Preschool Mother's Day, Dentist and Jaime's Baby Shower!

Lukey Poo

Lukey Poo is growing and changing so fast!!  It has been wonderful to watch and notice an improvement in his hearing after having tubes put in last week.  He now startles to the kids yelling, dog barking, and the piano.  It is really encouraging!

We've had a busy week of making appointments and getting more appointments set-up.  This week he has a weight check with his pediatrician, another ear mold appointment (we also get to pick up his new hearing aid - did I forget to mention that Norman chewed his left aid 3 weeks back?), and his 4 hour EEG appointment on Thursday.

I need to apologize.  I reread my post from last Thursday and realized I did not sound grateful. I need to take a step back and focus once again on all the blessings and answered prayers.  We had an amazing staff work with Luke last Thursday at his ear tube surgery!  Praise God his surgery was a success, he recuperated just great, and was back to his normal self by that evening!  One praise!  He had gained weight from his last check and is now at 9 lbs. 1 oz.  Second praise!  His hearing has improved!  Third praise!  We've been blessed with a beautiful son, who is growing and becoming stronger every day.  Fourth praise!

It is easy to get wrapped up in the negative of things.  And, I was completely guilty of that last week.  In all honesty, it's been a stressful couple weeks.  Stefan started a new job on Monday and it's been wonderful and crazy busy all together.  I've had a rough last week and half, where I'm just not quite feeling myself.  I put a call in to my doctor and she ran some blood work today.  As of now, I'm wondering if my symptoms are chalked up to fatigue.  I've been running full steam ahead for 3 months now, and I feel like my body is telling me to slow down.

All of these are not an excuse though.  I look at everything going on in the world right now, and realize how truly blessed I am.  May each of us see the blessings God has given us!

We are continually amazed by your support and encouragement.  We love you all so much and pray that God will bless your week ahead.

Lots of love, The MN Juliens

Track & Field - 2014

 Just wanted to get some pictures up tonight. I"ll post more tomorrow!  Thanks Coach Lovas. The kids had a blast!

Luke - Ear tube surgery

Lukey Poo had his ear tube surgery this morning.  Surgery lasted all of 10 minutes and he did super well.  We are waiting to be discharged as I type.  I forgot to mention to the nurse that he was supposed to get an X-ray and they had no orders for it (you'd think I wouldn't have to be the one to remind them, oh we'll).  So we are waiting to go down to the lab.

This morning I had the amazing experience to pray over Luke's doctors before surgery.  When I asked, I wasn't sure what to expect.  I definitely felt His presence as I prayed.  Thank you God for allowing that opportunity to witness and ask for guidance and protection all in the same breath!

Thank you everyone for your prayers!

Lots of love, The MN Juliens

Addie's Prayer

Tonight, during our dinner devotion, Addie was asking all about heaven.  She then asked, "Well if people decide not to believe in Jesus, where do they get to go?"  Stefan explained that then those people are separated from God.  Addie then said, "Well I certainly don't want that.  How do I make sure that I get to be with God in heaven forever and ever?"  We said you can ask him in your heart. 

Here was her prayer.

God, I love you and I want to be with you forever.  Please come into my heart so I can go to heaven and be with you.  I love you. Amen.

So sweet!!! 

Sarah & Fergus visit and Luke update

 

James received a sword in his Easter basket.  Probably his most cherished present.  He has wanted one for the past month, ever since playing with Jacob's sword! He is one happy guy!  Last night I found him cuddled up in bed with his sword.

We had a wonderful visit with Uncle Fergus and Auntie Sarah this past week!  The weather was absolutely beautiful, so we were able to enjoy lots of time outside going for walks, egg hunts, playing baseball, going to the park and having a bonfire. :) Thank you Sarah and Fergus for traveling all the way to MN to see us.  We miss you already!

Update on "Lukey Poo"

Weight - For the past 2 weeks we've been monitoring Luke's weight really closely.  He hadn't gained more than 2 ounces in the past 4 weeks and it was quite alarming.  I went from breastfeeding to exclusively bottle feeding.  We've been feeding him a mixture of breastmilk and formula, to try to increase his calorie intake.  He seems to be responding to the bottle, extra feedings, and higher calorie in take.  He went from 8 lbs. 6 oz., to 8 lbs. 14 oz. in two weeks.  She wants him to be gaining .5 oz./day, so he is on track at the moment.

