Smiles from Jenelle at Christmas!

After Christmas Update on Jenelle

Just a quick update to let everyone know we had a wonderful Christmas and enjoyed many smiles with Jenelle. Unfortunately on Christmas she started to get a Urinary Tract Infection and was quite miserable without the help of Motrin. I was able to call her doctor on the following day to get a prescription and she is doing better now. Unfortunately, it seems Jenelle does not want the year to end without another illness. She started coughing on Tuesday and has a viral upper respiratory infection. We saw the doctor this morning, and she prescribed some great cough syrup that also helps Jenelle get some much needed rest. Jenelle is doing well weight wise, and is almost 29 pounds! That means she has gained a total of 8 pounds since getting her G-Tube!

In other good news, Jenelle is still very close to sitting up and unfortunately has cuts and bruises on her face to prove it. Earlier this month, I asked our doctor to put in the request for a "helmet" and learned this morning it has been approved! We really didn't think we'd need a helmet until Jenelle was more independently mobile (ie: walking) but knew she'd eventually need one because of her "drop" seizures. And in all honestly, I didn't want to wait for a trip to the ER for stitches to prove she needed one, and fortunately neither did our Doctor! We are also excited about this news because our insurance is changing next month and we will have a $5,000 limit on Durable Medical Equipment. Fortunately Jenelle has most of what she needs equipment wise (Stander, Wheelchair, AFOs), but with her G-tube supplies, that $5,000 won't last long. Our previous insurance had no limit. It will help that this helmet will be covered by our old insurance as it won't count against the $5,000 limit we have with the new insurance. We are very pleased with the new insurance (via my employer) as they have already assigned us a "transition assistant" and "case-worker" to insure that Jenelle's appointments at UCLA in January and February will be covered.

Wishing you a wonderful New Year - we hope your holiday has been special. Thank you for the continued positive thoughts and prayers for Jenelle. It means so very much to us all!

Merry Christmas!

Wishing you and your family a Merry Christmas,

and a peaceful New Year!

Thank you for all your love,

prayers and support

for our special girl!

Visits with Santa!

This first photo is Jenelle and Jack with "Santa Cop", courtesy of our local Police Department. The City has a tradition where "Santa" visits the neighborhoods for photos each year, he literally drives up in front of our house with a special sleigh, and a police escort! This photo is great of Jenelle, but Jack was too eager to eat that candy cane!

And here is the "official" Santa photo for the kids this year. I like it, especially that Jenelle is not sucking her thumb this year!

Ho Ho Ho!

Thank you all for the many comments and emails about Jenelle's recent photo. We agree 100% that it is the best ever photo of her, and truly in the photo you can see that she is so happy. What a difference! We are glad to send a smile your way!

12/14 update on Jenelle

Well, the photo below was taken by Jenelle's Great Aunt Nicki and was just too cute not to share! As you can see, Jenelle is happy and doing very well. Things have been going well at her new school, and she is so very, very close to sitting up. However, I think once she finally sits up, she won't know what to do with herself. I've noticed a huge difference when I lift and carry her in that she can really keep herself stable while being held. That gives some relief to Mom's old aching body. She is also really using her arms and elbows to support herself on her tummy, and even attempt to crawl. We couldn't be happier with her progress.

Seizure wise things are the same, which is good (knock on wood as always!) We still see some eye flutters here and there, but nothing too concerning. We got a call from UCLA Genetics last week, and they want to see her on January 30 to discuss her tests from July, and possibly suggest some more tests. They wouldn't tell me more than that, which is concerning only because its not fun to guess about anything involving genetics. She sees Dr. Shields again on February 2, so that week should be busy.

We hope this update finds you all happy and well and getting ready for your holidays. Thank you for the continued prayers and support. I'll keep you posted!

Santa's Little Helper!

Just sharing the cutest ever photo of our girl! She is actually upside down, but the smile is perfect!

Genetics

Genetics. Just the word gives me the chills. I think it is because anything wrong genetically, cannot be fixed. Back when Jenelle was 6 months old, we had our first genetic test done, which was a basic chromosome panel and FISH test to determine if she had a chromosomal defect and/or Praeder Willi Syndrome. Both results were normal, and the Neurologist at the time told me her chromosomes were prefect with no noticeable defects. I’ve never worried about a possible genetic problem since, until I learned that the basic chromosome panel barely touches the surface of all the possible genes they could test. And then in August when UCLA called to inform me that one of her test results came back abnormal, I began to worry again. They haven’t told me much since, except that they were going to have their genetic doctor review her file (which is undoubtedly huge!)

Last night there was a message on our phone from the Genetic Department at UCLA. They want us to come in for an appointment, so I called today and we are scheduled for January 30, 2006, which surprisingly is pretty quick. They actually had something on January 9, but I’m busy that week with work. When I made the appointment, I asked the nurse if she knew anything about what we were looking at, and she said, “We’ll discuss all of that when you come.” And later in the short conversation, she told me to expect the appointment to take at least an hour or more.

I realize there is absolutely nothing we can do to fix any genetic flaw in Jenelle, but a lot of this reminds me of that movie Gataca. Science is advancing at such a rapid pace, we are learning more and more each day about new conditions, and in rare cases new cures. But really, how perfect can the human body get? Even if they have now discovered a genetic flaw in Jenelle that may even give us a diagnosis that we never thought we’d know, is it really going to make a difference in who she is? That my friend is the needle in the haystack. The glimmer of hope that we find the one small thing that can be corrected and give us the miracle we’ve dreamed of having. I doubt that will happen, but I do think we will get some answers, and maybe some realistic idea about whether or not we should have a third child.

A friend from work lost her newborn child this week to a condition so rare that it happens in only 1 of 3,000 pregnancies. When you think about it, I’m sure we’ll never have a child like Jenelle again – her problems are so unique, it would be hard to duplicate. But that doesn’t mean that my age, or my autoimmune disease aren’t factors to consider in thinking that we could have a child with a different problem. A Downs baby or the rare instance of a child with cancer, heart defects. Perhaps there comes a time in life when you accept what you have, and not risk further struggles and heartbreak. I supposed we’ll know more that will help us make that decision in January.

Thankful.

I didn’t do one of those “I’m Thankful for” posts for Thanksgiving this year. Mainly because I simply forgot. Last night we were driving home from the annual family white elephant party and we were listening to the radio station that plays Christmas Music 24/7. While listening to the beautiful music, I started to feel guilty for not making it to church the last few weekends. I’m not a “go to church every Sunday” type person, nor am I overly religious.

As I was listening to the music, which I believe was “Hark the Herald Angels” I began to realize that I love singing these “religious” Christmas songs, and I really only get to enjoy them on Christmas day, which is the one day we manage to make it to church this time of the year. And then, after that thought I realized that I’m taking things for granted with God. We have so much to be thankful for this season; mainly Jenelle's seizure control and that she found her laugh and smile. I’m not sure I could have survived another holiday without it.

Yesterday afternoon, we were at a birthday party for my best friend’s daughter who just turned 3. My best friend and I were pregnant together when I was pregnant with Jenelle, and it was difficult watching her daughter grow up normally while we were going through the struggles we were having with Jenelle. My best friend is a NICU nurse as is her sister-in-law, so they have been supportive and helpful, but still it’s hard to see what should have been in her daughter as compared to Jenelle because their age is so close. While the kids were watching her daughter open gifts yesterday, I had fun playing with Jenelle on the open floor making her giggle and laugh. And then it occurred to me that at this party a year ago, all I did was sit in a chair with Jenelle in my lap, counting the seizures she was having in my arms while the kids were watching the presents. I remember feeling every jerk of every petite seizure she had. I remember counting them in my head because I was afraid we were going to need to use Diastat to stop them, or worse a trip to the ER. In looking back in the archives, this was about the time we realized Lamictal was making her seizures worse. What a difference a year makes.

Since July, when Jenelle gained seizure control, this year has been so wonderful and enjoyable. Her personality is so adorable and outsiders almost feel connected to her for once. We almost feel like we have a somewhat “normal” life now with Jenelle. And I have taken that for granted.

I know that there are times that parents of children with Special Needs question or get angry with God, because I’ve had those moments too. I also realize that God has a plan for my daughter, and for my family along the way. But last night I realized that I am thankful to God for His gifts this year in my Jenelle. Does this mean I’m going to go to church next Sunday? Maybe. I also realize that good health is important, and I shouldn’t push myself too hard because being ill does my daughter no good. The extra sleep on Sunday might help keep me well. I do feel I have many things to be thankful to God for this season. And now that I realize it, I really wanted to share it with you, so I don’t take it for granted.

Finalized the IEP!

