Kayaking

My first time kayaking.  It wasn't as difficult as I thought it would be although we were on a very small, calm lake.  Olivia had been before so she gave me pointers.  We are enjoying time together before her and Alaina start school again on the 27th.  

Fairy House

Olivia made this clay fairy house at our town art center.  It turned out so cute!  

Alaina Climbing

Camping

Olivia and her friend Kate went camping in the backyard.  Olivia loved it so much she said she wanted to keep sleeping there the rest of the week. Unfortunately to cold for that.  I love that she enjoys it so much as camping with my mom and grandparents was one of the highlights of my childhood.

Happy 6th Birthday Alaina!

 We love you so much and we are so proud of you.  You rocked kindergarten and I hope that you continue to excel in everything that your heart desires.  

School Rodeo

Olivia Skating

Corinne Skating

Corinne's Skating Lesson

If You Build It, They Will Come: If you read any post here this year, please make it this one.

If You Build It, They Will Come: If you read any post here this year, please make it this one.\



-Amazing article about a college program in NC for people with special needs.  

Tea Party

Sledding

Corinne on the Snowy Trampoline

Goodbye Tonsils

Post Op- Day 1

         Goodbye tonsils and adenoids!  Alaina had a tonsillectomy and adenoidectomy yesterday and I thought I would share some facts about why we and her doctor chose to have this procedure done. 

         Clinical research shows that when kids with Down syndrome undergo a sleep study (gold standard for diagnosing sleep apnea) at least 50% of them show signs of sleep apnea, typically obstructive sleep apnea. 
This was the case for Alaina, she underwent a sleep study about a year ago which did show mild sleep apnea.  This was characterized by multiple events of decreased or no airflow for greater than 10 seconds.  Thankfully, she was maintaining good oxygen levels during these events.  Another characteristic of OSA is that the chest wall will continue to move as though the person is breathing even though there is no airflow. 

        The first line of treatment for sleep apnea in kids with DS is to have the tonsils removed because they are likely contributing to some of the obstruction.  The obstruction is believed to be caused by enlarged tonsils combined with small airways and low muscle tone of the airway.  If tonsil and adenoid removal doesn't completely remedy the situation the next treatment is CPAP (continuous positive airway pressure), although this is most commonly needed in adults as opposed to pediatric populations. 

       Another reason I was interested in having a T&A removal is because removal of the adenoids can be a solution to chronic sinusitis which Alaina is prone to.  She gets bacterial sinus infections that will improve with antibiotic therapy just to re-occur as soon as she is off of them.  As most of us know antibiotics should never be a long term solution so I've been looking at a more effective way to manage her sinusitis.

      As far as Alaina's stay went she did great!  Her ENT doctor is fairly cautious with treatment and therefore recommended an overnight stay to monitor oxygen levels while she slept.  She did fine and we were home the next morning.  I was surprised to find out that her post-op pain would be managed with Tylenol as I had heard this can be a painful recovery.  So far she doesn't appear to be in much pain and I'm continuing to medicate on a schedule for prevention of pain as this can cause dehydration due to refusal to drink and eat. 

      I want to share my thoughts regarding an overnight conversation I had with one of the hospital doctors.  He came to assess Alaina and shared with me that his little sister had DS.  He did say that his sister was doing well, but gave a comment that most DS moms are familiar with "mild facial features" in regards to Alaina.  In my opinion Alaina very obviously has DS, in addition to her multiple surgeries due to defects related to DS.  I think sometimes medical professionals think this is the correct communication with parents to make them feel better, but what made me feel the best was that I could feel the love he had for his sister by communicating with me.

        I shared with him that I'm so grateful for the amazing advancement in medical treatment for people with Down syndrome such as the T&A removal for sleep apnea.  We know through medical research the terrible effects of sleep apnea on the general population such as reduced cognition, as well as lung and heart damage.  The average lifespan of people with DS has increased from 25 y/o in 1983 ,which was shortly before I was born, to 60 y/o now.  I think much of this is due to medical interventions that are newly developed and also parents who came before me who fought for appropiate medical and therapeutic interventions for their children.  Another example is hypothyroidism, which Alaina does not currently have, but shares many of the same symptoms as children with DS and is also increased in the DS population. 

     Thanks for reading and I hope this is helpful for any parents considering T&A and also for our family living far away. Please leave a comment or email me if you have any questions.

Happy New Year!!!