Jenelle had her first session with the Physical Therapist today who met us at home to work with Jenelle. After a few minutes of working with Jenelle, she began to become fussy and show that she was upset. The therapist said that is normal because you are basically forcing the baby to start doing things they don't normally do. She worked with Jenelle until she wouldn't stop crying, which indicated that Jenelle had had enough. Most of the therapy involved stretching muscles, and working with her hands and feet to improve her sense of feel with different textures. Our short term goal is to make Jenelle more aware of her body (and I thought girls didn't become self-conscious about their body until they hit puberty!) and to begin to grab and hold things. We are also trying to strengthen her trunk muscles so that she can hold her self up a little better. This therapist will continue to come to our home once a week until we have our next evaluation with Regional Center in November.

We have an appointment with the Pediatric Opthamologist for July 8. They wanted to wait until after Jenelle's MRI because they will need to see it to help determine a diagnosis. In the last month, we've started to notice that Jenelle has an eye that points inward, similar to what Brett had as a baby. We hear things like that can be corrected with patches, glasses, and sometimes even surgery. We'll know more on the 8th.

Brett and I are seeing improvements, Brett thinks in some areas she is starting to act like a 4 month old. On June 22, Jenelle finally rolled over from her tummy to her back, and is also getting her butt in the air a little more while on her tummy. Its like she wants to crawl, but the upper body strength is pretty non-existent. Also last week, Jenelle was lying tummy down on my chest and grabbed at my shirt to put it in her mouth to chew on (she is teething). I've never been happier to wear a shirt wet with drool as this was a first for Jenelle. She also is making more efforts to put a hand on her bottle, and even pushed it out of her mouth recently when she was full. These are huge improvements!

We met with Regional Center today to discuss Jenelle's ongoing Physical Therapy plan (Her Individual Family Service Plan, or IFSP). Jenelle will receive Physical Therapy for a hour a week, hopefully starting as soon as next week. Regional Center has been wonderful, but we have to "jump through hoops" in the way they process things, so it does take some time. The Physical Therapy will be in home, and will involve us working with her throughout the week. Our long term goals over the next 6 months include getting Jenelle to "sit up" unassisted, feed herself a cracker, show anxiety when not around familiar faces and to play with her toes.

At this point, we are starting to see some improvement in Jenelle since her 6 month check up last April. She is now bearing weight on her legs (especially after we have been working with her on this) and does grasp at the rings we've hung on her infant carrier. We also got the referral to the opthamologist, but when we contacted them about an appointment, they said it would be best to wait until after her MRI, as the opthamologist would want to see those results as well. We also scheduled Jenelle's MRI for July 1, 2003, which is the soonest appointment they had available.

We had our first evaluation today with Jenelle's Neurologist, Dr. Steven Phillips. Because of a connection with a very good family friend, we were able to get an early appointment for Jenelle, rather than wait until the end of July. Dr. Phillips seems to be very good at what he does, is up front and honest about what we are going to be facing. He ordered an MRI, and requested it "stat" so that we shouldn't have to wait very long once we get authorization from our insurance. We are told that the process for the MRI will involve Jenelle being sedated, possibly intubated and may also require her to stay the night in the hospital for monitoring. Basically, she is going to be "put under" like anyone would be for surgery.

He gave us an initial diagnosis of Hypotonia, which means low muscle tone and function. He told us that visually speaking, the left side of her head appears to be smaller than the right, which would indicate that there may be something wrong with the left side of her brain. When he saw the shape of her head, he seemed concerned, without really having to look at her development delays. The left side of the brain does control motor function, as well as speech and cognitive ability, so that would make sense with her delays. He didn't say much more than Hypotonia, but when I mentioned Infant Stroke, he said that was another strong possibility.

So now, we wait for our insurance to approve the MRI request. Dr. Phillips told us not to be concerned initially when we have the MRI is the technician says something about what they see. Infant MRIs need to be read differently than an adult MRI, so what looks bad for an adult, may not necessarily be bad for an infant. We should not expect the report to be done for at least 2 days after the MRI. He was going to have the results read by a specialtist who is experienced in reading infant MRIs. Our next appointment with Dr. Phillips will be in 2 months, on July 22, 2003. This appointment is still earlier than the initial appointment we were given without using our connections. We are forever grateful for our good friend's assistance in that regard.

We met today with the Physical Therapist at ICEC (Intervention Center for Early Childhood) for Jenelle's initial development evaluation. They checked all of her areas of development and confirmed that she is behind in fine motor, gross motor, and cognitive areas of development. They showed us a couple of things to work with, but overall it was mostly evaluation. They recommended that we try to get a referral to a Pediatric Opthamologist to have her sight checked. She can see things like light, but does not respond to colors or other stimuli when held in front of her face.

We were told to expect to hear from Regional Center at the end of the week to discuss Jenelle's "Physical Therapy Plan", and which programs she will start, etc. Her first appointment with the Pediatric Neurologist will be this Friday.

