Finalized the IEP!

Just a quick update to let everyone know Jenelle is doing well. We met with her new school on Monday to finalize her IEP because her 30 day introductory period was over. We got to meet her new PT, OT and Vision Therapist, all of which said she was "adorable". I'm hoping this is not "too much information", but we were surprised to hear that they were starting a "potty training" regimen with Jenelle, and that she was actually successful peeing on the potty 3 times! If you are like me, you may be wondering how they are doing this. Apparently they start with scheduled times to put Jenelle on the potty all throughout the day, and accordingly she has "pee'd" successfully three times (for the month!) Not sure if it is a fluke, but it is a start. I've always imagined that Jenelle would forever be in diapers, and the thought of potty training her never enter my mind. It is a slow process, but maybe in a few years, Jenelle will understand the need to go, and will be able to tell us when we need to put her on the toilet! What a wonderful idea - I'm glad they know what they are doing with her!

We are doing well with seizures, but Jenelle continues to have "stuffy" days which confirms my suspicion that she has some allergies. If it continues to be an issue, I think we may need to start her on an antihistamine. We'll just wait and see because I hate to put her on more drugs if we don't have to!

That is all to report. Seizure wise things are great (knock on wood!) Now we're just trying to avoid the flu and other sicknesses that are common this time of year! Thank you for the continued prayers - I'll keep you posted!

Thanksgiving Update!

It occurred to me yesterday during dinner that I forgot to send out an update before leaving work on Wednesday. I realized that without an update, some might worry that we were in the hospital again. No worries, this is another "no news is good news" update!

Jenelle is doing really well at school, and big brother Jack got to visit last Friday morning. He really liked her teacher and her room. He thought it was very "safe" and very colorful. His teacher said he was a smart little boy (and she's right!)

Jenelle is very close to sitting up, and in fact has mastered rolling to her side and resting on her elbows very well. I was surprised the other morning when I walked into her room to see her sitting on her side with her head in her hand. It was as if she were relaxing or something. She only holds this position for a few seconds, but gets better each day.

Monday afternoon is our 30 day IEP with her new school. I'm confident we will all agree on everything, and I'm anxious to meet her new Physical Therapist and Occupational Therapist. That is the only thing I miss with Jenelle taking the school bus now; I rarely get to interact with her therapists, so I sometimes feel out of the loop. She still seems stuffed up, and I worry that she inherited my allergies (just what this child needs, more drugs!) Other than that, at least she is staying healthy (knock on wood!)

Hope your Thanksgiving holiday was wonderful! We're still waiting to hear from UCLA about the visit to genetics. Thank you for your continued prayers and support - I'll keep you posted!

Below is a photo of Jenelle as she arrived for Thanksgiving... all tuckered out with Grandma and we had only been there for 1 minute!

High Court Rules against Parents in Special Education Case

A new blow to parents of special needs kids... and in my opinion, it comes from the very court we expect to protect our kids the most. Here is the article and editorial post from Postcards from Holland. Needless to say, this is a message to all parents that we need to fight, and not give up on wanting better things for our kids.

Tagged by Het!

I got tagged by Heather with this one. I can't believe how long ago this was! Please play if you have a blog and you want to!

Here goes:
1. Go into your archives.
2. Find your 25th post.
3. Post the fifth sentence (or closest to it).
4. Post the text of the sentence in your blog along with these instructions.
5. Tag five other people to do the same thing.

Here it is ... October 16, 2003: “He admitted her immediately because he was concerned with her being so sleepy.”

"Bad Mommy!"

I got a “Bad Mommy” award yesterday. Accidents happen to everyone I know, but I’m still pretty down about it. I left Jenelle in her wheelchair on the sidewalk while the bus was driving up so I could run into the house to get something. I forgot to lock the brakes, and she rolled off the curb and her wheelchair tipped over. She cried a lot. I cried a lot. She went to school and an hour later they called to tell me they thought I should pick her up because she hadn’t stopped crying. Fearing the worst like a broken arm or rib, I took her to the emergency, our favorite place in the world (NOT!)

After waiting over an hour for a room we finally got in and took her out of her chair. Immediately she stopped fretting and was rolling around on the bed like nothing happened. The doctor checked her out quickly, and we were on our way home. The quickest stay in the ER next to the time we were directly admitted to the hospital! After it happened as I was driving to work, I called Brett to tell him what happened, and he responded, “Honey, she has already forgiven you.” I guess he wasn't exactly correct because if she had forgive me so quickly, we wouldn't have made the trip to the ER. But once we got in, she was fine - just a bump on the head... not that her brain wasn't already broken anyway.

I know I’m a great mom. Accidents happen and I’m sure I’ll never forget to do it again. I’m sure she has forgiven me, but I still feel horrible. It is a constant reminder that she is so fragile, and life for us is not normal.

Jenelle held my hand!

Not much new to report. I forgot to mention that when we saw Dr. Shields last week, Jenelle was up to 27 pounds, 6 ounces! Great news!

Today, Jenelle seems to be getting sick as she seems congested and stuffed up. As she was falling asleep tonight, I decided to crawl into bed with Jenelle and stroke her hair. She seemed to enjoy it as she was quiet, but awake. All of a sudden, I held my hand in front of her face and said, "Hold my hand Jenelle!", and you know what?... She grabbed it! Well OK, she didn't really grab it, but she made a noticeable effort to put her hand into mine. She did it not once, but 5 or 6 times! I even called Brett into to watch - we're so proud!

Have a wonderful weekend!

Photos of Jenelle's new school adventures!

Just wanted to share some photos of Jenelle's first week at school. Here is Jenelle taking her first ever bus ride! Jenelle rides the lift in her wheelchair.

Jenelle gets a window seat!

Here is Jenelle on her first day of school. This is a photo of the two little girls who are putting toys on her chest.

Here is Jenelle during circle time where her teacher is putting an object in her hand and making Jenelle hold the object - hand over hand!

And of course, here are the kids after trick or treating! Can't you just see the love?

Have a great week!