Yearly update.

Update

Ah, yes, it is that time again. Time for our yearly update to the blog. I don't know if it really qualifies as a blog if you post as infrequently as we do. Perhaps given the nature of this blog it is a good thing when we aren't posting anything, it means things are going well.

Alot has happened in the last year and, unlike the last few, everything has been good! That is, no SERIOUS medical problems have befallen us, no tumor, no treatment, no radiation, no hospital stays. In fact, Eli got strep throat a few weeks ago and we realized that it is the first "normal kid" illness he has ever had. I will take that as a sign that our lives are becoming more normal, more stable (fitter, happier, more productive?).

Eli has not had treatment since last April and appears to be in full remission. He had a scan in April and everything looked good. We are all relieved. Scans now every 6-12 months for the rest of his life.

What's new?

Noa

Well our biggest news is that Eli now has a little sister. She is Noa,  and she absolutely adores him and hangs on his every word and action. Eli would prefer if she was interested in playing his games and stop slobbering on his stuffed animals, but he has as much patience with her as you can expect from a 5 year old. He loves to sing to her, help feed her and put the dirty diapers in the diaper genie. He is wonderfully good at talking to her and calming her down when she's crying. Eli seems to have very little jealousy or resentment towards her, he loves her and protects her vehemently. Protective like a good big brother should be. Although there was a point when she was only a couple weeks old and crying hysterically in the car when Eli asked "Daddy, are you sure we can't take her back to the hospital?" Like he was making sure that I had really thought this through. Having 2 kids is hard but it has been wonderful for all of us to have Noa in our lives. It takes some of the pressure off of Eli and makes our lives feel more normal than they have been in a long time. Plus, she's beautiful! And, man, what a head of hair!

 

 

Eli

Eli has really grown up in the last year. His physique is changing from toddler to boy and he has gone from the shortest in his class to one of the tallest. His physical and motor issues are still there but he can actually run now and has significantly more confidence with his body. His deficiencies are most obvious when you observe him on the playground trying to play with the other kids. He simply can't keep up. He can't do the things other kids can. In truth, his sister has already surpassed him in many ways: climbing, crawling, avoiding obstacles. His physical and occupational therapy have been instrumental in helping him gain the confidence that he can do things that are hard for him.


Mentally, Eli has changed; he is not the same boy he once was. For better and for worse. He is still the same wonderful, effluent, friendly, happy kid that everybody adores. He still has a strange charm that draws people to him. But he's also different, very afraid of change and doing things that are hard and sometimes very hard to deal with. Part of this is just growing up. Part of it is the result of surgeries and radiation. We will never really know how much. In addition to the all-consuming (no pun intended) food obsession, he has significant and somewhat debilitating anxiety that keeps him from trying new things or things that are difficult (which means just about anything). He also has some problems with relating to his peers and with social interactions in general. While some of this is related to physical and visual issues, some of it is more neuropsychological than physical. Much of it seems to stem from a lack of executive function, which, as I understand it is the part of the mind that oversees our actions, deems them appropriate or inappropriate, helps us understand rules, and interpret and anticipate the actions and reactions of others; I see it as sort of the meta-psyche. This deficiency makes it very hard to interpret and react to social interactions. He really has trouble with understanding how to interact with his peers. In many ways he is more mature than many of them and he has trouble relating to them. He has very little trouble interacting socially with adults (in fact, he's too gregarious with them). Eli really wants to interact with the other kids but he just doesn't get what it is that they want from a social interaction. This, coupled with his mental inflexibility really makes it hard for him to engage in unstructured play because he refuses to play by anyone else's rules (he has trouble understanding them and sticking to them). While these may all sound like typical little kid issues, and they are to a certain extent, he has obvious difficulty playing with others and it makes him very sad that he can't. He has begun seeing a great psychotherapist to try and help with all of these things and he attends a wonderful peer socialization group called Connect Us every week. Both of these things appear to be helping him.

His executive function, motor planning, eyesight and other issues have caused us some concern with regard to his schooling. While he is advanced intellectually, he has been deemed disabled by the school system based on his deficiencies and would receive assistance were he in public school. He will require help with certain things like staying on task, projects which require physical manipulation will need to be modified and he will probably benefit from the use devices to help him see better. In light of all this, we have decided to move him from the Waldorf school to a school called St. Elizabeth's for kindergarten. It is a new school where we feel his needs will be properly addressed and where his particular strengths will be valued and built upon. We don't know for sure how much assistance he will need but the class sizes are smaller than Waldorf and we are more confident that he will get the attention necessary to be successful both academically and socially. Time will tell if we are right; we rest easy in the knowledge that if we change our minds they would always welcome him back to Waldorf with open arms.






Rock Star
The new school got a taste of who Eli is at their spring festival in May. He's not the quiet, violin virtuoso pictured above, he's a frickin' rock star! Eli was not happy with the music being played by the DJ/M.C. of the festival so Eli asked him to play one of his favorites, a new top 40 song he loves on the radio. As chance would have it, the guy's kid has it on his ipod. They set it up and then Eli asks for the microphone. Then Eli takes over and starts belting it out, and dancing. It was a truly incredible impromtu performance. The kid has no fear of that stuff. You can't force him to go down a slide on the playground, but this stuff doesn't phase him. He repeated the same performance at a festival in Buena Vista. The bluegrass band wasn't playing anything he knew so he walked up and asked them if they knew "We areYoung". Not the forever young they were thinking of, so Eli asks for the mic and just starts singing it. In front of a couple hundred people. Cojones.

 Here's a video of it. Unfortunately, I was right next to the speaker so the sound is horrible.

What else has happened?

Make-a-Wish
Eli got his Make-a-Wish! A trip to HAWAII!! We had a wonderful time, playing in the sand and in the water and just having fun doing whatever Eli wanted to do. We ate wonderful food, went to a Luau, saw crazy fish and sea turtles and did a lot of relaxing on the beach. 9News in Denver did a story on Eli and the High School that funded his wish. Read the last post for more on that.

As an ambassador for Make-a-Wish, we also got to ride in a limo for the St. Patrick's Day Parade in Denver. That was fun!

Daddy's Research on Eli's Tumor
I started doing research on craniopharyngioma, Eli's tumor. There is currently no effective chemotherapy, surgery and radiation are all that work. I got a grant from the Morgan Adams Foundation to fund the work and we have found what appear to be 2 potential pathways with drugs in clinical trials that may prove effective in treating cranios. It's very exciting and hopefully we can put the everything together to start a clinical trial in the near future.

Eli is going to be an ambassador for the Morgan Adams Foundation this summer too. He will serve at a few events including their Concourse D'elegance in August. We have recently become more involved with  MAF and Meagan and I were the primary speakers at a fundraiser this spring where we both spoke to a group of potential donors at the Denver Country Club. It was fun and hard a the same time. Meagan had the harder part talking about Eli's diagnosis and treatment. I just had to tell them the science.

Mommy Back in School
Meagan has taken most of the last year off on maternity leave which ended a month ago. Things have gotten crazy again but we have a nanny for the summer to take some of the pressure off. We'll see how we survive with both kids after that.

Crazy Hair Day

It was crazy hair day at summer camp and Eli and I had just decided that a fauxhawk with stars would be great for him when Noa woke up. We walk in the bedroom and she has the craziest hair of all! I have since figured out that she likes to lay in bed and stroke her hair which makes it stick out like that.