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.