Monday, December 29, 2008

Holiday Wind Down

I put my nieces back on the plane this afternoon. A mix of sadness and huge relief. I am glad I have until the 5th before I have to go back to work. I need the time to unwind. But I will miss them. The boys were entertained - I got to go through my bathroom cabinets yesterday. It was nice. I guess I will spend the rest of the week on my bed and getting boxes in from the garage.

I went to the doctor again today - one more test, this one non-invasive. It does require barium, but no fasting, no prep. As long as I can get the lemonade stuff instead of that thick, chalky nasty stuff. That stuff is infinitely worse coming back up as it is going down. And since I can't keep it down... Anyway, unless something radically different comes up in this test, I have irritable bowel syndrome. He gave me a prescription to see if it improves my... um, situation.

Jimmy's asleep, perfect as always. We have stumbled across Dewey Cox on cable. Spend $100 a month on DirecTV and all they have on is crap.

Friday, December 26, 2008

Thursday, December 25, 2008

Merry Christmas

Hope everyone has a wonderful day. Here is the last few days in photos...

The kids decorating cookies...

Jimmy, pre-surgery...

The new swingset, courtesy of their Nana and grandpa...

Jacob at the mall...

I don't believe in dragging Christmas out. It brings out the very best and worst in all of us. So, the tree comes down tomorrow. Onward to the New Year!

Wednesday, December 24, 2008

Santa has arrived...

Presents are ready and we have an extra gift this year - Chloe has gone into heat. She has been acting weird all day and will not shut up. It just dawned on us what is up with her. Oh joy. As soon as she gives it a rest, we are getting her fixed.

Waiting for Santa...

More like waiting for sleeping children. Once I get the presents out the basement, I am going to go to bed myself.

Katie and Sarah are up from Texas and I had the kids decorating cookies. More than we need for Santa or even ourselves, that's for certain. I will likely drop them by friends tomorrow. Weight Watchers will need to begin again, sooner rather than later. DH is currently trying to explain Santa's visit with the help of a Magna Doodle. Jimmy is doing very well post surgery. I think the whole process is more draining on the parents rather than the child. I get so emotional - Jimmy is just such a fragile gift to me.

Hope Santa arrives at everyone's house safely.

Saturday, December 20, 2008

No Inauguration for Jimmy

I had toyed with trying to figure out a way to take the boys since we get the day off. Rope a couple of extra sets of hands and go down. He has an adaptive stroller we use for major outings. Somehow I don't think security will understand the distinction of a stroller needed because of disability. If it doesn't look like a wheelchair, it isn't.

I am quite disappointed, actually. I appreciate the need for security, but the Obama Inaugural Committee has just discriminated against a whole bunch of people - families with small children, kids with disabilities, and elderly people who need chairs. That's unfortunate.

Friday, December 19, 2008

A Much Needed Break...

Last day of school before two glorious weeks off. It's packed full of stuff - I will be far from bored. But.. at least I can wear jeans everyday!

I got a voicemail from my doctor's office about my CT Scan. Enlarged lymph nodes, but nothing else. I guess irritable bowel syndrome it is, though I am not a fan of the diagnosis of exclusion. Should I give up coffee? Red meat? I haven't had a glass of wine in so long, but it wasn't doing me any favors. And I love my cabernets.

At least I can shift my focus back to Jimmy in preparation for ear tube surgery number five on Tuesday.

Tuesday, December 16, 2008

Returning to my regularly scheduled blog...

I am back... my classes are over until mid-January. I had my CT Scan this morning (no, I still don't know why I have abdominal pain...) I have three days to get through until our holiday break - a break in name only as I will have not only my kids but two my sister's as well. I am looking forward to having time to clean out my minivan and the opportunity to wear jeans everyday.

More of an update tomorrow.

Sunday, December 07, 2008

Another form letter...

As your constituent, I am writing to urge you to sign on as a cosponsor of the Disability Savings Act of 2008 (S. 2741). This bill was introduced by Senator Chris Dodd in March 2008.

The Act is designed to encourage individuals with autism (and other disabilities) and their families to save for disability-related expenses. It is meant to supplement rather than to replace benefits provided by other sources (including Medicaid and private insurance). In fact, S. 2741 authorizes specific “Disability Savings Accounts,” which are similar in many respects to existing 529 college savings plans. Provided certain rules are met, Disability Savings Accounts will be exempt from federal taxation.

