8 Months Old Today

Titus Beck is 8 months old today. Any my little buddy celebrated by sleeping 5 hours last night without oxygen! Titus has gotten quite good about pulling his canula out of his nose. On Friday, he not only pulled it out of his nose, but also ripped off the band-aid-like adhesives that help hold it on his face. Last night, we went to check on him before heading to bed and his oxygen sats were at 100%. I then checked his face and sure enough, his canula was below his chin. We decided to wait awhile and test how long he would go since he was in a deep sleep. And, he went 5 hours. I checked him on through-out the night and his sats were still 100% - so this is great progress.

He continues to do better about sleeping through the night - no longer waking at 4-5am for playtime. And that means, we are all getting more sleep. What a blessing!

In the last few weeks, we've had several important things occur. Titus has been fitted for hearing aids and should be getting those in the next few weeks. This is just part of the therapy needed as we progress toward the cochlear implants. It may/may not make much of a difference in what he can actually hear, but it's part of the process.

We have been approved for Medically Dependent Children's Program (MDCP) in the state of Texas. But there are still several steps that have to be completed. Titus does have Medicaid coverage as of June 4, but to be finally approved for MDCP, he will need to spend the night at a state-approved nursing home. (Actually, he has to check in by 5pm and can check out at midnight). But for those things to happen, there is a whole lot more of paperwork to complete and fill out. We are working through that this week. MDCP will allocate funds toward at-home nursing care for Titus along with other benefits. And Medicaid will pay for therapy whereas my insurance only paid for 20 therapy visits (already exhausted).

As we look back over the last 8 months, we see how God has graciously provided for us and Titus. For example, we have 2 incredible women who have been donating breast milk for Titus. We are able to mix that with formula for our feeds. We believe that has helped him tremendously. In the last 8 months, we've only purchased formula twice since others have donated boxes/cans of the special formula he needs.

But moreover, we've been given the opportunity to be a witness. Numerous times, Becky has been at the doctor's office or out with Titus and people come up and ask "how do you do it". Everyone seems to be amazed that we can function with Titus needs, and keep up with 4 other boys, homeschool, teach parenting classes, and still have fun. The question comes from other parents, from medical professionals, from friends - and the answer is always the same. If we trust that God is sufficient and we trust in His plan, then who am I to challenge/question that? If God has stated he will supply all my needs, who am I to be demanding? If God has stated that Titus is "wonderfully and fearfully made", then who am I to say that he's not? If God has stated "fear not", then who am I to stand here afraid of the unknown?

That doesn't mean we haven't been sad, it doesn't mean we haven't shed numerous tears, it doesn't mean we haven't cried out to God, it doesn't mean that there are days we've been depressed. But it does mean that we have learned (and are still learning) to trust in God's plan and to continue to let our light shine in a dark world.

2 Corinthians 4 has always been one of my favorite chapters. And verse 16-18 states "Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal."

Please pray for these things:

• Paperwork for MDCP will be completed and accurate
• Nursing Home visit can be scheduled and completed soon
• Therapy appointments can be scheduled and re-started soon
• Titus breathing will continue to improve so we can get off oxygen
• Aidan and Noah have Fine Arts camp next week - both have speaking parts and are incredibly excited.
• Family vacation on August 28 - Sept 3 to Family Camp in Indianna

Praise for these items

• July is our month of birthdays - Tucker turned 4, Noah turned 10, and Paul turned "old". (Ok - Paul turned 47)
• Becky and Paul celebrate 14 years of marriage on the 16th
• Aidan and Noah (along with their cousin Nathan as sponsor) had a great time at Journey Camp last week.

We've stated before, but we want to repeat how incredibly blest and thankful we are for friends who continue to lift us up in prayer on a daily basis. We are so humbled.

Blessings,

Paul & Becky

Pulmonologist Visit

Just a quick update about Titus' appointment with the pulmonologist yesterday. Dr. Gelfand was pleased with his progress and has subscribed a different medication for us to try this week to see if it will help his lungs and get him off oxygen. The medicine is also a diuretic, so we are concerned that it will not affect his weight too much - Titus weighed 13lb 9oz yesterday. And, he decreased the number of times per day we can give Xopenex (with the nebulizer) and CPT. We've been doing it 4 times a day, and he suggested we back it down to twice a day. We were thrilled about that since that gives us 1 hour a day back in our schedule and allows us to work on other things with Titus during that time.

