On Thanksgiving there are so many things to be thankful for. We are so thankful for all God has given us. We are very thankful for family and friends who have walked this journey with us. We are thankful for Luke's donor family who made a very giving decision in their time of incredible of pain.We are thankful for Luke's medical team that is right beside Luke in this journey as well.We are thankful for our home away from home, Ronald McDonald house and all the staff at RMH Pittsburgh.
Glen and the boys
Glen and the three other big kids drove out to Pittsburgh as I was driving back to Nazareth to work. We met half way across the state at a rest stop and had dinner together. Luke was so happy they were coming for a visit.
Other happenings this week:
Luke had some special packages/cards this past week.
E-cards!
Legos!
A card from the pharmacy staff that has provided all of Luke's meds for the past 12 years.
a remote control tarantula this is a big hit
ok the pizza dinner ordered by a friend back home and delivered was for the rest of us... Sadly Luke couldn't have any
more fun stuff.. bubbles that don't pop
balloons that we learned do pop
And there is that tarantula again!
walks with his sisters
Baby time
kyara doing schoolwork
Feeling up to a trip to ritas (he had a few spoonfuls that night wasn't a good night after)
Checking out the Christmas decorations
giant tree in the healing garden
Snow has fallen a few times
snuggling
And visits from friends (this is a former Lafayette Mens Soccer team coach who got to know our boys through their Team iMPACT program. He is now at Michigan but came home to Pittsburgh for Thanksgiving). It really brightened Luke's day to see Coach Justin again.
Unfortunately this week Luke's home away from home 7A was transferred to a new floor.. now 7C. The rooms are a lot smaller which isn't a huge deal... Well unless you have 5 siblings....
One really cool thing Luke and the girls got to do was to make voice recordd cards for Thanksgiving. Luke made one for his buddy Alex.
If the sound doesn't play for you here it is on his Facebook page
Love+Luke's=Life for Luke
Medical update
pirate ct room
.Finally today his kidney function labs showed signs of improvement. He continues to need more fluids put into his body daily to keep his kidneys healthy.
He has had a lot of ups and downs with his belly. It was decided to switch him to a special kidney friendly formula going through his J tube. Before doing that his belly wasn't tollerating the regular formula. So we went back to just pedialyte. Tuesday night he decided to have two graham crackers with a thin spread of peanut butter. He had been off any formula or pedialyte going through his feeding tube a few hours and we thought well maybe he is hubgry and that is a good sign, let's try it.. A few hours later just after starting up the new formula he had a bad belly episode. Retching, huge belly that was firm, and lots of pain. Today pedialyte was restarted and just a few hours later once again belly pain, lots of greenish liquid coming out of his stomach tube and some Retching. So GI has decided he will take a three day break from food/formula or liquids in his tube. Not sure if this is his belly taking a long time to feel ok after surgery or could he possibly have an adhesion from the surgery.
For now he had some xrays done tonight and will have more tomorrow. Unless it is very obviously scar tissue causing the problem no one wants to rush into another surgery.
This is the second Thanksgiving Luke has not been allowed to eat. We have promised him that once he gets home and can eat we will have our own Thanksgiving dinner and that it is ok it isn't on Thanksgiving.
(Please excuse the poor typing.. this was done on my phone... And it is very late)
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