Neurology

More good news... the prayers are working!!!!!

We went to the neurologist yesterday, and he is pretty sure her brain is functioning the way it should be, and most of her problems are external.  He did refer us to a craniologist which we will go to in May.  The craniologist will work with the ENT to come up with a plan together.  The neurologist wants to check her agin in June to make sure she is continuing to develop age appropriately.  He did let us know that she will probably have a speech delay because of her hearing, but also because of her asymmetrical mouth, and will more than likely need therapy.  We are thrilled to know that her brain is functioning like a 6 week old.

Please continue to prayer for more answers and good news!

Brynlee's Audiology Appointment

Yesterday, we took Brynlee to the audiologist.  She does have moderate hearing loss in her left ear, and has normal hearing in her right ear.  To a mommy, that makes my heart happy that I know she can still hear my voice!  The good news, her hearing nerve for her left ear is functioning and hearing noises.  The audiologist is pretty sure the sound is not able to travel through the small ear canal that she has.  So, we have now been referred to an ENT specialist that will be able to make the decision if she will need to have an ear canal built for her or not.  They will also decide about hearing aids for her.  More than likely she will have a hearing aid sooner than later so that the nerve will continue working and hearing sounds, and it doesn't get "lazy".  Bryn was also diagnosed with Atresia/Microtia.

What is Microtia / What is Atresia?

Microtia is a congenital deformity affecting the outer ear (pinna) where the ear does not fully develop during the first trimester of pregnancy. A Microtia ear is often smaller in size, can have a peanut shaped appearance, only have a small nub or lobe present, or be completely absent at birth. Microtia is Latin for the words micro and otia, meaning “little ear.” Microtia can affect one ear (unilaterally) or both ears (bilaterally). Microtia occurs in every 1 out of 6,000 to 12,000 births. The right ear is more commonly affected. Microtia is often accompanied by Atresia.

Atresia (also known as aural atresia) is the absence or closure of the external auditory ear canal. The malformation of the middle ear bones (incus, stapes, and malleus) may be affected including the narrowing of the ear canal, known as canal stenosis. Atresia is Latin for absence of an opening.

We meet with the neurologist next week to hopefully get some more answers.

Prayer Request:

For Shaylor and I to know what will be the best thing for Brynlee as far as hearing aids, implants, etc.

That Brynlee does not have chronic ear infections (With Atresia/Microtia she is more apt to get ear infections.)

Her neurology appointment next week

Praises:

She can hear!!!!!

We have felt such a peace during all of this.  (We know it is because of all the prayers)

 

1 month

Age: 1 month

Weight: 7 pounds 11 ounces

Length: 22 inches

Size (diapers, onesies, etc.): newborn diapers and clothes, and a few 0-3 month clothing

Eyes: blue

Hair: dark brown

Sleeping: During the day you sleep for about 1-2 hours between feedings.  At night, you are up for about 4-5 hours, then will finally go to sleep between 3:00 and 5:00 and sleep for 4-5 hours.

Eating: You are nursed every 3-4 hours.  At night daddy gives you one bottle of mommy's yummy stuff, so she can get a little sleep

Milestones: gained a lot of weight!

Memorable outings: We spent a lot of time in doctor offices your first month for weight gain, and jaundice checks.  We are on the go a lot because of big brother!  You love your car seat, and will just sleep in it.

Favorite toys/activities: You love listening to your brother sing to you.  If you are crying, he comes over and starts singing and you almost immediately stop.  You also love for someone to hold you, and cuddle with you.

Words/sounds: You are cooing and it is just so precious!

Nicknames: Bryn, Bug-a-boo, Sister, Lil Miss, My Little Nemo

Funny moments: Peeing all over mom at the doctor's office, it even got on her shoes. 

Looking forward to: I don't necessarily know if we are looking forward to this, but ready to start with meeting with all of your specialist so we can see what is ahead of us.

First time to the Kids Workshop at Home Depot

Ready for your first birthday party, Evan's princess party.  (Daddy thought the picture was funny with your bow over your eyes.)

First time in your crib

Monthly picture

Loving your bunny Bubba got you

First little smirk

BIG smile

Direction

First of all, I never realized how many people would invest their time into reading our blog and praying for our family.  The words of encouragement that we get daily are helping us get through every day.  With that, I am not a professional writer and by no means plan on becoming a writer.  I really am doing this blog to keep everyone up to date as best I can with what is going on with our family.

I am including her stats so we can remember them in the future.  6 pounds 15 ounces, 10th percentile, 21 inches, 60th percentile.  Doctor says she is going to have bright blue eyes, dark hair, and we are going to be in trouble!  

Now, the update and answers we were hoping for.  Yesterday, we took Bryn to her 2 week check-up.  Her pediatrician looked over her and told us the news we wanted to hear... "Your child is healthy!" PTL!!!!  With that we do have a long road ahead of us.  She filled us in about what all the audiologist will do, and basically it will be a really long, more extensive hearing test.  She said be prepared because it will take awhile.  Our pedi, Dr. Hull, did say her ear canal is very, very narrow.  She said she can't even tell if she has an ear drum or not, and that is why she did not pass her hearing test.  Once we go to the audiologist, they will more than likely refer us to an ENT who will actually build an ear canal for Brynlee, and she will be able to hear without any problems.  The medical world has come so far!  If she does not have an ear drum, then we will have to cross that road when we get to it.  Dr. Hull is also referring us to a neurologist.  She thinks that she born without a muscle in her face, but the only way to really know what is going on is to do an MRI, so that is where the neurologist comes in.  They are trying to get us in, in the next couple of weeks, so please pray that they will have an appointment really soon for us.  Dr. Hull never said anything about her hip, so I asked.  She was a bit surprised to hear that they had told us that she had a click in her hip.  She didn't feel it, but wanted to check again, and did a pretty intense hip check.  She told us, that Bryn has really strong hips!  She did say though that we need to keep watching it and checking it.  If she does have a click in her hip, and we catch it before she is 8 weeks old, she will have to wear a harness.  If we miss it, she will end up having to have surgery to correct it.  Everything else is pretty much put on the back burner for now.  Our doctor is wanting to focus on the main issues that we need/can take care of right now.  Everything else is something to keep watching to see if she outgrows or is something we need to focus on in a few months.

Once again, we are so appreciative of the love and prayers that our surrounding our family.

Please pray:
*that we get into the neurologist in the next couple of week
*that when we go to the audiologist that they will see an ear drum
*for the doctors that are all tending to our daughter
*that Shaylor and I have patience and know what we need to do as her parents
*for Kysen to continue adjusting to this new life, and that he has an understanding if we are having to tend to Brynlee more because of her medical issues.