when opportunities come up.

And I know my mom is thinking "See - all those times I told you to "play it by ear" are now paying off."

The boys are excited to stay in a hotel. Becky and I are excited that they will get to see the state government at work. But most of all, I'm excited that my wife will get the opportunity to be an advocate  - not just for Titus, but for all the kids in TX that have disabilities. There are approx. 700 kids in the TX school system that are deaf/blind. And we are very fortunate to live in Dallas where we receive great services from the Division of Blind Services and other related agencies. And, as you have heard, the TX state budget is looking at a $10 billion shortfall. There are numerous places they are looking to trim the budget - education being one of the biggest targets.

Our prayer is that Becky will represent our family and all families who live with a child with special needs and receive services offered from the state. These services are vital to the life and education of our children. So join me in praying for her tomorrow as she shows up at 7am to be part of the open testimony period.

(Right now, she's more worried about what to wear than what to say - you know my Beck - never at a loss of words, but she keeps asking me "what does one wear to an appropriations committee meeting?"

Down to Me

Last weekend, with all the boys sick, Becky and I were thankful that we had not caught anything. But last night, the stomach virus hit Becky. As you can imagine, I am now paranoid that I am the only one remaining who has not gotten sick.

I've yet to understand why stomach virus's wait to hit till 10pm at night. And I swear this virus has a timer that goes off every hour for 4-5 hours. Poor Beck  - we have been keeping her in bed today and making sure she gets her rest.

Titus is slowly improving, but still has a hacky cough and secretions. As soon as I say his fever goes away, he starts a small fever. So, I'll just say, he's making improvement.

We are now going on our 3rd day of being house-bound due to the icy roads and below-freezing temps. It has not gotten any where close to above freezing since Tuesday morning. And now they are saying there's a possibility of snow tomorrow before the temps rise for the weekend.

My theory is that Dallas is doing everything they possible can to keep the Green Bay Packers feeling "at home" with the cold temps. But yesterday, it was actually to cold for even the Packers to practice outside. So they used the Highland Park High School indoor stadium for practice. (And for those outside of Texas - yes, we have High Schools that have indoor football practice facilities.)

Thanks for the prayers and concern.

And - GO PACKERS!

Brrrr - It is COLD!

If you are in the USA, then you know we are experiencing quite a winter. And right now, it's 13 degrees in Dallas and I have several inches of ice covering my driveway (and all the roads) with a light dusting of snow. And, it's not suppose to be above freezing for the next few days.

Let's just say, it's really putting a damper on the Super Bowl events planned all over the city this week. But, should be all warmed up by the weekend. But at least, it's keeping the Packers acclimated so they are ready to beat the Steelers on Sunday.

A quick update on all the illness - Cade is still running a fever, Noah and Aidan are still coughing, and Titus is still hacking/coughing with thick congestion, but he's not running a fever. With the ice tonight, our night nurse has cancelled. If we can just get everyone to stop coughing, they will all get to sleep.

5 for 5

We hit a new household record this weekend - all 5 boys were sick.

It started Friday with Cade dragging a bit and by Friday night, Tucker was feeling "tired". Saturday morning, Aidan came down for breakfast and looked like death warmed over. Titus had a very low, low fever, but was feeling fine. So, we just kept things quiet around the house and let people rest. Tucker and Noah played in the backyard some making practice swords (since it was an incredible 75 degrees). And, Aidan felt good enough to go to Robin Hood practice - big mistake.

Saturday evening rolls around and things began to hop. Titus' fever goes up and Noah starts to feel ill.  And then Noah and Titus decided to take things to the next level. As soon as we were headed to bed, Noah decides it was time - and he began to throw-up every hour, on the hour for the next several hours. I will say, I'm proud of my boy - he made it to the bathroom each time, and he can definitely barf louder than me.

At the same time, Titus fever is going up. We always know when Titus has a fever, because his heart rate will go up - especially when sleeping. His heart rate was over 150 and he was trying to retch. When Titus was a few months old, he had surger for a nissen - which means a fold in his stomach which prevents him from reflux - but also prevents him from throwing up. But that doesn't mean the impulse a body has to eject is stifled, so we could tell the poor little thing needed to get things "out" of his stomach. Fortunately with the g-tube, we could hook up and empty his stomach out. But, the heart rate was concerning so after consulting the NurseLine, Becky decided a trip to the ER would be best.

