Old Wounds, and Healing

Last Sunday, Jenelle's Challenger Team had their first practice. It was such an amazing and awesome experience. The kids are so fun, and so happy. It really helps you see things in life, from a different perspective. Unfortunately, the first practice opened some old wounds, and some old hurt resurfaced.

The entire team is quite a diverse group of disabilities. As a special needs parent, one never likes to dwell on "diagnosis" or "labels," especially when you are like us and your child is without diagnosis. As I predicted, Jenelle is the most challenged kid in the group. She doesn't talk, doesn't use her hands, and is barely aware of what is actually going on. Many of the other kids are very high functioning. Even the child in the other wheel chair was trying to field the ball with her glove.

During the first practice, I was talking with the parents and noticed that Jenelle hadn’t had a chance to bat. Brett was helping with the coaching, and Jenelle was sitting in her wheel chair off near second base with Jack. When practice was over, I asked another coach why Jenelle didn't bat. The coach told me that Brett didn't think she was ready. Later, Brett said it hurt to watch Jenelle, and to see that even amongst her peers (i.e. other children with disabilities) she is so very different, and so very disabled.

When she was a baby, it was difficult to see other kids her age, because it was a blatant reminder of all the things she wasn’t doing. With time, it becomes easier to see other 5 year olds and typically functioning kids. It is easier to accept that Jenelle is different. But I guess when you start to realize what other disabled kids can do that your child can't, it is like pouring salt on an old wound. Brett said, "Sometimes I wish it had been easier. Like maybe if she had Down Syndrome, she could at least be more high functioning." But then I reminded him, that at least without a diagnosis, at least she still has potential. And maybe next year, she'll be using a walker to get to first base instead of her wheelchair! It is hard to find the words to comfort him, because I am hurting as well.

Yesterday was Jenelle’s second practice. We held it indoors because of the rain, and instead of her regular shoes, I put on her AFOs to give her more support. As you know, Jenelle is just starting to walk, and is walking every day with such determination and wonder. We really need to keep an eye on her for her safety. Her improvement is amazing. At practice, Jenelle was able to stand at the tee, and put a hand on the bat and hit the ball. She took slow and determined steps and made it round the bases (with help.) And she smiled like she’s never smiled before. Jenelle took 3 “at bats” yesterday, and needed her wheel chair for the third as I could tell she was getting tired. She giggled and laughed and loved every minute.

Once we got over our hesitation and gave her have a chance, she made us very proud. I never realized how this experience would move me more than I’ve already been moved being Jenelle’s Mom, but it has. I find that I’m so proud of all these kids, as they really want to play baseball, and do their best. It is so wonderful to share that with these kids. Opening Day is this Saturday, and I can’t wait to share this experience with our community. With my parents who are driving down 4 hours to see her first game. You can’t help but watch and be moved. And in a way, this experience heals the old wounds, and helps inspire us for Jenelle's tomorrow.

Neurtransmitter Disease Test Results

We met this morning with Dr. Chang, Jenelle's metabolic doctor from CHOC, to get the results from her spinal tap for Neurotransmitter Disease. As predicted, Jenelle does not have Neurotransmitter Disease. As you can imagine, we are slightly disappointed. All of the test results were normal. Dr. Chang joked that he hoped we weren't mad, and Brett responded in kind saying we might have been more angry if the test had actually been positive as we're so used to not knowing the answer. So, we have ruled out another possibility, and that helps us move forward. Our next step is that Dr. Chang would like to order an MRI/MRS of Jenelle's brain, brain stem and spine. He would also prefer the MRI/MRS be done at UCLA, so now we start the process of getting that approved by insurance. We meet with Dr. Shields next month, so that will be on our list of things to discuss. The scan would need to be done with sedation, so we'd be looking at another outpatient/short stay procedure, and most likely, later this spring.

More big news in the milestone department... Jenelle is walking! She is very wobbly at times, but she is walking! At daycare she can move from couch to couch, and room to room by taking steps. She can stand in the middle of the room without any support and stand from a sitting position without holding onto anything! She can walk barefoot, or with her AFOS - sometimes a little better with the AFOs. I am going to talk to her school about getting a walker. Monday night, Jenelle walked across the room to me for the first time. It was so surreal. She was leaning on the couch, and I was at the table going through mail, when all of a sudden she walked to me making it just two steps shy of all the way! I just can't describe it well - it was simply amazing. I showered her with kisses and hugs for at least 5 minutes and she seemed very proud of herself.

