Monday, July 30, 2012
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
Sunday, July 29, 2012
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.
Saturday, July 28, 2012
Goodnight iPad!
l 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!
Friday, July 27, 2012
Here Comes the Sun!
Wednesday, July 18, 2012
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.
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.
Sunday, July 1, 2012
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.
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.