Camping - Memorial Weekend

We had such a great time camping Memorial weekend at Sibley State Park.  It was a gorgeous weekend spent with a perfect group of campers.  Love hanging out with family, friends, and the dogs!  :)  Also, what a great day to remember a dear loved one, Aaron!

The kids missed "tenting" so much, they decided to spend the following 3 days sleeping on the floor.

Then Grandma got the idea to get out their tent.  She set it up in their room as a surprise, and the rest is history.  They are going on 7 days of sleeping on the floor for both naps and night time.  James usually lasts about an hour, and then I find him in his own bed.  Addie toughs out the hard floor ALL night!  :)  We'll see when the novelty wears off!

T-ball

James had his first t-ball game last night!  He was so excited he could hardly contain himself.  The entire car ride to the field, he kept asking, "Is everyone excited to watch me? Are you just so excited to see my game?" 

6 month check-up

Lukey Poo had his 6 month check-up today!  :) Like the rest of his check-ups, I completely expected him to be sleeping.... but he surprised us all and was wide awake the entire time.  It was the first time I heard our doctor say, "He looks happy and healthy, AND what beautiful blue eyes (she'd never seen them open!!!)."  I know I don't need the reassurance, but it felt so incredibly good to hear her say that. 

Praises:
-His weight is up to a whopping 10 pounds now!
-He no longer needs to fortify his breast milk bottles anymore
-His head and length are both up
-His spine X-ray came back normal (for the most part)
-He gets to start trying solid foods tonight!
-He started sitting up in the Bumbo seat (with lots of support!)

Again, I have this overwhelming sense of peace and happiness.  I know that I don't need other people to tell me that Luke will be okay, but it sure was a blessing to hear it from our doctor.  When filling out his pre-exam form, they ask you a series of milestone questions, and nearly all of them he hasn't reached yet.  It's hard to go to a doctor's appointment knowing that your son isn't doing what a typical 6 month old is doing. 

On my walk this afternoon, I realized that's okay.  He isn't typical, but I know that he is PERFECT!  I am able to have complete faith that God created him exactly the way he is, to do amazing things in this world, AND I get to be a part of it.  Thank you God for that blessing!!

Lots of love to you all!  I'll post some pictures soon from our camping trip this past weekend! 
The MN Juliens

Mother's Day, Bath Time, Addie's Graduation & Our 10 Year Anniversary

Mother's Day at Julie's!!  So blessed to have these ladies in my life. :)

Rub a dub dub, 3 kiddos in a tub!!

Addie had her preschool graduation today from All Saints Lutheran Church!  What a lovely service they put on.  Addie has been incredibly blessed to be a part of such a wonderful school.  We will miss ASLC, but will see you in a year when James starts!

Stefan and I have been married for 10 years.  We have been so incredibly blessed, especially the gift of our 3 precious little ones.  We plan on celebrating just the two of us next weekend, but were SO happy to share the evening with our family!  After dinner, we went home and watch our wedding video!  Addie and James get such a kick out of it. :)

We went out to eat after Addie's graduation.  Five other families from Addie's class happened to be there.  The kids had a blast playing! I'm not sure the waitress did though!! :)  Good thing it was a beautiful evening!!!

God is SO good!!!!

It was 4 months ago today that we found out little Lukey was severely hard of hearing.  His hearing loss was at 90 decibels for high pitch sounds, putting him at the severe to profound hearing loss.  We were told our first option would be a cochlear implant some day.   Our second option was to pray for a miracle.  We were told that he had a lot of fluid in his ear, and with ear tube surgery, his hearing loss could increase as much as 30 decibels.  Our audiologist said this would be a miracle! 

Well... God is good!  Luke and I went in today for his 6 month ABR post-ear tube surgery and his hearing loss is now at 65 decibels, putting him in the moderate to severe range instead.  He is no longer a candidate for cochlear implants, and will be able to hear and understand speech with hearing aids!!!!!  Praise God!  I am overwhelmed and overjoyed by His miracles!

Thank you for your prayers!  Honestly, I don't think I said anything for at least 5 minutes when the audiologist told me the news.  I couldn't process it.  I had been so consumed with organizing appointments and looking at dates to schedule his cochlear implant surgery, that the news didn't seem real.  All I know is I haven't been able to stop smiling all day!  Thank you God for your miracles, and thank you for this miracle in our life.

:) Love, The MN Juliens

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