Best Christmas Gift Ever

Baby girl Denlinger was born this morning (12-22-21) just after midnight. She weighed in at 5 lb 5 oz. Second prayer of strong lungs seems to be answered. There is one more specific prayer request – that she won’t need heart surgery. The nurse they spoke to about it last night said everything is looking great. There will be a cardiogram today.

Thank you for rejoicing with us,

Grandpa and Grandma Denlinger, Aunt Kari, and Uncle Matthew

PS If plans hold, grandma gets to see her this afternoon.

First Prayer Answered

There was room at the inn for the young couple with child (translated: Jeremy and Sarah are now in Philadelphia where they found an opening at the Ronald McDonald House).

And while we wait, hoping and praying that all will be well, here is something that Ron has been thinking about…

I, Ron, had to laugh when I read this headline the other day: “The universe is expanding faster than it should be.”

“How dare the universe disobey?” said a leading astronomer. “It is frustrating that the cosmos is out of line with how things should work.”

Lest I mislead you to believe that the scientists thought such things, the fact is that National Geographic simply wrote a poor headline – poor, in my opinion, because it can be easily misinterpreted. No one really thinks the universe is bad. Instead, the content of the article makes clear that the scientists are humbly realizing that their predictive models are flawed – there are factors that are missing.

We, by contrast, do indeed act as though the universe (or at least the world) is misbehaving because things don’t go the way we think they should. How many times people say, “this isn’t the way it should be.” It isn’t normal for a child to precede his parents in death – that isn’t the way it is supposed to be. Retirement should be a time to be able to travel, not for a man or woman to be tied down caring for a spouse who has had a stroke or who is experiencing Alzheimer’s. (And that is just my beginning for what could be a long list of things that don’t unfold the way they “should.”)

If we lived in a perfect world, we would be right. Those who expect the world to “behave” are missing a huge factor that make things the way they are – sin. This is a broken, fallen world. But it is also a world in which God uses even broken things for our good – the good of making us more like his son. And in that there is hope. And there is joy that comes when we accept those things that God won’t change (at least, won’t change now). And there is great joy in knowing that God more than countered when he added another factor – sending his son as a human baby, who would offer his life, leading to the eventual creation of a new world where all is well and as it should be.

One more thought: Despite how broken this world is. It is amazing how often things go well. Which leads us back to thanking you for praying with us that our other requests will also be answered in the affirmative.

Roller Coaster

Baby girl loves to sit on that edge. After lots of testing, doctor debating, pros and cons, ups and downs, the decision was made, and Jeremy and Sarah are heading home from CHOP. Cardiologists are saying heart seems stable and they would like to give a little more time for her lungs to develop.

The plan: Headed back to CHOP on Monday to stay. Baby will be monitored every day and projected to be born on or before Christmas.

Pray that a room opens for them at the Ronald McDonald House, lungs will develop and that (miraculously) she won’t need open heart surgery.

A Baby Before Christmas

Sarah’s doctor says that our granddaughter is small but stable. Sarah and Jeremy are headed to the Children’s Hospital of Philadelphia (CHOP) for more tests this Thursday. Their doctor here says they should be prepared to stay, and in either case they will have a baby before Christmas – born at CHOP, with the possibility of needing heart surgery.

It is a little difficult to know exactly what Christmas will look like this year. That’s okay. What matters is that the baby remains number one priority. I suppose that isn’t a bad mantra for any Christmas – the baby is number one!

In other news, Matthew did a great job in his part of Christmas celebration – he was in the kid’s choir at Calvary yesterday morning (green shirt, far left). He continues to make progress in just about every area. CHOP did a great job of sharing the story of Matthew’s neurosurgery and the outcome. It is posted on their neurology website.

Finally, Joan and I celebrate that it was 40 years ago today that we went on our first date. It was a Sunday afternoon performance of Handel’s Messiah at the Academy of Music in Philadelphia. (And have you noticed that Philadelphia seems to be a big part of our lives?)