Endocrinologist - We met with Luke's new endocrinologist last week.  It was a lengthy appointment where we discussed anything and everything that might be hindering Luke from growing.  The doctor wanted to get blood work done to determine if hormone levels might be the reason.  Originally, they needed to do 5 blood draws.  This made me quite anxious, as we've had a lot of difficulties holding Luke down to even get 1 good draw.  We ended up going in for 3 successful draws.  On the last one, they got the okay to draw a large quantity, so we didn't have to go in the remaining two times.  Thank goodness!  All tests just came back this week negative, so nothing there.  Even though that doesn't give us a reason, we are really thankful that nothing is wrong with hormones (as this would have been a daily shot).

Neurologist - Yesterday we had a follow-up with Luke's neurologist.  Our pediatrician and neurologist had wanted another EEG done prior to our follow-up, so we headed down to the Noran Clinic nice and early and Luke had another EEG.  He again, was a trooper.  Slept through the entire thing, but this time, actually woke up for the flashing lights portion.  After, I met with the neurologist and she said there had been some changes in the EEG from last time, more abnormalities (especially when he was in the process of waking up).  She wants him to have another EEG in 2 weeks, this one will be 4 hours long!!  Not looking forward to that one.  We talked about our concerns.

1. Seizures - there is a strong possibility for an onset of seizures.  When you have any brain abnormalities, the chance of seizures is very high.  We haven't seen any yet, but do notice leg twitches.  She said this could either be seizures or just normal baby twitches/startle movements.

2. Curve in back - Luke's back is starting to curve.  Our PT is not sure if this is due to his head tilt, lack of core muscles, or the possibility of scoliosis.  They are going to do an entire body xray next week (it's called a baby-o-gram).

3. Feeding - His feedings have gone SO much better now that he is exclusively bottle feeding.  He happily takes down an entire 3-4 ounces effortlessly.  Our neurologist did say if feeding becomes an issue again a feeding tube is a good sort-term solution.  Even though that solution seems scary and too drastic, she assured me it is quite simple.  Prayers for continued weight gain and good feeding would be greatly appreciated!!

Next Thursday Luke has his ear tube surgery down at Minneapolis Children's.  Prayers would be greatly appreciated!  Every time we see a doctor, he gets blood drawn, or someone else pokes and prods, he takes a step backwards in feeding.  I get anxious because everyone is watching his weight like a hawk and I sometimes wish we could just be at home, where everyone is relaxed and Lukey eats well.  I have to continue to count our blessings in having such amazing doctors in Luke's life and they all want the same thing, to figure out how best to help Luke .  I am continually asking God to grant us strength and patience.

Thank you again everyone for all your prayers, emails, and cards.  If I don't get to personally thank each and every one of you, I am sorry.  It does mean a lot to us.  We are so very blessed and thankful for all the love and support!!! I hope you all had a wonderful Easter!!  :)

Love and blessings,
The MN Juliens

Post-dinner Family Time

Our post-dinner family time tonight consisted of Addie reading to little Luke, while her brother James, "whacked the guys" on the Wii.  :) Love it!!

Dr. Brown's - miracle bottle!!!!

To start off with, thank you all for your immediate prayers!  Last week was a bit emotional.  When we went in for his 4 month check-up, he hadn't really gained any weight in the past month.  I immediately knew we were in for another round of tests or something. 

Luke was weighed again last week, but had only gained 2 ounces in 5 days.  Our doctor called that evening and explained that she was putting in a referral to see the endocrinologist over at SLP.  They then put in for more blood work.  This time they need 5 test tubes worth!!!!  This means 3 different blood draws.  We went in for our first blood draw on Friday and had success on the first poke! Hallelujah!! I told the lab tech, Anna, that we would call and specifically ask for her next time!

Our doctor called this morning and said that the first round of tests came back normal.  They were testing his thyroid, glucose, and hormone levels.  I'm not exactly sure what all is a part of the next round of tests, but we are happy that the first ones came back fine.

As far as eating is concerned, my mom's friend Barb (who is a nurse down at Children's), recommended Dr. Brown's bottles.  So far, it's been a miracle bottle!  He can down 4 ounces in a record time of around 15 minutes.  This process use to take 45 minutes at least and he would never finish a bottle.  At the moment, we are mixing formula and breast milk together to make a higher calorie bottle.  Time to bulk up Lukey Poo!!

