Thursday, August 12, 2004

Jenelle met a new milestone! She has learned to wave "bye bye!" I am so thrilled! It is very subtle, but she will move her closed fingers up and down while sucking her thumb as she hears the word "bye", or will put her hand up as if to "wave" when she hears the word (if she isn't sucking her thumb!) I thought I noticed it last week, but then thought it was a fluke. On Sunday, a friend was visiting, and went over to Jenelle as she was leaving and said, "Bye Jenelle" and Jenelle waved in response! Our friend said, "Oh she waved - isn't that cute!" It was so cool!

Jenelle is doing well on the new medicine. She has been much more active and alert and it is great to see her this way again! I haven't seen a seizure since Saturday - not sure if Daycare has seen any. The only down-side to the Lamictal is that we are back to battling insomnia again! Jenelle has become the "party queen of the night" and has been staying up until 1:00 AM since last Friday, lying in her crib, making noises -her own private party! Yawn! According to some parents I've talked to, this type of reaction is common in Lamictal. Some say it went away after a few weeks, others said their kid slept very little the entire time! Oh joy! So far, we haven't seen the dreaded rash either - this is good news as well. So, I'll just keep "Knocking on wood" - its great to see and report good news for a change!

Oh yes - I forgot to add this very important piece of good news. Last Friday, we got a letter from UCLA - our next appointment with Dr. Shields is February 7, 2005! I'm not sure if they just scheduled us automatically, or if another follow up appointment was approved by the HMO, but we're keeping that appointment! I've said it before, my gut instinct is that sometime in the Fall, Jenelle's name will probably "come up" on UCLA's Ketogenic Diet program waiting list, so I imagine we'll be seeing them sooner than February 2005 (sounds so far away doesn't it?) Many prayers answered because of the many prayers from our wonderful family and friends! Keep those positive thoughts and prayers coming!

Monday, August 09, 2004

Where were you?

See how far we've come...
This poem was written by another parent who is a memeber of my online support group for special needs kids. I emphasize that I did not write this...

Where were you the day you got the news that changed your life forever? Where were you that fatefull day the world fell apart at your feet?

Where were you when the shattered fragments of your hopes and dreams came raining down?

Did you sink to your knees as reallity slammed into you? Did tears stream down your face ?

Did your heart break in two? Did you cry out in anquish or scream in rage?

Did you keep it quietly inside? and how did you live with the horrible ache?

How did you face another day? Do you rember that day as if it were yesterday ?

Is every detail etched into your mind?

Where were you the day your world collapsed? Did you know it would never be the same again?

Where were you the day your world caved in like mine did today ?

Many of the members responded by posting their own experience of "that day." Here is my reply:

Its been almost a year since we learned our sweet girl was having seizures. Looking back, it hasn't been just "one day" when we realized our world was forever changed. But, I think that is the way it goes when you have nothing but "normal" test results, and an "abnormal" child.

25 weeks pregnant - I was driving to work, and realized I was having painful contractions about a minute apart. Not sure why I didn't pull over and call 911, but I managed to make it home and have my neighbor drive me to emergency. Turns out, I had a kidney infection and kidney stones - the pain was causing contractions. They did an ultra sound to make sure the baby was fine - and she was! In the back of my mind I wondered - and to this day, I still remember that day and wonder...

Jenelle at 5 days old (October 27, 2002) - I was sitting on the couch watching the Anaheim Angels in the Game 7 of the World Series in the 9th inning. Our team wins and the room burst into happy screams and cheers. I looked over at Jenelle in her bouncey seat, and she didn't even wake and does not seem bothered by the noise. A feeling in my gut tells me this isn't right.

Jenelle at 10 weeks old - Her first day in day care as I went back to work. The day care provider pointed out just as I was leaving that "Jenelle doesn't smile much does she?" I brushed it off because our doctor said she would be delayed because of her prematurity, but my stomach lurched wondering “what if she doesn’t see?”

Jenelle at 6 months old – Our pediatrician finally agrees that she is not where she should be developmentally. We get the referral to the Neurologist. 3 weeks later, we are sitting in the Neurologist waiting room, watching the other children and their parents, seeing their wheelchairs, their behavior, their cries and moans … we wondered if this is what we had to expect, or if we should be thankful for what we have?

September 8, 2003 – After just sending out a positive email to family and friends about Jenelle’s first EEG, I get a call from the Neuro. Quick responses don’t always mean good news. Her EEG is very abnormal and he wants me to look up “Infantile Spasms” on the internet. He wants to see us immediately the next morning to discuss and begin treatment. He mentions hospitalizations, daily injections, something called ACTH, and that this was “not good news” at all. I was so naïve… I think “Epilepsy is good – at least we have a name, a diagnosis! There is medication for Epilepsy!” Then I search the internet and what I find is grim. I see things like “severe mental retardation”, “very difficult to control” and “short life expectancy.” I still cry just thinking about it. I mean honestly, how many times does a doctor tell you to search something on the internet so you know what to expect, rather than tell you what he knows?

