Friday, September 24, 2010

Titus Update

Titus has had a great week. Whatever virus he had last week that caused the increase in secretions has now worked it's way out of his system and he has been doing good.

On Wednesday, Titus had a scheduled appt with his pulmonologist. Dr G. was very impressed with Titus. He stated his breathing was the best he's ever seen it. We do believe it is because of the consistent breathing treatments and use of the Vest (vibrating/pulsating vest) twice a day.

Titus continues to make small improvement in therapy. He is taking more "steps" in the gait trainer and is repeating actions from games he has been taught. He occasionally also shows a little "attitude" in therapy when he doesn't want to do something. One of the items they are beginning to work with him on is picking up items with his fingers. Much like a young baby, he grasps everything with his entire hand - whereas, they are now working on training him to pick up an item with his fingers. We would appreciate your prayers in that area.

Titus also has a scooter now - although all the boys are enjoying rolling around on it. We are working on Titus using his arms to roll himself around.

Another area of prayer is for school. When Titus turns 3 in Novembe, he will be eligible to start attending school in Frisco. Becky and I have an upcoming meeting where they will evaluate Titus (although the teacher did come to the house with one of the therapists a few weeks ago to meet him). Part of Titus going to school means that the bus will pick him up and bring him home - which also means we need his new wheelchair ordered and delivered. None of our kids have ever ridden the bus to school. When Aidan and Noah were in private school, we dropped them up and picked them up each day. And even though the school is just a few miles from the house, my emotions about putting my precious little boy on the bus (even though it's specifically designed for kids with special needs) puts a lump in my throat. But the school is wonderful and will be very beneficial for Titus.

Last of all, Becky and I will be attending a special conference this weekend for parents of visually impaired children. It starts this evening, and runs through Sunday afternoon. And then there will be 3 more weekends over the next 6 months to attend. As difficult as it is to give up an entire weekend, my prayer is that Becky and I will meet other parents and be a source of encouragement to others.

And, on Sunday, our church will be nominating the first 4 members of our Pastor Search Committee. Your prayers on this process will be much appreciated.

Tuesday, September 21, 2010

Occupational Therapy

Here's a new picture of Titus at occupational therapy - loving his swing!

Friday, September 17, 2010

Why Titus had Breathing Problems

Titus is doing much better - still a bit of congestion and very low-grade fever off and on, but his breathing has improved.

And we think we know why. In the house, we have a large liquid oxygen canister. It is refilled every week, but can usually last 2-3 weeks if we needed it to. We have a 50 ft. cord attached to the container which allows us to take titus all over the first-floor of the house without moving the canister (very heavy - even on wheels).

Wednesday night, after Becky and Jody had left for the ER, I coiled up the oxygen tubing so that it wasn't on the floor to be trampled on by dogs/kids. As I was coiling it up, I noticed a few places that were rough, possible indicating a puncture/tear, but as tired as I was, didn't think much about it till yesterday.

Yesterday, I was caring for Titus and his SATs were low again, and even after turning up the oxygen, they were not improving. And that's when I remembered about the rough places on the cord. As soon as we replaced the cord, it was amazing how his SATs jumped up. Titus had a great night - going to bed at 7:30pm and sleeping till 8pm and his alarm only went off twice last night (we consider that a GREAT night). Which also meant that Becky and I had a great night of sleep.

Thanks again for the prayers!

Thursday, September 16, 2010

80's on 8

My "man-van" has satellite radio. When the free subscription to satellite radio ran out, I let the subscription expire. This past summer, I received a great, discounted offer to turn it back on, and since the van is paid off and I will be driving it for awhile, I decided to treat myself and renew my subscription.

I will state that one of the nice things about the van is that the stereo is pretty good - and with all the extra empty space in the back, the bass can really boom and echo. There's many a day I miss a cell phone call in the car because I have the radio turned up pretty high.

A few weeks ago, I had to pick up Aidan at church after a youth activity. As I drove across town, I had the radio turned up high on the "80's on 8" channel. Yes, that dates me - but it brings back a LOT of college and early single day memories from the 1980's.

As I pull in the church parking lot, many of the youth are in the parking lot milling around or waiting to be picked up. I drove right up to where Aidan was, music cranked high, and windows down - thinking I was a rather cool dad with my thumping radio.

Aidan quickly got in the car, turned down the radio, and gave me a look, and with that disapproving voice said "DAD!"

