Friday, December 29, 2006

Photos of Jenelle's Christmas!

Here are a few photos I took of Jenelle on Christmas Eve next to the tree. They are a little dark because I didn't use a flash. She was so sweet just sitting there all pretty looking at the tree. Then she decided to try to bite the Christmas Tree lights! YIKES!

Here we have Jack and Jenelle in their Christmas PJs. Jack is hamming it up of course!

Jenelle and one of her Christmas toys - the Musical Garden by Lamaze. She loves to bite the flowers. She is really getting into that "oral" phase of development! And of course, using her mouth is one way to avoid using her hands!

Jenelle at Christmas dinner - love the curls!

Thursday, December 21, 2006

Monday, December 18, 2006

12/18 Update on Jenelle

Well, I just realized that my last update about Jenelle was exactly a month ago today. As always, no news is good news but as an added excuse - I've been very busy working on a jury trial in Los Angeles, so there was literally no time to update... and thankfully nothing urgent to update about!

Jenelle's IEP (Individual Education Plan meeting) went very well on November 30, and all of her services remain in place. Her teachers and therapists have been very excited with all of her recent progress, and Jenelle met many of her goals from her last IEP. Some of her goals were modified to accommodate her progress and we added a couple as well. Her teachers say that Jenelle is fun to watch, and that she has an adorable personality. But of course! ;)

On December 1, Jenelle had an appointment with her ophthalmologist and to have her eyes dilated. I had been hoping for good news on her vision because we honestly feel that Jenelle is seeing better these days, however her ophthalmologist disagrees. He believes that Jenelle has made very little improvement on her "tracking" and that her eye movement and "tracking" is actually to sound rather than visual sight. He said this can happen as cortically blind kids get older because they adapt better to finding their way through sound. Again, her eyes are physically fine, but he believes the vision loss is due to the connections in the brain. He agreed she was more alert so that is something. I suppose we can agree to disagree on the "sight improvement" and hopefully at her next appointment in a year things will be different.

While I was commuting to Los Angeles during trial, poor Brett was playing the role of single Dad. I asked him after his first day it went well getting Jenelle to school, and Brett replied that she was having a "bad hair day" because "Daddy doesn't do pigtails!" On Thursday December 6 as I was leaving at 5:50 a.m. to catch the train, I went to kiss Jenelle goodbye and found that she had vomited in her bed. I woke Brett to let him deal with it and ran to leave for my train. Jenelle had been coughing when I woke an hour earlier, so I just figured it was a fluke. Turns out Jenelle had the stomach flu and vomited 5 more times that day. Daddy took very good care of her and she rewarded him by passing on her tummy flu as Brett was sick a few days later. No fun at our home! The good news is that with all that vomiting (and missed seizure meds), Jenelle's seizures did not increase! She is completely fine now as is her Daddy.

Santa and the Grandparents are ready to deliver some exciting toys for Jenelle in a few days. Thankfully we are all well (knock on wood) and we hope you and your family enjoy the coming holidays. I'll keep you posted!

Saturday, November 18, 2006

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!

Friday, November 17, 2006

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!

Monday, November 13, 2006

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!

Friday, November 03, 2006

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! ;)

Photo Sharing - Upload Video - Video Sharing - Share Photos

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!

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!

Tuesday, October 31, 2006

Happy Halloween!

On Sunday we went Trick or Treating at Disneyland. The kids had a great time.

Here we have Buzz Lightyear & Jesse from Toy Story 2!

Jenelle, cousin Trevor (the Red Power Ranger) and Jack.

Jenelle and Jesse from Toy Story 2.

Jack with his new purchase - the "Big Woody" he's been wanting. He earned enough stickers on his behavior chart to get it, and paid with money from his Piggy Bank - $27 in quarters! He sleeps with it every night!

Have a Happy & Safe Halloween!

Tuesday, October 24, 2006

Jenelle and her balloons!

Last night when I got home from work, I had promised Jack that we were going to "pop" Jenelle's balloons that were deflated and left over from her birthday party. However, when I got home, I found Jenelle playing with the balloons, rolling around in them, leaning on them - she even popped one but didn't cry! It was amazing - Brett said she had been like that for an hour at least. It was like she really enjoyed playing in them! I took some photos and a video. I didn't have the heart to pop them after witnessing her playing with them. It was so special. I hope you enjoy!

Monday, October 23, 2006

The update on our new 4 year old!

Jenelle was sick with a fever last Wednesday, and that turned out to be something "viral" so we didn't start Antibiotics. On Thursday evening she broke out in a rash that had us worried that we'd have to cancel her birthday, but as it turns out, the rash was not contagious and most likely a reaction to having our carpets cleaned earlier in the week. Thank goodness too as I was worried it was Fifth's Disease, which is very contagious! When we saw the doctor on Friday for the rash, she had a double ear infection so we started anti-biotics and she's been doing well ever since! Jenelle is weighing 36 1/2 pounds (that is a 4 pound increase since our last appointment with her GI doctor in September) and she is 39 1/2 inches long. Believe me, I can feel every one of those extra pounds when lifting her! Ugh!

We had a small party with family and close friends on Sunday for Jenelle and she really seemed to enjoy everyone. It is nice when people who haven't seen her for a while tell you all the different ways she has improved. Jenelle is "getting around" on her own these days, but it isn't what you would call crawling. Her personality is showing now and she is quite a people person. Last week we met with her Regional Center social worker, and Jenelle made it all the way across the room to put her chin on the social worker's knee. It was definitely a first, and a very good sign that she is becoming more social.

Big Brother Jack is enjoying school and loves Kindergarten. Today starts "Red Ribbon Week" where the kids are learning "Just say NO" to drugs. While waiting in car line this morning there was a big red ribbon around the tree outside so Jack asked me what Red Ribbon week was for, and I told him. He then said, "But Mommy, Jenelle takes drugs!" So I had to explain that when used properly, drugs were good and they keep Jenelle from having seizures, but that it isn't good to use drugs when they aren't needed. I think he got the idea, and hope he doesn't tell his teacher he has a druggie for a sister! That would not be fun!

We can only expect things to improve! Thanks again for the continued prayers and positive thoughts - they are working! I'll keep you posted!

Sunday, October 22, 2006

4 years old! Happy Birthday Boo!

Today is Jenelle's 4th birthday. It's strange to think that our girl is 4 years old. Part of it feels like 40 years ago, some of it like yesterday. She is not the "baby" she used to be, and yet she is still delayed and not quite a little girl.

This is Jenelle's 1st photo after her early entrance into the world. So tiny, so white. I look at my self in this photo, and I think there was a part of me, perhaps a "mommy" instinct deep down inside that knew this child was different. I like to look back on these days as days of bliss when we still didn't know anything to be wrong, but I remember and think in my heart that I knew it was different even then.

Here we are about to leave the hospital. I remember wrapping her up just before this photo and thinking she is simply beautiful. When Jack was a baby, I thought he looked like a little old man. Nothing cute about him, but of course no Mom says that. But with Jenelle, she was just a beautiful (and a little jaundice) baby.

Jack was so young when Jenelle arrived - only 22 months old. I really don't think he had a concept of what it meant to have a new baby in the house. He was happy of course. But I don't think he ever really got it.

This was the photo we used for her birth announcement.
And of course, around 10 months of age Jenelle was diagnosed with Epilepsy. Our lives changed and she has overcome so much. Today we had a small party with family, and Jenelle seemed to enjoy it. We have a 4 year old in the house!

