Wednesday 22 October 2014

Cheriee and Ashlee's Story




We where so excited when our youngest daughter Ashlee was born. She seemed absolutely perfect when she was born, except she had a red dot on her wrist. Dr.'s said it was eczema. So we didn't worry about it. The next day at 2 days old she had gotten another dot on her leg. So we didn't worry. But when she was 4 days old she woke up with these yellow pus filled blisters all over her feet. legs, hands and arms.... it was horrifying. We took her to our local hospital. They did absolutely nothing. They said they didn't no what it was or what to do, and to go to our family Dr. So we did. Saw one dr there she didn't no so she brought another dr in. He didn't no either. So they refered us to another paediatrician. He was unsure as well... by this time we are scared and frustrated. But this dr sent pictures of her to Pittsburgh children's hospital.



Well that paediatrician called himself at 7:30pm that night. All he told us is to be at children's dermatology in the morning. We where so scared and wondering what was wrong with our baby. Dermatology automatically said they thought IP. So at 5 days old they did a skin biopsy. It was horrible. I had to hold her for it too. A couple days later they got the results and confirmed it. It was IP


Well i have to older kids as well. A daughter who is 17 and a son who is 13. I thought it was bad when my son had colic.... we poor Ashlee when she had her blisters, it was worse than colic. The thing was, drs couldn't tell me if they where painful or not. I think they where. All Ashlee did was scream. It was like she wanted to be held, but when you held her she would still scream. It was so scary. Then having to be careful so the blisters didn't pop. I thought i had a good friend but found out she wasn't a friend at all. She wouldn't even see my baby or me because she thought it was contagious. I told her it wasn't. Plus if it was don't you think I'd have it too. Well needless to say. I stopped talking to her. Well the month went by. Things were getting easier to handle. Around a month old we saw opthamology . Now I'm use to blood guts etc... but when things happen to your kid is so different. I had to hold her while they numbed her eyes then i think put like a mirror or something in behind her eye ball i think. I was trying not to watch much. They said everything looked good... oh thank god




As the months past she was still had her blisters and some swirl marks. Months down the road they wanted genetic testing done. That confirmed IP too. She then had a brain MRI... they said everything looked good but has white matter on her brain and narrowing blood vessels. But they are not worried about it because it does not seem to be effecting her. She then had what they called eye surgery. Besides being far sided everything was good.


As of today she is 2 1/2 yrs old. She is doing great. She gets a few dots/blisters every now and then. Also has faint swirl marks. She is heat intolerant. She has stomach problems to where she has never had a formed stool. She is allergic to milk and soy to. She has some crazy hair and hair loss. She has 2 different teacher's that both come to our house once a week to help her with speech and learning. She is extremely smart though. Ash has problems with her nails and also her bottom teeth are peg shaped.








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