Thursday, October 27, 2005

Extra treats for Jenelle on Halloween!

Just a small update - It looks like Jenelle is going to start school on Monday, which is also Halloween. We had some delay in getting all the paperwork signed by her doctors, but now everything is in order and they are excited for her to start. Bus Transportation however will be delayed a little longer. I was told to anticipate this, so I'm not too worried. I wanted to pick up and drop off on her first day anyway, and I promise I'll take some photos to share. We also have an appointment at UCLA next Thursday, so extra treats all around! It looks to be a routine visit, but it will be nice to get some feedback on her new seizures.

Thanks for the support and prayers! I'll keep you posted!

Ghosts of Halloween past and present

Just a small preview of Halloween. The "old" photo is me and "Nana" (back in the day) at my first Halloween. Jenelle will be wearing the same costume this year, though I'm going to try to make it look more like Raggedy Ann than Bo Peep.

Monday, October 24, 2005

Just one more...

A photo taken by Aunt Nicki of Jenelle's smile as Grandma looks on.

Saturday, October 22, 2005

Photos from Jenelle's Party!

The Birthday Princess is Three!

Big Brother Jack loves to help open Jenelle's presents!

Mommy, Daddy & Boo!

Jenelle enjoys her gifts!

Nana loves Jenelle!

Singing "Happy Birthday" to Jenelle! (Click on the thumbnail to play the video!)

Happy 3rd Birthday Boo!

We have a three year old in the house! This past year has been amazing, even with all the hospital stays and trips to the ER. I am really very excited for the months that lie ahead for our little girl. Jenelle's last day at the Blind Children's Learning Center was Wednesday, and they celebrated her birthday with some "birthday Jell-O" I prepared. We were sad to say goodbye to her teachers and therapists, and I know they will miss Jenelle very much. Starting sometime next week, Jenelle will be going to school five days a week (30 hours a week) and will be riding the bus. Who knew that she would start school before Jack! I spent a lot of time on the phone with the school nurse yesterday completing necessary paperwork and such and I'm so excited about her placement and truly feel it is the best place for her to be.

We've definitely had our scary moments this year with Meningitis, status seizures, infections and ultimately a G-Tube placement. We also made an effort to try the Ketogenic Diet, which seemed very promising but had to be stopped because her Jenelle's Meningitis. We added two new "diagnosis" to the bunch; Metabolic Acidosis and Failure to Thrive. And we have been given opportunity to see what life is like without daily seizures - even if for only two months. During everything that has happened this year, the biggest "gift" of all was not only finding appropriate seizure control, but that Jenelle finally found her laugh and smile. I had no idea that was so important, but I see the positive effect her laugh and smile have on us all. Children and friends who often overlook Jenelle knowing she was different, now stop to enjoy her laugh and smile. It has even helped the relationship between Jack and his sister - his favorite thing to do now is to make her laugh. Amazing.

Today we will celebrate Jenelle's birthday with a small party. She is feeling much better after her infection earlier this week - the antibiotic seems be working. This morning I sat her in my lap and she held her head still while I put her hair in pony tails. She used to never sit still for me like that. I whispered in her ear that she was my beautiful three year old and she smiled.

And not to leave big brother Jack out of this, I officially signed him up for Little League today! In case you didn't know, Little League is a big thing for the Curran Family. Grandpa Curran is the District Administrator for District 30, Grandma Curran volunteers a lot and of course, there is a baseball field named after the family in Northeast Santa Ana. Unfortunately, Grandpa can't bend the rules about the boundaries for Jack, so he won't be playing at Curran Field - unless someday he makes All Stars! He is currently enjoying swim lessons and piano lessons and will start Kindergarten next September.

Thank you all for the continued prayers and support. I will keep you posted!

Thursday, October 20, 2005

Last day at school and an early birthday celebration!

Wednesday was Jenelle's last day at the Blind Children's Learning Center. Next week she will start at public school in the County Special Education program. I found this really great site that allows you to upload videos, so here is a clip of the birthday celebration (please forgive my singing) including Grandma holding the "birthday jello"... enjoy!

And since I found this video hosting site (please check it out at I decided to show you one of Jenelle's new seizures. This is pretty mild compared to others she has had in the past. Look at her right hand that is twitching as she sleeps. The feet you see are Jack and cousin Trevor... we were trying to get them to move away and give her some room.