Happy Birthday Boo!

Monday, October 16, 2006

My new favorite photo!

My talented Sister in Law snapped this photo of us at the Pumpkin Patch this weekend. Jenelle is constantly in motion, so she makes for a challenging photo subject. But catching that one "nano-second" in time... priceless!

Here are some more photos from the pumpkin patch. I took the one of Jack. We let Jenelle roll around in a hay pile... And she loved it!

Wednesday, October 11, 2006

One more photo...

Just one more photo to share from the CHOC Walk. A co-worker emailed this to me today. It almost looks like Jenelle is waving too! (click on the photo for a larger version.)

And for those that loved the last photo of Jenelle on the tram, just thought you'd get a kick to know that she was giggling the whole time!

Monday, October 09, 2006

CHOC Walk 2006!

The entire family woke at 5:00 a.m. on Sunday to participate in the Annual CHOC Walk at Disneyland to help raise funds for the local Children's Hospital. Jenelle has been a patient at CHOC 9 times in her short life, and we are very fortunate to have such wonderful facilities so close to home. My firm sponsored a team of walkers this year, so we participated with them.

Here we are somewhere near the Jungle Cruise:

Jack really enjoyed seeing the characters along the way, but was kinda bummed the rides were not open. Here he is waving to Jesse and Woody:

Jenelle's favorite part of the walk was the tram ride back to the parking garage:

A lot of teams went all out with colors and balloons. It was quite moving to see so many that were "In Memory Of" a child that had died. Along the walk, they had signs posting interesting facts about Children's Hospital. The fact that moved me the most was that the number of patients at CHOC has increased 90% since 1998. That's barely 10 years. What is happening to our children?

We were very excited to finally participate in the annual CHOC Walk. Jenelle has either been a patient in the hospital, or very ill during the last three walks. She is doing so well right now, we had to take this opportunity to participate! When we finally got home, the whole family napped for 3 hours, and we were pretty exhausted the rest of the day! It was all for a very worthy cause.

Monday, October 02, 2006

Just another great update!

Just a quick update since its been a while. I got a note from Jenelle's PT last week informing me that "Jenelle took independent steps down the hall in the gait walker without assistance". For those who aren't up with the "physical therapy speak", this means Jenelle took steps all by herself in the walker! I think she may be walking within a year! I have yet to see her do this on my own but will welcome the day. At home we've noticed Jenelle trying to walk on her knees. She is so determined, and strong!

The weaning schedule is going well from Jenelle's pump feedings at night. After the first few days, Jenelle started waking up earlier than normal because she was hungry, but now she seems to be back on track with her sleep. In case you were wondering, we are not decreasing Jenelle's formula intake with the wean, we are just giving her more ounces during the day so that she can get all of her feedings during the day instead of supplementing with the pump at night. A friend was worried that we were "starving" her and that is simply not the case. We are trying to adjust her eating to more appropriate times, and to keep her interested in trying to eat table food again.

It's hard to believe but in 20 days, our girl will be 4 years old! Now that we have seizure control, I have no doubt that she will continue to improve and develop in her own way. Thank you for your continued prayers - I'll keep you posted!

Wednesday, September 13, 2006

A New Feeding Plan

Jenelle had a follow up appointment with Dr. Idries, her G.I Doctor on Monday. As you know, Jenelle is improving in all areas and feeding is no exception, thankfully! I told Dr. Idries that we've had some improvement with oral feeding but it is coming on very slowly. Jenelle has been showing some interest in her food lately, and sometimes tries to bite the can of formula, or dish of food when placed in front of her. A good sign that she is seeking what she wants! Sometimes I find it easier to feed Jenelle if we let the dish sit in front of her on her tray before trying to spoon feed her. That way, she is more interested once she sees and smells the food! So far, its been working however she still she is not eating enough orally to keep her surviving, so we'll still be on the g-tube for a while.

The good news is that the doctor wants to "wean" Jenelle off her pump feedings via G-tube at night in order to increase her appetite during the day and help improve her eating skills. This is great news and a move towards improvement! In addition, Jenelle is still trying to sip from a cup, straw and over the weakened managed to sip well from a sports water bottle! We're on the right track to say the least!

As you know, Jenelle has been falling out of bed. Although she laughed with her first fall, she has since been injuring herself with bruises, scrapes and cuts. I spoke to the manager at "Sleep Safe" beds and she suggested we get the "Sleep Safer" model as the rail guard is 36" in height. ( I put together a letter to our doctor that included photos of Jenelle's current bed and her bruises, and this morning, Dr. Shields office called and said they will submit a request to our insurance for the "Sleep Safe" bed. Who knows how long it will take to get it, but at least we are getting started!

Jenelle started back to school last Thursday and really seems to enjoy being back in her routine. She really seems to be understanding thing more, and things are looking hopeful. Her IEP should be sometime next month, so I'll have more to report soon. Thanks for the continued prayers - I'll keep you posted!

Wednesday, September 06, 2006

Baseball Girl!

The passing of time is supposed to heal all wounds and make the pain easier. However, as much as we are used to the idea that our little girl is always going to be very different, it is hard to face the reality sometimes that we will also miss out on so much. A blatant example of this is attending a wedding this past weekend and watching the Bride walk down the aisle with her Father, and the Father/Daughter dance.

A very good friend of ours got married this weekend and instead of my usual "tearing up" during the Father/Daughter dance... I found myself wondering if it were possible that Jenelle would ever marry, and if and when that day ever happened, would I be like the Mother (played by Diane Keaton) in that movie called "The Other Sister". The Mother who thinks that their special needs child could not possibly be taken care of or loved as much as she has done her entire life. Or that her child is incapable of finding love and living a full life in that way. And then I realized the change in myself. Instead of knowing Jenelle would never have a chance at any of that - I see that I now have hope that things can be different for her, and perhaps in a way "normal."

Last night's season premier of our favorite show House had me thinking about that as well. One story line was about a man who was paralyzed who drove his wheelchair into a pool in what they thought was a suicide attempt. The wife told Dr. House, "You are the first doctor to ever give a damn about his quality of life." Boy, does that sound familiar. Dr. House of course found a cure for the man and at the end of the show. After a simple injection - the manstood up, spoke and hugged his wife. We're still looking for Dr. House. And in today's world of advancing science - I know there is hope for Jenelle.

Not much new to report these days. Jenelle starts school again tomorrow, and unfortunately has been taking some bruising from her recent falls out of bed. Last week she actually reached out to pet a friend's dog - something I never imagined would be possible. And I swear... She is so close to communicating and possibly saying that first word with meaning.

Last night, the kids were with Brett's Aunt while we went to an Angels game. When we picked them up, Aunt Nicki informed me that Jenelle said loudly "Mum" and Jack told Nicki that Jenelle was calling for me. Sometimes Jack likes to make up things he thinks Jenelle is saying. Maybe he does understand her in some way? I sure hope so!

The photo above is the first I've ever caught of Jenelle wearing a baseball hat. Usually they do not fit or she pulls them off before the camera can catch her. The hat is from Grandma & Grandpa as a souvenir from their trip to the Little League World Series. Isn't she sweet? And so big!

I'll keep you posted!

Thursday, August 31, 2006

Big Brother Jack goes to Kindergarten!

Big Brother Jack started Kindergarten this morning! This may be the first morning we didn't have a problem telling Jack to get up and get dressed. As you can see, he was thrilled!

