Bringing Back the Smile

So he's acclimated to the new seizure medicine and we are increasing the dose very slowly.  But so far, it seems to be helping.  A few days in, he started making sounds, kicking his feet and actually looking at us.  He even gets a bit of a smile.  I didn't get anything accomplished on Thursday because I just didn't want to leave his sight.  It was so fun for the kids and I to talk to him and play with him, and he responded! It was amazing.  We literally have not seen a single smile on his face since the seizures began in August.  It has been a LONG time.  He is having spasms but for much shorter periods of time.  He had an extended EEG done on Friday but I haven't heard the report yet.

I decided to return to the pulmonologist this month because Jaron has had a yucky cough for 2 months and it just doesn't get better.  The doctor is treating him for asthma with albuterol treatments as needed, pulmicort which is a steroid that is inhaled like albuterol, with a nebulizer.  And he also put him on a very low dose of the dreaded steroid that he was on before, to try to reduce the inflammation in his lungs.  We are on a 2 week course and then we'll see.  The morning and evening medicine regimen is getting pretty lengthy and involved.

We have been referred, by two unrelated sources, to a very experienced, private ketogenic dietician in Portland.  (She worked at the children's hospital in Portland for years and now is doing it on her own).  I don't know what details need to be worked out but I am praying that we can get our pediatrician and neurologist to team up with the dietician to implement the diet.  This would save us from having to go all the way to Seattle to see a neurologist and ketogenic team.  The way it stands now, we have an appointment on January 21st and will have to transfer all of his neurology care up there.  And our insurance is not in-network so we have no idea what the cost will be.

So, please pray for this new medicine to continue helping control Jaron's seizures and for Carrie, the dietician, and our doctors, to be willing to work with us to start the keto diet, and that all these asthma meds will make his cough clear up.

He woke up at 4 am.  I got up and rocked him and snuggled for an hour, he was really congested so I worked on getting him cleared up.  He has a little turtle that lights up stars on the ceiling so I left it on and went back to bed since I figured he'd probably stay awake for awhile.  He was wide awake at church and has been his normal self today.  I gave him about a quarter of the sprinkles of his med tonight because I'm really nervous about it.  We'll see how it goes.  Thank you for those who responded about my last post, I feel comforted by your prayers and I know God knows just what comes next in Jaron's life.  It's so weird though that he literally missed a whole day of his life.  Brian brought him down this morning and showed him the tree since he missed the tree hunt and decorating.  Bri thought we should make our own "While You Were Sleeping" movie!  It was so cute today when we took Lukas to his Sunday school class, he was so excited for Redemption Sunday where the Elementary classes celebrate once a month with a skit and they cash in their earned points for toys or candy.  He wanted to show Jaron his classroom all decorated for the skit so he pushed his stroller through the room and talked to his friend, Alicia, about his baby brother.  If you were at our church this morning and Lukas bumped the stroller into you, I apologize.  He insists on pushing his baby brother whenever we are out. :)

Since our last post...  Jaron's had yet another EEG, we had a costume party for Halloween, we spent a weekend at the beach cabin, Jaron tried bananas (he liked) and applesauce (he did not like), Lukas has been signed up for Upward Basketball (season begins in January), we've had 13 various appointments for Jaron, we've ordered him hearing aids,  he was on a nebulizer for his cough, the girl's got a new princess castle bunk bed (Brian found it on Craigslist), we had a great family reunion at the Friant Farm and got lots of snow, Jaron felt snow for the first time, and the kids loved sledding down the hill, we had 2 Thanksgiving dinners and we started Jaron on a new anti-seizure med called Topamax.  This week, Brian is making a wooden Advent wreath with a candle for each day leading up to Christmas and we decorated our Christmas tree this evening.

Now to expand a little...  The EEG showed that Jaron's brain activity is getting progressively worse (a pattern called hypsarrhythmia), which is pretty clear based on the way Jaron is showing less social interaction, not tracking with his eyes as well, not smiling and cooing.  It makes me sad.  He is so sweet though.  He is calm almost all the time, he isn't sensitive to touch and he enjoys being held unlike his earlier days.  I was pretty emotional as the neurologist said what I already knew.  "We are losing him to the seizures."  We are desperate to get him started on the ketogenic diet, even though we don't know for certain that it will stop the seizures, it seems like our greatest hope.  We are still praying for a miracle to get him in at OHSU but we have an appt. scheduled in Seattle for the end of January if needed.  On December 1st our neurologist decided we should try Topamax, but we gave him his first dose last night and its been 25 hours and he STILL hasn't woken up.  So, we are concerned and unsure of what to do.  The neurologist on call told me not to give him his dose tonight and to plan on giving him a half dose tomorrow.  We even went to the Christmas tree farm and I carried him in the front pack in the cold, nothing we do will make him wake up.  So as I write this I am praying, we need wisdom from the Lord and peace for our hearts.

