Today marks one year. One year since my son fell from a picnic bench, hit his head on the dirt below and suffered dire consequences.  What a year.  The first 6 months were the hospital stay to bone flap.  The second 6 months have been the absolute roller coaster of seizures.  We have had some incredibly  lows this year, but also some incredibly high highs.  As I reflect on the last year, I don't even know where to begin.

First off, Miracles are REAL. My son's injury has a 70-90% mortality rate.  Most don't survive.  He did. He has overcome the odds so many times.  The miracles this year have added up, toppled one on top of another.  Some are big and tangible, direct answer to earnest prayer.  Others have been in the many tender mercies and blessings our family has benefited from this year.  Some have been in the perfect timing of things, like this week. Coincidences that cannot be dismissed.

So many times when you hear people talk about trials, they say they are grateful for them and they wouldn't have had them any other way.  I'm not there yet. :)  We have had some incredible blessings this year that I wouldn't trade for the world, but it has been tough.  And we are not out of it yet.

This year I have come to know so much more that our Heavenly Father lives, loves us and cares so much about us. He and our Savior love us so much.  They will never give us more than we can handle. Even if it comes close, they buoy us up and enlarge our capacity to function; to love, to learn and to give.  I am so grateful for blessings and for the Spirit that guides us each step of the way.  I have grown so much.  My kids have grown so much. My husband and I have grown so much together. Angels surround us- both seen and unseen.  I have been purely amazed, humbled and so grateful by the outpouring of love, prayers, generosity and abundance of love and help our family has received over this past year.  Images and thoughts are flooding through my mind.  I am grateful for words of comfort, hugs, grandparents and family, generous gifts, dinners, playdates, visits at the hospital, therapists that love not only Parker, but his sweet brother that comes to appts, doctors that do all they can to decipher Parker's individual needs, incredible nurses and hospital staff, sweet kids that are so patient with their parents and little brother, understanding teachers, the many little kids that have been praying for Parker... The list goes on and on and on. Ultimately I am so thankful for my Savior and for my incredible husband that have both walked this path with me this year.  I am so grateful we have had each other.

And I've learned without a doubt that God is so incredibly mindful of us and the details in our lives.

 

Saturday
I got home from UCLA with the good news and an hour later we packed up the car and headed off to our ward (church) campout.  We were in the car on our way when Dr. Hussain called. He told us that he went back through the EEG during the episodes, and even overnight and he found the hypsarrhythmia patterns, in addition to typical seizures.  He has Infantile Spasms.  It was so hard to hear the news that confirmed the infantile spasms (IS) after we had been cleared today, especially right before we were going to face many friends and ward members that had no idea what we had just found out.

He went through all the treatment options and the side effects of each.  Infantile spasms can be devastating, but they can also be cured.  He had us go down immediately on the Vimpat last night.  Already today his seizures have been better.  This morning he only had 4-5 "kicks" instead of 8-10.  This afternoon and evening he had several staring spells that were not followed by kicks at all. Tomorrow morning he will have his last dose of Vimpat.

Through out this whole year, I feel like we have been guided by God's hand.  We have known just enough to get us to the next step- nothing more. We know just enough to make the right decisions.  Looking back, I am so incredibly grateful we did not know the end from the beginning. I don't know if I could have handled knowing everything we were going to go through.  When Parker fell, I knew just enough to take him to the ER.  He had a seizure within a minute of falling and in my mind I knew Seizure=ER.  That seizure saved his life. We have learned SOOOOOO much this year, but it has been line upon line, precept upon precept.  Here a little, there a little.

Even as I look through the last 2 weeks- we've been prepared for this diagnosis and the drastic measures we may need to take.  I have been pouring through a book by Johns Hopkins about the Ketogenic Diet, a diet that is extremely high in fat and low in carb and protein.  The traditional diet is a 4:1 ratio fat:carb+protein.  It works to decrease or even sometimes stop seizures in over 50% that try it.  1 in 2.  I will take those odds.  It is particularly effective when medications fail.  Yep- that fits us, too. We have tried over 5 medications in 6 months, and at least 3 of them actually made the seizures worse.  The diet works because when the body does not have carbs, it burns fat and creates ketones.  Somehow, this causes the brain to stop seizing.  They don't know exactly WHY it works, but it has been proven over and over enough that insurance covers the formula as a viable treatment.  This website does a great job explaining things- way better than I can tonight.

Anyway, this book mentions over and over how effective this diet can be for infantile spasms- and other certain forms of epilepsy.  Week before last I was on an epilepsy facebook page and a mother mentioned that her son had infantile spasms.  I private messaged her and asked if she heard about the diet. She told me about the treatments they are using currently (ACTH) and their next choice (Vigabatrin) but these have serious side effects!.  Keto was their third choice.  I looked up the treatments and one had a video of a baby having infantile spasms.  I watched the video and it looked EXACTLY like Parker's seizures.  I just looked for that website now to link it and I can't find it anywhere, but yet it was there when I needed it.  Hmmmm. So many little tender mercies add up.  I was just reading this website and I did not realize how rare IS are.  Parker did not have the typical EEG pattern that 2/3 of IS have.  Dr. Hussain researches IS and may be the best possible person to diagnose or rule it out. Such a tender mercy that he is the one that read the EEG, he happened to come by our room just as we went back to check if we'd left anything, and Parker just happened to have a seizure while we were standing there talking and he went back to look at the EEG again.  Too many things fell exactly into place for this to be a coincidence.

