As summer ends

This summer's weather has been wonderful for Luke. Cooler days than normal which means getting out and walking to keep his lungs healthy everyday!

We are loving our Crop Share Agreement Farm boxes! Alll organic ingredients and the kids have all tried and mostly loved new foods. This dinner was all from the box... Potato leek soup, eggplant parm, and roasted cherry tomatoes! It has inspired Luke to begin working on his Cooking merit badge now that his Gardening badge is complete.

Makayla has become a cucumber lover this summer!

Luke's first sleepover... this night with Alex was so special to him...

Double the oxygen that night. 

I love that Luke loves to read!

Goodnight hugs.. He loves being an Uncle.

August has had some tough things as well. One of the boys' fellow Boy Scouts in their Troop was hit by a truck riding his bike. He sadly died.. Austin was 16.

Though we have often thought (a lot) about losing a child, I cannot imagine what his family is going through.

On the same note,a little girl, Isabel, lost her battle with Childhood and Diffuse Lung Disease (the group of rare pediatric lung diseases Luke had) before having her opportunity for transplant. The next day a young boy, Migeul, lost has battle from chILD as well. I have seen how far we have come with chILD in the past 7 years but we have so much further. Since it is such a rare disease there is so little funding, basically just what the families raise. The doctors who treat this are so passionate and want to find a cure. One day no child will have to pull oxygen or get tangled in the many feet of oxygen tubing attached to them, no child will need a double lung transplant, and no child will die from this group of diseases.

Www.child-foundation.com

We also learned that Luke has severe reflux. I was certain it would show this as it was obviously his fundoplication wasn't keeping his stomach contents down during his June hospitalization. One reason may be the fetching he does with the bad belly. Right now we are fighting with our new insurance to cover the zofran they he gets every 8 hours for nausea. The reason they won't give it.. they only approve scheduled Zofran for oncology patients with chemotherapy. Having a child with a rare illness that doesn't fit into a box is very frustrating with these types of things.The impedence probe he had done in Pittsburgh in the beginning of August showed throughout the day his reflux is severe. This is very bad for his lungs. Chronic rejection (what leads lung transplant recipients to hgo back on oxygen, need another transplant, or cause death) is well linked to reflux. Luke has already had surgery at 6 months and at 7 years old to stop reflux. The more times it is done the bigger the risk of perforation, complications, etc. We will be meeting with a surgeon in Pittsburgh when we are out for Luke's week of appointments the end of September. I don't want him to have another fundoplication.. it means being on a ventilator at least 24 hrs, it means being in the PICU, risks of surgery, risks of infection, scar tissue in his abdomen, etc... But how can we take the chance with chronic rejection.

I am so very thankful Luke has been out of the hospital since June. What a huge blessing for our family this summer! In 2 weeks we are excited to be a part of the Wings Flights of Hope annual BBQ fundraiser. 3000 people attend this as their major fundraiser to cover the cost of fuel and other expenses the organization incurs while flying patients all over the northeast totally free to all patients and their families. This organization means so much to our family and is such a huge part of Luke's lung transplant story . We will drive up as a family to Buffalo and are excited to attend this BBQ and be a testimony to others how critical Joe and his team at Wings are to families like ours.

Tomorrow starts our second year of cyber school. Fall soccer is in full swing with Gregory. Gregory and Luke are loving being a part of the Lafayette Mens Soccer team through Team Impact once again. Dance classes, Scouts,preschool, field trips, and more start this month.  

Thanks so much for continuing to follow Luke's journey ... We love hearing of everyone who reads his blogs, prays for him (and the whole family), and thinks of him (and us) even when it goes too long without a post! For those on Facebook he has a page called Love+Lungs=life for Luke that mostly is Photos of the Day... To be able to share the everyday ups and downs of living after a double lung transplant.

Please pray for continued good health for Luke. A smooth transition to the school year and multiple activities. As the flu/RSV season (and common cold) comes upon us pray for protection that Luke doesn't get them this year. Please pray for guidance for us and his doctors during his week of appointments in Pittsburgh.. and that there is a room for us at Ronald McDonald House... It makes such a huge difference in having that week of appointments being less stressful (and so much more affordable!!).