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Thursday's appointments and more

Don't forget the Ipad fundraiser!!GO HERE
And here is a sneak peak of the dress auction.  All the pictures are taken, I have to list sizes and description later this week.
BOY, have we loved the great weather!!  Emmi especially, she is an outdoor nut.

Waid finally got a perscription for glasses on Thursday.  Remember the 7:45 appointment?  We did not see anyone until 8:45.....Then the doctor (along with me) wondered why the 1st Dr. didn't get the perscription one of the 4 times that Waid was under anesthesia.  His notes said he could not see because of the cataracts.  Of course the cataracts are still there, so what was the point of this new doctor looking???
She agreed with me, and I told her that I thought we had been sent on a wild goose chase, paying way too many co-pays along the way; she agreed.  She did not charge us a co-pay and just wrote a perscription for safety glasses.

Then, we went back to the office we visited on Monday, to return the toy that Waid snatched and hid in his bag.
While waiting on the elevator, the doctor from Monday walked by and asked how today's appointment
went.  I told her, and she was frustrated too.  She was not supposed to be in her office today for patients, but told us to come in, and that she would get something in the perscription better than just safety glass.  SO, this truly caring doctor, sat on the office's kitchen floor and played with Waid until she determined what to perscribe.
She said it was not as good of a reading as she would like, but better than nothing, and it would not harm his eyes.  His new glasses will be in later this week.

Avery had an 8am appointment with the cleft team.  David dropped me, Waid, and Emmi off, and then took Wes and Avery to Children's for her appointment.  My group walked over after Waid was done. 
Several things going on with Avery.  She has gone almost 6 months without tubes in her ears!!!!  When she started out with them 3 years ago, some barely stayed in 30 days, and we lost count how many times she had them.  We were told that she would always have them until age 10 or 12, and now she is tube free!
Next, genetics testing.  Two vials of blood were drawn, and she let the whole north wing know about it.
We had gone to a genetics dr. in Dec., who did not feel the need for testing.  The genetics dr at clinic felt that her delays, without a definate diagnosis, warranted testing--what I have said all along (why don't they listen to moms?)  In about 2 months, we will know if Avery has any other syndromes.

Look at Waid go!!

Avery also was scoped with a camera through the nose, to look at her throat and palate.  About a year and a half ago, she had pharyngeal surgery.  Her airway looks to be about the size of a straw.  She has sleep apnea because of it.  But the surgery still did not help her to talk.  We discovered with the scope, that the palate is not sealing off the airway during speech.  So now we know her speech, or lack thereof , is not totally related to developmental delays.

Wes and Avery are inseperable most days.

Avery's cleft doctor is stumped (his words).  Over 20 years of experience, one of the top in the nation, and he's stumped.  He can make an appliance for her to wear during the day, but take out at night so she can breathe, but he doesn't like that option.  He told us he is going to a convention in April, where Avery's case will be discussed, and hopefully a solution can be found.  This girl keeps us guessing=)

4 comments:

  1. Seems like progress is being made in both children. God bless you and David.

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  2. Janet, you are such an inspiration to me. You are not just a hearer of the Word, but such a doer. And I know it is because of your love for our Lord and for your sweet children.

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  3. That little bit of dress looks so beautiful!!!
    I’m glad that you are getting the help you need for your children. We will be walking the CL/CP journey soon. And may be the eye thing too.

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  4. Wow! You learned a lot in one day! I know that made you feel so much better and that you were pleased so see so much progress! Praise the Lord for His help and for doctors that care!

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