Monday, December 22, 2014

The True Light

Last Monday I took Jake to his monthly dietitian and Occupational Therapist appointment, and left there feeling very defeated and worried about my boy.  Jake had not gained any weight once again, and for the first time he was starting to trend downwards on his growth chart, falling somewhere about the 3rd percentile for his height/weight combined.  That's a low percentile for a child to be at, and we immediately increased the amount of liquid feeds Jake is receiving through his NG, and I doubled my efforts to get him to eat high protein/fatty foods.  Today Jake was weighed again...and...he gained half a pound in 1 week! The extra calories are paying off, even though we have been struggling with increased vomiting from the extra fluid amounts.  Please be in prayer for weight gain and tolerance of the additional liquids.  Jake has been consistently drinking orally, but typically no more than an ounce a day and his preferred fluid is water, which of course has no calories.  Here is is today waiting patiently for the weigh in...


I took this picture a couple of weeks ago at the cardiologist's office, but I wanted to share it - the sweetness is amazing.  I don't know if you can see it in the picture but Jake is watching the snowfall.



Monthly RSV shots (Synagis) have resumed for the winter season, and although Jake hates the needles I feel some small measure of relief at another layer of protection for my honey.  Jake is still struggling with his asthma, although he has accepted his puffer more now that the frequency has been reduced to 3 times a day.  He calls the puffer his "pah"..."Want pah", he says when he sees it coming.  Along with the cold weather, my germ and sickness anxiety has also returned.  Jake rarely leaves the house now unless he is going to the hospital or to his Nanna's house, and when we do venture out our corner of the world is covered with hand sanitizer and lysol wipes.  Sometimes I wonder if the people watching me sanitize a shopping cart before placing my baby in it think I am nuts :)  Once Jake has had his G Tube surgery and recovered I'll be able to relax my efforts a little, but until then we have to keep him healthy.  It's sad though, as Jake has now started to pick up his shoes and say "I come" when he sees one of us putting on our coat and boots.  Little doll.  Someday I hope to give you the freedom you want, but for right now I need to keep you in the well sanitized cocoon of our house.

Christmas is fast approaching, and we took the kids to the Santa Claus parade last weekend despite the rain as it was 13 degrees outside and he had a good waterproof suit.  Lots of cookies were eaten while waiting for Santa!


You can see in the picture above that Georgia has lost her first tooth.  Can you believe that she will be 6 years old in January? Amazing.

We've been dealing with some health issues of our beloved dog Lukey.  Lukey has been struggling for a few years now with Lupus and hypothyroidism, now in addition to that he has a growth on one paw that the vet believes may be cancer.  After much debate we opted not to go ahead with a biopsy to know for sure because Lukey doesn't heal well because of his prednisone meds, and also because of the whopping $565 price quote.  Lukey's birthday is next week, and he will be 8 years old - we're going to party like it's 1999 with the sweetest dog in the whole world.

Jake also had his 6 month pacemaker clinic checkup, and we learned that his dual chamber pacemaker is pacing the bottom chamber of his heart 100% (as it always has been because of the third degree heart block), and the top chamber is paced 27% of the time.  This means that for 73% of the time one of the chambers is doing what it's meant to do independent of any assistance.  I'm thankful for that 73%, and hope to never see the number drop lower.  

John 1:9 says of Jesus's birth that "The true light that gives light to everyone was coming into the world".  I want to be sure to recognize the True Light in my world each day, not only at Christmastime.  There have been many times I have failed to see this Light, but I hope there have been more times that I have been able to recognize and embrace God's presence in my life.  Even through my anxiety, worry and frustrations - God's True Light is shining bright and I want to always be open to seeing and experiencing that.