Sunshine

Ain’t no sunshine when she’s gone
It’s not warm when she’s away
Ain’t no sunshine when she’s gone
And she’s always gone too long
Anytime she’s goes away

Wonder this time where she’s gone
Wonder if she’s gone to stay
Ain’t no sunshine when she’s gone
And this house just ain’t no home
Anytime she goes away

And I know, I know, I know, I know… (Bill Withers sings “I know” a total of 26 times before moving to the next stanza)…

So, I find myself singing that song. Not all of it applies. Truth is: It was warm and sunny the other day when I was outside singing it, but metaphorically a lot of it is true. Thankfully, I do know “where she’s gone,” and I don’t “wonder if she’s gone to stay.”

Four more weeks of rehab. That’s how long they’ll be gone. That was the projection made this past Tuesday. So, (drum roll) the tentative discharge date is May 24. There is some sunshine from the light at the end of the tunnel!

In the meantime, trying to make this house a home. Getting some projects done (not just fiddling). And what Joan is doing is super important. I know where she is and why she is there!

I’m including two pictures, to convey a couple of things (besides the fact that you are telling us that you like the pictures). Matthew is working hard and he is enjoying the love showered on him. In OT he made brownies today. On breaks he enjoys gifts he has received (the binoculars are from one of his “buddies” (Travis) at Calvary Church.

Have you noticed how nicely his hair is growing back already?

Many of you have been touched by the roommate story. Here is more from Joan over the last few days (the sunshine Matthew and Joan are bringing)…

Wayne story

I think I scored a homerun today. Before his procedure (and again no parents) he said to me, “Are you Matthew’s mom?”

“YES, we got to adopt him!”

He said, “You adopted him???'”

He kept looking at me and after another minute he said, ‘You the best mom in the world!”

Now mind you, I haven’t always had the best thoughts about Wayne. He is a rough one and apparently the staff have all talked about how these two in this room are about as opposite as you can get! They come for Matthew’s bubbly personality, they run because of Wayne’s cursing and downright meanness.

But Matthew and I keep praying for him and telling him Bible verses and stories. Matthew even tried to play a video game with him – that was a disaster, but it gave me a chance to tell Wayne how good he is and how he could teach Matthew. And Matthew shares some prizes with him and calls him his friend. Wayne said one day, “Man, you don’t even know me and you call me friend??” Today Matthew called him his best friend 😌

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He just fights them on everything and is so depressed. I am not convinced he is going to do well. He needs to start radiation but I think they thot his rehab would be quick, but Wayne has no motivation. I wish I could help him more, but they are so strict about staying 6ft apart in the room. So I have to encourage with words only. He has been much nicer to Matthew and I and today we heard no swearing. Every time we meet up with him in the gym, we always cheer him on. Matthew always gets so excited for him even though Wayne has been rather nasty towards Matthew but I am hoping we are turning the corner. He didn’t make neg comments today towards Matthew 😊

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Footnote: Mom has been showing up recently. Joan has had a chance to connect with her and build some bridges to deeper conversation.

PS Compared to one a day, the posts have been getting sparse. Joan and I are both very busy, but Joan told me this evening: You’ve got to keep the posts going. I need the prayers! Thanks again for being part of Team Matthew.

Therapy and More Therapy

Weekend Report…

Joan says she feels like she is a volunteer for Handi*Camp (a ministry in which we served). Her “cabin” has two “campers,” Matthew and his roommate, whose mom has disappeared at the moment. Every other kid in rehab has a parent with them, except for Wayne.

Wayne plays video games when not in therapy. He cries a lot. He is super lonely and hates this place.

By contrast, Matthew watches “Scripture and Song” and comments: “That is a great verse.” He listens to Beethoven, watches Early Childhood Calvary Kids episodes (this week’s was especially great, Joan says), doing a “Spanish With Paul” lesson on YouTube. And through it all has the full attention of his mom to encourage him through a long, tough hospitalization. In Matthew’s mind, CHOP is still an awesome place!

Today…

At 8:15 Joan writes: “It has been nonstop since 5:45 here. I just now got a cup of coffee.” (I won’t list the challenges. Let’s just say Joan has her hands full!)

Wow. I almost feel guilty because, though I awakened different times, I slept in for the first time – until 6:30. Eight hours of sleep feels awesome! Then Joan showed me their schedule for the day…

In response I tell her, “On this end I just thought I’d get out my violin and fiddle most of the day and see how that goes.” (She doesn’t believe me.)

When they told us that Rehab would be intense, I had no idea it would be that intense! Matthew is a trooper. This morning I got to see Matthew in therapy at CHOP for the first time (by video). I share it with you.

I have to tell you that I watch that with mixed emotions. I am super happy that Matthew is making such good progress. At the same time I feel really bad for Matthew. I know how much work he put into walking the first time, and to see him have to learn it again makes me really sad.

Tomorrow is evaluation day. The team gets together and makes a projection for how many weeks of therapy he will need. Originally we were told two to six weeks. We know Matthew has a long way to go, so whether shorter or longer, we want him to have what he needs.

This is Matthew’s first full week. Pray for stamina (for both him and Joan).

The reward for today? Karaoke! (the only thing he has talked about all weekend)

Feeling old!

