Our Chinese Butterflies

Our Chinese Butterflies

Fristoe family

Fristoe family
Our family waiting on Prudence and ?????!

Thursday, October 27, 2011

Clinic visit

Today was a very long day.  I had to get up at 6:00 am and get ready to take Hannah to her yearly cleft palate clinic visit.  I was doing really well and in the process of making Hannah some cups of milk to take with us.  I have to thicken all her fluids, so it had to be done before we left.  Hannah decided at 6:45 she wanted to get up and wouldn't stop crying, so I finally had to go and get her, because I didn't want her to wake up Aaron.  I got her dressed and ready to go.  We got out to the van and I went back into the house to get a stroller.  I was going to Sonic to get a diet coke and looked down at my van gauges and realized I need gas badly!  I ended up getting a very late start and thus hit all the rush hour traffic.   I could not drive in this mess everyday.  People are nuts, I am really surprised more people don't get killed in rush hour traffic. 


I ended up being 8 minutes late or so I thought, I got there and they told me I was early and my appointment was really at 9 am.  I go to sign her in and they said that her dad checked her in and was I sure that this was Hannah??  No, I'm not sure, I just picked her up in the parking lot!!!!!!!!!!!!  Anyway, they figured out that they checked her in, instead of a little guy named Wyatt.   Wyatt and Hannah aren't even close.  We sat around and waited for her turn.  We started by going and getting a hearing test.  Hannah has always passed, but not today.  She failed in every area, except some higher tones which are just barely in the normal range.  We redid all the test a second and time and there was no improvement.  Next we got to go and see the ENT.  She was really nice and said, "I think we need to put tubes in her ears."  I told her she had tubes and she replied Oh, I missed that and I thought this was going to be an easy case.  We end up going to the microscope room and they worked on her ears for about 45 minutes.  Hannah was so mad.  She was red, crying and burning up.  Her right tube is clogged and they tried to clear it but couldn't.  Her right one is clear, but she still isn't hearing well.  We left the ENT with a follow up visit for next week, surgery scheduled for December 7th.  At this surgery they are going to repair her larynx cleft, which should keep her from aspirating, they will check her tubes and replace, if needed and do a hearing test and decide if she needs hearing aids.  She is also on a new diet.  The following items are not suppose to be eaten after lunch:   Hot dags, ketchup, mustard, peppermint, fried foods(tater tots, french fries, chicken nuggets, etc.), any tomato products, lemonade, oranges, orange juice, chocolate, fruit punch, caffeine, tea, spicy foods.  Not sure what is left and all fast food is out.  I am going to have to call tomorrow and find out why she can't have those foods, I know she told me, but I can't remember.  I wasn't expecting any of this.

Next we saw the plastic surgeon and he said we needed to wait another year for her cleft repair, because she is so small.  I did ask him if he would take care of Clare and he agreed and said he would go ahead and schedule her surgery in 7 months, every though she isn't here yet, but that way she wouldn't have to wait a long time after she got home.  He also said he would repair her lip and palate all in the same surgery, because of her age!!

We saw a speech therapist and were told to get a new one, because Hannah cannot hear the one she has, because she has a deep voice and we need one that specializes in cleft palates and high pitch.  We saw an occupational therapist, and are now being sent to a feeding clinic to improve muscle tone.  Last, but not least we saw a nutritionalist and I was informed I needed to make sure she was drinking 40 ozs. of fluid a day.  This is going to be interesting.  She has never taken 40 ozs or anywhere near that, her entire life.  The most she has ever taken was 30 ozs. and she wasn't eating food then.  Finally we were sent home, with way more info than I could digest at one time, when I was simply planning on finding out if they would repair her cleft palate now or later.

Please pray for healing of Hannah's ears.


Suzanne

2 comments:

  1. Suzanne,You have a great amount of stuff to deal with everyday, I can't imagine how you deal with it all.Well I know how you do it, with God by your side. Your an amazing woman with a great deal of patience.God bless you. Laura Anthony

    ReplyDelete