Bryce's Latest Doctor Visits.

*warning*-Life is not sunshine and roses and neither is this blog entry.

Bryce has had diarrhea since birth. It is hugely abnormal and has been difficult to diagnose. When he was a nursing baby, "loose stool" is attributed to nursing, as breastmilk has a slight laxative effect on babies. Then he had worse diarrhea with the c.diff last year--prior to the c.diff diagnosis, this diarrhea was written off as "Toddler Diarrhea" and attributed to him not chewing his pureed foods thoroughly enough. (insert sarcasm here--not "chewing" pureed foods? Seriously?)

During the course of the c.diff testing, something called "reducing substances" were found in his stool. This was ignored due to the greater problem of c.diff. The c.diff was treated, defeated, but the chronic diarrhea remained.

At his 2 year well child visit, the chronic diarrhea was chalked up to "Toddler Diarrhea" again-against my better judgement. I asked for more stool tests to be run. I was promised that at 30 mos, if it was still a problem, they order more tests.

At 27mos, the pediatric GI tells me that I should let Bryce starve so he would learn to eat table food instead of purees. That was why he had diarrhea-the pureed food. I was also told to stop giving him his bottles of soy. The Dr told me he had plenty in reserve and was just manipulating us. Needless to say, we did neither.

30 month well child visit, the pediatrican orders the promised stool tests. They come back positive for reducing substances-again. He has gained weight and grown and is pretty happy. Pediatrician orders a trip to the Pedi GI.

31mos-visit to the Pediatric GI. Diarrhea continues.He has lost 2lbs 3 oz since his 30 month well-child visit. Another (different) stool test is ordered, and I sign consent forms for another endoscopy. Dr is concerned about the weight loss, his gagging, and the overall problem of diarrhea. Dr suspects EE again, even though his last endoscopy (jan 2009) was clean.

Yesterday was the bi-annual visit to the Pediatric Allergist--Allergist reports that he has read the notes from the GI doc and is in agreement. He is very concerned about Bryce's weight and instructs me to increase his bottles back up to 24 oz and to schedule them into his day. All of his known allergens have increased in number (meaning they are potentially growing "stronger" or "more allergic") but his dairy numbers have decreased enough that we can talk about retesting it at age 3 and maybe food challenging him at age 4. His egg is the highest level he's ever seen.

What does all of this mean? I don't know. We have to get this final stool sample run (looking for pancreatic amylase) and the Pedi GI assumes it will come back negative and then we'll scope. The GI doctor is also thinking that while Bryce has had diarrhea all of his life, it might currently be caused by EE and not anything else. The EE diagnosis is particularly devastating as the treatment includes removal of all foods from his diet, drinking an elemental formula, then slowly adding in foods over the course of years. We're thankful we have U of M Mott Children's Hospital in our backyard and we'll just keep on raising Bryce as though he were no different from the other two. That's really all we are capable of at this point.

Calendar Rebellion!

The lack of posts is indicative of the crazy schedule we keep during September. We've been so busy managing 3 kids at 3 schools plus their activities and our activities that there's been no downtime to blog.

The boys have settled into school routines, including earlier bedtimes. Brendan has learned the hard way that proper time management is key to getting his homework done on time. After putting off a large project for too long, he ended up with a very reduced grade, privilege removal at home and learning a (hopefully) life long lesson about using time wisely. He worked on his Boy Scout Troop's garage-raising over the past 2 weekends and earned the historic Carpentry badge.

Brett is enjoying 2nd grade and hanging with his buddies. He successfully lobbied his teacher so I won't have to help him with my LEAST favorite homework assignment at his school--the dreaded Writer's Notebook. Every fall, we have to cover this thing with pictures from magazines, photographs, ideas, etc that the child uses as writing prompts. Great idea, right? For a 1st grader, this is really too difficult to do. My kids aren't allowed to access my photographs, and the layout of all the pieces is tricky, as is putting the contact paper cover on top. I helped Brendan with them for 4 years and accepted the fact that I would do them for 4 years with Brett. Except he told his teacher how much I hate doing them and she said they could use last year's if there was enough paper left. BRAVO!!! Thank you, Brett!

Bryce has been exited out of OT because he meets or exceeds the goals for a child his age. His fine/gross motor are closer to 48mos as was his cognitive function. His potty goals are a troublesome area as he's far behind his age mates, scoring at 15mos for that. So he'll still receive speech at home and attend school one day per week.

Brad has been busy coaching Brett's soccer, being on Church Council and preparing to step up as Cubmaster. He's also a merit badge instructor in Brendan's troop. That's in his "spare" time. I've been busy setting up all the math clubs at Brett's school (5 of them!) and assisting with 2 math clubs at Brendan's school, plus running Brett's den, dealing with Bryce's Dr appointments and squeezing in handbells. Sheesh.

We've had a friend from college, N, and her daughter, S, move in with us temporarily. She landed a great job teaching elementary music near us and had less than 2 weeks to sell her home 2 hours away AND find a place to live here AND move. Can you imagine how stressful that must be? So, they are staying with us so she can settle into her job and find a great place to live and not kill herself doing so. It's nice having a 3rd adult here and S is fun for both Brett and Bryce to play with. S is a 1st grader and is so adorable. :) We had some really great folks help us get her settled in by providing a bed, bedding dresser, bookcase and some toys. Yay!