And I took this photo at school this morning. This is one of those photos I wish I knew exactly what Jenelle was thinking ... maybe she is saying "Mom, you're nuts!" Isn't she Beautiful?

Wednesday, October 19, 2005

Anniversaries v. Milestones

I suppose it is that time of year again. When I begin remember where I was and what Jenelle was doing last year, two years ago… three years ago. Two years ago today, we were in the hospital while Jenelle was in “status” - hoping she would make it home in time for her first birthday. Oh yes, Birthdays… those are really tough too. You realize your child is getting older, and yet it becomes so blatantly apparent that your child is so very far behind.

I’m not sure which is easier these days; anniversaries or milestones. The last milestone Jenelle actually met was laughing out loud. Most children do this at what… age 6 months? Jenelle was 2 and a half. Thank God for that though because I was about to lose my mind wondering if this child felt any emotions at all. It was probably the biggest highlight of the year (still holding out to see if she’ll start sitting up on her own before the end of the year.) The list of anniversaries for Jenelle gets bigger each year; her first MRI, her first EEG, the day of that phone call from the doctor that changed our lives forever and of course birthdays. I’ve learned to appreciate each anniversary as a reminder of where we’ve been, and of all the potential for where we can still go.

On one of my on-line support groups today, a Mother was remembering a horrible experience a year ago when her child seized uncontrollably for almost 2 hours. They were at an airport and had to be taken by ambulance to the nearest hospital… none of the usual methods to stop her seizures were working, and she feared her child was dying. Because we’ve known each other online for over two years, I too remember that scary day and how I cried and prayed for her daughter. I remember fearing that child would regress from the pro-longed seizures, but as it turns out she has accomplished more in this past year than most expected. Hindsight is a blessing, especially when you can appreciate your fear a year later, and know that the child is fine and doing better.

I supposed I prefer the milestones to the anniversaries. After all we’ve been through with Jenelle; we certainly do have more appreciation for those small milestones that she passes all too infrequently. Once Jenelle finally masters something she should have been doing at age 6 months, it feels like progress, and as if she may exceed our expectations now. Anniversaries are bitter sweet, and like milestones they come in and out of our lives unexpectedly and with great significance. I don’t acknowledge each anniversary out loud, but they are in my mind as the calendar dates fly by each day. A “big one” is coming in just a few days… Jenelle will be three on Saturday. Instead of tears of grief for the three year old child she is not, I have a tremendous amount of pride for the accomplishments she has achieved this year. It gives me hope for the coming days and for her potential in the future.

Monday, October 17, 2005

More seizures as the Angels lose!

As if the Angel's game weren't depressing enough, Jenelle started having lots of seizures last night sometime during the game. These were her "new" seizures in which she flutters her eyes as if downloading information in her brain. At first, my Mother in Law who was watching the game at our house kept commenting on how "tired" Jenelle was acting, then I noticed a patten and realized they were seizures. Normally, this was not a big deal because they were brief; however, at one point Jenelle finally fell asleep on the floor, and about a minute later Brett noticed her hand twitching. I was able to get a video clip of it and then called UCLA to find out what we needed to do. The hand twitching went on well over a minute - almost two. Unlike a long, big continual seizure it seemed she was beginning to cluster a lot so I was concerned. UCLA instructed me to attempt to wake her and if she didn't respond, then to give her Diastat. She woke up without a problem, but still felt to me as if she had some involuntary jerking going on. I called UCLA back and they suggested giving her 1/2 the Diastat dose to see if things stopped. I did, and she settled down a bit, but still had some strange movements. I took some more video clips and emailed Dr. Shields again. After the game as I decided to put her down for the night, I thought she felt hot, so I took her temperature to find out she was running 102. At least with that we have an explanation for the seizures.