Just a quick update to let everyone know Jenelle is doing well. We met with her new school on Monday to finalize her IEP because her 30 day introductory period was over. We got to meet her new PT, OT and Vision Therapist, all of which said she was "adorable". I'm hoping this is not "too much information", but we were surprised to hear that they were starting a "potty training" regimen with Jenelle, and that she was actually successful peeing on the potty 3 times! If you are like me, you may be wondering how they are doing this. Apparently they start with scheduled times to put Jenelle on the potty all throughout the day, and accordingly she has "pee'd" successfully three times (for the month!) Not sure if it is a fluke, but it is a start. I've always imagined that Jenelle would forever be in diapers, and the thought of potty training her never enter my mind. It is a slow process, but maybe in a few years, Jenelle will understand the need to go, and will be able to tell us when we need to put her on the toilet! What a wonderful idea - I'm glad they know what they are doing with her!

We are doing well with seizures, but Jenelle continues to have "stuffy" days which confirms my suspicion that she has some allergies. If it continues to be an issue, I think we may need to start her on an antihistamine. We'll just wait and see because I hate to put her on more drugs if we don't have to!

That is all to report. Seizure wise things are great (knock on wood!) Now we're just trying to avoid the flu and other sicknesses that are common this time of year! Thank you for the continued prayers - I'll keep you posted!

Thanksgiving Update!

It occurred to me yesterday during dinner that I forgot to send out an update before leaving work on Wednesday. I realized that without an update, some might worry that we were in the hospital again. No worries, this is another "no news is good news" update!

Jenelle is doing really well at school, and big brother Jack got to visit last Friday morning. He really liked her teacher and her room. He thought it was very "safe" and very colorful. His teacher said he was a smart little boy (and she's right!)

Jenelle is very close to sitting up, and in fact has mastered rolling to her side and resting on her elbows very well. I was surprised the other morning when I walked into her room to see her sitting on her side with her head in her hand. It was as if she were relaxing or something. She only holds this position for a few seconds, but gets better each day.

Monday afternoon is our 30 day IEP with her new school. I'm confident we will all agree on everything, and I'm anxious to meet her new Physical Therapist and Occupational Therapist. That is the only thing I miss with Jenelle taking the school bus now; I rarely get to interact with her therapists, so I sometimes feel out of the loop. She still seems stuffed up, and I worry that she inherited my allergies (just what this child needs, more drugs!) Other than that, at least she is staying healthy (knock on wood!)

Hope your Thanksgiving holiday was wonderful! We're still waiting to hear from UCLA about the visit to genetics. Thank you for your continued prayers and support - I'll keep you posted!

Below is a photo of Jenelle as she arrived for Thanksgiving... all tuckered out with Grandma and we had only been there for 1 minute!

High Court Rules against Parents in Special Education Case

A new blow to parents of special needs kids... and in my opinion, it comes from the very court we expect to protect our kids the most. Here is the article and editorial post from Postcards from Holland. Needless to say, this is a message to all parents that we need to fight, and not give up on wanting better things for our kids.

Tagged by Het!

I got tagged by Heather with this one. I can't believe how long ago this was! Please play if you have a blog and you want to!

Here goes:
1. Go into your archives.
2. Find your 25th post.
3. Post the fifth sentence (or closest to it).
4. Post the text of the sentence in your blog along with these instructions.
5. Tag five other people to do the same thing.

Here it is ... October 16, 2003: “He admitted her immediately because he was concerned with her being so sleepy.”

"Bad Mommy!"

I got a “Bad Mommy” award yesterday. Accidents happen to everyone I know, but I’m still pretty down about it. I left Jenelle in her wheelchair on the sidewalk while the bus was driving up so I could run into the house to get something. I forgot to lock the brakes, and she rolled off the curb and her wheelchair tipped over. She cried a lot. I cried a lot. She went to school and an hour later they called to tell me they thought I should pick her up because she hadn’t stopped crying. Fearing the worst like a broken arm or rib, I took her to the emergency, our favorite place in the world (NOT!)

After waiting over an hour for a room we finally got in and took her out of her chair. Immediately she stopped fretting and was rolling around on the bed like nothing happened. The doctor checked her out quickly, and we were on our way home. The quickest stay in the ER next to the time we were directly admitted to the hospital! After it happened as I was driving to work, I called Brett to tell him what happened, and he responded, “Honey, she has already forgiven you.” I guess he wasn't exactly correct because if she had forgive me so quickly, we wouldn't have made the trip to the ER. But once we got in, she was fine - just a bump on the head... not that her brain wasn't already broken anyway.

I know I’m a great mom. Accidents happen and I’m sure I’ll never forget to do it again. I’m sure she has forgiven me, but I still feel horrible. It is a constant reminder that she is so fragile, and life for us is not normal.

Jenelle held my hand!

Not much new to report. I forgot to mention that when we saw Dr. Shields last week, Jenelle was up to 27 pounds, 6 ounces! Great news!

Today, Jenelle seems to be getting sick as she seems congested and stuffed up. As she was falling asleep tonight, I decided to crawl into bed with Jenelle and stroke her hair. She seemed to enjoy it as she was quiet, but awake. All of a sudden, I held my hand in front of her face and said, "Hold my hand Jenelle!", and you know what?... She grabbed it! Well OK, she didn't really grab it, but she made a noticeable effort to put her hand into mine. She did it not once, but 5 or 6 times! I even called Brett into to watch - we're so proud!

Have a wonderful weekend!

Photos of Jenelle's new school adventures!

Just wanted to share some photos of Jenelle's first week at school. Here is Jenelle taking her first ever bus ride! Jenelle rides the lift in her wheelchair.

Jenelle gets a window seat!

Here is Jenelle on her first day of school. This is a photo of the two little girls who are putting toys on her chest.

Here is Jenelle during circle time where her teacher is putting an object in her hand and making Jenelle hold the object - hand over hand!

And of course, here are the kids after trick or treating! Can't you just see the love?

Have a great week!

Another trip to UCLA

We made the drive up to UCLA on Thursday for another follow up with Dr. Shields. The appointment was pretty un-eventful, which is always a great thing. Dr. Shields was very impressed with Jenelle and felt she really looked better than she has in a while. In fact, when Jenelle gave him a laugh and a smile when he ticked her neck, he told his young resident, "I've been waiting over a year to see her respond like that!"

Remember a couple of months ago when I briefly mentioned that Jenelle's urine organic acid test results done in July had come back abnormal? Well, UCLA is still trying to figure out exactly what the results mean and Dr. Shields wants to refer us to Genetics as soon as possible. He was quite honest and said that with her abnormal results still pending, he absolutely did not want to put her back onto the Ketogenic Diet anytime soon. In fact, he thinks we may only ever revisit the Diet if and when we both agree that the potential risks outweigh the her current seizure state (i.e. he feels the diet could be potentially fatal to Jenelle, and until we know for sure, it is not worth the risk unless of course her seizures get so out of hand that they too could be fatal if we don't try something drastic.) While that is discouraging, he also felt that we are gaining great seizure control with the medications she is currently taking, and if this progress continues, we may start looking at weaning down these medications a few years from now.

Of course, Brett and Dr. Shields spent some time talking about the undefeated UCLA Bruins and both seemed pretty excited about "some big game" coming up on December 3 ;) I bit my tongue and didn't mention that my Father had gone to USC for undergrad. It's difficult to root for both teams when they are both doing so well and will eventually play each other… then again Jenelle is a Bruin fan for life because they have done so much for her. Should be a good game.

We had a bit of excitement this morning as Jenelle took her first bus ride to school. Unfortunately, because of a power outage in our neighborhood last night due to a traffic accident, one of the main streets leading to our house was closed off, and the school bus was 30 minutes late! I got some great photos of Jenelle getting onto the bus and will send them as soon as the power returns to our home so I can download the photos! Jack was very excited about the bus, and waved goodbye while yelling "Have a great day Boo!"

Thanks for the continued positive thoughts and prayers. I'll keep you posted!

Jenelle's 1st day at School!

Well, the long awaited update is finally here… Jenelle started school yesterday at the County program. Grandma Curran came with me to drop off Jenelle so she could meet her teachers in case she needs to pick up Jenelle some day. Grandma was quite impressed. It was absolutely wonderful, and Jenelle really seems to like it. She is definitely in the right place!

Three days a week "typical" pre-school peers (i.e. "normal kids") are in class with the special needs students, and yesterday was one of the typical peer days. After handing off all of Jenelle's supplies (3 day emergency medicine supply, diapers, formula, etc.) Jenelle's new teacher took her out of her stroller and put her on the floor where the other children were playing. Two "typical" girls immediately took notice of Jenelle and held her hands, and put toys in her hands trying to play with her. Jenelle just kept looking back and forth to each girl and really seemed aware that they were interacting with her. It was really cool because I've never seen Jenelle react like that.

After introducing Jenelle, we had a quick meeting with the teacher, nurse and principal. We will be meeting again in 30 days to re-address Jenelle's IEP and change her goals as needed. I talked about the "one thing" the District wouldn't agree to change at our IEP, which was placing Jenelle down as qualifying for "low incidence funding" (additional funding) because of her blindness, and they immediately changed it on her IEP. They told me they like to use as many recourses as they can. I am very pleased with this school, and I really feel they know what they are doing with children like Jenelle.