Celebrating 8 Amazing, Crazy Years

Vacation in a nut shell (I tried to make it short and sweet)

Brian and I got to take an amazing vacation to the San Juan Island for our 8th wedding anniversary from Friday to Tuesday! 5 DAYS! Amazing!  The kids were very well cared for by our whole family!  Jaron went to the Friant farm.  I was nervous about leaving him with anyone but I knew my mom was the most comfortable with babies and they were very capable of taking care of him.  All the teenagers, especially Jordan, are familiar with his seizures and I left a very detailed schedule of his feedings and medicines.  They did great!  I could honestly go and relax because I knew they were doing well!  The big kids got to spend time with everyone else.  Auntie Katy spent the first day and night with them at home.  Then Papa and Grammy Albaugh had them for the weekend.  On Monday morning, Lukas and Hannah went to Uncle Jer and Auntie Christy's, and Haylee went to Great Papa and Gammy Creamer's until Wednesday morning.  The big kids went to Barnes and Noble to get a few new books, Red Robin, the farm for an evening movie, the Pumpkin Patch (they each carved a face in one pumpkin), church on Sunday, Chuck E. Cheese, a couple parks, and Haylee visited the Senior Center too!  Plenty of adventures for all!  Meanwhile, on the island, Brian and I stuck close to our map and traveled every major road of the 55 square miles.  We visited Roche Harbor, Friday Harbor, the American and English Camps, Pelindaba Lavender Farm, the Alpaca Farm, the San Juan Vineyard, Lime Kiln State Park and every named beach or bay on the map.  We went to the Saturday Market, the Whale Museum, almost every restaurant and coffee shop in Friday Harbor, the book store, the toy store, the Hot Sauce Shop...  On Day 3, my brother Josh and sis-in-law/college roommate Abby, joined us on the island.  We went in our hotel's hot tub, sauna, and swimming pool, cruised the island in our rented black Dodge Charger, went kayaking along Haro Strait (saw jelly fish, bald eagles, kelp beds, harbor seals, dahl porpoises,  and the sea-side of the lighthouse), and wandered a little at the state parks and along the gorgeous docks of the harbor.  All sandwiched in between an hour and a half, beautiful ferry ride from and back to Anacortes.  Amazing!

"He's really special to me"

Jaron was especially happy and active this morning, kicking his feet, waving his arms, smiling and making sounds!  The kids were so excited to play with him.  I told them to be quiet so we could do a video and so they sat down and this is what Lukas and Haylee wanted to say.  I didn't prompt them at all but it was so cute, I had to share!

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!

Thank you prayer warriors, KEEP PRAYING!

The beginning of the steroid treatment just happened to land on the day we'd been planning to go up to Washington for a family reunion/60th birthday and my cousin's baby dedication.  Cousin's from one side of the family I hadn't seen in over 12 years!  Brian decided to stay home with the baby so that he could have as smooth a transition as possible and not put him at risk of infection.  I didn't want to leave the baby when I had no idea how he would react to the new medicine but I trusted that Brian was fully capable and God was in control.  The 3 big kids and I went up north.  We got to be with my dad's family on Saturday evening and mom's on Sunday morning!  We spent the night with my aunt, uncle and sweet cousin's (who loved on the kids) and shared yummy pozole with my whole family after the baby dedication!  Times like these, make me yearn for my REAL HOME in heaven.  It's hard to live so far away from those we love.

Jaron has been VERY sleepy.  He had fewer spasms yesterday (day 2) than he had the day before (3 or 4 clusters compared to 6 or 7).  Brian said that he slept for a couple hours after every dose of medicine.  He slept great last night and was smiling and cooing this morning!  I need to call the pediatrician to schedule a blood pressure check tomorrow.  Thank you so much for the huge response to my email, I was in tears as I read each little "I'm praying" message.  God is so good!

Brian's new job

Our family was so blessed when Brian got a seasonal, part-time job at Costco in November 2009.  He was getting little to no work in construction for several months (like everyone else at the time).  He was offered a permanent position after the holidays and was honored to take it.  The pay was not enough for our family of 6 to live on but it was dependable income and God had multiple blessings in store for us.  First of all, after he'd only been there 4 months, Jaron was born.  If you've followed our blog you know that was the beginning of the most difficult journey our family has been on.  It was a miracle we were paying our mortgage and bills over the last 2 years, another difficult path we've been traveling.  When we heard Jaron's diagnosis, Costco was so generous to give him paid time off to cope with the terrible news.  Our world was turned upside down and I know for Brian as the dad he felt helpless and overwhelmed as everything was totally out of his control.  The staff at Costco were a Godsend!  People were constantly asking him how the baby was and how he was doing!  They shared their own stories, offered to pray for him, and daily assured him they were thinking of our family.  Even a few customers heard our story and came in specifically to talk to him and reassure him about life with a special needs child.  The day before we took Jaron to get his g-tube placed, a couple returned to Costco and the dad asked if Brian wanted to see their son's g-tube.  Brian was really uncomfortable about the whole g-tube idea prior to that day.  That night, when he got home from work, he told me all about it, what it looked like, what the parent's thought about it.  They were very encouraging and positive.  There were other ways that Costco worked with Brian to help our family.  The assistant manager told me one day when I came in to thank her for being so accommodating, that they wanted work to not be another place to cause stress, they knew family was most important.  We were amazed and so blessed!

