Thursday, March 27, 2014

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. 

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

Sunday, March 23, 2014

Oh Canada


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!