Wednesday, May 27, 2009

A Dad's Tale

Yesterday started early - nothing like a 7am conference call with the UK the day after a holiday. I was on the phone for 3 hours in back-to-back conference calls. Becky calls me during the morning to let me know it was storming hard at the house, which meant pictures may need to be rescheduled, but the clouds disappeared, the sun came out, and by the time 4pm came, it was a nice, hot, humid 90 degrees.

After an hour outside with the photographer (who was absolutely fantastic), we come home to eat and then I took Aidan and Noah to swim practice.

As I'm sitting in the natatorium at McKinney High, it started storming again, which meant they shut the exterior doors. When the doors are shut, the humidity and heat in the natarorium rise drastically. Adding to the heat/humidity, is the fact that I'm sitting on metal bleachers. I have come to the conclusion that sitting on metal bleachers is as close to waterboarding as you can get in the civilized USA. After one hour of sitting on those bleachers, I do believe any parent in the world would confess to anything just to get off.

We come home and I sit down to feed Titus who is in a silly mood. He is just babbling and laughing. Since Titus is g-tube fed, when feeding him, you are basically sitting there until he's complete. Sometimes it takes 15 minutes, and sometimes it can take an hour.

And this is how the evening went.

Aidan: Dad, the pH balance is off in the fish tank. You need to come look.

Dad: Aidan, I'm feeding Titus, it will have to wait.

Titus: BBRRRRBBBBSSSSTTTTT (which is Titus-speak for a long passing of gas/poo).

Aidan: Dad, don't forget. We don't want any fish to die.

Dad: Aidan, I have to finish feeding Titus before I do anything.


Noah: Dad, my toilet is clogged up.

Dad: Noah, I'm feeding Titus right now. It will have to wait.

Noah: Dad, I need to go now.

Titus: babababa, lalalala,

Dad: Noah, there are 4 toilets in this house, find one.

Noah: George is Aidan's bathroom.

Dad: Then come downstairs or find the plunger.

Noah: The plunger is Aidan's bathroom.

By now, I have finished feeding Titus and take him to his room to change the poopy diaper. Noah and Aidan both come in.

Aidan: Dad, you need to check the pH balance.

Dad: Aidan, I'm up to my elbows in poo, it will have to wait.

Titus: bababababa

Noah: Dad, my toilet is clogged.

Dad: Noah, did you think I forgot in the last few minutes? I'll get to after I finish with Titus and check the fish. Use our bathroom if you have to go.

At this point, Becky shows up and I ask her to finish with Titus so I can wash my hands and check the fish and toilet. I added some pH buffer to the aquarium, checked the pH, and the tank was fine.

I go upstairs to Noah's bathroom and the door is locked.

Dad: Noah, can you unlock the door?

Noah: I'm changing my shorts!
(why this can't be done in his room, I've yet to understand - he has to change clothes in the bathroom). Noah opens the door.

Dad: I have the plunger and let me show you how to use it.
(why not use this as a teaching moment - every 11 year old should know how to unclog a toilet. I'm sure it's in the checklist for 11 yr olds at the back of "What Every Child Should Know Along the Way" - an excellent book btw.)

I slowly step him through how the plunger works and we unclog the toilet.

Noah: Dad, thanks. It's been clogged for two days. I've been afraid it was going to overflow everytime I used it.

Dad: 2 days? 2 DAYS! Why was it an emergency tonight? And why did you continue to use it?

Noah: I forgot.

Dad: (sigh) I'm going to bed!

Seriously folks, you can't make this stuff up.

Tuesday, May 26, 2009

Pictures Today

The boys have a sitting with a photographer today. We've had the booking on the calendar for the last 2 months and I think I spent the majority of the holiday weekend telling them to put sunscreen on so they wouldn't look sunburned in the pics (I kept getting the "ahhh - dddaaadd!). The photographer is coming to the house and will take pics inside and outside (if the rain is gone).

