Sunday, May 6, 2012

Our Food Allergy Journey

As most anyone who knows me knows by now, Aaron (our 3 year old with Down Syndrome), has Celiac Disease and several months ago was diagnosed with a Soy allergy as well. For the past month or so he has been having problems again (difficulty sleeping, change in his behavior, rash on his face and cheeks and a few other symptoms). After having some blood work done (and waiting four days to find out whether or not he might have leukemia - he doesn't, thank goodness!), we went back to the GI doctor this past week to discuss what could be going on now.

We think we have it narrowed down to two possibilities - a milk protein allergy or a corn allergy. Or both! Yippee. Aaron's diet has to be gluten and soy free and we had been avoiding most dairy because I thought he was lactose intolerant (or I thought that's what the doctor had told me when he was diagnosed with Celiac disease). After talking to the nutritionist on Friday, she said he may actually have a milk protein allergy, so he shouldn't eat anything with any dairy in it at all. So that means anything that has been made with any type of milk. So we are supposed to try that for a few weeks and see if it helps. If it doesn't, then we'll move on to eliminating corn.

However, I feel pretty certain already that it's the corn. It could be both, but Aaron is giving me the signals that it's the corn he can't tolerate anymore. He used to love to eat tortilla chips and Fritos, but now he won't touch them. He did the same thing when he developed the soy allergy. He was drinking soy milk all the time before that but when he started having symptoms, he didn't want to drink his soy milk anymore. He's pretty smart. Even though he can't tell me what's wrong, he knows that he doesn't want those things because they make him feel bad.

So that should be fun. He will be on a gluten free, soy free, dairy free, corn free diet. Try looking at the labels on pretty much anything in your pantry and see if those ingredients aren't in them. It really eliminates almost all packaged or processed foods (which isn't necessarily a bad thing, but it's a challenge with a three year old) and any type of baked goods. Did you know if something contains baking powder, dextrose, glucose, maltodextrin or xantham gum, then it contains corn? Yeah, me neither. So, he can eat meat and fresh fruits and vegetables. Well, most vegetables, but not corn. Or anything containing soy (like mayonnaise, vegetable oil, even Pam has soy in it!) For now, he can still eat potatoes and rice.

I am determined not to let this overwhelm me like the other food allergies have. We have gotten used to them and I know we'll get used to this too. It is frustrating that he isn't even four years old yet and his diet has already been EXTREMELY limited. But in the long run, we'll probably all be better off for it. It's not very likely he will have to worry about the obesity that often goes along with having Down syndrome since he won't be able to eat very much food that would cause that problem. So that's a plus! We'll see. If I get really ambitious, I may try to post some recipes that I make that are gluten, soy, dairy and corn free in case anyone else is interested in such a diet. I'm not making any promises though. :-)

Not the Perfect Mom

Have you ever felt like you just can't catch a break? Like every little thing goes wrong all day long and completely ruins your mood and your attitude? Today has been one of those days for me and it's not even lunch time. Unfortunately, I feel like I have had a lot of those days lately and it just plain sucks.

I want to enjoy my family and my children. I want to be the mom that does fun activities with her kids and keeps a (relatively) clean house and has a good dinner on the table for her family every night. Instead, I feel like the mom who is constantly yelling at her kids and trying to get away from them, almost never provides any fun activities that we can all do together and more often than not feeds her kids lunch meat and cut up fruits and vegetables for dinner while I sit and watch them eat. And don't even get me started on what a wreck the house is all the time. I am exhausted at the end of the day (who am I kidding, I'm exhausted by the middle of the day) and I just can't seem to be the person I want to be.

Today, we got up early to take Daddy to the airport because he had to go to Las Vegas for the week for work. I tried to think of things to do with the kids today to keep them busy so we wouldn't be driving each other crazy. Going anywhere is pretty much out of the question because Aaron doesn't like being confined in his stroller and if he's not in his stroller when we are in public, he will run off and make it impossible to do anything. If he is in his stroller, he screams and cries. So, I am left to think of activities we can do at home. I got him a new water table last week and he hasn't played with it yet, so I thought that would be fun and would probably entertain them for an hour or two.

When we got home from the airport, I filled the table up with water and let Aaron play. The first thing he did was try to climb onto the table like he was getting into the bathtub. It's not a pool, so that didn't work, but it didn't prevent him from trying it about 5 dozen times. When he wasn't trying to get into the table, he found the drain plug and promptly pulled it so all the water drained out. After refilling the table (a couple of times), both boys were playing and getting completely soaked (which is fine - that's kind of the point). But of course every few minutes someone would cry or complain about something. Then a bee showed up and ruined the whole activity since Jacob refused to go anywhere near the table after that. (The bee did not sting anyone, but Jacob was stung by a yellow jacket last year and has been terrified of all bees since then) So that was the end of that activity! It lasted all of about 30 minutes.

