We had some really good news. AJ will be getting a cooling vest. You can look at the vest here: Cooling Vest. It will allow AJ to be outside more in the summer time heat. When the temperature is over 76 degrees, he blisters, his skin acts like wet tissue paper and he is pretty uncomfortable. The cooling vest hold a temperature of 59 degrees for about 2 1/2 hours. We will have an extra set of cooling packs so that it will last even longer. AJ's dermotologist prescribed the cooling vest but his insurance rejected the request and denied our appeal. Thankfully we were able to order the vest through the Butterfly Fund. They are a non- profit organization that is set up to assist children and families that live with EB. What a great organization and we are so blessed to be helped by them. If anyone is looking for a way to assist those with EB, this would be a great place to start. Just click on the link above. As soon as AJ's receives the vest, we will take some pictures and show it to you.
We have really appreciated your prayers and we rejoice in God's goodness to AJ. We are praying that his wound will continue to heal without any problems.