Titus came down with an ear infection two weeks ago which has since cleared up, but came down with an eye infection last week. He's been on antibiotics for the last few days, but his left eyelid is still a bit red/swollen - each day shows improvement, so by this afternoon, it should be fine.

And as an update to our list of routine therapies I mentioned last week, we now have 3 more to add to the schedule: 2 feeding therapies and one speech therapy a week.

I'll update a little more this week after the pics have been taken.

Tuesday, May 19, 2009

Weekly Routine

It's hard to explain the schedule and routine that we have around the household. There are times that we feel housebound and times we feel like we are always in the car (and the proverbial "we" is really more Becky than me).

Titus has therapy 4 times a week: 2 OT and 2 PT. One day a week we are able to have back-to-back appointments. And some weeks we have speech therapy. Once a month vision therapy comes to the house. And we are in the process of setting up feeding therapy. Each therapy session lasts 30 minutes to an hour (depending on the type). They do push Titus pretty hard in therapy, and there are days he let's them know his discontent. Fortunately, our day-time nurse or Becky's mom is able to take him to therapy so Becky can stay home and work on home-school with the boys.

Lisa, our day nurse, comes 2 days a week (generally Mondays and Wednesdays). She stays late on Wednesdays and either goes to church with us on Wednesday evenings or if Titus isn't feeling well, she stays home with him while we go to church. She has become one of the family and is incredible with Titus.

Vanessa, our night nurse, comes 4 nights a week generally between 9-10pm and stays till 7-8am. She watches over him during the night, then feeds and bathes him in the morning so that he's ready to go to therapy. Titus definitely knows his nurses and snuggles into them with a big grin when they are at the house.

And that doesn't even include doctor's appointments that are scheduled around the therapy appointments. Some weeks there are none, and some weeks there are numerous doctor's visits.

Our nurses, therapists and doctors have become part of our extended family. We can't imagine life without them. They are not only strong advocates/cheerleaders for Titus, but have become dear friends.

But that's not to say it wasn't difficult at first to begin working with all these new people. Becky and I both remember the first night Vanessa came to watch over Titus. We had not met her or talked to her - all we knew was her name and what time she was showing up. It takes a big step of faith to let a total stranger into your house and stay with your child all night. (And I had to learn to make sure I didn't walk around the house in my underwear in the middle of the night/morning). But after months of leaving him at night in the hospital while in the NICU/PICU, you learn to trust a nurse to care for your child.

And the same goes for therapy - to hand your child over to a therapist and watch them push and contort your child to a position that they may not like or may cause discomfort is hard to watch at first. But you know and have to believe, that this is the best thing for them. So you sit quietly and encourage him and learn how to do the same exercises at home.

But Becky mentioned something the other day which really resonated. She stated, "the best thing about having the nursing care is that they are able to handle those therapy needs during the day, and that allows me to go in and just be a mom. "

And for the parents of any special needs child, that probably speaks to the core of all they have to do. There are days you are therapist, coach, trainer, and teacher and you miss out on just the simple pleasures of just being mom and dad, just snuggling on the couch and reading a story, just playing simply with a toy (and not as a training/therapy exercise), just singing and rocking your child to sleep. And realistically, you do play the same roles for your other children, but with a special needs child that requires so much attention on the basics, the role of the parent sometimes gets lost.

So, to our fabulous nurses, therapists and doctors, thank you. We so appreciate you and they way you love on Titus. You have helped bring him so far and encourage us on how far he can go.

Saturday, May 16, 2009

End of the Week

We have reached the end of the week. After the pee, poo, and police, there's not much more left to say except that I realized I never provided an update on Titus this week. It's Saturday night, all the boys have had haircuts (including Titus), everyone has had a bath, all the boys are in bed (at 8:30), and it's quiet.

Titus turned 18 months this week - what a major milestone for our little guy. We found out Monday he has an ear infection, but you would never really know it considering how happy he has been. He loves to play and just jabbers and babbles with delight. No matter how crazy a day can go, nothing melts away all the worries of the day like his smile does. He is doing good in therapy and is improving on holding himself up, holding on when you put him on your shoulder and responding to you. Lisa (our day nurse) has been working on him with basic sign language and it thrills your heart to see him respond.

