Monday, March 16, 2015

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

1 comment:

Maureen said...

Thank you so much for the update. I pray routinely for you and Stephan to be strong and comforted. I pray for love and comfort for little Luke. Love Aunti Mo