Friday, March 20, 2015

March 20, 2015

It's been a long day of WAITING ... but I'm happy to say we will be discharged around 8:30pm! Lexie has done well, and we are still planning on heading to Florida in the wee hours of the morning. Please pray for safety and protection for Lexie while we are away.

Lindsay's mystery rash persists, she will be seeing the dermatologist in AZ again on Monday and we are trying to get her into a dermatologist here in Cincinnati.

Praying for resolution, healing, mercy and grace.

Thursday, March 19, 2015

March 19, 2015

Quick update:

Lexie has been doing ok. She was throwing up a little this morning but seems better now. She will get an infusion of pentamidine to help protect her lungs from infection once her methotrexate clears and we are still planning on discharge sometime tomorrow.

Lindsay saw cardiology at Phoenix Childrens and all is well with her heart. Praise God! They pulled dermatology into the room to see her rash and they said it was "impressive". Spoke with the dermatologist she has been seeing in AZ last night and biopsy came back "spongiotic dermatitis". Not exactly sure where this leaves us. We are changing her heart medication to make sure there is no drug reaction, more labs for mono/EBV and still waiting on strep titres. There is still much concern that she is not responding to any treatment as the rash continues to progress and we can't find the source of the symptoms. 

Please pray for healing for Lindsay (and Lexie and Mackenzie). Much love to you all!

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.

March 7, 2015

Kyle Jenkins YOU are amazing! Sooooo thoughtful ... Thank you for such a special homecoming for Lexie!
Thank you to the Anderson family for the special care package that was waiting at our apartment when Lexie got home. It came in handy for our journey back to IL today. And thanks to Stacy Person and the chemo Angels for your continued love and support! xoxo

March 6, 2015

Here's the scoop:

Lexie has done great this hospitalization (with the help of drugs), but we are SO ready to get outta here.

Having labs drawn at 4pm, if her methotrexate level is below 0.1 we go home, if not ... We stay another night.

Please take a second to pray specifically that her level is less than 0.1 and we can be discharged today. More when the results are in..

Later ..............

0.05 is the word!!! Woohoo! We're going home!!!

So incredibly thankful for Gods grace the past 4 days. Your prayers and God's answer through His tender, loving care of Lexie's broken body (and my fragile state of mind) have carried us through another hospitalization. We are grateful for each and every one of you!

March 5, 2015

Thank you so much for your commitment in praying for Lexie and our family.

This hospitalization has been night and day different from the last. Lexie's been feeling well without ANY nausea and vomiting!

Praise God!

She slept most of the day away yesterday, but has been awake and cracking us up today.

Please continue to pray for her kidneys and clearance of the methotrexate. She's needed a couple doses of Lasix to help get rid of all the extra fluid she is receiving to flush her kidneys but so far so good.

Praying for discharge tomorrow eve!

March 4, 2015

Amazing Grace !

Tuesday, March 3, 2015

March 3, 2015

Gear up prayer warriors ... Here we go again.

Lexie is in good spirits (with the help of drugs, haha!). And we are hopeful this round will be better with a more aggressive plan to fight the nausea and vomiting. And to top it off, Kali is here for the week for moral support! Port accessed, IV in and hydration started. ETA for the mother bag is 6pm.

We had such a great weekend at home and are now feeling recharged. Lots of prayer requests today...

Please pray for protection of Lexie's kidneys, quick clearance of methotrexate, and protection from all side effects.

Also, I met with our financial advocate this morning and she appealed our Medicaid denial! This is HUGE! Please join us in praying our appeal is approved and Lexie qualifies for services. Storming the gates of heaven for this unexpected opportunity.

Switching kids ... We are struggling with educational placement for Mackenzie next year and trying to figure out what is best for her. Big meeting on April 20th that we ask you to join us in prayer. Praying that God leads and guides us in our decisions for Mack and that He would open and close doors without finances or school decisions being a barrier. We just want what is truly best for Mack to help her reach her potential ... No matter what that looks like.

Side note: We are SUPER excited we got in the "suite"! We're in a big, cheerful room which is such a nice unexpected surprise, especially since Kali is with us for the week. Feels like we won the lottery! Praising God!