Golf is in the family

My brother Josh started it!  He took Brian and Lukas golfing early this year.  They were both hooked.  For his 6th birthday, Uncle Josh and Auntie Abby got Luke a set of golf clubs.  Auntie Melissa got him 4 golf lessons and Daddy found him some cool golfing shoes!  He's totally into it!  He's done 2 lessons so far and wants to go everyday.  The instructor even let Haylee hit balls and she left the driving range kicking and screaming, literally.  We told her she may not get to practice with Lukas the next time, she didn't like that news.

"I love having a baby brother!"

Saying good night to Hannah

"ni-night kisses" from Lukas

Nothing gets better cooperation for getting into bed than a chance to snuggle with their baby brother.  All 3 love their cuddles in their OWN bed with baby Jaron!  He isn't always up for it, but when he's in a good mood and awake at their bed time, we take him up with us and he gets to say good night!  Usually by the second or third bed, he's had enough :)  I just love the sweet, pure love that Lukas, Haylee and Hannah have for their baby brother!  They have no idea that other 6 month olds can sit on their mom's lap, hold their head up, laugh, maybe even shake a rattle.  They don't think it odd that their baby brother gets his baby milk through a tube.  And seizures are a just a regular part of who baby Jaron is.  They are SO PROUD of their baby brother and they pray for him faithfully.  They pray that his spasms and seizures will go away, and that his brain will be healed so that he can learn to read, play baseball, and take "big boy showers" and they are dedicated to teaching him how to do such things.  If only we could all have the mind and heart of a child!

Looking MUCH better this week!

We've actually gone to the zoo twice this week and church on Sunday and began bible study on Wednesday mornings!  The steroids are all gone and Jaron is returning to his non-drugged self!  Can't you just see the glow in his eyes?! We are so thankful to see his smile and hear his sweet voice again!  This morning in my small group at bible study, he was talking and I was totally distracted and excited!  His face is much rounder and we aren't sure if it will stay that way or if this is just a sign of the steroids.  He now weighs 15 pounds.   He is having about 3 or 4 spasm clusters a day still and we are most likely not going to get in to see the Ketogenic Diet specialist at OHSU.  His secretary called this morning and said they aren't accepting new keto patients.  I'm not sure if our neurologist will be able to pull strings or the next option is Seattle Children's Hospital.  Many hoops to jump through including our insurance coverage for out-of-state care.  We are just praying for wisdom, we're in desperate need.  Shouldn't say desperate, God knows exactly what is going to happen next and it is in His perfect timing.  Also, we are tentatively being referred to THE doctor of Miller-Dieker Syndrome/Lissencephaly.  Dr. William Dobyns wrote the medical journal with all the current info about these conditions.  He is doing research and has just relocated to Seattle Children's in the last month.  The second geneticist we saw last week is not sure why Jaron's liver enzymes are elevated and his CPK level suggests possible muscle damage.  He is wondering if Dr. Dobyns has seen any other MDS patients with these results and if so, what he did about it.  If he has not seen it before, then it may not be beneficial to make an appointment with him.  Apparently, Jaron has a very large deletion of his 17th chromosome and they are wondering if this could indicate other conditions.  We may never know the cause for the liver and muscle levels and we need wisdom to determine what steps to take, ie. liver biopsies, ultrasounds, kidney flushes...  For now, we will get his blood drawn again in a month to see if anything changes.  While he was on the round of steroids, the levels dropped drastically.  I am praying that they just stay normal and we don't have to worry about all these other tests.  

Mic-Key Button

Jaron has successfully had his new g-tube button placed.  Before there was an 8 inch tube always attached to his belly.  Now we just attach tubing when he eats.  The Mic-Key has to be replaced every few months.  I hope to be able to do it myself at home.  Basically there is a little balloon inside that you fill with water to keep it inside the stomach wall.  When the balloon pops or gets deflated, it can fall out.  The doctor explained that the hole in his belly is a lot like an ear piercing except that it will start to close up within hours if you do not have the tube in place.  Yesterday he had to be sedated and intubated because they had to pull out the old tube and do an endoscopy to check the inner lining of his esophagus and stomach. The GI doctor said that it looked more inflamed this time which indicates acid reflux damage.  She took a biopsy and will test to see if he needs more reflux medicine.  The steroid that he was on produces a lot of stomach acid and probably was the cause.  Yesterday was his final dose of the steroid.  I am really anxious for his smile to return.  He has started "talking" to us again!  It's more like a whine because he furrows his eyebrows and looks like he is trying to complain about something.  It's very cute!  We still haven't made any decisions about the next medication. We are hoping that the doctor who does the ketogenic diet will call and offer to see us before we have to make the decision.