Redirection

Today I had the difficult conversation with my son as to why it may not be a good idea to put on his Christmas wish list things that may be too difficult for him to use. He sees commercials with kids flying over half pipes on skateboards and battery-operated motor bikes that can go up to 30 mph. Many toys that Matthew sees are not conducive to his right-sided weakness and right field of vision loss. As parents, we are wise enough to know that those gifts would only lead to great frustration and little fun. So, I have learned the great art of redirection, helping him put his hope in gifts that will bring him great delight and that are safe for him. But all the same, it brings sadness to my heart to know that although some gifts are great for others, they are not good for him.

At my kitchen sink hangs a sign that reminds me daily, “To hope in God is to not feel consumed by difficult life challenges. Never forget that one day God will close the curtain on sin, Satan, and suffering!”

HOPE. We all need it, otherwise we spiral into despair. So many sad stories in our families, neighborhoods, and world. Always important to remember that believers in Christ have hope. Many weeks ago, when I first learned of the syndrome my granddaughter is battling in the womb, I prayed for her by the name that her parents told me. Not knowing her middle name, I started speaking aloud her middle name as Hope. It is not that, but for the time being that is what I call her. And speaking of the little pumpkin, she may make an appearance before Christmas. If so, perhaps this a “redirection” from a loving God. Jeremy and Sarah are gearing up for this possibility. Not exactly what we are wanting, but doctors are seeing signs pointing to an earlier delivery. So, we hope and pray that whatever is best for the little one (despite our desires) will come to pass.

 This verse from Psalm 71 could be her prayer now if not years from now once she can read it.:-) “For you, Lord, are my hope, my trust from my youth. On you I have leaned from before my birth, You are He who took me from my mother’s womb. You are my strong refuge!”

She is a beautiful gift from God. This is not necessarily the birth journey her parents were dreaming of, but just the same the miracle of life is a gift that will bring great delight and be perfect for them.

Keep praying for my children and grandchild. Thank you!

The Best Thanksgiving Gift

Our little diva granddaughter had more than a photo shoot in Philadelphia today. Many doctors wanted to check in on her, so Jeremy and Sarah spent the day at CHOP. Her heart looks promising, blood flow is good so far. The swelling on her neck that captured the doctors’ attention eleven weeks ago (that put them in this high-risk pregnancy) is almost gone and probably will not require surgery. But without that warning flag they would not have known that this little one needs special attention. Just like God to make sure nothing is overlooked!

They will go to CHOP again in four weeks for another series of tests and cardio ultrasound to evaluate where she is at with the heart defect. Based on that, they will determine whether she will need open-heart surgery upon birth.

Jeremy and Sarah are also reserving a room at Philadelphia’s Ronald McDonald house a few days before Christmas. Doctors want them in Philly so they can assess the baby daily until they induce labor after Christmas – to bring forth their first-born child. What a Christmas this will be for that sweet Denlinger family.

CHOP will be allowing one guest (other than parents) to see the babe. I better not say who that guest is, but SHE is smiling ear to ear right now. Do we have much to be thankful for or what? Let’s give God the glory for his righteous right hand on “baby niece,” as we are accustomed to calling her around here.

Spinal Neuromodulation

Literally just last evening Joan and I were talking about Matthew’s hemispherotomy and our concern that he might not fully recover in his ability to walk with fluidity. And then this morning in therapy a new technology is applied to him – only the second kid at Schreiber to receive this.

I think I’m justified in believing the Denlinger family is increasingly being thrust into the cutting edge of things going on medically. Frankly it is mind blowing to me – and results in my needing to expand my vocabulary with words big enough to attempt to contain bigger ideas.

The research on spinal neuromodulation is published in September, the therapist at Schreiber Pediatric attends the seminar / receives training in October, and it is applied to Matthew in November. That’s what I call warp speed application of scientific discovery!

Part of Matthew’s therapy (begun at CHOP and continued at Schreiber) is something known as “functional electrical stimulation.” Prior to this, much of therapy was focused on muscle strengthening. However, stronger muscles only help get Matthew part of the way to where he needs to be. His brain must also know where his body is in space in order to send the appropriate signal to the right muscles so they are used effectively. Better sensory input from muscles to brain results in the brain sending better signals in return. What Matthew has been receiving (functional electrical stimulation) helps that to happen.

