Friday, November 30, 2012

The Great Television Turnoff

Imagine my surprise when Peyton informs me he wants an iPhone for Christmas. Me too, kid. He's 7. What the heck does he need an iPhone for? The crazy part is, it's not an outrageous request. I'm sure there are plenty of kids out there with them.  It's a sign of the times. iPhones, ipods, iPads, cell phones, DVDs, and dvr's. It got me thinking how much technology is intertwined in our daily lives.  I'm sure all of us have seen or been that family out eating at a table where everyone has their cell phones out.   When did life become so impersonal.  Brian and I spend our "quality" time each night on the couch watching our favorite shows.  What if we turned the tv off? Christmas is a time for family and memories.  That is why I came up with the idea that the 25 days of Christmas should also be 25 days tv free.  A social experiment of sorts.  Surprisingly, Brian agreed and thought it was a good idea. So, starting tomorrow, December 1st, our tv will be turned off. Wish us luck!





Thursday, November 29, 2012

Home

Paperwork, paperwork, and more paperwork.  That is the name of the game right now.  The case worker is coming next week for our first home visit.  We are also working on a portfolio of our family for birth moms to view.  They encouraged us to add a video or dvd for them to get a better feel for our family so I put together a slideshow.  Here is the finished product:

video

Saturday, November 17, 2012

Surprises for everyone!

November 17.
This post is going to start off a little random but don't worry, we'll get there, I promise.  20 months ago, our lives were completely turned upside down.  Not just the "SURPRISE, parenthood is here" kind of upside down, but "SURPRISE, your baby has a chromosome deletion and his life expectancy and abilities are questionable".  We went through the normal process of sadness and grief and sleepness nights petrified of our future.  We trudged forward and one day we looked around at our life and realized we were not only living our life but actually loving it.  Like, a pinch me is this awesome life really all mine?  I won't be able to explain in words how much Tyler has changed our lives for the better.  I want to be a better mom, wife, woman because of this kid.  There is depth and a purpose in my life.  I have gained so many relationships with awesome people.  My faith and relationship with God has reached a whole new level.  There is a closeness with my husband that brings a smile to face just typing this.  November 17.  National Adoption Day.  The day we announce and invite you along on this new journey.  Our journey to adopting another little boy who will just happen to have Downs Syndrome. We don't know his age or his name.  We just know he is out there somewhere and his home is here with us.  We have started the long and tedious paperwork/home study process.  We are excited.  SUPRPRISE! :)

Wednesday, November 7, 2012

Halloween Contest




This is the 2nd year in a row that wolfhirchhorn.org is holding a halloween contest to raise awareness for Tyler's syndrome.  Last year, they gave away several IPads to the winners and this year they are doing the same.  They have decided to add ITunes gift cards for the people who already have Ipads to be able to purchase some of the more expensive apps.  This site is very special to us.  When we first received Tyler's diagnosis, the internet was our main source of information.  None of the doctors we were seeing had ever heard of the syndrome let alone treat a child who had the diagnosis.  The internet can be a very scary place and much of the information we found told us Tyler would probably not walk, talk, or may not even survive past infancy.  Thank goodness we found the wolfhirchhorn.org site which had current stories and videos of real children who showed us a much brighter future than we had envisioned.  We joined this community and they embraced us.  It was an excellent resource for the many questions we have had.  Something I learned is that when you google a topic, the site that has received the most traffic will be near the top.  This contest creates thousands of new visitors to the site and also raises awareness about the syndrome.  The goal is to keep wolfhirchhorn.org as one of the first sites a new parent will visit when they have a newly diagnosed child.  That way, they may see stories that give them hope; not statistics that are gloom and doom.  I am asking that you visit the site and vote for Tyler the lemur.  Take a look around, learn something, and pass on the link to friends.  Only one vote per device so vote on your phone, laptop, work computer, etc.  They won't release the winner or number of votes until the end but they do release clues throughout the week.  I have had some people question about the names on the right side and the numbers beside them.  Those are NOT number of votes but the posts that are associated with the child.  Happy voting and Go, Ty, Go


http://wolfhirschhorn.org/2012-halloween-contest/

Saturday, November 3, 2012

Tubular!

Tyler's surgery went well and he is back to his normal self.  We will find out in 3 months if the deflux injection procedure for his kidneys worked.  Until then, he is on his daily dose of amoxicillin to make sure he doesn't get any kidney infections.  The g-tube placement went well and he was just really sore for about a week.  Brian and I are relatively comfortable and learning the ins and outs of using the tube.  For instance, last night we learned that if Tyler is going #2 during a tube feeding we should clamp the tube to stop the feed and wait until he is finished. If you don't, he will vomit everything back up (which he did) resulting Ty and I both covered in puked up Pediasure (gross!).  So chalk that up to a lesson learned and onward we go.  We were excited to learn that he gained 6 ounces in the first week of having his tube in.  He is sleeping better and napping longer.  We are very pleased with the decision and confident we will continue to see the benefits of having it.  Right now, we are giving him a bottle (6 oz pedicure/1 oz water) every 4 hours and whatever portion of the bottle he doesn't drink goes directly into the g-tube.  Sometimes, this may be 4 or 5 ounces and sometimes he drinks the whole bottle-no tube needed.  It really is a load off.  We know without a doubt that he is getting enough calories, nutrition, and hydration.  I did get a call from his nephrologist about the high calcium issue that we have still not resolved or found a cause.  He has done all the testing he knows to do and referred us to a endocrinologist who has special interest in kiddos with chromosome abnormalities that have high calcium.  She wants to see us and they are working on coordinating her appt with one of the other Riley trips we already have scheduled over the next couple months.  Hopefully we can that resolved along with a good report about the kidney surgery and we will be in the clear.  Our next goal is to make it through the winter months without any hospitalizations. Go, Ty! Go!