Saturday, November 18, 2006
Thanks for the continued prayers!
Friday, November 17, 2006
At the ER, they ran some tests (blood, urine & an x-ray) and everything is clear. With the very high fever, they are not taking chances and gave Jenelle IV antibiotics. They assume it is "something bacterial" and we have to return to the ER tomorrow for culture results and another round of IV antibiotics (beats a night in the hospital!)
Jenelle is very fussy and crying a lot and its been hard to keep her temperature down. She is holding down fluids, which is good. I think that was the main reason they sent us home, she was hydrated, and we could keep her hydrated via g-tube. The very good news is that she has had some seizures, but none over a minute! Fortunately, we've kept those under control!
Here is a really blurry photo (from my camera phone) of Miss Jenelle and her nasty IV. She didn't like it at all! She is such a trooper!
I hope the ER isn't crowded on Saturday morning. Thanks you for prayers and get well vibes! I'll keep you posted!
Monday, November 13, 2006
In other news, we had a minor emergency after Jack's soccer game on Saturday. I accidentally pulled out Jenelle's Mic-Key button when lifting her from her stroller to the car. It was scary at first because we couldn't find it, and we've been told that her "hole" could seal up easily if the button is not replaced immediately (thus requiring a new surgery to replace it.) Unfortunately, once we found the original button, it would not go back in properly. We have an emergency catheter to use in place of the Mic-Key button when this happens, but unfortunately I didn't have the proper syringe to seal up the catheter. Luckily, we were not far from home (where the spare Mic-Key button is kept) and I was able to hold the catheter in place until we got home. It was a little painful for Miss Jenelle too, and I felt just horrible about it. That g-tube has been so wonderful for Jenelle, we sometimes forget it is there. At least we were able to fix the situation without a trip to the ER.
So, with the good comes some bad spots too. I’m almost certain that the new seizures are from Jenelle's meds being too low, however with Dr. Shields out of town, I'll wait to do anything with the meds. Jenelle is having a feeding evaluation at CHOC on Thursday to see if she qualifies for feeding therapy. Other than that, things are good with our girl! Thanks for the prayers and positive thoughts! I'll keep you posted!
Friday, November 03, 2006
Our determined little girl kept trying to stand (and cruise) for a long time, enough to let me get some photos and a short video clip. In the video, she doesn't stand quite as straight as she was when I first found her, but you get the general idea! Look out world - we're on our way to cruising! ;)
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Here are a couple of photos of her using the couch to pull up, and big brother Jack helping his sister stand tall!
Wednesday, November 01, 2006
November is National Epilepsy Awareness Month. Purple is the designated color for Epilpesy Awareness Month.
Facts about epilepsy:
- Epilepsy is one of the most common disorders of the nervous system.
- It affects people of all ages, races, and ethnic backgrounds.
- More than 2.7 million Americans of all ages are living with epilepsy.
- Every year, 181,000 Americans will develop seizures and epilepsy for the first time.
- Epilepsy can develop at any time of life, especially in early childhood and old age.
Facts about epilepsy in Children:
Well, this blog will tell you everything you need to know about our girl. I know many of you know and love her as much as we do. Three years ago, we were told that if we could not control Jenelle's seizures, she would not live past age 5. Like any parent, we vowed that day to fight this monster that threatened to take our child. The fight was long and had many ups and downs... and it continues.
Jenelle just turned 4 a week ago, and is doing better than we ever imagined after gaining significant seizure control in July 2005. She still has daily seizures, but not as many as before (20 or so a day instead of 100 or more a day.) We are very hopeful that Jenelle will have a long and active life, and we are hopeful that she will overcome this devastating condition.
Recently I read an article at the National Epilepsy Foundation website about actor Greg Grunberg (Alias and Heroes) and how his son suffers from epilepsy. The article is very interesting, and Greg really makes you understand what it is like to be a parent to a child with epilepsy. I highly recommend reading the article for a better idea on how epilepsy can affect the whole family. You can find it here.
Seizure First Aid:
Witnessing a seizure is frightening. Witnessing your child seizing is indescribable. Prior to our learning that Jenelle was having seizures, we had absolutely no experience with seizures or first aid for seizures. Now we are old pros and it is really something you just learn by fire so to speak. Often one of the common things I'm asked by many people is "What do I do if I see someone having a seizure?" The hardest thing to do is remain calm, but it is the best and first thing you should do. Make sure the person seizing is comfortable and not hurting themselves (i.e. if they are repeatedly hitting their head on concrete - move them!) Start timing the seizure and wait it out until the seizure stops naturally on its own. If the seizure goes longer than 5 minutes, call 911. And its is just as simple as that!
Here are some "Grand Mal First Aid" seizure things to do:
Links for more information:
Our Local Support Group - The Epilepsy Alliance of Orange County
National Epilepsy Foundation
More about November as National Epilepsy Awareness Month
More about our Jenelle's diagnosis - Lennox Gastaut Syndrome
Thank you for all your prayers and support for our family. I am quite passionate about educating others about epilepsy because I think talking about it will only create a better world for Jenelle as she gets older. Thank you for listening!