Matthew will continue to receive the above therapy, but the belief is that with the addition of spinal neuromodulation Matthew could improve ten times faster because this approach bypasses the brain and gives him the ability to walk from a more primal function of the spinal cord. “Ten times faster” – once again feels like warp speed.

Schreiber is also telling us they have another therapeutic device on order (a whole-body vibration unit – not as in “shaking him up a little” but generating specific frequencies like what muscles would produce – so much so that the brain doesn’t know the difference) which does a similar thing as the therapy he has been receiving – with the goal of giving better input to the brain. I know, it sounds like science fiction more than anything, right? By the way (huge disclaimer here), I’m regurgitating all this info based on today’s at-Schreiber Ted Talk – not sure if Matthew’s therapist would be impressed or depressed with my level of comprehension.

Today’s takeaways

It is the glory of God to conceal a matter; to search out a matter is the glory of kings. (Proverbs 25:2 NIV) God’s creation is astounding – probably far beyond what we’ll ever fully understand. Those who understand the complexity, yet orderly nature of his creation become very excited about the possibility of discovery – and they should!

What is the answer when scientific discover seems to outpace our morality? Simple: Go back to the Bible and update the application of our morality. Note that I’m not saying to change morality but use wisdom to understand how the new technology should be applied correctly, helping people and God receiving the glory. The alternative is to cower and fear and not take advantage of the good things God is allowing. Real Christianity applied never does that. Look at history and see how many scientists were propelled in their work by having a theistic worldview and see how much suffering has been relieved – an effect that continues even though a specific present-day scientist may not have the same base of thoughts about God.

I’m so thankful for the amazing organizations around us (including Schreiber Center for Pediatric Development and the Clinic for Special Children). What a difference they are making to the quality of life for my children. By the way, if you happen to be looking for organizations to bless during Lancaster’s Extraordinary Give, both are on the list. 😊

Epigenetics

Today we got a mini crash course in epigenetics (a word completely unfamiliar to me before today). We received our “Ted Talk” from members of the research staff at the Clinic for Special Children (Strasburg, PA). They came to our home to collect samples from our family – we agreed to be part of a nationwide study, of up to 350 participants. Kari is the reason we were chosen.

Epigenetics is not a new field of study, but it seems to be one of new focus now that the entire human genome can be “seen” and is better understood. Epi is a Greek preposition meaning “on” or “above,” and so it’s use here is that it is the next layer of what happens with genes in the body. Nearly every cell in the human body has the same DNA. So, how is it that some cells produce proteins that help form bones, while other cells produce muscle tissue? That’s what epigenetics is about – understanding how gene activity is controlled by a cell so that a gene switch is turned on or off so that a cell can do what it is designed to do.

Being part of this study reminds me of the introduction to Star Trek: “The final frontier. To boldly go where no one has gone before.” I imagine this could be the beginning of greater understanding of medicine so that in the future, one looking back might see some of our present treatments the way we look at bloodletting using leeches in the 18th century.

A few takeaways from this:

Any close look at biology quickly reminds us of the truth of Psalm 139… “We are fearfully and wonderfully made.” To those at the baby shower this past Sunday, Joan quoted how God knits us together in our mother’s womb – one of those beautiful and accurate descriptions but also great understatements found in God’s Word.

We have no idea how God could use someone like Kari. There is something unusual about how her body works. She is the oldest known person with her disease (most die in infancy or as toddlers). Perhaps there is some special going on in her body epigenetically that accounts for this. Perhaps understanding that could lead to improved health for untold numbers of others someday. God has his purposes.

It is unlikely that what is learned will help Kari, but who knows? What we do know is that, whether we understand her disease, she is precious. She is made in the image of God and has great value. While we wish to increase the quality of her life, the value of her life has already been determined (it is as great as any other human life).

We will understand it better by and by. I’m not talking of epigenetics (of which I don’t really know anything), but rather of God’s purposes and his plan. Thinking about how his thoughts and ways are so much higher than ours should cause us to trust him more than we did before and take him at his word. Or, like Job, we might be ready to repent in dust and ashes and yield to his will.