Monday, September 5, 2011

Goodbye Summer, Hello Fall!

Fall started with a cold front...ha-ha, we left the record heat of 106 to have low-mid 90's this long weekend, but honestly it DOES feel cooler!!!  Not ready to break out the fall clothes anytime soon, but today is a good day to reflect on the summer!  It has been a busy one, long gone are the "lazy, hazy, days of summer," I find myself a bit reflective wondering how maybe next summer we can capture those? It was a summer of baseball, theater (Madeline was in Wizard of Oz and summer plays, Annie and Willy Wonka), gymnastics, sleep away from home church camp (Mallory for the first time), and Parker made so many gains.  He turned 2 end of May, has now been walking for 7 months (he runs everywhere) and speech continues to come along(not nearly fast enough for me, but I'm working on that).  He never slows unless he is sleeping and we are all thankful he still takes a nap at this point!  Last week at therapy he shocked the OT, my mom was packing up, he grabbed the bag, and said "eat banana."  The proceeded to get the banana out and eat it.  We take this speech for granted, she was so thrilled. Not only was it a couplet, it was used at the proper time and in proper form, go figure this is a big deal?  The other thing he continues to do is know how to follow instruction, we tell him to "throw it in the trash," he goes to throw it away.  Unfortunately he likes to "throw it in trash," so better watch what is laying around (if it doesn't go there it goes in toilet to be flushed). He loves to blow bubbles and blow on his flute (SJR would be proud!) He will go to the back door, say "bubbles" and out we go.  He can use the stick to dip and blow no help needed. he has watched the girls hula hoop and loves to practice hooping himself. He continues to have excellent fine motor and feeding skills. Can use a fork and spoon to self feed (although messy) no issues and is coloring well by himself.  He can strap and unstrap himself in his carseat and highchair (not always the best skill for a 2 yr old in a moving vehicle). His new fascination is the door handle and the power window, good thing we have child locks!  He started preschool last week at our church preschool where all our other kids go (see my earlier post) and the other kids are almost a month into the new school year.  Having a 7th, 4th, and 2nd grader keeps my evening hours busy, homework takes a schedule as do keeping up with activities.  Not much time left to update the blog I'm afraid.  I do know this without certainty, our life has purpose, we have confidence in what we are doing to help Parker(and all the kids) succeed and it is working!  Medically speaking he is doing really well, no issues to speak of, his growth hormone results came back (he failed miserably, but we already knew that) growth hormone treatment started 11 days ago and he's already grown 1 inch!  He's physically strong, continues to be so healthy, no issues with sleep apnea or stomach problems (no ear infections, colds, etc..) and we are so grateful for God's goodness.  All his Drs are always amazed at his progress.  This is no easy task with his supplement, therapy schedule and neurodevelopmental plan for at home (aside from the countless Dr appts and other activities), but amazingly it seems routine.  I remember when we first started and it all seemed so overwhelming, not so anymore.  Guess one adjusts and when one sees results it becomes second nature.  Parker had his first haircut, amazingly as sparse as his hair is it has finally grown and needed a trim especially around the sides and back of neck. Sorry i missed the pictures of that, 4th child I'm afraid...He will start Little gym this week (one more place to run him ragged to try to tire him out, LOL) and who knows what else we will find to take part in.  Life is full, God is good, and we feel blessed beyond measure!  Some favorite pics from our summer that flew by!  XO

Sunday, September 4, 2011

World Experts Meet in Cambridge to Discuss Treatments for Down Syndrome

For those of you that aren't aware, another fantastic opportunity to gather and hear the leaders in the field, I can't make it to Cambridge, but I am so excited for this opportunity. We expect great things from this symposium, if you are interested and need details email me and I can put you in contact with the host.

World Experts Meet in Cambridge to Discuss Treatments for Down Syndrome
The treatability of Down Syndrome is gaining evidence and support, but remains the "holy grail" for parents and doctors. A rare gathering of expert scientists will plan the next stage in human treatments for Down syndrome. The wider context of the impact on people with Alzheimer's with be discussed.
London, United Kingdom, September 01, 2011 --( Rarely are such people all in the same room together, but September 17th sees the meeting of truly great minds in Cambridge at the Welcome Genome Campus. The subject they'll be discussing? Down syndrome treatments.
There are at least 30,000 children and adults with Down Syndrome (DS) in the UK and about 700 new babies every year. For years it has been thought that nothing can been done to help this group of people who face difficulties with learning and memory as well as increased risk of physical problems like congenital heart disease as a result of inheriting an extra copy of chromosome 21.
What has felt impossible by most has become a reality for scientists at the cutting edge of understanding genes and their interplay on the developing brain. "Let's define the genes that are responsible...and let's treat those genes," Dr William Mobley, Professor and Chair of the Department of Neurology at Stanford University, has recently said. He adds that hopefully "...there are two or three different targets that are very treatable."
The wider hope is that it will help everyone who develops Alzheimer's Disease, as all people with DS show brain changes of Alzheimer's.
The conference will be opened by Madam Jerome Lejeune, wife of the late Prof. Jerome Lejeune who dedicated his life to the discovery of a cure for Down Syndrome. His work continues at the Foundation Jerome Lejeune in Paris, with the support Dr. Mobley will be chairing the day and the aim of the gathering will be creation of international research alliances to speed this life changing work.
The conference has been organised by a UK charity, the Downs Syndrome Research Foundation UK, founded to get DS up the agenda for the researchers and the Government. Dr Elliott, the chair of the DSRF, concludes "We are at a crucial moment in the field and possibilities for the future are hopeful. Join us and see why."

Friday, September 2, 2011

Parker's First day of School!

Yesterday was Parker's first day at school. He's going to our church preschool where all 3 of our other kids went. He's starting earlier than they did, but we decided 2 days a week would be good for him and Grandma needs a few hours to herself!  Parker is running everywhere (as evidenced by blurry pics), loving and living life to its fullest.  No tears were shed yesterday as he went to class, for some reason I was slightly apprehensive about this decision, but God always delivers even in the smallest of ways!  We made a big decision to keep Parker with typical peers rather than send him to a segregated school for kids w/DS.  I have had peace since we made our decision, but had a few moments of creeping doubt until school started today.  His teacher has a 21 year old brother with DS, no, we had NO idea!!  She made the point to mention that Parker would not be treated any differently than the "typical" kids, what a relief!  The Spanish teacher at preschool also has a son with DS, funny, in the years we've spent at the school that never came up.  God truly orchestrates things long before our knowledge.  We are overdue for an update on things, but I'm running late today, so pictures will have to suffice.  Full disclosure here, these pictures are from the end of school day, as you can see Parker is a typical boy, a "dirt magnet," but such a cute one if I say so myself!  Love to all!

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