Day 10

Notes throughout the day…

Most significant update – NO Seizures! Not a single stare, funny feeling in his arm – not a thing since surgery.

Dr Clancy just here with his teaching team, and they were really impressed with today’s movement. Afterward he made almost the exact comment Kennedy did the other day- ‘You (referring to me) are doing something right here, this progress is amazing!”

Just waiting for intense rehab starting tomorrow.

He is eager to walk but he likes his set of wheels that look like Kari’s (same brand, same red color – how cool is that)!

And Mom found Spring in Philly that helps keep her spirits up.

Matthew making attempt at giggles while watching Mighty Mike. First time – it is very sweet!😅 (This show is a slapstick cartoon on Universal Kids. “Why do you like Mighty Mike,” I would ask. “Because it makes me laugh,” he always says. Post surgery he had watched some, but he had remained sober – until today.)

Matthew and I are planning on watching a meteor shower predawn (when we are most alert out our big window – “maybe just one star Lord!”😊

Meditation

So my (Joan’s) sleep hours continue to be a bit wonky around here. Even so, my awake, alone times do afford me lots of time to mediate – something I had little time to do at home.

I am so encouraged by your comments of rejoicing with our family as we traverse this medical path. It is only appropriate to rejoice with those who rejoice! And to give Our God glory!

I am also aware that not every story ends in healing and success. I know that because of the place where I’m stationed – so many heartbreaking stories around me. Also, back home my mother who is in hospice is in a fight to keep going.

Nothing is harder than watching little children suffer, and there is much of it around here, not to mention the suffering beyond these walls throughout the world. Whether through abuse, poverty, hunger, the need for asylum and abuse while seeking a better country, persecution, etc., God’s creation is groaning! And I pray intently for those who are in those situations. What more can we do?

For years our family has fought back against the effects of the curse. We do so knowing that every life bears the image of Christ and therefore valuable. Right now it seems our honoring them in this way is paying off.

We will never have a suffice answer to the question of why some children die and others break all records like Matthew is doing! I stay close to Christ because He has the plan and the happy ending story (read Rev 21 & 22) for overcoming the curse. And those who trust His plan also overcome! As powerful as this institution is and the amazing story of our getting an answer to Kari’s condition through incredible science – none of that will be needed in that glorious day when this earth passes away! And so I mediate today on that Day!

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Today’s news from CHOP (reported by Ron):

Matthew is doing more walking (still uses a walker and needs assistance). And though he looks like the Scarecrow in the Wizard of Oz (when he was short on stuffing), at least he is walking!

Still not transferred to rehab. Not because he isn’t ready, and not because insurance hasn’t approved – it’s just that the rehab is full. So, won’t happen today or tomorrow, but we’re told he is on the top of the list for Thursday.

If you haven’t heard of Mike the Music Man (a music therapist at CHOP), it’s because you haven’t heard Matthew talk about his five day hospitalization back in November! Matthew really appreciates this guy and apparently the feelings are mutual. I got to see Mike on duo at the end of the therapy session. Mike told me: Musicians enjoy seeing talent in fellow musicians and I will tell you that Matthew has more musical ability in one hand than most people have in two. And he has amazing rhythm and consistency!

Unbelievable

Day 8 update: Unbelievable God stories coming out of CHOP this Monday!

Dr Kennedy reports that Matthew is possibly the quickest recovery of this surgery that he has ever had! Just to make sure he was not missing anything, he ordered a CT scan of head. The results: No swelling in his ventricles nor does he need a shunt revision! Pre-op he was 98% convinced he would have both of these issues.😊

Staff are scrambling to get paperwork completed and insurance approval so that he can be moved into in-patient rehab. They never expected this next step would happen this soon! Maybe Matthew and I will make this move tomorrow!

On another note, the neurologist that is covering Matthew this week is the same one we had when Kari was first admitted here 34 yrs ago here. Today he was here with a team of nine to see Matthew. I mentioned to him that Kari was his patient and off we went into an incredible conversation about all that is happening with her. He was astounded and said he had never even heard of a RARS2 mutation (Kari’s diagnosis). He suddenly remembered that he was here to follow Matthew’s progress.

As Dr. Clancy put his focus on Matthew’s status, he was also astounded with that and said to his team, “Something amazing is going on in this household.” I believe if everyone wasn’t wearing a mask, I would have seen some mouths gaping. We all know that “something” is the strength of my Lord and His peoples’ prayers!’

Note from Ron: Joan told me this morning that Dr. Kennedy kept saying, “I can’t believe how well he is doing. All weekend I expected to be called to learn of some setback. It hardly seems possible that things are going this well.”

Just to help you understand what is so amazing about all of this: We fully expected Matthew to be in the ICU for another week! We were never told that his stay in the ICU could be shorter (never told it because it rarely happens), only that his time in rehab might not be as long as expected. Also, in every area he is doing better than expected (speech, mobility, use of his right side, etc.)