Hospitalizations and times of crisis aren’t new to us. We’ve had times when Joan was in one hospital with a child and I (Ron) was with another. It was true with Kari and Ryan. It was true when we were foster parents to medically needy children. This experience isn’t quite like that, but it seems close since our home is more akin to a medical facility than ever before. What is exciting to me is to realize that Joan and I are still working together as a team after all these years, perhaps better than ever at that. We each have our roles and we feel that each are at the right place. With regard to this admission, we’ve thought about switching after a period of time – Joan coming here and vice versa. But why do that? Too much of a learning curve midstream (at least for me). If it ain’t broke, let’s not fix it.

Kari seems better to me. She is more alert and not having seizures and becoming more comfortable. Of course I think, “What if these infections repeat themselves?. What then? Being parents to an adult with disabilities is complicated. Others in our position agree that once the child has graduated from pediatrics, there are less options of care. It becomes a hit or miss experience. Fewer doctors seem comfortable tackling Kari’s issues. As Joan is saying more frequently: “We’re kind of out there on our own. We’ve kept her going all these years – we tend to know what she needs and we have to be her advocate or just do what needs to be done.”

Joan’s Report: So after 3 1/2 hrs of morning therapy Matthew got a break in the sunshine on the balcony. In-patients are required to learn about gardening this Spring. This is Matthew’s plot.

He is exhausted from his first full day at the Seashore House, but never did he “push back” or refuse to do the work🙌! Amazing! He is looking forward to rewards. One of these evenings in Rehab they will have karaoke night and that is all Matthew can talk about. He can’t wait to use the microphone. If you know Matthew, you know he is back to normal😊 (at least in that sense). (Insert from Ron: Perhaps you have seen the movie “Radio,” starring Cuba Gooding Jr. I’ve often said that if there is ever a movie about Matthew, it will be called “Microphone!”)

Age 3

I (Joan) am learning the Rehab ropes, but I am grateful for a weekend coming up when we kick back a bit. Praying for rest for us both!

The comment of the day: Matthew was on his last leg with walker use at end of therapy and was having trouble making it back to his chair. “Oh my, I feel like an old lady!” The whole staff erupted in laughter.😁

Really good – not necessarily easy

Last evening at 11:00 Kari had a grand mal seizure. I wasn’t in the room, but I heard and instantly knew what it was. For the last couple days things didn’t seem right. Kari was just as awake, but not as oriented and maybe a little agitated.

For over three weeks Kari hadn’t been having seizures. Why now? Why had the ketogenic diet been working so well, but now seems not to be? What am I doing that is different? I come up with every possibility I can think of.

Don’t know if subconsciously she seemed hot to me… Not sure why I thought to go for the thermometer, but I did (nearly 18 hours after the seizure). And then it all became clear. Probably another UTI (something we had battled for months, starting in April of last year, and thought it was solved). Made some calls and this evening picked up a script at the Pharmacy. Hopefully it does the trick.

I’m not happy about the infection, but I’m happy to know the reason for breakthrough seizures. The diet is probably still working quite well. Chances are, if she hadn’t been on the diet, her seizures would have been tons worse. Kari is, overall (for Kari), in a good place. Doesn’t mean the path is easy.

Same goes for Joan and Matthew. I’ll talk about Matthew first.

Take a look at this shot of Matthew with Dr. Kennedy – yes, the amazing surgeon who ended the epilepsy in Matthew!

Kennedy had just assessed Matthew and determined that he is handling his own cerebral spinal fluid and no shunt revision is needed! Dr. Kennedy was also very happy about how is head is healing. Joan said that he was so happy that he was totally fine with Joan taking all kinds of pictures until she got one right 😊. Joan says, “He is our super surgeon and I think Matthew is his favorite patient!””

Did we mentioned that the big goal of the day was met? Matthew is now in rehab. And that’s good. But it won’t be easy. Matthew has a ton of work ahead of him and it will probably be intense.

As for Joan, she is so glad they are in rehab this quickly. That said, moving is stressful, even within the same hospital – except it isn’t exactly the same hospital, things are different here. Here’s the new address, by the way…

Room 307 Bed 1   Children’s Seashore House    3401 Civic Center Blvd, Philadelphia, PA 19104

Joan feels like hospital psychosis has hit her for the first time. She is so tired of learning new routines, rules, places she can and cannot go and trying to figure out how she gets her own needs met! Lots of info overload right now.

Within 15 minutes of Matthew arriving at Seashore House, he got a roommate – a 7-year-old who seems “a match.” I think Joan means that in a good way. Haha.  

Wayne got the beautiful window side😥. Joan gets the cot and view of hallway! Oh well.

It is the end of the day, Wayne’s mom has left, and Joan is trying to convince Wayne (who is scared to death) that everything is okay and that he should go to sleep.

Rehab at CHOP – the right place to be! And maybe it will be a shorter than anticipated rehab given Matthew’s progress. And all that is good, really good – just might not always be easy.

Please pray that Kari would fully and quickly recover from this (if I’m right) infection.

Pray that Matthew would have the motivation to do all the good, hard work that CHOP has prepared for him to do.

Pray that Joan would be strengthened and quickly oriented to lots of new things related to the rehab.

Pray for me, that I wouldn’t miss anything and would be successful in obtaining the care that my daughter needs.

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).😊