Brett, Jack & Mom at Jack's new desk. Two kids from summer camp were in his class, so he was very excited to see his old friends.

Here is Jack posing next to the new paint in his room. I think he may be right... It looks a lot like "Dodger Blue!" Yikes!

And of course Little Sister Jenelle is always looking very cute!

I know all of you "organization freaks" will love this... My idea to help Jack know what to wear each day of the week! Pretty organized, huh?

Jenelle is doing well but keeps falling out of bed! I really need to get going on that request for the Sleep Safe Bed! Argh!

Friday, August 25, 2006

Well, it finally happened!

Jenelle fell out of her bed this morning. It was barely a year ago when we put her into the "Big Girl" bed. Now that she is sitting up, I knew this was close to happening!

I was brushing my teeth and Brett heard a thud. We peeked into her room and found her on the floor - laughing! At least she didn't hurt herself, but this means we need to get working on insurance to get a new bed. I am liking the sleep safe beds I've seen in magazines. Click here for their website.

Nothing else new to report. Our little girl is doing well other than her big adventure this morning. Have a great weekend!

Wednesday, August 16, 2006

Jenelle beat up a 1 year old!

Can you believe I'm actually excited to tell you that Jenelle "beat up" a one year old? Well, "beat up" is a bit of an exaggeration - in realtiy, Jenelle fought for a toy. If Jenelle were a normal child, you'd expect me to be worried about this behavior, but instead I'm so proud of her.
Last Saturday, we had dinner with friends. Altogether there were six kids; Jack, Jenelle, a 5 year old girl, an almost 3 year old girl, an almost 2 year old and a baby that just turned one. During dinner, Jenelle sat in the living room that was already baby proof with various toys sitting around her. She had taken a liking to a tiny toy piano with Barney on it and was at times kicking it to get it to make music.

The one year old baby arrived late to the party and was placed on the floor near Jenelle. It was amazing to see how small this child was in comparison to Jenelle's almost 4 year old body frame, and how she could do so much more developmentally than Jenelle. The baby was not yet walking, but could crawl fast and get into things easily. Eventually, the baby took an interest in Jenelle's Barney piano.

I slowly watched the situation to see what Jenelle would do next, because even though it seemed she wasn't playing with the toy, I knew she was still interested in it. I watched, and all of a sudden, Jenelle rolled onto her side, leaned back, and kicked the baby square in the chest - not too hard, but enough to roll the baby back away from the toy! The baby screamed bloody murder and her Father (who thankfully witnessed the whole incident) picked her up, moved her to the other side of the room and got her interested in another toy. And then we laughed.

I am so curious to know now exactly what Jenelle is thinking. I would love to communicate with her somehow. Clearly, she wanted to get the toy back, and that was her way of responding to the baby. I am so proud! She's come a long way, don't you think?

Tuesday, August 08, 2006


I saw this video for the first time about a month ago. I still can't get through watching it without crying. This is such an inspiration as to Jenelle's possibilities in life.

The Father/Son Iron Man team duo are Dick & Rick Hoyt. Please click here to learn more about Team Hoyt.

Monday, August 07, 2006

Teaching Jack about Different Abilities

Jack started Summer Camp today at the blind children's school Jenelle used to attend. I enrolled him into this camp for two reasons; 1) Summer camp in August for a 5 year old is a rare find in deed! And 2) I want him to experience other children that are like his sister. Today as we arrived, Jack noticed a little blind boy standing next to his Aide with his eyes closed holding a cane. Jack pointed and said, "Look Mommy, that boy has his eyes closed." I finally got to say the one thing I've been longing to say, to help Jack realize that all kids are different.

A year ago, our friend Kim (Lily's Mom) wrote what I thought was a very poignant piece about "The Short Bus" and teaching our (typical) children to accept that other children may appear different on the outside. Here is a short bit of that piece she wrote on June 15, 2005:

Since Lily got her wheelchair we have heard many comments and some are ok and some not so ok. Here are some examples of not ok. One little boy went right up to Lily, looked her over and then pointed and laughed. I shot his mother a look and she didn't seem embarrassed at all. A little girl at the mall just stared at Lily and finally yells "why is she in a chair?" Her mom said nothing, just ignored her daughter.

An example of ok behavior is at the Dr.'s office a little boy says "look mom she is in a chair" and his mom said "yes and you can be her friend." I almost cried with that comment. Kids are going to stare, point and ask why Lily is in a wheelchair and they should. Kids are filled with curiosity and they have honestly spewing out constantly. Our job as parents is to educate our children and show them that it is ok that there are kids in wheelchairs and kids that walk differently and talk differently.

These kids need to know that they don't have to be afraid or make fun just because they are different. I know this is all easier said than done but I am asking you parents to take that extra step to educate your kids, don't quickly shhh them and change the subject. Tell them that God made kids like Lily differently and she is still a kid just like you.

So when Jack pointed to this boy and stated matter of factly that his eyes were closed, I replied, "Yes, he is blind and he cannot see. And that is O.K., you can be his friend!" To which Jack looked up at me and simply smiled.

Friday, August 04, 2006

Jenelle's award at School!

Jenelle's School had a "Promotion & Award" celebration today. It was very touching to see all the children with different abilities. Jenelle got an award for "Most improved with eating and drinking!" We are very proud. Here are some photos:

Jenelle getting her award from Principal Abby. Her teacher Darlene is at the podium.

Jenelle smiled when she got her award!

A close up of Jenelle admiring her award!

As for an update on the "discipline" front. Jenelle has not had any time outs since the second day. Now, all we have to do is threaten a time out, and she stops her behavior. Also, the increase in Tranxene during the day is keeping her calmer, but hasn't done away with her smiles and laughs!

Friday, July 28, 2006

Video of Jenelle's movements

Thought I'd share a short video clip of Jenelle's "movements" that we showed to Dr. Shields. Realize that this is just a short clip, and that Jenelle does this all day, non-stop.

Video Hosting - Upload Video - Photo Sharing

The video clip was taken at Daddy's basketball game last weekend (hence the background noise) and is just a brief example of the constant wiggling and moving she does. This was in an open area - imagine how she hurts herself in a room full of furniture.

Wednesday, July 26, 2006

Disciplining Jenelle - Day One!

After my last update, I got a lot of email and comments from many who were concerned as to "how" we were going to be disciplining Jenelle. Many could not understand why it was necessary. Believe me, we realize she has no ability to communicate with us (which could be most of our problem) and that she is mentally retarded. If anyone knows Jenelle well - it would be us! Trust me, we are going to approach this delicately.

On the drive home from UCLA on Monday, Brett and I decided that when Jenelle started crying for no apparent reason (like she usually does in the evenings) that we would put her in her bed for a "time out" each time. This would provide a safe way to keep her by herself. When placing her in her bed, we would explain that she is getting a "time out" for crying (or throwing a tantrum or whatever fits.)

Tuesday night when I got home from work, Jack and Brett were playing a game, and there was no Jenelle to be found. I looked at Brett and said, "Where is Jenelle?" and he smiled and said, "In time out!" When I found her in her room, she was sitting quietly in her bed and looked up at me and smiled. I brought her back out to the living room and she was perfectly happy until we started eating dinner (a favorite time for her to cry out.) As she started crying, I made sure she was OK (checking her diaper, etc.) and then took her to her room for time out. I explained that she was getting a "time out" for throwing a tantrum. After 5 minutes, I retrieved her from the room, and the rest of the evening was fine.

