Andrea's story part 3

 So we move to a very small town in Northwestern Pennsylvania. We have 1 pediatric practice in the town that we live in. It wasn't very hard for us to find a doctor. The only problem is that the Dr that we did have left the practice and moved away. Bringing in another doctor in to replace her.

The Dr before the new one sent Andrea to Pittsburgh Children's hospital. They thought that Andrea had a form of dwarfism called Juene's Syndrome.  I run home to do a Google search. I thought that they completely lost their minds. Mind you at this time Andrea is 3 and they did no x-rays to confirm their diagnosis. They just had a hunch. Let me just say that I was not impressed.

 At Andrea's 4 year old check up I brought up my opinions to her new pediatrician. I told him I wasn't driving anywhere until they could send us to someone that knew what they were talking about. At this time I thought our best optionof getting  a diagnosis was taking Andrea all the way to Delaware to see Dr. Bober. If he and his team couldn't figure it out chances were no one was going to be able to. Andrea's ped. agreed with us. So I came home and made an appointment for her. Our Ped. appointment was in January and we couldn't get in to see Dr. Bober until the end of August.

August came and a girlfriend of mine, Andrea,and I packed up the car for an eight hour drive to see Dr. Bober and the team. Along with Dr. McKenzie. They could not schedule our appointments on the same day therefore, we 2 nights at the Ronald McDonald house. Which I have to say is extremely awesome!

This picture is from Dr. McKenzie's office. We waited a very long time to see him. He thought Andrea had Hypo. He would soon be surprised.










This is a petting zoo. We had a great time because it was family night so admission was only A dollar.

We also went to the Rose Garden's


The next day would be our appointment with Dr. Bober where we were  hoping to get some much needed answers. ........

Andrea's story Part 2

    Let see where did we leave off. Oh yes my mom passing away. Well I went home to make arrangements for my mom. I then rode in the back of my Uncle's semi truck to the Toledo,Ohio because Bill couldn't stay with me the whole time. He had to come home and go back to work. I remember my Uncle dropping Mike and I off at a truck stop to meet Bill. From there we went to the hospital to pick up Andrea. I remember being so tired from the ride , then going to the hospital and loading up the car with the things that Andrea had accumulated during her 13 week stay.  

We get this beautiful little thing home. All 4 pounds 5 ounces of her. We start to settle in and she has this horrible bout with colic. It so terrible! The only person  she would fall asleep for was Bill. For some reason as soon as she laid on his chest she would be out like a light.

 At this time we were seeing a pulmonologist for Andrea because of her lung disease at birth. Andrea was always so tiny but had a huge head. When I say huge I don't mean like an achon head. Her head was very long. She had a sever frontal bossing. Her tissue was extremely soft and from being positioned side to side on her head caused it to shape like that. This is one of the side effects from being so premature.

   At our 13 month pulmonology appointment  they notice that Andrea isn't quite growing like she should. Her hand are extremely tiny. The pulmonoligist suggests that we take Andrea to see a geneticist. So, I get Andrea in to see this doctor which took me forever. That is when the doctor brings up Andrea has a form of dwarfsim. He was thinking that she had either Achondroplasia or Hypochondrasplasia.. He then suggested that Andrea have a genetic blood test to check for both.  Andrea had the test done and she tested negative for both kinds of dwarfism. They did say that the gene in the blood test only showed up 70% of the time and that it was still a possibility that she could have Hypo. So, we then have a full skeletal x-ray done and had it sent to Cedars Sini to be read by the dwarfism clinic there. It took  a very long time for them to get back to us and when we did receive the report there was nothing in the report. They couldn't tell what she kind of short stature she had.

 In the meantime due to our job situation we had to make a move to a different location.

 Now it was time to find a whole new set of doctors...........