So we came inside and watched some Blue's Clues and Phineas and Ferb on Netflix. But the dog also decided to pee on the floor next to me and Aaron stuck his hands in it before I noticed it. Once I cleaned that up and washed Aaron's hands, I noticed he had made a mess with his snack all over the walls, so I had to get out the Mr. Clean Magic Eraser to clean that up and while I was trying to do that, Aaron found his water bottle, came up behind me and started dumping his water on my back. Of course this was hilarious (to him). So now, the dog is outside, the boys are in their rooms and I am trying to convince myself that I can make it through the rest of this day. It's not even noon yet.

So I need some help here. I have all sorts of friends who post on Facebook and on their blogs about how great their kids are and the fun things they do together and how they can't wait for summer vacation so they can spend more time together. How do you do it? (by the way, if that's you, I'm not trying to be mean, I really want to know!) How do you enjoy all that time together without losing your mind? How do you do all of these fun things together and cook dinner and have that perfect family? I have been trying but I can't seem to figure it out, so I need some tips. Are you really as perfect and pulled together as you make it look? People tell me all the time that they don't know how I do what I do and sometimes people even tell me I'm a great mom. I feel like I am trying but I am far from a great mom or at least far from the mom that I want to be.

I'm not writing this because I want a pity party (although I realize that is pretty much what it sounds like) and I am not overwhelmed or feeling depressed. I'm just frustrated with the way things are and I want to make it better but I don't know how. So really, if you have any suggestions or tips on how you manage to get things done and actually enjoy your children, I would love to hear them.

Thursday, May 3, 2012


I like talking about Aaron and his various diagnoses. Not because I like to think about all of his challenges, but because it gives me an opportunity to educate other people about all of these things that they may have never heard of. I have learned so much and done so much research in the past three and a half years and I really enjoy sharing that knowledge with other people. After all, it's the best way to spread awareness, right?

At this point, Aaron has so many diagnoses that it's hard to keep track of them all. I have several notebooks full of medical records and have to keep a file on the computer just so I can keep all of his doctors and therapists straight. At this point (keep in mind, he's only three), he has been diagnosed with Down Syndrome, Celiac Disease, Asthma, Sleep Apnea, a soy allergy, Sensory Processing Disorder, Reflux, Chronic Ear Infections (including three sets of tubes and an adenoid removal) and mild hearing loss. He also sees a cardiologist on a regular basis because he had a hole in his heart (VSD) when he was born. It closed on it's own within the first year of his life but we have continued to see cardiologists on at least a yearly basis for other more minor issues.

However, today we went to the cardiologist for our yearly visit and he said he has no more concerns about Aaron's heart!! Yay!!! He does want us to come back in 3-5 years for one more echocardiogram just to be sure nothing has changed but other than that we are cleared from Cardio!! This might not seem like a big deal to some, but Aaron has a Pediatrician, a Developmental Pediatrician (at the Down Syndrome Clinic in Atlanta), a Pulmonologist, an ENT, an Allergist, a GI doctor, an Orthopedist, an Ophthalmologist, a Pediatric Dentist and a Cardiologist that he sees at least once a year - most of them he sees more frequently than that. And that's not even counting the four therapists he sees every single week! So crossing even one of these specialists off the list is just so wonderful! Obviously I will (and do) take him to whatever appointments he needs but after all we have been through over the past three and a half years, it is amazing to hear a doctor tell me that he is cleared instead of telling me that he has a new, lifelong diagnosis.

Thank you God, for giving us a break today. It has felt like we have had nothing but a string of bad luck lately (and we are still currently trying to figure out his current medical problem, but more on that another time) but today I felt like we got a little relief. And it is oh so sweet. So today we rejoice in being one doctor down. Yippee!

Wednesday, May 2, 2012

Make New Friends But Keep the Old

Last night we had a visit from an old Air Force friend and his new wife as they drove (moved) from Alaska to Texas. We had a wonderful time visiting with Tony and Karen and it made me miss our ABM family terribly. We had such an amazing group of friends when we lived in Oklahoma and we haven't found anything like it since. That's not to say that we haven't found friends in other places, we have and they are wonderful, but this group is special and they will be a part of our lives forever. We have already been spread out all over the world but I hope that we will somehow, someday live close enough together to actually see each other more than once every 3 or 4 years.

I feel like my life gets so crazy that I often don't have time to stay connected to my friends but visiting with Tony and Karen last night reminded me just how important it is to make the effort. They remind me that life isn't as hard as it feels sometimes and that when it does become too much, my friends are there to support me, no matter how far away they live.