Joan also told me the story of Matthew is spreading in this hospital. This is the place that saved his life 8 years ago. Understand that when he left here then it was with the belief that he would never walk, talk or sit without support. It is extremely rewarding to them to see such amazing, unexpected fruit come out of their labor. The last time they saved his life. This time they have the opportunity to dramatically improve the quality of his life.

Transferred!

Yesterday (Saturday) Matthew progressed from the ICU to the neuro unit. His new address is 9 South, Room 19, Children’s Hospital of Philadelphia, 3401 Civic Center Blvd, Philadelphia, PA 19104.

Matthew continues to make progress. Overnight he became very chatty. He enjoyed watching the latest Calvary Kids episode on-line, talked with his dad over Duo, and even started becoming a bit more demanding. Welcome back Matthew!

Nine photos have been added to the photo gallery

Prayer Requests

  1. That Matthew’s head heals without the need of a shunt revision
  2. That we would continue to see advancements in rehab every day

Early Morning Prayers

Someone on “Team Matthew” must have been praying at 1 o’clock this morning! To that person I say, “Thank You!”

I slept from 11-1 when I heard: “Mommy, I can’t get out of bed!” All the alarms were going off (a sound to which I’m getting inoculated, being in here 24/7). I jumped out of bed to find my son dangling by just his arms, IV lines, and of course that precious EVD line coming out of his head! I pushed the call bell and with all my might shoved him back into his bed.

He had managed to find the one small opening at the end of the rails to make his escape. Caught just in time, and after three nurses assessing, they conclude that all is well! The physical therapist told me yesterday that his mind will run ahead of body performance. Case in point! As my main role is security guard, the rest of the night I was on high alert!

Prayer: I do much of that while here – for Matthew, for you, for people I meet. There is nothing more reassuring to my soul than talking to the God of the universe. I realize others are praying too!

I see and hear a lot (except for those rare times when I’m dead to the world). My roommate’s mother pulls out her rug four times a day and, between our curtains, prays facing Mecca. The conservative Jewish family zooms each evening – their prayers are said in Hebrew (and tonight the Sabbath elevator will stop on every floor).

If you know the God of the universe, pray that Matthew can get his drain out today, no shunt revision needed, and continued healing! Thanks!

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Editor’s note: Jeremy is praying Colossians 4:3-6 for his mom. It says:

At the same time, pray also for us, that God may open to us a door for the word, to declare the mystery of Christ, on account of which I am in prison— that I may make it clear, which is how I ought to speak.

Walk in wisdom toward outsiders, making the best use of the time. Let your speech always be gracious, seasoned with salt, so that you may know how you ought to answer each person. (ESV)

Jeremy adds, “Paul ends the book asking the readers to remember his chains. Mom, just wanted to let you know we are praying for you and remembering your chains (chained to Matthew, Haha).”

Black Tie Dinner

Matthew’s afternoon nap began later than usual this afternoon, so I decided to sneak in an outside walk until it was time to get him out in the chair again for dinner. I was sure he would not awaken before I got back.

As I came down the hallway, I heard lovely classical music resounding from our suite. The nurse was there, and I apparently looked a bit confused.  She explained that she had to wake him to do his neuro checks and that he had requested Beethoven calming music to have with his mom. 😌

After we hiked him out of bed, there we sat with our fish sticks and salad listening to Beethoven’s best. We had more than one physician come by to check out this interesting site. One stopped because he heard his favorite piece, the one he puts on when he gets home in the evening to relax. He had never heard it in the ICU. “That would be my husband’s boy!” I told him.

I haven’t seen the more typical Matthew yet, the one who loves to jump around and pretend to be a rock star, just the very mellow, compliant child (the music comes from his dad: the compliancy from his mother).😊

Trending Upward

I (Ron) am writing the update this time because things are getting busier for Joan and she is a little tied up. One of her constant jobs is to make sure Matthew is comfortable and isn’t grabbing at the drain coming from his head. When he is out in his chair he isn’t restrained, and Joan has to do that job.

One of the challenges is that Matthew has to recline at a 45 degree angle when in bed (because of the drain). It is hard for him to sleep that way. Just the same, Joan says, “We both had two, 2 hour stretches of undisturbed sleep. So I am feeling really refreshed this morning. Though he was ‘rammy’ at times, with lots of backrubs and Disney lullabies I got him back to sleep.” The drain will have to stay in at least another 24 hours.

She also says that everything is trending upward. He hasn’t had any fever. There is no sign yet that his shunt (from eight years ago) needs to be revised. His stamina is improving. His catnaps are shorter. His cooperation is “out of this world.” He is very positive! Dr. Kennedy (his surgeon) said this morning, “Matthew is my biggest encourager!”

As you can imagine, Matthew doing well has a big impact on how well all of us are doing. Here on the home front, Kari and Mom are doing so well! I really believe that Mom is energized by all the good reports. She is looking forward to seeing him with no seizures and to have a brighter future with this behind him.

Last night our daughter-in-love, Sarah, sent us this picture (taken at their wedding). She said, “Just thought you might like this picture.” Believe me that it was a great picture for me to go to sleep to. I know I’m biased, but don’t you think he is a most handsome guy?

