The Battlefield

Some girls dream of weddings. I never did I always dreamt of having a baby. So when that day finally came I was exstatic. We had a difficult labour with my baby being sent to the NICU but we went home with a perfect baby and life was great for the first 2 weeks. I had taken care of a lot of babies since I was 10 even premies. I had more baby and child experience than all my friends put together. So if anyone could take care of their first kid with no problems it was me.....

Then all hell slowly broke loose............

Enter the battlefield: only I had no clue what was coming and no clue I was in a battlefield.

I never thought I would have a child with medical issues far less a rare one which there is no test to diagnose and one that most Drs are totally clueless to and have no clue how to treat.

The crying started, the multiple mucusy diarrhea, the reflux and all the other symptoms. I searched and found a formula with a different whey/casein ratio. I thought this may help. It didn't. I found reflux and her Pediatrician agreed. We started the medication dance. Then we did the tests and the GI said no reflux, but we tried one last med and it worked so it was GERD. Then enter food allergies/intolerances and the battlefield became a mess.

The battles with the Drs had me in tears many times. Since then the battles in my battlefield are too many to count. Seven Drs and counting and numerous battles with each of them. Some of them have been banished from the fields, one allowed back after redeeming himself and one fights by my side most of the time. She was unsure at first but now urges me forward at during the times I want to retreat.

We now stand at the cross roads: Hayls only has only the amino acid based formula and carrots. Ever day tears are shed by her, tears crying for "food,eat". We need more soldiers on our side and we are in search.......today we lost one we thought was on our side, but clearly they were not. This battle today had me in tears and angry that someone who is supposed to help their patient instead turned their back due to an over sized ego. I cannot describe how it feels....... if you have a sick child and have to fight to get them the help they deserve and have Drs tell you no.......only then will you understand.

Everything the Drs told us we didn't need we did.......the special formula......the medication.......the need to take food trails slow......and many other things

They told us she would out grow it by 4 months, then 6 months, then 12 months but we have reached almost 2 years and there is no sign of the problems disappearing. Now they are telling us "if" she does out grow it it won't be till she is entering her teens.......

The battle continues as we search for soldiers to fight not only one battle but now two battles on my one little battlefield..............