Thursday, February 06, 2014

Hearing Aids

Luke received his hearing aids today!!!!  It was so precious to watch his little face as the audiologist turned them on for the first time.  He immediately went still, looked right at me with wide eyes, and then his little lip puckered into a sad face.  :)  Perfect!

Our new audiologist, Laura, is wonderful and we are so lucky that the clinic is only 4 miles away.  She spent an hour and a half helping me learn how to turn on, care for, and adjust Luke's new hearing aids.  The ear molds are a little loose so they are giving out a lot of feedback.  She placed an order for new ones, and we should get those by Monday.

Laura explained how the hearing aids will benefit Luke right now. Without his aids, he is not able to hear really anything.  Staying at this state, your nerves/ears start to atrophy.  Having hearing aids will amplify sound, so that his ears will understand that the world around him makes noise.  We will not need to shout or talk loud for him to hear, but long-term, hearing aids will not help him decipher speech. We feel so blessed that he can have the hearing aids for now, and at least hear something!!!

Addie and James were so excited to have him try out his new tool.  They spent the afternoon shaking toys, singing songs, and reading to him.  It was amazing to watch him track toys and turn and look straight at one of the kids who was talking to him.

From here we check-in with our Audiologist every three weeks.  Since babies ears grow so quickly, new molds will need to be made quite often.  This is totally okay with Addie and James as they have already called dibs on the color of his next ear molds: orange and purple.  Hmmm!!!  

Thank you again everyone for your thoughts and prayers!!  We feel so blessed and encouraged by your love and support. 

Love, The MN Juliens

Tuesday, February 04, 2014

Luke Walter

Hi everyone!! Long time, no blogging!  Our family has grown and changed a lot over the past 3 years.  We decided to start our blog up again to keep family and friends updated.

On November 28th, 2013, at 4:57am, we welcomed our 3rd child, Luke Walter Julien, into this world.  He was born 2 weeks early, weighing in at a whopping 4 lbs. 13 oz.  He was a happy, healthy little squirt, who loved the attention of his big brother and big sister.

Luke, aka, Lukey Pookey, Wally Bally Head, Big Guy (just to name a few of his nicknames), is growing rapidly and is now 2 months old, weighing in at 7 lbs. 10 oz.

At his 2 month check-up, our doctor was quite concerned with his lethargic mannerism and lack of response to any of her prodding (he had just gone down for a nap, and he wasn't waking up for anything).  She called Children's Hospital, and had us check into the ER for blood tests.

On my drive down there, I had a million emotions running through me.  I couldn't reach Stefan at work, my mom answered her phone and met me down at the ER.  Luke and I arrived at the ER at noon, and throughout the afternoon, he was checked out by 11 doctors and poked 9 times trying to get a good blood sample.  By 8pm, they didn't have a diagnosis, so they admitted him saying they thought he had Failure to Thrive.  Geez!!  I called Stefan, he packed stuff up and drove over, my mom came over to stay with kiddos, and we were at the ICC unit by 9pm. 

We ended up staying at the hospital a total of 3 days and 2 nights.  It was a blur!  Here is who Luke saw and had done to him:
  • Geneticist
  • Audiologist - ABR test
  • ENT Team
  • CT scan
  •  5 different on-call Pediatric doctors
  • Phlebotomy - another 7 pokes (never ended up getting enough blood to complete the genetic tests)

Based on the ABR test, it appears God has blessed us with a little boy who has some significant hearing loss. It appears that there are no underlying issues, such as disease or metabolic issues, which is an answer to prayer! And that all his lag in development milestones can be attributed to loss of hearing.  Stefan and I were in a state of shock and grief when we finally arrived back home with Luke late Friday night.  That weekend we felt the outpouring of love from our family, friends, and church family.  Emails flooded our accounts, phone calls, meals, we felt so incredibly loved. 

During our time of grief, God showed up (as always) and wrapped his loving arms around us.  Giving us comfort, peace, and reminding us of the wonderful blessing our little Luke is, and will be in the future.

"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Colossians 1:11

We can already see how his life and story, is touching the lives of many around us.  We know that God has a plan and a special purpose for our little Luke.  This gives us so much hope and comfort.

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." - Romans 8:28

This past week, Luke had 2 more appointments.  He met with the ophthalmologist.  We were concerned that since his hearing was impaired so might his vision.  Prayers were answered, and the doctor said that his eyes looked healthy!  Praise God!  He does have some mild ptosis (droopy eyelid, just like his brother James did as a baby).  We are going to monitor this, and check back in 3 months.

His other appointment was with the ENT doctor down at Children's.  He said his CT scan looked great, and his general shape and health of the ear is wonderful.  Luke does have a significant amount of fluid in his inner ear.  They were originally thinking of putting tubes in his ears, and that this might increase his level of hearing.  The ENT said that the fluid looks clear, and that we should just wait to see if it drains on its own.  He didn't think eliminating fluid would increase his hearing enough to make hearing aids a viable long term solution.

So... Luke is a perfect candidate for a Cochlear Implants, and he can get them as early as 8-9 months.   From Wikipedia: A Cochlear Implant, is a surgically implanted electronic device that provides a sense of sound to a person who is either deaf or severely hard of hearing.  The implant can enable sufficient hearing for understanding of speech. The quality of sound is different from natural hearing, with less sound information being received and processed by the brain. However, many patients are able to hear and understand speech and environmental sounds. Newer devices and processing-strategies allow recipients to hear better in noise, enjoy music, and even use their implant processors while swimming.

In the meantime, Luke was fitted for ear molds, and receives his hearing aids on Thursday.  Luke can hear 90 decibels and above, which puts him at severe hearing loss (see chart below).  The audiologist is hoping that with hearing aids, and us talking VERY loudly, he can hear a bit of sound.  He will not be able to decifer speech, but at least he'll be able to see our lips move or a toy, and hear a soft sound.
From wikipedia

This week, a Speech Pathologist is coming out to do an initial assessment of Luke and talk about resources available.  He will begin Speech and Language soon, and we are so lucky that this is federally funded and SP actually do home visits until children are school aged.

The road ahead still seems unclear and we know that we, as parents, and Luke have a TON of work ahead of us.  Stefan and I are nervous, but also excited to start this journey with Luke and our family.  All of us have started learning ASL, Addie being the one to pick it up the quickest (she already has around 70 signs in her repertoire).  Sign language will be our main form of communication until he is around 2 1/2 years.  Then at this point, with his Cochlear Implants, he will be able to start forming words to match his signs. 

Thank you everyone for your thoughts and prayers!  We feel so blessed by your love, and most importantly, the love that our Father gives us.  He promises to always walk along side us.  He knows what's ahead before we even get there.  It is the trust and faith in Him, that allows us to understand this change in OUR plans, is exactly what he has already planned for us and it is wonderful beyond what we could imagine.

Blessings to you all and I promise to email and update our blog as much as I can!  Love to you all!

Love, the MN Juliens