Monday, August 29, 2005

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!

Sunday, August 28, 2005

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!

Saturday, August 27, 2005

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!

Tuesday, August 23, 2005

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!

Thursday, August 18, 2005

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!

Wednesday, August 17, 2005

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.

Tuesday, August 16, 2005

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!

Sunday, August 14, 2005

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.

Friday, August 12, 2005

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!

Tuesday, August 09, 2005

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! ;)

Monday, August 08, 2005

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!

Wednesday, August 03, 2005

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?