About a month ago, Brian's grandpa mentioned that the maintenance guy who works for the retirement neighborhood they live in, was retiring.  Grandpa told the homeowner's association that he had a grandson who was licensed and bonded and able to do all the work that they would require.  Brian did some small jobs and gave them a few bids for bigger jobs and they soon were introducing him as "the new maintenance guy".  He has been working there full-time for 2 weeks and even having my brother Jordan help him out.  They have more work than they know what to do with!  There are 253 units in this quiet, well-kept neighborhood that is only 7 minutes from our home.  He is not employed by them but they will give him all the work that is the association's responsibility.  It will be a lot of siding, fencing, painting, and roof and gutter repair.  Also, the homeowner's will get to know him and ask him to fix things inside their home or do remodels, or replace doors and windows, etc.  He's already been offered several of those jobs.  He has the freedom to choose his own hours and take time off if Jaron is in the hospital and there will be work waiting for him.  No more nights and weekends, yippee for mommy and kids!  He has worked every weekend for the last 9 months.  We are just so thankful for how God has guided us and blessed us in mysterious ways!

Praying for a miracle

Jaron had an important appointment this morning with the neurologist.  He has been having infantile spasms 3-5 times a day for the last 20 days.  Basically it looks like a full body crunch and they come in clusters.  So every several seconds his whole body tenses and then relaxes, it lasts 10-30 minutes.  This is a type of seizure that is common with very severe brain abnormalities.  But the neurologist said today that it is actually very rare in general.  It is an indication that the child will never be able to have normal brain activity and development.  With lissencephaly (smooth brain), infantile spasms are inevitable.  But WITH GOD, NOTHING IS IMPOSSIBLE!  Over the last 3 weeks we have been increasing the medicine he was already taking for the first type of seizure he had.  That medicine was having no effect on the spasms but rather making Jaron extremely irritable or sleepy. Some nights he was getting very little sleep and some days he was sleeping for 7 hour stretches and crying a lot more than usual when he was awake.  We spent an hour and a half with the neurologist this morning discussing the next option, which is steroids.  He had blood drawn, blood pressure taken, and a urine sample.  Tomorrow we will start Prednisone to control the spasms.  There are multiple, severe possible side-effects.  Including, extreme irritability, sleeplessness or too sleepy, weight gain and swelling, increased acidity in stomach, extreme hunger, high blood pressure, increased risk of infection (most dangerous side-effect, could quickly lead to death).  The treatment lasts 25 days and is given at a high dose for 2 weeks and then weaned off over 10 days. There are 3 outcomes: 1.) he could do great with the treatment, with or without side-effects, and reduce the amount of spasms or cure them altogether 2.) He could have horrible side-effects making the treatment ineffective so that we have to stop and try some other medication, or 3.) The treatment could work but eventually he could relapse and start having them again.  Basically, being cured of infantile spasms would be nothing short of a miracle.  I am asking you to pray that he does not have any of the severe side-effects and that he would be healed of the spasms.  I believe God can heal Jaron of these spasms and I believe if all of us pray together, very specifically, that God will hear our prayers and bring glory to Himself.  A few promises from the Rock, that I've been thinking about today (sorry I didn't find the exact references).  The prayers of the saints rise to the foot of the throne- He hears us (Revelations).  With man, it is impossible.  With God, nothing is impossible (Luke 1:37).  I don't want to be like a wave tossing aimlessly, our faith must be firm.  Faith, the size of a mustard seed, gives one (through the power of Holy Spirit) the strength to move a mountain.  The same Spirit that raised Jesus from the dead, and healed the lame, blind, broken, bleeding, sinning, sick of the world, worked through the disciples (in the book of Acts) and is in each one of us.  Will you 
claim that power with me?  With complete, confident faith, please join me.  No room for hesitation or doubt.  We bind any foothold the enemy may have in our minds and claim the blood of Christ.  The plan: I will give him the first dose tomorrow morning August 28th at 8 a.m. again at 2 p.m. and then 8 p.m. for the next 14 days.  On September 11th it will be 8 a.m. and 8 p.m.  From September 17-21st it will be 8 a.m. only and then he is done.  Let's see what God has in store for sweet baby Jaron!

Infantile Spasms

I HATE them!  So he had another EEG.  He didn't want to perform the spells he's been having nor did he want to sleep (which somehow gives them a better reading).  This was the one time we were praying he would have the spasms so that we could confirm this is what was going on and try to help him.  After 40 minutes, the EEG tech (who shared her own miraculous story of childhood seizures, brain surgery and seizure freedom) stopped the test and turned the lights on...  And then he started, of course!  So she turned it back on and recorded the spasms for about 5 minutes.  The next day, the neurologist called and decided to maximize the dose of the medication he had already started.  Every 5 days we will increase the dose of Keppra by .2 mL until we reach 1.5 mL, the maximum for his size.  The most likely side effect is irritability.  Now when I was a mom to healthy babies only, this would not have alarmed me.  But with Jaron, irritability is almost unbearable.  The last 2 nights have been very difficult.  He is agitated, fussing and arching off and on throughout most of the night.  Because he gets into such a painful arched position, I can't just let him fuss in the cradle.  Every time he moves, I have to get up and reposition him.  First we moved his cradle right next to my side of the bed.  Last night he was surrounded by 3 pillows in my bed. One under his head, one under his legs and another on the side so he couldn't fall out of the bed.  This way I could be closer when I pulled him out of his "C" shape, and not have to get out of bed every time.  Times like these, I am very thankful for a king sized bed.  When I got up this morning, he was calmly sleeping like a little prince on our huge bed.  I had a horrible kink in my neck but I think I got a few hours of sleep, if you add all the minutes together.  He has the same issues through the day but it's easier to sit and hold him while he cries when there is daylight.  So the side effect is no fun, I'm hoping it will get better as his body adjusts to the increased medication.  Also, he is not having any less spasms so it almost seems like a waste but I know we can't give up too quickly.

