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.
Today is day 11 of Kari being served a mitochondrial cocktail. A cocktail “generally comprises three or more liquid ingredients, at least one of which is alcoholic.” In Kari’s customized mixture there is no alcohol but there are lots of ingredients – seventeen in all! Most of these are vitamins and the key item is an amino acid, arginine.
The reason we’re serving it up to Kari is to try to treat her condition at its root. The cocktail is prescribed by a medical doctor / mitochondrial specialist at the Children’s Hospital of Philadelphia.
Will the cocktail work? We don’t know. Kari is one of only 45 people known to have this genetic disease. And she is the oldest. Most die in infancy. Not sure that any others with her specific diagnosis have been given this treatment. She is therefore something of a guinea pig. Joan and I are to be the observers, noting any changes.
Have we seen any results so far? A few, but not significant enough to blog about. So far, no total elimination of seizures, nor signs of development.
Yesterday we were encouraged to learn that it typically takes six to eight weeks to see any changes. Another reason for encouragement: She is tolerating the concoction quite well. To put this in context, imagine suddenly going from taking a few pills a day to sixty or more. Hard to imagine not reacting to something – in the very least not having some GI irritation. Fortunately, there aren’t sixty pills to swallow. A compounding pharmacy puts pure forms of these ingredients into liquid which can go into her g-tube. Even so, she’s being hit with a lot of stuff! It is quite a cocktail.
After 34 years, is it reasonable to look for a miracle for Kari? In a way, it seems to us that her living long enough to come into an era with this level of scientific discovery – that is God’s intervention. That he would lead us to this type of testing after all these years and that she could be diagnosed, that is divine providence to be sure. There are many other pieces to this puzzle that had to come together so that we could have this full of a picture.
And so, we ask God to continue to do amazing things. And yes, we are praying this this cocktail would help Kari connect with the world around her.
In the meantime, Kari is still the same sweet, amazing, contended daughter who brings us joy. Whatever else could change with Kari, that surely will not!
The decision as to whether to have half of our son’s brain disabled was now in our lap. Many tests had been performed. 40 specialists at CHOP had reviewed the case and all had given the green light (not a single hesitation). Matthew was an ideal candidate for a Hemispherotomy. “If he were my son, I would be scared,” his neurologist told Joan, “But I would definitely have him go through it.”
And so, we were meeting with Dr. Kennedy, the surgeon who would perform the several-hour long operation. It was February. We had lots of questions for him, including this one: “Is Matthew getting too old for this surgery? Wouldn’t it have been better if we had it done a few years ago?”
“Right now, there is a 19-year-old young lady who is here in rehab. I performed this same surgery on her last month. She wanted rid of her seizures. And she is now seizure free!”
At that moment Joan and I were thinking the same thing. It is so hard to decide something like this for your child. What would he want? And how could he possibly know what he wants? We decided that this young lady, through her experience, would speak for Matthew. It helped us make a hard decision and to be at peace with it, thinking that this is what Matthew would choose if he had sufficient understanding.
Fast forward several months… I was having breakfast with a group of guys. It had been a little while since we had met together. I was sharing with them what Matthew had just gone through and the progress he was making and how he is now seizure free.
“What was the name of the surgery? And who did you say the doctor was?” asked my friend, Ross, sitting to my right. I answered.
“I think that’s the same surgery my granddaughter had. And that doctor’s name sounds familiar. I have to call my daughter and find out for sure.”
It was my turn to ask the questions. “How old is your granddaughter? When was her surgery?”
“19” and “The beginning of this year.”
Yes, this was the girl who had helped to pave the path – a young lady, Abby, also from Lancaster County. A few minutes later Ross was on the phone with his daughter, telling the story to her, and then passing the phone to me. “Please tell your daughter thank you. Her decision not only benefited her, but her story helped us feel comfortable with an exceedingly difficult decision.” In turn she thanked me for saying so. The recovery has not been easy, she told me, but Abby (at the time) had just achieved the ability to walk as much as two miles! So, with hearing the continuing story of her progress, she encouraged us again.
“Joan, you aren’t going to believe my story from breakfast this morning…”
One of these days we’re going to meet Abby. For one, her grandfather is determined to bring him to our church (Calvary) so his Adult Bible Fellowship can meet the one they’ve been praying for. Perhaps we’ll meet her at that time, if not before.