Jenelle went to see Dr. Patel this morning (with a fever of 101.4) and she put her on an antibiotic and requested labs. At this point, we are suspecting a urinary tract infection. We went to visit our favorite phlebotomist and it was nice to hear that she thought Jenelle looked much more alert than before (considering Jenelle was actually cranky and very lethargic today.) I always amazes me how people notice the differences in Jenelle when they haven't seen her for a while. She is much improved overall. One poke got the blood we needed, but unfortunately we're still waiting for some urine (that darn bag system!) I may have to drop that off tomorrow morning if we get some! We waited a while, and I fed Jenelle but no luck.
After my appointment with Dr. Patel, UCLA called about the video clips. The hand twitching was definitely a seizure, and is (like we've been saying) new for Jenelle. I believe it is called a "complex partial", and it appears it is coming from one side of the brain (because only one side of Jenelle's body twitches.) Our next appointment with Dr. Shields is in 2 weeks on November 4. Since we know the fever increased her seizures last night, I doubt he'll need to see us before then.

This is Jenelle's last week at her school, and I feel so horrible that she missed a day! Her teachers are already sorry to have such limited time with her. The school will be celebrating her birthday on Wednesday along with a goodbye party! So sad, but yet so happy she is moving on. Jenelle will be three this Saturday, and we are celebrating with a small family party at home. Hopefully she will be well by then.

Please keep us in your prayers, and I'll update as soon as I hear more. Thanks!

Tuesday, October 11, 2005

Please send "get well" thoughts to a little girl named Maggie!

In the blog universe, I came across a post about a beaufitul little girl named Maggie. Maggie is currently in the hospital at St. Jude's in St. Louis and suffers from a brain tumor causing her seizures. She may be having more brain surgery tomorrow. Please check out this link and feel free to send Maggie some well wishes. I know how hard it is to be a parent in this role, so it is a wonderful feeling to give some of the love back to another family in need.

Monday, October 10, 2005

No news is good news!

Things have been going well with Jenelle these past few weeks, and I've been so busy I haven't had a chance to update which once again goes to show you - "no news is good news!"

On Friday I met with the School District again and we finalized Jenelle's IEP. The whole experience was not pleasant and I now understand why so many parents dread the IEP process. I will not go into too much detail with such a "public" forum but I think we have advocated well for Jenelle (Thanks mainly to my sister and our advocate Janna Moore at the Epilepsy Alliance!) Most of our "issues" were regarding how the actual IEP document was written, and really not in regards to placement or other services. At the meeting on Friday I brought with me three pages of typewritten "changes and corrections" and the District agreed to all but one of my suggested changes. In order to "get the ball rolling" to get the paperwork in place for Jenelle to begin at her new school on October 24, I signed the IEP. We've agreed to meet 30 days after she begins school to address other issues and revise goals if necessary.

In order for Jenelle to begin school on time, she has to have a physical before the 24th! Luckily, our doctor was able to take her in this morning as they are booked through the end of the month, and her 3 year checkup was scheduled for after the 24th. Jenelle is doing great weighing in at 26 pounds 4 ounces (a gain of 4 ounces since our last weigh in) and is 36 inches tall. We had been postponing "live" immunizations for Jenelle in the past because they are known to make neurological problems worse. However, after talking to Dr. Shields last week we both agreed that since Jenelle was going into county program and public school it is best that she get her MMR (Measles, Mumps & Rubella) and Chicken Pox vaccines now. Obviously we know where Jenelle is Neurologically, and her getting those diseases would be ultimately worse than any increased seizures she may experience. So Jenelle got her MMR and Hepatitis Booster this morning as well. Poor baby girl did not like the MMR - she cried when usually she doesn't.

That is all for now! Also to keep you posted, Jenelle's friend Sierra is doing well since her VNS surgery. Her Mom reports noticing that she has been able to stop seizures with the VNS before they get bigger - which is great news! Jenelle's friend Eli is also recovering well from his brain surgery over two weeks ago. Last update from his Dad is that he has had no seizures since the surgery! Great news for both, thanks for the extra prayers and for keeping us in your prayers as well! I'll keep you posted!

Thursday, October 06, 2005

Postcards from Holland

Today I joined Postcards from Holland which is a community blog of parents with special needs children. I've found that Jenelle's Journey has been very therputic for me to keep up to date, and realized in finding Postcards from Holland that Brett and I are not alone. Please feel free to come meet these amazing families and read their stories. In some ways we are so lucky, and in other ways, others feel they are lucky after reading about Jenelle. Regardless, there are many others who are just as strong as me, and are just getting used to this place called "Holland."

Please feel free to read Jenelle's introduction here.

And, if you've never read "Welcome to Holland" by Emily Perl Kingsley, feel free to learn more about it here.