Tuesday, July 15, 2008

Last Night On 9 West

Ben's last night at Children's Memorial Hospital makes you remember the beginning of the journey God has taken us on 3 weeks ago. Scared, confused, and wrestling with so many unanswered questions was where we found ourselves while entering room 988, our new home away from home. God could not have been more real and present at Children's. The whole CF staff, from the residents, pulmonologist, nutritionist, and respiratory therapist were hand picked by God to care for Ben. Each member of the team is extremely competent in their field of study and have walked with Michelle and Paul through the good and bad. It is because of their knowledge and interventions that Ben's health is thriving. We thank the Lord for the the opportunity to build relationships with each CF member. Ben will regularly be visiting a satellite CF clinic in Westchester where the CF team will continue to care for him.


Today Michelle and Paul received all Ben's medications and are realizing the cost of it all. A huge prayer request is that Michelle and Paul will qualify for an assistance program to help with the expenses. They are also waiting on some insurance information and referrals. Please pray the referrals will come through so they are able to continue to see the doctors at Children's Memorial.


Also, please pray for Ben's transition out of Children's Hospital Wednesday afternoon. He will be getting his PICC line removed early Wednesday morning, packing up all his stuff, and heading out the door around noon. The whole family is going to spend some time at the beach in Chicago and then head home. Ben has not been outside of a hospital in 3 weeks, so this is huge for the little 2 year old!


Many of the doctors and nurses have already expressed that they will miss little Ben! ... In a weird way, I think Ben will miss them too! They have become a part of the family!

Ty and Ben spending time together painting.

Ben's first experience with another form of CPT, "the vest." Ben will get his own vest this weekend, which will buy his first car!


Brother Ty was giving Ben a big hug before bed time.


Aunt Krista and Uncle Tim came from Atlanta, GA to spend time with Ben.



Uncle Tim spend the night with Ben to give Paul's back a break from the uncomfortable hospital bed.

It's any mother's nightmare to find out your child has a chronic disease. Michelle has been unbelievably strong through the ups and downs. It's through God's strength that she is able to face each day, knowing God has complete control of her son!

From the beginning of Ben's diagnosis of cystic fibrosis, Michelle has clung to this verse:

Psalm 139: 13 - 14 - For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.

1 comment:

John Dekker said...

These are difficult times for you all.
Great pictures!
Be assured of the Lord's presence with you. He knows, He cares, He can turn things around. In the meantime, may His presence with you be your joy and strength.
Yours, John Dekker