The new threat in our house is, "If you don't finish your dinner, we're gonna have to get you a g-tube."  (Sometimes I think it would be a good idea for teensy Hannah :) It worked the first time, but unfortunately they caught on to the impossibility of that.  Now it's a daily joke!

Jaron is doing great with his new feeding regimen.  We haven't changed much, he's still getting 90 mL every 3 hours, slowly dripped in through a pump for an hour.  Then at night he is on a continuous slow feed.  He hasn't been weighed for a week but at his GI follow up last Friday, he was 12' 5"!  He's huge! Every time I try to up the volume he gets upset and throws it up.  He just wants to take it slow.  I'm just happy with progress, alertness, increased interaction and any growth!

A week ago today, he started having infantile spasms a few times every day.  If you're interested, you could find hundreds of videos on YouTube of infantile spasms.  It's not as scary as other types of seizures but it means your brain has severe damage and will never be normal.  I found myself pretty emotional about them because I just don't like it.  I don't like what it means. I don't like what it looks like.  I don't like how it makes him feel agitated and not himself all day.  I don't like that I'm powerless to help him.  Just when we started to really see him become interactive and smile, this started.  We are loving that he is smiling!  That was the one wish Brian and I both had.  It took him a lot longer than normal babies so we were afraid maybe he never would smile.  I just wanted to know that he could show his emotions and that we'd be able to see joy in his life.   I've never been so overjoyed (like I get that giddy, "butterflies in your stomach" feeling) to see my baby smile and even making sounds! WE ALL LOVE IT!!!

Jaron wanted to show off his G-tube!

Week 1 with G-Tube

Jaron got a G-tube on Monday July 19th.  On the way to the hospital he was having cluster seizures called infantile spasms.  We called his neurologist and she ordered an EEG to be done after the G-tube placement.  They only took 45 minutes to put the tube in and called us in to the recovery room because the nurse was not able to calm him down.  He just wanted his mommy and a rocking chair!  We were admitted to the Pediatric floor for an overnight stay.  Back to our home away from home, we saw the same docs and nurses from last week.  Then the horrible part began...  I was trying so hard to be calm and trust that everything was going to be ok, but honestly I felt sick the whole night before and all day.   When we got to our room he was obviously in pain and when he's hurting it just escalates until he cannot calm down.  They were giving him morphine every 2 hours and I could tell it wasn't helping.  He basically just looked doped up and was still crying hard.
(Background: The neurologist prescribed him Ativan for breakthrough seizures when he first began having them.  It is a medication for anti-agitation and we have used a drop twice before when he was crying and couldn't be consoled.  I believe it kept us from going back to the ER on both occasions because when he is sick and gets really upset (screaming), he doesn't get enough oxygen and starts turning blue.  Another reason we are so thankful that my sister is a NICU nurse and can advise us on these issues.  So the medicine, it only takes a drip, makes him fall peacefully asleep.  But we are VERY selective about using it! I'm kind of a  medicine hypochondriac, I avoid even Ibuprophen unless I'm desperate.)
So our parental opinion/gut feeling was that he just needed some Ativan, not more morphine.  As we are learning, parent's aren't considered to know best in the hospital, we had to fight for it.  Actually Jaron fought for it.  The EEG tech came and started to prep him for the EEG but he was so upset she rescheduled for the next morning at 8:30, she knew there was no way she was going to get an accurate reading.  I called the neurologist on-call to see if they could order the Ativan but they said they needed a call from one of the hospital docs to request it.   Meanwhile, our nurse was calling the GI doctor and Brian heard her telling the doc that we just wanted more meds.  This is about 6 hours post-op and Jaron was not getting better, he was  much worse.  Long story made shorter, he got so stressed he had his worst seizure yet.  It was very scary and I was in the hallway yelling for some one to do something because my baby wasn't breathing!  He was turning blue, full-body stiffening, eyes rolling back, grunting, arching, not breathing, foaming at the mouth...  It was awful.  FINALLY, they brought Ativan.  It took 30 more minutes for him to slowly loosen his muscles and calm down.   If they won't listen to desperate parent's, they better listen to a baby coding!  Fortunately, it was time for the nurses to change over and we got a much better listening/understanding nurse for the night.  And, more importantly, our baby boy was sleeping calmly and peacefully.  And he has been fine ever since.  (He had Tylenol with codeine twice and was on regular Tylenol the rest of the week). They let us use an extra bed since there was not another child in our room, so Brian and I both got a bed and a decent night sleep.  The next morning, the sweet EEG tech came back and he calmly allowed her to hook him all up and do her test without a peep.  By 2 in the afternoon, we were on our way home.  2 out of 3 of our hospital stays have been traumatic.  Please pray for God's covering in the visits to come!

