Wednesday, March 18, 2015

March 17, 2015

After a busy week at home, we are back in Cincinnati and Lexie is in the procedure room having her spinal as I type. Gearing up for her third high dose 24 hour methotrexate infusion.

Please pray again for protection of her kidneys, quick clearance of the methotrexate and from all side effects including nausea/vomiting. To be honest with you I feel drained, my plate is full and I'm feeling anxious and overwhelmed. Don't get me wrong, Lexie is doing really well and I am hopeful this round of methotexate will go as well as the last round with our plan for aggressive anti-emetics.

But we have a few other things going on ... Medicaid continues to be a battle and is consuming us with their need for all kinds of documentation that is time consuming to obtain. It seems to be a losing battle and added stress, but I will leave it in an open hand before God, trusting Him to meet our needs and see what He does with it.

Lindsay has had a very strange rash all over her arms, legs and now sides for the past 6 weeks. She has seen a few doctors, been on multiple rounds of steroids, antihistimines, antibiotics and nothing seems to be helping. She's had numerous labs drawn and in typical Johnson fashion, it seems to be mystery. She saw the dermatologist again yesterday and he was concerned about her lack of response to treatment. They biopsied her skin and want her to see cardiology this week to rule out a strep infection in the conduit or valves of her heart. They also discussed seeing some other specialists and the thought of more problems and more doctors appointments makes me want to scream or pull my hair out.

Please pray for healing of Lindsay's rash, for wisdom and guidance for her doctors and that we can figure out what is going on and get her some relief. We are considering bringing her out to Cincinnati if necessary. I will keep you posted as we get biopsy/lab/cardiology results and a plan.

We are supposed to drive to Florida on Saturday (providing Lexie gets out of the hospital on Friday). Unfortunately, when we booked this vacation we didn't know what life would look like and we didn't realize that Steve's spring break is different than the kids which means he will not be able to join us. I'm undecided at this point if a vacation is going to be relaxing or stressful.

As soon as we return, Lexie will go inpatient again and Mackenzie will stay in Cincinnati with us to have another eye surgery for her cataracts.

My head is also still swirling with her school situation and trying to figure out what type of placement will be most beneficial to her as we are realizing a tradition school day is not going to work. Please pray for our meeting with the school district on April 20th.

Taylor and her boyfriend are here in Cincy with us for the week. It has been a nice distraction for Lexie.

Thanks again for all you do for us, for loving us, praying for us and caring for us the way you do. We feel blessed to have you by our side through all the twists and turns of life.

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