Last night though was one of the roughest nights we've had in months. And the thing is, Titus slept through most of it. In fact, looking back, the issues weren't with Titus, but more with his equipment. His monitor kept going off stating his heart rate was low. Except you would watch the monitor, and the heart rate number would bounce from 95 to 78 to 84 t0 102. Anytime it goes below 80, it beeps. So it would beep, then stop. Then beep again in 2 minutes. This went on for 3 hours. Becky somehow managed to fall asleep, but I was miserable between midnight and 3 am. I was getting up to check him every 5 minutes and as soon as my feet would hit the floor or I would get to his room, the beeping would stop and his monitor would show 100& SATs and heart rate at 95 (which is just perfect for sleeping). Honestly, it was like the monitor had a mind of it's own and just wanted attention ( at least a machine can't pee on the blinds). But as soon as I would get back in bed (and not a moment before), it would go off again. I finally had a moment of lucidity at 3am and put the sensor on his right toe instead of his left toe. And, it didn't go off for the rest of the night. Why I didn't have that flash of genius at midnight, I guess I'll never know. So know we've decided to watch and see if the monitor goes off more on his left foot vs. his right foot.

This morning, we took Titus, Noah, Cade, and Tucker to an event sponsored by ECC. It made me realize how fortunate we are to live in an area that has so many resources available to assist Titus and us as parents. And, it's always good to meet other parents with children who have vision or hearing issues (or both) and share stories.

Becky and I do have one major prayer request for Titus. He is still on oxygen - and we haven't seen a lot of improvement of him coming off oxygen since we have had the flu this past Jan. With some of the issues he has managing his secretions and his crazy airway, the doctors have mentioned a tracheotomy several times. We have decided to wait until the end of the summer and then revisit the issue, but I realized, I have not put this out as a major prayer request. So, I'm asking that you will join us in praying for his lungs and airway - that they improve to a point that we can wean off oxygen, that his apnea will subside and his airway will strengthen so that a trach isn't necessary.

And last of all, Ginger has a home (we think). One of our sweet therapists who comes to our home once a month has fallen in love with her and took her for a weekend date. Ginger was so happy to get in her car and drive off into the sunset. She was loving the individual attention she was getting. And, it thrills me to know we rescued a dog who needed a home and attention. She is not the same dog we brought home 2 weeks ago. We'll know Monday if she will be taking her permamently.

Thursday, May 14, 2009

Knock, Knock

Monday was a rainy day in Frisco - by mid-morning, it was coming down pretty hard. Since it wasn't thundering and lightening and since it's rained consistently for the last few days, Becky let the boys and dogs go outside to play in the rain, since it is one of the simple pleasures in life.

As I have stated before, with boys you get noise (and with girls you get drama!). Our boys love playing in the backyard, but there are times, they can get pretty loud out there (especially on Sunday afternoons in front of mom/dad's bedroom window when Dad is taking a nap). They have received reminders before that the neighbors probably don't need to hear them screaming (preciousness of others) and to tone it down.

Apparently on Monday they were pretty loud since someone called the police.

So, when the police kn0cked on the door, Becky politely asked if she could help them and they asked if everything was fine - and if any girls were in trouble and needed help. Apparently, one of the neighbors heard a girl screaming "HELP, HELP" which prompted the 911 call.

To which Becky had to tell them "No - no girls here - just a couple of boys whose voices haven't changed yet who were out playing in the rain." The police went next door to ask another neighbor who stated - "yeah, it was probably just the boys playing in the rain".

But, oh, the impact this has made on the boys. I don't think I will ever again have to ask them to keep it quiet in the backyard.

Wednesday, May 13, 2009

Who Pee'd on the Blinds?

Becky called me yesterday at work.

"There's pee on the windowsill and the blinds".