We are so thankful to be home, once again!  He was very sensitive the first few days, he didn't even want me to hold him but he seems to be adjusting well.  He was smiling and talking to the kids this morning as they danced around him and made funny noises!  I can't even express what great JOY he brings to our house!  He requires a lot of my time and attention and is often crying for reasons we do not know, but he is so precious and when he smiles, EVERYONE is excited!

Surgery day with NG tube in his nose

All wired up for the EEG, what a trooper!

Day 4 at Emanuel

The result of the pH probe study is that the acid reflux medicine he is already taking is helping control the acidity.  The GI doctor is recommending we try Prilosec instead of Prevacid and remove Zantac from the medication lineup.  The next thing to try is Regalin, which helps the stomach empty quicker to hopefully alleviate the pain he is still having during and after his feeds.  The GI doctor also determined that he will need the least invasive gastrostomy tube, which can be done in a small procedure with a one night hospital recovery.  We are scheduled for that procedure on Monday at noon.  Hopefully we will be released to go home tomorrow so that we can all get some much needed rest this weekend before the tube goes in.  He will go home for now with a nasogastric tube which he has been using since Monday evening.  I will need to have the pump sent to my house and learn how to run it before we leave.  I believe it is the same pump we will use for the g-tube feedings as well.  It's going to be a whole new world.  We have been reassured by many different people that feeding will go much smoother and that a g-tube is no big deal.  I am looking forward to not having the stress of force feeding him by mouth especially when he really doesn't want it and he chokes on it or cries.  I just want him to eat safely and grow!  Thanks for your prayers!

quick hospital update

It's late and the baby is sleeping so this should be quick.  Turns out he was definitely aspirating, it was very obvious on the x-ray.  They made some phone calls and sent us upstairs to the Pediatric floor of Emanuel Hospital to be admitted.  He got a nasogastric tube which is a temporary source to feed him with a tube in his nose that leads down to his stomach.  They are doing different tests to determine the severity of his acid reflux.  There are several different options which I'm too tired to explain but I will let you know what they decide and when they plan to do it when I know.  For now we sit and wait and try to get him to gain weight.  The kids came to visit today.  They have a neat sibling hospital visit program.  The kids got bags of hospital stuff (gloves, face mask, hospital bracelet, bandaid, syringe), a cloth doll with a little gown on, a beanie baby, and then a hospital play set (like you can get at Toys R' Us).  It was great to show them Jaron's room and see that he's ok.  They made cards with their Auntie Katy so we taped them all over his hospital crib!  We walked around the Children's Garden at the center of the hospital and they even got to make little butterfly masks.  It was great to have them here!  I'm lucky to have a NICU nurse for a sister! Melissa spent the night with Jaron last night so that I could get a good night sleep at home and wake up to the kids this morning!  We are so blessed in the midst of all these challenges!

Because Jaron is not gaining weight and he has had this cough for 4 weeks (possibly due to aspiration), the doctor's are starting to talk about a g-tube (=A gastrostomy tube that leads directly into the stomach through the abdomen to feed and give medications).  He will have a swallow study on Monday to determine if he is aspirating his formula.  Basically, they will put a substance in his formula that shows contrast on an x-ray machine.  While he is drinking his bottle, a speech pathologist and x-ray tech will watch where inside his body the formula travels.  If it goes down the proper pipe then great, but if some of it gets down his breathing tube and into his lungs then it is called aspiration.  If he is aspirating at all, they will admit him into the hospital immediately and prepare to put in a g-tube within the week.  Hopefully this is not the problem and we can continue to feed him by mouth.  But if he doesn't start taking more at each feeding and gaining weight, we will see a GI doctor and consider the g-tube anyways.  This is very scary for Brian and I to even consider but we want to do what is best for Jaron.  

Also, tomorrow Jaron is going to be sedated to get an MRI.  This will give the neurologist a better idea of how severe of lissencephaly (smooth brain) he has.  We'll let you know how these next few appointments go...

We had a great time at the family beach cabin near Pacific City!  We were so excited to take Jaron to check out the sand for the first time!  I think he liked it :)  It was a very restful, 3 day, family getaway with grandparent's, great grandparent's, auntie and cousin.  We had a campfire with s'mores and even went to climb and jump down the giant sand dune.  Jaron stayed with Papa at the cabin.  It was so funny to watch my little 4 and 3 year old girls climb that huge "mountain"!  Hannah, especially, got some wide-eyed looks from people at the top.  She's a mere 27 pounds so she looks too tiny for such a feat!  On our way out of town, Jaron's pediatrician called to tell us we'd been given the wrong acid reflux medicine (which explained his aversion to eating and increased crying/arching) so we had the new one called in to Lincoln City.  A minor hiccup in our otherwise great vacation!

