Thursday, May 29, 2008

Somebody's Praying

Many of you have emailed asking for an update from the last few weeks of doctor's visits. Here's what we know to-date.

On Sunday, May 18, Becky, Titus and I drove down to Houston for his visit with the glaucoma specialist. We had a good trip and stayed at the Hilton next to the hospital (still using all those Hilton Honors points I have from years ago of traveling). Early the next morning, we showed up for his evaluation under anesthetic with full expectations that they would take him straight into surgery. We had the same anesthesiologist we had last time (who is wonderful) and a relief to us to have someone who knows Titus and his condition. After they took him back, Becky and I settled into the waiting room expecting to be there for several hours. You can imagine our surprise when Dr. Feldman came out 45 minutes later and said "his eye pressures are fine - no need for any further surgery - you're free to go home as soon as he comes out of recovery". We were stunned (and asked him to repeat it all again). This means that the channels they installed in the two previous eye surgeries are doing the job of regulating his eye pressure and therefore controlling the glaucoma. Titus bounced back from anesthesia pretty quickly and by 11am, we were back in the car on our way back home to Frisco. All I can say is, somebody was praying.

Titus will still have very limited vision - if any at all. Although Dr. Feldman will not use the word "blind", he was very clear that the optic nerve was never fully formed, there was damage done by the glaucoma, and at this time, there is no known cure/surgery for this. Until Titus can communicate, we will not know how much sight he has. We do know he responds to light and dark, and we feel he can see shapes/shadows, but time will tell. We are still coming to terms with this. It's not like we didn't know this, but to have it finalized by the doctor is still hard. I began doing research on deaf-blind children and programs, but had to stop. Like with many things we've learned, we have to forge ahead and make a plan, but there are some days, you need to be quiet and grieve a bit.

The following Wednesday, May 21, Titus had his MRI/CT scan. This had been previously scheduled for earlier in the month, but was postponed since the machine had broken down. It was another early morning to get up and be at Medical City early, but they were right on schedule and by noon, we were back home. We had 3 doctors requesting the results of the MRI/CT scan: the ENT (Dr. Bauer) was the primary doctor since he's looking to see the make-up of Titus ears and if he will be a candidate for cochlear implants, the Neurosurgeon (Dr. Price) who would be checking the status of the Dandy-Walker variant (cyst at base of brain) and determine the need for more MRIs and would have input into the cochlear implants, and the Geneticist (Dr. Cramer) who is still looking for clues of any syndromes that Titus may have.

Yesterday, the assistant for the neurosurgeon called to let us know that Dr. Price had reviewed the MRI and did not detect the Dandy-Walker variant (cyst). We know that last month when we met with her, she had reviewed the MRI from when Titus was 2 weeks old and saw the cyst then. We know she talked to us about Dandy-Walker (which can cause severe motor skills delays) and now she is telling us it's not there and she doesn't need to see us back in her office for a follow-up. If we were stunned when Dr. Feldman told us his eye pressures were fine, you can only imagine how stunned we were to hear this news. In fact, I'm still in shock. Again, all I can say is, somebody's praying and God still has the final word.

We heard today from the ENT and have a scheduled appointment with him on June 5th. He has not received the MRI results yet, but will by the time of our appointment. Our prayer is that Titus is a candidate for cochlear implants - and if so, we can make a plan for those to be implanted.

Paul had applied for and was approved for intermittent FMLA at work, which means he can now take time off when needed (up to 12 weeks) to help attend to Titus. And, we are still waiting to hear if we were approved for MDCP (Medically Dependent Children's Program). We have had our nurse visit and social worker visit a month ago, and are awaiting the pediatricians office to complete their paperwork. Once we are approved for MDCP, Titus will be approved for Medicaid - which will also allow us to start therapy back. Currently, our insurance only pays for 20 days of therapy (which we have almost exhausted) and considering that Titus will need several types of therapy (speech, occupational, and physical) we need to get him into a good program that will begin working with him. Becky had a visit with one of the therapy centers yesterday and was very pleased with how they worked with Titus (they wore him out after 15 minutes), but also how they showed/instructed her to work with him. They were also very encouraged on how's he's progressing. They feel his development is around 2 months of age - which is how we feel he's been responding. He is lifting and holding his head more and more - and if on his belly, can kick those legs to scoot around a bit (ok, maybe an inch - but I was cheering him on big time). And again, I know somebody's praying for his development.

We also have set up an appointment with a financial planner who specializes in special needs trusts. If Titus is approved for MDCP and Medicaid, he can not have any assets or savings and cannot be the beneficiary in our will, or it will immediately disqualify him and he could lose his benefits for life. A special needs trust can be set up legally to assist in some ways and we will be learning how to do that along with having our will updated. Honestly, as a father, having to remove him from the will has really hit me hard, but I know his heavenly Father has it all in control and will never remove him from his spiritual inheritance.

