Molly's 10th Birthday Party

Here are the other pictures that I promised of Molly's birthday party. Bob did not realize that he took all the pictures in black and white. As you can see she really got a lot of presents and had a great time. She really enjoyed herself.


 

Phillips hospital stay June 2006

This whole section is for our Pippy. Phillip this is the story of how you were diagnosed with JRA. One monday morning you woke up with a very high fever 102.7 and a rash. I called the Dr and they said it is a virus it will pass. The fever lasted for 3 days and went up to 104.2. I took you to patiend first. They advised that it is a virus it will pass. The fever continued. I took you to your pediatrician. We had to see a new Dr because she was not in. She advised the same thing.. it is a viris it will pass. The fever stayed for over a week. I took you to CHKD emergency room your temp was now 105 they advised that it was a virus and it would pass. The temperature and rash lasted for 14 days. You went back to the Dr. This time you were able to see your pediatrician. SHe was very concerned that the fever had stayed so long. She ordered lab work and x-rays. The x-rays showed that you had some fluid in your lungs and your lab work was abnormal. The Dr had me bring you back in and they gave you an antibiotic shot in your leg. The next day I noticed that you were not using your leg - so I thought. Come to find out it was your arm you were not using- you were trying to use your leg instead and that made it look like you were limping. We went back to the Dr and she was very concerned. She had no idea what it could be. Your symptoms fell under a lot of diseases but you did not have enough symptoms for any one disease. She sent us to CHKD for more blood work and x-rays. The X-rays showed fluid on your elbow. The Dr's performed a tap on your elbow and took fluid off your joint. The fluid looked good but they wanted to perform more test. Your blood work came back abnormal again and they decided to admit you. Daddy and I were very concerned. We spent the whole night in the emergency room because they did not have have a bed for you. At 3am we finally got you to a room. They did not know what was wrong with you but started antibiotics and scheduled to have surgery on your joint to remove the fluid. The antibiotics and surger did not relieve you of your symptoms so the Dr's started calling in more Dr's and tried to figure out what was wrong with you. Below are some pictures of you the day before you went into the hospital. Your fever would only come at night and in the early morning during the day you were fine. Later we would find out that this is common with JRA.

 

Phillips hospital stay June 2006

The Dr's gave you antibiotics and tylenol and the fevers still continued, the rash still came back and you still didn't want to use your arm. We were very scared. It was very frightening going day to day and not knowing what was wrong with you. Every day a different Dr would come in and say the he/she was a new specialist that was working on your case. You ended up with 5 specialist, 3 residents, 3 pediatricians and a student all working together to find out what was wrong with you. None of the Dr's had a definate answer. They were all leaning toward Juvenile Rheumatoid Authritis but none of them could say for sure. They advised that time would be the only way we could tell what the disease was. Everytime they would think that you were cured you would get another fever. The day we left the hospital we had an appointment with Dr Gabriel your Rheumatologist. You left the hospital Friday and had a fever by Monday. Dr Gabriel decided that he would diagnose with JRA. You started all of your medication on Wednesday. It was very fast. I had to learn how to give you a shot. That was scary. We both made it through though! Here are pictures of your first night in the hospital. You watched Nemo the whole time you were there.


 

Phillips hospital stay June 2006

During your stay we found out that you were allergic to red dye. I never let you have anything with red dye in it because I didn't want it to stain the carpet or your clothes, silly me. Almost all the medicine that the nurses had given you had red dye in it. Thanks to Michelle, we were able to figure out that the benedryl had red dye in it too. It was the one medication that they continued to give you after they found out you were allergic to red dye. They didn't think that it had red dye in it because it was purple. After we had all your medication changed to dye free and all your meals changed so you didn't have red dye in your juice or jello, your rash went away and you stopped vomiting. You can see how pale you look in the pictures below.


 

Phillips hospital stay June 2006

 

Phillips hospital stay June 2006

You had a lot of visitors! The staff also had a dog come and see you. You loved seeing the dog. You missed your dogs so much! The dog was gentle enought that you were able to feed him. The staff also brought toys and a red wagon that we wheeled you around in. We would take you for walks in the hall, outside and to the playroom. You could not walk because you had IV's in your feet. Your arms were both wrapped because of your surgery and your IV's. You were very angry that you could not move around and hold things. By the end of the week you had been stuckc with a needle 27 times, 2 operations, a MRI, 5 x-rays, 1 Echocardiogram, a bone marrow aspiration and multiple blood tests. All of these test came back negative which lead the docotors more toward Juvenile Rheumatoid Arthritis. It was very exhausting and you were very strong through it all. You always had a smile for the nurses and doctors that would come in and see you. You blew the nurses kisses everyday! Your brother and sister came to visit you as well. 

Phillips hospital stay June 2006

After a week of testing and more doctor appointments when we were home, the doctors decided that you have Juvenile Rheumatoid Authritis. Although it is not curable it is treatible. You take 6 different types of medicine. Two steroids, one is a shot, 2 different types of vitamins, zyrtec for the rash & naprosene for the fever. You were a little cranky at first but you have learned to adjust. The last Dr appointment you were at the Dr said that if you went another month without a fever he would start to take you off of one of the steroids. Here is some pictures of you and daddy on the last day you were in the hospital. We love you very much and know that you are strong enough to get through this!