"Honey, how can that dog DO THAT?" I ask.

"It wasn't the dog." (phew - since I'm beginning to think I may never find a home for her). "It's the window in Tucker and Cade's room".

"Ahhhh, do you think it's Tucker peeing off the bunk bed?" By now, my co-workers are definitely eavesdropping on my conversation.

"No, I think it might be Cade?"

Since this window is about 4 feet off the ground, I'm thinking "gee, Cade sure has a strong pressure stream going there".

And then I get hit with the gender-defining question that I knew was coming.

"Why would boys do that?" Becky asked.

Well, sweetie, I've thought about this a lot during the last day. There's not a real answer except for this - they are boys!

See, all boys around this age learn the mystique of the stream. Now that they know how to control it, it's just not peeing anymore. It becomes a light saber (and all you boys remember the urinal troughs in first grade where you would cross streams with others in pretend sword fights), it becomes a pen you can write your name with in the snow, the possibilities are just endless. I'm sure it all starts during potty training when you give them the little pellets to aim for in the toilet.

I'm sure there are some adoption specialists out there who might think that this some deep-seated attachment fear from being abandoned by their birth mom and by peeing on the blinds they are expressing their desire to re-unite. I would say bunk to that.

I'm sure Dr. Sears would say it's an attachment thing and I should bring the child into my bed and co-sleep, and allow them to express their individuality in finding their own boundaries. To which I would also say bunk - if the boy is peeing off his bed - the last place I want him is MY bed.

I'm sure Love and Logic would say that I need to tell him I love him too much to let him pee off the bed and explain to him all the options, then let him decide. To which I would again say "bunk - it stinks and it's going to stop - because I DO love him too much".

And I'm sure my dear friends the Ezzo's would say that they are outside the funnel (to which I would agree - but I'm not going to give Tucker a funnel cause he would probably pee in it). But Gary and Anne Marie, I've gone back through the videos and books and haven't found this situation addressed (maybe it was one of those questions that ended up on the cutting room floor) - so maybe you could include it in the new video series. I'm sure Tucker and Cade would love to be in one of the videos.

Meanwhile, I'll clean off the blinds, bump up the couch times, and continue to pray that Tucker and Cade live to see 5.

Monday, May 11, 2009


Whatever you do, work at it with all your heart, as working for the Lord, not for men . . .
Col. 3:23

As I was getting ready for work this morning, that was the verse that resonated in my head. My work has been a bit crazy lately and I have had to spend a lot of time using skills that aren't my strong point - which at times, makes it very difficult to complete a job. When it's not my skill set or I have no interest in the task, I have a hard time doing the job. And yet, that's not what I'm called to do - as the Bible says, "whatever you do, work at it with all your heart".

So, after my morning coffee, I stepped under the hot water of the shower as I began to ready for the a rainy Monday.

"Honey, the dog poo'd in Noah's room . . . and then stepped in it and walked around. Can you come clean it up?"

The water suddenly ran cold and my thoughts turned to mush as I thought - "great start to a Monday morning". And, since I was the one who encouraged Noah to take the dog to his room for the night instead of putting him in the crate, I felt responsible and disappointed all at once.

I finished showering, put on my old clothes and went upstairs to clean up the poo. One of the problems with big dogs is . . . you get big poo. As I am walking upstairs, Noah informs me to not open the door since it's behind the door. I carefully open the door just wide enough for me to slip in (which as most of you know, is still pretty wide). And since this is the dog still adjusting to new dog food, well, let's just say, it wasn't as firm as it could have been.

You would think after 12 years of changing diapers that picking up dog poo would be no big deal. But I will say now, there is a difference between dog and boy.

I scooped it up and took it to the toilet and flushed it down. And maybe because it was Monday or maybe because God really wanted to see if I would live out Col 3:23, the toilet backed up. After I cleared that out, I went back to the tasks of scrubbing out the poo embeded in the carpet.

