the trip to chicago went well. traveling with one kid seemed like cake especially since he made christmas cards the whole way up there and listened to wizard of oz the whole way back. Abram did great with the grandmas. we were so thankful to have their help.
shriners hospital was another amazing experience. so many great professionals that care so deeply about kids. in one of the morning appointments, we met with the care coordinator who informed us that due to budget cutbacks, the type of jaw surgery that simeon needs (distraction osteogenesis) is not being done at shriners now. not to sound dramatic, but we were floored. this was the whole reason we had gone to that hospital, and really felt they would do the best job on this. it felt like we were back to square one. she couldn't give us any real promises that it would be put back into the budget as it is one of their most expensive surgeries, so it was one of the first to get cut.
we went to lunch, and at the cafeteria, they have tables right beside the play area, which includes basketball goals, air hockey, a play ground, ping pong and more. so joel and simeon were playing and i was sitting just thinking "this isnt what i had planned." i looked around me at moms pulling their kids IV stands while they walk, moms giving a juice box to a child whose head was being counterbalanced by a stack of weights, moms who have been there for a very long time. and i thought that none of us had planned this, none of us moms knew what the next year held. Each of us was taking one day at a time, one appointment at a time, anticipating as much as we could and letting go of our plans as new needs, new problems come up. being a mother is not about executing the perfect plan. its about being faithful to the needs of each moment as it comes.
so i held my head in my hands and let myself feel the powerlessness of my situation and i asked for help. I called upon Mary and St. Monica to rally the troops of praying mothers in heaven and ask God to open doors and show us the next step. Not the whole big plan, just where to go from here.
in the afternoon, we met with more drs. the dr who is the expert on jaw surgery was out sick, but we talked with the orthodontist that has worked for 15 years with surgeries like what simi will have and he gave us some really helpful information and reassured us that in most cases jaw distraction can be done any time between 6 years and 12 years. we had thought we maybe had a 1 year window when this surgery can be done, so it was good to know we have more time.
then we had the big meeting at the end with all the white coats. i really believe this is the ideal for healthcare. all these people coming together and talking with the parents and patient about what is going on from all the different areas of care. in that meeting, one dr, who we hadnt even seen told us that if simeon needed surgery right now, there is money left over at the end of the year and it can be used for kids whos care was cut out by the budget cuts. she also told us that if our insurance would cover it, then he could have the actual surgery at another hospital in chicago by the shriners surgeon and then receive all his post op care at shriners.
we left that afternoon feeling much better than at lunch. we were heartened that there are ways for our boy to get what he needs by people who really know what they are doing. we still need some more information from the surgeon who wasnt there before we will know what the next step is. we dont know what the plans are, but we do have assurance that the doors will open as we need to move forward.
thank you so much for your prayers.
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