Later around 3:00 p.m., Brett and I went to pick up Jenelle (so they could meet Brett.) Because of Halloween, she was in her costume as they had a small Halloween party that day. Jenelle won "Best Dressed Doll" for her Raggedy Ann costume which made me very proud. She slept well last night, which means she was very active all day. Jenelle seemed happy to return this morning, and should start riding the bus sometime later this week.

Halloween was a big success for the kids. I have some photos to share later, as well as photos of Jenelle's first day. Thanks again for keeping us in your thoughts and prayers. I'll keep you posted.

November is Epilepsy Awareness Month!

The chosen color to represent the fight to find a cure for Epilepsy is purple. We encourage you to wear a purple ribbon, a lavender awareness band, or Jenelle’s bracelet during this month to help increase awareness against this condition that affects so many lives including ours. And if you have the means, we encourage you to make monetary donations to an organization called the Epilepsy Alliance of Orange County, (please send an email to JannaEpilepsyOC at aol dot com if the link is not working) the organization that directly supports our family and Jenelle. If not a donation to the EAOC, please donate to the Epilepsy Foundation or your local Epilepsy support group.

Here is some information that I shamelessly stole from the Epilepsy Foundation website to help further educate everyone about Epilepsy, and about Jenelle’s specific type of Epilepsy.

WHAT IS A SEIZURE?:

A seizure happens when the electrical system of the brain malfunctions. Instead
of discharging electrical energy in a controlled manner, the brain cells keep firing. The result may be a surge of energy through the brain, causing unconsciousness and massive contractions of the muscles. But if only part of the brain is affected, it may cloud awareness, block normal communication, and produce a variety of undirected, uncontrolled, unorganized movements. Most seizures last only a minute or two, although confusion afterwards may last longer. An epilepsy syndrome is defined by a collection of similar factors, such as type of seizure, when they developed in life, and response to treatment.

From this mixture of sources, leading experts in the field have arrived at the following estimates of the incidence and prevalence of seizures and epilepsy in the United States:

THE STATISTICS:

Incidence -- Seizures:

300,000 people have a first convulsion each year.
120,000 of them are under the age of 18.
Between 75,000 and 100,000 of them are children under the age of 5 who have experienced a febrile (fever-caused) seizure.

Incidence -- Epilepsy:

200,000 new cases of epilepsy are diagnosed each year.
Incidence is highest under the age of 2 and over 65.
45,000 children under the age of 15 develop epilepsy each year.
Males are slightly more likely to develop epilepsy than females.
Incidence is greater in African American and socially disadvantaged populations.
Trend shows decreased incidence in children; increased incidence in the elderly.
In 70 percent of new cases, no cause is apparent.
50 percent of people with new cases of epilepsy will have generalized onset seizures.
Generalized seizures are more common in children under the age of 10; afterwards more than half of all new cases of epilepsy will have partial seizures.

Prevalence -- Epilepsy:

Prevalence of active epilepsy (history of the disorder plus a seizure or use of antiepileptic medicine within the past 5 years) is estimated as approximately 2.7 million in the United States. Prevalence tends to increase with age.

326,000 school children through age 14 have epilepsy.
570,000 persons over the age of 65 have epilepsy.
Higher among racial minorities than among Caucasians.

Cumulative incidence (risk of developing epilepsy):

By 20 years of age, one percent of the population can be expected to have developed epilepsy.
By 75 years of age, three percent of the population can be expected to have been diagnosed with epilepsy, and ten percent will have experienced some type of seizure.

Epilepsy risk in special populations:

The basic, underlying risk of developing epilepsy is about one percent. Individuals in certain populations are at higher risk. For example, it is estimated that epilepsy can be expected to develop in:

10 percent of children with mental retardation
10 percent of children with cerebral palsy
50 percent of children with both disabilities
10 percent of Alzheimer patients
22 percent of stroke patients
8.7 percent of children of mothers with epilepsy
2.4 percent of children of fathers with epilepsy
33 percent of people who have had a single, unprovoked seizure

Remission:

70 percent of people with epilepsy can be expected to enter remission, defined as 5 or more years seizure free on medication.

35 percent of people with mental retardation, cerebral palsy, or other neurological condition will enter remission.

75 percent of people who are seizure free on medication for 2 to 5 years can be successfully withdrawn from medication.

10 percent of new patients fail to gain control of seizures despite optimal medical management.


How Epilespy affects our daughter Jenelle:

Jenelle’s type of Epilepsy is considered to be in the category of “Devastated” Epilepsy.

DEVASTATED:

Children and adults whose lives are devastated by epilepsy are likely to have epilepsy as a result of brain disease or injury that also impairs learning, memory, attention, and motor and emotional function. Their seizures probably started early in life and may never have been controlled despite the use of multiple medications and combinations of medications. They are likely to be heavily medicated; they may experience some retardation or slowing; have difficulty in maintaining family support and social relationships; require help in everyday living; and may be more susceptible to bouts of continuous seizure activity (flurries) and status epilepticus. People of all ages in this category have a lifelong need for services and are substantially limited in their ability to function independently.

The risk of seizure-related deaths is increased among people with poor seizure control and other neurological problems; sudden unexplained death occurs across all three groups.

Jenelle's seizures are most likely caused by something metabolic in nature and/or some type of birth defect or problem (ie: loss of oxygen or infection) that occurred very early during her development in the womb. Although she looks quite "normal" in photographs, Jenelle is severely mentally retarded and will always have seizures. This is not something she will simply “grow out of.”

Jenelle’s seizures began around the age of 8 months as something called “Infantile Spasms.”

INFANTILE SPASMS:

West syndrome and infantile spasms are two conditions which occur together so
frequently that the two terms are used interchangeably. West syndrome involves
developmental arrest and possible loss of developmental milestones and has a
distinctive EEG pattern called hypsarrhythmia.

Infantile spasms are clusters of brief seizures involving various combinations of flexion and extension of the trunk and limbs, most common in the early morning or upon wakening from naps. In the most common form, the body bends as the outstretched arms jerk forward -- so called "salaam seizures. The condition is often mistaken for colic, at least initially, because the babies double up during the spasm and cry afterwards.

Eighty-five percent of children who develop infantile spasms do so before the age of 12 months; most stop having spasms by age 5. During this period, 40 percent will have other types of seizures.

The most common causes are tuberous sclerosis and perinatal asphyxia (lack of oxygen). In 40 percent of cases, there is no known cause and these children have the best prognosis; causes that are symptomatic have the worst. As many as 20 percent die before age 5; 75 percent are mentally retarded; and more than 50 percent have persistent epilepsy, half of whom develop Lennox-Gastaut syndrome.

And sometime at around age 18 months, she was diagnosed with "Lennox Gastaut Syndrome":

LENNOX GASTAUT SYNDROME:

Lennox-Gastaut syndrome (also known as myoclonic-astatic epilepsy) is a combination of seizures usually including atypical absense seizures (starting
with automatic behavior without conscious control); tonic seizures (stiffening)
atonic or astatic seizures (drop attacks); mental retardation; a distinct slow spike-and-wave EEG; and onset between 1 and 5 years of age.

Some children are developmentally normal when the syndrome begins, but then lose skills, sometimes dramatically, in association with uncontrolled seizures. By age 6 most children with Lennox-Gastaut have some degree of mental retardation.

Children with Lennox-Gastaut syndrome typically have more than one type of seizure. The atonic-astatic (drop attack) seizures are most troubling because of the injuries caused by repeated falls. Many children wear protective helmets. The tonic (stiffening) seizures are most common during sleep, including nap time, whereas generalized tonic-clonic seizures (convulsions) occur most often on awakening.

Some of these children are prone to develop non-convulsive status epilepticus (a continuous seizure state that is associated with a change in the child's level of awareness. This requires medical intervention to bring it to an end).

As children with Lennox-Gastaut syndrome grow older, the types of seizures change. In most cases, the drop seizures abate. They are replaced by partial, complex partial, and secondarily generalized convulsions. Among teenagers with Lennox-Gastaut, complex partial seizures are the most common form.

This seizure syndrome is difficult to treat and often does not respond to the usual seizure medications. Other treatment choices may include the ketogenic diet, vagus nerve stimulation therapy or occasionally corpus callosotomy surgery.

Please "Think Purple" in November and try to spread the word about Epilepsy. Our daughter's case is one of the more devastating, however there are many people who are affected by Epilepsy and still manage a fairly "normal" life. Those with the occasional seizure also deserve a cure. Many do not have the freedom to drive, teens are often teased, and students have a hard time functioning in classrooms. Independence is a very foreign concept for anyone with Epilepsy because there is always the risk that a seizure will happen.

The spectrum of individuals who are affected by Epilepsy is wide; our Jenelle just happens to be on one extreme end of the spectrum. Because of this, we feel compelled to share her story in order to increase awareness for all.

