We're home...but tired

We got up at 4 am this morning to take Tycen to Ann Arbor for his 7:30 surgery, so we're completely whipped. I meant to update the blog while he was in surgery, but it went so fast, I didn't really have time. Everything went as well as it could have and Tycen is now resting at home on my bed watching TV.

Dr. Caird placed the plate over his growth plate to slow the growth in his longer leg. Hopefully, the right leg will start catching up soon. Next, we're going to see a neurosurgeon to see if his tumor should be removed to help him walk better. The poor kid's life is just surgery after surgery.

Tycen is having surgery tomorrow

We decided last week to go ahead with another surgery for Tycen. His surgeon will be placing a plate over the growth plate of his tibia to slow its growth. We are hoping this keeps us from having to do the much more invasive surgery and healing process he had last time at some point in the future. She reminded me that there was no guarantee that we wouldn't have to repeat the last set of surgeries and the tibia stretching process, but this should help.

I am always apprehensive when Tycen goes in for surgery. He handles anesthesia well, but I still worry about him being under. I am bringing my manuscript to work on while he is in surgery, hopefully that will help me take my mind off of it, but usually I just pace the waiting room the entire time.

He may have to stay in the hospital overnight, and is actually hoping he does. He loved the activity room and says he misses the nurses. Eric wants him to come home the same day. I don't know, I like having the nurses there to help us deal with any pain he has. I would rather he be under the care of professionals for a short while. But, we have to pick Rome and Tan up from Eric's parents house if Tycen stays overnight, so it would be me staying in the hospital while Eric comes home with the other two. Neither option is ideal.

I will update this blog when he goes into surgery and is out of surgery from my Blackberry. I love technology.

Don't forget about autism awareness month

Remember that 1 in 110 are affected by autism this month and think of them all.

Feeling a little down

I've been talking to my friends a lot about this lately, but Easter has got me a little down. My mom has a huge Easter egg hunt for all her grandkids along with a meal. The kids always have so much fun. Roman will have to miss out on it.

I'm pretty sure that he might not even get what's going on, for one thing. He'd most likely just scream when I try to direct him to an egg to pick it up. Then, there's what's in the eggs. I can't demand that my mom fill all the eggs with gluten and casein free treats. That's really limiting and not fair to the other kids. It's such a free for all with 17 grandkids that his individual eggs could be marked either. I thought about switching out his candy with GFCF treats like jelly beans, but he's so into immediate reward, it wouldn't work. If I took something away from him to replace it, he would freak out.

Then, there's the actual Easter meal. Of course, it won't be GFCF. I couldn't even imagine asking everyone to eat like Roman, that's not fair. But there are lots of kids and I can't possibly keep Roman from snagging something off their plates all by myself, or even with Eric's help. Kids take their meals to go. There's likely to be food in the strangest of places, especially the candy they get from their eggs.

So Roman is staying home with Eric while I take the other two. We don't want them to miss out either. I feel really bad separating our family like that on the holiday, but what else can we do?

This predicament brings up a greater issue. I am afraid to take Roman anywhere. Some of it is because of his dietary restrictions. Off limits foods are everywhere and Roman's hands work so fast, he can snatch something and have it down his gullet before I could make even the beginning of a move to stop him. But it's more than that. Roman freaks out in unfamiliar places. He'll usually throw himself on the floor and cry. Once he calms down, he just lays on the floor the whole time. I feel so bad for the guy.

And then, there are other kids. Sometimes, I can't stand being around other kids Roman's age. This is my problem, and I need to get over it, but I just can't, not yet. I cringe when another two and a half year old starts telling a story with REAL WORDS. I want to cry when I see other kids Roman's age playing together and watch him off in a corner, staring off into space. I feel horrible about it, but I just can't bring myself to be around other two to three year olds unless I have to.

I have read other parents' stories of feeling this way, so I know it's normal, but it doesn't make it any easier.

Progress!

I often have people ask me how Roman is coming along. Obviously, the goal is a big enough vocabulary to communicate his wants and needs. He really wants to talk, but you can tell somehow, between his brain and his mouth, words get lost. So, his teachers have been working with us on alternative communication.

He's been using a PECS (picture exchange communication system) book lately. There are pictures of things he likes to do, like watch TV, play "I'm gonna get you" (chasing him down the hall to tickle him), and pictures of his favorite toys. There's also pictures of his favorite foods like bananas, apples, and grapes. He's been doing so well with it and we're all impressed with his level of communication with the book.