Jaron is just not himself while on these high-powered steroids.  I cannot wait till this "famine from smiling" goes away.  My heart aches to see him smile and coo again.  He is looking chubbier but hasn't gained more than an ounce since he started this medicine which was supposed to cause excessive weight gain.  We are down to one dose a day and actually he seems to be having less spasms.  3 or 4 compared to 5 or 6.  Not sure what that means.  When he was on the highest dose, 4 times a day, he had the most severe and frequent spasms.  About a week ago he had a really scary seizure.  It was 10:30 p.m. and he "got stuck" in a spasm and his face turned blue.  I called 911.  When they got here he was breathing again and stable but it was super scary.  Did I ever mention, I HATE seizures?  At the appointment with the neurologist today, we discussed the next two possibilities for medications.  One is considered to be more effective in treating infantile spasms but it has a very serious and likely side-effect of permanent peripheral vision damage/loss.  It is a highly regulated medication and has only been FDA approved in America for one year.  The other option we are trying to get into is the ketogenic diet.  Apparently, there is only one doctor in the state of OR who manages this diet.  He is at OHSU and as you can imagine, very busy.   We aren't sure if he will accept Jaron as a patient yet.  I have done a little research and found out about another more alternative diet called the GAPS diet but I'm not sure how to do this with an infant and a g-tube and all.  This whole process is just so foreign to me and there are no absolute answers.  Seizures are extremely difficult to control.  What works for one person, may be totally ineffective for the next, even when they have the same diagnosis. It's just crazy.

Jaron in his "steroid stupor"

See what I mean?  He's just not himself :(  But he's still cute!

Doodle E Doo

I guess my dad was wondering why I haven't posted lately.  Just for the record, Dad, I've been twiddling my thumbs!  So this one's for you :)  We started 1st grade with Lukas this week.  We decided to do Sonlight again.  We loved it for Kindergarten and felt it was the choice God had led us to before and unless He showed us we needed to change, then we'd stick with it.  Because of the rollercoaster with Jaron, we considered all possible school options again.  Many will think I'm crazy but there were 2 major components that made sense to us in regards to Jaron.  Since we have decided for now that we do not want to go the public school route, I would have to drive him to and from a private school every day.  My head hurts just thinking about the logistics with doctor's appointments too.  Also, this protects Jaron from the multiple illnesses that school children are exposed to daily.  There are so many other reasons and we are happy with our decision.  A friend from church had the Sonlight Grade 1 curriculum and was willing to let us borrow it.  "Thank you, Tiffany!" So, school is free this year, it will require approximately 1 1/2 hours, 4 days a week, no transportation, no sack lunches, and I would want to commit that much quality time to Lukas and each of the kids anyways.  We all win!

Lukas decided ahead of time that he wanted to wear his fatigues and hold his bible for his First Day of School picture.  He has been putting on the Armor of God every night before bed (works wonders for a peaceful night sleep).  He always calls it "Galations 6" instead of "Ephesians 6" :)  He's my faithful little soldier for the Lord!

Not losing hope...

We are weaning off the Prednisone starting today.  It is a slow process.  The spasms have not gotten better, they've gotten a little more frequent and more intense.  We have monitored Jaron very closely.  He has had blood drawn, blood pressure checked and another EEG.  Tomorrow we will do it all again.  The first week of the steroid Jaron had no adverse side-effects.  He slept a bit more but was otherwise normal.  He had a few less clusters of spasms but his EEG looked slightly worse.  The EEG shows a pattern called hypsarrhythmia which indicates infantile spasms.  Apparently, Jaron was not on the maximum dose so the second week we gave him the medicine 4 times a day instead of 3.  This made Jaron much more agitated and over the last few days he has been having at least 6 clusters a day that last at least 15 minutes and they are more severe even than before.   So the neurologist decided this morning that we would begin the weaning schedule.  Really this is only 2 days early but there's no sense in continuing the full dose if it is not affecting the spasms.  Jaron did not gain a bunch of weight or swelling, his blood pressure stayed normal, he never got "voraciously hungry,"and he has not gotten sick.  We have many things to be thankful for.  I'm not sure what the next step is.  I am sad that this medicine is not working, nobody wanted it to work more than I did.  But over the last 2 weeks as I've held my child convulsing in my arms, I have been reminded of God who sent His own precious Son Jesus to earth.  The Father knew His Son would suffer but that suffering saved my life for eternity.  I only hope that somehow Jaron's life and suffering are bringing glory to God.  I still believe God will heal Jaron of these spasms, we just have to try other treatments.  This has been a journey filled with many tears, frustration, desperation, prayer, fear, songs, questions, pain, hope, joy...  I am so thankful that I can call the Creator of the universe, my dearest Friend.  He has stuck closer to me than ever.

P.S. I also thought it interesting that the verse about "faith the size of a mustard seed," Jesus said to His disciples when He healed a young boy with epilepsy (seizure disorder).  KEEP BELIEVING!