My Treasures

     As I was putting Jaron's jammies on last night, I found a sticker on his t-shirt.  One of the kids had gotten him a sticker at Target while we were shopping.  It always amazes me, the things they do without anyone noticing.  I'm not sure who got it for him, but I love that they are always thinking about their little brother.  Stickers are like a special treasure to young kids.  Usually, I will ask someone to stay with the big kids when I go see a specialist with Jaron.  But more and more lately, I have been taking all four when I know it will be a quick follow-up appointment and I don't have to give a lot of details or get new instructions.  Now the kids ask as we prepare to leave,"Is it the doctor's with a toy and a sticker?"  They have been to all types of doctor's offices now.  When only one of the kid's comes along, then they are sure to get a sticker for each of the others.   They painstakingly labor over the decision of what sticker to get for each other.  Simple things to show their love and be sensitive to the desires of one another.  I totally understand when Mary, the mother of Jesus, is said to "treasure all these things in her heart," referring to the maturity and wisdom of her young Son.  I too, marvel at the sweet things my children say and do.
     We just finished reading, "The Treasure Tree" by the Smalley's and the Trent's.  It was given to us by Lukas' preschool teacher, Mrs. Cook.  She and I had talked about how similar Lukas and his Papa Albaugh are.  This book is about 4 best friends, a Lion, an Otter, a Golden Retriever and a Beaver who are on an adventure and use their different personalities to find a treasure.  It was fun to go through the checklist at the end to discover what each child is like.  We already knew, Lukas and Papa are Otters!  Lukas really wanted to be a Lion but I explained that it can still be his favorite animal and it's ok that the Otter character is a girl in the story.  He did agree that he could identify more with the Otter.  Hannah is definitely a Beaver, but Lukas insisted she had some of the Golden Retriever characteristics as well.  I agree.  I'm fully a Golden Retriever, period.  And I think Haylee and her Daddy are mostly Lions but both have a little Beaver in them too.  Lukas decided Jaron is a Lion and a Beaver, that made me chuckle. Here are the explanations for each personality:  (I added the notes in parenthesis)

Lion:     Brian and Haylee (Adventurous and Artistic)
1. Is daring and unafraid in new situations.
2. Likes to be a leader. Often tells others how to do things.
3. Ready to take on any kind of challenge.
4. Is firm and serious about what is expected.
5. Makes decisions quickly

Otter:     Lukas  (games, games, and more games!!!)
1. Talks a lot and tells wild stories.
2. Likes to do all kinds of fun things.
3. Enjoys being in groups. Likes to perform.
4. Full of energy and always eager to play.
5. Always happy and sees the good part of everything.

Golden Retriever:  Monica and Hannah a bit
1. Always loyal and faithful to friends.
2. Listens carefully to others.
3. Likes to help others. Feels sad when others are hurt.
4. Is a peacemaker. Doesn't like it when others argue.
5. Patient and willing to wait for something.

Beaver:   Hannah (my PUZZLE-Girl)
1. Is neat and tidy and notices little details.
2. Sticks with something until its done. Doesn't like to quit in the middle of games.
3. Likes things done the same way.
4. Asks lots of questions.
5. Tells things just the way they are.

This was really fun to identify, and we would love it if you posted a comment and told us what your family's personality types are!  The kids got really into it and I know they would be interested to hear who is like them!

Wait again

Finally, after 4 months of waiting, Jaron saw his new neurologist today.  This was our first appointment at Doernbecher Children's Hospital (OHSU).  I gave a brief history of Jaron's seizures and my questions to the Resident (as it is a teaching hospital), then the doctor came and gave his opinion.  This clinic is hard to get into so I was referred for a second opinion when, in reality, I just want to transfer care to him.  The doctor was good.  Not sure how else to explain.  Basically he said that if we are primarily dealing with infantile spasms which are classified by hypsarrhythmia on the EEG (A.K.A. chaotic brain waves), then he would recommend Sabril/Vigabatrin (which has possible permanent peripheral vision side effects).  If there is no indication of spasms but other types of seizure activity, then he wants to try Depakote/Valproic Acid or Clonazepam.  Time to return to my research...  Here I come "any-cephaly" facebook friends!  His recommendation was to get a 24 hour EEG and possibly a new MRI.  I scheduled the EEG for early July, so we wait again.  The MRI's scare me because of the sedation, so I will ask questions with my lissencephaly family on that one too.  I was a little concerned that the neurologist would be leery to work with us since we started the ketogenic diet without a neurologist on board.  And because our previous neuro refused to do the diet with our dietician, we felt we had no other choice.  This neurologist does have a team that manages the keto diet but so far, he didn't offer any support from his team.  At least if we have any emergencies, now we can go up to OHSU and they will know how to care for him while on the diet.  He did say, the keto diet was a good idea for Jaron's case and that if it didn't start helping with seizures within 3 months, that it probably would not ever help.  He was understanding and agreed that Jaron will need to take on any change of meds or treatments very slowly.  Until he gets the results of the 24 hour EEG, he does not want us to make any changes to the diet or his seizure meds.  I think this is all good for now but I REALLY want to see these seizures GO AWAY!  He is having 15-20 a day and they are different.  I would say we've seen at least 8-10 different types of seizures since he started last May.  The thing that I miss the most is his smile...  We have gotten glimpses of it so we know it's in there.  Oh, how I miss his sweet smile!  He hasn't smiled a real smile since he was about 6 months old, when the infantile spasms started.  And he was tracking us back and forth around the room...   To be honest, it has taken a toll on Brian and I.  We feel really overwhelmed and desperate to find help for our baby.  But we have to wait.  So wait we will.

