It's been awhile

I've fallen behind on blogging! Oops!  

A couple weeks ago we started a peach trial.  Fresh peaches are currently not in any of the grocery stores in the area, BUT, Target now carries a new brand of baby food, Plum Organics, and they have peaches that have NOTHING else added to them.  So cool.  When we started the trial, B immediately had disrupted sleep.  She was having some strange coughing attacks a few hours after eating them as well (I think a reflux issue?) We stopped the trial for a couple days and started again, but gave them to her in the morning, hoping to not have the sleep disruptions.  Daddy and  Mommy were tired! Cody actually started saying "Brynnie woke me up!" and acting all mad in the morning. LOL (Talk about drama...) She did well with it, although we did continue to see an increase in reflux.  She was good for a few days, then started pooping like crazy!  She was going through a number of outfits a day and literally having 7 dirty diapers a day.  Yesterday, I decided to pull peaches for now, trying to figure out what the diaper culprit is.  She had 5 dirty diapers yesterday, and so far only 1 today!!!!  BUT, to complicate things even more, I have an appt for her this afternoon to check her ears, as I'm pretty sure she has an ear infection going on...she's been coughing the last couple days, a runny nose, and has been fussy and tugging at her ears today.  UGH.

Yesterday was an AMAZING day, other than the kids having colds.  Last week, we got a letter from our pediatrician saying as of June, he will not longer be at our clinic.  Great.  Start back at square 1, explaining/teaching the dr about FPIES, giving a total history of Brynn and her reactions etc.  I was so upset.  But, needing to move forward, I called the clinic to see if a couple of the other dr's that I've had positive interactions with to see if they were taking new patients.  Nope, they weren't.  Crap. So, being the researcher I am (lol), I started looking at dr's profiles through the clinic's website and came across one that I found extremely interesting.  This is what it said:  Special Clinical Interests: Newborn care, breastfeeding, asthma, allergies, developmental screening and children with chronic illnesses.  WOW, is this for real?  This could potentially be a blessing in disguise.  If she truly is interested in allergies AND chronic illnesses, maybe she would research some on her own...maybe I won't have to fight for her to believe that FPIES is real...maybe she will HELP us!!!!  Now, as exciting as this was, there's more.  A while later, Danny called, saying that the GI specialist called to ask if we wanted to move B's appt to an earlier date.  YES YES YES!! We do! I've been trying to get an earlier appt for weeks!

And just wait, it gets better.  =)  A fellow FPIES mom informed us of a research study being done in New Jersey, at The Pediatric Center for Rare and Complex Diseases. This mom gave us the info to get in touch with the Dr, and stated she was only taking 150 patients for the study.  She sees 1 FPIES patient per week.  We jumped at the opportunity and I called right away.  I actually got through right away (many other parents had issues getting through to actually talk to someone)--I'm pretty sure I just happened to catch her in between phone calls.  I talked to Dr J's assistant for about 45 minutes.  She was great and we discussed setting up an appt and I needed to check for flights and call back.  After checking for flights/hotel, I called back and couldn't get through.  I called for 2 weeks straight, about 10 times each day and got sent to voicemail every time.  Yesterday, I called again, expecting vm...but someone answered!!  She said the assistant I had spoken to was not in and she would take a message...I told her I had already left numerous and I just wanted to confirm our appt.  So she said she would walk up to that area and check it out.  So, to add to my awesome day yesterday, we are set up for an appt in New Jersey on March 3rd.  YAY!! I'm really hoping we can get some insight on what exactly is going on in Brynn's little body and to see what other info she has to offer.  The mom who has already gone, is getting some really great info.  Dr J may be able to tell us if B's anywhere NEAR growing out of this, what her possible trigger foods will be, and if there are any other underlying issues going on.  How amazing would it be to have some answers!  She also prescribed a probiotic for the other little boy, trying to balance things out within his body. 

So we have a very busy March!! March 2-4: NJ, March 18: GI specialist  March 29: B's 1 year appt.  Hoping for the best!!