Fortunately, I had not eaten breakfast since the gag reflex was coming on strong this morning as I worked in Noah's enclosed room. I took a deep breath and continued scrubbing. A little soap and water, then some Mr. Clean and water, and some elbow grease, and the carpet was clean again.

And that's how life is, sometimes we have some great, fun tasks to work on and sometimes there's poo that's got to be cleaned up. And sometimes we need that reminder that whatever we do, we need to work at it with all our heart.

BTW, Ginger is still a great dog who needs a loving home (maybe sooner than later). We are convinced she thinks she is still a small puppy. She really wants to be a lap dog - and let's just say, it's really cute the first time she crawls up in your lap - all 50lbs of her).

Friday, May 8, 2009

Mavs vs Nuggets

Tucker and I were playing basketball on the porch last night. He said "You be the Mavericks, but what team am I on".

Since the Mavs are in the playoffs (sort of), I told him he was the Nuggets.

He continued playing and then yelled "Yeah for the chickens!"

Sigh - the child has had too much fast food!

Monday, May 4, 2009

Our Boys

Today was one of those hard days. My work is a bit crazy these days, and this afternoon Becky and I had to meet with our special needs financial planner. He has laid out a great plan, and we are thankful to have the resources and be put in touch with someone who can guide us through the special financial plan that Titus will need.
But to be honest, they are emotionally draining meetings to go through. We still need to sign the will/special needs trust and then continue all the documentation. But it was just one of those days, that you didn't want to go through it again.
And then, we come home to this. Tucker in his football gear, Cade with his beautiful smile, and the four oldest playing in the backyard. And Titus was just laughing as we played on the porch. And it's the reminder that this is why we do it. For the love of our boys.

Sunday, May 3, 2009


This is Ginger (and Noah). I rescued her yesterday. She had been dumped in the country with a litter of puppies. A family had found her and kept her until the puppies were weaned. They had found homes for all the pups, but since Ginger kept getting in their chicken coop, they needed to find a home for her. She's about 18 months old and someone obviously spent some time training her before they dumped her in the country. She sits, stays, fetches, is leash trained and from what we can tell so far, is house trained.

She was one stinky dog, so as soon as we got back to Frisco, we brushed her out with the Furminator and then took her to the groomer for a flea dip and bath. Since then, she's been living it up. She hasn't barked yet, did not get scared with all the thunderstorms, and just lays at your feet most of the time. She has a few cat tendencies - meaning that she comes up, puts her nose under your hand and wants you to pet her. And then she just stares at your with those big brown eyes.

As I've told the boys numerous times over the last 24 hours, she's a rescue and after she adjusts, and is fixed, we will find a home for her. Quita is not really thrilled about sharing the attention. She vacillates between totally ignoring her and protecting her toys.

If your interested in her, let us know. I do believe she will be a great pet.

Friday, May 1, 2009

Quiet Week, Busy Weekend

All-in-all, it's been a pretty quiet week. Titus has had some increased secretions, so we've had to suction a little more than usual, but he's been so happy the past few days. Last night, Becky took the 4 older boys to a play while I stayed home with Titus. After falling asleep in my arms after feeding and breathing treatments, I gently laid him to bed. . . And one eye opened, then the other, and then the toothy grin came over his face, and he started to laugh. That boy certainly knows his bed. And for the next hour, I could hear him laughing, cooing, and playing in his bed. He had a great night of sleep.

Cade's chin is slowly recovering. He's quite proud of his little scar.

And tomorrow, is one of those day's the boys dream about it. It's the Stonebridge Ranch Garage Sale. They can't wait to get there early and find all sorts of treasures.

And while they boys are there, I'm taking a risk that I'll let you know more about tomorrow. We've already been told we are crazy for doing it, but we are going to do it anyway.

Last of all, we aren't going to church on Sunday. It's closed. We've been told to not go to church (and not because of the swine flu). Instead, we are called to be the church this Sunday. It's Go and Be Weekend. I talked about this last year when the church did it, and we are doing it again. So, the church has left the building. And we are praying it will make a tremendous impact.