Sunday, June 28, 2009

Good Golly, a New Lolly

Methyl B12 is so important for so many kids on the spectrum. Biologically, it is a critical piece in the methylation cycle. For Henry, MB12 brought on so many speech and socialization gains -- a real miracle for us. In fact, here we are on Doctor Neubrander's website talking about it. Henry started MB12 injections at 4.5 and got them, mostly daily, until recently. We have since discontinued the injections -- everyone thinks that, for now, he no longer needs the intense B12 dosing - though he still gets some orally.

Stan Kurtz, who has done so much for his own son and many other children (through Generation Rescue and elsewhere) -- recently launched a new MB12 lollipop: RevitaPop. I could not resist trying them. They are made with natural ingredients and are even GFCF. It remains to be seen if Henry will use them -- he is not a big sweets eater at all -- but I can attest to the fact that these pops work -- I get a nice energy and focus burst from them. They were very nice to have around during all our appendix trials and tribulations, when I needed a little pick up. I also think they are delish -- and would imagine that most kids will love them (and we will keep trying with Henry!) In the meantime -- I am keeping them for myself (and will definitely reorder!!!).

The Tale Of a Ruptured Appendix and Burst Vacation Plans

Alas, right now I should be poolside in Provence. Instead, I am in my living room. Not a bad place, just not where I planned to be. A few weeks ago, our annual vacation plans went awry.

Actually, my DH's appendix went awry and everything cascaded from there. I was enjoying the annual cocktail party for Henry's school -- chatting with old friends and meeting many parents who would be coming to the school in September. Because I am a nervous Nelly and Cliff had not been feeling well, I was checking my phone pretty regularly and even had suggested to him that Henry's nanny stay until bedtime to help him. I did not check from about 8:40 and 9:10 and then I discovered I missed 11 -- yup 11 -- calls in that time -- starting with "call as soon as you can" and ending with "at Mt. Sinai, get here ASAP"! I did not even know who was at the hospital...or why. I ran out of the party and jumped in a cab. In the cab, I got through to our nanny who was in the ER with Cliff. Her 14 and 12 year old daughters were with Henry (thank goodness they were there and he did not have to go to the ER too!). Everyone seemed pretty sure that it was Cliff's appendix and I was so impressed with the ER at Mt. Sinai, they were really attentive. Cliff's internist was contacted and identified the surgeon he wanted -- and he showed up in the ER at about midnight to see Cliff. Cliff had a CT scan at 4am and was then moved to a room. He went into surgery that morning and was there for about 3.5 hours -- apparently one of the messiest ruptures his experienced surgeon has seen. Long story short... after a week in the hospital (with Henry visiting and asking hysterical questions about who the surgeon was, what medications were administered etc.), Cliff was released, and it was only after about two weeks at home that there is any semblance of normalcy returning (and he is still far from being himself).

Many thanks to all our friends who really stepped up to help us out and offer support and assistance -- I could not have done it without you guys!!!

Oh, and somewhere in there, Henry caught the flu (regular type A not the swine flu) and missed almost the entire last week of school (made it to the end of year party the last day). He improved and then relapsed this Thurs.

The internist told us there was no way we were leaving for France on June 19 as planned nor could we leave a few days later (my pipe dream). So on June 18 I had the sad task of unwinding all our plans. The folks at FlyOpenSkies -- our carrier over the Atlantic -- could not have been nicer, I had emailed vouchers for our full fares within literally 10 minutes (and a personal email telling me how sorry they were that Cliff was sick and hoped our next trip was great -- way to build customer loyalty guys!!!). Our flights down to Marseilles were not refundable and not even a credit was offered but I will still fight that battle (different airline).

Henry had plans of his own -- first he said, "Why can't we just leave him here." Good question, but I behaved like an adult and explained that we were a family and we take care of each other. His Plan B -- "Why can't his own mom come and take care of him." (Ummm . . . because she is in France waiting for us, but Henry did not want to hear that!). In the end, Henry has been pretty good about it -- though he suddenly has shown a hitherto unseen interest in speaking French. He has had lots of playdates the past week and hopefully will this coming week as well if he shakes his flu bug (cough and fever only).

Camp starts on July 6 --and Henry is really excited about it (we went to pick up his t-shirt and other gear because he was sick on the welcome to camp night so he could check it out). This is an exciting and nerve-wracking adventure for me -- Henry is going to a typical camp without an aide, all day every day! Fingers crossed...

Henry Loves The Bubbly

One of Henry's OTs -- the fabulous Jodi Jennings -- shared this photo a few weeks ago of Henry after an OT exercise.

Jodi described it like this:

"Henry created a huge tub of bubbles by blowing through a long strip of tubing. Henry called the tubing his elephant trunk. What began as dishsoap and water in a large bin turned into bubbles overflowing like a volcano. Henry was very motivated to keep steady synchronized breathing and had great breath support to endure this activity for several minutes at a time. He was very goal oriented and would only stop if the bubbles reached the top. This activity strengthens not only our facial muscles but also requires core activation. This was a great activity to share with a peer [he was doing this with another child at the OT gym] because of the nice regulation created by breathing. And then, it turned into a great pallet for expansion of his imagination and pretend play!!"

One of the most amazing things about Jodi is that she really combines so many modalities in a treatment session. She is always changing theses up and building social goals into her OT sessions, often using Floortime principles. The best thing is that Henry loves to go to see her -- who wouldn't if you got to do stuff like this! BTW, She is also a terrific cranio-sacral therapist. Is there anything she can't do (oh yeah, she took these photos too)???