This week, Becky and Paul have come down with a bit of a cold/drainage and Titus has caught it. So far his lungs are clear and his breathing is fine, but he has a little hacky cough and we are suctioning him every few hours. But even with a cold, we are seeing marked improvements in his breathing. He's still on oxygen, but his levels are consistently high. We are testing him at lower levels or without oxygen and he is going longer without each time. And even with a cold, Titus is sleeping more and more at night. Last week, his monitors went off only 1-2 times a night - which is a HUGE improvement over 2-3 times an hour. We actually have gotten some good sleep and I know (based on several emails we have received) many of you have been praying for rest for us (please DONT" STOP! )

As Titus turned 6 months old, I couldn't help but reflect back over the last 6 months. Life has certainly changed, we have learned more information, met more doctors/nurses, spent more times in hospitals than ever imagined, have had (and continued to have) sleepless nights, felt completely helpless at times and have shed more tears than you can imagine. But, we have also felt peace, felt the prayers, and know we have been carried through by countless prayers of people we know and don't know. As I stated once before, we have always wanted this to be a journey of faith and not a journey of fear. And, one of the most beautiful gifts we have received is that Titus is the happiest, most content baby you will ever meet. He rarely cries, he greets you with a huge toothless grin, he laughs and giggles, he is filled with joy and we are blessed to be his parents.

At our Father-Son campout 2 weeks ago, one of the boys (Christian Loth) came up and asked me how Titus is doing and let me know he's still praying. At Becky's GEMS cookout, numerous parents let us know that their children still pray for Titus every night. So Christian and all you boys and girls that are praying for Titus - thank you! God hears your prayers and is answering them in a mighty way.

Please pray for these things in the next few weeks:
  • Our appointment with the ENT on June 5 and that Titus will be a candidate for cochlear implants.
  • Our application for MDCP will be approved so we can begin therapy and continue home health care visits.
  • Titus' lungs will continue to strengthen and we can wean him off of oxygen.
  • Titus, Becky, and Paul with their colds.
  • Becky and Paul as they deal with all the diagnosis, planning, and change.
  • Guidance and direction as a special needs trust is put into place and wills are updated

Thursday, May 8, 2008

So You Wanna Go Back to Egypt

It's been several weeks since I sent the last update and we have several upcoming events that we would appreciate your prayers on. This one is a little long, so you may want to grab a diet coke/cup of coffee and sit down for awhile.

Next week will be a milestone week for Titus. He will turn 6 months old on Wednesday and next week will also mark the timeframe when he has spent more time at home than he has in the hospital. It is such a joy to have him home and integrate him into the Daily lifestyle. Titus is quite the trooper. He goes to church with us on Sundays and Wednesdays, goes on walks around the block with the boys (and Quita), goes out to eat with all of us, and has even made a few trips to the store. We always carry an extra oxygen tank around with us if he gets low, but having him on oxygen does not keep him tied down to the house. And, Titus got his first haircut last Saturday - we just had to trim up his curly hair a bit since he had developed quite a mohawk after it fell out on the sides (but stayed very long on the top). But check out the pics I've attached.

On Sunday, May 11, (Mother's Day), Titus will participate in Baby Dedication at our church. We will be so honored to stand there and dedicate our precious son, but also to pledge our continued support to raising him in a Christian family. Honestly, this baby dedication will be so different than the others we had participated in for Aidan, Noah, Tucker, and Cade since we know the life that Titus will lead is going to be drastically different from the other children standing up there with us. There are days we struggle when we see another 5 month old child who is able to hold up his head, turn to his father's voice and react in the way a child does that does not have the physical or developmental delays. But we know that Titus has been "fearfully and wonderfully made" and our love for him grows deeper every day.

On Monday, May 12, Titus will have a MRI / CT Scan done at Medical City. The MRI / CT Scan is being done for 2 doctors assessments. The ENT will be assessing Titus' ears so he can better determine if cochlear implants will be a "fit" for Titus. Secondly, the neurosurgeon will be checking the Dandy-Walker Variant (cyst at the base of brain). We had an appointment with the neurosurgeon several weeks ago, and she was encouraged at the growth and development of Titus head - it is growing upon the normal growth curve. Too little growth might indicate the brain is not growing, and too much growth might indicate a fluid buildup, but at this time there are no concerns and his head growth/circumference was right on track.

On Monday, May 19, Titus will be back in Houston at Dr. Feldman's for a checkup and day surgery on his eyes. It's still too early to determine the damage done to his eyes from the congential glaucoma. The optic nerve in his left eye was not fully developed, so there's not a lot of hope that there will be vision in his left eye. His right eye does not have as much damage, but does have some. We do feel there are times when Titus is concentrating and looking at something, but again, it's still too early to tell. Our prayer is that the pressure in his eyeballs are normal and that the 2 previous surgeries are providing the necessary drainage needed in the eye.

