Thursday, September 11, 2008

Routine update from trip to UCLA

As mentioned below, earlier this week we passed the 5 year "anniversary" of the day we got the news that Jenelle had epilepsy. I wish I could have told myself back then, that today we would be seizure free, as that might have made the journey a little easier. Today Jenelle had a follow up visit with Dr. Shields at UCLA, and when they asked the date of her last seizure, I really had to think long and hard about it. Jenelle's seizure control has been exceptional, and the last time I saw her have one was maybe a month or more ago. (And I'm knocking on wood as I type that, so you should knock on wood as you read it!)

After celebrating Jenelle's new achievements, and talking UCLA football with Brett, Dr. Shields discussed some of the new behavior issues we are seeing in Jenelle. Specifically, pulling out her hair, the biting, the crying and some small signs of possible early onset of puberty. The behavior stuff is easy to fix, and we are increasing her Risperdol to match her weight increase (Jenelle is now a whooping 48 pounds!) Jenelle ran out of Risperdol a few days ago, so I didn't re-fill it as I was waiting for this appointment. I honestly didn't think it was helping until last night I found a note in her backpack from her teacher asking if we had changed any medicines. Her teacher noted that she did not see the "self control" she had seen previously in Jenelle. That advice is enough for me to agree to give it a longer try.

As for the puberty issue, we have been told that children on seizure meds can often have an early onset, anywhere between age 6 to age 9. Jenelle will be 6 in October, so Dr. Shields thinks a referral to an endocrinologist is a good idea. We aren't anywhere near discussing something like "The Ashley Treatment" (where you can surgically remove female organs to avoid puberty), and Dr. Shields said there are some advantages to consider with early onset. He told us that research has shown for every year you avoid puberty, you guarantee at least 2 inches of growth in height. So if Jenelle were to enter puberty early, it might help keep her small. Again, we are no where near making any decisions about that, but we agree it would be best to start watching it closely now.

Everything else is going great and we will go back to see Dr. Shields in March of next year. Last week, Jenelle started school in the same class as last year with the same teacher. She seems to be happier back on her normal schedule. As for an update on the molars, one has finally cut through and another is giving us some problems. Now that we know what to look for, we've been helping her chew to get them to cut easier. So far, she seems to be taking it all in stride.

Five years ago, we had no idea what the road ahead would be for our Jenelle. The same is true today, but with the love, support, prayers and positive thoughts from all of you we know we will make it through. Thank you so much for everything.

As always, I'll keep you posted.

Tuesday, September 09, 2008

5 years ago today...

Five years ago today, we received a phone call with news that changed our lives forever. Jenelle's neurologist called with results from her EEG indicating she had Infantile Spasms.

They say that time heals all wounds, and in some instances that has been true for us. Each year, this anniversary gets easier to pass for me, but this year is a little more difficult as I have been watching another child start a similar journey. I know the difficult road they have ahead and am thankful to have that part of the journey behind us.

When we got the news about Jenelle, I was relieved and a bit devastated. I was relieved that we finally had a name for what was going on, but devastated at what I read about her condition. Every parent hopes the best for their child and that is all we ever wanted for Jenelle. Part of me wishes I could go back in time to tell myself 5 years ago that it would be a difficult journey, but it would be OK. Jenelle is not perfect, and she is not seizure free, but she is healthy and she is OK. I realize now, once we controlled the seizures, Jenelle made more progress. I don't think we could have done anything differently, except maybe get her to be followed by the best expert in the country sooner than we did.

I watch videos of that first 24 hour EEG and can see so clearly now the seizures I missed all that time. I'll be honest in admitting that even with the EEG confirmation that Jenelle was having seizures, it took many months for me to begin to actually recognize what they looked like in person. I consider them subtle, silent thieves of my daughter's most precious moments during her development. To think of seizures being anything less than monstrous is an understatement.

Even with the good times we are enjoying now with her seizure control, it scares me to know that at any moment, without any warning, those seizures can rear their ugly head and take more away from our Jenelle. That fear does not stop me from enjoying the present, but it does help me remember to stay grounded and realistic.

If I had known 5 years ago what I know today, would the journey have been any easier? Probably not. But from our experience, I appreciate the hard times and rejoice in all that we've accomplished. Jenelle has more to prove to us all, and I am so proud for all she has taught me.

Thursday, September 04, 2008

"Sometimes even the greatest joys bring challenge.

And children with special needs inspire a special love.

To the families of special-needs children all across this country, I
have a message: For years, you sought to make America a more welcoming place for your sons and daughters.

I pledge to you that if we are elected, you will have a friend and
advocate in the White House."

~ Sarah Palin

Regardless of how to plan to vote, I just need to say, that as a special needs parent I can't help but get choked up when I hear that. Way to go!