Some updates and reflection

Jaron "talking" to his sister and brother

Kids are asleep, the sun is shining, and I'm finally having a bowl of Frosted Mini Wheats for lunch at 2 p.m.  I've been reflecting on the last few weeks...  Jaron is now 3 months old!  He has his second cold which has lasted nearly 3 weeks but so far he's been able to fight it well.  We have a new piece of equipment in our house now, a suction.  It works wonders to clean out his nose. I'm not sure how I raised 3 other babies without one!  He is on a new med for acid reflux which is working much better.  And we FINALLY found a formula that doesn't upset him!!!  It's called Elecare and it requires a prescription because it is for babies with very specific dietary needs.  I have taken him to 5 doctor appointments in 3 days and been referred to 2 new specialists.  He only weighs 9 lbs. 9 oz.  which is not enough for a 3 month old but I'm working on it.  I think he will always be a little guy but if he keeps up this really low weight they will start talking about a g-tube.  Brian and I are both nervous about that.  On a happier note, Jaron is making sounds!  His first word was "ow." It's actually quite pitiful and adorable at the same time.  We'll take it, since its the first vocalizing he has done.  And when he cries he either says "waa" or "ma" which melts my heart every time.  He is even starting to try to socialize with us for brief moments in the day.  Usually around 7 p.m. he kind of looks at whoever is talking to him and he opens his mouth like he wants to talk, smiles a little and every once in awhile makes a sound.  After about 5 minutes he starts to fuss and then falls asleep. They are precious times!  It has been a crazy 3 months.  I have felt deep love and deep despair, great joy and great fear, but mostly an abiding peace beyond explanation...  The first few weeks were so scary and overwhelming.  To be honest I wasn't sure if I should guard my heart for fear of losing him at any moment, so I clung to him as if each breath could be his last.  But over the last several days I have read other family's stories of their Miller-Dieker children who are 4 or 7 years old.  I am now trying to prepare my heart, mind, soul and body for a long bumpy road.  One I never imagined I would be on.  I am excited and terrified in the same breath.  Every day I am reminded what a special gift Jaron is to our family.  He has touched the lives of his mom, dad, brother, sisters, grandparents, aunts, uncles, cousins and it has branched out to more people than I know or even realize.  On several occasions I've been told that someone I don't even know has been praying for my baby boy and our family.  And that touches me deeper than I can say...  Kids are awake, sun is still shining, time to go be mommy!

While they were out...

If you read the previous post you know that Lukas, Haylee and Hannah were away all last week.  This gave us a rare opportunity to finish their play structure in the backyard and surprise them this morning!  Our awesome neighbors down the street, offered us their play structure 2 summers ago.  I told them we wanted it but we hadn't had a chance to come and disassemble it to bring home or the money to build it.  We decided it was a good use of our tax $ (all the extra supplies) and finally got it a few months ago, made a plan to completely remodel it to fit in our backyard, and began construction.  We got a beam from Jer and Christy, some scrap pieces of wood from the office, and we even had some decking supplies saved from a project Brian did 6 years ago!  Katy, Staci, Ben and Jenna helped Brian begin the project in February.

In order to get the play structure safe to play on in 1-3 days (Brian only had 3 days off work), we needed MORE HELP!!!  We called in the troops...  Great Grandpa Creamer, Papa Lee and Uncle Jer came to get 'er done!  Great Grandma brought lots of yummy food, including some trout they had just caught a week before to feed all the hard workers.  Today we surprised the kids with a club house, two swings and a tire swing!  Complete with 5 shape windows (triangle, square, rectangle and 2 circles)!  We still need a hand rail on the stairs and deck to keep the second story safe, but they literally spent 5 hours outside just today.  Lukas barely stopped swinging the whole time and Haylee's partial to the tire swing.  Hannah can't decide which is her favorite and she was constantly reminding her brother and sister not to break anything ie. the tire swing.  We have some finish work to do and we plan to make a little sandbox area below the play house someday...

Something for everyone!

Cool windows!

VBS

The 3 big kids had the opportunity to participate in the Rainier Church of God, Vacation Bible School!  They are so blessed to have teen aunties and uncles, Jordan, Bethany, Jenna, Staci, and Ben, whom they LOVE!!!  Lukas, Haylee and Hannah spent the WHOLE week at the Friant Farm!  They rode the horses, played with the dollhouse, the Wii, the girls got their nails painted and hair crimped (can't believe that's back again!) and went to VBS.  They had a blast going on a SonQuest Safari to... "Get It" God's Word - Psalm 119:11, "Get Found" God's love for us - John 3:16, "Get God's Love" Love God and your neighbor - Matthew 22:37-39, "Get Praying" Philippians 4:6, "Get Going" Work for the Lord - Colossians 3:23.  Hannah inspired a nursery-wide week of potty-training!  I guess since she went potty, the other kids wanted to also.  The teachers were more than happy to reward the little munchkins with gummy worms (nice snakes) and marshmallows.  Hope it worked!  Papa got the CD of all the songs they learned and all 3 are so cute dancing, singing and acting out the music.  