So, the first day went well and to me, it sounds like she is getting the idea. And as cruel as it sounds (if she were a typical child) it has been less stress on us as well.

The saddest thing happened after I put her to bed Tuesday night. We went through our usual routine; dressing, setting up her IV pump, turn out the lights and turn on the music, etc. I was on the computer for a few minutes, intending to check in on her to see if she was asleep, and all of a sudden, I heard her crying. I ran into her room, and she was face down in bed just sobbing. I picked her up and couldn't figure out what was wrong, so I said, "Jenelle, you aren't in "time out" - it's night night time!"... And you know what, she looked at me and smiled a little. I gave her a hug and put her back to bed, reassuring her that is was time to go to sleep. I left again and 5 minutes later she was out!

I'm not sure why she was crying in bed, but it broke my heart a little to think that she could have thought she was in time out without needing it! Also, it makes me thing that she truly understands us more than we know. So, rewarding her good behavior is easy, but I think this "time out" thing will work as long as we talk her through it! I think she has the capability to understand and hopefully "time out" will soon be something we don't need.

Wednesday night was much better. There were no episodes of "crying", but Jenelle did move a lot. As I put her to bed, I reassured her that she had been a good girl this evening, and that it was time for sleep. I think she knows the difference.

Tuesday, July 25, 2006

Update from our trip to UCLA!

Yesterday we made the trip to UCLA to visit Dr. Shields and Dr. Martinez in the Genetics Department. I don’t know why, but I always look forward to and enjoy these trips. Walking on campus and driving through Westwood; it just makes you feel like a young college student again (and no, I did not go to UCLA.) I also feel like the smartest minds in the world are working on my child, and that they truly want to help us. It could have been a little cooler yesterday, but overall our trip was great.

We saw Dr. Shields first and that visit was mostly uneventful. He is very happy with her seizure control and said it is “better than he ever imagined we could achieve.” He was also impressed with her developmental progress and felt it was due to the maintained seizure control along with coming off Topamax. I think I tend to agree. As I’ve mentioned, I’ve been worried that Jenelle may be showing signs of having a movement disorder. In the last 4 to 6 months (and more so since coming off Topamax) Jenelle’s movements have been out of control. She hurts herself; she injures us and is difficult to control. I brought some video clips of Jenelle’s movements for Dr. Shields to view. He is convinced that her movements are 100% behavioral, and not movements that are consistent with a specific movement disorder, nor do they look like seizures.

While it is a relief to hear that, it doesn’t help us much. Dr. Shields said that if we want to stop the movements then we need to discipline her. “Reward her good behavior” and “discipline her bad behavior” he said. I jokingly responded, “Give her more time outs?” to which he replied, “Exactly!” While it may sound like I’m joking, in all seriousness, we need to find a way “discipline” Jenelle so that she can learn to control herself. Not an easy task for anyone with a typical 3 year old child, let alone one with special needs. There are medications we could use to “drug” Jenelle and keep her from moving so much, but Dr. Shields feels they would also inhibit her development, and that is the most crucial thing at this time. Instead, he recommends we increase her Tranxene to add one pill in the mornings. The only time Jenelle is somewhat controllable is just after waking while she is still drugged from her Tranxene (valium), so we’ll add one pill during the day and see how it works. If she is too tired, we may go back down to our original dose. Our next appointment with Dr. Shields is in February.

After spending time with Dr. Shields, we met with Dr. Martinez in Genetics. He reviewed the results from our last visit last January and confirmed that everything was within normal limits, including the test for typical Rhett Syndrome. We were surprised to learn that since our last visit with Dr. Martinez, a new test for a different “gene” has been discovered to be the cause for “a-typical” Rhett syndrome. Dr. Martinez wants to re-test Jenelle for a mutation of that specific gene that was recently discovered. After mentioning our test for Rhett last time, I received many emails asking “which gene” we were testing. So for those of you who pay attention to specifics – Jenelle was previously tested for a mutation in the MECP2 gene; and her results were normal. This new test will test for mutation in the STK9 gene, and the results will take 8 weeks. Of course, we’re waiting for approval from insurance for this test, so it may be a few months before we get an answer. Amazing how science is constantly changing these days – and imagine where we’d be if they hadn’t mapped that human genome! ;) Also according to Dr. Martinez, we have ruled out some other possible genetic causes including PKU (Phenylketonuria), SCAD (short chain acyl-coa Dehydrogenase Deficiency), mitochondrial disease and Praeder Willi Syndrome.

Jenelle has been doing well with the exception of some increased seizures over the weekend due to the heat (110 degrees on Saturday!) She demonstrated a new skill this past weekend in that she put her lips around a straw. I had fluid in the straw and was putting lemonade in her mouth, and she enjoyed it. Hopefully she’ll learn to suck from a straw soon!

Thank you for the continued prayers – I’ll keep you posted!

Monday, July 24, 2006

My horoscope for today...

Capricorn: The last piece of the puzzle arrives; you can enjoy a new completeness to your life.

I find this very interesting... Seeing as we are driving to UCLA today to see Dr. Shields and to talk with the Genetics department. Hmmm.

Friday, July 21, 2006

Big Brother Jack has learned new skills!

Last Sunday we were busy painting the ceiling in the kitchen (notice the cover on the counters in back of the photo) and it came time to feed Jenelle. I told Brett it was time to teach Jack how to feed Jenelle and he agreed. Jack was very excited about it as well. See Jack holding the syringe (bolus) for Jenelle's g-tube feeding? Jack was so proud of himself and only spilled once when Jenelle accidentally hit the syringe (which is something she does frequently.) He even learned how to "clamp off" the tube!

Not sure why he felt it necessary to wear his swim goggles. Sometimes he like to wear them and pretend he is Spartacus (a cartoon character on Lazytown)! Someday soon, Jack will be big enough and strong enough to lift and carry Jenelle as well. And someday, only Jack and Brett will be the only ones able to lift Jenelle. My back is already not dealing well with her 30 pounds.

What a different life Jack will have, huh?

Monday, July 17, 2006

Just a little laugh...

Yesterday, Jenelle woke at 5:30... Laughing her butt off! At first, I heard it on the monitor - her sweet giggle. Then belly laughs and hearty laughs. So, I got up to check on her - I thought maybe the cat had snuck into her room or something. She was rolling around in her bed by herself- simply laughing to no end.

Makes me wonder if she was dreaming? Of if an Angel was tickling her toes? Who knows, but after I left, she kept up the giggles for 10 more minutes, then slept in until 8:30! That's my girl!

Thursday, July 06, 2006

Jenelle's "post" 4th of July update!

Just a little post 4th of July update on our girl. We had a wonderful, long 4th of July weekend as Jenelle was out of school until today. We took the opportunity to get out of town and go to the Curran Cabin at Lake Arrowhead. Lake Arrowhead had a boat parade on the 2nd and their 4th of July fireworks the night before on the 3rd. The weather was beautiful, however, Jenelle did not seem to do well in the higher altitude. We're not really sure why she was acting so "differently" and can only assume it was the new environment as she does not seem to be getting sick. Her unusual behavior included some noticeable seizures, and a very, very quiet demeanor. Normally, Jenelle is constantly moving and cannot be kept still. However, during our time in Lake Arrowhead, she didn't wiggle, giggle or kick like she usually does - which did provide a bit of respite for us, but had us concerned as well. She took 3 naps in one day, and seemed to cry a lot in the evenings - most of which calmed down after a bit of Tylenol. She enjoyed looking at the lake and playing at the park, and didn't mind the fireworks one bit!

