Another trip to Children's

The past 2 weeks have been pretty stressful around the Julien household.  Little Luke has never been a very good eater.  He was really fussy as a newborn, but then mastered breastfeeding (somewhat) by about 1 month.  But then he suddenly regressed and has been miserable the past 2 weeks.  Feedings were sometimes taking as long as 1.5 hours, and he was so incredibly gassy afterwards that he would spend 30 minutes just screaming and in a backwards C position! 

I was starting to get really concerned with not only his poor feeding, but his neck muscles.  Since he always seemed to be miserable after feeding, the only position that felt good to him was when his neck was bent backwards.  After his bouts of crying, it's like all muscles gave way and his head seemed to wobble and he'd slammed his head into our shoulder and pass out from exhaustion.  I just felt like something wasn't right and I made an appointment with his doctor. 

She was able to see him on Wednesday and was also concerned.  She then mentioned that his muscles were really tight, and wondered if he had too much muscle tone.  She made us an appointment at Children's to see the neruologist. 

That night, as Stefan and I googled "too much muscle tone" we were immediately alarmed and sick to our stomach.  CP is a leading diagnosis for babies with too much muscle tone.  Again, our emotions skyrocketed and all we could do was pray.  Our specific prayers were, 1)for Luke to start feeding breastfeeding again, 2)sleep - he was up every 2 hours at night, 3)neck muscles, 4)for him to be cognitively okay.

Thursday morning, we headed to the Noran Clinic for Luke to get an EEG done.  What a crazy process.  They had to first scrub his head with exfoliate solution, then attach 25 electrodes with this glue gunk, and then wrap his head in gauze so they didn't fall off.  The entire test took 45 minutes, and he was quite the trooper. 

We then had to wait another 30 minutes to see the doctor.  Meanwhile, we tried feeding Luke in the waiting room and again he was overcome with pain.  Crying, arching his back, screaming, so when we finally saw the doctor he was in rare form. 

Upon entering the room, I was overcome with emotions, but felt God's presences so close to me.  The doctor opened with, "So tell me about Luke."  To which I started crying and replied, "Can you just tell me how his EEG looks!"  Praise God, his EEG looks normal.  He has a spots at the back of his brain that look slower she said, but this could either be nothing, or something.  She is recommending we do some further genetic testing to rule out multiple syndromes.  She also recommended that I stay home for a bit more.  I was supposed to go back to work on Monday, but knew that there was no way I'd be able to concentrate.

The neurologist also said he did have lots of muscle tone, but that seemed to come in waves as he would get agitated.  She said he didn't look like a CP baby, which was an answer to prayers.   She also gave some thoughts on his neck muscles.  Since he arches his back so much, he has strongly developed neck muscles in one position, and he control of his neck in the forward position is just lacking.  We went home with a bunch of activities and exercises to try out with him. 

We then saw the genetics NP.  We were there for another 1.5 while she did a complete exam and we went through a lengthy family history and genetics screening questionnaire.  Nothing was noted at this time.

Our next step is for him to have an EKG, Brain MRI, MRI (ear), and 72 genetic tests.  This will all be done on the same day (in about 2 weeks) and he will need sedation for them.  We continue to ask for your prayers!

I know, that is a lot of information.  It has been a lot for us to take in as well!  God is so incredibly good though.  Stefan and I know that everything is out of our control, and that all we could do is call upon our father.  He is good!  He does hear our prayers and he knows our desires.  He gave us the biggest answer to prayer.  After we left the hospital that day, we found out he

1. didn't have CP
2. cognitively was okay
3. immediately started successfully breastfeeding - seriously!!! He was like a changed baby.  Jeff and Carley saw this as well and said it was like looking at two different babies!
4. started sleeping again - last night only getting up at 3am.

God is amazing! He does answer prayers!  I know we have many more emotional roller coasters to ride, but through all of this, we know God will go before us, behind us, and beside us.  We know that through everything, God will be glorified!

Thank you again for all your prayers!!  They are so felt and we have such a strong sense of his Holy Spirit.  :) 

Now to get back and join my family in the basement! We are watching the Olympic hockey game.  I can hear James shouting, "Go Canada, go!"

Love, from the MN Juliens