When we told Dr. Chang about her walking, he was very excited. One thing to remember in all this testing is that Jenelle continues to improve, meet new milestones, and has not plateaued or regressed in any way. This is encouraging. A while ago, Dr. Shields suggested that it was very possible that all of Jenelle's problems stem toward something that happened during my pregnancy. She may have lost oxygen or something didn't develop correctly, etc. It is possible that she may only have brain damage, and no other diagnosis beyond that. This is why we are moving toward a new MRI. Her last MRI was in 2004, and as she has gotten older and her brain has grown larger, damage may finally show up on an MRI. Dr. Chang also believes that we may be to the point where we can also rule out a metabolic diagnosis. If the MRI is normal, he said we may once again be looking at mitochondrial disease. Mitochondrial disease is tested with a muscle biopsy, and we are not convinced we need to put Jenelle through such an evasive procedure. Especially when the outcome would not lead to something that is treatable nor could it improve her quality of life.

So for now, things are fantastic as Jenelle keeps improving. I think our next best test will be the MRI. In the mean time, we love watching her explore her world as she learns to walk.

Thank you for your continued thoughts and prayers... and your praise! We love sharing our amazing daughter with you! That is all for now, I'll keep you posted!

Video of Jenelle taking steps!

The Kids are ready for Little League!

And maybe this time next year, Jenelle will run to 1st base! Finally, this is all I could catch on video of Jenelle taking steps. She was hanging a bit onto the couch. I caught this right before bedtime, so I guess she was a little tired. She's so shy, and yet, such a ham!

Just some photos

Not much new to report as our appointment with Dr. Chang is next week. Jenelle is really trying to walk. Today we had a report from daycare that she walked across the room from one couch to the other (very wobbly of course!) Last week she stood up in the middle of the room without holding onto anything! She's such a dare devil! Unfortunately, when I break out the camera to get video, she reverts to crawling. She definitely knows the camera and always wants to inspect it! It's been amazing to watch her do so well. Here are some photos to enjoy!

Here is Jenelle standing straight and tall while watching Daddy on the computer.

Jenelle is so tall, she can reach the phone! Good thing she hasn't mastered dialing yet!

Hope you are having a great week!

Remembering the words of Dr. King... and taking it a bit further...

Today is Dr. Martin Luther King, Jr. day in the United States. Just a few minutes ago, I sat with Jack in front of my laptop, and watched Dr. King's "I have a Dream" speech at the Lincoln Memorial (I will link to it from You Tube below.) It is exciting to me to think that my son cannot fathom the idea of racism and prejudice. I like to hope he will take that idea of equality a bit further in regards to his sister.

Sadly, in comparison to Dr. King's dream, I think there is a "group" of individuals in the world that are just beginning their fight for equal rights in our society. These individuals are not separated by color, sex, age or economic status. I'd like to see Dr. King's "Dream" full filled in this way...

"I say to you today, my friends, so even though we face the difficulties of today and tomorrow, I still have a dream. It is a dream deeply rooted in the American dream.

I have a dream that one day this nation will rise up and
live out the true meaning of its creed: "We hold these truths to be
self-evident: that all men are created equal."

I have a dream that one day on the red hills of Georgia [people living with disabilities and people without disabilities] will be able to sit down together at the table of brotherhood...

I have a dream that [children with special needs] will one day live in a nation where they will not be judged by [their disability] but by the content of their character.

I have a dream today. "

Big First Steps!

Just a quick update to report some very big news... Jenelle took 4 steps all by herself (without holding onto anything) towards Grandma on Saturday night. We tried to get her to do it again, and she took two more steps all by herself. She seemed to be very proud of herself and wiggled and giggled once she reached her destination. I don't know if I'm ecstatic with pride, or scared to death! I think the latter.

Jenelle had a small fever last Thursday night, and and we saw an increase in seizures. So far, she hasn't shown signs of sickness, and after being lethargic that day is back to her normal self. She's a very busy girl!

Our next appointment with Dr. Chang (the metabolic doctor) is February 14. We will definitely have her test results at that time. Thank you for the continued prayers. I'll keep you posted!

Our New Little Leaguer!

Remember last May me telling you about my quest to get a Challenger Division started with our local Little League? Guess who was the first to sign up this morning! Yep, Miss Jenelle!

Opening Day is March 1 and the first Challenger Game is scheduled as the "opening game" for the season. I'm sure I will have some adorable photos to share!

Also, please check out the moving message from the Tustin Eastern Little League regarding its new Challenger Program. Click on their website and then click on T.E.L.L. Challenger Presentation to watch the PowerPoint. It moved me to tears!

Play Ball!