Our Chunky Monkey!

I am happy to report that Little Lukey Poo is almost 3 pounds heavier.  Since having the G-J tube placed about 7 weeks ago,  he went from 13 lbs. to 15 lbs. 11oz.  He's actually got chunk and fat rolls on his legs!  Yippee for a chunky Lukey!

As I type this message, Luke is in the process of getting his new G-J feeding tube.  Instead of a Popsicle stick wrapped with surgical tape, he will have what is called a Mic-Key button.  The button is about the size of my thumb and won't have a long tube attached at all times.  This means the chances of accidentally pulling on the chord or having it come out are VERY slim. Yeah!

Thank you for all your prayers!  We pray that today's surgery is successful, without complications and that our big guy can come home this afternoon.  We pray that Luke continues to gain weight and that he grows developmentally!!  As Addie would say, "Dear God, let Luke's brain and body grow big and strong!!" 

Love to you all!

:) The MN Juliens

At Home

Thank you everyone for your prayers this past week.  It was a long 8 days and 7 nights that Luke spent in the hospital, and we are so thankful to have everyone back home!!  J-tube feedings have been going great.  Stefan and I are quickly learning the tricks of a successful tube feeding. 

We would appreciate continued prayers for Luke's tummy.  He has been vomiting at least 1 time a day, often 2 or 3 times.  I called the on-call GI doctor today and he said this is normal.  Because Luke does not have food in his belly, his stomach bile and saliva all mix together and are causing him real discomfort.  We were taught to vent or "air-out" his tummy 1 time a day (open his G-tube and just let it drain).  That is proving not to be enough.  Today I opened his G-tube and vented his tummy 3 times, and he still vomited 2 times.  He feels so much better once he is done, we just feel so bad that he is throwing up.  We pray that with time we will be able to figure out the perfect venting time that our little guy needs.

It was fun to have family time together!  This morning we did the Epilepsy walk through Upsher-Smith Labs at the MOA.  What a great cause, and what a blast!  The kids favorites were riding on the rides, walking, eating purple cupcakes, and being able to take home a HUGE bucket of Legos. 

Lots of love to you all,
The MN Juliens

Luke - Post surgery

Lukey had a successful  GJ-tube surgery yesterday.  He went in at 3:45pm and we finally got to see him around 6:15pm.  He was REALLY sleepy.  We stayed with him until around 9:00pm and went home to sleep and be with the kids.  That was a really hard decision, but we knew he was in good hands.

This morning at 7:00am, Stefan received a call that Luke had had a couple seizures overnight, one of them being a prolonged seizure.  They moved him to the PICU on 5th floor.  We hurriedly got ourselves ready, Grandpa came over to be with the kiddos, and we raced down to Children's.  We were really shaken and feeling a lot of anxiety and guilt over leaving him along overnight.  When we arrived, they had just transferred him and were trying to get him stable. 

Already this morning we've seen his new on-call doc, the GI doc gave the okay to start feeding, he had a chest x-ray (everything looks good), and the on-call neurologist is on her way.  Seizures have stopped, Praise GOD!!! They have given him an extra dose of seizure meds to put a stop to them, and so far it seems to help.

As far as Stefan and I can determine, we really believe that this influx in seizures overnight all stems from not having food for the past 42 hours.  In the past, he tends to have seizures when he is sick or throwing up his food.  We pray that once they start his feeding, seizures stop and are controlled with his regular dose of Keppra.

With this little jaunt down to the PICU, I'm assuming our stay at Children's has been increased.  I am thankful that I am off until next Tuesday, and pray that Stefan will be able to get a bit of work done this week.

Thank you again for all your prayers, texts, and visits!  When we have more info, we will update the blog again!  Love you all.

