An update...

Hello all! Just an update on our life! Ryan and I just got back from a Caribbean cruise- we had such a wonderful time. It was beautiful! Ben stayed with his Grammy and Grandpa and they had a great time. We really needed the break. :)
Ben has been doing ok... lots going on. Our latest development has been seizures. They are little moments of "tuning out" more or less. A few weeks ago we did an EEG and an MRI and today we saw a pediatric neurologist. We are going to be starting an anti-seizure medication. The seizures are probably not harming him, but they probably are or will be interfering with school and learning. Unfortunately your brain starts developing pathways, and it wants to go back to the same pathways, which could mean more frequent seizures... So, we will give the meds a shot.
We have also been battling ADD/ADHD, which has not been diagnosed yet, but we don't really need a diagnoses to see the problems. :) Focusing, paying attention at school is becoming a major problem. We are trying to tackle this with supplements to try to treat the underlying problems rather than cover them up with medications. So we are giving some new supplements a shot, altho we have yet to see any improvements from this.
The Good news: conversationally we are seeing a huge burst! Lots of little things like "yeah and thanks", rather than our usual scripted "thank you and yes." He is also really starting to talk about things and talk in longer sentences or actual conversations, altho a lot of times it's about his OCD topics like doors, elevators, or our newest obsessions, thermostats and alarms. (great).
Potty training! Yes! It's going well! He is wearing big boy pants now all the time except for night time and nap time (when we get one)...
Well, that's it for now! Hope all of you are well!

Mama, Can you help me make an appointment?

Ummm... yes Ben. What do you need an appointment for? I need to build a house! Ok, I thought, does he really know what he's saying or has he just heard this before? Ben, who builds a house? A fireman!

This was our latest conversation. That's right, you heard it, a conversation. We've been having a lot of those! After weeks, even a month or so of just some really hard times, Ben is finally coming around a little. Last week was the best week we've had in a long time, and we had a great weekend. Lately I've discovered how sleep is the best "drug" for Ben. He's a totally different kid when he gets good sleep (at night and naps). Last weekend we went to Dallas for a short getaway... sorry most of you have probably already heard us rant about this... it was terrible. Ben was major OCD about the elevators, and we had given him cough syrup since he had been sick, and it had an adverse effect on him. He was totally crazy out of control. He would not sleep. We ended up coming home a day earlier (after we had paid for our hotel- it was that bad).

On the other hand, we are excited about starting some new stuff. Since attention (probably ADHD/ADD) seems to be our latest and most pressing problem, we are going to target that with a new supplement called 5HTP, and try melatonin for sleep. Maybe he is not sleeping as well as we think he is?? Hopefully these will help with attention issues.

The GI medication is working! We have seen great improvement in the poop department and Ben's buddha belly has started to shrink! Yay!

Ben can now write his name darn-near perfectly. Way to go Ben! He can also write other small words if we spell them for him. He is also learning how to read small words and recognize them- that's a 1st grade skill! Yay! Now if we could just get him to play with other kids on the playground.... :)

Until next time...

The results are in...

Hi all... well.... we got the results back from Ben's Austin procedure- the pill camera, endoscopy, colonoscopy, and biopsy. The biopsy showed some inflammation, somewhat abnormal, but nothing major. The pill camera, however, showed an entirely different story. It showed evidence of erosions, lesions, and ulcerations. Very small, mind you, like millimeter in size, but certainly there. There was also evidence of early Crohns Disease. This does not mean he will have Crohns disease later, but it is a possibility at this point. For now, he has been diagnosed with "Autistic Enteritis"- a bowel condition common in the autistic population. SO the treatment now is medication. He started on Pentasa, which he has been taking for a week now. Thank GOD we haven't seen any major side effects, so he seems to be tolerating it pretty well. He will take this 3X daily with food indefinately right now. He will also have to be scoped again at the end of 2008.
Fun stuff... We are fighting our insurance company on denial of payment for the pill camera portion- they still consider it experimental. Well... if we wouldn't have done this, we wouldn't have seen the source of Ben's problems! The pill camera can go in places that the scopes cannot. Yet another frustrating thing in the day in the life of the world of autism! Just think of those families that need the pill camera but cannot afford it and are not finding the source of their child's problem- and their child cannot tell them what hurts or what's bothering them. For that matter, insurance does not cover about 75% of Ben's treatments. I recently heard about something called Nick's Law here in OK, where they are trying to get a bill passed mandating insurance start covering autism related expenses. I mean it's in everyone's best interest, if we can't start helping these kids NOW, taxpayers will be paying for these autistic adults for the rest of their lives. hmmm....
OK, I'll get off my soap box now.