We were home on the actual holiday and Jenelle was the center of attention with our neighbors at our neighborhood block party. Many have noticed her improved tone and many commented that she simply looks like a little girl these days. Although the firework show was cut short by the Orange County Fire Authority (fireworks are illegal in Tustin) Jack and Jenelle both enjoyed the firework show in the middle of the street and Jack told me that "I make the best water balloons" as we enjoyed playing in the water balloon war with the other neighborhood kids.

I took Jenelle to school this morning, and she seems to be back to her usual wiggly self. We are looking forward to our next appointment with Dr. Shields on the 24th as we have lots to discuss.
Here is a photo of Jenelle "sitting pretty" at the Lake Arrowhead Village playground, with the lake in the background.

And here is our girl with "fireworks" in her hair!

We hope you had a safe and happy 4th of July. I'll keep you posted!

Wednesday, June 28, 2006

Remembering why it sometimes sucks to go to Babies R Us!

I posted this also at Postcards from Holland. A few weeks ago, I was looking through some old archives at an internet message board where I’ve been a member for approximately 6 years. The topic of the board centers around Moms with children born in January 2001 – a “Mommy Playgroup” if you will. And this particular playgroup centers on my “typical” son, and not my “special needs” daughter.

I found a post I had written about some of my difficulties early on with Jenelle. It was moving to see how far I’ve come – but also a reminder that this journey through the land of special needs is such a roller coaster of emotions. I thought I’d share parts of that post here, so those of you with special needs children could remember that you once felt the same, or maybe that someone new to this experience will find comfort in knowing these feelings are very normal.

August 19, 2003
(note: Jenelle was only 9 months old at the time, and at this time, we did not know she was having seizures. We just knew that she was "delayed" and did not have any other diagnosis.)

I haven't shared any of this here yet... I mostly post these feelings on the support group boards I've found for special needs kids. I just realized that I should share all sides of this with all of you and not just share Jenelle's updates and improvements, so here goes …

I had to go to Babies R Us last night to get some formula -they are the cheapest around for the bulk size of Good Start. It didn't bother me before, but now it gets to me. You see all these babies, grasping at things on shelves, sitting up, babbling, etc. Then you see all these baby gifts like baby books, milestone charts, calendars, teething rings, walkers, bicycles, etc. I look at some of the toys, and think, that might help Jenelle, and then see the age range is for a baby 0 months to 6 months and that reminds me again. That part of this journey is so hard.

Two weeks ago I hit my low, and posted about it at a special needs board. Everyone there understood what I was experiencing and I got some great feedback and support. Then that night, I went grocery shopping, and at the checkout the cashier asked if I wanted to donate a dollar to “Jerry's Kids” and I lost it again mumbling while fighting back tears that I had my own “Jerry’s Kid” at home. Friends of mine are pregnant again or have recently had new babies. It hurts to hear about their newborns and their recent accomplishments. I keep them posted about Jenelle, but I never share these feelings I'm sharing here. It hurts to hear that a 3 month old has mastered rolling, to know that Jenelle only started doing it last week at the age of 6 months. It hurts to hear a Mommy complain about her Baby pulling her hair, when I wish Jenelle would even take an interest in playing with mine.

I get over these feelings pretty quickly and remember this is a stressful time we are experiencing, and that I'm not the first parent to have a child with special needs. Then I go to Babies R Us for formula... and I’m hit with the pain all over again.

Just wanted to share that I am experiencing both sides of things. I know you all would understand.

Remember the pain of the unknown? How do we overcome it – or do we just learn to accept it? These feels are still fresh, but the sting isn’t as painful. There is hope and things do get better. If you are just starting this journey – remember that! You will find a way to survive, and make it through!

Wednesday, June 21, 2006

WOO HOO - One Year!

Today marks a year since Jenelle's last hospital admission. Wow, I never actually thought we'd go this long (or be this healthy) but I'm thrilled she is doing so well. I checked the archives to read what we were doing a year ago, and unfortunately not much has changed since that last hospital admission. If you'd like to stroll down memory lane, click here.

Jenelle still has bouts of inconsolable crying. We have no idea why she does this. We assume she is trying to get attention or cries in frustration, but as you can imagine it is quite frustrating for us as well. In fact, last night, Jenelle had a screaming fit for a good 45 minutes. When I held her, she stopped crying, giggled a little, then got so wiggly it was too difficult to keep hold of her, so I put her down only to have her start crying again. The crying finally stopped when I decided to give her some Tylenol. In fact, I put her in her bed, gave her Tylenol and left her alone for a few minutes. As if she was getting a "time out" or something. I felt horrible but at the same time, I couldn't stand the crying any longer.

So, playing Dr. Mom, I think I'll continue with the Tylenol when she starts her crying fits. If this works, then we'll need to take her to the doctor and/or ER to figure out what is wrong. My fear is that perhaps she has broken a bone or something and we just haven't figured out where. I hope it truly is simply 3 year old antics.

We are enjoying this first day of summer and this new milestone for our girl! What an amazing year it has been!

Monday, June 19, 2006

Update on Swallow Study

Our girl is doing really well lately - so many new things happening. Today we had our "Swallow Study" done at CHOC, and she did well. She is swallowing, however she is still at risk for "silent aspiration" because she likes to keep food held at the back of her throat before swallowing. We will be back to visit the GI doctor in a month, so I'll know more about the results at that time. I've been trying to spoon feed Jenelle at home some more, and she is doing exceptionally well. Last week at dinner with the family, I tried to spoon feed her and she started choking and was not interested. I set the jar of food on her high chair tray and went back to my meal. After a few minutes, I looked over to see Jenelle with her mouth around the jar as if she were trying to get the food herself. I then tried to spoon feed her again, and she really took more interest in eating, and even made effort to lean forward with her mouth open to get the spoon in her mouth. This is excellent progress and hopefully feeding will continue to improve.

Jenelle recently had an ear infection, but that has since cleared. Last Friday I picked her up from school and walked in to find her "walking" down the hall in a gait training walker. I didn't recognize her at first because she was walking so very well. She is sitting like a champ these days, and often gets up on her knees as if she wants to walk on her knees. She has amazing strength. Jenelle's school will continue through the end of July, and we are thankful for the extra therapy.

Thanks for the continued prayers - I'll keep you posted!

Thursday, June 15, 2006

Happy 1st Anniversary to Jenelle's "Gas Tank!"

"Ode to the Mic-Key Button"

Oh Mic-key button, we love you so,
because of you, our girl can grow.

Feeding is easy now and meds are too,
Oh the arguments and fights that we went through!

The hospital and ER visits are seldom and few
however did we survivie life without you?

Jenelle a year ago with her "temporary" g-tube:

And 6 weeks later with her permanent Mic-Key Button:

And just for fun, a cute story about showing Jack his sister's G-Tube for the first time:

"When Jack got home on Thursday, I sat down with him and explained that Jenelle had surgery and was now going to have a "feeding tube" sticking out of her belly. After explaining what it was for and what it looked like and that he should never, ever touch it, I asked if he wanted to see it. He said yes, so we went into Jenelle's room where she was in her crib and I pulled up her shirt to show him the tube. Jack looked at the tube, then said, "Mommy, she has a gas tank now!" (he is right in more ways that one!) And that was it - he was relatively un-phased by the whole thing!"

Happy 1st Anniversary Mic-Key Button!