Jaron is dedicated to the Lord

Although our sweet boy's life is already in the Lord's hands, we wanted to have a special dedication and prayer as a church body.  On June 13th, our families gathered at the 9 a.m. service at Solid Rock.  It was a sweet moment!  All 3 kids came up on stage with us, Brian handed Jaron to pastor Phil and warned him that Jaron arches.  After handing him back to me to rearrange him so that his back was to Phil's chest, he was able to share briefly that Jaron was born with a rare disease with problems in his brain.  He shared Psalm 139 "God saw his unformed substance when he was in his mother's womb and had already ordained the days that were created for him." Phil thanked Him for this precious precious baby boy prayed that God's will would be done in his life, and for grace and wisdom for Brian and I, and then said "We love him" and gave him a kiss!
After church we gathered at our house with the Friant family and the Albaugh's and Creamer's for a yummy BBQ!  We are so very thankful for the love and support and especially the faith of our family.  God is good!

Things Jaron Loves

Baths (he falls asleep in the warm water)

Light-up disco ball from his Tio Abuelo Larry and his blue pillow (for neck support)

Silver disco ball from his Great Aunt Sandy and a spinning motor from Daddy

Being held with his back to you

His turtle made by Auntie Katy

A lot has happened since our hospital stay.  While in the hospital, I requested a Rx of Zantac for acid reflux hoping this would help with the screaming that seems to follow every feeding.   A week later it was still getting worse, he was now crying and arching his back up to 2 hours after eating.  On May 27th at 8:30 p.m. Jaron had his first seizure.  Brian was at work and since the neurologist had told me that a seizure lasting less than 5 minutes was not an emergency, I just sat and watched him.  But at 9:30 it happened again.  I called Christy and she came over to make sure everything was ok.  We looked up some info about seizures and we talked until Brian came home.  I had been thinking about trying soy formula to see if it would resolve Jaron's belly pain.  Brian brought home some formula to try that night.  By the second feeding he was like a totally different baby!  I was so excited!  He actually let Haylee and Hannah hold him for about 20 minutes each!  Usually he is arching and crying whenever he is being held.  I called the neurologist the next morning and explained the spells he'd had the night before.  She confirmed that they were seizures and prescribed a medication over the phone.  I knew better than to call the pediatrician this time since they would have insisted I go to the ER for a possible seizure.

This week we saw the Developmental Pediatrician, Dietician, Physical Therapist (3-in-1 appointment) and the Geneticist.  We discussed Jaron's hearing and follow-up with an ear specialist since his ear canals are so tiny and he needs hearing aids.  I talked to the Dev. Pediatrician about our traumatic ER experience and asked for ideas to avoid another episode like it.  According to the geneticist and all the info about MDS, we will be dealing with pneumonia quite a bit.  She recommended we see a pulmonary specialist at Legacy who can assess Jaron's specific needs for airway support etc.  Her idea was to have him make a list of all the requirements so that we can take it along to our next ER visit.  Hopefully a letter from a Dr. would be better received than our "parental opinion."

I asked if we needed to be extra careful about Jaron's exposure to illness. The geneticist said that Jaron has a normal healthy immune system but he is physically less able to fight illness when he gets it.  Hence, an episode with a virus and possible pneumonia turned into 3 days in Intensive Care.  We have 3 active children who love their baby brother and we don't want to create a bubble and quarantine Jaron from his family and all the love.  So we just have to try to be careful to avoid obvious exposure, wash hands, and keep from kissing or touching Jaron's face.  The girl's are great at only kissing him on top of his head!

Backyard Photo Shoot with Auntie Lissa

Happy Birthday!

Hannah is 3 and auntie Jenna is 15 on May 18th
Auntie Katy turns 24 on the 24th
and Jaron will be 2 months old on the 25th
Doesn't everyone celebrate birthdays the day their baby is discharged from the hospital? Ok, we are a little crazy!

Home SWEET Home

This is just before he got off the oxygen and ready to come home.  I didn't have my camera until the last day.  I will post more hospital pics when I get my sister's camera.  See my long, long post below...

