Sunday, December 19, 2010

The Elephant In The Room

I am supposed to be doing some online Christmas shopping but honestly, I'm not really feeling the spirit of Christmas at the moment.  It has been a while since I've blogged.  I wish I could say it is because our lives have been pretty uneventful but not so much.  I am in Texas right now with the kids while Justin is still in Seattle.  Our house flooded recently and caused some damage to say the least.  I think at this point Justin and I have agreed we would like to find a place where we can sleep off the rest of December.  Can we end this year already?  We're sort of running low on positive thoughts as we are feeling pretty defeated these days.  Did I mention I am so done with this year?  Justin has been working like mad to do damage control and get the house to a point where he can leave.  It looks like he won't be meeting us in Texas until late Christmas Eve.  Sorry if I sound a little bitter but this was supposed to be our time to get away from the craziness of our everyday lives and heed refuge with my family in Texas.  The kids and I are definitely glad to be here visiting with my mom, dad, sister and her family.  They have been really great and a wonderful distraction for us.  But, of course, there is still that elephant in the room...F-P-I-E-S.

Brendan has been pretty cranky and not looking so good.  His last iron infusion did not go so well.  It was pretty brutal.  The nurses had such a hard time finding a good vein for the iv that Brendan was poked all over his little body.  Since he has not been drinking enough water (due to the oral aversion) I believe he has been dehydrated.  Thankfully, my mom found a cup that peaked Brendan's interest long enough today and we were able to get several ounces of water in him over the course of the day!!!  My mother has always had such a gift for making things better in her own special way.  I wonder if she realizes just what she has done for her grandson?  I have been so worried about my baby.  His color has been off, eyes sunken, and sooo unhappy.  Before he went to bed tonight, he was happy again and babbling.  He even ate several bits of potato!  I can tell my mom, dad, and sister are worried about Brendan.  Everyone wants our visit to be a good one but no one knows quite what to say...including me.  I am scared to actually admit how panicked I am about Brendan right now.  If my family and I talk about it, the flood gates might open.  Between Brendan's current condition, not having Justin here with us, and being displaced as a result of the flooding, I could blow at any time.  I am just thankful I have the support of my family...no correction, I am thankful I can SEE my family and just know they are here for me. 

So, for now, we are making the best of our situation and trying our hardest to see the positives.  We are thankful for our family.  I am also very grateful for our friends in Seattle who have each helped us in different ways with the house.  Did I mention Justin has a wonderful uncle named Mitch who has helped him immensely over the last few days?  Thanks Uncle Mitch!!!  We love you!

Lastly, for those of you reading this, thanks again for your continued support of our family.  There are several other FPIES families I know right now who are really struggling as well.  Will you please say a little prayer for those families and their precious babies too?  By the way, I imagine I probably won't have an opportunity to send out Christmas cards again this year but just envision our family sitting together in our holiday attire, smiling, and wishing you all a very Merry Christmas! 

Friday, December 3, 2010

Back to Basics

The evening started out nicely.  We attended Cameron's choir program and went to dinner with friends afterwards.  We were all amazed to watch Brendan feed himself.  Ah...we finally felt like a normal family for once.  Against my better judgement, we have been feeding Brendan pinto beans, french fries and table water crackers.  For the first time, he was showing such an interest in food that we did not want to deny him.  It had been over a week since we introduced those foods and he seemed to be doing just fine.  Within two hours of eating beans and fries, he began the projectile vomiting.  He was vomiting so frequently and forcefully that he began choking on it.  I was crying and telling him how sorry I was.  We arrived at the ER and an IV of fluids and Zofran was started.  It did not take long for his electrolytes to be affected and for dehydration to set in.  The vomiting stopped and the ER doctor observed him for several hours.  We are now back at home and feeling pretty defeated.  Brendan is continuing to react but at least the vomiting has stopped.  The irritability, lethargy, and diarrhea with/without mucous and blood will soon rear it's ugly head. 

The doctors want to scope Brendan but Justin and I don't see a point in it at this time.  Between Brendan's recent surgery, iv iron infusions, and last night's episode, we are only concerned with seeing him through this latest reaction.  It will take his system a few weeks to heal and then we will start all over again.  So, for now, it's back to breast milk only.