Thursday, April 24, 2014

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