Again, we thank you for your prayers and support!

Extra treats for Jenelle on Halloween!

Just a small update - It looks like Jenelle is going to start school on Monday, which is also Halloween. We had some delay in getting all the paperwork signed by her doctors, but now everything is in order and they are excited for her to start. Bus Transportation however will be delayed a little longer. I was told to anticipate this, so I'm not too worried. I wanted to pick up and drop off on her first day anyway, and I promise I'll take some photos to share. We also have an appointment at UCLA next Thursday, so extra treats all around! It looks to be a routine visit, but it will be nice to get some feedback on her new seizures.

Thanks for the support and prayers! I'll keep you posted!

Ghosts of Halloween past and present

Just a small preview of Halloween. The "old" photo is me and "Nana" (back in the day) at my first Halloween. Jenelle will be wearing the same costume this year, though I'm going to try to make it look more like Raggedy Ann than Bo Peep.

Just one more...

A photo taken by Aunt Nicki of Jenelle's smile as Grandma looks on.

Photos from Jenelle's Party!

The Birthday Princess is Three!

Big Brother Jack loves to help open Jenelle's presents!

Mommy, Daddy & Boo!

Jenelle enjoys her gifts!

Nana loves Jenelle!

Singing "Happy Birthday" to Jenelle! (Click on the thumbnail to play the video!)

Happy 3rd Birthday Boo!

We have a three year old in the house! This past year has been amazing, even with all the hospital stays and trips to the ER. I am really very excited for the months that lie ahead for our little girl. Jenelle's last day at the Blind Children's Learning Center was Wednesday, and they celebrated her birthday with some "birthday Jell-O" I prepared. We were sad to say goodbye to her teachers and therapists, and I know they will miss Jenelle very much. Starting sometime next week, Jenelle will be going to school five days a week (30 hours a week) and will be riding the bus. Who knew that she would start school before Jack! I spent a lot of time on the phone with the school nurse yesterday completing necessary paperwork and such and I'm so excited about her placement and truly feel it is the best place for her to be.

We've definitely had our scary moments this year with Meningitis, status seizures, infections and ultimately a G-Tube placement. We also made an effort to try the Ketogenic Diet, which seemed very promising but had to be stopped because her Jenelle's Meningitis. We added two new "diagnosis" to the bunch; Metabolic Acidosis and Failure to Thrive. And we have been given opportunity to see what life is like without daily seizures - even if for only two months. During everything that has happened this year, the biggest "gift" of all was not only finding appropriate seizure control, but that Jenelle finally found her laugh and smile. I had no idea that was so important, but I see the positive effect her laugh and smile have on us all. Children and friends who often overlook Jenelle knowing she was different, now stop to enjoy her laugh and smile. It has even helped the relationship between Jack and his sister - his favorite thing to do now is to make her laugh. Amazing.

Today we will celebrate Jenelle's birthday with a small party. She is feeling much better after her infection earlier this week - the antibiotic seems be working. This morning I sat her in my lap and she held her head still while I put her hair in pony tails. She used to never sit still for me like that. I whispered in her ear that she was my beautiful three year old and she smiled.

And not to leave big brother Jack out of this, I officially signed him up for Little League today! In case you didn't know, Little League is a big thing for the Curran Family. Grandpa Curran is the District Administrator for District 30, Grandma Curran volunteers a lot and of course, there is a baseball field named after the family in Northeast Santa Ana. Unfortunately, Grandpa can't bend the rules about the boundaries for Jack, so he won't be playing at Curran Field - unless someday he makes All Stars! He is currently enjoying swim lessons and piano lessons and will start Kindergarten next September.

Thank you all for the continued prayers and support. I will keep you posted!

Last day at school and an early birthday celebration!

Wednesday was Jenelle's last day at the Blind Children's Learning Center. Next week she will start at public school in the County Special Education program. I found this really great site that allows you to upload videos, so here is a clip of the birthday celebration (please forgive my singing) including Grandma holding the "birthday jello"... enjoy!



And since I found this video hosting site (please check it out at www.zippyvideos.com) I decided to show you one of Jenelle's new seizures. This is pretty mild compared to others she has had in the past. Look at her right hand that is twitching as she sleeps. The feet you see are Jack and cousin Trevor... we were trying to get them to move away and give her some room.



And I took this photo at school this morning. This is one of those photos I wish I knew exactly what Jenelle was thinking ... maybe she is saying "Mom, you're nuts!" Isn't she Beautiful?

Anniversaries v. Milestones

I suppose it is that time of year again. When I begin remember where I was and what Jenelle was doing last year, two years ago… three years ago. Two years ago today, we were in the hospital while Jenelle was in “status” - hoping she would make it home in time for her first birthday. Oh yes, Birthdays… those are really tough too. You realize your child is getting older, and yet it becomes so blatantly apparent that your child is so very far behind.

I’m not sure which is easier these days; anniversaries or milestones. The last milestone Jenelle actually met was laughing out loud. Most children do this at what… age 6 months? Jenelle was 2 and a half. Thank God for that though because I was about to lose my mind wondering if this child felt any emotions at all. It was probably the biggest highlight of the year (still holding out to see if she’ll start sitting up on her own before the end of the year.) The list of anniversaries for Jenelle gets bigger each year; her first MRI, her first EEG, the day of that phone call from the doctor that changed our lives forever and of course birthdays. I’ve learned to appreciate each anniversary as a reminder of where we’ve been, and of all the potential for where we can still go.

On one of my on-line support groups today, a Mother was remembering a horrible experience a year ago when her child seized uncontrollably for almost 2 hours. They were at an airport and had to be taken by ambulance to the nearest hospital… none of the usual methods to stop her seizures were working, and she feared her child was dying. Because we’ve known each other online for over two years, I too remember that scary day and how I cried and prayed for her daughter. I remember fearing that child would regress from the pro-longed seizures, but as it turns out she has accomplished more in this past year than most expected. Hindsight is a blessing, especially when you can appreciate your fear a year later, and know that the child is fine and doing better.

I supposed I prefer the milestones to the anniversaries. After all we’ve been through with Jenelle; we certainly do have more appreciation for those small milestones that she passes all too infrequently. Once Jenelle finally masters something she should have been doing at age 6 months, it feels like progress, and as if she may exceed our expectations now. Anniversaries are bitter sweet, and like milestones they come in and out of our lives unexpectedly and with great significance. I don’t acknowledge each anniversary out loud, but they are in my mind as the calendar dates fly by each day. A “big one” is coming in just a few days… Jenelle will be three on Saturday. Instead of tears of grief for the three year old child she is not, I have a tremendous amount of pride for the accomplishments she has achieved this year. It gives me hope for the coming days and for her potential in the future.

More seizures as the Angels lose!

As if the Angel's game weren't depressing enough, Jenelle started having lots of seizures last night sometime during the game. These were her "new" seizures in which she flutters her eyes as if downloading information in her brain. At first, my Mother in Law who was watching the game at our house kept commenting on how "tired" Jenelle was acting, then I noticed a patten and realized they were seizures. Normally, this was not a big deal because they were brief; however, at one point Jenelle finally fell asleep on the floor, and about a minute later Brett noticed her hand twitching. I was able to get a video clip of it and then called UCLA to find out what we needed to do. The hand twitching went on well over a minute - almost two. Unlike a long, big continual seizure it seemed she was beginning to cluster a lot so I was concerned. UCLA instructed me to attempt to wake her and if she didn't respond, then to give her Diastat. She woke up without a problem, but still felt to me as if she had some involuntary jerking going on. I called UCLA back and they suggested giving her 1/2 the Diastat dose to see if things stopped. I did, and she settled down a bit, but still had some strange movements. I took some more video clips and emailed Dr. Shields again. After the game as I decided to put her down for the night, I thought she felt hot, so I took her temperature to find out she was running 102. At least with that we have an explanation for the seizures.

Jenelle went to see Dr. Patel this morning (with a fever of 101.4) and she put her on an antibiotic and requested labs. At this point, we are suspecting a urinary tract infection. We went to visit our favorite phlebotomist and it was nice to hear that she thought Jenelle looked much more alert than before (considering Jenelle was actually cranky and very lethargic today.) I always amazes me how people notice the differences in Jenelle when they haven't seen her for a while. She is much improved overall. One poke got the blood we needed, but unfortunately we're still waiting for some urine (that darn bag system!) I may have to drop that off tomorrow morning if we get some! We waited a while, and I fed Jenelle but no luck.
After my appointment with Dr. Patel, UCLA called about the video clips. The hand twitching was definitely a seizure, and is (like we've been saying) new for Jenelle. I believe it is called a "complex partial", and it appears it is coming from one side of the brain (because only one side of Jenelle's body twitches.) Our next appointment with Dr. Shields is in 2 weeks on November 4. Since we know the fever increased her seizures last night, I doubt he'll need to see us before then.