I was talking to a sweet girl with autism in my ward today at the campout.  I don't remember exactly what we were talking about right that moment, but she said "God is looking out for us. He takes care of us. His hand is in everything."  Little does she know how this was exactly what I needed to hear today.

Friday Morning:
This morning he had a really bad seizure at 6:28 am.  It was one of the worst I have ever seen.  Normally the "kicking" part of the seizure (not counting the staring spell that precedes it) lasts about 2 minutes.  This one lasted 4.  The jerks were hard and they lasted longer.  Normally each jerk lasts only about a second, but these were each about 5 seconds and his right hand would tremble during them.  Then at the end he had probably about 10-15 "after shocks" or small jerks that were about 2 seconds apart.  These aftershocks are pretty new and only follow the severe ones.  Poor baby.

The resident came by around 9am and gathered my log and they said they would look at it before they rounded in about 1 1/2 hours.

The neuro team came by and said everything looked great!  They were not infantile spasms and we should just go up on the meds and continue to prepare for the ketogenic diet in 2 weeks.  They agreed with everything my neuro in San Diego said, Great! It was so validating to have a second opinion that agrees so well with the first.

Friday afternoon:
We are being discharged. All is well!!! Everything they were concerned about is just fine. No hypsarrythmia, no status, no spasms, just several seizures. They are completely on board with everything our neurologist says and is planning. We start the ketogenic diet in 2-3 weeks. I feel really good about it and am so hopeful. Please pray that the diet will be effective. It is amazing just as we have come down just 1ml on one of his meds he is coming alive! He is happy, engaged, smiling, laughing. I so want this diet to work and for him to be able to come down on his seizure meds. I want my baby back!

Friday evening:
Just as I was discharging and leaving, the lady that opens the door to the unit asked me if I was sure I had everything and I went back to my room to check. Dr. Hussain just happened to come by my room  right then and I would have missed him! He is the one that was concerned and called me up to UCLA. We talked and Parker had a seizure while we were standing there. He watched the whole thing, was really concerned and went back to study the EEG.

He just called and they are infantile spasms. These can be devastating and hard to treat, especially when not caught early. The meds he is on currently makes them worse. We are titrating down immediately. Please pray they will improve this weekend as we go off this drug. The treatments are strong, hard and urgent. Please please pray that we will be guided which to try first and which course of action we should go. I feel like we've been led this far. The good thing is, if this can be treated, the neurological development he has lost during these spasms can be caught up. Please pray we are not too late and these treatments will work.

Thursday.  This morning I woke up to this sweet boy cooing up at me.

We came up to UCLA Tuesday for a routine EEG for a study we signed up for when we were here a year ago. They called this morning and were concerned about what they saw on the recent EEG and how different it was from the one 6 months ago right before he started having seizures.  Dr. Hussain called me this morning during therapy, we talked for almost half an hour and he asked if we could come in today... As in immediately.. So we are back at UCLA. They are wondering if everything is being done for him clinically that we can. I really appreciate the second opinion from first rate doctors. So here we are. :)

Originally Dr. Hussain (who read the study EEG) wanted him to come up immediately and be admitted through the emergency room.  I was worried about driving all the way up there and then not being admitted and having the ER cost.  Thankfully it was not an issue.  He emailed me and said to go through the admissions office instead so they knew we were coming and had a room ready for us. Soooooo much better.  We were admitted quickly and in our room within probably 20 minutes of arriving.  The nurses checked us in and then we waited for the EEG techs.

It was very surreal being back at UCLA this weekend of all weekends.  Sunday marks 1 year exactly since Parker fell.  It was so surreal, yet so positive being in the same hospital being surrounded by many of the same people.  I had gone to visit the PICU nurses on Tuesday and that was both hard, but good.  The flood of emotions.  I was surprised through the whole stay this time how positive my memories are- of the smells, hand sanitizer, elevators, restrooms, beeping noises, the nurses, hallways, the cafeteria, food, juice, even my cashier was the same as a year ago.

The EEG tech that came to put on the the leads name is Jimmy.  He is the same tech we had last year.  I don't remember if he put them on (I was a little preoccupied), but I definitely remember he was the one that took them off.  I remember so well the pungent smell of the glue.  It was even more surreal that while I was talking to the intake Dr (resident), the child life specialist (Alicia) from a year ago saw our name on the board and came to see if it was us.  I had visited her on Tuesday so "Parker S" was on her mind.  It was us.  She came to visit and helped with Parker. It was so weird and cool to be at the bedside with two familiar faces.