September 11, 2003 (yes the second anniversary of 9/11) – Jenelle’s first hospital stay for her 24 hour EEG to confirm the Infantile Spasms diagnosis. I’m still naïve and fairly hopeful that this news isn’t so bad. I am calling UCLA to try frantically to get in for a second opinion.

October 15, 2003 – “Sleeping all the time is not a good thing, why don’t you bring her into emergency”… Jenelle’s first status seizure ending 6 days later in the hospital.

March 18, 2004 – UCLA mentions the possibility of surgery – removing half her brain! At this point I already knew the surgery existed. The first time I learned of it, I wanted to throw up - I couldn't fathom the idea of making a decision to remove half my child's brain. This time, instead of wanting to throw up at the thought, I’m actually hopeful and optimistic and realize this may be the only way to give her a chance at a normal life!

April 28, 2004 – At 3:30 in the morning, Jenelle has a 7 ½ minute grand mal (her longest ever) while in my arms while hooked up to the EEG at UCLA. Her lips turn blue. The next morning we are told she is not a surgery candidate, and that she has Lennox Gastaut Syndrome – even worse than Infantile Spasms.

May 7, 2004 – Her “special” school informs me that the Lennox Gastaut diagnosis makes her “too unstable” to be "in center" at the school. Effective immediately, they send her home with instructions to have a nurse sit with her. In my mind I know Jenelle is no different than any other day, but this is the first day my child is discriminated against because of her disability – and she is only 18 months old.

I’m sure as time goes by, I can add more dates. These are the ones that stand out in my mind’s eye today. The days I was stunned, scared as hell, emotional, in denial, angry and knew that my life would forever be different because of my beautiful little girl, who's disability and seizures are still a mystery.

Tuesday, August 03, 2004

As we begin the month of August, we celebrate the continued stability in Jenelle's seizures and 3 months since our last hospital stay (or 5 months since our last hospital stay for emergency reasons as opposed to just taking tests!) Thank you all for the continued positive thoughts and prayers. The calm summer has been a much needed blessing for our family.

We took Jenelle to see Dr. Shields at UCLA last Monday for another follow up. We informed him that the status of her myoclonic seizures remain the same, i.e. fewer seizures with shorter in duration. Unfortunately, since starting the Klonopin wean on July 19, Jenelle has had 6 grand mals (that we've seen.) The good news about the grand mals is that they too are much shorter in duration - the longest being only a minute in length. Dr. Shields felt the return of the grand mals was primarily from the Klonopin wean and nothing else - good news!

So, Dr. Shields's plan of action is to do "one thing at a time" …thus we were instructed us to start Lamictal, another anti-seizure medication. Accordingly, it will take 6 weeks to see the "therapeutic" level and results of this drug, so unless we come across a side effect that causes us to stop Lamictal, we won't make any other changes to her medications for at least 6 weeks. While I asked about the possibility of starting the Ketogenic Diet and/or getting the VNS implant as an alternative, Dr. Shields responded that we should try at least 3 more drugs after Lamictal before the diet and/or VNS. His reasoning is that with the diet, it can take up to 3 or 6 months to fine tune everything to ultimately see results, and with VNS is can take a year or more for results. Assuming each drug takes 6 weeks to see therapeutic results, we can go through the "drug trial" much quicker. After we see the results from Lamictal, Dr. Shields said he'd like to wean Jenelle off of the Vigabatrin as most likely it has worked on her infantile spasms and they have subsided because of her age. After Lamictal, the other drugs we will try are Keppra, Depakote and Zonegram. So, assuming we can keep the seizure stability we can expect this process of weaning a drug, then starting a new drug for a few more months. The ultimate goal is to find a drug that gives us the least amount of seizures possible with the least amount of side effects. Hopefully, we can find and keep a ZERO amount of seizures with something!

According to our HMO insurance, this was our last authorized visit to UCLA. We are going to try to put in a request for additional appointments to see if we can "stay the course" with Dr. Shields and his team. In my opinion, I don't know why our insurance wouldn't approve additional appointments - since seeing Dr. Shields, Jenelle has stayed out of the hospital (not including her April stay for tests) which in itself has saved our insurance thousands of dollars (literally!) Saving money talks - lets hope they listen and authorize some more appointments for us!

Jenelle's new stander was delivered on Monday. I met with one of her Physical Therapists on Tuesday to "try it out" and Jenelle did really well using her trunk muscles for sitting, and her leg muscles to support her standing. We are supposed to try to use it at least 3 times a day for as long as she can take it. Her regular physical therapist has been on vacation, so when she returns on August 17, we will hopefully get to order the orthopedic supports to go with the stander. Since going off Klonopin, Jenelle has been much more alert and active. We are seeing smiles again, and she is doing well to "look" at things and support herself when being held. Her wheelchair and bath seat have been approved by her insurance and we are just waiting for the order to come in.

Big Brother Jack is doing really well, and is finally potty trained with an occasional accident here and there when he doesn't get to the potty in time. He is so proud of himself and loves to tell everyone all about it! So, that is all for now. Thank you all for the continued prayers and support - we greatly appreciate it. I'll update again when I can!