And, we found out this morning that we OFFICIALLY APPROVED for Medicaid as of June 4, 2008. Since our insurance only covered a limited amount of therapy and we had already used it up, we've been waiting for approval so we can start therapy again. It also will help with all the treatments and progress toward cochlear implants. We have a fitting for Titus for hearing aids coming up.

Titus had a rough night last night - we think he needed to poo and so he was kicking his feet and arching his back a lot during the night. It was the first night in weeks that his monitors were going off every 15-30 minutes.

We are off to Cedar Creek Lake for the holiday and to celebrate Noah's birthday. He's our firecracker born on the 4th of July. He's turning 10 and could not be more excited!

Prayers for this Week

As I mentioned in the last email blast, Titus' night sleep continues to improve. His monitors still go off, but mainly due to him moving around in his bed and not because he's awake and playing in his bed. We are all resting better with him sleeping better, but still covet your prayers in that area.

Titus' breathing is showing signs of improvement. He's on 1/2 liter of oxygen (which is a very, very small dose), and we continue to find him time to time with his canula pulled out of his nose and his Oxygen SATS high. So, we feel that his lungs are showing improvement.

We do have an appointment this week with the pulmonologist for a check-up on his breathing. This is a major prayer concern for this week. Our goal is to get Titus off of oxygen and we are praying the pulmonologist sees the results that we see and/or provide a course of treatment to help us attain that goal.

Titus had some hearing tests conducted last week. Basically, they put him in a booth, subjected him to different sounds at varying frequency's and noise levels to see how he responded. Becky was not sure how a 7 month old would respond (we did similar tests with Cade and he was too busy playing to pay attention to the noises). But, he did respond to really loud/vibrating types of noises - which still confirms he's profoundly deaf. But with hearing aids, his hearing may go from profound loss to severe loss. They have to fit him into hearing aids prior to cochlear implants - so this is all part of the process.

We do know this - we are dog-sitting our neighbors Maltese (Frostie) who has the highest pitch bark you have ever heard. And Titus definately perks up and starts looking around when Frostie is barking. All of those things are encouraging to us.

And, Titus is still showing interest in the bottle. He sucks about 1/2 ounce during a feeding. That's really not a lot, but it's keeping him interested in and we continue to work on it. We are also continue to introduce new tastes on his tongue - so far applesauce is a hit.

Thanks again for your prayers. We can see God's hand moving in his life.

Sleeping Through the Night

I almost hesitate to post this, but Titus has slept through the night the last 2 nights. He still moves around a bit, which set his monitors off, but, he is not awake. He had gotten in the habit of waking around 2am for an hour and then again around 4am for about 2 hours. We would hear him in there laughing and babbling, playing with his feet and hands (and generally pulling his canula out), but for the last two nights - he has slept.

Or, I have slept so deeply that I didn't hear him.

Becky has been working at a showroom for the Flower and Gift Market at downtown Dallas for the last several days. As she was leaving for work yesterday, Tucker asked her where she was going.

"I'm going to work and daddy is going to stay home with you all day", she answered.

"No, Mommy, Daddy's go to work, not Mommy's - you STAY HOME!", Tucker replied.

Needless to say, he fell apart as she was driving off, but quickly recovered and life went on.

Of course, Paul is exhausted after a full day with the boys, cleaning the house, and cooking 3 meals.

The Reality of Routine

Titus has been home from for 2 weeks now after his Glaucoma Surgery. He is doing good - and his eyes are clear and not swollen. It's still too early for them to test his vision and see if there is any permanent damage to his eyes. He is still on oxygen (at very low settings), and begins to struggle after an hour if we turn it down or off. The pulmonologist believes a small portion of his lung may have collapsed after the last surgery and it's just taking awhile to get back. We are becoming quite adept at carrying him around the house with this oxygen hose trailing behind and taking him to the doctor/church with portable tanks.