As Becky was driving Titus to the ER, he began retching and needed to be suctioned and have his stomach emptied out. Becky didn't even pull over she stopped the car, called 911 and got in the backseat to take care of Titus and wait for the ambulance. Now, it's a bit confusing to an EMT to be looking for a car parked in the middle of the road and Becky could see them cruising the parking lot for her, but she got their attention. They put Titus (carseat and all) in the ambulance and took off with Becky following.

The good thing about showing up in the ER at Medical City Dallas is that they know Titus very well. Within minutes he was in a room and nurses/RT's from past visits were showing up to visit and check on our little guy. He tested negative for the flu, but they gave him some nauseau medicine to help with the retching and within minutes, he was asleep. Becky and Titus were back home by 3am (around the same time that Noah stopped throwing up). By 4am, we were all back in bed and everyone had a few hours of good sleep.

None of the boys felt good on Sunday, so we divided and conquered. Aidan stayed in the media room and watched the Pirates of the Carribean trilogy. Tucker and Cade holed up in the master bedroom and watched Veggie Tales and Toy Story (1/2 in spanish - for some reason, they love the spanish version). And Noah didn't leave the living room sofa for 10 hours while he watched Little House on the Prairie reruns. (boy, that Nellie Olsen is annoying). Titus slept a good portion of the day, but was just not a happy camper.

Becky and I worked to keep everyone hydrated and medicated - and even through it all, I managed to clean out the foyer, polish the door, and repair the broken sofa in the living room.

And we were so blessed to have friends bring us food and gatorade (thank you Mike & Leslie).

As of Monday morning, the boys seemed to be making a little progress. Titus was happy and laughing this morning when I left for work. Cade seemed ok, while Tucker was still complaining his head hurt. Aidan was up and Noah was still in bed. And at this point, Becky and I seem to be ok - tired, but not sick.

Thanks for the prayers.

UPDATE: Becky is taking Titus to the doctor for a look-see this afternoon. He's a little more congested but not running fever and we haven't returned him to a full feeding schedule yet since we want to be sure the "retching" is done with. And, with the winter storm that is to hit Dallas tonight, we would rather have him checked out today in the event we are iced in tomorrow.

Donors Choose

Becky and I would like to share with you a special website and a way you can make a direct impact on Titus (and his classroom).

As I mentioned in my last post, Titus is a student in Frisco's Early Childhood School. He is in an Active Learning Classroom which means there are numerous items, toys, tools, therapy equipment to help the kids in the classroom learn. This isn't your average classroom by far.

But, as you can also imagine, the costs for all these supplies and equipment is not cheap. We know this first-hand since the toys/equipment for Titus at the house can be quite costly.

Ms. Lindsey, Titus' teacher, has a website where people can donate to the projects she has planned for her classroom. And, you can also see completed projects (with pictures of the kids). In fact, if you look now, you will see Titus and his classmates enjoying the finger painting which was a project funded by DonorsChoose.

Please have a peek at what Ms. Lindsey is planning and if you feel led, you can also have a part!

http://www.donorschoose.org/ellington

Finger Painting

Titus has been enjoying school. He's in the Early Childhood School (ECS) and is in an Active Learning Classroom (ALC). This past week, we had our Admission/Review/Dismissal (ARD) meeting to discuss his Individual Education Plan (IEP). By the time it was over, I felt I had learned more acronyms that when I worked at EDS.  Let's just say, it's a whole 'nother language.

But, we were very pleased with our ARD meeting and the goals/objectives and schedule for Titus. His teacher, along with all the therapist at school, have developed a plan to continue providing Titus with therapy during the school day.

And last Friday, Titus got to finger paint. I think you can tell by the pictures he really enjoyed it! And, he didn't get a drop of paint on him. I'm sure if we had tried this at home, paint would have been everywhere.

And, the lady in picture with Titus is Ms. Lindsey - his teacher. She is a very gifted, patient, and talented instructor with a heart for her kids. We are thankful for her.