Becky and I would both admit that the last month has been very hard. Although Titus has consistently been home most of that time, the weariness of getting a full night's sleep is starting to wear us down. We have dropped our middle of night feeds, but Titus's oxygen monitor goes off numerous times during the night if he wakes up and starts kicking his foot (where the monitor is attached). Or, Titus will get his fingers around the canula and pull it out of his nose, and then his oxygen levels will sink and the monitors will go off. We have gotten his routine down - he tends to wake around 3-4am and stay awake for about 30-45 minutes. And, I truly believe the weariness leads us into emotional vulnerabilty. Satan loves to take a weak moment and turn it into an emotional breakdown.As I was having one of those emotional breakdowns in the car last week, I was led to this thought - "Do I want to go back to Egypt?" Now stay with me as I try to clearly explain it.

I thoroughly enjoy the Old Testament. But, I've never fully understood what was up with the Israelites after being freed from slavery in Egypt. Since I had the advantage of reading the entire story and knowing the outcome, I have tended to think "What a selfish, stupid group of people - You've seen some of the most incredible miracles from God and you stand there grumbling about the tiniest details". They had the very presence of God in their midst (pillar of fire by night, pillar of cloud by day), they had their immediate needs met, fresh food and water every day, and their clothes/sandals didn't even wear out. But even with all that, they wanted to go back to Egypt, to slavery, to what was familiar, routine, comfortable (as comfortable as slavery could be). And why? - because it was so predictable and they knew what to expect - they had 400 years of experience of knowing what type of life to expect. Wandering around in the desert for what should have been just a few weeks was definitely not in their comfort zone.

And, as I reflected on that, I realized how selfish that is - to want things always comfortable, to want routine, to want predictability, to not have to wander, to rely on daily provision and not my own doings. I've never considered myself an overtly selfish person (I'm sure there are people who would disagree - but they aren't getting this email), but I have come to realize my selfish thoughts of wishing things were normal, wanting to go back to my life 6 months ago, wanting a sense of normalcy is really just a selfish pursuit of wanting what I want when I want it and not relying on God plan. I've come to realize that the opposite of faith is not disbelief, but selfishness - believing in what I can see and want and possess instead of "being sure of what we hope for and certain of what we do not see (Hebrews 11:1)".

And, for the first time, I've come to understand the Israelites perspective. I can see how they were tired and weary and wanted to go back to what was familiar to them, even though it wasn't God's best - their selfish side told them it was at least routine and predictable and better than doing what they were doing. Even the memories of witnessing the incredible miracles of God tended to fade and pale in their weariness of wandering. And, just like in our own life, the highs/spiritual mountaintops of our past are just that - my past, not my daily bread. I can' t live a life based on what God did for me yesterday, I have to live my life based on what God is doing for me TODAY.

And, I now have a choice to make - do I grumble and complain because of events I cannot change, or do I claim the promises set before me that the "righteous are never forsaken (Psa 37:25)", that God "has a plan for me (Jer 29:11)", and that I have to "trust in the Lord with ALL my heart and lean not on my own understanding (Prov 3:5)". Please don't misread my intent - Titus is a blessing in our life, but the road is long, tough, and hard. And when I am tired, and the bills seem large, and the treatments seem uncertain and I don't see the progress in therapy that I would like to see, it's just plain hard to remember to choose to live for today. But I don't want to go back to Egypt - I want to lead my family to the promised land. And no where does it say that the road to the promised land is comfy, cushy, smooth, air-conditioned, and bug-free. (And, yes, for those of you raised in th 70's, I've been singing Keith Green's "So You Wanna Go Back to Egypt" - and I'm sure the rest of you are saying "who is Keith Green?")

Please pray for these items:

  • Titus oxygen levels - we are testing him at lower levels of oxygen, but as soon as he gets off oxygen, the sooner he gets off the monitors. As soon as he gets off monitors, the better we will all be sleeping. Please pray his lungs will continue to strengthen and develop.
    MRI/CT Scan on May 19 will provide the doctors the information they need to make a plan for Titus

  • Medicaid - we have filled out more forms, had more interviews and should be hearing soon that Titus will be approved. As soon as he is approved for Medicaid, his therapy sessions can resume.

  • Strength for Titus neck - he has incredible dexterity with his hands and fingers, but we are really working with him to hold his head up.

  • Rest for Paul and Becky

  • Ministry Opportunity - We will be facilitiating a Growing Kids God's Way class starting in June. We've always started a class in the summertime and have had so many express an interest that we realize our parenting ministry and lives go on. Please pray that God will bring the right families into this class.

Praise Update

  • Transforming Your World Update - as I mentioned in one of our emails, our church "left the building" a few Sundays ago and went out into the community to serve on Sunday morning. We had 7 couples and their kids go with us down to Medical City Dallas to provide food and encouragement to the families/staff in the PICU and NICU. We had such an incredible time sharing with families, praying with them, and the kids made crafts for the kids in the hospital (or invited the kids who were up there with their families to make crafts with them). Thank you so much for your prayers for that day. There are so many incredible testimonies throughout the entire church of things that happened on that day.