...is not a good medical diagnosis. The irritation around Josie's g-tube has continued to escalate to a point that she is in constant pain and now shows no interest in eating. As you can see from the picture it isnow bleeding regularly and there is a divot in her skin from the repeated steroid injections. She is also getting a secondary skin infection from all of the irritation. Needless to say, we've been busy this week searching for a solution. The surgeon basically said Josie has bad luck, they rarely see this occur. He is planning on taking her into surgery early June to remove all of the scarring and granulation tissue that has developed. Unfortunately, this is a temporary solution since we have now done this 3 times with the same results after a few months. It is really a catch-22. The 
surgeon says she needs to eat on her own, because this is a losing battle and the feeding clinic says we need to get the pain under control before Josie is going to be successful eating on her own. So far, the plan is to operate on it the first or second week of June and also repeat the airway surgery that she had in January. This will give us a few months of good tube health and give Josie the best possible opportunity to swallow. In the meantime we are trying to getinto an immunologist and wound specialist who can offer some new insight into how we can manage the tube long term if we need to. The thought of her not eating on her own some day is very scary because as you can see we don't have a very good strategy for feeding her. O
ur only hope is that this surgery can reduce her pain and we qualify for the feeding program at KU Med to begin weaning her off of the tube. We have increased her pain medication which has temporarily helped, especially in the area of sleep. While the kids and I waited at the surgery clinic this week I had a chance to visit with a parent advocate from Children's Mercy and expressed the frustration in managing so many specialists as a parent. She told me about a new clinic they have for complex children where they are managing their care through a pediatrician at the hospital. The pediatrician basically serves as the mediator between all of the specialists and helps us get into who we need to see, while also making sure that nothing is being missed. We have needed this for quite some time and have our first appointment with a complex care doctor on June 10th. The advocate told me that this office can also help us manage our appointment schedule. What a godsend! Just this week I received or made 25 phone calls all related to Josie's medical care. It would be so helpful to have someone at Children's Mercy assisting us with this.
Chad and I did get a nice break last weekend while Grammy and Papa kept the kiddos. Both kids did awesome and Chad and I really enjoyed the time away. We basically are running on a clock all day around feeding schedules, so to only have ourselves to worry about was really nice. We actually took a nap!!
Henry is still doing great. He is pulling up to just about everything. Josie and I can no longer color at the little picnic table without him getting involved:) He keeps wanting to eat our crayons, which irritates Josie quite a bit:) They are really just the best of friends and it is so neat to watch them play together. As you can see, they enjoy everything from together from bathtime to playtime.
Hope everyone has a good weekend and we should know more early next week on Josie's surgery date. I'll pass it on when we find out.
