Back from our second trip to the ER!

Jenelle's cultures were clear, and they checked her throat to find sores, so the doctor said it is a viral throat infection. Apparently he's been seeing this and its going around causing sky rocketing fevers! So, Motrin and Tylenol, and that's it!

Thanks for the continued prayers!

High fever and a trip to the ER!

Well, last night when she got home from daycare, Jenelle was running a fever of 103. I gave her Tylenol and she was fine the rest of the evening. Around 3:00 a.m., she was awake and running a fever of 100. More Tylenol and she went back to sleep. At 6:30 this morning, Jenelle had a fever of 105.3! Off to the ER we went!

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!

More Seizures & Other Emergencies!

Well we are still grinning from ear to ear with Jenelle's latest accomplishment of standing. She is still at it and is moving around pretty well these days. Unfortunately with the good stuff, Jenelle's seizures decided to show their ugly face again as well. Over the last few weeks, we've noticed an increase in Jenelle's seizures that we had hoped were due to her being sick with an ear infection. Also, in the back of my head I had wondered if with her recent weight gain of 4 pounds in a month messed up her medications a bit. A week ago I spoke with Dr. Shields about it, and he agreed it was worrisome, but wanted to watch it some more to make sure she wasn't fighting illness. Last Wednesday, Jenelle had two big seizures back to back… one lasting almost four minutes and the second over a minute (both of which are long for Jenelle.) We had the Diastat ready, but didn't use it. With these seizures, we noticed some "weird" movements again like hand twitching and such. I put in another call to Dr. Shields to find out he is out of town until the 20th. Jenelle had another nasty seizure last night going almost a minute, and she has been very healthy. We're going to keep our eye on things, but it looks like Dr. Shields may want to see her sooner than next February.

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!

Jenelle pulls herself up to stand!

Well, I wasn't expecting this day so soon... And we are thrilled! Tonight after getting home I walked in the living room to find Jenelle standing and holding onto the couch all by herself! I was shocked... And so very proud! She had this look on her face like "What do I do now?"

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!

November is National Epilepsy Awareness Month!

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:

• Childhood epilepsy currently affects more than 300,000 American children under the age of 14.
• Epilepsy may be time limited or long term. Early recognition and treatment are keys to the best possible outcome.
• The epilepsy may be associated with serious, difficult-to-treat syndromes, including infantile spasms, Lennox-Gastaut syndrome, genetically related conditions, and developmental disorders.
• Social impact in childhood is often severe, producing isolation and loss of self esteem.

Our Jenelle:

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:

• Keep calm and reassure other people who may be nearby.
• Don't hold the person down or try to stop his movements.
• Time the seizure with your watch.
• Clear the area around the person of anything hard or sharp.
• Loosen ties or anything around the neck that may make breathing difficult.
• Put something flat and soft, like a folded jacket, under the head.
• Turn him or her gently onto one side. This will help keep the airway clear. Do not try to force the mouth open with any hard implement or with fingers. It is not true that a person having a seizure can swallow his tongue. Efforts to hold the tongue down can injure teeth or jaw.
• Don't attempt artificial respiration except in the unlikely event that a person does not start breathing again after the seizure has stopped.
• Stay with the person until the seizure ends naturally.
• Be friendly and reassuring as consciousness returns.
• Offer to call a taxi, friend or relative to help the person get home if he seems confused or unable to get home by himself.

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!