This is Jenelle's last week at her school, and I feel so horrible that she missed a day! Her teachers are already sorry to have such limited time with her. The school will be celebrating her birthday on Wednesday along with a goodbye party! So sad, but yet so happy she is moving on. Jenelle will be three this Saturday, and we are celebrating with a small family party at home. Hopefully she will be well by then.

Please keep us in your prayers, and I'll update as soon as I hear more. Thanks!

Please send "get well" thoughts to a little girl named Maggie!

In the blog universe, I came across a post about a beaufitul little girl named Maggie. Maggie is currently in the hospital at St. Jude's in St. Louis and suffers from a brain tumor causing her seizures. She may be having more brain surgery tomorrow. Please check out this link and feel free to send Maggie some well wishes. I know how hard it is to be a parent in this role, so it is a wonderful feeling to give some of the love back to another family in need.

No news is good news!

Things have been going well with Jenelle these past few weeks, and I've been so busy I haven't had a chance to update which once again goes to show you - "no news is good news!"

On Friday I met with the School District again and we finalized Jenelle's IEP. The whole experience was not pleasant and I now understand why so many parents dread the IEP process. I will not go into too much detail with such a "public" forum but I think we have advocated well for Jenelle (Thanks mainly to my sister and our advocate Janna Moore at the Epilepsy Alliance!) Most of our "issues" were regarding how the actual IEP document was written, and really not in regards to placement or other services. At the meeting on Friday I brought with me three pages of typewritten "changes and corrections" and the District agreed to all but one of my suggested changes. In order to "get the ball rolling" to get the paperwork in place for Jenelle to begin at her new school on October 24, I signed the IEP. We've agreed to meet 30 days after she begins school to address other issues and revise goals if necessary.

In order for Jenelle to begin school on time, she has to have a physical before the 24th! Luckily, our doctor was able to take her in this morning as they are booked through the end of the month, and her 3 year checkup was scheduled for after the 24th. Jenelle is doing great weighing in at 26 pounds 4 ounces (a gain of 4 ounces since our last weigh in) and is 36 inches tall. We had been postponing "live" immunizations for Jenelle in the past because they are known to make neurological problems worse. However, after talking to Dr. Shields last week we both agreed that since Jenelle was going into county program and public school it is best that she get her MMR (Measles, Mumps & Rubella) and Chicken Pox vaccines now. Obviously we know where Jenelle is Neurologically, and her getting those diseases would be ultimately worse than any increased seizures she may experience. So Jenelle got her MMR and Hepatitis Booster this morning as well. Poor baby girl did not like the MMR - she cried when usually she doesn't.

That is all for now! Also to keep you posted, Jenelle's friend Sierra is doing well since her VNS surgery. Her Mom reports noticing that she has been able to stop seizures with the VNS before they get bigger - which is great news! Jenelle's friend Eli is also recovering well from his brain surgery over two weeks ago. Last update from his Dad is that he has had no seizures since the surgery! Great news for both, thanks for the extra prayers and for keeping us in your prayers as well! I'll keep you posted!

Postcards from Holland

Today I joined Postcards from Holland which is a community blog of parents with special needs children. I've found that Jenelle's Journey has been very therputic for me to keep up to date, and realized in finding Postcards from Holland that Brett and I are not alone. Please feel free to come meet these amazing families and read their stories. In some ways we are so lucky, and in other ways, others feel they are lucky after reading about Jenelle. Regardless, there are many others who are just as strong as me, and are just getting used to this place called "Holland."

Please feel free to read Jenelle's introduction here.

And, if you've never read "Welcome to Holland" by Emily Perl Kingsley, feel free to learn more about it here.

Photos of Jenelle's new bath seat

Here is a photo of Jenelle in her new bathseat. No, I usually do not bathe her in her diaper, I was trying to cover her privates!



Here she is being very shy...


And after her bath.

The "is it Friday yet?" update on Jenelle

Well, Jenelle has had a bunch of doctor's appointments this week and it is only Tuesday! Whew! I took Jenelle to the GI doctor on Monday and she has gained a pound since our last visit- yay! Recently, I've noticed that Jenelle is sometimes "choking" on her saliva - sometimes it is so bad I have to use a bulb syringe to help her get it out so she can breath. I asked the doctor if this was a common side effect from the G-Tube and apparently what I'm describing is reflux. Makes sense really - now that Jenelle is being "force fed" (for lack of better words) she is having some issues with the food she is eating. Jenelle's low muscle tone has always made it difficult when she vomits, so really this is why it appears she is choking. So, Jenelle is going back on Zantac (She has never had reflux issues before, but has been on Zantac while she was on ACTH and recently when we thought she had some stomach upset after Keto.) Jenelle also got her new AFOs yesterday (pink again!) I forgot my camera - sorry! Today we saw her Kidney Doctor and her bi-carb level is low again and down to 18. This is not critically low, but she'd prefer it be higher. The doctor is not concerned at this time because Jenelle is so alert, so we will need to re-check the levels in a month or so.

As far as seizures are concerned, we haven't seen a grand mal since 9/15, the day we started Tranxene. We are 12 days seizure free (grand mals) and counting! However, our daycare provider has been telling me about some "weird things" she is seeing that I got to witness first hand today. Jenelle tends to roll her eyes up into her head, is unresponsive and her eyelids flutter for a few seconds (almost as if she were downloading a program in her brain.) Daycare thinks it is a seizure, and unfortunately after witnessing it myself this morning, I must agree. I put in an email to UCLA today and will update you when I hear something more. Because they are not lengthy, I did not feel it was urgent enough to warrant a call to the Neuro.

So, that is about it. The IEP still is not finalized as we still have a few things to work out. Thank you for the continued prayers - I'll keep you posted!

Jenelle's IEP

We had Jenelle's "IEP" (Individualized Education Plan) meeting yesterday with the Tustin Unified School District. The meeting went a little over 3 hours, and there were 15 people in attendance, 8 from the District, and 5 who were in attendance at our invitation (Jenelle's PT, OT, Pre-school Teacher, our Regional Center case worker and our Advocate from the Epilepsy Alliance.) On Thursday I had the opportunity to read Jenelle's Assessment results and tour some different school programs. It was tough, and took me a little over an hour to read the results. A friend commented that, "knowing something in your heart and seeing it in writing are two different things." and that couldn't be more accurate. Overall, Jenelle is more than 75 - 80% delayed in all areas with scattered skills. Most of the IEP was discussing these results and potential goals for Jenelle for the coming year.

Although Brett and I have not signed anything officially, we pretty much have come to an agreement with the District that the best placement for Jenelle is a program at Heideman Elementary in Tustin that is provided by the County of Orange Department of Education. The program is 5 days a week from 9 to 3, with transportation included. This program has all sorts of equipment that can benefit Jenelle including standers, position seats, visual equipment, etc. They also have a full time nurse who is well trained in using Diastat and feeding through the G-Tube. The District wants to add speech therapy and continue Jenelle's physical therapy with her current therapist. There are a couple of things to "fine tune", but other than that we have a good idea of how things will change for Jenelle come October 24. It sounds like Jenelle will be getting lots of intense therapy to work on things like sitting up and using her hands. We will be sad to lose her therapist at Blind Children's, but this will be a great change for Jenelle.

In other news, Jenelle got her bath seat on Monday and has been enjoying her bath now that she can sit safely in the tub. We did not have to travel to UCLA on Thursday like anticipated. She continues to remain seizure free since last Thursday, and Dr. Shields does not want to see her as long as she remains stable. I also got the call late Friday that Jenelle's new AFOs are in, and we'll be picking them up on Tuesday.

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

The hard truth about the mentally retarded...

Sometimes you just need a good cry especially when the hard truth is in writing and is staring you in the face. It just took me an hour to finish reading Jenelle's Assessment report from the District. While I am used to hearing terms like "Skill Level is at a 0 to 4 month level", it is not easy to read. Physically on the surface, Jenelle does not look mentally retarded. However on paper, she is the exact description of a mentally retarded child. Again, this is no surprise, but never easy to hear. So I had a good cry, and now I can move on. Sometimes I regain my strength from days like this.

I toured a county program this morning, and the one offered by our school district. At the county program, the kids looked like what you would expect; they were in wheel chairs, they wore AFOs, they had G-Tubes and Tracheas and they "looked" mentally retarded. But they were happy, and they were functioning, they were communicating and they were learning. After seeing the County facility, I went to observe the District's special needs pre-school program. While the facility was equally as nice, I actually had to ask which kids were the "special needs" kids because they were walking, talking, playing and actively aware of their learning environment. I did observe one autistic child throw a tantrum, and shamefully told myself to be thankful we did not have similar issues with Jenelle. A horrible thought, I know. But, the choice is crystal clear, Jenelle is not ready for the district's program, and would get the most benefit out of the county program. She may not look it, but she is mentally retarded for all intensive purposes. Sure, it's not easy to accept, but in reality this is the best place for her to go.