Anyway, enough nostalgia.  He had two seizures before they got the leads on (and he'd had them every half hour all morning) and then proceeded to have NONE all afternoon and evening.  Silly boy.  But, he did have several 10 second staring spells that I was concerned were seizures. They have him on continuous monitoring with a video camera.  There is a push button that you push whenever you think he might be having a seizure or something you are concerned about.  That marks the EEG and makes it much easier for the neurologists to focus on the times of concern.  So I pushed the button for several of those and they were able to rule those out as seizures.  Great!

Tuesday
I drove up to UCLA for a 6 month routine EEG for a study I signed up for last year when we were in the PICU.  The study is following traumatic brain injury (TBI) and seizures.

I left just before 6 am and only hit LA traffic the last 11 miles. (Those last 11 miles took 45 minutes). I didn't know how bad traffic was going to be so I actually arrived almost an hour early. They got me right in anyway so I didn't have to wait.  I explained what was going on with Parker and just how much has changed in the last 6 months.  Last time I went up was right before Parker's surgery to put the bone flap back in.  Back in February I went up to UCLA Friday, Monday he had the bone flap surgery, we came home Tuesday and Parker was doing GREAT, Thursday he had his first seizure and by the next week he was having 5 a day.  Now he is having anywhere from 9-15 clusters of seizures a day. Each cluster is anywhere from 8-20 "kicks" or seizures.  

I was explaining what they looked like to the neurologist and answering all kinds of questions about his development, medications and tons of other things while they were putting on the EEGs.  The neurologist was concerned and said they sound like they could be "Infantile Spasms," a devastating form of epilepsy because they are really hard to treat and control, and they can really affect neurological development.  My neurologist in San Diego had ruled those out, but UCLA was still concerned.  She said thankfully the neurologist that would be reading the EEG specializes in infantile spasms and should be able to rule them out or confirm them.  Hopefully he doesn't have them, but I have also been reading so much about the ketogenic diet and how effective the diet is for infantile spasms.  Whatever we are doing right now is not working.  Some mornings he seizes every half hour.  Each seizure cluster lasts almost 5 minutes and they are just getting worse, not better.  Either way, his current seizures are hard to treat and either way they are already affecting his development.  

Several weeks ago I went to the hospital for my neurologist appt and I went to visit our old inpatient therapists.  I was so excited to show off his new skills.  They were happy to see us, but I could see it in their eyes that he is not where they expected him to be.  That really affected me and I started to ask questions.  Both to my neurologist and therapist.  Can seizures affect development?  Yes.  They can.  My therapist said they don't often bring it up with parents, but since I asked, she was honest and said yes they can. We are lucky that he has not digressed, but when he is seizing so much, his development takes a back seat to the seizures. Some weeks he does GREAT and makes huge strides, but other times he barely progresses at all.  This is all during the window of time where his brain is still healing from the injury and the most development and improvement is possible.  He is drugged from the medications, his drive is declined....  The more I read and learn about the ketogenic diet, (we are slated to start it in just over 2 weeks) the more hopeful I am to be able to potentially control his seizures and be able to take him off these medications that sedate him, drug him, make him dizzy and just feel yucky. And they don't even work!  Three of the 5 medications we have tried actually make his seizures worse and they improve when we wean him off.  Something is not working and we need a change.  Anyway, back to this week.

I could not have asked for a better EEG scenario.  He had a seizure while they were hooking the electrodes up, which was not recorded, but all of the doctors were in the room and were able to watch how it developed.  Unfortunately the computer was booting up and started recording just as he finished. But, he had another seizure 20 minutes later and then promptly fell asleep and we were able to catch both sleep and a seizure.  Yay!  And we were able to visit the PICU, eat a yummy lunch from the cafeteria (Beef Curry) and not hit any traffic on the way home.  A huge success in my book.  They said I would probably be contacted next week.

Parker only smiles with his right side like this when he his having a seizure.  I am so sad the flash malfunctioned for this picture.  What a sweet little boy we have.

Also- we were approved by our insurance to start home care nursing.  With 3 of my kids in school now, I HAVE to be on my A game when all three get home from school.  I need to be there for them, but Parker needs constant attention and more than I can give him. I am so grateful that we are able to have a nurse come in each afternoon and all day a couple of days so that I can focus on my other kids and some of the things that have been neglected this year.

It seems that Wed nights are a great time for us to practice the Gait Trainer.  Dad is at scouts and all the kids gravitate outside to ride bikes and scooters. We live in a cul-de-sac on a big hill and I've discovered that if I set Parker at a slight angle going across the hill, it makes it really easy for him to go on the asphalt, but not where he will roll down the hill at all.  Then I help him go up the hill about 4 feet and we angle back the other direction.  So far his record has been 2 laps across the court there and back.  Tonight he did 4 laps, plus a 5th one out of the gait trainer.

Parker loves to sing and I love that he can match pitch.  It is harder for him to go higher, but the other day I got him to sing notes almost a full octave! During church, he will sing away with the hymns... and about 2 seconds after until he realizes everyone else stopped.  Sweet kid.