It is wonderful having him home, but also tiring. In the course of the day, Titus is fed every 3 hours (10-30 minutes), he has a nebullizer treatment 4 times today (15 minutes) followed by CPT (15 minutes - continuous percussive therapy - where we pound his back with this suction cup thing), another breathing treatment twice a day, eye drops 4 times a day, cleaning his jaw pins/g-tube 4 times a day, and general therapy on motion/movement throughout the day. We have reduced his feedings at night from 2 feedings to one - which is a huge blessing to only have one of us get up once a night. Becky slept all night last night for the first time in weeks. Since Titus is on oxygen, he is also on a pulseoximeter - which monitors his heart rate and oxygen saturation levels. But, if Titus is kicking his foot (where the monitor is attached) or squirming, the meter doesn't read, and the alarms go off. Imagine this happening about 20-30 times a day - generally at night! The doctor also suspects that Titus may have allergies which is causing the excess congestion. We have a suction machine to help with that several times a day if we feel it is affecting his breathing. The doctor is allowing us to give a very small dose of Benadryl to help with congestion. On top of the daily routine, Titus generally has 2-3 doctor's appointments during the week, which also means the schedule needs to be adjusted to fit within the time frame and drive to the doctor.

And, along the way, there are 2 other boys that need to be home schooled and 2 3-year olds that need structure and routine (and long naps in the afternoon). The reality of the routine can be overwhelming - and on certain days it is. The regimen that we follow cannot be deviated from and it's become an incredible lesson in discipline and obedience. Becky and I were discussing that it's easy to follow a routine if you know where it's headed, but it's difficult to consistently day-after-day follow the same routine and not know what the end result will be or see immediate results. We have to remind ourselves that everything is baby steps with Titus. And we received sage advice to celebrate those baby steps - he is not going to hit the same developmental milestones in the same time frames as other babies his age. Others have told us that the first year of child with special needs is the hardest. And, we can see how that can be true.

As I was contemplating our routine, I thought about Noah. It took Noah 120 years to build the ark - and he had no idea what the end result was really going to be. And yet, the Bible does not tell us much about that 120 year span. But for 120 years, Noah cut down trees, made lumber, prepared a foundation, built a boat, created barrels and barrels of pitch to coat the ark with . . . He did all the tiny tasks - day in and day out - to complete the plan exactly as God told him too. Along the way, he had 3 sons, raised those boys, watched them get married, maintained his marriage and livelihood and relationship with God, and still built the ark. I wonder - did Noah get tired of cutting down trees and picking out the splinters from his hands? Did he ever question why he was doing it? Did he ever get rid of the smell of pitch/tar? Did he ever take a day off? Did he ever question God's plan? It will be interested one day in Heaven to sit down with Noah and ask him those questions. But what I do know is what the Bible tells me "Noah did everything just as God commanded him." Noah must have been faithful with all the little tasks given him to be provided with such a large task. So, we carry on with the little tasks. They may be tiring and we may not know the results for weeks/months or even years to come, but I am reminded - Noah never stopped building that ark until it was complete.

The next few weeks will be busy with upcoming tests and surgeries. We wanted to let you know how to pray specifically for these things and also let you know how God is answering your prayers.

Please pray specifically for these items:

• Titus will have a swallow test done today. The doctors did an initial swallow test very early on and this is an update to see if he will aspirate (water/food/saliva) into his lungs versus down his esophagus into his stomach. If this is successful, they will start more therapy to introduce him to swallowing liquids. This is just one step to getting him off the feeding tube. Titus does great with a pacifier and he's very close to sucking his thumb (he gets those hands up to his mouth).
• Titus will have his follow-up jaw distraction surgery on April 2 at Medical City Dallas. This surgery will be to remove the devices put into his jaw that stretched it out. Specifically we pray he remains healthy prior to the surgery, that the bone that has been formed through the stretching will continue to harden, and for no complications after surgery from infection. Also, due to his breathing issues, we are praying that another round of anesthesia does not set him back. Dr. Genecov and his incredible staff at the International Cranio-Facial institute will be doing the surgery.
• When he goes in on April 2, we are also coordinating with Dr. Peters, the audiologist for a 2nd ABR test. When they did the initial test, Titus was not sedated, but for this test, they need him fully sedated. We have asked if they could coordinate this with his other surgery to only anesthetize him once instead of twice. Dr. Peters will be putting together the plan for his hearing (hearing aids to stimulate the ears - cochlear implants in the future), but we have had to delay these appointments due to the RSV and glaucoma surgery.
• Titus has a one-month follow-up/surgery in Houston with Dr. Feldman for his glaucoma on April 14. We will drive down to Houston for the weekend, have the appointment on Monday with surgery that afternoon. Again, we are praying for quick recovery for his eyes and his breathing.