Tomorrow is Jenelle's IEP, and I'm told the District is going to recommend she continue all of her therapies (basically everything.) It doesn't look like it will be much of a fight. We can only hope it goes this well. I'll keep you posted.

5 Days Seizure Free... and counting!

Just wanted to send a quick update to let everyone know that Jenelle went all weekend without a seizure! So we are now "5 days seizure free" and counting (and knocking on all the wood I can find as I type this!) This could mean that the new seizure med is helping, and that in fact the "new stuff" is seizures.

We are tentatively supposed to see Dr. Shields on Thursday, and Jenelle's IEP with the School District is on for Friday - so far 14 people are scheduled to attend, is that some kind of record? :)

Also, please keep in your prayers Jenelle's friend Sierra who had a VNS implanted today at CHOC, and Jenelle's friend Eli, who is having brain surgery at UCLA on Thursday to help stop his seizures. Jenelle's friend Serena is scheduled for surgery at UCLA as well - I just can't remember the date. These families are amazing and strong and could use some good news seizure wise for a change! Thanks for the continued prayers for Jenelle - I'll keep you posted!

Friday update on Jenelle

Just wanted to send a brief update so everyone can "breathe easier" over the weekend about Jenelle, and also asking for some extra good thoughts and prayers to get us through the weekend. Jenelle had more seizures Thursday morning, and I was on the phone most of the morning with UCLA trying to determine our next step. Dr. Shields is very concerned with these "new" seizures because they are different than what we usually see with Jenelle. We are also seeing some "old" seizures as well, so that is troubling.

Some of Jenelle's "new" seizures have "new" characteristics than we usually see like involuntary twitching and at times "tremor" like movements (like what you see in someone with Parkinson's.) Dr. Shields is not sure if these are seizures or simply something behavioral. He added a new drug (for Jenelle) last night called Tranxene and said it if stops the movements, then they are most likely seizures. He wants to see Jenelle next Thursday and get another EEG. If she has another lengthy seizure between now and next Thursday, Dr. Shields plans to admit her to UCLA Medical Center on an emergency basis for observation so he can get an EEG and MRI done quicker.

Since taking her new medication last night, Jenelle seems to be doing well. When I picked up the drug at the pharmacy, it said it was used to treat "alcohol withdrawals" as well as anxiety and seizures. Those descriptions always make me laugh! The good news is that I haven't had any calls from daycare today, so that is usually a good thing. We're just going to try to keep our fingers crossed and see if we can make it to Thursday without needing hospitalization.

I'll keep you posted - thanks for the continued and extra prayers for the weekend!

Some photos...

Jack woke up the other morning and asked if he could get in bed with Jenelle to wake her up. This was the result! Adorable!

Here is Jenelle getting "casted" for her new AFOs. They literally put her feet in casts to get a mold. Interesting process.

After I took the photo above, I looked at Jenelle and said, "Say Cheese" - she was obviously looking right into the camera, and maybe understood!

Jack's first bike - moments before his first crash!

The streak comes to an end!

Well, it was great while it lasted! Jenelle's many weeks of being "seizure free" ended yesterday morning with two massive grand mals, back to back both lasting almost 4 minutes. It was quite a scary situation in that her school "almost" had to call 911. Brett dropped her off yesterday morning at school because I had to be in trial in downtown Los Angeles and was traveling with my boss. He called my cell phone as we were almost in downtown L.A. with the news. My boss immediately suggested I take Metro Link back to Orange County, but fortunately it was not necessary.

Unfortunately, yesterday's seizures occurred at the beginning of her usual joint session with her Occupational Therapist and her Physical Therapist that was being observed by a Therapist from the Tustin Unified School District in order to prepare for her upcoming IEP. After timing the seizures, the school contacted Brett and he instructed them not to call 911 unless she had another seizure. Luckily she did not have another seizure and Brett was able to pick her up from school and take her to daycare. As Brett was traveling to pick up Jenelle at school, I was on the phone with the on-call Neurologist at UCLA getting instructions on whether or not to give her emergency Diastat medication. As per UCLA's instructions, Jenelle's daycare provider gave her the Diastat (even though she was not seizing) so that her seizures would not return or "cluster" as they are prone to do. The school refuses to administer her emergency Diastat so this is why it wasn't given during the second seizure. We have known about the school's policy and had not had an incident at school before yesterday.

At the end of the day, we were lucky because if they had called 911, surely this email would be all about Jenelle being admitted to the hospital for observation (and you know how much Brett and I hate being admitted to that place!) Her therapists handled the situation extremely well, and we are very appreciative. UCLA is concerned, and I'm waiting to hear more from her doctor after sending an update email late last night. Jenelle has not had a grand mal since March of this year, and as always, when "old" seizures reappear, we want to know why. As of last night, Jenelle was back to her usual self; rolling around the house, making sounds, laughing and smiling. She seemed pretty good this morning, and I took her to daycare instead of school just to be on the safe side as her daycare provider is very experienced in how to handle her seizures. So far, no calls from daycare today - so I assume all is well.

I spoke at length with her Occupational Therapist last night and she did tell me some wonderful news. When Brett dropped off Jenelle yesterday morning, her OT put Jenelle in a sitting position. As Brett was leaving, the OT said to Jenelle, "Daddy is leaving, let's wave bye bye", and sure enough, Jenelle looked at Brett and waved in her usual way! What a wonderful achievement for her to demonstrate (especially in front of the District) and it seems she really is aware of her surroundings, and really knows her Daddy!

I know I promised photos with my next update, but obviously I didn't have the time or energy to upload them last night, so you'll have to please wait until the next update. I got a call from the Tustin Unified School District and Jenelle's IEP is tentatively scheduled for September 23 - much sooner than I expected! I called my sister last night (who works in Special Education) and asked if she thought it was a bad thing that the District therapist observed Jenelle like this, and she made me feel better by saying it was probably a good thing because "this is who Jenelle is - seizures and all!" This is true - and it seems Jenelle wants the District to know everything little thing about her - the good and the bad! So today is hopefully "day one" of a new stretch of "seizure free" months ahead. And being the superstitious "Seizure Mom" that I am, know that if you don't hear anything its probably a good thing! ;)

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

Jenelle's School District Assessments

We met with the Tustin Unified School District on Friday, and Jenelle began her assessments and evaluations; Physical Therapy, Occupational Therapy, Speech Therapy, the School Nurse and Adaptive PE (not sure what that one is.) She still needs a vision assessment. It was a very long morning, and Jenelle slept well on Friday afternoon. These "assessments" are never easy emotionally because you really get a sense of how far behind your child is developmentally. However, I've been through these enough the "difficult questions" don't phase me as much. I'm well aware of what Jenelle can and can't do, and what she should be doing. Jenelle's abilities are quite scattered, and there does seem to be some slight improvement since she had benefited from seizure control. We are supposed to have our "IEP" in two weeks (Individualized Education Plan - some of you have asked.) Of course Jenelle charmed them all, and they all agreed she was beautiful.

After a long nap, Jenelle was pretty active the rest of Friday night. However, Saturday morning she woke with some congestion and a slight fever. Both Brett and I were sick this week (Brett had Strep Throat and our doctor just sent him home with medicine for me too!) So Jenelle seems to have our cold. She slept a lot on Saturday, and seemed to perk up early Sunday Morning. She is still congested, but doing well.

Last Wednesday, Jenelle was fitted for a new pair of AFOs (Ankle - Foot Orthotics (supports)). The man who casted her legs was the same who did her first pair, and he was quite impressed with her improvement. It is always so encouraging to hear others who haven't seen her as frequently see her improvements.

And in other news, Big Brother Jack got his first bicycle. After it took Brett an hour to put it together, he went next door to show the kids next door. Then 30 minutes later he had his first "crash" when he and our next door neighbor crashed into each other. He was fine but shaken. He is very proud of himself and knows not to ride in the street and to wear sneakers and his helmet. I promise to send photos with my next update.

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

Two Years ago ...

Two years ago we got the call that changed our lives forever. It is a bitter sweet anniversary, and one with lots of significance. It seems almost strange that it was only two years, as the road seems so much longer, but we were fortunate to have almost 10 months of "bliss" thinking Jenelle was just a little delayed, and that she would eventually be "normal."

I still remember every detail of that phone call that day. My surprise that the doctor called so soon after her EEG. My "happiness" (and ignorance) in thinking that seizures could be easily treated. And then I searched the internet about "Infantile Spasms", and knew our lives were changed forever.

It has been a long road since that call. Times we hoped we found a drug to make her normal, times we hoped she would just sleep through the night instead of being on a junkie high, and times we thought we'd lose her. Her development has been slow, but these past two months of being "seizure free" have done so much for her. And we don't know what we're doing right! (But we'll take it!)

The one "gift" we now have since that phone call two years ago is her laugh and her smile. Thank you God for that! There were many times I thought I would have to learn to accept her staring at me with that blank stare, wondering if she was feeling happy. Now sometimes, I get a giggle or smile as she wakes, and it makes my day!

