Frustrations

I think after finding out that your child has Down syndrome, you are presented with the long list of issues your child may or may not have throughout their life.  To say that list is overwhelming and depressing is an absolute understatement.  It can raise your anxiety level higher than ever and it can make you hypersensitive to all symptoms, behaviors, etc.  It can cause sleepless nights and thoughts raising through your head during the day.  Most of the time, you can focus and put the thoughts and worries in the back of your mind to worry about another day...or when it is necessary.  Hailey has seen more doctors and has had more doctor's appointments in her 11 months and 2 weeks than my oldest has had in 8 1/2 years.  (Yes, I am extremely blessed with an extremely healthy 8 year old...yes, I thank God for that daily).  Last week, we had ANOTHER appointment with the audiologist.  We are still trying to determine if she has any hearing loss, what she can hear, what she can't hear, etc.  It is a frustrating test...I've heard from so many moms that agree.  Hailey is not easily entertained with random noises...unless it is music or the sound of voices.  The noises they use during these hearing tests are very non-entertaining.  She would much rather play with the audiologist sitting across from her or reach for the bubbles that she is blowing.  So...end result...inconclusive.  This makes #3.  Ughhhhhhh.....It is frustrating....it makes me worry....it causes me anxiety.  What is she hearing?  What is she not hearing?  What impact will this have on her development and learning?

The good news about her appointment was there was no (zero) fluid in her ears....this is a first!  I actually cried when she told me this.  The bad news is the next step is a sedated ABR.  An auditory brainstem response (ABR) is a physiological measure of the brainstem's response to sound. It tests the integrity of the hearing system from the ear to the brainstem. The test is performed by placing four to five electrodes on the infant's head, after which a variety of sounds is presented to the infant through small earphones. As the hearing nerve fires, the sound stimulus travels up to the brain. This electrical activity generated by the nerve can be recorded by the electrodes and is represented as waveforms on a computer screen. The audiologist can then present different loudness levels of each sound and determine the softest levels at which the infant can hear.  I'm not comfortable to have Hailey sedated again...she has been sedated for a couple of echos and then also for her surgery.  Luckily, this is just a "twilight" sedation and it doesn't last long...basically like her taking a nap.  Hailey has a follow up with her cardiologist later this month which will require sedation.  Fortunately, we were able to do some rearranging of her appointment...changing locations...changing times...days...etc, but we were able to pull it off.  We are having Hailey's ABR done right after her echo.  We do have to keep our fingers crossed that she stays asleep long enough for both tests.  I'm praying very hard.  I would love to have a baseline of her hearing.  We know she passed her newborn screening but I would feel better knowing whether or not there is any loss now.  Sooo....poor little monkey will have to fast for 6 hours prior to her echo (at 2 p.m....talk about a miserable day) and we will have her echo and hopefully her ABR both completed the day after her birthday.

Hailey seems to like her new blanket.

Love seeing them together!

Found the candy sticks for Hailey's birthday

Ready to go for a Sunday stroll

Let's go mom!

Might as well go to sleep if I don't get a slushy with the boys!

Hat head and wind-blown rosy cheeks