We also want you to offer up praise and thanksgiving for the following answered prayers:

• Titus has Medicaid coverage up to Feb. 29, 2008. This should cover the remainder of bills we are responsible for after our primary insurance has paid. Since we have already met the yearly out-of-pocket max, we aren't too concerned about the remainder of the year since insurance will cover, but having Medicaid coverage for the initial 54 days in NICU and the 33 days with RSV will help tremendously. We are still working on full-time Medicaid coverage and SSI benefits, but for now, this is a step in the right direction.
• We have a new Suburban to carry everyone in. I had mentioned that we were looking for a vehicle that would allow for all of us to be in the car together. God provided in an incredible way allowing for us to purchase a car at auction through a dealer. So, we are the proud owners of a new (used) 2008 Tank (ok - it's a Chevy Suburban). The boys and I spent last Saturday re-organizing the garage so that we could park it there (with just 2 inches to spare). And last of all, please say a prayer of thanksgiving for my incredible wife who has a birthday on Friday, March 28. My life would not be complete without her and I treasure the day she was born (and the fact that she's SO much younger than me - she keeps me going).

Coming Home from Houston

Becky and Titus (and her mother, Elizabeth, and Aidan and Noah) will be coming home from Houston tomorrow after they see the glaucoma surgeon for a follow-up. It's been one week since Titus had surgery and his eyes look good, but he has stayed in Hermann's Children Hospital in Houston for the past week trying to get his breathing back to normal and get him weaned off of oxygen. He is on the very lowest dosage of oxygen they can provide and yet, when it's turned off, his oxygen saturation, starts to drop. It was decided today to send him home on oxygen and we can then work with our pulmonologist in Dallas to get him weaned off.

I drove to Houston this past weekend to see Becky and the boys. It had been a long and very quiet week at the house with everyone gone and it was great to see my wife and boys again. It is absolutely amazing the difference the surgery has made in Titus' eyes. We did not realize how swollen/bulging they were from the glaucoma until now.

But, going into surgery, Titus had some sinus drainage - either from allergies or cold - that was causing some congestion issues. Thankfully, it never went into his chest, but during the first 5 days of the hospital stay, the respiratory therapists were having to suction his airway out every few hours. On Sunday, this started to resolve itself (after a small dose of Benadryl). And, now, the major issue is weaning him off of oxygen and getting his feeds back to where he was prior to surgery. We also know that Titus will have surgery in 3 weeks to remove the jaw distraction devices, so we know we could easily have the same issues with weaning him off of oxygen again. But fortunately, we will be in Dallas with our team of doctors that are very familiar with him.

Please pray for the following:

• Rest for Becky and Elizabeth tonight
• Safety in traveling back to Dallas - it's about a 4 hour 20 minute trip
• Titus oxygen levels and breathing will return to normal levels without having to supplement with oxygen
• All at-home supplies for oxygen will be delivered in a timely manner
• Strength and continued healing for Titus - he will have his 5th surgery next month and needs to maintain his health before going back in again
• Thursday's appointment in Dallas with our pulmonologist - that he will provide the techniques and treatment necessary to get Titus off of oxygen
• Adjustment as we get back to our routine at home - Paul has to travel to Atlanta on Thursday for a one-day meeting, but thankfully, the weekend is close.

And, we are forever grateful for dear friends, Mike and Jody Krogstad from Lake Jackson, who have kept Aidan and Noah for the past week, kept them going on school, brought them up to the hospital, and provided such incredible support. We are also so very thankful for my parents, Lou and Nolon Daily, who have kept Tucker and Cade (2 VERY active 3 year olds) for the last week. We are also thankful that Becky's mom, Elizabeth Temples, was able to make the trip to Houston with Becky and provide 24/7 care and support for Becky and Titus. And, for new friends, Suzy Gidden and Nan Grantham, who brought food/snacks up to the hospital. It was also a blessing to have Cathy Blue and April/Stirling Vineyard come up to visit during out stay in Houston. And, we were so blessed with the incredible doctors/nurses/respiratory therapists that we had at Hermann Children's Hospital. In your prayers, please thank the Lord for the incredible blessing of these people and ask for God's continued blessing to flow down on them.