A Family Update

Hello Everyone!  It's about time, eh?  I can't believe it's been almost 6 months since our last update!  We've been enjoying the pleasures of family time, that's my excuse.  I think it's a good one.  :) 

Addie Rae - A sweet, spunky and precocious Kindergartener!  She is LOVING school, reading "chapter" books, and enjoys playing with friends at school.  She told Stefan the other day that her bus buddy asked her to marry her...  Oh the fun conversations you have with 6 year olds!  She is the best big sister, and absolutely adores mothering Luke and such a big help.  James and Addie love playing together, and he is ecstatic when she gets home from school every day!  She has now lost 3 teeth, and has the cutest smile ever. 

James Warren - A curious, active, and tender-hearted 4 year old.  He is continually reminding us that next year he gets to go to preschool, then the next year Kindergarten, and then he'll finally get to be as big as Addie.  His main goal in life!  James enjoys playing all types of sports, but his favorite lately has been baseball with dad.  They play countless hours of catch in the house and batting practice in the driveway.  He also loves playing with his buddies!

Luke Walter - aka Lukey Poo is now 16 months old!  His favorite things to do are cuddle, have us help him jump in our lap, read books with Addie, and hang out with his brother.  Last week, Luke sat up during PT.  A huge milestone for him!  He used all of his strength in his arms to balance his body in a sitting position!!  You can see the progression of pictures below.  

Luke is growing length wise and is now in 9 month clothing, but has continually struggled to gain weight since October.  He is still just 13 lbs. 

I took Luke down to Children's on Thursday to his Feeding Clinic appointment.  We had them do a swallow study and found that Luke aspirates the majority of his milk while bottle feeding.  He seems to do fine with spoon fed solids, but not liquids.  This finding confirmed A LOT of the issues he has had the past 3 months.  He has been on and off sick for what seems like forever!!

Because of the swallow study findings, we went to Children's Minneapolis ER right after the appointment.  We spent from 2-8pm in the waiting room and in the ER.  Luke was admitted that night to the 8th floor.  We were originally hoping they could put in an G-tube on Friday, rest over the weekend and go home on Sunday.  But nothing moves super fast in the hospital.  We ended up not even meeting with a doctor that Friday until 6pm.  Luke hadn't been able to eat or drink anything until 6pm, and was VERY hungry. 

He spent the weekend just hanging out in the hospital.  He was lucky to spend lots of quality snuggle time with friends and family over the weekend. 

His surgery is set for 3pm this afternoon.  He will receive what is a called GJ-Tube.  The G-Tube goes into the stomach and J-Tube goes into the small intestine.  They will experiment with his feeding the next couple days in the hospital to see if he is able to get bolus feedings (all the milk in one feeding) or continuous feedings (slow-drip throughout the night-time).  At this point, we are unsure what type of feedings Luke will need. Selfishly we pray that he is able to have bolus feedings, if not right now, eventually.  

We had been discussing G-tubes for quite some time now.  We originally thought it would be nice for Luke to have one for times that he is sick. He has a REALLY hard time keeping down food when he is sick (coughs make him gag, which consequently make him throw up).    I think the hardest part through all of this, was finding out that a G-tube was a necessity, not supplementary. 

We are thankful that modern medicine allows a way for our little guy to receive the nourishment he needs to grow.   We are thankful for the expertise of all the doctors and the kindness of all the nurses. He has stayed in the hospital on his own overnight, and I so appreciate the nurses' willingness to facetime and let me talk with Lukey before he goes to bed at night.  We are thankful to all our friends and family who have come to visit Luke or drop off meals/food.

The surgery itself takes only 30-45 minutes.  Please pray for the team of doctors, for Lukey, and for us.  Pray for peace, understanding, and comfort.  Thank you all for your continued support!  

We love you, 

The MN Juliens

MN Julien Life Update

Wow, it has been forever!  I looked back through our blog and realized I only updated it a couple times this summer!  It's a good thing I guess.  It means we've been busy enjoying and doing life. :)

Addie started kindergarten this fall at Glen Lake Elementary and is in Mrs. Brennan's class.  She loves school, new friends, and comes home every night eager to share something she learned.  Her favorites at school are recess, Spanish class, math and being with new friends.

