Monday, August 31, 2009

In the thick of it.

Here we are starting another week. Trying to find the energy to cope. The main task for this week is to determine a safe and allergen-free thickener for Ben's liquids. It's a long story...but so far we have eliminated 5 options, and will have to experiment with a 6th. Ugh.

Thursday, August 27, 2009

Haven't stopped blogging...

I haven't stopped blogging, I've just been MIA for awhile. August has been a VERY busy month for our family. All in all, Ben is doing GREAT. His allergist has advised us to avoid all nuts and eggs, and so far, so good.

Ben's strength is increasing. His weight is increasing. His babbling is increasing. Yeah, Ben!

Last week I attended a CEU for my license, which was the use of Zen meditation in treating anxiety disorders. It was a wonderful class, and I've been incorporating the techniques in my own "parental anxiety". I'm planning to pick back up on the regular blogging this week, since we will be finished with our summer travels, and little miss Sarah will be back in school.

Tuesday, August 4, 2009

The rest of the day...

Well, Ben kept his food down for the rest of the day, though it seems he has developed a cough. Something to keep an eye on, as usual.

He will be seeing his allergist on Thursday, and I'm excited to get some additional direction on all of the food allergies.

Today, he saw his speech therapist for the first session. She commented on how great Ben is doing. She was happy to see that he closes his lips around a spoon when he eats. In relation to some of her other patients, she remarked that Ben is really strong and has a lot going for him. I cheered with him that someone actually called him "strong". She gave us a few new things to work on now... in between the thousand things we were already working on. Overall, though, I think the speech therapy will be fun. The real goal of therapy at this point is to strengthen his throat, tongue, and mouth so that he can stop aspirating and begin to eat more food.

Speaking of food... following Ben's diet is PAINFUL for me so far. I'm trying, but really I'm only averaging two out of three meals a day that have been free of all of the "forbidden four" (wheat,eggs,soy,peanuts). I need some free time to really cook some meals ahead. Considering I've eaten peanut butter on wheat toast for breakfast most days for the past few years, it's a big change to do all at once. The brown rice crackers are not too bad... but really not too good, either!

The dry spell has ended

Darn. After two comfortable weeks, Benner threw up his whole bottle this morning. Is it a fluke or the beginning of another round of wet yucky days? Guess only time will tell.

Monday, August 3, 2009

Allergy diet - Day 3

It's been three days for me following Ben's "allergen free" diet. I have slipped and had a couple of forbidden foods myself, but mostly I've been trying to make the right substitutions. On the first day of the diet, I attended a party where I was so proud of myself for finding foods with the right ingredients for dinner. Later, however, I was too weak to decline the homemade orange/pineapple cake - made with wheat flour and eggs, of course. I've never been a smoker, but I imagine that quitting smoking could not be worse than giving up wheat in my diet.

I've absolutely kept Ben free of the trouble foods. Tomorrow, I'm making a trip to the health food store to get the ingredients to do some of the baked sweet treats in my new cookbooks. I wonder how delicious barley flour and egg-substitute will taste...

As for Ben, he has been enjoying his fresh cooked meals, and he is doing really well. Today he looked stronger than I've ever seen him. He was actually scooting himself forward on his tummy, instead of rolling to get to his toys. The biggest news -it has been over two weeks now since he has thrown up at all!!! Way to go, Ben!

Since Ben will grow up on this diet from such an early age, I know he'll never miss these foods he's not allowed to eat. For me, though, I've had a bit of sadness thinking of some of the things he'll never know... like my mom's homemade custard pie... or her Thanksgiving dressing. I actually got a little tearful thinking that Ben could never enjoy these foods... but then it dawned on me that Sarah is allowed to eat anything she wants and she won't touch either of those things! So, instead of feeling sad, I suppose my energy is much better spent learning to cook the allergen free organic buckwheat cherry pancakes in my new cookbook. Yum.

Saturday, August 1, 2009

Just one example

One example of the crazy routine I have to follow for Benner.

Here is what feeding time looks like for Ben:
1. He should be bounced on a balance ball for about 5 minutes prior to feeding to help "turn on" his muscle tone.
2. He should be given some stimulation for his mouth and cheeks. I am supposed to use an electric toothbrush to vibrate along his cheeks and under his chin, and a little on his teeth and gums as well.
3. He should be given something cold. Before he is allowed to eat his true meal, he has to be fed at least a quarter cup of something very cold to help turn on his sensory perceptions. It's also helpful to use spoons that have been left in the freezer.
4. Because he is now restricted from eating solids that he can feed himself, I must give him a toy or something to occupy his hands to reduce his frustration of not feeding himself. (He is too jerky to self-feed the purees).
5. Now he is finally able to eat something - something that I have pre-cooked and hand-ground into a puree - and that does not contain any wheat, eggs, soy, or peanuts.
6. I'm supposed to carefully watch for any signs of aspiration... eye watering, runny nose... if there is any coughing I must stop feeding him that particular food completely for that session.
7. We must be certain that he remains upright now for at least 30 minutes so that he's less likely to experience any reflux.

I'm not complaining... but when Sarah was Ben's age, I could hand her a grilled cheese sandwich and a glass of milk.

Knowing what I know about kids like Ben, I'm mostly just thankful that he is able to eat at all, and that he's not hooked up to a feeding tube at this point. I will keep up with the wild routines as long as I have to. Sometimes when I think of all that's involved with Ben's daily routines, I want to hide my head in the sand... so I have to just take it minute by minute... and try to stay present... and try not to miss all the joy that comes along with all this craziness.