I am back at the hospital after being in Northwest Arkansas for 48 hours to try to find some records for insurance and aid programs and also to try to get some finances in order among other things.
Tanja’s sister Heidi was here Saturday and sent the following update out to the Facebook group that is praying for Robbie (now with about 1,100 members!) -
Kenneth has been in Fayetteville with Shelby and Bethany from Friday afternoon through Sunday afternoon.
I’m going to just write a brief update to try and keep all of you prayer warriors informed.
Robbie is still struggling with muscle spasms the last couple of days and had a very rough night last night. He had to get another IV put in because his sodium was low and he was beginning to dehydrate. He has occasional sips of water with a spoon and sometimes eats ice chips. His last day to receive steroids was Saturday morning.
He is continuing to be bothered by his feeding tube and yesterday the surgery team decided to have a peg tube surgically inserted into his stomach. This surgery will be Monday or Tuesday. They are hoping this will not be so annoying for him and may in fact help him with his swallowing and speech.
Sometimes it is very hard to witness the tremendous pain he’s having to endure. At this point he’s had 13 IV’s put in and moved rooms in the hospital 5 times. Yesterday alone, he was “pricked” 12 times for blood samples and his young body is bearing the scars and bruising
Today (Sunday) after talking to Tanja she did say that he was communicating (either by writing a word on a marker board, or answering yes or no with his hands) some better. His attention span was good and so she told him stories and he listened and liked it and even laughed. (It was a story about a young brave prince named Robbie and his two princess sisters Shelby and Bethany. And Tanja used this story as a way to explain to him about some of what’s gone on with him being sick.) It’s hard for the family to know if he has a concept of time and understanding about what all has gone on.
The entire family is so thankful for the continued prayers for this sweet child and asks for more on his behalf.
PRAY FOR THE MUSCLE CRAMPS TO STOP.
PRAY FOR THE SURGERY TO BE SUCCESSFUL WITH HIS NEW FEEDING TUBE IN HIS STOMACH.
PRAY THAT HE WILL BE ABLE TO SWALLOW AND TALK.
PRAY THAT HIS FEET WILL BE STRAIGHT AND HIS THERAPY SUCCESSFUL.
AND DON’T FORGET TO PRAISE GOD IN ALL THINGS FOR ALL GOOD THINGS ARE A GIFT FROM HIM. THANK YOU GOD FOR JESUS MOST OF ALL!
Unfortunately, my 2 days away were 2 extremely difficult days for Tanja and the many family members and friends who filled in for me. After arriving, Robbie wanted me to hold him so I pulled up a chair and pulled him into my lap and we cried together for a while and then he seemed to settle down a bit. We (Tanja, Shelby, Bethany and I) got his IV and feed tube unhooked for a bit and put him in a wheelchair and took him on a grand tour of the hospital which he seemed to enjoy. He started getting pretty tired after that and is now asleep. Bethany is reading next to me and Shelby is rubbing Tanja’s very sore neck and back.
Though it was very hard to be away, it was a blessing to receive in person the love and prayers from so many of you in NWA who have been lifting up our son. Thank you and God bless you all.