We have had a fun fall season of vehicle fairs and activities: Harley Hopkins, Minnetonka Vehicle Open House, National Neighbors Night Out and the Chan Fire Station.  James and Addie love climbing around on all the trucks!!

At the end of August, we were blessed to go on our 4th (?) annual trip up to Lucas & Jessie's parent's cabin.  They are such amazing hosts and we always have a wonderful weekend!  Highlights were: reading stories in the sauna with Lucas, tubing, playing hide-and-seek, playing with the babies and fishing. :)

James learned to finally balance on his Strider this September.  He had spent a morning at Grandpa's house, and after an entire morning of riding, came home confident on the bike.  That's all it took!  Now he rides that thing to the park and when we go to get Addie at her bus stop.  Addie was encouraged to try as well, so Grandpa took off the wheels of a small bike for her to try.  She is so incredibly timid, but at least she is practicing.

Addie turned 6 this fall!!  She had her first friend birthday party and LOVED it!  We invited a few of her friends and had a tea party.  Grandma, Nana, Auntie Julie, Mimi and Mom all dressed up for the party as well.

Stefan and I were lucky enough to go to NY and Boston.  Stefan had a work visit on Long Island for a day, so we were able to fly together for a long weekend.  We spent 2 nights in NY.  I spent 1 day on my own in NYC.  I was so proud of myself. I woke up early, caught a train to Penn Station, then hoped on a Bus Tour.  I was able to see the 9/11 Memorial (amazing), went on a ferry ride past Ellis Island and the Statue of Liberty, saw the Brooklyn Bridge, Rockefeller Center, Theater District, went shopping, Time Square, ate the best slice of pizza, and had a blast (even though it rained the entire day!!).  The next day Stef and I went to the top of the Empire State Building.  Breathtaking!!  We then caught a train up to Boston to visit Dan and Maari.  Boston is a gorgeous city.  We had an amazing time and Dan and Maari were wonderful hosts and tour guides!  Thanks you guys for a great weekend.

 
This October, my sweet Grandpa Gene went to be with Jesus.  We miss him so much already.  He was a wonderful man.  Heaven gained a gem!  We celebrated his life today at his funeral.  It was wonderful to gather friends and family, and to be able to share stories of Gramps.

Updates on Little Lukey Poo:
-Genetics testing all came back negative, nothing found again.  We have a follow-up in December where they may choose to run another series of tests.  At this point, they say it is a long shot that we will find a specific syndrome.
-Luke had his first helmet made in July at Gillette, didn't fit.  Second one, in August, didn't fit.  Last one, in September, gave him a pretty nasty cut.  So... we were discharged from Gillette and sent down to Children's for a second opinion.  We just met with the team yesterday, and they are going to give it a try!
-PM&R doctor had him fitted for leg braces to wear at night.  We've only tried them once and he screams in pain, so I'm not sure how we are going to ease into them. :(
-Luke is now a whopping 13 lbs. 2 oz.  Such a peanut!  We saw a family at DSW this weekend, and their daughter was 2 years old and only 19 lbs.  It so gave me a glimpse of what Luke might look like.  This tiny little sweet peanut!
-Meet with the neurologist last week.  Stefan and Warren were able to also attend the appointment.  Nothing new, he just wants to follow Luke every 8 months to make sure his head is growing and that he is not having any seizures.
-BEST UPDATE: Luke was chosen through Starkey Hearing Foundation and the MLB All-Star game to receive a free pair of Starkey hearing aids.  Bill Austin, the CEO, was the one who fit and created his hearing aids.  What an amazing experience!!!  They are in the ear aids, and work beautifully! 

Little Luke continues to grow and gain new abilities.  Thank you again for all your prayers!  We are truly blessed.  Love, The MN Juliens

Addie teaching Luke how to play the piano.