First look at Kari’s new wheelchair – on Thanksgiving Eve
In the spirit of the first Thanksgiving
Grateful for an abundance of things this year!
(including having friends like you)
First look at Kari’s new wheelchair – on Thanksgiving Eve
In the spirit of the first Thanksgiving
Grateful for an abundance of things this year!
(including having friends like you)
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.
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.
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. 😊
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.
One “diva” definition: female that expects special attention! So, I asked Jeremy yesterday if the little Diva was having her photo shoot (the new title I have for all the ultrasounds my sweet granddaughter is having these days). She has reached the awesome week 28 gestation, which for a Turner girl is a miracle! The 3D image is cuter than ever! Just can’t wait to meet her, but we will have to wait a bit longer. The hard news is that there still seems to be a heart defect that would require Sarah to deliver at CHOP with immediate heart surgery. Because of that possibility, follow up sonagrams will now have to be in Philadelphia. So, keep those prayers coming. #1 that she does not miscarry or early labor, #2 that the heart problem will not worsen #3 Sarah and Jeremy will continue to rest in Jesus for this journey.
I sign my books with the II Cor.12:9 verse, “My grace is sufficient for you, for my power is made perfect in weakness”. I just learned last week that “weakness” should be interpreted “disability.” To me who lives daily in the disabled world, thought that was pretty cool. I too am disabled – a diva who desperately needs Christ power to rest on me through all the special attention I need from above. 🙂
Have a blessed week in Jesus! Joan
That was the word we got today from our son and wife following the 27th week ultrasound. We are not sure who Mabel is but we are assuming that is the top-notch secret name given to our grandbaby girl. 😊 So now we are letting that secret out! But on the serious side: She has gained weight. She has moved from the 12th percentile to the 25th. Getting more chubby like her grandma all the time! And the swelling has not increased. So, we have another week again to thank Jesus for his sustaining mercy on this child.
This week we hit the 6-month mark since Matthew’s intense brain surgery. Still, we have not had a single seizure and his academics and behavior have improved greatly. He is killing 3rd grade and the bus driver asked us today if she could pay us for his entertainment abilities on her bus run. So grateful to God for the changes in his life. Still working hard on physical therapy 3 mornings a week and we ask that you pray along with us regarding movement in his right foot. We see slight response but are wanting more. Children’s Hospital of Philadelphia called today wanting to know if they could run a story on him. They heard from many staff that Matthew has an amazing story. God’s amazing healing at work. Next week our interview will happen.
Then, last but not least, Kari is running headlines in the Clinic for Special Children Newsletter. You can read the “Patient Story: Kari Denlinger’s Story at https://clinicforspecialchildren.org/ (and scroll down).
Our kids bless us in many ways. Ron and I just try to keep up and keep them warm and well fed. Speaking of warm, the Denlinger family has been blessed with a pop-up camper. Matthew is over the top excited at the thought of camping adventures. And we are too – even at our old age! So maybe you just might see us next in a state park campsite trying to stay warm and well-fed!
In Jesus. Ron and Joan
So, ultrasound of the week report is in. This is the first time this doctor has given a positive report.
This little one has moved from the prediction of 98% chance of miscarriage to the category of 2% miracle survival, and she is only at week 25! Jeremy and Sarah were told earlier that she would need to reach 28 weeks before we could breathe! This little girl is a fighter. Please thank the Lord along with us for this day!
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So, our garbage collection day is Monday around here. I am sure you all have a similar day where you hoist the week’s trash to the curbside. Today is not Monday but I am certainly thinking of trash today. Before 8 this morning I had cleaned out enough “garbage” from my two kids that it felt like I had already put in an 8-hour shift. It wasn’t pretty or fun, and my attitude stank right along with it! Some confession before the Lord was in order. For the last 35 years, I have had more than my share of messy situations to clean up and I know that this may come as a shock to you (but it only hit me about four months ago) that a lot of my identity comes from being a “special needs mom.”
I realize most people have seen me that way, but it never really crossed my mind – probably because I have been too busy with “taking out the garbage” that I don’t sit long enough to ponder who I am. When I took those moments to contemplate that, I came up with this realization that to identify myself with anything other than being a daughter of the Most-High God is really rubbish. If you don’t believe me, check out Phil 3:8. It is rather convicting and if you really meditate on that verse, you may have some confession to do as well.