Because some of you are asking, Matthew’s ICU room number at CHOP is 7 East Room 39 Bed 2, 3401 Civic Center Blvd, Philadelphia, PA 19104

Some of you are wondering about providing food vouchers. At this point I feel like Moses when he had to tell the Israelites to stop bringing offerings for the construction of the tabernacle (not because I don’t like offerings, but because we are at risk of having more than we can possibly use).

Thank you so much for checking in to see how Matthew is doing. CHOP is very strict with visits because of Covid and I know it is tough on Jeremy and Sarah not to be able to see him. But we are so encouraged by the number of on-line visits from each of you. Yesterday we had 141 visits! I can’t tell you how much that means to us!

I’ve gotta go, a wonderful group of women from Willow Street Mennonite Church are outside my house mulching the flower beds, cleaning windows, etc. WOW.

Just to let you know, if you want to receive updates by e-mail instead of checking in, if you haven’t done so already, you can subscribe.

Let me leave you with a Jackie Robinson quote. And I share this with you because it is encouraging to see how many people care about Matthew. It seems to us he is making a big impact and all of you are making an impact on us through your love.

“A life not important except in the impact it has on other lives.”

Up and Out of Bed

This is Matthew’s first time out of bed! Doesn’t he look great? He did fade fast, though. In five minutes of being up he fell asleep.

Joan’s comment: “This is where I have to believe the staff here, the the push must begin despite how mamma’s heart feels.”

Although a picture speaks a thousand words, and therefore this post is long enough, I have to say this: Curious George is a travelling buddy given to him by his teacher. And I can tell you that George is stuffed and overflowing with love from the teachers, therapists and administration of Smoketown Elementary. Earlier Joan wrote that Matthew only smiles on demand. Since she wrote that I was on a duo with him. I told him that Team Matthew is the best team in the whole world – he smiled! He’s getting the idea of how much he is loved by you all.

Medical Day 3

Matthew and I are still hanging out in the ICU. He continues to be on an external intracranial drain which comes out of the top of his head. It also measures the pressure within the cranium. This very much limits his positioning and movement in bed and is the reason he is in ICU.

I can still report that all is progressing, and we have had no setbacks in last 18 hrs. He has every- hour neuro checks which are impossible to sleep through, but the bigger deal is that he is passing each one and his paralysis on right side (which was totally expected) is improving each hour as well. Physical and Occupational therapy begin within the hour.

Emotionally: Matthew is a trooper and my superhero! He is extremely compliant and oh so sweet. Every nurse loves him. His voice is still a whisper and he still is wiped out by activities such as eating and neuro checks. He gets to face time his dad for about 3 min each day and today Ron gave him a tour of our kitchen and his toy shelf. Now Matthew wants to go home. I am not so much ready for that – seems like we still need a few things accomplished😊.

He will smile on command, but nothing makes him smile naturally yet. When he is awake his eyes follow me everywhere and he still wants me holding his hand. I wonder how long that will last. Once that independent nature returns, I am sure it won’t be cool to have mom holding his hand😥

Spiritually: God is sustaining us both in this spiritual desert. Our “window view” only allows us to be spectators of CHOP’s air-conditioning units, which are massive I may add, but not so inspirational! And we can see a very small sliver of sky – cloudy today. Feels a bit prison-like, but with God on His throne, you all hounding heaven with your prayers on our behalf, and Jesus’ presence in our room we are hanging in there and very hopeful that “lockdown status” won’t last forever! God is good!

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Jeremy sent this image to Joan, thinking that she might resonate with it. She did! She said, “I know enough about chess to realize the knight isn’t going anywhere – very appropriate.”

On the home front, just want to say that the ladies (Mom and Kari) are making life very easy on me. No “events” from mom and no seizures from Kari – just the way I love it. I am certain that many of you are upholding this side of the equation through your prayers and both Joan and I appreciate it.

End of Day Two

After a very rough start of the day, we are coming into an evening that is a bit more peaceful! He finally was able to eat something tonight and it exhausted him – he fell asleep while still chewing last bite.

I showed him a picture of himself and he thinks the surgeon did a really nice haircut on him😊. I will pass that on to Dr Kennedy in the morning. I will post a picture in another couple of days. The incisions are still yucky but no drainage this afternoon, a healthy sign. No seizures🙌

The biggest struggle is keeping his head elevated and his left hand from pulling out his drain. So, I keep on a vigilant watch – I think I am exactly where I need to be. He also likes me to hold his hand – likes me to stay close during our extended sleep over. Pray that I can catch a few wisps of sleep tonight.

Because there are no visitors allowed, the other mom in the room and I have become each other’s cheerleaders. I have a wonderful group that has ordered food vouchers for me so that I can have a tray delivered to my room. The first food tray I got tonight was immediately followed by a second one. The kitchen made a mistake and just told me to eat that too for free. So, since the other mom in the room had no food today- she got blessed by the “mistake” tray. Isn’t that cool of God to look out for us all?

Slow steady progress marks the end of day 2