God has really answered our specific prayers, for Luke to start eating well.  Meal time is much more enjoyable for all us, as he happily sucks down his bottle!  We have our endocrinology appointment next Wednesday and we will also weigh Luke at this time.  His last weight was 8 lbs. 6 oz.  At this pace, he'll be able to stay in his infant car seat until he is 2!!  :)

Everyone, thank you again for your prayers for strength!  We are constantly reminded of God's love and the love of our friends and family around us.  Thank you!

The MN Juliens

Prayer request

We just got off the phone with our doctor.  Little Luke is really struggling to gain weight, and it's causing concern for all of us.  He's plateaued on his weight.  We've started adding formula to breast-milk bottles and have started topping him off after he is finished breastfeeding.  Problem is, he is a really bad bottle feeder.  The doctor tonight said we might try JUST feeding by bottle for a day so we could see how much he actually gets.  I'd hate to do that because I know he will not get enough! 

The plan for know is to check his weight again next week, but if he hasn't gained weight, then we'll have to look at other options. I'm scared at what they'll want to do.  I really appreciate your immediate prayers.  Prayers that he feeds really well and that he gains weight!  Thank you!

Snow & getting ready for Easter

 We had a HUGE snowfall last week.  Olaf is pictured above! His face didn't last long. I turned around and Norm had eaten his nose, and both cucumbers were found in James' mouth. :)

 Addie told me yesterday, "I wish I could be the mommy in this house!"

 Daddy time!

 Daddy was in charge of decorating eggs with the kiddos! 

Some pics

My dear friend Katie came for a visit last week.  I was her nanny back in the day.  The kids and I had a wonderful time hanging out with her. :)

 Lukey Poo and his tongue! It's always seems to be moving!

Luke is really improving on his tummy time!

Luke's 4 month check-up

Luke and I just visited Dr. Benson this morning for his 4 month well-child check-up.  AGAIN, he was sleeping!  Man, he can't catch a break.  He has been deep in slumber for every well-child visit he's been to.  At least our nurse got to see him awake and active.  Someone there believes me that he opens his eyes!

Luke has grown in length and his head circumference, but is making minimal weight gain.  He has hardly gained anything in the past 3 weeks.  Not good!  We decided on 2 things to try: put in an extra feeding throughout the day and giving him one of his feedings by bottle with some high calorie formula mixed in as well.  He is still only 8 lbs. 5 oz.

Going to Luke's check-ups have become a really anxiety filled and stressful event for me.  I remember with Addie and James, it was a no-brainer.  When I go with Luke, it seems like everything is already going against him, and then he does things like, sleep through his entire exam.  Seriously, you can't make it up!

I know that Luke has many more ups and downs to come, and it is a wait and see game.  But it feels so SAFE at home, and so uncertain when we go visit the doctor.  I really need to ask God to continually give me peace when we visit the doctor, and to let go of trying to stay in-control.  

On a side note, Addie and James are fighting over who gets to feed Luke his bottles.  Tonight was classic to watch.  Luke doesn't starve for attention that's for sure.  :)

Lots of love, The MN Juliens

Luke - PT and ears

Physical Therapy: 
Luke had his first day of physical therapy down at Children's West in Minnetonka.  Our PT is wonderful and she gave us lots of helpful activities and stretches to focus on with little Luke.  Her main concern/focus is his neck.  She said that due to him preferring the backwards C position the first 2 months of his life, his neck muscles are completely stretched out.  He really doesn't have much control of his neck in certain positions.  It is really helpful to know what to work on with him at home and to be purposeful when we play and interact with him. 

Ears:
Luke is scheduled for ear tube surgery in 1 month.  They will go in and first see if they can drain the fluid but making a tiny secession.  If not, then the doctor will just go ahead and put the tubes in.  The tubes then need 2 weeks to settle and heal before our audiologist will perform another ABR.  The ABR test will determine if his hearing has improved.  It would need to improve drastically to no longer consider cochlear implants.  We are fairly certain that he will still need implants, and we would have his pre-operation meeting when he is around 6 months old.  As far as how early they will perform the surgery is still up in the air.  Everyone we have talked with said they'd like to move as quickly as possible. So it is possible he could have the implants as early as 7-8 months.  This would be AMAZING!