Scooting along the Seaside Seawall with my Sister, loved it!

As if I didn't have enough going on in my life, my church family has convinced me to take on the Helvetia Half Marathon!  I can't believe I'm saying this...

I'm going to run in a half marathon!!!!

Whoa.

Ok, so years ago, a friend told me she never enjoyed running but she started anyways and she grew to love it.  I thought she was crazy.  Told myself I'd never try out that theory.

Here I am, 4 weeks into training, 50 miles under my belt...  WOW!  I'm still in shock! And guess what, I'm really enjoying it!

I could not do this without my incredibly supportive husband.  He has been amazing!  Brian has researched and prepared more recovery drinks, gels, gu's, whey protein shakes than you could shake a stick at.  And he's always there at the end of a run, with a water bottle full of bright red juice and congratulations!  He helps me map my route, stays with the kids no matter what time I decide to go run, bought me some good running shoes, and even shops for workout clothes.

I went to an orthopedist 2 weeks ago because my knee was really hurting and I didn't want pain to keep me from my goal.  He determined I had illiotibial band syndrome and referred me to a sport's physical therapist.  The PT did multiple strength and flexibility tests and decided that I should get a heel lift in my left shoe.  I have really bad scoliosis and so my left hip sits a bit higher than my right and could use the extra support.  The first time I went running with the little insole in my shoe, I didn't feel the knee pain or my lower back pain.  He also had me work on some balancing exercises and he's helping me strengthen my hips, hamstrings and lower back to support my knees better.

At my fourth PT appointment, the physical therapist had me run on a treadmill and he videotaped my legs so that he could slow it down and critique my technique.  First of all, I know that I would not be considered a fast runner.  I have a slow pace and I often take breaks to walk as needed.  When I ran with my brother a few weeks ago he said the Marine's would call my pace the "Recon Shuffle."  I had embraced this term and was still proud of my progress.  So Mr. PT showed me my run and said that he wouldn't really call it running.  And actually, it wouldn't even be considered a jog.  When you walk, you have your heel of one foot and toes of the other touching the ground as you switch strides.  Apparently, when you run you should only have one foot on the ground at a time.  As he slowed my stride to a frame by frame picture, he uncovered a deep secret.  I always have a little of each foot on the ground at all times.  Here's the kicker, he called me a "Scooter!"  What?  That's a horrible term.  Makes me sound like a slug!  So he's determined to teach me to graduate from scooting to actually running!  And here I was ready to call myself a "Runner."  I guess I'm not there yet.

On Saturday, Brian woke me up with the announcement that we were going to the beach for our big weekend run!  It was awesome!  Running along the beautiful Oregon coast on a much anticipated sunny afternoon with my sister!  Hence the title of this post...  We ran 7.4 miles and then hobbled around Seaside with the kids for a couple more hours.

Hooray for sun, physical therapy, a great husband, and actually enjoying... scooting!

A Heart Changed

I have tried to post the video from the party in a million different ways and it just won't happen.  I have to shorten it down from 19 to 15 minutes.  For now, I will just share a bit of what I said in case you weren't able to be with us.  This is my journal entry from March 24th...