After a traumatic ER visit, 3 scary days in the Pediatric Intensive Care Unit, and a day recovering on the Pediatric Floor, we are VERY glad to be home!  It all started with an ear infection... Thursday evening we got an antibiotic and he just wasn't getting better.  Friday afternoon and thru the night, Jaron was eating less and crying more.  By Saturday afternoon, he had only had 5 ounces to drink in 30 hours and no wet diaper in 12 hours.  The pediatrician on-call said that a baby should not go 6 hours without a wet diaper and he should go in to the ER to check for dehydration.   Brian left work early so that he could come with us.  I'm so glad we were there together because it was a horrible experience.  We were advised to go to Emanuel because they have a Children's ER and intensive care.  Also, Jaron's neurologist is there so he is in their computers already.  We learned so much about the specific needs of our baby and how to advocate for him even when we are unsure and being advised by a very experienced doctor to do something we are uncomfortable about.  Basically, when you present a very ill baby who is less than 60 days old, you are bound to get the WHOLE gamut of testing no matter what.  They tested his blood, urine, chest x-ray, blood gases, and a lumbar puncture for meningitis.  We now KNOW to never consent for a lumbar puncture on Jaron.  We had to learn the hard way.  It is like an epidural because they have to draw fluid out of their spine.  Any woman who has had an epidural knows, it is an uncomfortable process because you have to lean forward, curling your back and hugging a pillow over your very large baby belly (not fun).  With Jaron, they had to roll him in a ball and try to hold him still while poking a needle in his back.  Brian and I did not want to be in the room for this procedure so we went downstairs and got a bite to eat.  When we came back, he was in a higher trauma room with CPAP oxygen mask on and in obvious distress.  The only report we got was that he turned bright purple and they immediately stopped the procedure to get him breathing.  From then on, poor Jaron was looking and acting horrible.  The day he was born they discovered he has low tone and is unable to support his airway.  He arches his back and neck often, possibly because of acid reflux but also to keep his airway open.  So, of course, when they rolled him in a ball he was unable to breathe.  He was spiraling downhill and the ER doc was seconds from intubating Jaron with a ventilator.  We both watched him helplessly but knew that he was in utter panic and needed warmth, calm, security... and he really didn't like the hi-flow oxygen blaring into his nose.  I asked if they could remove the oxygen so that we could calm him down and they refused.  Brian was not comfortable with the way they were handling Jaron and basically refused their attempt to intubate him because he felt it was their fault the baby had gotten so upset and distressed.  Remember, we brought him in just 2 hours earlier, very calmly, only because he was not eating and peeing, he was in no distress at home.  It felt too extreme to put him on a ventilator right then. The ER doctor then sent us up to the Pediatric ICU and said they could sit down with us and discuss the ventilator.  Thank you LORD!  It was a little crazy when we got him to the ICU initially, but in minutes they had Jaron wrapped in warm blankets and in Brian's arms in a rocking chair (while I gave the nurses his health history for admitting) and the new doctor sat down and talked calmly with us.  Jaron fell asleep peacefully, praise God!  He was never put on a ventilator but he was kept on oxygen from Saturday night until Tuesday at 10 a.m.  They tested for lots of things and just automatically put him on IV antibiotics (which, ironically, treats meningitis so why the lumbar puncture???)  By 2:30 a.m. Jaron had an IV in his arm, his head, and one in his leg that has a tube from his ankle fed thru a vein up to his belly (this procedure required sedation which they kept him on thru the first night).  Then Brian went home and I stayed in a parent's room with 6 beds for PICU parent's.  Jaron was on the hi-flow oxygen until Sunday morning and then was weaned to the lo-flow thru the day and transferred to the normal floor Monday to get off the oxygen completely before being discharged Tuesday.  They are not sure what virus he had but something in his lungs because he required the oxygen.  Probably a viral pneumonia.  He is much better now and so happy to be home!  Thank you for praying for us.  So many more details I could share but I'm just thankful he is ok and our family is back together!

Ear Infection Numero Uno

I love that my pediatrician is open late into the evening, very helpful!  Jaron has been really fussy on top of the cough, runny nose, congestion stuff.  I took him in last night and he has an ear infection.  Luckily, he likes amoxicillin and he isn't doing too bad with the Tylenol (acetaminophen actually with the recall and all).  When I first tried giving him Tylenol in the hospital before and after his circumcision, he choked and gagged and it was a bit scary.  He still chokes on it but I am getting used to helping him clear it up.  His big sister didn't want him to feel left out so I think she got an ear infection too.  We'll know for sure in about an hour and a half.  I think its the left ear for both of them, isn't that fun.  Hopefully, tonight we will all sleep a little better!

I wanted to share my picture of sweet Jaron on Mother's Day!  I got a picture of the other 3 on my phone but I haven't figured out how to get them on the computer yet.

Jaron's eyes seem to be fine so far.  The ophthalmologist wants to see him again in 6 months.  She said its hard to tell for sure at his age but the optic nerve looks good and she thinks he is showing signs of vision.  She thought he may have trouble focusing so we can try to stimulate his vision with flashy, bright-colored or light-up toys.  This would be especially necessary since he is not hearing well.  We don't really have any light up toys,  I will have to start collecting them...  Maybe Early Intervention will have some ideas.  I saw on a site about lissencephaly they suggested those colorful disco balls that project bright lights on the wall.  Wonder where I can find one of those.  Anyone have any suggestions, let me know.

Also, if you are reading this on or close to today's date, PLEASE PRAY for Jaron not to get too sick.  He has a stuffy nose now and I really don't want it to hinder his ability to eat.  He is up to a whopping 8 lbs 9 oz and 21 inches long!  He has come a long way from his birth weight of 6 lbs 5 oz, almost 7 weeks ago.  And it took a lot of bobbling up and down, so this is great progress!

1000 Gifts

So I got a link to a blog and was reading a bit and decided I wanted to start a Journal of 1000 Gifts.  Basically its listing things I am thankful for in a journal.  I found an old journal from one of our church's Women's All Night in Prayer from 2005 and, besides the first few pages, it was empty, so I am going to fill it with my gratitude to the Lord!  I am not going to blog all the gifts but I will share my first 5 with you!  Maybe every once in awhile I will share more.

I am thankful for...

#1 My strong and joyful, Jaron  

(Though I'm not sure of his personality yet, I know he is going to have to be strong to endure all the challenges in his life.  And I'm SURE he will bring LOTS of joy to our lives!)

#2 My confident and nurturing, Hannah

#3 My sweet and graceful, Haylee

#4 My sensitive and kind, Lukas

#5 My generous and loving, Brian