School pictures are here!

My little girl looks so grown up! Sniff. I really look forward to school pictures every year. It's the one time when I'm sure to have a photo of Alli where she is actually looking at the camera. I also have another adorable picture of her in her cap and gown (for pre-K graduation). I would love to share that one but it is a class composite and I don't think it's fair for me to show the other kids.

(I have been a terrible blogger but I will definitely update soon. I have lots of Allison related news to share!)

Just a few pictures I wanted to share..

This is Allison in her shower cap. It's the cutest thing ever. I started making her wear it so I didn't have to wash her hair every night. She gets so excited in the tub that her splashes make a big mess!

Alli got a new booster seat a few weeks ago. This one is rated up to 50 lbs with the chest harness which makes me happy. I wasn't ready to let her go to just a seat belt. She is way to wiggly!

Today was picture day at school. She wore her hair in pig tails and a pretty flowered shirt I bought her with her Christmas gift cards. They do such a good job with her every year that her pictures turn out great. Here is last year's...

I am really hopeful that this year's turns out as good! I have to wait until the middle of March for them to be delivered, and since I spent $50 on them I'm hoping that they are worth it!

Proud mama

It's not often I have something to be really proud of when it comes to Allison's school performance. She doesn't really participate in many of the activities but we have always thought that her just being in the school environment is good for her. She might not speak, but I'm sure that she listens. Last night I got this email from her teacher. I thought it was cute and it really made me smile.

"I just wanted to share a cute story about Ally from today. After rest time we were at circle time discussing birds. Ally was doing her usual wandering around the classroom coming in and out of circle time and listening from afar. We were watching a short video clip and it had information on bald eagles nests and it talked about how over time, they are so heavy they collapse. I gave the definition of "collapse" to the kids since it's a new word for them and then I gave a demonstration and pretended to collapse. All the kids wanted to try and took turns "collapsing". After all the kids had a turn I yelled for Ally to come over (she was on the other side of the room). I said "Ally come over and show us how you collapse". She turned around, walked over to circle time and collapsed!!! I really think she knew exactly what she was doing because that's not something she usually just does. When she comes to circle time she either sits down or goes down on her knees. It was the cutest thing ever and I wish I got that one on video tape. I know sometimes her therapist wants to make sure that she is always sitting with us, even though she doesn't like it, but it makes me feel really good to know that she is still getting all the information from wherever she is in the classroom:)"

It's silly, but..

I get jealous when J plays with other children. Jealous of what, I'm not sure exactly. I think I'm jealous for Allison.

Tonight the neighbors came over and had dinner with us. It was a crazy chaotic night. The kids are pretty wild and were running around jumping on our furniture and being loud. I have a pounding headache now that probably isn't helped by the fact that I had two glasses of champagne with dinner. They have been gone about 20 minutes but I'm still totally tense now.

The neighbors have two kids, 5 and 18 months. The little one is a boy. J played with him on and off all night. They were high fiving, wrestling, tickling, you name it. I like that he is so good with kids- I really do. But I get so sad and jealous watching him enjoy someone else's children while Allison just watches TV and tunes the rest of us out for the most part. I also know J wants a son and he doesn't have one. That might be part of my sadness, too.

Allison does have her playful moments, but nothing like this. It probably shouldn't bother me, but it does. :(

Saving for the future

When Allison was a little over a year old, J and I decided to enroll her in the Florida prepaid college program. Wanting to be smart about saving for her future, we chose a plan that will lock in the tuition rate at current prices and cover her for 4 years of school and a year in the dorms at a state university. It was the smart thing to do for our perfect little girl who was growing and developing as she should.

To this day, she is still enrolled in the plan. Every month the bill comes in and we diligently pay it. However, that envelope never makes me happy when it's in the mail box. J and I have never really talked about the fact that we're paying for something that she may never use.

Yesterday I got our year end statement in the mail. We have paid almost 25% of her tuition. That's almost a full year of college for her that has been paid. If things were different I would be beaming with pride and imaging her as a young adult attending classes and living the college lifestyle. Instead, for the first time, I flipped through the enclosed brochure to see what the refund/cancellation policies are.

If we cancel the policy due to disability, they will give us a full refund minus small processing fee. Maybe it's weird but I don't think I'm ready yet to cancel. I think if I cancel I will feel like I'm giving up on her. That I'm giving up on a cure or treatment that could change everything. After all, she's only 4. Who knows what advances are just around the corner?

I'm not even sure if I want to talk about what I've discovered with J since he pays the bill every month without asking me what we should do about it. He's probably in the same place that I am but I don't want to risk that he might feel differently and want to cancel now and pocket the refund.

Hopefully we will have another child. When that happens, I could possibly cancel her policy and use the lump sum to open a new account for the other child. That way it is still college savings we have been paying for, just maybe for someone else. But that feels weird also to be honest, like I'd be giving another child something that belongs to Allison.

I think I'm going to put my head back in the sand a little longer on this issue. Over time, I think we'll figure out what we're going to do and hopefully then it will feel like the right decision.

H1N1?

Whatever happened to H1N1? I guess it's still out there but the news on it is basically nonexistent. I wonder if it has really subsided in numbers or if it has just been overshadowed by other news.

Our Walgreens now has the H1N1 vaccine shots. I am toying with the idea of getting one for Allison. I didn't do it before because I kept putting it off, waiting to hear more news about it to see if it was safe.

I'm still not really sure what I want to do. Obviously I don't want me or her to get swine flu, but if it's not really a threat anymore do I want to expose her to a vaccination and possible side effects? I'm not usually weird about vaccinations but for some reason this whole H1N1 thing has me weirded out.

I guess it's time to do some more research.

***Update***
I have done my research. I think I'll be trying to get us our shots this week. Look at what I found on the International Rett Syndrome Foundation website in their H1N1 section:

Is my daughter with Rett syndrome at higher risk for complications?

Individuals with disorders that can compromise respiratory function or the handling of respiratory secretions or that can increase the risk for aspiration (e.g., cognitive dysfunction, spinal cord injuries, seizure disorders, or other neuromuscular disorders) are considered to be at a higher risk for complications. The Center for Disease Control and Prevention (CDC) in Atlanta reports that 477 people in the US have died from H1N1 influenza (flu), including 36 children, as of August 8th, 2009. Nearly 70 percent of these children had chronic high-risk medical conditions such as epilepsy, cerebral palsy or developmental delay, according to data published in the September 4, 2009 edition of MMWR News (http://www.cdc.gov/mmwr/preview/mmwrhtml/mm5834a1.htm).

Okay, so ~that~ freaks me out. If 70% of kids who have died from H1N1 meet those criteria, we are getting that shot. Rett is definitely similar to CP, involves seizures, and causes developmental delays so it's pretty much related to all three of those categories. Yikes.

I've got skills

Add another talent to my resume: Vomit catcher.

No, she's not sick. She just gagged on a banana.