Here are some pics from the Halloween birthday party I had for Legend & Alano. Starting at the top going down: My husband Travis with the boys on the night of October 12th. Alano was fascinated but also acting shy & scared at the same time when he saw the #2 candle with the flickering flame! Then he tried to get a decent shot of them on Halloween while they went out trick-r-treating (Legend is a Hot Wheels race car driver & Alano is SuperBoy 8-D!). Up above is their delicious ice-cream cake at the party. Down left, I'm holding Legend with my mummy costume on, basically a roll of toilet paper and some gauze tape wrapped around my head! Above that, I'm holding Alano while in my robe as he continued to show his awe for the candle! The party was just what the boys needed. Although my dad was sick and my sister Tania was working, I was happy to have my other sister Rosa over with her family, as well as my aunts, uncle and in-laws. The decorations were fun to put up to make it festive & a bit on the scary side with cobwebs & spiders everywhere! But I have to say thankfully that I'm glad the boys weren't born close to Halloween! It was a cool idea but not to do every year. I believe the day belongs to the kids only. But then again, I haven't been out in so long that EVERYTHING really has been about the boys...and nothing else, until the sixth month mark hits this month that I've been on crutches with an unresolved ankle injury. Now I can finally say that surgery is going to happen sometime before Thanksgiving. Yep, I'm a Mad Mom with a busted ankle but I can still go about my mad ways! I'm trying to avoid the story because it's really complicated, long and has nothing to do with writing about Alano. Then I had to take back these words and realize that yes, it has EVERYTHING to do with not just me & Alano but with Legend & Travis as well. The fact that my injury happened a month after Alano's diagnosis wasn't just coincidence, it was nothing short of a miraculous blessing in disguise. To try to keep it short and sweet, there was no accident, no fall of any kind, it was purely spontaneous and the last unexpected thing to happen ever in my life. In a month's time (May '09), I started with a dull pain around my ankle, which progressed to limping everyday as the pain got worse to having an inverted right foot with a cane for support. After realizing it wasn't an ordinary flare of arthritis, I saw the following people in order: my PCP, an orthopedist (who I learned later didn't specialize in foot/ankle injuries), a podiatrist (who put me in a cast for a month so he avoided the operation...THANK GOD!), another orthopedist whose specialty is the foot & ankle and a new rheumatologist. This period lasted from mid-June to September, with multiple x-rays and two MRIs thrown in. I had a spontaneous rupture of a tendon and two ligaments in my right ankle, from what you won't believe when you read this...symptoms of prednisone withdrawal. It struck me not once, but twice...first my esophagus last year and now my ankle. This is a horrific thing to really get into but the best thing I can do is post a link to a website that has at least 1,500 stories similar to mine and WORSE. Go to Medications.com to read as many stories as you can to get the jist of it. I do have an autoimmune disorder called mixed connective tissue disorder (MCTD) which includes lupus, rheumatoid arthritis & scleroderma. I've been suffering for the past 15 years or so, very slowly and subtly, with only joint aches and pains as my main culprit. But emotionally, my extreme weight loss and difficulty in gaining the pounds back is what affected me the most. Two pregnancies later and the discovery of my savior med low dose naltrexone (LDN), I am much better than I have been in years BUT this ankle issue is killing me...and baffling the hell out of my doctors. The end result is that the foot/ankle orthopedist wants to do foot fusion surgery, not the simple cut the tendon/ligament loose and resew them again surgery I expected. My right foot is so inverted at this point that I have no choice but to get the metal screws in and get my foot straight again. I am absolutely scared but relieved at the same time. So I'll be casted up and homebound until well into 2010...and that is fine by me (for now). I just hope to be able to walk on my own again, pick Legend up from school, pick Alano up to simply carry & comfort him, to take the train or bus anywhere I need to go by myself, to be ME again.
Alano's biomedical treatment will finally start as early as next week at the Path Family Center (PFC). We will sign up to become official members at the center when we attend the meeting of the Staten Island chapter of the National Autism Association (NAA) this coming Thursday night, which will be held monthly there as well. Starting next week, we have a schedule of seven classes to go to that will involve multiple trips to Staten Island in the course of two weeks. The orientation last month was such an eye opener, the newly built, three story center was incredibly beautiful just on its own! There was an immediate sense of comfort, like I was meant to be there. After seeing the PFC team each speak their stories of how they were led to become a part of the center, I was like a balloon filled with tears, ready to burst but I kept calm. I was inspired most by Elisa Moller, a nurse at PFC who became one solely to help her son continue in his recovery of a long battle with autism and to help other families do the same. She went through the ordeal almost ten years ago, a time that I couldn't fathom thinking that ASD (autism spectrum disorder) existed at that time. Travis and I left that night, after meeting Carla the nutritionist & Katherine the ABA/Special Education teacher, two wonderful ladies, with the feeling that this is where we belong as a family. The trip and toll to drive over the Verazanno Bridge multiple times will be daunting but we have to do it! It is embarrasing to complain about a mere $10 toll but it adds up and having to leave the boys with my mom is a lot for her as well. Let me just say, as I have said countless times before how blessed we are to have my mother in the apartment right underneath us! I can't get over it. God does absolute wonders for us! After the classes are done & lab tests are prepared and sent out, I hope to be able to make the trip, cast or no cast, to have the consults with the PFC team for Alano's lab results. Then comes the three month protocol which will be something to look forward to.
I sure make everything sound easy in this blog, don't I lol??!!
AAAAAAAAAAARRRRRRRRRRRRGGGGGGGGGGGHHH!!!!
THERE!!! I'm freakin' out of my mind but I hide it VERY WELL!!! Writing is a cherished outlet of mine, whether by keyboard or by pen so this is therapy for me! It's going to be a tough road for me but also for my little "pollo" but we'll make it together, with the help of Travis & my mom...and Legend too. Legend made my heart smile the other day when I was wracking my brain over the class schedule from PFC. He came over and was curious about what I was doing. When he found out it was "for Alano's therapy", he went to get a piece of paper and started to draw out what looked like a chart. He then wrote these scrambled up words that looked like the exact chart I write in Alano's Food, Mood & Poop Diary. He saw it once a while ago but was so impressed by it that he remembered what went where! Then he grabs my schedule sheet and proceeded to draw two cute figures, Alano & himself, holding hands and then asked me to write above the figures "Alano & Legend Best Friends Forever". It was just one of those beautiful moments when you can't believe that a five year old understands and is able to express their true feelings 8-D! Alano is doing okay so far with the ABA therapy that started last week but he then got really sick with 102 degree fever for two days and ended up with chest congestion...and so did Ledge. He's still irritable as of today but hopefully he will be able to get through his normal 15 hours of therapy this week...and for the next year of his life!
I leave you with a five minute video that we shot of Alano at the end of September. This is to show how delayed he is with language. He really tries hard to speak as you can tell and it's been like this for the past year. It's so funny when you see him hesitate for a second and looks directly at the camera, as if he knows he's being filmed! Then you'll see a weak imitation of me trying to be the screaming chocolate character from his favorite Spongebob episode lol! The next time we do another film is at the end of the year, hopefully we'll see a difference in him 8-).