Home Again

Titus came home Sunday evening. As soon as came through the door, he seemed to relax and go into a deep sleep. It's like he knew he was back home where he belongs.

Tucker and Cade are over the flu and came home today. I am better, but have quarantined myself away from Titus until I know I'm not sick anymore. I wear a mask inside the house and am sleeping upstairs. Quita won't even sleep with me.

This still leaves the majority of the burden for caring for Titus on Becky's shoulders. She is so glad to be home and back in her own bed, but still feeds Titus every 3 hours and gives him his nebulizzer treatments every 3 hours. So, she's generally up for an hour, then tries to get some sleep in between the next feeding. She has also re-scheduled all of Titus' doctors appointments for the 3rd time and still finds time to love on all the boys and me. I've said it before but will repeat - but Becky D is the MOST AMAZING, AWESOME, PHENOMENAL, FANTASTICAL wife, mother, sister, daughter, and friend there is. She is filled with FABULOSITY!!!! And, I love her dearly - she still takes my breath away.

Titus has 3 doctor's appointments this week: one with the pediatrician as a follow-up, one with the pediatric pulmonologist, and our initial meeting at Scottish Rite. The pulmonologist will be checking his lungs and airway. Titus' airway is still S-shaped - and can still be compromised easily. The jaw distraction surgery has improved his ability to breathe dramatically, but the since it's S-shaped and after the RSV, he still has some struggles.

Scottish Rite will be examining and taking a base-line for Titus. As a reminder, Titus has a hemi-vertebrae at the base of his spine. This can cause curvature of the spine as he grows. By tracking a baseline and observing as he grows, they will be able to determine the best ways to treat for this. Titus right foot - which was almost club when born - has turned back to almost normal position. They will also be checking that to see if any casting needs to be done.

Over the next few weeks we have more appointments with the audiologists to discuss the flight plan for his deafness. And, we also have an appointment with the pediatric opthamalogist. The doctors have mentioned some concerns about his eyes, but there is no diagnosis yet. We do know all the "parts" are there and we know he responds to light/dark, but they will evaluate vision concerns. We will have appointments with the occupational therapists to work on his sucking/swallowing exercises so we can move past the g-tube, along with other therapy to address the delays of spending weeks in the hospital. We are also working on bumping up the amount of his feedings. When Titus left the PICU, he weighed over 9lbs 3 oz, but lost down to 8lbs 6 oz when they stopped the continuous feeds and sedation. He's burning up calories like crazy and we need to fatten him back up. He's up to 78cc every 3 hours, but we are trying to get to 90cc.

All of the above are prayer requests. Managing the doctors appointments and therapy along with caring for Titus and the boys make for very busy days and nights. But God is good, God has a plan, and God is in control.

Surgery Complete

Titus is out of surgery and everything looks good. The have to tape his ears up so they aren't irritated by the screws and between that and the after-affects of surgery, he's feeling a little puny. The are giving him some pain medicine but expect by tomorrow he should be fine - it's just hard to see him like this. Right now, he's resting peacefully.

The surgeon was able to push out his jaw 4 mm during the surgery which will already make an improvement in his breathing. He came out of surgery extubated and just has the regular canula for some oxygen. On Monday, they will teach us how to turn the screws and we will turn the screws a 1/2 turn in the morning and a 1/2 turn in the evening for the next 12 weeks. This will push his jaw out up to 3 centimeters. At the end of the 3 months, they will do another surgery to remove the screws.

This morning, right before surgery, Titus' g-tube came out. The g-tube is held in place inside his stomache with a small balloon inflated with saline. The balloon had ruptured and his g-tube fell out. The nurses had prepared for this and had ordered an extra g-tube that had just come in the day before. Two nurses and the doctors came in, examined Titus, prepped the g-tube and then the doctor stated, "let's let dad do this" - in which I promptly replied " let's let mom do it!" Becky took it and popped it in like a pro (and I stood several feet behind and applauded her and didn't pass out).

Thanks for the prayers today. After everything was over today, Becky and I both fell asleep in the chairs in his room. I think we all (including Titus) needed some rest.