Wednesday, April 7, 2010

Down Syndrome Clinic

Alayna had her annual down syndrome clinic check up this morning. A super huge thanks to Liz for taking Aidan at 7:15 and making sure he got to school so we could get downtown by 8am. (He was so excited to have a play date before school that he was up at 5:55, hope he made it through the school day ok...)

Alayna was her normal happy go lucky, social self and entertained the 7 different "ologists" that came in to check on her. We were pleased to learn that she has put on 7 pounds and 6 inches in the year.

She got another clean bill of health from the doctors and the she is doing terrific from the rest of the staff.

My only concern for today was in the last two weeks I have noticed twice that Alayna has misunderstood what I said, she thought I said head for bread, for example. I definitely wanted her ears checked, which is part of this clinic visit anyway.

First we tried the sound booth but, after being in a small exam room with Jason & I for 2 hours prior she was a little less than participatory (no crying or anything just didn't look when the sound went off).
Even when the audiologist spoke into the microphone REALLY loud Alayna would sometimes ignore her. We all knew she could hear it just chose not to look toward the sound (stinker). So needless to say we didn't get a good reading. She tried a tympanometer and it read flat in both ears. So she did the otoacoustic emissions test (they put a small probe in her ear, there are a number of clicking sounds that are inaudible that go in and they register whether or not the vibration comes back out) she failed this test too.

The nurse practitioner told us that Alayna's ears were really filled with wax in the canal. As she hasn't had any hearing issues or ear infections to date, they and we are hopeful that the poor readings today are just from the wax buildup. We will get some wax removal drops and retest her with a tympanometer in one month. If after that she still doesn't pass we will go see an ENT.

After our clinic visit we always have to go to the dreaded lab for blood work. If you remember last year's visit I nearly came unglued at the lady digging around in Alayna's arm for a vein, so this year I requested upfront someone with experience in drawing on kids with down syndrome. YAHOO for the gal we had today she searched both arms and decided the right one would be better and lo and behold a vein on the FIRST attempt. After 4 vials of blood and very little tears (she was more upset about being held tightly than the needle in her arm) we were out of there.

We will have a full report in two weeks of their findings but, if any of the blood work comes back out of line they will call us by the end of the week so we can repeat it at our pediatrician's office when we go in for her 18 month check up.

Instead of going back to the ds clinic next spring, since medically she has no outstanding issues we will push it back 18 months to just after Alayna turns 3 so they can do the spinal x rays they do on kids with ds at that time.

We were also pleased to hear that the doctor that heads up the DS clinic is also in charge of the residents so she is having them spend some time in the clinic so they can expand their views of kids with down syndrome. Hopefully this will help these doctors provide positive, accurate and individual information to families with a new ds diagnosis.


RK said...

Sounds like a great visit, as those longs days go. :o) Braska's never passed a hearing test, especially tympanograms, since the NICU. But we know she can hear, since she can speak all her sounds appropriately. She doesn't want to cooperate with the sound booth tests either. She's had enough that she knows where the little elephant is supposed to light up, so she just watches for it regardless of what they say and when. Miss Difficult! But as an FYI...I know many moms of littles with DS who also report that all tympanograms have been flat. Those teensy ear canals mess with the air flow that the test requires. Braska's hearing has been affected by the fluid in her ears of the past few months, but prior to that, we always saw the ENT first for a good thorough cleaning before we had the hearing test. B's a waxy ear girl too. :o)

I hope it's just the wax and she continues on her healthy streak!! What a blessing!

ch said...

We can't believe it's been a year already! I'm surprised they didn't try to find an excuse to have her back in before age 3...I'm sure they were all in love with her by the time she left today!

Way to go, LaynaLoo! You are such a star!

Lacey said...

those darn ears, always a bugger! We've never been to our DS clinic. I think because he has all of his specialists already!

Beverly said...

happy all is well. love that new header photo

Sara Bell said...

That's so awesome! Glad to see that she is doing so well and God bless you with her little OUTGOING personality! I have one on my hands too! (I look at it as a good way to stay thin!) Take care and have a great Thursday!

Kim said...

Yea, Alayna! Let us know if you get to the point where you need a good ENT. We absolutely LOVE ours. She is the best in the biz!


K D said...

Sounds like it went great!

Yay for Alayna showing off! :) and Yay for her being stubborn at the hearing test. very typical toddler behavior! :)

FYI - It took forever (months) to get into an ENT at Mercy this past fall. So you might go ahead and schedule if that is where you would go and cancel later.

Also IDC has a tympanometer. Therese checked Kelsey a couple of times last fall.

Melissa said...

I really wish we had a clinic like this in our state. The only one I can find is for adults.... said...

What a great time! God bless!