Open houses, parent nights, school picnics, curriculum nights are all behind us. We (and our calendar) are looking forward to the ever so slight break that October brings. Happy Fall!

First Day Of School, 2010.

7:10AM on the first day of school. Obligatory "brothers" photo.

Brendan has been adjusting to 7th grade & middle school. His bus never arrive for pick up on the 1st day, so Brad had to drive him. The first 2 days were filled with fire drills, tornado drills, mastering his locker, navigating the hallways and a grass skirt. The grass skirt was part of some sort of team building assembly. He has had a bit of homework, has been late to 2 classes, "But only like 1 minute late, Mom!", and has been assigned his first novel in Language Arts-1984. He has said,"I'm actually going to learn something in middle school!" and apparently has forgotten the numerous things he learned while in elementary school.

Brett  needed no adjusting to 2nd grade, other than getting to bed earlier for his 6:40AM wake up. He's confident and mature and was so ready to be with the buddies he missed over the summer. He's had some busing snafu's including a ride home of nearly 1 hr and 20 minutes on the 2nd day of school and getting on the wrong transfer bus and thusly, ending up at the wrong school. He told me,"I saw the note you wrote, Mom, about which bus to take, but I threw the note into the recycling bin." Hmm. He'll never make that mistake again. He's sitting at a table of 2nd grade boys (he's in a 1/2 split, looped with last year's teacher) and I imagine before long his teacher will split up those 2nd grade boys!

Bryce also started school this week. He's in the Early On program through our school district and qualifies based on his speech and feeding delays caused by his food allergies. He attends class with me 1 day per week and an OT and a speech therapist each come to our home 1 hour per week. Bryce spent his first day at school riding a tricycle in the hallway, naming the colors on the rug we sit on in music, and doing puzzles in the fine motor room.  He's the tallest child in class by a good 6 inches.

Behold The Power of Wheat-Free!

Wheat-free "play doh", that is.

What an amazing find, the Crayola Model Magic. Nobody sent me any, nobody is paying me for my opinion--this is just a lucky, amazing find at the store last week. I can't even take credit for finding it, because it was Brendan who plucked it off the shelf and checked the ingredient list (he's very well trained). It has a declarative "WHEAT FREE" statement on the packaging. Name brand Play-Doh contains wheat and is labelled as such.

Seriously? I don't have to make homemade play clay that feels like squishy sand and cannot tolerate humidity levels above 60%? I might make some this winter because play dough made with items found in my kitchen is nice, and the Crayola stuff is pricey (it's about $2 per tub!). Bryce ends up rolling it all together, yieling a dark purple color.

Behold. The power of wheat-free play dough.

Oh, and Crayola? If you're reading this---yes, we'd love a case.

Quotable Kids.

Once again, a gem from Brett. This came upon his return from soccer practice.

Coach Dad: Brett, tell Mom about the corner kicks.

Brett: I can curve it like CRAZY!

Coach Dad: no, that's not exactly it...

Brett: Oh yeah, I can bend it like Beckham!

I think Brett would rather curve it like crazy than bend it like Beckham, I guess.

Don't Think It's About You.

With the except of a celiac parent, a parent with a food allergic child is different from all other parents. We have to know what is in the food or everyday item you're giving to our kid. We can't accept that you "read the label" or that "I've given it to him before, what's the problem?" We have to wonder if you cut a peanut butter sandwich this morning with the knife that you are now cutting watermelon. Trusting others to read a label properly or prevent cross-contamination can be life-threatening.

Some simple things to remember:

First-it's not about you. If I ask to see the package or question where an item was cut, it's not a personal attack. I'm not out to hurt your feelings, I'm searching for information.

Second-You don't know food allergy. Remember those Nike commercials from the 80's with Bo Jackson & Bo Diddley--you know, where Bo Diddley says, "Bo, you don't know diddley?" Yeah. Food allergy is like that, too. You think you know, but you don't know.  Hand over the box/bag/label/package and let me decide if he should eat it. Don't get offended if I don't let him-again, it's not about you.

Third-Gluten free labelling is not the saving grace of food allergy. Sure, labelling laws are much improved. Sure, there are more products on the market today. You don't know food allergy if you think gluten-free is the answer. Many gluten-free foods are significantly cross-contaminated with nuts, or contain nut flours in their ingredient list. Kids with wheat allergy do not have celiac disease. Please don't offer my wheat allergic child a "gluten free" food. It's not about you.

Fourth-Everyday items have food allergens in them. Play-doh is labelled to contain wheat. One must assume all other play clays also contain wheat. The glue on envelopes and stamps can also contain wheat. Some school glues and paints can contain eggs and wheat. Inks can be soy-based, causing problems for a soy-allergic child. If I take the glue or markers away from my child and ask for the package, it's not about you.

Fifth-"No" means "no". If you offer my child something, maybe a Popsicle, and I say "no", don't ask for a reason. Don't ask a second time.  Maybe I know something about that Popsicle that you don't. Maybe I don't want my child to have a Popsicle. It's not about you.

It's about trying to keep my kid alive.