Tuesday, June 13, 2006

Mommy & Jenelle Day

I had a beautiful dream the other night. Jenelle was sitting up all nice and pretty and I was lying down next to her on the floor. Not sure what we were doing. Then all of a sudden, she looked at me straight in the eye and said, “Thank you Mommy!” And then I woke up.

Jenelle had an ear infection over the weekend. Last Friday she was running 101, and again on Saturday so we made a trip to urgent care. The right ear was infected and we left after 40 minutes with a prescription for Zithromax. She was fine on Sunday, but woke with a fever of 102.5 yesterday. Immediately I knew I would be staying home with her all day.

Yesterday was one of the best “Mommy & Jenelle Only” days ever. We cuddled, we hugged and if not for the 102 fever I knew she couldn’t possibly have faked, I would have thought she was being sick on purpose to skip school and spend the day with just me. Sometimes I wonder what she is thinking. Which brings me back to my dream.

A year ago when the show Medium first came out, I was surfing the website for the real life Allison Dubois and saw that she had an email address for people wanting “Closure” about loved ones that have passed on. Next to the email address, there was a warning that at that time they could not assure that all emails would be returned promptly as the real life Allison was busy working on the new show, etc. (I have since noticed that this feature has been removed from her website as she is too busy.)

I felt compelled to write to her and sent a very brief email asking if she also had the ability to communicate with persons still alive that could not communicate (i.e. babies and the mentally retarded.) I explained briefly that I had a child with special needs and that I always wanted to know if she was aware of what was going on and whether or not she was happy.

I got a response the very next day. It read:

Yes I can do that and let me save you some pain and money. Your daughter knows she's loved and does feel happiness. To her when she feels an episode it's almost like a void in her day. She's in good hands and is quite angelic to those who've passed that help you take care of her.
All My Best,

I still cry when I read this email response. It has meant so much to me. I do believe that there are Angels everywhere, and this response moved me deeply. It could have been a “canned” answer, but it is what I needed to hear at the time. Just like my dream the other night. Although sometimes caring for Jenelle feels like being on auto-pilot, I think she truly realizes all we do for her benefit. And although she may never speak or have the capability to sign, in my dreams she is thankful. And truly, that is all I need to know for now.

Friday, June 09, 2006

A new look for Jenelle's Journey!

Well, I decided that my Princess Jenelle deserved a new look, and found this beautiful "free" template at Zootsdesigns. Thanks for your help Miss Zoot!

Speaking of which, Miss Jenelle got some new "Princess" shoes last night. She's grown from a size 6 1/2 to size 8. Too bad she only grows out of shoes and doesn't actually "wear" them out.

Let me know if you like it - I'm still playing with it myself.

ADDED: Some of you with a "Firefox" browser are telling me the words at top are bunched together. Not sure how to fix that, but I'll try. It looks OK in my Microsoft Internet Explorer.

Monday, June 05, 2006


THANK YOU for your support of the 2006 Epilepsy Freedom Walk! Jenelle’s Avocados has raised $9,100 – not including some checks I still have sitting on my desk and that are some that are still to come via U.S. Mail! In all, the walk raised almost $81,409.42 – they are still counting the money! 100% of the funds will go directly to Orange County services for families like ours affected by Epilepsy! We couldn’t be more pleased, and we thank you from the bottom of our heart!

Here are some photos of the day on Saturday, which was very hot at 95 degrees:

Miss Jenelle in Angels Red!

Our "Rally Monkey" Wagon!

Jenelle's Avocados 2006!

And some exciting milestone news for Jenelle - Saturday she took sips from a sippy cup! We are so excited with this progress - and it will make it much easier to keep her hydrated over the summer with this new skill! This also gives me hope that she may start to enjoy new foods as well. Last night at the grocery store, I had to purchase many different types of juices to get Jenelle interested, and a couple of new sippy cups as well as I think I tossed our old ones!

Thank you again for your support for the Epilepsy Alliance! Jenelle has her swallow study scheduled for June 19, so I'll keep you posted!

Friday, May 19, 2006


All I can say is WOW! Thank you all so very much for the donations this week - we are almost half way to our goal! With my last Jenelle update, we were barely over $2,500 as a team, and now we are at $4,700. Thank you so much for the support - please keep it coming! And if you haven't had a chance to donate to Team Jenelle's Avocados, please check it out when you can! The Walk is the weekend after Memorial Day.

Today I got a message from Jase on the East Coast that I wanted to share with everyone. Remember, Jase is the little boy who coined the phrase "Jenelle's Avocado" two years ago when he told his Mommy he wanted to be her "Avocado" (Advocate.) He could use some donations as well - he is really speaking from his heart!

Mom said it was ok if I wrote this so here goes. Please support Jenelles
Avocados. This is important to all kids. I have a picture of Jenelle from the
walk when she was sick and in the hospital. I don't want her to be sick like
that again ever. I don't want any kid to be sick like that. I have $110 raised
here in Stafford and Miss Terri and Miss Geri gave money. I am very happy about
that. I don't like girls yet but I know girls like to dance. I want Jenelle to
dance. Thank you and I am giving the computer back to my Mom now.

Click here to donate! Thanks again! I'll keep you posted!

Monday, May 15, 2006

Jenelle & Freedom Walk!

I realize its been quite a while since our last update, and now that we are getting closer to the big fundraiser "Freedom Walk" for the Epilepsy Alliance of Orange County on June 3, I really need to keep everyone in the loop. In addition to being on the Freedom Walk Committee with Brett, I’m also preparing my boss for a jury trial to start in Los Angeles the Monday before the Freedom Walk! Talk about burning the candle at both ends ... but enough about me and my excuse for not any recent updates.

Jenelle is doing well, although lately she has bouts of crying. As you know, Jenelle usually does not cry unless she is upset. My biggest fear is that she has hurt herself somewhere, and we just can't tell where… and the other idea is that maybe she has learned that crying is a way to get attention, and thus she is acting like a typical 3 year old. Either way, stress at work, stress about the Freedom Walk and a crying child make life hectic. In addition to sitting up, Jenelle is also trying to stand up and walk on her knees! Its really great to see her so interested in mobility, however she has way too many bruises from the many falls she is taking. I'm starting to be concerned that maybe we are dealing with a movement disorder because it has been difficult to keep her still - even during diaper changes and baths. Her seizure control has been good, and we are scheduled to see Dr. Shields and hopefully Genetics on the same day in late July, so I plan to bring up a possible movement disorder at that time. I've been playing phone tag with CHOC regarding her upcoming swallow study. Hopefully we can fit that in somewhere with our busy schedule soon. Recently, we adopted a new kitten who is absolutely adorable, but he thinks Jenelle is a big play toy! She smiles and giggles when he rubs his fur on her feet or face, and does not seem to be allergic like her Mother. ;)

Finally… the Freedom Walk is quickly approaching! For those of you who have already donated or joined our team - THANK YOU! I wanted to remind everyone that if they plan to walk with us that day, they need to be registered on-line in order to get a free t-shirt. If you just want to show up that day and are not concerned about the walk t-shirt, that is fine too, just let me know so I know to look for you that day! I set our team goal fairly high this year to $10,000 based on our making $7,000 for the last walk, but sadly we are just above $3,000. We realize that gas prices are horrible, and that with last summer's Hurricanes - charity giving can be tight these days. Both Brett and I are very committed to this organization because they have done so much for our family in the way of support - the biggest being the free advocate that attended Jenelle's three IEP meetings with her school district earlier this year. This is their biggest fund raiser and we hope to help them keep the services free to all families affected by Epilepsy. We hope you can help us! Here is the link to our team page:

Jenelle's Avocados

That is all for now! Thanks for your support and continued prayers - I'll keep you posted (when I can!) ;)

Wednesday, May 10, 2006

This day... a year ago...