He has other ways to communicate as well. Recently, we've taught him to grab the hand of someone he wants to help him with something. For example, if I put something out of his reach, like a snack, the goal is to get him to lead me to it to tell me to get it down for him. He learned this after being shown one time! That's amazing!

Words are still few and far between. He likes to say "I did it!" when he turns on a light switch. It's not every time, but it's so exciting when he does it. Of course, he always "talks" about his dad. It's mostly babbling and the only word I can make out is "Dad". Roman misses him so much during the day. He's also still talking about the dogs and I'm trying to get him to say "cat" now since he really loves all the animals.

So, that's my Roman update. I know that I write a lot about the medical and dietary interventions, but I don't get around to bragging about my boy nearly enough.

Go State!!!

Usually when I try to dress the kids in green and white, I get heckled by my Hoosier-lovin' husband, bit I get a break for the final four. YES FINAL FOUR!!!
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This month in pictures

I just figured out how to post pictures from my phone, so I thought I'd share.

Sent from my Verizon Wireless BlackBerry

Three kids, three posts today

I'm on a roll. Three new posts to my blog in one day!

I couldn't let today go by without making mention that Tanis has a milestone today. We're going to get her kindergarten shots today. She'll be five next month! My little girl is growing up and her wings are about to sprout. Next school year, she's going to fly away from me every single day. I don't know if I can handle that.

I need my Tan to cuddle with. I need her "I love you"s thirty times a day. I need her hugs. What am I going to do without all of that?

Wishing money grew on trees

Eric and I have been talking it over. We don't think we're going to go the DAN! route for Roman, at least not yet. We've already implemented the GFCF diet and the fish oil supplements. He's making so much progress as is with his schooling, that we can't see it getting any better any faster. I'm sure we'll reach a standstill at some point, and then we'll look at the biomedical treatments.

Money is a huge factor. Eric is the sole breadwinner and he's a public school teacher. Feeding, clothing and sheltering a family of five on that kind of salary is difficult as is. We just can't afford the treatments that the doctor will want to implement. A friend of mine suggested we look into SSI, but I don't know if I would call Roman "profoundly disabled" although I am told that autism does fit into that category. It would be nice to have some "extra" money to be able to afford treatments and a private speech therapist. And then there's the extra grocery cost of keeping Roman on the diet. It's getting expensive!

So, maybe I will look into SSI. I'm not even sure that we qualify. It seems that we're always just above the cutoff for any kind of financial help. It's hard to ask for the help, too. We should be able to provide everything our children need ourselves. But there comes a point that we just can't. It's not that Roman doesn't already get a lot of help, I just think he could use a little more and I wish we could pay for it.

Tycen and surgery

Tycen has an upcoming appointment with Dr. Caird. She's supposed to decide if another surgery is in the near future. It's an imminent thing, honestly. His lower leg, specifically his tibia, keeps growing faster than the other side. Almost two years ago, he had a surgery to implant a device that stretched his shorter tibia to the length of the longer one. It was so painful for him. Sometimes I cried because I just couldn't handle what he was going through. Tycen, on the other hand, never shed a tear. He whined every now and then, but he never cried. The process of stretching and healing took about nine months.

We're not necessarily back to square one, but the difference in his legs is visibly noticeable again. It's affecting his walk. Something must be done. Dr. Caird wants to put a metal plate on top of the growth plate of the longer tibia to slow down the fast growth. While it's less invasive than the last surgery (or surgeries, the process took multiple surgeries, four, I think), which included breaking his leg, letting it heal just a little and stretching it every day by the use of an external fixator for months, I still have a stomach turning queasiness about it.

Why do I have to put my boy through all of this? I'm not religious, but I am a believer in a higher being. At first, I was mad at God. Why would he put such a gentle and sweet boy through so much? I had no answer. I lost what little faith I had for awhile. Then, I blamed myself. It was probably my defective egg with a mutated gene that gave him NF anyway. I was sure of it. Then I remembered. It wasn't about the hand you were dealt, it was how you played it that mattered.

So, we're waiting to see what card is turned up this time. My gut tells me it's more surgery for Ty. I know he'll play it with the same strength as he always has. I stand in awe of that kid. MY kid. He does really handle it so much better than I ever could.