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.

4 thoughts on “Really good – not necessarily easy

  1. So THANKFUL that you detected what’s going on with Kari!!!! Continued prayers for her, your energy level, for Joan and Matthew!! (I LOVE the picture of Matthew with the surgeon!! He looks SOO GOOD!!) Praying for Joe and Pauline, also!! So many praises this evening!!! Love, Cindi ♥️

    Sent from my iPhone

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  2. Just prayed for you all, mentioning all your requests before our Father. I continue to pray for more shut eye for Joan as it is a long haul.

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