I never felt so helpless in my life. The first one was three minutes long. The next almost 5 minutes. Then the next, only a short two minutes. After each one, she would look at me and scream, then cry until she had another. It was as if she was begging me to make them stop, and there was nothing I could do. I looked up at the doctor who was on the other side of the bed. We both had been watching the clock above; timing them. This had gone on for 20 minutes without a break. She was a young attending, and she looked uncomfortable and was biting her lip. She then looked at me and asked , "Well Mom, what do you want to do? Can she take another dose of Ativan?"

Twenty-five minutes earlier, I had called Brett (who was getting food) to tell him that it looked like they were going to send her home! And next thing I know, her seizures were out of control and instead of going home, we were in the tunnel that leads from the emergency room in the main hospital to the children's hospital across the street. It took two more doses of Ativan to stop the seizures and knock her out for the night. She was on oxygen and there was a crash cart at the end of her bed as we transported her. We were escorted by the doctor and three ER nurses to the Pediatric Intensive Care Unit (PICU), where we stayed for 5 days.

This was the first time I realized that she could die from a seizure. I felt so helpless. We've come a long way in this past year. What a difference a year makes!


I drafted the post above 10 days ago, because I've been anxiously waiting for this day to come... And pass. It is such a weird thing, I remember the exact date and time of each and every one of Jenelle's hospital admissions. This was the worst point of last year. The next date we need to pass is June 21. After that day, it will have been a year since Jenelle was last hospitalized. Knock on wood!


Just a reminder... The 2006 Epilepsy Freedom Walk is coming June 3, and we are walking as "Jenelle's Avocados" to help raise funds. 100% of the funds raised at this walk will go directly to services that benefit families like ours in Orange County, including a free advocate to work with Jenelle's school, free seminars, free therapy sessions, and free education regarding new treatments in Epilepsy. Please help us with your donation if you can - click on the button above to access our team website and make a donation.

Thank you!

Monday, May 01, 2006

Blogging against Disablism!

Forward: Today, blogs all across the internet are posting stories about "disablism", which is discrimination against those with disabilities. I was moved to participate, and because I feel this issue is so important, I am posting it at the top of the page this week, above my usual introduction about Jenelle with the funny date in the future. Please click here to visit the website that organized this effort to check out other stories about this most important cause. And now, our story...


I will never forget the first time my daughter was discriminated against because of her disability. She was only 18 months old. I remember feeling stunned and shocked and in disbelief at such ignorance. But sadly, I also realized that this was just the beginning, and that she would have to face and overcome various forms of discrimination for the rest of her life.

Jenelle is 3 now, and officially remains “un-diagnosed.” When people ask “what’s wrong” with her, my first answer is “She has Epilepsy.” We say Epilepsy because most people have heard of Epilepsy. They think they know what Epilepsy is, but unless your life has been touched by it, few truly understand what it is and is not. After Epilepsy first came into our lives, I quickly learned that the name “Epilepsy” also brings out fear, stigma and ignorance.

We believe that Jenelle first started having seizures when she was approximately 6 months old. We aren’t really sure when they started because they can be so subtle in an infant. Upon confirmation of her seizures, we began seeing different neurologists and trying different medications in an effort to stop her seizures. When she was 18 months old, we spent the night at Mattel Children’s Hospital at UCLA while they tested to see if Jenelle was a candidate for brain surgery. Sadly, she was not and we were given the news we feared most – Jenelle had Lennox Gastaut Syndrome, a rare and devastating form of Epilepsy. We were told to expect a difficult battle in controlling her seizures, that she would be severely mental retarded, and that it was possible that one seizure could kill her (SUDEP - Sudden Unexplained Death in Epilepsy). We were told she may have a short life, and that she may not live past age 5 if we could not get the seizures under control. The news was devastating.

At the time, Jenelle was enrolled in a school for the blind, as she also suffers from cortical blindness. I have always been quite open in discussing all of Jenelle’s medical problems with anyone who will listen (this blog is a perfect example of that!) The main reason for this is that her “undiagnosed” condition is so rare; it may not even be a diagnosis yet. Also, I sincerely hope that her story brings inspiration to other families that have a child similar to Jenelle. So upon returning Jenelle to school, I gave her teacher all of the “gory” details of her “new” diagnosis. This was my biggest mistake.

The next day when I was dropping off Jenelle at school, I was met in the parking lot by the school administrative director. The school board had decided that Jenelle’s condition was too severe, and that she could no longer come to school. I was shocked and at the same time felt as if the wind had been taken out of my lungs. This school catered specifically to students with disabilities, and Jenelle was not their first child with Epilepsy. Yet, as I later learned, the fear about seizures, and the possibility that Jenelle could die from one was the main reason she was immediately pulled from the school. What shocked me most was their ignorance, in spite of their catering to disabled children. Jenelle was no different the day after her visit to UCLA, than she was the day before. And sadly I realized that this “disability” would always work against her for the rest of her life.

Seizures are not pleasant to watch. They are sometimes loud, violent and are always frightening. If a seizure goes too long, it is a medical emergency. Not many people know what to do when someone has a seizure. Because of this, the word “Epilepsy” carries with it a huge stigma, and lot of misconceptions. When I first heard the word Epilepsy, I was immediately relieved because I ignorantly thought it could be easily treated with medication. Obviously, in the last three years I’ve learned more than ever imagined and I witness first hand at how devastating Epilepsy can be.

It was not too long ago that people with disabilities were treated poorly. I’m not saying that they way they are treated today is any better, but it was so much worse just a few short years ago. Patients with mental incapacities were often sterilized by the government, children confined to wheelchairs were kept in separate class rooms, students with learning disabilities were labeled as simply being “slow”, and Epileptics were labeled as having “fits” not seizures. I won’t even begin to describe the abusive language associated with disabilities. You know the names; you know the hurtful things people can say. We’ve come a long way, but we have so much farther to go.

When I see programs in schools like “full inclusion”, I realize that it is a step in the right direction. Children in school now have more exposure to children who are “different” than I ever had growing up. However, I realize “full inclusion” is not for every child with a disability, especially my Jenelle. Is it too much to ask that society treat her differently because of her disability, but that they accept her equally because of it as well?

After our first taste of discrimination, when my disabled daughter was removed from school because of her disability, I realized the harsh truth that life would be difficult for her. Six weeks later, after battling the school board, and threatening legal action – Jenelle was allowed to return to a modified school schedule. They refused to keep her in after school daycare because the care giver was not comfortable with her. I still resent their actions, mainly because it came from the very place I least expected to find it. But perhaps I needed that rude awakening, so that I could be a stronger advocate for my Jenelle.

As eloquently stated by Lady Bracknell in her “One in Seven” piece; disabilities affect all ages, all races, all religions and all political views. And sadly, those with disables are the most repressed minority in the entire world. This country fought to free our black slaves, for women’s rights and today for gays and lesbians. Why do we continue to overlook the disabled?

I hope that our story helps you realize that even the smallest and youngest one with a disability can be discriminated against. We need to open our minds and our hearts, and we need to make life better for everyone, even those who appear to be a little different.

