Weight, what?!?

     The latter part of 2017 proved to be very busy for us.  In October, Kerstin had her g-tube changed to a gj-tube.  That was followed by a very unexpected stay in Children's Hospital.  However, since October and the continuous feedings she has been on a constant climb in pounds.  For the longest after getting the feeding tube Kerstin's weight had been fluctuating between 75 and 80 pounds.  She was healthy and her nutritionist was pleased with her progress.   

     Things were going well until they were not so good.  Kerstin started to have these smacking instances along with vomiting which would lead to gastro issues and her aspirating leading to aspiration pneumonia.  All of that lead to a few illnesses and hospital stays last year.  For the most part, and thankfully so, Kerstin has been pretty healthy with no major issues, just allergies lately.  

     The past few months, at various follow up appointments, whenever she has been weighed, Kerstin is no longer in a fluctuating phase on this feeding tube journey, she has been on a steady incline.  well over 90+ pounds.  Normally this may not be thought of as an issue but when you are immobile and assistance is needed for everything, that kind of sudden weight gain can be a bit much.  So, simple changes have been to her continuous volumes made with the hopes of keeping Kerstin in her range of 80-85 pounds. 

     We will see where these changes take us...

More water intake!  Drink up.

More to come...


It's happening so quickly!

Epidermal Nevus

     This year, has been going fairly well however, I have been really bad about updating things here.  I have been updating Kerstin's Instagram a lot more.  Be sure to following Growing With Kerstin there.  
     Now, I will take us back to August 2016, when I noticed this little spot behind Kerstin's left ear.  At first I was thinking maybe her earring had scratched her or the post had stuck her and I immediately started applying an antibiotic ointment to it.  It seemed to smooth out some but, later it came back and appeared bigger and no matter what I applied it seemed to keep growing.  All while growing, it become more irritating to Kerstin,  she did not want it touched in any way, not to have the area cleaned while bathing, not to mistakenly touch it while dressing or anything. 

continuing to grow

     In October of that year, Kerstin had an appointment with a dermatologist that I walked away from still unsettled and wanting more answers.  The appointment just did not seem thorough or complete.  There had been cultures (cultivation of microorganisms) done on this area only to come back negative for any types of fungi.  So, back in December of 2017 a new medical doctor was added to Kerstin's team and the center of her medical home, a female!  Yes, we were enthusiastic about it and she went right to work with us.  On a thorough exam of missy, she determined that she would refer her out to another dermatologist. 

     February 2018, Kerstin had a new appointment with dermatology and it was determined that a biopsy needed to be performed in ordered to know how to properly treat this spot, whatever it may be.  Scary thought of this in office procedure where a small plug of her skin would be cut so that it could be properly tested. We have to do things that are oftentimes scary in order to take care of our children.  The process included a numbing applicant, that would be in place for 30 to 45 minutes before the cut.  Then, post cut, we had to wait another 30 minutes to ensure that the bleeding had stopped before she could leave.  

The wait!  It is so hard to be patient and wait on the results of a skin growth on your child.  Then the call comes and the nurse says she is calling from dermatology with biopsy results.  Take a deep breath and listen, "epidermal nevus".  What?  A very irritating and itchy skin mole.  It may come back but she has been prescribed a skin topical and now she needs to bath with have her hair washed with products that contain ketoconazole as an ingredient.  Since February, that nevus has inflamed twice, the cream is applied and it goes away again.  Another step on this journey. 

More to come...

References:
Epidermal nevus.  NIH U.S. National Library of Medicine https://ghr.nlm.nih.gov/condition/epidermal-nevus