Thursday, April 30, 2009

Sweet relief

I don't know why, but I am still amazed that this is working. Maybe it's because I didn't want to think it would work. I thought the effort would be more then the pay off, but I was wrong. I can just see the relief on Wes' face when he goes. Some days he's going twice! No more stomach distention, no more struggling, and no more constipation! He did have one issue where I found a small streak of blood in his diaper. He had gone earlier that day without a problem. He seemed fine, but was a bit read. While at the playground, he kept grabbing at his rear end like he had a wedgie. I adjusted his pull-up (yes, we're back to those) and sent him off to play again. After 5 more minutes, he came over to me and said "I hurt". He's never said those words to me but I wanted to take him serious. I packed the kids back up and we headed home so I could change Wes. That's when I discovered the blood. I immediately called the pediatrician and the nurse told me to keep an eye out and if it happened again, to bring him in. I know he has to have some irritation left over from the constipation. It could be small hemorrhoids or some left over tears from all the struggling. I just hope my baby is okay.

I've purchased two books and borrowed two from our lending library on potty training. I am determined to have this boy potty trained by the end of summer. My goal, as huge as it sounds, is to have both boys trained by the end of summer. Lord, give me strength.

Friday, April 17, 2009

Things are looking good

I know it's still too early to tell, but things are looking real good. So far, even after the last slip up, he has consistently gone once a day. He did not go on Tuesday because he went late Monday night when he was in bed. Like clockwork, he went the next day. His eliminations still seem to be a bit too hard, but I'm not sure. They could be normal for him. All I know is that he's going and he doesn't seem to be having any gas issues or distention in his belly.
Not sure if this is a coincidence, but his speech has improved slightly. His behavior, however, has not. He hit me the other day and I looked him right in the eye and told him that I would not tolerate hitting and he is to keep his hands to himself. I then turned my back on him. Within 20 seconds he said "I'm sorry. Give me a hug big guy!". I was floored. I gave him a big hug, told him that I loved him and gave him a big kiss. Just today, Casey asked to watch something on t.v. so I turned it on for him. Wesley came up to me and said "I don't want to watch this." Again, floored! He's even seeking me out to ask to go upstairs and play in his room. Like I said, not sure if it's a coincidence or maybe it's something more.
It's still a struggle to find things for him to eat. He's more willing to take bites of foods if there is a reward offered. I'm not thrilled with the idea, but if it gets him to eat a more variety of foods, then I guess it's what we have to do...for now..

Monday, April 13, 2009

Works in progress

It's been an interesting couple of days. Of course, Easter was here so it didn't leave me a whole lot of time to blog. I did keep track of what's been going on with Wes though.

On Saturday, he eliminated twice. Each time was pretty mushy and had a strong odor. On Sunday, he eliminated twice again and this time it was more formed, but still soft. He had had no milk since Thursday. During the chaos of Easter, pizza was ordered. We've given Wes pizza and scraped off the cheese, sauce and any toppings. He seems to be fine as long as there is no dairy in the pizza. Well the pizza that was ordered yesterday contained milk ( I didn't look it up and he was so hungry). So far, he's eliminated and it looked similar to yesterday except maybe slightly more formed. Easily passable though. We'll have to wait and see what the pizza does to him.

His behavior is still very defiant. I talked with the autism teacher on Friday and she seems to think that he's going through the two year old stage that he never went through. He's more aware of choices and his likes and dislikes. It's a good thing, but I still want him to understand that his behavior is not okay and that he needs to use his words to make his choices known instead of tantrums.

In the meantime, we're hanging in there and waiting for vacation next week.

Thursday, April 9, 2009

Accidents Happen

Wes is in the middle of a constipation cycle. He was given goldfish crackers on Monday and accidentally given cheese on Tuesday. He still isn't eating well on the new foods. I did get him to take a whole EO-28 Splash yesterday so that's good. I took a trip to a natural market in another city and found some cereal bars that are very similar to Nutri-Grain bars that he loved. These are much healthier though. I also found some vegan fake cheddar cheese crackers that I'm hoping to substitute for the goldfish that he's addicted to.

I've been giving him Miralax to help move him along, but we're on day 4 now. I'm dreading when he finally does go because I know it's going to be painful to pass. Yesterday, he was having some gassy cramping. I could tell because his face would scrunch up and then he'd run, hide and sit in the catchers stance until it passed. I feel so bad for him. I wish I could figure this out.

So today, we start fresh. Absolutely no dairy and hopefully that will work. I'm considering starting him on Super Nu-Thera from Kirkman's labs but worried about him getting too much. Maybe we should stop the EO-28 Splash because that's actually a meal substitute. Any advice on that front would be helpful.

Yesterday, Wes had a follow up appointment with the Genetics counselor and he noticed these pimple like things on his chest and his neck. He thought they were something called Molluscum Contagiosum. So off to the pediatrician to double check and sure enough, that's what he has. What else can this child possibly go through! If you've never heard of it, I highly suggest you read it because it could happen to your child.

Tuesday, April 7, 2009

The ups and downs

It's been 3 full days of no dairy for Wesley. He's on day two of no bowel movement so I think I might give him some Miralax. Not sure what's going on.

