Stalemate

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Since my last blog, I have removed lotion and body wash that includes dyes, fragrances and any food products.  The idea was that these items were causing Brian’s skin to react in a negative manner.

Sadly, it has not seemed to solve the problem.

Brian’s arms, legs and now his face (mostly on one side) are covered in a rash.  Upon initial examination, I might believe it is eczema and treat it accordingly, but it is not acting in the same manner as pervious eczema flare ups.  In fact, the only dry or rough spot appeared yesterday below his eyes, where the skin began to peel.

My fear over putting anything on Brian’s skin grew yesterday when I opted to keep him inside rather than risk putting sunscreen on him.  I know there are safe options out there and we do have the kind recommended by his doctor, but I am wondering if his poor skin needs a break.

After speaking to the allergist office again today, the nurse seemed stumped.  She said we could try purchasing our own sheets and towels and then wash them in safe detergent, but there is no guarantee it will make things better.  At this point, there are few definitives they can give me.  Rather than spending money on bedding and towels, I will first give the hotel’s offer of washing our things separate and in hot water a try.

This coincides with a visit to the gastroenterologist today.  He requested that I continue using Miralax on a regular basis and decrease the dosage to half a capful a day.  While this may still cause Brian to have extremely loose stools, the doctor is not concerned as long as they don’t total too many in one day.  I hate to think of what my baby’s poor little bottom will look like when this is over.

The allergist had placed Brian on Nexium once a day to combat the choking/gagging and episodes of bile, and the gastroenterologist decided it would be best to take that prescription and break it into two dosages a day.  He wants Brian to take the Nexium mixed with water on an empty stomach.

These orders seem simple enough, but these days, a bottle is never far from Brian.  The only time I could guarantee an empty stomach is during the early morning hours.  In addition, Brian has been “burned” before and is very suspicious of anything we give him.  While eating lunch at the Philadelphia FOP last week, he was given a cup of ice water with a lid on it.  He wouldn’t drink from it until I demonstrated first and showed him what was in the cup.

With this in mind, I began racking my brain on the drive back to the hotel, trying to figure out the best way to administer this medicine.  Brian’s water cups are on the way out and tend to leak all over him when he is trying to drink.  I decided that I would get him a new cup and hoped that by encouraging him to pick it out, he would be more inclined to drink from it.

We stopped at a CVS and I showed him many different options.  He chose one that some may consider to be too “young” for him, but at this point, if he will drink from it, I don’t care what those around me may think.  We returned to the hotel and I cleaned his cup, filled it with water and Nexium, and then added some ice for good measure (he is a bit of a prima donna when it comes to his water).

Sadly, as of right now, it is not working.  He asked for a bottle instead and since he is in need of more calories today, I don’t want to say no.

Side Note: Brian’s weight has remained the same since the last visit to the doctor on July 30, although he is slightly taller.

Over the next few days I will become more creative and somehow I will get him to take the medication.  I want the doctors to have everything they need in place when it comes time to perform his endoscopy and colonoscopy on September 10.

In fact, I asked the doctor if we were still on track for his procedure.  He assured me we were and would continue to be unless more issues came up in the next week.

I am frustrated still and wish I knew exactly what to do to help Brian.  Luckily, he is  a happy kid.  Although we have episodes once a day or so where I can tell he doesn’t feel well, for the most part he is the greatest person to be around.

It is easy to keep Brian happy when we are surrounded by such caring individuals.

Yesterday Brian was invited to throw out the first pitch at a whiffle ball tournament fundraiser hosted by the Custodes Pacis (Guardians of Peace) at the FOP.

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Brian had a great time and I was again humbled by the love and support I am receiving from these amazing individuals.  I have been fortunate to spend time with one of the members lately and told Matt that when this gentleman left yesterday, I found myself wanting to beg him to stay.  They have put me at ease and I feel right at home with them.  I don’t know the last time I met a more wonderful group of individuals and I look forward to spending more time with them in the days ahead.

These angels will be my salvation as I wait anxiously for Brian’s tests and the inevitable results.  I thank them for encouraging me to participate in events and forcing me to join the outside world.  I know I have said it before, but thank you will never be enough and I don’t know that they will understand just how much they mean to me.

Over the next few weeks I will encourage Brian to take his medicine, drink his bottles, and do my best to heal his poor skin.  I appreciate everyone who sent me suggestions for products and have reached out with words of encouragement and support.  Matt and I will continue to do what we can to thank you and keep you updated along the way.

We love you all.

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