This week has been full of looking back on our past contributions. Ron spoke on Sunday at the 30th anniversary of the church we planted, and it was an awesome experience to be there. Hallelujah – they are thriving in Jesus! This week RHMA (the mission we were with for 25 years) is having a pastor’s conference here in Lancaster, and we are helping a little with it. We have been doing lots of reminiscing of our ministry with them – lots of joy in those years, along with some very deep pain. For the past 10 years our identity is that of “caregivers” – certainly hasn’t been a cake walk and if you have followed our story, I know you agree.
The covid crisis has caused a lot of us to “redefine our calling in life,” and we’ve taken a closer look at what we want to be known for. I got a new title here in the last few months. I’ve been upgraded to grandma! It is a treasure to me as you know. I am writing this before the weekly ultrasound of my little granddaughter. So many of you are praying and waiting (along with me) for the next “read” on her life. I will update as soon as I know.
But this morning my heart is convicting me that “above all else, above any identity, above anything I can be known for, it is all loss for the sake of Christ.” The prayer of my heart is 1 Cor 8:6: “There is one God, from whom are ALL things and for whom we exist, one Lord Jesus through whom are ALL things.” Everything else is rubbish! Today, take out the garbage of glorying in other identities and be filled with the fact that God loves you and if you love Him, you are known by Him. What can be more precious?
Let’s keep the prayers going. Our little granddaughter is still giving Jeremy and Sarah a run for their money (and providing some cute ultrasound pictures). The week 23 gestation ultrasound reveals stability in that the hygroma on her neck has not grown and there is no extra fluid on heart, lungs, or other vital organs – only involving her skin. That is the praise, and we are celebrating!
The continuing prayer need is that she is still in a “critical stage,” though with each day her chances of survival improve. An additional cause for prayer is that her cardiogram is showing potential issues with her heart, and we are praying for miracles as this grape-size heart (normal for week 23) develops and grows strong. Your prayers mean everything to us all as we daily petition God on her behalf. He knows her name! He has heard it a lot from the mouth of this grandma! This morning when I told Kari that her little niece was going to get her picture taken again today, she smiled and raised both arms to heaven.
Let’s follow Kari’s lead and keep our hands, hearts and prayers raised to heaven. To God be the Glory!
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Time to storm heaven again with prayers for our family. Not for Matthew, nor for Kari, but for our yet-to-be- born first grandbaby girl. Jeremy and Sarah are expecting in Jan 2022! We are so excited to be entering this new phase of life – Grandparenthood!
Last Monday Sarah had a 20-week routine ultrasound and were asked to see the doctor afterward—and the word was not good. The ultrasound revealed a possible very bad diagnosis -the baby girl may not live. Sarah was moved to a ‘high-risk’ category, blood tests were done and the following day a more high-tech ultrasound was to be complete. That one revealed that the situation was still grave but slightly improved from the day before. Weekly ultrasounds are now in order.
I (Joan) cried all week. How can this be. I hurt so badly for my children. I hurt so badly for my granddaughter- would I know her? I hurt so badly for me! God this isn’t fair. Haven’t we had enough of pain in this family? Haven’t we had enough of watching children suffer?
But God is on His throne, and all the earth is to be silent. I lamented, I prayed, I pleaded with God to allow this time to be different. And I took much time to be silent before Him. This little girl’s name- chosen by her godly, sweet parents long before they knew of her condition means: “God answers prayer!”
Today’s ultrasound and DNA testing do confirm a diagnosis (Turner Syndrome). If she can just get through the next 2 weeks her chance of survival improves greatly! She has good signs of health that we are putting hope in. So today we rejoice because she lives another week, she seems strong, those 3D images that this grandma receives- I think she is the cutest baby ever!! And I danced just a little today (as much as my hip could handle) because God is reminding me that this one is created for eternity. And that is worth celebrating. I may be back to tears tomorrow and that is ok, because we love this little fighter. Jeremy reminded me that it seems like Denlinger girls beat the odds. Kari sits with her new diagnosis- should not have lived past 10 years and now she has the distinction as the oldest in the world with RARS2.
So, will you storm heaven on her behalf? She wants to live – her Mama feels it. And we the eager grandparents just want to see this precious family together.