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.
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