Abby is a paver in our lives. Though at the time she didn’t know it, she was helping to lay a path that would make our journey easier.
Matt is another paver. He is our Matthew’s cousin. He was at Lancaster Rehab recovering from Guillain- Barre Syndrome (GBS) and learning to walk again when Matthew and I visited him. It was in the Spring of 2020 and because of Covid our visit was by seeing one another through an exterior window and simultaneously talking with one another by phone. At the time, I had no idea that Matthew would face a somewhat similar ordeal.
Few, if any, have had a bigger heart for our Matthew than this cousin. This past weekend was Matt’s daughter’s birthday. Throughout the evening Matthew had watched the other children jumping on the trampoline. Joan proudly, but with sadness, watched Matthew encourage the other children. Jumping has been one of his favorite things in the world (whether a bounce house or trampoline). Just before we left the party, Matt said to our Matt. “I’ve got a surprise for you.” Realizing what he had in mind, Joan protested, “But he can’t climb in.” Undaunted, Matt replied, “We’ll get him in.” And that is the context of a clip from a video that we treasure!
The trouble with honoring individual pavers is that others on an exceedingly long list go unmentioned. There is friend, Russ, for example, who also had to learn to walk again because of GBS. (Russ’ story is entitled: A mile in my Shoes – Joan wrote the forward to his book). How supportive he and his family have been! He is one of those who, for months, never took off that purple wristband. And it isn’t just those who’ve experienced rehab – everyone on Team Matthew has made the path easier through prayer, encouragement, gifts, and acts of service (read back through our posts and you’ll see many examples).
Thanks to each of you for the paving stones you lay!
I was appalled when Joan’s mom (with dad’s assistance) removed every wisteria branch from our garden arbor. It had done so well that spring and summer, covering the arch with green leaves, creating shade over that area of the brick walkway. It had taken a few years to grow so well. And now it was gone. Joan was just as upset. But perhaps the master gardener knew what she was doing.
The next year that plant grew back with even greater force and the year after we saw something new – beautiful blooms. I’ve read that it takes eight to twelve years for wisteria plants to bloom. But it is possible to encourage the plant to do so sooner – through a severe pruning. In our case the plant displayed its flowering beauty in half the typical number of years.
A hemispherotomy surgery (see explanation below) is a severe pruning to be sure. The thought of putting Matthew through it was at first repulsive and then terrifying. But he made it through and is well into rehabilitation, but we have a long way to go. We are told that it takes three to six months for full recovery – meaning returning him to the abilities he had before the surgery. Matthew is just six weeks in.
Even so, there is already evidence that Matthew will bloom. He will have cognitive ability for which he did not have potential prior to his “pruning.” With seizures out of the way (we’ve seen none since the surgery), new things are possible. This will take time, which will require corresponding patience on our part.
Everyone loves miracles, especially those that show immediate results. It would be nice if the surgery outcome had looked like the man by the Beautiful Gate who, after a word from Peter, was immediately walking and leaping and praising God. Instead, each new step for Matthew is painfully slow.
I’ve learned a lot from the wisteria experience. Though none of my garden pruning has been that severe, in faith I’ve since taken the shears to many plants and have, over time, seen a lot of fruit as a result. And slowly I’m growing in my confidence that the Master Gardener knows what he is doing and brings much fruit through his pruning work in our lives (see the Gospel of John, chapter 15).
* A hemispherotomy is a type of brain surgery where the two hemispheres of the brain are disconnected. Children who may benefit from this procedure already have long standing weakness on one side of their body; this is due to severe damage to the opposite side of the brain.
Joan’s mom passed away yesterday morning. Joan and her dad were with her at the time. We had just finished singing “It is Well With My Soul” to her and then as dad read to her from the Bible she left us and entered heaven. We miss her already. We cared for her in our home for over seven years, time which passed so quickly.
Matthew and Joan came home one month (to the day) after his surgery.
As I was nearing the hospital Joan called me and said “Everyone is waiting. Park the car in (such and such a place – illegally, by the way) and run! They are about to start the “parade.”
I made it in time (totally forgot to wear a mask) for the celebration. He was not walking nearly as well as he had been because he had pulled a muscle that morning, but I was so proud of my boy just the same. What a celebration! The Seashore House Rehab does it right.