Jenelle will never be "normal", but she is my Jenelle. I would not want to relive these past two years, but I also wouldn't do them any other way. Life it just difficult sometimes, and then you just laugh and move on.

Pre-Labor Day Update on Jenelle!

Last weekend we were invited to a pool party. Hours before it was supposed to start, the hostess called to inform me that all three of her kids were sick (vomiting). We choose to stay home to keep Jenelle away from germs as she needs to be well these next two months to do her best on all her assessments. Imagine my worry when she started running a slight fever on Monday! "We missed the party and she still got sick anyway" was my first instinct. The good news however is that I took Jenelle into the doctor on Tuesday morning and she is merely teething! Yay!

After that the week went really well for Jenelle. Also last weekend we took the opportunity to take down Jenelle's crib and move her to a twin bed enclosed with safety rails. Of course, it took me 3 hours just to pick out new sheets for her bed. She is such a big girl now as you can see in the photos below.

And more good news - I got a glowing report from Jenelle's Physical Therapist yesterday. She was so excited because she has really been seeing improvement with Jenelle in possibly sitting up and head control. Jenelle really needs her AFOs (ankle foot supports) because she has enough strength to continue to try to walk. I was worried because it took a long time to get her old pair, and was happy to come home to a letter from our insurance last night authorizing a new pair! We have an appointment next Wednesday to get her casted for new AFOs. (I'll make sure to bring my camera this time!)

We hope everyone has a safe and pleasant Labor Day Weekend and thank you for the continued prayers - I'll keep you posted!

The extra bed rail...

I felt more comfortable adding an extra rail to Jenelle's bed. It is much more secure now. She loves all the room to roll around, and doesn't hurt herself anymore.


I'll post another update this afternoon. Just wanted to upload this photo while I was at home.

Terrible Twos

A Happy 3rd Birthday to Lily.

Jenelle's friend Lily celebrated her 3rd birthday on Sunday, and today her web site journal was update with the most beautiful letter from Lily's Mom. I felt compelled to shart it with all of you who have come to know Lily through us. This year has been horrible and wonderful for us as well. I guess its just the terrible twos!

Jenelle's Big Girl Bed!

My Baby Girl is growing up! Jenelle kept getting her legs caught in her crib, so we decided to try some new bed rails and Jack's old twin bed to see if it would work. Jenelle seems to be very happy, and almost seems aware that she is a "big girl" now!

The IEP Process Begins!

Friday we had our "first" official meeting with the Tustin Unified School District to begin Jenelle's IEP Process. In the next two months (and hopefully before her 3rd birthday in October) the District will have their own assessment team of various therapists, psychologists and specialists evaluate Jenelle to determine what services she will need. The meeting yesterday was to discuss this and sign authorizations allowing the District to proceed. I've heard from other special needs parents, and from my sister (who works in special education) that IEPs can be very intimidating. This meeting was not, but it was an eye opener looking at all the issues we need to address for one little girl.

Once the District has done their assessments, we will have the "official" IEP meeting to discuss the results, determine Jenelle's goals and "agree" on services to be provided (speech therapy, occupational therapy, physical therapy, pre-school, vision therapy, etc.) As I've mentioned before, the local school district takes over funding at age 3, and therefore determines what services and where for Jenelle. Being that Jenelle's issues are pretty significant and her needs are many, we literally authorized almost every type of evaluation you can imagine. Its going to be busy these next two months.

Fortunately last night I went to the our local Epilepsy Parent Support Group meeting and listened to a Special Education Attorney give a presentation on IEPs. Thank goodness I work in a law firm, because he spoke in terms I could understand. What a valuable presentation and what perfect timing! Speaking of which, I wanted to relay that our local Epilepsy group (the one which held the Freedom Walk last year) has gone though some changes. A couple months ago, this group broke away from the Epilepsy Foundation of Southern California to become their own "independent" group now called the Epilepsy Alliance of Orange County. This group will operate completely on its own and gets no money from the Epilepsy Foundation of Southern California nor the National Epilepsy Foundation. Becoming an "independent" organization is the first step to becoming and/or applying for affiliation with the Epilepsy Foundation (basically they have to prove themselves financially before being approved.) So be warned that you might be getting emails from me in the future about garage sales or car washes being held to raise funds for the Alliance, and of course we are having another Freedom Walk in May. Basically nothing has changed with the group - same services, same wonderful presentations, same support group - just a different name, and a new effort to raise money to help provide local services to those affected by Epilepsy in Orange County. The group first event is a free Epilepsy Seminar the first weekend in November at UCI for parents and doctors. Brett and I are very thankful to this group for all they done to support us in the past two years, so we'll be supporting them wholeheartedly. Please let me know if you are interested in making donations to the Alliance. I'll see it gets to the proper people. ;) I'll be linking to their web site when it is up and running in the near future.

And of course, Jenelle is doing very well right now. She has been "seizure free" for quite some time, and we aren't exactly sure why. We'll take it though - its so very strange to think we have gone from 20 to 40 seizures a day to none. I keep expecting to find her seizing when she is staring off, but usually when I call her name to check, she will turn to look at me, or give me a sign that she is there. She seems to be benefiting from the break in seizures, and those who have seen her recently they tell me they really notice a difference in awareness, body control, and alertness. I failed to mention in my last update that Jenelle has also had a growth spurt, which could be the reason for the loss in weight. She has grown 2 inches, and is now almost 36 inches long. She is doing well with the slow increase in calories and is very happy all the time.

It is so nice to send positive reports - I'm glad you all enjoy them too! Thanks for the continued prayers. I'll keep you posted!

A Fantastic Article!

I wanted to share this article (click title above) as it is an interesting view from a Neurologist at Harvard about patients with Epilepsy. In case you didn't know, Epilepsy is often referred to as "E" in the world of those affected by it.

And, although I don't link to it, this is it! My home away from home, my support group, my friends, and fellow warriors again the E Monster! This is the place I've met Lily, Langan, Jason, Cloe, Jake, The Champ, and many others. I'm glad we've caught the attention of a doctor at Harvard... Who knows, maybe our doctors will start listening more to what we are saying, and will trust that we can understand!

I've always kept this place a secret. I consider it my own private and confidential support group. However, this is the first link I recommend to someone who is new to Epilepsy. There should be a place like this for all afflictions in the world, not just the Neurological ones.

Well done!

Cute as a Mic-key Button!

And there it is! Just like that!

We took Jenelle into see the GI doctor today to get her "low profile" mic-key button. They warned us that it would be painful, because the temporary tube she had was being held in place by a plastic disk. They literally had to "pull" it out of her. She actually did better than Mommy & Daddy, who left the room when given the opportunity, so we did not witness the actual "pulling" though you could hear her down the hall! (BAD PARENTS!)

So she has her new button, and that is the good news. The bad news is that with all of Jenelle's recent activity, she has lost 2 pounds! :( She is back to 24 pounds, and has only gained an ounce since we last saw the GI doctor. Really the bad news is not so bad because she lost weight because she is more active, but they want her to gain weight, so we have to increase her calories with three extra cans of Pediasure with fiber.

I haven't mentioned this yet, but, Jenelle is no longer eating food by mouth - something we were hoping to avoid. I'm not sure why - if she has lost skills, or if she is simply not interested because she is so full from her night feeds. My biggest worry is that she is regressing, which is really just "mommy worry" because she is doing so many other new things, this is probably not the case. The other is that she has not been eating well by mouth since her status seizure in May, which could mean she has lost skills from that pro-longed seizure. We will address this issue further with her Neurologist next time we talk.

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

When does it really start?

On one of my on line support groups, a Special needs Mom talked about how her daughter's second day at her new school "broke her heart." The child is only 3, and actually is more advanced in many ways as compared to Jenelle, and yet, the other 3 year olds laughed at her and "mimicked" her strange movements and noises. This was only day 2 of the "new school", but as the Mommy said, "She fights so hard to do what comes naturally to other kids. She has been poked and prodded and tested and studied. Does she have to be picked on, too?" My heart broke instantly as well.

At age 3, all special needs children go into the school system - for Jenelle, this will happen in October. Though we know our school district will pay for Jenelle to continue her therapy at Blind Children's, we have been warned that they may decide to keep her in their programs instead, thus Jenelle will be subjected to "inclusion" type classrooms as well. Though Jenelle is already amongst "typical" kids in daycare, I fear the school setting will be very different. Kids will be kids, and they will tease.

Until I read the story yesterday, it hadn't really occurred to me that it can start as early as age 3... The teasing. I'm not sure I'm prepared for it. In many ways, I hope times have changed, and that kids are more tolerant and mature. But I realize this will eventually happen.

Today was a better day for the child and the Mommy. It takes some adjustment - but I know, it takes the heart a lot longer to heal.

Holy Itemization Batman!

Got the Itemized Bills for Jenelle's hospitalizations this year for my AFLAC claim (go ahead, say it again like the Duck!)