We had his IEP review and his Summer Program meeting yesterday. We talked a lot about his behavior lately. He has become very stubborn and stuck. He doesn't want to do what he's told at school and at home. He fights us on nearly everything. I'm not sure what's causing this. Could it be the milk, or maybe it's watching Casey's behavior. Casey is certainly in the terrible twos with gusto. Wes has been watching this behavior and even imitating some things Casey is doing. They have been bickering like brothers do but moreso lately. Wes has even gotten very physical with Casey. I'm not concerned because Casey can certainly hold his own. He doesn't hurt Casey, but makes it known that he's getting on his nerves.

We'll keep on keepin on.

Advancements in Technology

Microsoft funds mobile-phone software for autistic children


With financial and technical support from Microsoft, university researchers are developing software for mobile phones that uses pictures to help autistic children communicate. The software, available for download under an open-source license, lets kids form visual sentences by touching the phone's screen to select pictures and move them around.
The program is being developed by Gondy Leroy of Claremont Graduate University and Gianluca De Leo of Old Dominion University , with funding from Microsoft's External Research Group. It takes advantage of the established Picture Exchange Communication System, which is more commonly used with laminated paper cards.
Microsoft is publicizing the application in conjunction with World Autism Awareness Day. But people with iPhones or BlackBerries are out of luck, for now: The application works only on Windows Mobile devices.

Sunday, April 5, 2009

Anything's possible

Check out this story in Yahoo News tonight. I am impressed. Another extraordinary kid (and amazing parents) that gives me hope.

Enjoy.

The start of something new

We have started the dairy free diet slowly. I've started eliminating most of the milk products he eats like milk, goldfish crackers (which he lives on) and cheeses. My trip to Trader Joes was helpful, but I felt more confused then before. What I needed was to figure out what exactly Wesley eats daily and then try to find alternatives (whether it be pre-made or homemade) and start with those. I did find some items that will be replacing what he eats now. I also found an alternative to the goldfish crackers for school. They aren't crackers, but they are cookies made without milk. Those should do and he likes them. All I need now is to find or make a bread that has no milk.

Now on to the behavior. I'm not sure what is going on with him. We really are only 2-3 days into decreasing his intake of milk (not 100%) and his behavior has taken a turn for the worse. It's been almost 2 year since he's had a tantrum like he's had the last two days. Screaming, carrying on, going limp, refusing to do what we ask. Our usual ways around this aren't working either. Could he really be going through with drawls on the milk products we've taken away so far? These tantrums have taking us by surprise because we haven't had to deal with them in so long. He's usually pretty easy going when we lay out what we're going to do ahead of time.

He's also starting to use scripted phrases (echolalia) much more then he used to. He repeats the same phrase over and over again. More today then yesterday. Maybe it's his way of coping from the tantrum he just had or maybe something more.

Yesterday, he had a huge bowel movement that exploded out of his diaper. This hasn't happened in a long time either. It had a very foul smell and was very loose. It took many wipes to clean up, but I'm sure he felt better. He hadn't gone again since Wednesday afternoon and that was very large and well formed. Again, not sure what to make of it, but something I'll be watching.

I'll be documenting his progress daily on here. Some might not be pleasant to read (like his bowel movements) but I need to keep track and what better place then here so I can get some feedback from other parents!

Thursday, April 2, 2009

Got milk? Nope

Wes had another follow-up with his gastroenterologist on Tuesday to discuss any changes since he put him on L-Carnitine for his constipation. At first, it was working okay. He seemed to be more regular and having an easier time going. The the smell of fish began to overpower him. I started calling him Tuna because everything about him smelled of fish. Come to find out, the dose needed to be lowered. He would go just fine for about 4 days or so, and then have 4 days of constipation followed by a movement that was just too big for his tiny body.

After talking with the doctor, it was time to try a milk free diet. He tested negative for the milk allergy but we all know that those aren't acurate. He only drinks one cup of milk a day and not much else dairy wise except those damn Goldfish Crackers! The boy can live off of these. The school uses them as reinforcers when needed and of course, he asks for them for snack. That's going to be the hardest thing to break. The other is the Pediasure. It's a gluten free food, but not a milk free food. It is lactose free. So what do we do now with the nutrician he isn't getting from food. Problem solved apparently. We're going to try switching him to EO 28 Splash. It is milk free and gluten free. The problem is, it's sort of like a juice and Wes doesn't do juice. It is milky looking, but has no milk in it. It doesn't smell that great, but the doctor insists it tastes better then it smells. I'll take his word for it. So far, he isn't liking it too much, but time will tell.

My friend and I are taking a fieldtrip to Trader Joes this weekend to do some shopping. I'm not sure which alternate milk I'm going to try. Either Rice, Almond, or Hemp milk. It will definately need to be a good flavor like chocolate or vanilla for him to take to it. Hopefully, I can find an equivilant goldfish cracker that he'll take to as well. If the milk free diet works, then we try the gluten free too.

Let's hope this works for the little guy. I hate to see him in discomfort when he hasn't gone for days.