Saturday, April 29, 2006

On Monday, I will be...

Blogging Against Disablism Day

Please check it out - and join in if you have something to say too!

Friday, April 28, 2006

Genetic Test Final Results

Just a quick update on Jenelle. She's been completely off Topamax since April 16, and unfortunately we are seeing more seizures than usual. In fact, the day after my last update, Jenelle had a short grand mal at daycare - her first since last September. The good news is that the grand mall did not last long and did not require Diastat (her emergency medication.) Also, the increase in seizures has not affected (knock on wood) her progress as she continued to sit up on her own, laugh, smile and seem more interested in the world around her. Upon reading my last update about the feeding issues, a friend reminded me that Topamax is also an appetite suppressant! I'm told it could take a month or more to get the Topamax out of her system so hopefully we may see an increase in appetite that would also help the feeding issues. We are keeping an eye on things, and if we notice the seizures increasing, I'll put in a call to UCLA to see what to do next.

Speaking of UCLA, the genetics department called yesterday and spoke with Brett. All of the tests they ran for Rett Syndrome were negative. I had assumed they were negative as they hadn't called since they last told us the initial test was negative, but apparently as each test was returned as a negative, they ran another test for another gene until they could completely rule it out. Genetics would like to see us again, and we may schedule something for our next scheduled appointment with Dr. Shields in July.

Wednesday, April 26, 2006

On being a working Mother

I was just telling someone last week, that I was so grateful for Jenelle’s school, and her wonderful daycare provider and her many therapists. Because of these people, I get to simply be “Jenelle’s Mommy.” This idea is not my own. Way back when the problems first surfaced for Jenelle, I spoke with a woman who was working full time as an attorney and who had a child similar to Jenelle. She was giving me advice on Regional Center, and requests to make with social services and the like. As the conversation ended, she said something I’ll never forget; “Remember Kelly, your job is to be her Mother. Not her doctor, not her nurse, not her teacher or therapist, but her Mother. You should not be trying to practice her therapies at home, but be the one to kiss her after she gets a shot, and to hold her when she cries. That is your most important job with a child with special needs like Jenelle.”

So, putting aside those “special needs”, why can’t this be true for all children as well? Why isn’t it acceptable to voluntarily work as a woman, and leave others to care for your kids during the day? This issue of the “Mommy Dichotomy” seems to be a hot topic this week, and a recent post at a very popular blog really hit me the wrong way. After getting up the nerve to comment about it, the author responded and I later realized she was truly being sarcastic, and actually trying to give credit to the Mothers who choose to work. However, In reflecting on my hurt, I think I now realize the real issue that hit home with me is that I wonder whether or not people think I’m wrong to continue working, especially with a child like Jenelle.

I’ll never forget when Jenelle’s first Neurologist (a doctor I didn’t really like) point blank told me to quit my job to take care of Jenelle. I think I recall him saying something to the effect of “You are not showing me that you are very dedicated to Jenelle’s medical needs if you continue to work!” and “Wouldn’t you want to enjoy the little time you might have left with her now than regret not being there because of work?” He said things like this on more than on occasion. And he couldn’t have been more wrong. Sometimes people have to work. And of course I drop everything when there is an emergency with Jenelle. Who wouldn’t? And my employer understands. Thankfully, our current Neurologist doesn’t see things that way.

When Jenelle’s medical issues got worse, I was struck with the realization that I was forced to continue working for our insurance. Being that Brett is self employed, our only health insurance comes from my employer, and if I left, I’d lose not only my income, but would be paying more for private insurance (and risking that other insurance might not carry Jenelle!). Clearly, that was something we couldn’t afford at the time. Now, Jenelle receives Medi-Cal, and should we ever lose my insurance, she would always have that to cover her medical expenses. And I’m still working. By choice.

Jenelle’s care-givers during the work week do more for her than I could ever imagine trying to attempt. But of course, that is their job, and that is what they were trained to do. Because of her care-givers, I can go to work and come home to be her Mommy. To love her, hug her, bathe and care for her like any parent would do. And our life is better for it. And because of it, Jenelle knows her Mommy. She knows I am her comfort, and she knows I love her. That really is a Mother’s job, isn’t it?

Ironically, Brett and I have recently discussed my maybe going part time in a year or two. Not necessarily because of Jenelle, but because of our typical son Jack. Jack will be starting school in the fall, and is very busy with his many extra curricular activities, even at age 5. He will need someone to help him after school and to take him to all his activities and such. But even with families where both parents work, people manage this all the time. Somehow it works, and it’s OK, and if I don’t go part time, he’ll be fine. I'll still be his Mommy.

The real question is - Why do I have to justify this to anyone? I think the answer is because as a Mother, we also carry guilt. But when I get tired with work, and start to dream that maybe it would be nicer to be at home, I think about Jenelle, and realize I’m a better Mother to her because I work. And isn’t that the real goal in the end? To simply be a good Mother, whatever way you choose to Mother your children? At least that is my goal, no matter what anyone else thinks!


Just a little update - Jenelle continues to do well with the wean from Topamax. Unfortunately last Thursday she had a grand mal - her first since last September. She had it at daycare, and her provider said it only lasted a few minutes, and didn't even require Diastat. In fact, she didn't even feel the need to call me, and told me the next morning. And you know what? I'm not sorry I missed it. I have complete confidence in the people that care for Jenelle while I work. And Jenelle has been just fine ever since.

Saturday, April 22, 2006

Three years ago...

Three years ago today, Brett and I had a very difficult day. I left work early because we had a doctor's appointment for Jenelle - just the usual 6 month well baby check up. However, on this day, we had a lot of questions and things to discuss with Dr. Patel. While we still had hope that Jenelle was just acting like a "premature baby", we feared there was something more.

At 6 months, Jenelle was not sitting up, she could barely hold up her head, and couldn't even bear weight on her legs. She was as floppy as a rag doll. She was content though, slept well and had just mastered rolling over. There was hope. After a long discussion, Dr. Patel agreed there might be something more and put in for a referral to a neurologist. Basically, the beginning of Jenelle's Journey.

After that appointment, we took the kids to grandma's, and went to a funeral. We barely knew the young man who had died, but we knew his parents well. His Mom was like a mentor to me as a paralegal, and his life paralleled ours in many ways - we got married a month apart, we had babies weeks apart, and he was our age. Danny died of a cancerous brain tumor - his fourth. It was such a difficult day to endure.

I don't really see Danny's Mom Linda as much anymore. Prior to his death a group of us including Linda tried to meet for dinner every other month. They were my "paralegal support group." Things changed that day 3 years ago for all of us. A few months later, Jenelle was diagnosed with Epilepsy, and the only words to describe that time in our life would be chaotic. Linda changed too - I cannot imagine burying your child, even a child at age 30. Parents are not supposed to out live their children. The family remained strong, and her daughter married later that year, but I know it has always been difficult and different since Danny died. And he left a young wife and 2 year old daughter.

Linda has been on my mind so much lately. I really need to email her or call. She has been a source of great support because she can relate to the seizures since Danny had them from his tumor. It's not easy to watch a child have a grand mal - I can't imagine watching a full grown man. Linda tells me that she knows Danny is watching us all - and she often prays to him to take care of Jenelle. The funny thing, I think he is watching her and taking care of us all. And life goes on.

So while today is an anniversary of sorts in that this is where Jenelle's Journey begins, I can't believe its been 3 years. The recent months have been good to our girl, and we'll take it! I hope we have many years to come.