We had our initial meeting and evaulation with our Case Worker for Regional Center. She was very frank and honest, and also encouraging at the same time.

Jenelle's biggest problem at this point is her inability to use the right side of her body. We never even realized it, but she even tilts her head to the left and not the right. She has little strength in her right arm and hand, and appears to have pain when we turn her head in that direction. The encouraging news is that it just could be caused by poor muscle tone. In her early months, she may have tried to turn to that side or do things with her right hand, but because it was too difficult, she gave up, hence why she doesn't use it much and favors her left side. Since our visit with the Pediatrician, both Brett and I have been working with her to get her to support herself on her legs. She is improving, which is also encouraging in that we can work on a problem area, and she shows improvement.

Although she doesn't follow a rattle, or turn to the sound of noise, the intake person did feel that she can see and hear. She noticed Jenelle's eyes follow my voice, but she has difficulty straining her head to see me (I was sitting on her right side) Again, the encouraging part of this is that because of low muscle tone, she just could be giving up on trying to grab things or turn to sounds simply because it is too difficult for her. That can be improved with muscle tone.

Overall, she definitely felt that we can get Jenelle into physical therapy for an initial evaulation as soon as May 13, 2001. She was also very frank with us and said Jenelle's symptoms appear to be similar to Cerebral Palsy. That of course is just her opinion, and there are lots of tests to take before we make that diagnosis, only a neurologist can tell for sure. So we have a long way to go. She also stressed that we should try to push to get the neurological evaluation quicker!

We are waiting for our Neurological authorization, and an appointment with the Neurologist.

More about Jenelle

Re-written on August 8, 2006:


Welcome. My name is Kelly, and I am the author of this blog. I am married to a wonderful husband and father named Brett and we have two children named Jack and Jenelle. This blog was created as a way to update family and friends about our youngest Jenelle, who has special needs. That sentence seems so simple and yet there is no easy or simple way to describe Jenelle. She has literally stumped most of the world’s leading experts in child neurology yet technically all of the things we’ve tested her for have come back “normal”.

Jenelle’s biggest challenge is controlling her seizures. On top of that, Jenelle has very low muscle tone (hypotonia), cortical visual impairment (she’s blind), metabolic acidosis of an unknown cause and she has a G-tube for failure to thrive. Developmentally she is at the level of a 6 month old; she started sitting up in March 2006, she does not use her hands to hold anything and does not talk. She will laugh, giggle and cry when she wants.

Jenelle was born at 37 weeks after a difficult pregnancy. She was 6 pounds 14 ounces with Apgars of 8 and 9. Pre-term labor started for me at 28 weeks caused by a kidney infection that I had at the time. I was given Terbutaline, and placed on full bed rest the last two weeks of my pregnancy. At birth, we had no reason to believe that anything was wrong with Jenelle. My gut started to tell me something was wrong around 6 weeks when I noticed she wouldn’t smile, and that she didn’t grab at toys. She could barely lift her head, or support her own weight at 12 weeks. By six months of age, we knew she was delayed, but hoped it was due to her pre-maturity.

She was diagnosed with Infantile Spasm (seizures) at 10 months of age, and that is when things really began. Many medications, hospitalizations, steroid injections, status seizures, immune system compromise, therapy and endless doctor’s visits and specialists would eventually follow. About 9 months after the Infantile Spasms diagnosis, Jenelle was diagnosed with Lennox Gastaut Syndrome, a severe and rare form of Epilepsy that leaves most of its victims with severe mental retardation, if they live past age five. Though that last part is scary to hear, I’ve since met many, many families with LGS who have children in their 20s, 30s and even 40s. And although we use words like Infantile Spasms and LGS, the underlying cause of Jenelle's problems is still unknown.

Jenelle finally gained significant seizure control sometime in late July 2005. After that, her development really began to improve. We aren’t sure what is working exactly but we’ll take it. Welcome again and please feel free to comment from time to time.

Meet our Jenelle...

Our daughter Jenelle suffers from a rare form of Epilepsy called Lennox Gastaut Syndrome (uncontrolled seizures), global development delays, cortical blindness, low muscle tone (hypotonia) and "failure to thrive" for which she has a G-Tube. This "blog" is a collection of email updates to family and friends about Jenelle, and also has some thoughts from me (Jenelle's Mom) on occasion. To start at the beginning, please click on the archive link at the right for May 2003 - that is where the story/updates really begin. To learn more a little more about Jenelle, click on the link "Background on Jenelle" also found at the right.

Here are some statistics about Epilepsy:

"Epilepsy and seizures affect 2.5 million Americans of all ages, at an estimated annual cost of $12.5 billion in direct and indirect costs. Approximately 181,000 new cases of seizures and epilepsy occur each year. Ten percent of the American population will experience a seizure in their lifetime. Three percent will develop epilepsy by age 75."

Please check out Jenelle's Epilepsy Awareness Bracelet! (click on charity bracelets and scroll down) Right now, there is no cure for Epilepsy, however the fight remains strong. We appreciate your prayers and support - Thank you for visiting and sharing this site!