Saturday, May 19, 2012

A D.A.D. for Emily

My mind has been so busy this week!
Emily went through her first stomach virus this week.
In case you don't know, stomach viruses in type 1 diabetics are very bad.  You see, in order to stay healthy (ok, alive really) a T1D needs to eat.  When you have a stomach virus, and are throwing up, it is impossible to get fuel into your body.  I spent two solid days on and off the phone with the pediatrician and endocrinologist, trying to decide if things had progressed bad enough to go to the ER for an IV with glucose fluid.  Thankfully, we were able to avoid that trip.  It sure was scary though.  She was pretty sick.  We didn't sleep much because we were awake checking her blood glucose levels.  I don't know how many times we said, 'I can't wait for her D.A.D. because then we would get some sleep' 
In case you missed my last post, I said that we had decided to start the journey of getting her a D.A.D...Diabetes Alert Dog.  D.A.Ds have been used for about 9 years and are showing they can do amazing things.  D.A.Ds are able to alert you to a high glucose level, or a low one 30-40 minutes before it shows up on a meter.  They can smell when your blood is changing.  Their noses are so sensitive, that people are reporting their D.A.D. can smell their person up to a mile away.  Kids are going outside to play, safely, because their D.A.D. is inside with mom, alerting her of any blood sugar issues.  Emily is unable to feel her lows, or her highs for that matter.  Type 1 Diabetics can have plummeting blood sugars, very quickly, which is very dangerous.  Too low of a blood sugar can result in seizures, coma, and even death.  Too high of sugars result in eye issues, hearing loss, heart problems, kidney problems, neuropathy, amputations..the list goes on and on.
Another, very real, and very scary issue is a relatively new syndrome called dead in bed syndrome.  For some reason, kids are having a harder time feeling their lows in the night, and more and more kids are dying in the night because of low levels.  Scientists are unsure why this is happening more often than it used to.  Parents didn't ever used to check their children's sugar levels at night, but now they are recommending checks at midnight and 3 am.  We know there is great value to this, as we have had to wake Emily up at midnight or 3 for juice because her levels are way too low.
As a family, we prayed and decided we wanted to give Emily the best chance at a long, healthy life.  We'd love to avoid as many hospital stays as possible.  We'd love to never see her in DKA.  We'd love to never, ever have to lose her to dead in bed syndrome.
These dogs are expensive.  But how do you put a price on the life of a child?  You don't.
So where do we stand?  We are on the waiting list, and should get Emily's D.A.D in January.  We have put $1k down and have raised a small amount more, just by spreading the word.  These dogs run $ we have a long way to go, but I have faith that we will raise the money.
We are working through a non profit, which makes things easier, because every donation made is tax deductible, and they are able to take stock transfers.  We are going through Guardian Angel Service Dogs, Inc...this is the only group who is approved by the Juvenile Diabetes Research Foundation, and their track record is impeccable.  We could have gone with someone less qualified and paid a bit less, but not when my daughter's life is at risk.
This is where you come in.  Would you consider making that tax deductible donation?   Would you share our facebook page to help spread awareness?  It can be found at Most importantly, would you please pray for us and our endeavors? 
To make a donation, you can visit and pay by credit card.  After you make your payment, you will receive an email asking whose fund to credit, you would let them know Emily Williams.  This is a personal email that is not automatically generated, so may take some time, but it will come!  You can also pay by check, sent directly to the non profit, made out to GASD, with Emily Williams in the memo.  You can mail them to Diabetic Alert Dogs by Warren Retrievers, P.O. Box 910, Orange, VA 22960
Thank you so much for your help.
Isn't she beautiful?
Orange, VA 22960

Sunday, May 13, 2012

Big, Long, Medical update

I can't believe I haven't posted since sweet, sweet Griffin was born.
OK, yes I can.  My computer battery doesn't charge anymore, so I'm rarely on my computer, because I hate being tethered to the wall.
That and life has just been, well, crazy.
I wanted to hop on though, and just give a general, medical update.
Firstly, Griffin is great.  They echoed him when he was first born, and he had two small issues, but he was less than 24 hours old, and most babies have these issues and they resolve themselves.  He will be echoed again at six months.  He has reflux, but is being treated for that.  He's such a wonderful little chunk!  At two months, he's 15 pounds.   I love his roly poly legs!  Everyone just loves having him here and they all want to hold him...for about two minutes, then they say he's too heavy! HAHA!!
Next, since we last spoke, Natalie and Zachary saw the cardiologist.  They both got good reports and go back in a year!  This is the first time, since Zachy was paced, that he gets to go a year in between visits.  Yay!!
Natalie is still being followed by pulmonology and is doing well.  We have been slacking with her breathing treatments, but she isn't having any issues, and we suspect soon, they will clear her from their team.  She still isn't growing.  She had gained a pound, and then at her last appointment, she had lost half that pound.  She is growing taller, just not gaining any weight.  She doesn't look unhealthy, just small.
Matthew was seen by the craniofacial team in Cincinnati on Friday.  That was a total joke.  The plastic surgeon was pretty much a jerk and said anyone who said anything more could be done for Matthew's nose, was lying to us, and there was nothing else they could do.  He left the room, and I told Matthew that was an unacceptable answer, and that I would search and find a doctor willing to help.  We did this when he was baby, doctor after doctor said they couldn't help, but we finally found one who could...I won't quit looking until we find someone again.
Dillon is normally left out of these posts, but he gets to be in this one!  A few days ago, he managed to run into an empty 10 gallon aquarium with a bare foot.  He sliced his toe up and cut his foot all up.  He ended up with 9 stitches in hiss big toe, steri strips on cuts on the bottom of his foot, and glue on a cut on the top of his foot.  He is doing well, though.
I have nothing medical to say about Collin this time!  He's doing great!
Lastly, Emily.  When I last talked about her diabetes, I was really struggling with it, emotionally.  I'm past that.  I realized that I am no longer angry when someone talks to me about it. I guess it's acceptance.  Acceptance that this is forever.  The highs.  The lows.  Nothing we can do except correct them and move on. She goes for her first 3 month appointment in a week.  That should be interesting.  The exciting news about Emily, is that we have decided to pursue the journey of a diabetes alert dog (DAD) for her.  She can't feel her lows, there have been too many times when she can't stand up because she is so low, but she says she feels fine.  She may be able to feel them, but she is too young to express to us what she is feeling.  We are so incredibly excited about this, and all that it will mean for her.  She won't be restricted due to her diabetes.  I will have extra eyes.  We are so crazy busy in our life that I can't always have my eyes on her, but her DAD will, and he/she will tell me if something is going on with her sugar that I need to know about.  These dogs are very expensive, so we will be fundraising like crazy, but it will so worth it.  I'll be keeping everyone updated on our fundraising progress!
Ok, that's it!  Hopefully, next update won't all be medical!
Oh, and happy mother's day to all the moms out there!
* I wanted to add pictures, but blogger has changed, and it looks like a pain right now, and my kids are sitting here wanting me to open my mother's day present!  Pictures next time!
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