Recovering well

Surgery went well for both girls.

Alayna just had tubes placed and Dariya had tubes and an adenoidectomy.  Alayna came out of surgery second and was quick to wake up and ask about Dariya.  Dariya was still sleeping in the bed next to Alayna and was very groggy after anesthesia.

Late Monday night Dariya had a rash on her face and was breathing like she was Darth Vadar.  Not sure what she was allergic to but, thankfully after rest, benedryl and an advil she was back to her normal self.

Overall they have had an easy recovery and are definitely hearing better.  They both rang in the New Year at 6pm  (English time Zone) and were too tired to party any longer.

Today Alayna decided their doll's had birthdays so we had to have a tea party to celebrate.

Hoping they get rested and back to 100% before school starts again on Tuesday.

Christmas in pictures

We hope your Christmas was as blessed.

The girls are having ear tube surgery on Monday morning the 29th. We would love prayers for an easy surgery, quick recovery and repaired hearing for both girls.  Thanks!

I can hear, I can cry...

I take the girls to the ENT every 6 months to keep current on their hearing tests and to check their tube placement.  Mondayy was the lucky day where we had to be out of the house at 8 for the doctor.  Still questioning why I make appointments so doggone early when I can hardly drag myself out of bed these days...

Alayna was first up as she is always the easier of the two when it comes to anyone touching or checking them out.  Alayna did the sound booth test and her hearing was declared perfect.  Her tubes are working their way out and the doctor didn't think either one was working at this point so with a perfect hearing test we were pretty excited.  We won't schedule more tubes unless she starts having issues.

Then it came to my sweet Dariya.  This girl has come a LONG way in being tolerant of doctors and such but, she still hates to have those things put in her ears.  She allowed the tech to look in her ears.  One tube is working it's way out.  She played the little where is your nose, eyes, feet etc game with the tech.

Then for the sound booth test and even with me kneeling in front of her she began to cry.  She wasn't crying hard or too loud but, it was loud enough that she couldn't hear the tech tell her the directions (where is your eyes).  Dariya pointed to her nose correctly once and just sat and wept for a little while and the tech ruled it yet another non passable test.  UGH.  I swear Dariya will be 20 when we finally get an accurate hearing test on her.  I know Dariya can hear at a whisper so I am not too concerned about her hearing at this point.

Although I do have to remember how far she has come.  She doesn't mind trying on shoes, going to the pediatrician or even fuss too much for shots or blood draws anymore.

We will follow up in 4 months this time as the doctor was pretty sure their tubes would be out by then.  Maybe then I will take backup (daddy) and we can get a good hearing test.

Wish us luck.

The girls dance troop performed at our town's weekend celebration.  

Do you hear what I hear?

Today the girls had their biannual ENT appointment to check their tubes and hearing.  Hey, we met our deductible why not cram in every ologist I can think of before the end of the month?

We haven't been so successful in getting a good hearing test yet on Dariya so I was more than anxious to hold her down get it done.

Thankfully the girls were angelic!  Alayna was on her game for sure.  We stopped at the lab and had her thyroid labs completed.  She never winced or cried just sang the girls jingle bells while they worked.

Quick dash down the hall to ENT and we were whisked away into an exam room in no time.  Thankfully with iPad in tow and a little Sesame Street to keep them occupied the girls were very good.  Alayna went first and had a bunch of wax they cleaned out and had a good hearing screening plus her tubes are still in.

Then I dreaded having to get the Ukrainian Tasmanian devil into the chair.  To my surprise she only grumbled a little bit then stopped.  She let them put the little things in her ears and sat quietly (I guess little sister's role modeling paid off).  She grumbled a few times and reached to pull them out once but otherwise was fabulous!  A far cry from the drama that ensued 6 month ago when we went to the audiologist.  She had some wax build up (she did throw a bit of a fit for the wax cleaning but WAAAAY better than normal), tubes looked good and her hearing was normal on the right and the stats looked slightly diminished on the left ear but nothing to be alarmed about.  We won't be able to get accurate and specific levels until she can wear the headphones and sit in the booth which might be a year or so away so until then we will take what victories we can get.

Afterwards we hunted down our favorite UPS man to show off our super cool Santa band aid (Alayna) then hurried home for ice cream with sprinkles to celebrate the day!

WOOT WOOT!  

ENT follow up

This morning Dariya had her 2 week follow up at the ENT's office to check her tube placement and to do another hearing screening.

We have noticed a dramatic change in Dariya's hearing.  She can hear at a whisper level which prior to surgery she wouldn't have responded.  So, I was so ready for the "all clear" and her hearing is great news but, didn't really get that.

She wasn't particularly a happy patient this morning as we left for the doctor's office at the same time Alayna was boarding the bus for preschool.  Oh my, Tasmanian devil came out for sure.  But, once on the road she was ok.  However, she wouldn't sit still and allow the audiologist to do all the testing that needed to be done so we aren't super sure of the validity of today's testing.

We got good readings from her right ear but, her left ear is still showing some hearing loss (hmm maybe all those years with fluid sitting behind her eardrums, you think?)  They checked her tubes and they look clear.  I was so hoping for a large amount of wax to be the problem but, it doesn't appear to be.

We will follow up again in 3 months to hopefully get accurate readings then we will go from there as to what to do next.

If you have a child with down syndrome, I can't stress enough to have their hearing checked regularly (at least every 6 months).  Alayna's ears were fine and she had no fluid behind her ear drums for the first 18 months then all of a sudden fluid appeared and stayed which limited her hearing tremendously.  Once she had tubes placed her hearing was back to normal and her language was again on the increase.

Fun on the farm and ENT appointment

On Tuesday we went to Deanna Rose farmstead and enjoyed a beautiful, cool, summer day.

Now that Alayna is signing and making the sounds for many animals I could tell that she really enjoyed seeing all these farm animals.

She loved petting the calves and watching Aidan feed the goats but, her favorite animal was the chickens. She giggled as she watched them scratch and chase each other around and was saying bak, bak, bak.


Here is a little clip of her at the end of our visit (her bak, baks weren't as clear as they were early on.)

This morning Alayna had her ENT appointment to follow up on her flat tympanograms from the ds clinic in April and follow ups with our pediatrician and another audiologist in May.

Thankfully her eardrums looked clear, although the doctor had to clean some wax out of both ears. Her hearing registered today in the normal ranges but her tympanograms were still more flat than the doctor would like.

We have a follow up appointment with her in 6 weeks to recheck the movement of Alayna's eardrums and hearing. If it still isn't perfect Alayna will then be scheduled for tubes.

My only new bit of information from today's visit was that Alayna's tonsils were huge. The doctor wasn't concerned and wasn't suggesting a tonsillectomy or anything drastic right now but we will definitely be keeping an eye on them to make sure they aren't impacting her breathing etc.