Visits, Visits, Visits

It has been a while since I last posted and Josie has been busy. In the last couple of weeks Josie traveled to Wichita, Grand Lake, Baxter and Kansas City. Before we head to Mayo we wanted to make sure Josie saw as much family as possible. We aren't sure if she is going to need surgery when we get back, before Henry arrives, and knew the fall will be an impossible time for us to travel with the little guy coming. Josie spent a nice couple of days in Wichita with Grandma Stewart and finally got to meet Aunt Jean and Uncle Fred, and Aunt Susie and Uncle Carl. We were unable to travel to Wichita for the winter holidays due to Josie's surgery and we wanted to make sure everyone at least got a chance to meet her before Henry came. The next weekend we went to Baxter and spent sometime with the Johnson sisters and then spent a day at the lake. Josie enjoyed all the company and attention of the sisters. At the lake Josie got to meet Uncle Carl and Aunt Sue for the first time and play with cousin Lane. It felt a little more normal to travel and visit family. Josie is really coming out of her shell around people. It took a little while for her to get comfortable being around more people, but she has really adapted well and her social skills are improving.

This week Josie had her last road trip before Mayo for a couple of follow up appointments at Childrens Mercy. We saw the surgeon and he took a look at the scar tissue that is developing around the top of her g-tube. He isn't sure what it is yet and is hesitant to remove it in the operating room. He said that typically they wait to clean up scar tissue until the tube comes out permanently. If he had to remove it now while the tube as still going to be in place it would leave a hole in her abdomen next to the tube. We decided to wait a couple of months and see if the tissue stops growing. We may then try some steroid injections to reduce the height of the tissue. Basically, the concern is that it is making her tube sit in an uncomfortable position and irritating the skin at the bottom of the tube. We may not have a good solution for it to be improved, though. Then, we met the ENT nurse practitioner to have Josie's tubes checked out in her ears. So far the tubes appear to be in place, although this fall she would be due to have them replaced. The nurse practitioner also wanted to see her back in a couple of months to see how the tubes looked then and find out about any test results from Mayo. There is a growing consensus that Josie may have a partial cleft palate or submucous palate that is causing not only her feeding issues but ear issues. The nurse practitioner agreed this may be the problem and said if Josie gets it corrected surgically then she wouldn't be a candidate for replacement tubes in her ears. The cleft surgery would remove the primary cause of fluid traveling into Josie's ears. We will learn more about this at Mayo. Josie was a trooper the whole day. Unfortunately, she is resistant to sleeping in her car seat unless she is working on 6 hours or so more a nap, so it makes for a long day to travel to KC and go to several appointments. Luckily, Gramma Scott came with us for the company and assistance.

Josie is also enjoying summer. We just started swimming this week and so far she enjoys it. The first day she was a like a fish in the water, but the second day we had a little allergic reaction to all the grass being mowed in the neighborhood. Hopefully, it stays warm this weekend and we can get in a little more swim time. Josie has also learned how to pull herself up. As you can see, this makes it easier to get to the books on the second shelf of our bookcase:) Josie is still trying to figure out how to sit after she stands but she recovers quickly if she falls.

Over the next week we are going to be busy packing and collecting all of Josie's documentation to take to Mayo. We are really getting excited about the trip and also nervous about what the findings are going to be. We are preparing ourselves for the possibility of surgery on her palate as well as her head. There is a possibility that her skull has fused early at her forehead and is causing the rest of her skull to expand toward the back. This could be putting pressure on her brain. We are going to have it evaluated while we are there and hope that it will be mild enough that she won't need reconstructive surgery. I have met a craniofacial surgeon in Dallas who runs a special clinic that does these types of surgeries for young children. He has already reviewed pictures of Josie via email and suggested that it is minor at this time but needs to be followed closely. When we are at Mayo they will do a 3D CT scan of her brain to identify where the sutures have fused prematurely and the type of pressure it is putting on her brain. Here is our tentative schedule. This may all change after we meet the pediatrician on Tuesday who will be the primary organizer of the visit. At the end of the week we will meet with the pediatrician again to get a plan of action based on all the findings.

Tuesday (June 8th): Echo-cardiogram and Pediatrician visit
Wednesday: Neurology, GI, and Cardiology
Thursday: Genetics and Eye Doctor
Friday: Follow up with Pediatrician

We should be headed home Friday afternoon or Saturday morning unless we stay over to see more specialists. We would be surprised they could get all the testing in in just a few days, but we are hopeful. I will try to update the blog everyday while we are there to keep everyone updated.

A note on Henry...he is getting big and is in constant motion. Everything looked great at the last appointment. It is hard to believe he is going to be here in a few short months:)

We hope everyone has a nice Memorial weekend!