Sunday, September 8, 2013

12 Appointments in 2 Months.....No Biggie

Good Evening Loyal Blog Followers

We have been very busy around here.  We only get a few months of freedom before viral season is upon us again, so we have taken full advantage of the freedom to travel, visit Oklahoma as often as possible, go to worship as a family, and get as many visits in with family and friends as possible.  We have thoroughly enjoyed this summer and have made some amazing memories along the way.

Emma has been rocking along health wise and been as steady/stable as she has been for a long time.  We are very thankful for this and have enjoyed this stage in Emma's health journey.  However, about a month ago, Emma's blood work was off (electrolytes/ kidney numbers) and she started fighting us when we tried to get her to eat.

Since her numbers came back off, we have made numerous changes in medications and are trying to get her normalized again.  We will get labs again tomorrow and see her cardiologist on Friday for a brief check-up.  In regards to her eating, we noticed some white fungus type stuff in her mouth that turned out to be thrush.  We thought that a two week oral treatment would do the trick, but alas she still did not want to eat.  We visited with her doctors again about this and they decided that her thrush has probably grown down her throat.  UGH!  We have started a different med in hopes to remedy this issue, but in the meantime, Emma wants nothing to do with eating and even vomits when we try to get her to eat.  For the first time in MONTHS, we have had to run formula.  I was upset about this step backwards, but obviously do not want to cause Emma excruciating pain.  We have one more week of this med and pray that this is the answer to this quandary.  If not, we start back at square one.

Emma saw 3 doctors this past week.  Her cardiology appointment went well besides labs.  Her echo was stable which is great.  She saw a dermatologist for the first time for a rash on her leg, arm, and face.  The dermatologist informed us that it is due to dry skin that is clogging her pores, so we are making some changes to her body wash and lotion.  Emma also saw her scoliosis doctor to check the status of her spine.  Overall, it was good news.  Over the last six months, Emma's s-shaped curve has basically remained the same.  Six months ago, her upper curve was 34 degrees and her lower curve was 38 degrees.  Today, her upper curve is 31 degrees and her lower curve is 40 degrees.  The cumulative curvature degree has remained the same sans back brace which is encouraging news.  We will keep a close eye on her back and x-ray again in six months.

Emma had her reevaluation for her therapies a couple of weeks ago.  She gets reevaluated every six months to check for progression and see what new goals we need to set for her.  Emma did very well and scored especially well in her language skills.  She continues to lag behind the most in physical development, but is making baby steps in the right direction.

We continue to ask for your prayers as we try to straighten out her labs, figure out the reasoning behind not eating, do our best to keep her healthy as we head into viral season.

As always, God is Good!  All the time!  God is Good!