Well now that you have found us you area probably wondering why you are here. Maybe it is because I asked you to come and see us or maybe because it was a linked to another page. Don't know. But I hope you like what you see and what you learn.
Let me tell you a little bit about My Angel, Brittany Marie. She is 4 years old currently. She was born in 1994, in October. She was born 5 weeks before her due date and by C-section.
When she was born the doctors didn't know what was wrong. The hospital that she was born at wanted to transfer her to another hospital that could treat her better then they could. So they put it out and the hospital that responded was The Johns Hopkins Childrens Hospital. We couldn't have asked for a better place.
She was transfered that afternoon to the NICU, neonatal intensive care unit. There she was assigned a nurse, Danielle. The NICU has round the clock care. Many on staff to help take care of the little ones. There they also did many tests. I wouldn't be able to describe them all, but she had x-rays done, a spinal tap done, sonograms of the brain, and many others.
Most of the test results came back normal. Except one, a major one. The spinal tap. The results were nothing that I have ever heard before. (You know all the doctor language) She has something called, Congential CMV. CMV is short for cytomeglovirus. When we were told this we had no clue what it was or even where it came from. All we knew was that we wanted to take her home.
The doctors explained to us a spectrum of things that could happen to her, and some of them have. The lower end of the spectrum is that she could just have a mild learning disablity. The higher end of the spectrum could be that she does nothing for herself, examples... not feed herself, not walk, not crawl, not talk, etc... We were also told that she could have seizures. Which she does now.
We took her home 2 weeks after she was admitted to johns Hopkins. She was a good baby. Did everything she was suposed to do. When she was about 5 months old she began having seizures. We went back to Johns Hopkins and we were told to put her on medication. So we put her on sub-q injections of ACTH. This is a hormone that produces the natural steroids in the body. This in turn help the seizures that she was having, but the problem with this medication is that it is a short term medication. She was on it for 6 weeks. We did see an improvement, but with in 3 months she was having more problems with seizures. So the doctors decided to try a different type of medication, this time it was klonopin.
The klonopin lasted quite a while, but we started seeing her seizures get worse and more intense. So after talking about it with the doctor we came off of the klonopin. About 5 months later she started having a different type of seizure. This time we put her on pheonbarbital, but this did not seem to help either.
Finally, after about 8 months of pheonbarbital we were told about a special diet that helps kids with seizures. So we were ready to try anything. This diet is strict. It is called the Ketogenic Diet. This diet is a mixture of high fat, low carbohydrates, and little to no sugar. All the food is weighed out into portions set for the childs weight, hieght, and age.
Brittany has been on this diet since Feburary of 1997 and since then one of the types of seizures she had has not even showed up. The other types of seizures she has are very far and few between. Now they only come mostly when it is high allergy season or when she is sick.
We are grateful for the diet and all the help that the diet has done for Brittany. She is totally a different child. She is accomplishing more and more everyday.
She has also started to go to school. She goes for half days 5 days a week. She even goes during the summer. She loves the bus and the ride to school in her kid kart (wheelchair). She gets physical therapy, speech therapy, ocupational therapy, music, and one on one with her teacher. I am glad to have the services there for her. I am grateful to all the teachers and therapists that she has had and will have in the coming years.
Coming in the year 2000 Brittany will be starting school full time. She will have everything that she has now and more. She will be in a class that is called primary. She will remain in the same school that she has been in that is something that will not change.
Also this year Brittany has found a new friend. Not so new but in this case he will be a part of her life from now until the end of time. She has a stepfather that loves her for her and does all he can for her.
In May, Brittany will become a big sister. Her stepfather and I are expecting a baby then. I know that she will love having a sibling around. She doesn't quite understand just yet but I know in time and when the baby gets here she will be happy.
Well Brittany now has a little brother. he came a little early but he is heathly. His name is Carter Jauquim. She still doesn't quite understand what has been going on but she will in time. The one thing that she does is laugh when he cries. Which we all think is funny and cute. There is pictures of the 2 of them in the pages that follow. I hope that you enjoy.
Brittany will be starting her school full time this fall. I know that she can't wait. She loves school and we love what they have been doing with her. She has started to roll around more, which is her way of mobility. She is starting to bear weight more and takes steps with support. Which is a wonderful.
Below there has been another link added. This one is for a radio station in Baltimore that does a GREAT JOB every year for the Johns Hopkins Children Center. They raise money for them and every year there goal is higher then the previous. They do a great job. We love you JO JO and KENNY!
I am going to find the web site just for the telethon. When I do I will post it so everyone can see what a great job everyone in Baltimore does for the children at Johns Hopkins.
Well that is all the things about Brittany for now. Keep returning to the page. I will be updating it regularly. Here are some links about what Brittany actually has and information about the Ketogenic diet.
Thanks for coming and continue on to the next page to see more pictures of her and find out more about me.
Information Links: Go and check them out
Johns Hopkins Epilesy Center
The Ketogenic Option
The Ketogenic Web Ring
Diet Resources
About the movie : First Do No Harm
The radio station MIX 106.5
