Tuesday, January 26, 2010

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:)"

Sunday, January 24, 2010

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. :(

Monday, January 18, 2010

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.

Sunday, January 17, 2010


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.

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.

Monday, January 11, 2010

I've got skills

Add another talent to my resume: Vomit catcher.

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

Sunday, January 10, 2010

Rett Clinic

Allison participates in the Rett Syndrome Natural History Study. The study is designed to follow the progress of girls with RS to document how the genetics affect symptoms, progress, and development. The hope also is to lay the foundation for clinical trials of future treatments. We meet with the research team every six months and this time it was in Tampa.

Saturday morning we loaded up the car at 6:45 to begin the long drive over to Tampa. It was dark and about 30 degrees and raining when we left the house which was not fun at all. Despite missing our exit on the interstate two times we were able to get there in time for our first appointment.

Allison's geneticist is from South Carolina and he is one of the principal investigators of the study. We met with him and his nurse first. They ask us a billion questions about her and interact with her, watching her responses. They perform a neurological exam on her, and then they measure her hands, feet, head, and do a basic physical exam. We then have the opportunity to ask about any questions that we have. We usually ask them about their research and if they have any updates on developing treatments, etc. I am always super tempted to ask them how they think she is doing or if they think she will continue to progress, etc. The hard part here is that they can never really answer us and have to be vague because the truth is that there is no predicting how Allison will grow and develop over the next few years. She is doing great now and making progress but that could change over night.

Her second appointment was with the dietitian and measurement people. The dietitian usually asks us about her eating habits and what foods/drinks she prefers. The measurement lady literally measures every part of her- almost all bone lengths, width of her arms, legs, and does skin fold measurements. She weighed in at 39.2 lbs and is 42.5 inches tall. When they plotted this on the growth curve it had her at the 50th percentile for height and weight compared to normal 4 year olds. This is fantastic news! Girls with RS are prone to growth failure and they drop off the growth curve starting around 3-4 years of age. In fact we have met many girls with RS who appear to be like 7 or 8 years old but are in fact in their early teen years. Allison's growth is a great sign that she will continue to keep her physical skills in place which in turn mean that her GI and orthopedic issues will also be minimized.

Allison's last appointment of the day was with a communication device specialist. We often say the the biggest disability Allison has is her inability to speak or communicate meaningfully. The device we looked at uses eye gaze to run an elaborate communication board. Girls with RS often don't have the motor skills to sign or type so eye gaze is how most eventually learn to communicate meaningfully. Allison wouldn't sit still long enough to try it out (she was exhausted after the first two appointments) but I used it. It was super cool! I could run the machine using just my eyes. Lingering on certain parts of the screen allowed other menus to open and I could have done all sorts of applications that ranged from extremely basic to very sophisticated. Right now, honestly, Allison is no where near being ready to use a device like this. She does not have the patience or the need. She gets what she wants just by vocalizing or banging on things. What the appointment did do, however, was allow us to see the variety of communication options that will be out there for her when she is older and ready or interested to use them.

The clinic provides lunch for the families and we spent the last part of our day eating and socializing. There were probably 30+ other families there with girls ranging from 2 to the mid 30's. It is often overwhelming for us to see the broad spectrum of symptoms the girls exhibit, most generally much more severe than Allison. I always feel a strange sense of calm and understanding when I am around other RS families. I could just be with them all day absorbing information, advice, and sharing stories. Despite the day being somewhat emotional, I left with a unique sense of hope and excitement about the future. This is a huge improvement over the past, where I have left fearful and afraid of what is to come for Allison. She continues to amaze me with her spirit and progress.

Saturday, January 2, 2010

Baby it's cold outside...

We shopped today at the Outlet Mall. It was cold and windy by Florida standards. Here are some shots of Allison in her hood.

Friday, January 1, 2010

Alternate universe

Last night to celebrate New Year's Eve, J and I went out for dinner before heading to a party. My mother graciously agreed to let Allison spend the night at her house so we could go out.

While at dinner there was another family just like ours sitting a few tables away. There was a mom, a dad, and a little girl who was probably around 4 or 5 years old. She was surrounded with stuffed animals and other little girl accessories that she had brought to entertain herself with. We occasionally could hear little tid bits of her conversation with her parents. She was well-behaved for the most part with a few little stints of being out of her chair and being reminded of her manners, etc.

As we were eating I was watching their family from afar and sort of imagining what life could have been like for us if things were different. For the most part, we don't take Allison out to eat with us. We used to and my desire was to continue to do so. She just has seemed to get more and more difficult in public at restaurants over the past few years. She no longer fits in high chairs, but booster seats don't have straps and/or are too small for her. She doesn't want to stay sitting in a chair or booth and having her on my lap is dysfunctional. In addition, she has no patience when she's hungry and just can not stand having to wait for her food.

For a brief moment last night I imagined what it would be like if Allison could be out to dinner with us like the other little girl with her family- if she could sit in her chair, feed herself, and entertain us with her conversation. Her parents looked a little bored and like they maybe couldn't get a sitter.

How ironic is it that they were probably wishing they could be out alone on a date like we were and we were wishing that we could have our little girl with us carrying on and disrupting our dinner out.