We are doing well in the Julien household.  We've had a busy week of work, school conferences for me, last night of swimming lessons, and a Canucks game for Stefan!!  Thank you again for continually lifting up our family in prayers.  We feel God's love so ever present in our lives.  Love you all!!

:) MN Juliens

Oh Canada

Update

Nana and Papa came for a 4 day visit! It was wonderful to see them again and as always, we were blessed by their visit.  :)

My brother and Maari also came for the weekend.  We had a great time visiting.

Update on Mr. Luke:

Ears: Luke received his new ear molds on Thursday and they fit perfectly! No more squealing all the time.  He's been able to keep them in all day now.  Our audiologist took another timpani-gram, and it still came up flat (means that their is still fluid in the ear).  We have an appointment next week with the nurse practitioner at Children's ENT clinic.  From there, we will schedule tube surgery.  Two weeks post surgery, he'll have another ABR performed to see if draining fluid has changed his hearing loss.  Most likely, it will not change dramatically.  Then, we can schedule his cochlear implants.  As far as schedule, we are not sure exactly how soon they'll do his implants, but they do want to move quickly, which totally works for us!

PT: Luke starts his first round of physical therapy next week down at Children's West.  We've already been working on his neck strength and stretching out his pectoral muscles and legs. 

Genetics Testing: Our insurance approved the genetics testing, so they can go ahead check for 72 syndromes.  If they find a match, this will give us some answers.  It will allow us to know what to focus on.  There is a strong possibility that they will not find a match.  If this is the case, it will just be a surprise. 

Luke continues to put on weight! He's over 9 lbs, and I'm excited to get his official weight next week at his 4 month check-up.  He's feeding really well, and often sleeps straight through the night.  Addie and James continue to be big helpers to their little brother and are always giving him LOTS of attention.  :) 

We are about to head out for a walk here in MN.  I wouldn't call it warm today, but it's an improvement from the winter we've just survived.

Lots of love, The MN Juliens

P.S.  On a side note, Addie starting reading this weekend!  She had been really interested in sight words lately.  She had checked out a bunch of Dick and Jane books from the library, and officially read through 2 of them.  Pretty fun to watch!

Kindergarten Round-up

Addie starts kindergarten next year at Glen Lake Elementary School.  We had the pleasure of going to her school for Kindergarten Round-Up last night.  What a blast!!  You can tell how excited she was to "practice" riding the bus!

Romans 8:25-26

Stefan and I were at Bible Study last night, and we were on our final night of Jim Cymbala's When the Spirit Moves study.  The verse we were studying was from Romans 8:25-26.

"But if we hope for what we do not yet have, we wait for it patiently.  In the same way, the Spirit helps us in our weakness.  We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express."

This verse spoke directly to me.  Last week Tuesday, I felt this overwhelming presence, and trust me, it wasn't a good one.  My heart started beating fast, I started crying, and I can only imagine that I was having a panic attack (never had one before).  No matter how hard I tried, I couldn't fall back asleep.  I got out of bed, not knowing what to do, and found myself face down on the kitchen floor.  I don't remember what I prayed for, but I know I was crying.  I just keep my head down until I felt that awful pressure and presence leave me.  In return, God's spirit just washed over me, comforting me!

Through all of our trials, it has become very evident that Stefan and I are not in control.  We never have been, but it has always felt that we were, somewhat!  God has brought us to our knees.  We know we cannot do it alone.  We know that thinking about tomorrow and worrying causes too much pain and anxiety.  He only asks us to trust in Him today.  He specifically interceded for me last week.  I was in too much pain to even know what to pray for.  He already knew my pain, and knew my prayers.  He just let me cry.

Thank you God for always loving us, for loving our children, and for being able to know, without a doubt, that you will never leave us.

Stefan and I still find ourselves grieving, and probably will for some time.  But at least we are confident that all of this is part of God's great plan, and He WILL use Luke's life to glorify Him.

Luke continues to grow and it is truly a blessing to watch!  He now weighs over 9 lbs.  He gets his new hearing aids on Thursday and also has his first IFSP services.  Thank you again for your notes, meals, kind words of encouragement and prayers.  We feel so surrounded by love!

Love, The MN Juliens

The kids