How Can I Help?

I would be lying if I didn't say that this year has been incredibly taxing on our family physically, emotionally, financially, spiritually, etc.  But I'm a firm believer that we receive the trials in our lives

A) Because God knows us and knows what sort of adversity we need in order to progress and grow as individuals

B) To be mindful of our blessings and to be more appreciative of what we do have in life

This year has been full of growth and introspection. Among the other things that I've pondered over the year has been how incredibly blessed we HAVE been as a family.  Throughout it all, KC and I have had the strength of our friends, family, loved ones, church and faith, an incredibly supportive work environment, and even those who are strangers come to our rescue and lift us up when we were in need of help.  I have been humbled the the generosity, love and grace of others. 

It now appears (knock on wood) that we are finally through the worst of it.  Jacob has had his heart surgery and has been given a clean bill of health in virtually every aspect of his life.  Now all we have to worry about is making sure he has that little extra time needed to progress physically to his milestones.    KC is over the worst of his surgery and is now concentrating on physical therapy and working towards the ever-elusive 100% recovery mark.  Nathan looks well on his way to recovery and appears to actually ENJOY having his cast as an excuse to get out of doing the list of to-do's I create each day. 

Now that the storms have calmed, I've been wondering what I can do to give back and perpetuate all of the love and kindness our family has received - and to help those who may find themselves in a predicament similar to ours - but without the tremendous support system our family has had.  And I've come up with two things I thought I'd share.

First off, we're moving forward with Down Right Living.  It's going to be a non-profit organization designed to help those families touched by those with Down sydrome.  You can check out the website my daughter created at http://www.downrightliving.com

Secondly, I've found another non-profit that tries to find families for Children with disabilities in other countries.  What I love about it is that there's a grant system.  Finding families with the love and capacity to welcome a special needs child into their home is often difficult.  As soon as a family (regardless of singles, couples, old or young, large family, or no other children - it doesn't matter) commits to adopting a child, Reese's Rainbow starts raising funds to help pay the fees associated with adoption. 

I finally got on to their site to learn more about the children and was flabbergasted at how many children there were (most of the children are institutionalized once they reach the age of 4-6 years of age) who needed homes, and the range of care needed - some needed little or no care.  They just needed a home.

Even if you're not wanting to adopt, it's a great place to check out or donate - $5 makes a big difference to the lives of the child and the families trying to raise the $ needed to bring their babies home. http://reecesrainbow.org/ministry-video


UPDATE:  We've created a GoFundMe Link to help pay for the fees associated with starting up our non-profit.  Please please PLEASE! Donate if you can.  

Getting Ready for the Long Haul

I got to spend the last couple of days visiting doctors again.  Yesterday was spent with the pediatric cardiologist doing another ultrasound on Baby Jacob's heart to make sure there weren't any changes.  Luckily there weren't.  It was interesting, though, listening to the Dr. ask me if Jacob's Downs Syndrome diagnosis was going to affect how I 'handled the baby'.  Obviously I said, "No" and informed him that we were all very excited to have the new baby at home, especially the children.  He seemed satisfied by my answer, but I couldn't help but wonder what % of people actually DO change how they are going to 'handle the baby'?  Abortion? Adoption? What do they do? And WHY IN THE WORLD should a poor, helpless,  innocent little child be punished for something that was never his fault in the first place???

Preparing for Baby Jacob and his Down syndrome diganosis

 Dr. Jensen went over what I could expect at delivery and the weeks surrounding our baby's birth. He informed me that Jacob would be taken to NICU and would probably stay for 3-5 days just for monitoring.  He didn't expect them to need to give him any medicine or stick him with needles etc.  It would just be a precaution.  He then said that soon after the birth he would want to see Jacob at his office and would most likely prescribe him some heart medicines.  The medicines wouldn't fix the heart, but it would help with his growth as the babies usually have issues with lower birthrate and growth rates.  He asked me about Jacob's due  date and I told him it would be Halloween.  He was not too happy about this because that would mean that they would normally try to do his heart surgery around what is normally flu season.  So he decided that if possible, we'd prolong Jacob's surgery until Spring when there was less chance of him being exposed to anything with his weakened immune system.   He told me he wouldn't need to see me again until after the baby was born, and I was done!

Today, I met with Dr. Zweisler.  He did the usual - measured my belly, felt for the baby, and asked me if I was "OK".  My goodness, if he looks at me with those concerned eyes and asks me if I'm "OK" one more time I might actually have to scream!!!  It's like he's waiting for me to come out of denial and totally break down right there in his office.  I guess he still has a bit more to learn about the strength of a Cady girl (Born a Cady, married to an Allred - in case you didn't know). 

He then went on to remind me that he'd see me in 2 more weeks then all of the testing would begin.  Apparently, children with Downs Syndrome have a tendency to have low birth weights, and often come with other 'issues'.  So he wanted to schedule me for weekly BPP's (Biomedical Physical Profiles) and monthly growth scans.  I researched the BPP and found this link which explains what I need to expect from the procedure: http://www.webmd.com/baby/biophysical-profile-bpp

He reminded me that the BPP's will be used to see if there are any other health issues to be addressed, and to see if the baby is in distress in any way.  Obviously, if Baby Jacob is in distress, they will take action to fix the problem.  He also told me that the growth scans will be used to see if there are any issues with Jacob's weight and growth.  So, I said goodbye to the Dr, went to the ladies in the lobby and set up my appointments.  18 of them in all over the next 10 weeks.  Ugh! That's a WHOLE LOT of time with the Doctors!!!!  Here's to hoping it all works out!