Goals for the New Year

With a newborn and toddler in the house one day just seems to fade into another right now. When night comes I am happy to have made it through the day with everyone fed and clean. Household chores, errands and other things fall to the wayside. I like things organized and put together but since having a child with PI and well, now two, I have learnt to pick my battles.

Any free time I have right now is spent trying to figure out our next move for Hayls and Heath who are both at different places on their PI journey. This year our goal for Hayls is to find one more food she can eat. If we come across more, yay for us, but our goal is just one. Our goal for Heath right now is to get him on a PPI medication that is corn free. We tried to wean him off totally but the poor little guy was in pain and stopped eating and sleeping. He started screaming a lot which was unlike him. However his rash started clearing and his poops went down to twice a day with just a little mucus. Once we put the dose back up he stopped screaming and went back to eat and sleeping ok. The rash is back and he scratches and digs at it. The uncomfortable constant spitting up is there and the nasal congestion. Hence a lot of my free time is spent figuring out how to compound a med for him and a lot of back and forth with different Dr's.

We are still in the process of trying to find an allergist who is knowledgeable about the whole EGID, PI, FPIES spectrum of disorders and our Ped. is very good at supporting us and trying to help us figure things out, but she too has limited knowledge of these disorders and is learning with us as we go. In essence we are still the ones steering the ship and searching for a Dr. who would take over.

Hayls did patch testing back in mid December and had 15 out of 16 positives. It is weird to say but I was relieved to finally have a test show something positive. We finally had an answer to something but no answers at the same time. The allergist who did the testing wasn't very helpful because once again he didn't seem to know much about PI just how to administer the test.

Finally we had a great Christmas in Florida with my family, Kenny's family and friends. I was good to catch up with everyone and the kids loved having everyone around. Especially Heath who just loves to chat.

We look forward to the year ahead to gain some answers but more so to see the kids grow and their little personalities blossom in spite of our challenges.

Thank you to everyone who offered us encouragement and support last year, hopefully this year proves to be fruitful on our PI journey.