Summer Approaches

When I saw that it had been three months since I updated this page, I knew I had to stop procrastinating. The short version is that AJ's biggest problem lately is his sister. She is very mobile and she loves AJ and his toys waaaaay to much for Aidan's liking sometimes. Its clear he really does love her too though, as long as she doesn't touch his cars... or his puzzle pieces... or her own toys... or the laundry. Ok, so he doesn't allow her to do much, but he's always happy to see her and he loves to make her laugh.

The other major "problem" in the champ's life is that I won't constantly supply him with keto chocolate fudge. :-) He is doing well with the diet, staying near his target numbers and not fighting with us (too much) about meals. We recently changed from our initial 4 small meals plan to three meals and two snacks. The transition has been tough because both he and Hannah were used to eating at certain times of the day. However, planning a slightly larger snack to have at school and having some calories allotted to give medicine at bedtime is going to pay off in the long run. The #1 meal by far is cheese, pepperoni, tomato paste & butter along with his chocolate for dessert. He's also really enjoyed the waffles and bacon meal, and he's done a hot dog in butter once or twice too.

School is going very well, and he still loves going. Just today he asked for "Miss Anne" all through breakfast and I had to explain that he goes to school T, W, Th. Our grasp on the days of the week are a bit tenuous though. "Yeah Daddy. Tuesday, drive a car. Go to School, Miss Anne. Do letters and chocolate fudge at school." Luckily, Sesame Street is like the neuralizer from Men in Black; just look at this flashy thingy and you will forget everything...

We have also stepped up his therapy sessions. We had a second IEP meeting with the folks at school and he's getting OT, PT and speech every week. The school year is almost over, but we have secured him a space in the summer session which is fantastic. At the meeting all of AJ's goals were set for the near future, so they can carry over into the summer. Since I keep throwing that phrase "OT, PT, and speech" around, here is what they are working on:

• Occupational Therapy - This is the fine motor stuff, and in school they focus largely on skills for the school setting like pre-writing, cutting paper, etc
• Physical Therapy - Gross motor stuff, particularly core strength. Gym class with some focused goals.
• Speech - Main focus is original speech. AJ has a great memory, and can appropriately use phrases he's internalized. "Oh my gracious! Like Jojo says." However, creating a thought from scratch - particularly in the form of a sentence - is still difficult.

We (and by we I mean the wonderfully diligent Mommy) also sought additional therapy, and we've started speech and OT thanks to Dr. Bean's prescription. Everyone that comes to play with us this summer will be acting as AJ's physical therapists. Make him walk on the beach sand, crawl through an obstacle course, or do a puzzle on his hands and knees instead of sitting. We even introduced him to wheelbarrow races!

As always, thank you for your love and support. It means a lot, no matter what form it comes in. So keep sending those texts, comments, cookies, cards, cookies, and cookies. :-)

By my calculations, I have 4 minutes until Hannah wakes up again and starts yelling, so I am going to rapid-fire this update....

• Thank you to everyone who has donated time, money, and even baked goods to benefit Dravets research. Sarah and I are not only super impressed with everything you've done, but also very touched.
  
• After AJ's blood draw we stepped up both his Keppra and Prednisone tapers. He'll actually be done with Keppra after this week, and by April he'll be off the steroid as well. If AJ gets sick after he's off the steroid, he'll go back on a stress dose. We'll have to hold off on the ketogenic diet as long as steroids are part of the contingency plan, but we're still considering the power of heavy whipping cream.
  
• We met with the good folks at McClary Elementary on Monday, and AJ got started at preschool on Tuesday. He'll go for one hour on T, W, Th until he finishes the steroids, and then he'll be able to go the full 2.5 hours of class. As we learn more about the people he is working with and the things he is doing at school, I'll post some more either here or on the DDC site. The short version is that he'll get some OT, PT, and speech therapy in addition to the other great stuff they do in class. Today he walked in the door with a red and white hat he made out of construction paper and he said "Dr. Seuss day Daddy!" He absolutely loves school.
  

...And Hannah is awake. Time to feed and snuggle the little one. Thank you again for checking in and for all of your support.

Two quick things

First of all, I finally got around to putting up the "What Can I Do?" page. I need to say again that you have all been truly wonderful already, and this page is just a response to your continued offers of support.

Also, on Monday AJ has a blood draw to check on all of his medication levels and such. Based on those results (and the ever-increasing size of AJ's cheeks) we are going to talk to Dr. Bean about possibly tapering his steroids a bit faster. I'll post the updates on this blog.

A few changes

Just wanted to let you know that I finished the "Synopsis" tab and added a few more links. Next on the to-do list is a "What can I do?" section for all of you amazingly supportive people. The organization I would like to lend our collective support to is the IDEA League, so feel free to check the site out, donate, or get in touch with me about what we might be able to to together.

I also have to get around to a few smaller tweaks like a link to AJ Update on the DDC page and maybe a calendar of appointments and such.

In AJ news, he's currently leading a parade around the couch while playing the triangle. He rocks.

New Site

Hey everyone.

This is fairly spartan right now, but eventually I will have more of AJ's history, appointment schedule, results, etc posted, as well as some helpful links.

As far as yesterday's appointment with Dr. Bean, it went very well. Here are the highlights:

• He was very excited about AJ's most recent EEG. (Its always cool to hear your neurologist get excited about test results). There was no evidence of those absence seizures that he'd been having recently.
• Dr. Bean attributes this great result largely to the prednisone that we started him on after his most recent hospitalization. He can't stay on the steroid forever, so we are going to start a slow taper (5 mg a week, he's on 50 mg a day now) until he's off them completely.
• There has been a lot of talk about the ketogenic diet, and that most likely is still in our future; AJ has until we finish his steroid course to eat pizza and goldfish.
• We're going to start tapering his Keppra dose a bit faster than we were (3 ml/week instead of just 1ml), so we will be done with that medicine in 5 weeks. Research seems to indicate that his other meds are more effective for his condition and seizure type. It will be good to have one less thing to get him to take every day.

Again, thanks to everyone for your concern and well-wishes. Check the DDC for all of the fun stuff like snow forts and babies wearing cow jackets, and I'll keep you up to date on everything else here.