Hello my friends =) Well we made it through Christmas and New Years. Alec continues to be stable. We'll take it. We continue to work very hard with him pushing him everyday, although he does get some down time. He still remains off high dose steroids and is just on a maintenance dose. We haven't had his cortisol checked in a while so I'm looking to do that and also have his crp checked again. We get that done in between MRI's; it measure if there is any inflation in the body, which in terms could be a sign of tumor.
I have joined the parent board of Kidsvcancer. I don't know how Nancy finds the time to do what she does but she truly is amazing. Kidsvs cancer is doing some awesome research with brain tumor tissue. I like to stay in the loop, it's an insurance policy for me. No surprises will ever be thrown our way. I had fun organizing the Kids Bowl A Thon with great assistance from Cans for Cancer.. THANK YOU GUYS!!! It's was a really good turn out and the best part was that Alec was involved. Pictures are posted on my facebook page. I was also very excited to hear that Guardian Brain is teaming uo with Schneider's for a Brain tumor support group. I think the kids need it to which is something I was discussing with Mary. Not so much as to sit in a circle and talk about their "feelings" but the younger gang, like Alec, Hannah, Danny, and our new friends Tanner. Can, well just be kids =) The supposrt group is primarily in Nassau but looking to come out here to Suffolk which is great!! They too are getting really involved with research and you know I am going to be all over that. Guardian Brain is having a fundraiser on April 18th at the Brokerage Comedy Club in Bellmore. I can't wait!! Tickets are only $20, you can call me/ e-mail or of course facebook me (Amy Carlin Mardjani) if you are interested let me know so I can start forming tables. It is going to be a fun night.. whoo hoo!!!
Good News... Alec's PA is expecting and having a girl. Alec laughs when I talk to him about it. I'm not exactly sure why, I guess he kinda thinks as Dr.s and those in the medical profession as such.. I guess they can't be parents if they are Dr.'s.. LOL not to sure what he's thinking but he laughs and that's all I care about.
He is doing great with his Dynavox (His touch screen computer device for communication) It is taking alot of time to tweak how he can use it, but he's getting there and is not objecting.
Alec really has a great team this year in school between p/t, o/t, speech, vision and of course Mrs. B (Buccos) Alec still can't tolerate anymore than a 9:30- 1:00p.m day I sometimes this he's just trying to get home to play the wii or x-box. His day is always jammed pack with therapies and even once home. I drop his ng tube for supplementing feedings and hydration. He has to ride his bike (motorized pedals), go in the stander, vibration therapy. It's non-stop.. but it's going to work I know it is. He gets a kick out of the vibrating mechanisms I attach on his hands for stimulation. I call hum a ladybug and he cracks-up. We try to get him into the pool for water therapy. He actually needs a flotation suit better than the life jacket he has. His life jacket is just to restrictive. We found one in the abilitations catalog we'd like to get him. We are trying to get him into see an orthopedist. We are concerned with his head drop and being that he had radiation to the spine we want his spine monitored as he grows. Also of course his hips and he is turning his left foot out. It's hard to explain. He has braces but without them on his position is really bad and to me has gotten worse not better. I was told thats what the braces are for, well duh I know that. I have an appt. in March =/ that was the earliest appt. I could get. His MRI's will be shortly after that. I can't believe it's peeking nearly 3 years since dx. 2 years left and I will feel better. I met up with another mom, Litia and her son was diagnosed at 3 with Medulloblastoma. He didn't walk for nearly 8 years he's 11 now and walks fine. She restored my hope and just thinking about that keeps me pushing Alec. She to of course said it's a lot of work, but look he's doing great and he is 11 now =) and still cancer free!!!
It's been along time since Iv'e seen Alec's wholistic Dr. she of course doesn't take our insurance. But I want to take him back. Alec has been stable with his supplements he's on now, but I'm wondering if their is more we can do to perk him up a bit. I'll keep ya posted on that one.
Kevin is doing well in school for the most part. We've had some concerns that we have addressed with his teacher and the principal and I'm hoping we are on the right track now. In September Sean starts pre-school... Holy cow, to even type that. He is still in Early Intervention but aging out of it. Being that he is turning 3 in April he will have to get his services through the school district. We are going through the evaluation stages now. I think we are going to send him to St. John's Catholic School for preschool.
Well sorry to cut this short but I have to go pick up cookie.
<3 Amy