$58,368.34 for 8 days in the hospital in May. And that does not include the doctor fees or lab fees.

Thank God for insurance! Unbelievable!

Oh those curls!

Lazy mornings

I have been very lazy this weekend - sleeping in as long as possible (which means letting Jack watch Pooh's Heffalump Movie twice so I can get an extra two hours of sleep) and napping until 7:00 p.m. Luckily Brett has been letting me do this, as he knows I'm still nursing that cold.

This morning, both kids were up at 6:30-7:00. Jack was content to watch Pooh again, and we usually just leave Jenelle in her crib as she won't get hurt there and can move around to her heart's content. Around 9:00, Brett brought Jenelle into our bed and left her lying next to me. Half asleep, I put my arm over her tummy - in part to hug her and in part to keep her on the bed. Jenelle's constant moving makes it not so easy to cuddle these days. So, her kicking, and moving and rolling from side to side eventually forced me to wake up. I tried to pull her into me to spoon like I do sometimes with Jack, but it just doesn't work that way with Jenelle. She cannot stay still in one place. So I kept my arm over her tummy, and tried to hold her hand or give her a kiss now and then. This is our way of cuddling, which is not really touching at all. She seemed to be enjoying it though and at times I could get a giggle when I tickled her ribs.

As I started to realize that I may never get to truly cuddle in bed with Jenelle on a Sunday morning like I can with Jack, she rolled over onto her tummy, looked me straight in the face and smiled. Her curls were tossed here and there, and her smile showed such peace and love. Though it may not be what I'm used to with Jack, it was special time with Jenelle none the less. After the smile, she rolled onto her back and resumed her kicking and rocking. Sometimes I think God is listening to my thoughts, because he seems to give me what I need most in Jenelle just when I'm about to give up.

I'm still moving slow this morning, and the only thing that got me out of bed was knowing Jenelle needed her medicine. Cuddling and Spooning may not be what I'm used to, but her smile lets me know it is special to her as well.

Jenelle is feeling better!

Good news is that Jenelle is better, and even better news is that we avoided the ER and hospital! Thank you all for special prayers and thoughts this week. I was going to send a brief update yesterday, but when she woke up, she wasn't as cheerful as she was the day before, so I was concerned I might be jumping the gun. After starting Anti-biotics on Monday (as a precaution) she snapped back into our new giggling girl mode and seemed to be back to normal for Tuesday and Wednesday. I guess she must have worn herself out on Thursday - my only explanation for her being quiet.

Jenelle is also moving quite a bit more lately. She rolls anywhere, including from the living room to the kitchen, and down the hall! I guess this is her way of getting around the house! Other than that, not much new to report other than she was very cute this morning as I dressed her in a pretty pink dress. I swear, we have a "girly girl" who loves to wear dresses. I only get giggles when I dress her in dresses!

Have a great weekend and thanks again for the prayers! Next week is the Mic-key button - I'll keep you posted!

Its all about the numbers - right?

I was just reviewing my calendar and making a list of various doctors appointments, ER visits, hospital stays and out-patient things for Jenelle. I wanted to compare this list to my co-payments and claims to AFLAC (yes, let's all say it like the duck!)

30 visits to doctors
7 trips to the ER
5 days in PICU
4 hospital stays
2 out patient procedures (with a 3rd scheduled for August 18)
2 consultation visits to "other" experts

On the up-side, Jenelle has only had 2 grand-mals this year! Unfortunately her other seizures are too numerous to count - but I think there were at least 6 to go over 5 minutes (ie: requiring Diastat) and of course and most unfortunately 1 status seizure.

All of these numbers for my sweet baby who is 2 years, 9 months, 2 weeks and 4 days old! And its only August! ;)

8/8 Update on Jenelle

Sorry that it has been a while since our last update, but Jenelle has been doing really well up until yesterday when she started to run a low grade fever and was lethargic. It appears she has caught my summer cold that kept me at home in bed a day or more last week (which also is my other excuse for no updates!) The good news is that although she is lethargic, we haven't seen an increase in seizures. We've been on top of giving her Tylenol and Motrin to keep her slight fever down and Brett is taking her in this afternoon to Dr. Patel to make sure her ears are clear of infection. If we can keep her fever at bay, hopefully her seizures will stay calm as well and we will not need to make any trips to the ER (our favorite place in the world!) Please say some special prayers for Jenelle this week that she can get over this cold quickly!

In other news I thought I'd give a small update on big brother Jack - he has been hysterical these past few days. We are really enjoying this age of 4 1/2 as it seems he has so many funny comments to make about life in general. Jack attended Vacation Bible School at St. Paul's last week and really enjoyed it. The kids gave a concert last Friday and Brett and I were proud of Jack, who was the loudest kid in the group, and also the one who was always just a bit behind in the songs. It was hysterical when the group sang a song about "you and me", and during the pause before the next line Jack threw both arms into the air and said, "AND ME!" It almost looked like it was planned it was so perfect! After the concert I took him for ice cream and as we drove past the bank, Jack asked me if I needed to get money. When I told him that "Daddy gave me some money" Jack responded with, "That is so sweet!" The next day when the family took a trip to the ATM, Jack said to Brett, "Daddy, it is so nice of you to share your money with Mommy!" Which of course had us rolling with laughter. He loves to tickle Jenelle and make her laugh and has really been a joy this summer.

Brett just called to ask me what anti-biotics Jenelle was allergic to, so without finding out any details, its fair to assume she probably is fighting off an infection of some sort and will be on the mend soon. She has an appointment with our GI Doctor on August 18 to get her permanent "Mic-Key" button for the G-Tube. Many of you have asked why it is called a "Mic-key" button, and the only answer I have is that that is the name on the box that it came in!

That is all for now. Again, please keep Jenelle in your special thoughts and prayers this week that she gets well soon and that we can hopefully stay away from the ER a little longer. Thanks so much - I'll keep you posted!

Mental note to self...

Do not go to funerals when your child is in the hospital OR on your wedding anniversary! Well, as you should know, Jenelle is not in the hospital and is still doing fine, so yes, we went to a funeral on our wedding anniversary. Brett was very moved by it in a profound way and said it was inspiring to be reminded of lifelong love on our anniversary. Ok, whatever.

The funeral was for the mother of a friend's wife, so someone we had not met. She had a wonderful life with 6 wonderful children and 11 wonderful grandchildren. She fought a long battle with cancer. Her husband spoke and said, "she touched my life deeply" and I couldn't help but think of Jenelle.

You often wonder how your life will affect the lives of others. Or, what would have happened if I hadn't gone to school here, or worked there. With Jenelle, I have the rare opportunity to see how her life changes and affects others. She inspires people we don't even know because my email updates are passed along to the masses, or people have found this blog.

Yes, I love Brett. He has touched my life and changed me in many ways, and given me confidence to be the person I am today because of his love. But Jenelle has truly touched my life deeply. Though I know what my life was like without her, I wonder if I would still be the same if she had never been born? Perhaps. But I am a better and stronger person for knowing and loving Jenelle. She has touched my life deeply and has changed me in ways I may never know.

And getting back to that "mental" note to my self (and in case you hadn't figured it out this is not an email update.) Funerals are never easy, and I am of the belief that you should attend to support the living left behind. Yet with a child like Jenelle, I find myself crying for a woman I never met simply because I am reminded of the beauty in life because of Jenelle. Pretty amazing huh?

Is she cute or what?

Today was Jenelle's last day at the Blind Children's Learning Center as they will be closed for the month of August. She will return in September, but we are not sure if she will remain there after her 3rd birthday in October. As I dropped off Jenelle today, this photo was in her cubby. I know it was taken recently, because Jenelle has only recently been smiling like this.

I went to work and saw a fellow co-worker in the elevator on my ride up to the 13th floor. I proudly pulled out this photo of Jenelle to show her, and she gushed over it as I knew she would. A man in the elevator who did not work at my firm peeked over her shoulder to check out the photo. He said, "She's a real cutie, and very tall - she'll be a handful when she gets older." The co-worker and I just smiled at each other and agreed, but both knew that she would be a handful in "other" ways he did not.

There are many times when I wonder just how much I should say. Sometimes I offer information like, "Well, my daughter is delayed" or if I have more time I tell people she has seizures. Sometimes when I give each and every full blown diagnosis and problem attributed to Jenelle, I wonder if people think I'm telling the truth! Really, there is only so much you can tell a perfect stranger about Jenelle while riding between the 1st and 8th floor where this man exited. Yet today it felt good to respond as if she were a normal child, because she certainly looks like it in this photo!

Jenelle continues to do well seizure wise, and I weight her last weekend and noted that she has gained 4 1/2 pounds since the G-tube was placed. Last week I went to dinner with friends and took Jenelle with me. She cried when I wasn't holding her, which made it difficult to enjoy dinner. However, it was inspiring to see a true "two year old" response from our girl.

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