The good news is that we've taken Ben off of his Vitamin B12 injections because we've felt like it's been hindering his potty training. Every time he pulls his pants down he thinks he's getting a shot. The anxiety is traumatizing. SO we decided to stop and see what happened. It's been over a week now and we haven't noticed much difference. YAY!

Happy New Year!

I can't believe it's 2008! What a year 2007 was for us... sad to say, but I'm glad it's over and looking forward to 2008 being a great year for the Staffords! The last few months have been a bit of a blur, between Brandy having foot surgery and Ben having a colonoscopy/endoscopy/pill-camera done in Austin. We have really stacked up the medical bills! :) Most of you know that Ben had the scopes done, to investigate his ongoing tummy problem. He did so great! The facility we went to in Austin was fantastic- Ryan and I actually went into the operating room with him and helped put him under anesthesia- this was by far the worst part and hard for us parents to watch, but he was quickly asleep and the rest was pretty easy. The GI doctor is one of the most well-known in the country in terms of the autism world, so we were in good hands. He inserted a pill camera into Ben's belly, and Ben wore a recording device around his waist that recorded the pill cam for 8 hours. Very cool technology- of course Ryan was loving that! Everything looked great except for one area that had some "bumps"- they call that lymphoid nodular hyperplasia- it's really common in kids with autism- we are awaiting the results of the biopsy and results of the pill camera before determining treatment- probably medication. We are praying that this will clear up his tummy issues and possibly even address some of the autism symptoms as well. O how I pray...
We had a great Christmas- spending time with both families. Ben enjoyed Christmas, I think, it was a little overwhelming at times. He wasn't really that interested in presents, as we expected, but is enjoying them now. Lately we have been dealing with some behavior issues, mainly listening, minding, discipline, just getting his darn attention!!! Sometimes I forget that he's 3 and not 2! We are trying to find someone that can help us with some of these issues- if nothing else- help us with how to deal with him better- he can be a real handful!
It has come to our recent attention that Ben probably has ADHD along with autism. Ahhh... fun stuff. What's weird, is how similar they are. This is my next topic of research.

Now for the good stuff.... Ben has been talking up a storm!! He has been showing us stuff, sometimes even wanting our attention or help, and asking questions. I promise I will NEVER get tired of "What's that, mama?". It's like music to my ears. Yesterday he picked up a new toothbrush in the package on my bathroom counter and said, "This is a new toothbrush. We got it at Wal-Mart!" Yep, Ben, you're right! The other day, he drew a house on his easel, and told me he wanted me to draw "colored christmas lights" on the house. He is also close to writing his name and sounding out words. Now that's pretty cool!

Until next time!

Happy 3rd Birthday Ben!

I can't believe my little Ben turned 3~ it has been an overwhelming year. Ben had a fantastic Birthday party! We had a ton of friends and family gather to celebrate the big day. Here's a picture of Ben getting into the giant moonwalk. The kids had such a fun time! I was so proud of Ben- he participated, played with the other kids, and was a trooper for the whole party!