Currently 1 in 150 children are diagnosed with autism and the financial costs are daunting to most families. This is why these savings accounts are so vitally important. They will help to reduce an unreasonable financial burden for millions of families and make the Internal Revenue Code more fair. Right now, parents can save, tax-free, to send a child to college. S. 2741 will allow parents to save, tax free to meet the life needs of a child with autism.

I urge you to become a cosponsor of the Disability Savings Act of 2008, S. 2741, and help children with autism live full and productive lives for all their years.

I need to pay more attention. I didn't know about the Disability Savings Act of 2008, but legislation like this is desperately needed. We would love the opportunity to save responsibly to help meet Jimmy's potential needs as an adult with a disability. Each boy has a college account that we fund, but funding Jimmy's is bittersweet as we will likely

Maybe we should move to Pennsylvania

NEW YORK, NY (July 9, 2008) -- Autism Speaks today commended Pennsylvania Governor Ed Rendell for signing into law the most comprehensive autism insurance bill in the nation. The new law provides $36,000 a year for Applied Behavior Analysis (ABA) and other necessary treatments, and goes beyond many state insurance reform measures by mandating coverage up to age 21 with no lifetime cap. It also creates, for the first time under Pennsylvania law, an expedited appeals procedure for denied claims as a safeguard to ensure compliance by insurance providers. Private insurers will be required to provide coverage beginning in July 2009.

No lifetime cap... wow! Nice.

Saturday, December 06, 2008

Biddy Ball for Dummies...

While Jimmy had a rare Friday session with his therapist in home, I took Jacob to his first Biddy Ball practice. He made a basket... while I was in the bathroom. It was his first attempt at organized sports and his lack of experience showed. Several of the kids had been on the team as four year olds the before. Jacob is barely five. I think we are going to set him up with a basketball to practice dribbling. He didn't get that at all. It will get better. Heck, he improved in the hour we were there.

This is my first competitive sports experience. I don't like this soccer mom thing, or in this case, basketball mom team. I want my baby to be instantly successful, I felt bad when I shooed him back to the group when he kept running over to me in the bleachers, and eying the other team with suspicion. Maybe I am not cut out for this kind of normal. Maybe martial arts would be better...


Wednesday, December 03, 2008

Can I go to bed yet?

With the Ultimate Fighter, Wednesday nights can be long. I am particularly ADD tonight, so I am not paying as much attention to the fights as normal. Jacob is being a major chatterbox and making his father really crazy. And I am really crampy and want to go to bed. It looks like my Christmas gift this year will be a CT scan. I pick up the referral tomorrow. It's the last test before I get labelled as having garden variety Irritable Bowel Syndrome. It's kind of hard to imagine it being IBS given the level of abdominal pain that I have, but with the exception of that polyp, they have not come up with anything else concrete.

I have twelve more days of school before I get a break. I am really looking forward to it. I am exhausted. I need a nap, actually several. And my break doesn't really look that relaxing in my planner right now.

All reports are fabulous regarding the new IA. The teacher is doing a great job of keeping me in the loop. It is so hard to turn your kids over to other people, especially when he can't speak for himself. Maybe he is forever my baby, at least until he has his own voice. I wish I knew what he thought of his day, what he thought of the people who work with him. He never seems adverse to much of anyone, so I can't judge his feelings about others solely based on his behavior. I have to go on faith in those around him and those who are closest to me know that has let me down before - terribly, horribly, even tragically.

Enough... I am useless in this state. I am off to bed.

Forbes article on autism.. Health Needs of Autistic Children Often Unmet

Worth a read...

"Bono -- who currently serves on the board of "Safe Minds," a nonprofit advocacy group in Durham, N.C., focused on childhood neuro-developmental disorders -- explained how thoroughly the needs of an autistic child can alter a family's routine.

"Even if an autistic child is well enough to go to school, schools are often only half a day or so, so many parents choose to stay home so someone is there," she noted. "And many insurance plans won't cover all the things an autistic child needs, because they view the situation as a developmental disorder, not a disease. So, you have to pay huge expenses out of pocket. Otherwise, you just can't get occupational therapy. You can't get speech therapy. You sometimes can't even get basic blood work at your pediatrician. It's a real struggle.""

Monday, December 01, 2008

Who Hoo!!!!

Almost three months after the position was funded, Jimmy has a one-on-aide!!!! :)