Still no seizures...

Well, still no seizures since yesterday at 5pm. This is a good morning, I just wanted to update you all.

THE SEIZURES HAVE STOPPED...

I don't know what to say I am too excited right now, but I had to let everyone know. The man I spoke to from the support group gave me some information about his son that led me to a new medicine. I've been begging the doctors for days to give her Tegratol and they finally ok'd it today and we gave it to her at 5 o'clock this evening and she has not had a seizure since. I had a feeling it would work. They said it wouldn't work right away, but it has. This has been the best night ever. Thank you for all your prayers and support. This is a great day! Love, Amber

Probably Wondering What's New...?

Well, I guess we're not out of the woods on this Pelizeus-Merbaucher Disease. In fact her neurologist thinks it's for sure and he says he hopes to be proven wrong. I have been on the phone with people across the country and way out of my intelligence bracket trying to find some answers on where to go from here. And this is what I have come up with at this point. Although we have not had a diagnostic test, Sydney has all the symptoms of PMD. I will have more tests done, but this is such a rare disease there isn't too much information. There are 250 cases in the USA and about 2,000 known worldwide. At this point we are trying to treat her symptoms. That is more important that putting a label on her. We have got to stop these seizures. Then, we need to get her nutrition going as strong as her body will allow. We need her to stop vomiting. These thing are on the top of our priority list right now. I have found a family support group that has been able to answer some big questions for me and point me in some direction. This will be a saving grace. There is "one" Doctor who specializes in this rare disease and other similar diseases. I talked to him last week. Thank you everyone for your prayers and support. Please keep Sydney in your prayers. Love, Amber

Good News...

TEST RESULTS CAME BACK NEGATIVE for Pelizeus-Merbaucher Like disease. That is so wonderful, that was a terrible disease. So, they are checking to see if it is possible that anyone might have that disease that also had a negative test, but they don't think so. Now, we don't know what is next, but I feel hopeful. Thank you for all your prayers and your support. Life sure is just like a roller coaster. Love, Amber

Sydney loves her Daddy...

No news yet...

Well, as I expected the lab results are not in yet. I promise to let everyone know as soon as we hear any new news. We had a nerve/muscle test today and that went well. I guess her nerve and muscle response in her arms and legs seems normal. I could have told them that before the stuck her with a bunch of needles and shocked her with that cattle prod, but they are the doctors and I guess it was necessary. So, that is some news to give you. Tomorrow, we will do another barium swallow to see if there are any twists or obstructions in her upper GI. Then, the surgeon will be able to see what he's working with I guess when he has to put in her stomach feeding tube. We have the consult with the surgeon next Wednesday. Thanks again for all your prayers and support. Sydney has strung a few pretty good days together. We are not sure, but maybe her new medication is making her episodes more tolerable. She is sleeping through the night and gaining weight. We have her on a continuous drip with her feeding tube at 20-24oz a day and a higher than normal calorie intake. Her little tummy looks fuller but she's still so dainty. Her feeding tube is portable so we can take her out and about and she doesn't seem to mind the tube. I'll update you all soon... Love Amber

Back to the Hospital we go...

So, we had to go back to Dorenbecker's, today is our third day here. I just found out they have computers we can use. We had our GI appointment and then we were admitted to the hospital. Sydney really needed to eat since she weighs less now than she did on May 5th. I know it's scary. But we have now gotten her a feeding tube and she is keeping it down great so far. Her episodes are the same, horrible, but at least she is getting food in her tummy. We did a barium swallow test and found that she is getting some pooling on her vocal chords and it's going into her airway. This is not good. So, we will continue with the feeding tube in her nose for a while, which just so you know doesn't seem to bother her too much. Then, most likely we will have to put a feeding tube in her tummy. However, we will begin to practice eating and swallowing with the speech pathologist soon. Her little swallow muscles just aren't very strong right now and we expect that her brain might have something to do with all of this. We will keep trying to get her help whatever that may be. The doctors have been very good with her and with us. They say we may get to go home tomorrow for the Fourth of July but we will see how Sydney is then and they will show us how to use the feeding tube and all the equipment in the morning. Thank you everyone for your prayers and support. Love, Amber