The reason for the early discharge is a sad one. As I write this, Joan’s mom is nearly home (her departure is imminent) and is no longer able to have visits. We’ve had some very precious times with her and she has been able to say her good-byes. I’m very thankful for Joan’s instincts regarding the timing of things and her insistence that it was time to leave CHOP.
The days are very full and very emotional. We have moved constantly from palliative care to comforting dad to entertaining family who wish to say good-bye to physical therapy for Matthew to Kari care (which includes trying to fine-tune the ketogenic diet as she has had some breakthrough seizures). It is easy enough to move from task to task (duty demands it). It is not so easy to switch to the appropriate emotion for each activity.
Matthew continues to make progress. Joan was told it would be three to six months from surgery until he is back to where he was prior to the surgery (in areas related to mobility). Cognitively he has progressed beyond where he was previously. And, we’ve seen no seizures.
Matthew needs breaks, especially with the atmosphere of grief from which we try to shield him as much as possible. He knows things are not normal and he has questions about heaven. Yesterday we had a great time at Dutch Wonderland. I was able to maneuver him from the wheelchair for several rides.
It is really happening. Matthew and I are leaving CHOP tomorrow, May 12!! It was exactly one month ago when we came here.
The staff here will be throwing him a party, which is awesome, but our earlier than expected departure is very much mixed with grief. Over the weekend my mother became weaker. After a lot of prayer, discussions, and seeking wisdom, I asked the rehab doctor if we could go home because Matthew needs to say “good-bye” to Grandma (who is also “homeward bound”) and Grandma definitely needs to see Matthew again. And I want to be there for my mom during her final days on this earth.
Ron says, “Although the hospice nurse says we need not be in a super big rush (though who knows) it would be more therapeutic for everyone to have Joan and Matthew back together with the family. And so we’re going to live the crazy life together rather than separately.”
A lot of strings needed to be pulled on my end, but the staff is fully confident that I will be able to keep his therapy going at home along with outpatient rehab I am getting set up in Lancaster. My sister says I am going from frying pan to fire. And she is right. I have no grandiose thinking that life is going to be easier, but we will be together. I say that a cord of three strands (Ron, me and God together) will be stronger.
Please pray that we can make this all happen and mostly pray for my mom who is very weak, that God will be a constant companion by her side!
It is day 23 here and if the doctor’s prediction is accurate we are over halfway through this hospital journey! That makes me smile, but to be honest, it also carries with it anxieties and challenges.
Matthew’s seizures are gone and everyday I am so amazed. I only realize now how many Matthew was having night and day prior to surgery. Yes, that is why the doctors wanted us to consider this major surgery – they knew how many seizures he was having and they also knew it would only grow worse as he aged.
But now I am in the daily grind of helping him overcome what the surgery has taken away. Yes it is a temporary right-sided weakness, and I hang onto that. But in the meantime it is drill after drill forcing those muscles and brain to remember how to engage. I have bruises all over my shins from crashes of his wheelchair and my pour toes have been crushed multiple times as he walks with his clunky brace. But walking he is doing. Upgraded from the strawman in Wizard of Oz to a penguin on a beach – those are Matthew’s terms. And improvement keeps happening, I have been down this road before with Matthew – the kid about whom we were told over and over that he would never walk or talk.
So why the anxieties you ask? Because I know how he could dance, swing on a swing, ride his scooter, run in the rain! And I want it all now and so does he. Today he kept wanting to jump, when I was supposed to be learning how to do gait-belt walking with him. He is not satisfied waddling like a penguin – he wants to fly. So begins the next few weeks of pushing proper training (so he doesn’t injure himself), and enduring watching him also overcome his sadness that his leg and arm don’t quite do what they use to do.
By faith, we push and pray that brain and muscles will all reengage. Trying to lay aside my crying out: “God, it just doesn’t seem fair that we are having to do this all over again!”
My theme verse going into this, “Be strong and resolute, do not fear for the Lord himself marches with you – He will not fail or forsake you” (Deut 31:6). And for all you Bible scholars out there, I know this message was originally meant for Israelites in battle, but I am adopting it right now in my own battle for faith and courage. A few times in the gym and our balcony singing times, I have felt the Spirit’s presence very near me. And an immediate comfort comes over me. I know that is all the prayers hounding heaven on our behalf. Thank you – and Matthew and I will endure!