A Funny Story

I had a totally different subject in mind tonight but instead, I have to share a funny story about K.  My girls help out with a few chores around the house. Tonight, I called K's sister to come upstairs.  I was wanting to ask her to please take out the garbage but all I did was say her name.  I must have been using my "it's time to do a job voice" because when T reached the top of the stairs, K started on her list of jobs before I got a chance.  "T, you need to take out the garbage, feed the cats, clean your bedroom, look after your bearded dragon & do the dishwasher"  Wow - now that's quite a list! I think she might get a job in management one day! LOL

A Trip to the Science Center

We went to a science center on a recent trip.  Out oldest 2 met up with a couple of friends & did their own thing so my youngest 2 girls & I were on our own to explore. We had a great time!  Here are a few pictures of the highlights of our day.

This was a wind tunnel that blew various types & sizes of cloth up & out the top. It was a favorite with all the kids & K had a blast putting pieces of cloth in & trying to catch them as they blew out the top!

This area had elastic band, long poles & pieces of cloth to make various structures.

This is K & KJ`s being shadow monsters!

Both girls enjoyed the light table.

K was a little short for the climbing wall but KJ enjoyed it.

 

"Look at me mom!  I made it to the top!"

KJ made some of these little creatures.  K made what she entitled "a fish" but I forgot to take a picture.

This is the coolest instrument.  When you touch the piano keys bubbles of different colours come out of each of the tubes.

 

Here is quick video on another instrument - those are drums that the ball is hitting.

Goodnight iPad!

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 We found this book in the gift shop at the science center the other day - & yes I am working on a post about our trip:). This book is so funny - & perfect for my Little Miss technology!  I was just telling a friend about it this evening when K wandered downstairs & although she was supposed to be sleeping, right on cue she requested "her" iPad.  It actually is shared by all 4 of my girls & although K is pretty good about sharing it, she insists the iPad is hers. I didn't buy the book that day.  I was in a rush & just didn't bother but I did find this YouTube video. I'm going to have to find a copy though!

 

Here Comes the Sun!

K has only started to enjoy drawing in the last 6 months or so.  She still prefers to "freestyle" but occasionally draws something that is more easily recognized.  It's nice to see that preference changing as she gets closer to school age.

Because She Has Down Syndrome?????? A Medical Vent...........

When K was about 18 months old, I mentioned to her Dr.  that she had started to wake up a lot during the night & that her breathing could always be heard - not exactly snoring, but we could always hear her. She had never had any problems with tonsillitis, ear infections or anything like that.  Her Dr. recommended a level two sleep study which indicated (moderate or mild - I can't remember) sleep apnea.

 K's next appointment was to an ENT.  For the purpose of this story, lets just call him Dr. Scalpel Happy. Knowing that we were hoping to avoid a surgery if possible, Dr. Scalpel Happy suggested that K's apneas could be caused by reflux so he wrote her a prescription for Prevacid. I really don't think he expected it to make much  difference & neither did I.  I decided to give it a try because although I try to avoid medications when possible, K obviously was not sleeping well & a reflux medication was probably preferable to surgery.   Within one week of being on reflux medication, K slept through the entire night for the first time in her life & was suddenly breathing so quietly that I found myself getting up numerous times in the night to make sure she was still breathing.

Upon returning to Dr. Scalpel Happy's office a few weeks later, we reported the dramatic change it had made in our daughter's sleep  habits.  I fully expected him to drop the surgery idea entirely, so I was dumbfounded when he replied, "That's great, but I think we need to remove her tonsils & adenoids anyways because she has Down syndrome."  I have no problem with a surgery that truly is necessary, but "because she  has Down syndrome."?  I have never heard of an extra chromosome being an indicator for a tonsillectomy!!!!!!!!  I asked for more time to think about it, & in the meantime, I contacted a local company that does overnight pulse oximetry studies & arranged a study on my own.  The results did not indicate any signs of sleep apnea while she was taking the Prevacid.  Dr. Scalpel Happy was furious that I had initiated my own study, but had to agree, especially when he ordered a 2nd study that also proved normal.  K was able to avoid an unnecessary surgery & although I'm not very popular in Dr. Scalpel Happy's department, it was well worth it :)!

K was also started seeing a new pulmologist during all of this. During her first visit, she asked for some history including the above story & when I repeated the Dr. Scalpel Happy's comment, she rolled her eyes.  I wanted to jump over the desk & hug her! I knew I had found a medical professional that I would be able to work with:).  She still sees K today & has always been wonderful to work with.  I appreciate her common sense  & down to earth attitude. It can be tough to go against the "experts" & I was so glad to find an expert who agreed with what my mommy's instincts had been telling me all along. In the meantime, we no longer see that ENT that a good friend & I now refer to only as "Dr. Scalpel Happy"  Both of our daughters started seeing a new ENT shortly after we both had very different but equally negative experiences with Dr. Scalpel Happy - hers involved his recommendation to do a sedated biopsy including a multi day hospital stay when a swallow study would give the same results!!!!!  Really, is that reasonable???????? 

UPDATE:  I wrote this a couple of years ago & K still sleeps very well & does not snore unless she has a bad cold. She was released from the new ENT's care quite a while ago. K will be having another level 1 study done later this summer  to because her pulmologist wants to be sure that everything is still going well.  She will likely release K from her care after this sleep study. Of course I do plan to have a sleep study done periodically. Sleep apnea can cause a lot of problems & it is something that we need to be aware of & treat when necessary.

Down Syndrome Options

This is an awesome new website. It is in the beginning stages but watch for a lot more wonderful things to come!

http://downsyndromeoptions.org/

If the link still doesn't work, it can easily be googled (sorry). It was the first on the list when I googled it.