At that point, I looked down and saw the song that was playing ever so loudly as I pulled into the parking lot. Let's just say it was a certain Madonna song about her comparison to a young innocent, unmarried girl - enough said.

I sheepishly stated, "I'm sorry".

And Aidan sighed, "That was SO embarrassing!"

Oh, What a Night!

Let me see if I can accurately recap the last 24 hours.

Titus has been doing great, but the last few days, he has been congested. We haven't had to suction much during the summer, but over the last few days, he's just been gunky (and so have I). He's been running a small fever off and on all week.

Titus has been doing great at Therapy - taking more steps at Physical Therapy, and loving chocolate pudding at feeding therapy.

Yesterday, he was a "live wire". He was chattering and interacting with people at church - basically just a happy camper.

As we got home from church, our friends, the "K's" drove up. They are driving from Minnesota back home to Houston and were staying the night. And as soon as we got in the house, Tucker and Cade had to show Ashley the baby rabbit.

Now, we have rabbits (and baby rabbits) in the backyard all the time. The last time we found baby rabbits, Jude thought they were dog toys and threw them around the yard and then ate them (lovely dog - btw, Jude has a new home). This week, we found another batch of baby rabbits - and these were larger than the ones we had found before.

And, that's when Becky told me that they had brought one inside the house, put in a bin, and were feeding it all day yesterday. (and yes, Karen D. - they named him Stu).

Tucker and Cade ran to the bin on the counter to show Ashley the rabbit, and that's when the squeals start.

And the mayhem started.

For the next hour, 9 kids searched the house, high and low, with flashlights looking for this tiny rabbit. I was convinced that Quita had found it first and enjoyed it as an appetizer. After an hour of searching, no rabbit could be found and the kids were distracted with toy guns and running around the house. It's was now 10pm and I had used up all my words for the day about 6 hours prior, so I gave the kids a 15 minute warning and advised them to prepare for bed (which they did).

As soon as all the children were in bed, Ashley walked in holding a tiny bundle of fur. She found the Stu on the kitchen counter behind a potato chip bag (I'm sure cowering in fear from the noise and children). He was returned to his bin with a lid, and placed outside for the remainder of the evening. We didn't want to tempt Quita for a midnight snack.

While the rabbit hunt was going on, Becky and Jody had gone to Titus' room to feed. And that's when Becky noticed Titus breathing was erratic and he just seemed to be breathing shallow. Over the course of the next few hours, his breathing worsened, we turned his oxygen up, and we did a couple of breathing treatments. At 1:30am, Becky stated, "I'm concerned", to which I replied, "Go pack".

Becky and Jody rushed Titus to the ER and I tried to go back to sleep - but that's not an easy task to do. As I laid in bed, I prayed. I prayed for his breathing, I prayed for the doctors and nurses in the ER, I prayed for peace and awareness for Becky and Jody since I knew they were tired.

I eventually drifted off to sleep, but 4:30am, I heard a familiar beep. After few minutes, I heard it again. I looked up and saw a faint light under the door. My first thought was "did I not turn off all the lights and Titus' equipment?". I then heard the door open, and Becky walked in (by the light of her iPhone.)

By the time Becky had driven Titus to the ER, he was awake and alert and breathing better. The chest x-ray showed his lungs as clear, and since he was not running a fever at the time, they sent them back home. He slept peacefully the rest of the morning and then was off to therapy at 7:30am.

Titus still has some congestion and after a trip to the pediatrician this morning, they believe he has a virus, so our prayers are that it begins to clear up and his breathing remains strong.

Tuesday, September 14, 2010

Football Season

Noah is playing football this fall. It's his first time to play, while all the others have been playing on the team for several years. Although not the biggest player on the team, he is the tallest (actually, he towers over a few of the other kids). Sixth Grade is funny like that - you have some kids that hitting that growth spurt and others that haven't. I do believe Noah has grown 3 inches over the summer. Everytime we turn around, he seems to have outgrown something.

Last week, the team received their jerseys and the parents were asked to present them to their sons and say a few words.

And this is what I told him.

Noah - You have persevered through the heat of practice to learn the game. And not once have you ever complained. You have done everything the coaches ask, exactly the way they ask. You listen to their instruction and have worked and practiced to improve. But more than anything else, you have been an encourager to your team. I hear your voice over all the others encouraging your teammates on. I have seen you stay late to encourage a player who was running sprints. I hear you encouraging the one guy who is lagging behind to not give up. And that's why I am proud of you - you persevere and you encourage.