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.

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.

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.

Diet starts today

I've spent the past week researching information about Ben's food allergies and trying to learn what to prepare and how to prepare it. He has not had any wheat, soy, eggs, or peanuts since his tests came back. Today, however, marks the first day for my one month trial to follow his diet as well.

I haven't even had breakfast yet, and already I've had to give up something... my regular coffee creamer. It contains soy. Dagnabit.

I believe that following Ben's diet is going to force me to learn to cook the recipes and become more personally aware of these food ingredients. No one likes bread more than I do...so I know giving up my Bread Company fix will force me to find alternatives that Ben can enjoy as well.

Ben's new allergy results have been somewhat hard for me to accept. Caring for Ben was already WAY more intensive than I'd like...but the added responsibility of cooking an entirely new way has felt really daunting to me....not to mention the worry of him encountering something dangerous and having a bad reaction.

For now, I guess the best thing to do is have another cup of strong black coffee...no cream, thanks.

Another puzzle to piece together

So...On Friday afternoon at 5pm, Ben's pulmonologist called with his allergy test results. The doctor started out by telling me that Ben is one of the most allergic patients he has ever seen. As it turns out, Ben is dangerously allergic to peanuts, eggs, wheat, and soy. He is also highly allergic to cats, dogs, tree pollen, grasses, dust mites, and weeds. He ALSO has some sensitivity to milk, corn, sesame, and shrimp. Yep. That sounds pretty bad to me.

OK. So, I now have to carry an epi-pen everywhere I go with Ben. The doctor advised that we MUST NOT allow Ben to eat peanuts, eggs, wheat, or soy... or he may go into anaphylactic shock. Since pretty much everything in our house contains one or more of those ingredients, I'm now starting the journey to learn a new way of cooking and eating. I've ordered the allergen-free whole foods cook books. I've thrown away all the peanut products. I've stocked up on oat flour. Ready. Set. Here I go.

Over the next month, my blogging will be dedicated to my task of learning this new diet, and trying to follow it right along with Ben. In reality, eliminating processed foods and cooking with only natural and organic ingredients will make us all healthier.... but oh....I already miss my peanut butter.

I once had a chiropractor convince me that my whole life would improve if I would just give up wheat...so I did...for four days. Now, I'm going to challenge myself to follow Ben's diet plan very strictly for the whole month of August. I believe this will help me learn about the foods and really try to learn the recipes, since I'll have to eat them too. I'm going to share it all here... the ups, the downs, and the painful cravings. If Ben can do it, then so can I. At least for one month, right??

No Angel-man here

Well, Ben's latest and greatest test results are in. The genetic testing has ruled-out Angelman Syndrome. Good news, I suppose. This is one more genetic disorder that Ben has avoided. He continues to stump the doctors. Next stop will be a pediatric geneticist.

Ben's swallow study showed us that he does aspirate liquid and food into his lungs while eating and drinking. We have some new steps to take to avoid this, and so far so good...it's been about a week. With a little help from Ben's nutritionist, and my new handy-dandy food grinder, I'm hoping to expand his diet and help him put on a little weight and build some muscle.

This will be a busy week for Ben. He will be seeing his eye surgeon tomorrow morning, to determine if he'll need a second eye surgery. Tomorrow afternoon, he'll have a meeting with the Early Intervention team to establish his goals for the next six months. (I'm pretty sure we're adding two new therapists to the team - water therapy and speech therapy.) Next, on Wednesday, he will see a new pediatric pulmonologist to check his lungs for any damage from the aspiration, the bouts of pneumonia, and all the interventions he received in the NICU. Then, Thursday and Friday are PT and OT sessions. Yes, there are a lot of people for Ben to charm this week.

In addition to all of his appointments, he is currently on a round of antibiotics, oral steroids, and inhaled steroids to fight off a respiratory infection that has made it's rounds in our family. Unfortunately for Ben, a virus that causes a little cold for most of us can land him in the hospital.

All the medical stuff aside, Ben's personality continues to grow and shine through more and more each day. He's babbling a lot more. He's trying SO hard to crawl. He is in general just the sweetest and happiest kid you could ever ask for. I find myself so grateful today to have two such amazing kids as Sarah and Ben.

The other Ben

I've been thinking a lot lately about my Great Aunt Bennie. We named baby Ben in honor of her. She died almost 10 years ago, though it seems like only yesterday. Now that I have my own little Bennie in the house, it's almost impossible not to think of her on a daily basis.

Aunt Ben was one of the most important and influencial people in my life. I suppose she sort of filled the role of a third grandmother to me... but she was truly more of a best girlfriend, in spite of the sixty or so years difference in our age.

I admired Aunt Ben for so many reasons. To start, she went to college when it wasn't common for a woman to do so, and she became a teacher - a special education teacher. She was married for over 70 years to my Great Uncle Govie. She was smart, kind, brave, faithful, loving, quick-witted, and funny. Throughout my highschool years, she and I would have long phone conversations, and if I was struggling with something in school - be it social or academic - she was certain to have a helpful answer.

Aunt Ben had only one child, a little boy named Paul. He died suddenly when he was 12 years old. She spoke of him rarely. Now being a mother myself, I can't imagine the sadness that must have always remained with her. When things with Ben get hard, I can't help but wish she were here to talk to now...her years of experience, wisdom, and love to share with me.

Knowing the dedication that Aunt Ben had for special needs children, it seems so ironic to me that her namesake is himself a special needs child. It also feels ironic that Ben is, in his own way, already a teacher just as Aunt Ben once was. While caring for baby Ben, he has taught me patience, courage, faith, and determination. He has taught me that smiles can be found when I least expect them. Joy can be found in the smallest victories. Hope isn't just a desperate wish from a sad heart, but instead it is a conscious decision to remain strong and remain open to the possibility for success and unexpected triumph.

Looking at both my children, I feel Aunt Ben's presence. When I think of her, I can imagine her cheering us on... offering supportive words... being in awe of Sarah, and being Ben's biggest fan. I'm so proud to have named my special boy after her, and I know that in spirit, she is quite proud as well. What a blessing for me to have the honor of knowing them both.