Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Wednesday, May 25, 2011

Two Year Check Up

Monday Kara had her two year check up. I'm so happy to announce and could shout from the roof tops that WE ARE NO LONGER ON WEIGHT OR HEIGH WATCH! Kara is about 24 1/2 pounds and 33 inches long. She is stable in the low twentys for percentile on both her height and weight. She's looking great! We no longer have to have a monthly weight check (don't let us kid you, we never had a specific appointment for this, as we've been averaging a doctor appointment at least once every other week lately!) but will do a six month follow up instead! This is wonderful news! Kara is still getting at least two six ounce bottles of Neocate a day, some days more and if she's not feeling well it may be four or five bottles. Neocate is still a large part of her diet!

Kara's skin is the same as it's been - with her recent green bean reaction it's in bad shape. This is nothing new and we have quite the cocktail to help get it under control. The doctor also mentioned her cough and that especially with this time of year, we could be nebbing her with the Pulmicort daily to try and help her symptoms and use the Albuterol as needed.

Kara needs to see a dentist now. With all the reflux and vomiting that's gone on, it was decided to get her in sooner than later, before we have bigger problems on our hands. I wasn't surprised by this as Dr. S, our GI doctor brought this to my attention at our last appointment with her. Kara now has an appointment to see a pediatric dentist tomorrow morning. Her teeth are opaque looking so I'm a little nervous about what's going to happen with this. She offered to refer us to Gillette again but I opted for a clinic a little more local. If she has to have any procedures done, we'll have to go to Gillette or the U but we'll take that as it comes.

Other than that, it was a great appointment. Kara talked quite a bit, and acted her normal two year old self. She is finally on track developmentally since she just started talking. I'm already missing those days when she couldn't talk!!! It's almost more difficult having an FPIES child who CAN talk - makes me feel that much more helpless when she's having problems or crying "No doctor!" in the waiting room at her appointments! I briefed her on what's happening in the next few weeks with all of her appointments and we were on our way. It's a very busy week of appointments, prepping us for a very busy next few weeks coming up!

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