I know this is very late…it’s Tuesday night and we were done with our 2 weeks at NJH on Friday, 4 days ago now. I was just too busy packing Friday night and spent all day Saturday traveling. If I was alone, I could have sat in the airport and posted then, but by the time we lugged all our stuff to be checked, then through security, we needed to eat something and Ava was not about to let me rest. She kept me moving until the last second before we got on the plane.
Truthfully, there really isn’t much to be said about our last day. We didn’t do any food challenges. Again, it was remarkable to see the rapid changes in Ava’s skin. She looked pretty clear before we left for the hospital that morning, but as soon as she saw the doctors coming, she would flare up! Her skin was changing minute to minute. It is quite obvious that her eczema is greatly affected by her emotions. It’s also clear that food challenges are so hard to decipher when the skin is changing so frequently. So on Friday, we really just waited to be seen by Dr. Rabinovitch, made sure we had all of our papers and supplies and said goodbye.
In the end, I think we made the right choice. I now know how to care for Ava when she has a flare up, so her skin will hopefully never be as dry, inflamed and broken again. It is so helpful to know the most effective wet wrapping techniques and how many baths she needs per day depending on the state of her skin. We left with having to avoid more foods than I was hoping we would. The final list is: gluten, dairy, eggs, all nuts, sesame and garlic. I am still planning on healing Ava from the inside out and will attempt the GAPS diet.
Another important factor that I want to address is the emotional aspect of the trip. In no way do I want to discourage anyone from going to NJH if your child needs it. I do just want to stress how important I think it is for you to have someone go with you! I was so exhausted by the time it was all over and would have greatly appreciated some help. The family we stayed with was wonderful, but they couldn’t come with me to the hospital. They still had to go on with their daily lives of work, school, appointments…Of course, it could have been coincidental, but yesterday I suffered the worst migraine of my life so far. Luckily, I usually only get one or two a year, but when I do get one, it is bad. I was unable to speak or even think and I am so grateful for the friends I have nearby who came and literally picked me up off the floor, where I lay sobbing, and took control of my four children and got me to the ER so I could get some fluid and medicine in me. It’s hard to pinpoint the cause of migraines, but stress can contribute.
So, in the end, we got some answers, but our journey still continues. I hope to see Ava flare up a lot less. Traveling caused quite a flare up and then our ordeal yesterday also had her looking pretty rough this morning. Again, I know how to calm it down now, and she was looking much better by bedtime. Ava is still very young, which can make things even more unclear when it comes to tests and food challenges, we need to be super strict about what she eats, so that we can hopefully clearly identify what foods are irritating her. If you are interested and wondering if the GAPS diet will actually help, stay tuned, as I plan to document this as well!
Thanks for reading!