Praising God!

Just wanted to update on Eliana's appointment today with the ENT.  Just to update those that may not remember, Eliana failed a hearing test as a newborn in the NICU.  We went back a week later to try again and she failed then too.  We didn't follow up for awhile as we were just overwhelmed dealing with a baby in heart failure.  Heart failure just pushed everything else off of the "to-do" list.

After her heart surgery, we had another test done.  Another failure.  At that point, they began talking with me about possible hearing loss in one ear.  The right ear has always passed and tested fine.  After this appointment (with an audiologist), I immediately set up an appointment with an ENT for further testing.  This appt was in early May and once again, Eliana failed in her left ear.  At that point the ENT wanted to wait for a couple more months.  It appeared that there was some fluid in her ear that may have been causing problems.  He said if she was still failing the test in a couple of months, that she would probably need to have tubes put in her ears.

Fast forward to today.  I have been praying for clear test results.  If there are problems, I wanted them recognized so that they could be treated.  Of course I was also praying that her hearing would be fine.  We were seen shortly after arriving by an audiologist.  She was glad to see that Eliana was sleeping as she thought the test would go better. 

We talked for a few moments before she started the test.  She asked how things had been going and I told her that it had been a little tough - and that she had g-tube surgery just 2 weeks ago.  She began the test in Eliana's left ear - the one that has consistently failed.  She looked over at the test screen and then said to me "She is passing".  My eyes just welled up with tears.  Tears of relief.  Tears of happiness.  Tears of thankfulness.  Praise God was one of my first thoughts! 

I continued to hold my breathe waiting for the test to finish, wondering if things could change.  She passed!  She can hear just fine!!!  Oh, I'm in tears again thinking about it.  I'm so very thankful that she has been spared this trial.  That all of us have been spared this trial.  Oh, my baby can hear!  I had told someone that I thought she seemed to hear just fine, but was told that I might have just missed the problems she was having.  I'm so thankful that isn't the case. 

The right ear was tested and as usual was fine.  After this test (OAE) she did another test to see if there was fluid in the ears and Eliana tested fine on that one too.  She gave me copies of the test results and seeing "normal" in so many places was a sweet thing!  I remember one other time when the word "normal" was a sweet thing.  It was during my level 2 ultrasound with Daniel.  I didn't want to know if there was anything wrong, but it was still a great relief to read "normal". 

We then waited for about an hour to see the ENT.  I started reading a book (Quaker Summer) which was nice treat as I don't have nearly enough time to read for pleasure.   When Eliana was awake, I read some books to her as well.  Having gotten such great news, I really didn't mind the wait.

The ENT looked in her ears and thought things looked great.  He commented that the size of her ear canals was good (it is typically smaller in children with Down syndrome which can create problems).  He also said that though he couldn't promise it, that having made it to 7.5 months with no hearing issues was a good sign that she may not have them.  We will return in 7 months for a follow-up just to be sure.

I'm so thankful for this answer to prayer.  I feel like we have been given a break.  Thank you God!

Still having problems with her feeding tube coming open - and leaking.  It happened 4 times today.  I've tried wrapping various things around it and thus far nothing has helped.  I'm hoping our ped may  have some ideas.

Time for bed.  Tomorrow is a busy day.

Thank you for your prayers.

With love,

Leslie

 

Our week - at least what I know of it

Monday - Well, we are trying to start back to school.  I'm not sure this is the best week since we have soooo many appts, but I hate to wait for a "good time" as I'm not sure when that will be.  We'll just do the best that we can.  We typically  make a big deal of our first day - and are putting that off until later in the week.  We have a breakfast out and talk about our upcoming year.  Lots of photos and fun.

Today has been ... well, so fun mixed in with not so much fun.  The children have been helpful and also whiny.  So much whining makes me grumpy.  (I know - I should deal with it better.)  Not a great start for anyone.  Part of what is frustrating me is that Eliana's button keeps coming open - and leaking all over everything!!!  She has had on 4 outfits so far today.  She's gotten a quilt, a rug, and me.  I've tried keeping it closed with a soft tube around her middle (doesn't help) and a band-aid (helps but really irritates her skin).  This has really become a problem in the last 24 hours.

Eliana has an appointment with the ENT (ear, nose & throat) doctor today.  I'm hoping that they will get a clear and accurate reading on her hearing test.  I'm also hoping that her hearing is fine.  I'd love to skip the getting tubes for now even though it is a minor surgery compared to what she  has already been through.

Tuesday - We have a visit with our ped.  I'm looking forward to talking with her about Eliana's g-tube, her feeding amounts and the problems we are having.  I'm so glad she is back!  We have a long appt time as she schedules us at the end of the morning or afternoon slot so that nobody is after us.

We will also be seeing the feeding therapist.  I've cut back on Eliana's feeding and it will be interesting to see if it has affected her weight at all.  She has had some good feedings - an ounce is now a good feed - in the last couple of days.

Wednesday - Physical therapy.  I enjoy this because it is usually a time of encouragment.  I found out last week that our PT has co-written a therapy book/assessment tool for use with children.  Wow!  I always hear how great she is - and to know that she has all of this background is even more impressive.  I'm thankful to have someone with such experience helping Eliana.

Thursday - We visit the Down syndrome clinic.  I'll be meeting with a doctor and a genetic counselor.  She is also scheduled to have bloodwork done.  May choose to do that at the ped instead.  I'm not sure.  It won't be a terribly long day since we already have an eye dr, ENT, cardiologist, physical therapist and occupational therapist.  Otherwise all of those folks could be on the list as well.

Friday - Nothing so far.  I think that is what I'm going to want for that day too - nothing!!!

I would love prayers for the following things:

*Leakage - If there is a way for the "flap" to close so that she doesn't leak so much and so often it would be great.  This only happens if the button gets opened.  It happens after a feed, before a feed and whenever it just comes open.

*Hearing - An accurate test.  I'm also praying that her hearing is fine!

*Button - I would love prayers that either it would stop opening or that we could find a way to help keep it closed.  I'm really at a loss as to what to do here. 

*All of our appts would go well.  That I would remember to ask all the questions that I have and that I would get the information that we need.

*Schooling - That this would be the start of a fun year.  We are spending some time this week making "All about Me" books.  I think it will be a lot of fun to have these as keepsakes.

Need to go as it is about time to leave for our appointment.  More as I'm able to post.

Love,

Leslie