So many emotions and memories flood my mind the days leading up to Jaron's first birthday.  God has been so good to us and carried us through all these things.  It's quite overwhelming...  I have felt utter despair, heaving crying that hurts my body, gripping, heart-racing fear, breath-held waiting, seething anger and protective outrage.  These are some serious emotions, I didn't realize I had this intensity inside of me.  But God... He has been HERE, closest to my heart, wrapping Himself around my very soul.
Lukas was reading the story of Daniel in the lion's den and it directed him to Psalm 34.  Amazingly fitting.  It's like David is speaking directly from my heart.  Verse 1 says, "I will praise the Lord at all times" good and bad.  And verse 3 represents the purpose of our birthday celebration, "Glorify the Lord with me; let us exalt his name together."  And I have felt verse 7, "The angel of the Lord encamps around those who fear Him, and He delivers them."  Although Jaron has not been delivered from his seizures, I have spent countless hours pleading with the Lord to take them away.  God promises in verse 17 "The righteous cry out and the Lord hears them, He delivers them from all their troubles." This has been a year, 365 days, of clinging to the Lord's sweet promises.
It's been one year since the birth of my fourth child.  One sweet boy and one Almighty God have changed my life forever.  Psalm 55:22 says, "Cast your worries to the Lord, and He will take care of you.  He will never let the good people down."  When Jaron was born, God began a work in me.  He has transformed my fear into freedom.  I have carried with me for so long, the fear and dread of losing a child, my husband or any other loved one.  I had a debilitating fear that was like a cloud settled over my heart.  I lost sleep, I lacked joy that God wanted to give me, I made myself sick with fear.  But God...  He had an abundant freedom waiting for me, if only I would surrender my fear.  He knew I would not lay it aside unless I was forced.  When I had to face the very real possibility of losing Jaron so soon, God took hold of my heart, wrenched it in His hands and then gently patched it back together.
I have a new heart!  Not one of fear and anxiety but one of trust and dependence.  I still have my moments of fear but my heart is not gripped by dread.  And more importantly, I know God will stand by my side or carry me through every circumstance, even the deepest heartache.  He will never leave me to face my pain alone.  Now I have hope and peace in knowing God and His people will give me strength, especially when I am faced with tragedy.  And I am resolved to love and trust Jesus no matter what befalls me.  When the storms sweep by, I will not be overtaken.  But with the Lord, I will stand firm forever!  I hope you too have that assurance... 

My, how he's grown!

At 1 year old, Jaron weighs 20 pounds 8 ounces!  He is definitely growing out of his baby bath.  We have ordered a bath chair and are waiting for it to be cleared through insurance.  Actually, we've been told there's a good chance insurance will not cover it, but we're hoping!

Here he is at 2 1/2 months, weighing 8 pounds 12 ounces and loving his bath time!  Amazing how time has flown and Jaron has grown this year.  Stay tuned for his big birthday bash post...

The Albaugh Gym

AKA Our living room...  Brian decided to pick up a workout/diet program in a box from Walgreen's a week ago, and the plan for the next 3 months of our lives changed course!  We are officially going to "Get Ripped in 90 Days!"  We have 10 workout DVD's with a detailed plan of implementation, 30 days worth of in-depth, 6 meals a day, ounce by ounce meal planning, hand weights, stability balls and a refrigerator full of fresh produce, flax seed, and lean meats.  And don't forget the water, 12 cups a day!  We even took before photos and did a family weigh in.  I will NOT be posting those :)  Yesterday, during our workout, Jaron laid on the floor watching us and he was making cute sounds!  I think he thought we were all there to entertain and dance for him!  So we had to take pictures...

You can barely see the little squeaker in the top left corner of the "gym" floor, laying on a boppy (behind Brian's legs). You can imagine the entertainment all 5 of us jumping around would be!

When you're a 30 or 40 pound little girl, a 1 pound tub of peanut butter is just the right hand weight.

The "gym" from Jaron's perspective.

Today is Day 8 and Brian and I have both lost 4 pounds!  Wish us luck, we gotta get back to the "gym!"

Snug as a bug

I always wanted a cuddly baby, I finally got him!  My mom used to tell me her boys were all cuddler's, so when Lukas was super independent and busy I was surprised.  He had places to go and people to meet, he is so extroverted!  The girl's were both similarly independent and very friendly.  My kid's have never once been called "shy."  They will talk to strangers anywhere.  One example...  About a year ago we rode the MAX (light rail) into "the city" to see a Beaver's baseball game.  On our way home, there was the usual night crowd.  You know, teenagers with their headphones in, all types of tattoos and piercings, big black hoodies, an attitude that says "Don't look at me or talk to me".  Enough to intimidate most adults.  But not my trusting and innocent crew.  They immediately were asking these guys names, who were in turn lying to them (giving fake names), and then being reprimanded by their buddies (for lying to a kid!)  Soon my little cuties had the whole car laughing and talking.   And my 2 and 3 year old girls were swinging on their knees and Lukas was telling jokes. The kid's loved the guy who was talking to them like a duck.  I'm pretty sure we knew everyone's REAL names, some middle names too, by the time we got off.  It was great!

Haylee, Hannah and Lukas at a Burgerville where Lukas told each passerby about his Basketball stats.

NOW, I've got my little snuggle bug!  Every night after all the big kid's are in bed, I settle in my recliner with a thick, cozy blanket and my baby boy.  He did not like to be touched much in the beginning but he did like to be held tight and rocked really fast.  Jaron gets to be a baby for a lot longer.  I don't think many almost 1 year olds like to be held for hours.  But he is oh so snugly.  This is the only time he really gets "tummy time" because he cannot ever be unsupervised on his tummy or he would suffocate, since he can't move his head without help.  And when we are with him and put him on his tummy on the floor he gets upset because of the firm carpet and his hard tube that is in the middle of his belly.  So when he can lay on someone's chest, he tolerates his "tummy time" much better.  Needless to say, we have spent many, many, many hours snuggling in the rocking chair.  I can't say that about the first 3 busy bodies.

I guess I got the best of both worlds, and I'm loving it!