We have started the process of organizing our lives to bring Ryan home, hopefully by tomorrow. Yesterday was full of meetings and brainstorming about what it is going to take to get us home and what we will need. Thankfully, we have good insurance coverage for all of the supplies we will need. The list is very long. The Dr.'s were also able to collect the blood for Ryan's genetic testing yesterday, we cowardly stepped out of the room while they were doing it. Mostly because we knew it needed to be done and we knew it would tear us up to see him hurting. We did not ask how many tries it took, but it was done. Some of the tests should be available in 7-10 days, however, the chromosome micro-array is going to take somewhere closer to 2-3 weeks.
We are going to be using a program called Wings to help us get situated at home. They are a group of 4 nurses, available to us 24/7 if need be that will check on Ryan a few times a week. They can help us get things that we may discover we need in the future and will help us through this process at home. They are like "hospice for kids" and are nurses that only work with kids.
Yesterday, my brother and sister-in-law flew in from London as well to spend some time with us. We are very glad they decided to make the trip as they just moved to London not long ago. We know it is a huge expense for them and are glad they will get to spend some time with Ryan too.
More thank yous are appropriate for Tri-Ko, my mom's co-workers. They sent breakfast for us yesterday and 2 gifts for our kiddos today. You all may be far away, but we feel your presence and your support. Thank you. We took some pictures of the bear with Ryan this morning that we will have to post later. We also want to thank Dave, Christine, Jane and Tom for the goodies they sent yesterday and the staff and parents of Good Shepherd for gifts and meals. We are so blessed to have such a large support system for our family.
Hopefully as we begin to adjust to our life at home we will discover a new norm for our family, but right now, it seems impossible to imagine what that is going to be like. We have begun the care calendar and added a link to it on our blog. If anyone wants to help us, we plan on putting many of our "needs" on there. Because it requires a username and password, and we do not want to publicize them on line, we would ask that you email Chris or I for that information. Chris - firstname.lastname@example.org Jenn - email@example.com
The only real changes for Ryan in the past couple of days seems to be his energy level. He is wiped out after just a short 1/2 hour of "playing" and needs to rest again. Thankfully he has been sleeping well at night, so the nurses tell us. He just has to work so hard to breathe that he doesn't seem to have much energy for more than that, but when he is ready to play, we PLAY! (As you can tell by the video we posted earlier this week). There will be more to come because we want you to see our joyful little boy too!
We will let everyone know for sure when we are headed home, but our goal again, is tomorrow. We'll see if we can keep everyone on track for that.