Ben's school is fantastic. He is doing so well- he's learned the songs and the routine. It's hard-core preschool! They have schedules, circle time, calendar, art, snack, playground, songs, and small group time. I love getting to watch him and see how he does at school. Ben likes to be the weather man. He gets to go to the window and tell the class what the weather is like that day (with a little help of course!). He gets pulled out for speech twice per week. I think the hardest thing to watch is playground time. Ben doesn't play with the other kids, he just does his own thing. This is definately our greatest need at this point- social. Ben's speech was tested and found to be within "typical" age appropriate limits, but the pragmatic/social use of language is delayed- conversation, questions, etc... are what we need to work on. Ben's joint attention has improved dramatically! He addresses us, looks at us, is starting to show us things (yesterday he held up a big french fry and a little french fry and said, "Look mama, this one's a little french fry, and this one's a big french fry- look mama!" He's also starting to ask us questions, like "what's that?" and "do you see that?". My heart melts everytime he does this... you have no idea what a big deal this is.

Many of you have heard us talk about Ben's tummy and some potty problems we've had going on for a couple of months now. This is still a problem, and we will be seeing a GI doctor in Austin to try to address these problems. We've also had some behavior problems develop (screaming) as well as his sleep and diet have been affected, and his self-stimulatory behaviors have increased as well. Our doctor thinks all of this is related to a GI issue, and Ben may have an endoscopy done to try to figure this all out. In the mean time, the behavior has been our main concern. Ben has been having some tantrums (something that is new to us). While some of this is related to the GI issue, some of it is also the "terrible two's"... just a little late! Yesterday we had Ben's well child doctor visit- he is the size of a 4 1/2 year old kid... oh my...

Ben has also transitioned out of Sooner Start, our early intervention program, and into the Public School System. We opted to receive "services only", which means Ben goes to school just to receive speech therapy twice per week. We chose not to put Ben in the "Developmentally Delayed Preschool" at this time. With so much else going on, when would he have time for that?!!

It's Almost School Time!

Hello all-
Well I am finally back up and running again after my back surgery. And ready! Ben is doing absolutely fabulous. He is talking more and more every single day. It is nearly every day that he will say things that make me say, "I didn't know he knew that word". Last night he slipped on the wet tile and said, "It's slick." hmm...

On another note I had an appointment with the doctor in Austin. He is fabulous. He is obviously an expert on autism and had a new book come out in July. His prices are outrageous (I'm embarrased to even tell you how much), and isn't covered by insurance, but I think it's going to be worth it. He is starting Ben on the drug Diflucan to kill any yeast that may be in his body (a test we did revealed he had high yeast levels). We will be finished by the time school starts, which is good because we could see some behaviour issues during die-off.

Ben's school is finalized, he will be going to Leaps Preschool at OU Health Sciences Center. He will get speech therapy there as well. He will go three mornings a week. We are so excited about this opportunity and think Ben will do so well there. There will only be 9 kids in his class, and about 5 teachers/aides. Amazing! He starts in a few weeks.

Can you believe it's almost fall? Can you believe Brandy will be 30 next week? After having back surgery, I am especially feeling old!!! :)

A Little Update

Hello all! It's been a while since I've posted last, so thought I would give you a little update. Benjamin is doing terrific! I think we are seeing some positive changes from the gluten (wheat) free diet. Ben seems more engaging, alert, and responsive. He is becoming so funny! I (Brandy) on the other hand, have been not doing as well. I hurt my back again, this time seriously. It's been a nightmare of a week, it took us 3 doctors and a trip to the ER to finally get an MRI to figure out I have 3 compressed discs, 1 herniated disc, and an annular tear in another disc. All I can say is Yowch. I never dreamed of so much pain... Anyways, I got some fantastic drugs and am hanging in there. I see a neurosurgeon tommorrow and will know a plan of action. Yesterday I got out of bed and Ben told me, "Mama sleep. Go back to room and sleep". You better believe I hoisted myself out of bed and got up! :)

On another note, last week Ben attended a "typical" preschool classroom. He sat in the class with his OT for 2 hours and participated with the other kids. He did fabulous! His OT said he was totally indestinguishable from the other kids. That's exactly what we want! The only issue he had was doing his hand and mouth thing going down the slide. Yay Ben!