He has some sniffles but doesn’t seem to be wheezing or congested and that’s their concern for putting him under. So this next week will be me loco with keeping him healthy.

The next step will be a phone call the day before the procedure to tell us when to be at the hospital - hope for a good time - since we have to travel almost 2 hours to the hospital and we’ll have to be there early no doubt.

I am guessing that will be a very long day.

I talked to James on his lunch hour and typed the words while crying, J had another digestion issue. He woke up ice cold and pale. His temp, 96.4. Got him some milk and covered him in a blanket. Debating to take him to the Dr (call the nurse) because at the same time E had finally dipped below 100 of her 103 temp the night before. I didn’t want to ruin things for Wednesday and was sure if we went - probably would.

I started googling things, to try to figure it out. All I could resonate was how little he ate the prior two days -and how little he drank the day before too. (his pattern when he’s having bad digestion times). James suggested apple juice, but we weren’t sure would he just bring that all back up but as he didn’t get better I gave it to him.

Thankfully in an hour’s time he was back to himself mostly. He still acts odd when he’s in his bad digestion place - and sure enough a little while later he’s gone bathroom and it results in a mess that sends me to tears.

Perhaps I feel helpless as I/we need to keep poisoning our child - which I get but it feels so wrong at the same time. Perhaps it’s because few people seem to ‘get it’ and it’s so difficult to understand even when we read about it. Many offer nothing but the most support humanly possible.

Later in the day - we have the usual joint pain which has seemed to be sloughed off as a symptom by any Dr. I’ve told it to. I don’t know if Celiac is the answer to what is up, but something…. something is 100% not right. I only hope if it isn’t Celiac that we are able to correct it by going wheat free 100% (which is essentially gluten free because well wheat is the biggest offender and as I wrote before there are few items out there when we needed them that were wheat free but not gluten free). Because the thought of more tests and doctors and experimental taking off and on food I’m just not up for today.

In the long run, J will be better off diagnosed. But he’s 2 1/2 and should be being a kid and on the days of his ‘flare ups’ he’s not even close to that.

I joined a group several months back on Facebook - which is where I spend most my free time during the day-yes I’m an addict. The Celiac Handbook. Most the people we’ve talked to seem perplexed by the idea that someone could have both wheat allergy & celaic, in fact the Dr J sees nurse said they’ve never seen a case in all her time working there.

So for anyone interested in what this might mean for J.
What is Celiac?
Celiac Disease is an autoimmune disorder ( an overactive immune response of the body against substances and tissues) of the small intestine.

Celiac Disease is caused by the inflammatory interaction of gliadin and the enzyme tissue transglutaminase. This inflammation flattens the lining of the small intestine and thus impedes your small intestine’s ability to absorb nutrients. The best and likely only way to deal with this disease is a strict gluten-free diet.

What is gluten?
They exist in the grass-like grains wheat, barley, rye and spelt.

What is the difference wheat allergy/gluten intolerance (celiac)?
In most cases, celiac will be systemic and result after consuming gluten after a period of time. Symptoms of wheat allergy will instead be more like a reaction to a peanut allergy (hives/rash, ect) and be per instance of contact/consumption.

As an example. J has toast for breakfast, his breaks out in a rash (wheat allergy). He continues to eat toast for the next 4 days - each day getting a rash. On the 5th day he has a digestion issue (celiac).

The main thing the Drs keep repeating to us is about J growing (on his own curve) just fine and how that’s an indicator in children- He’s still smaller than most kids his age but has grown consistently since he was a few months old . I guess we’ll hopefully find out in a week.

I really, we really, really want J to just be 2 1/2. Not unwell all the time.

For James he is a RRRockstar with R’s, apparently this isn’t usually a letter kids say properly till they are 7 or 8! He’s got them down pat, no trouble with Car, Rock, ect. He however wouldn’t attempt Zip or watch - though just now, he said “cuckoo” for watch. And all attempts to correct him result in “No! Cuckoo”.

Evelyn, is sweet was most the feedback. She seems to be dropping the end of her words-something I don’t think we noticed ourselves. Like one of the test words was “glasses” she said “glas”. Specifically it seemed “s” gave her trouble.

They suggested (and it was free that day) to get the kids ears checked - to ensure that this wasn’t why they were having troubles with some words. Evelyn did all three parts just fine (the 2nd part was a bit harder to grasp right away), but James was not into it.

They manged the first of three tests, he didn’t quite grasp the 2nd one, so they moved to the third - which involved a ‘look’ in his ear and it had to be quiet and him still. Which just wasn’t happening, so we are going back at the end of the month to try the 2nd part again - it was putting a little teddy bear into a bucket every time a tone sounded.

In the fall we’ll expect their call but already see a difference in just a day and a half in noticing and gently repeating properly from time to time or playing a game that involves those letters/sounds.

The kids have grown up SO much in the last few weeks it seems-they both had a growth spurt and are just different.

The photos from our trip are all on the photo page now.

We started our trip at 2am (mom & dad) got up and loaded up the car, the kids milk for the day and got ready ourselves. Shortly before 3am we woke J&E and got them dressed and ready for the trip. J was so tired- he was whining and walked into E’s room (we change them in there on carpet over his bedroom being hardwood) and immediately turned around and walked back to his room where he fell - face first - into his bed. We felt *so* bad for him.

It was c-o-l-d that morning, so they remarked on the coldness as we plopped them in their seats with blankets and zoobies (their blanket/pillow/animal toys). We got gas and headed on our way. J&E weren’t really interested in going back to sleep at that point so we put in “Cars” which they watched all of. Then I turned off the players and they napped till we stopped for breakfast in Illinois at a Cracker Barrel around 7:30am. Before that though we hit some nasty snow sleet mess with very little visibility. I was glad we were one of the very few people on the road at that hour. We made it thru Chicago without any troubles

They didn’t eat the best, loved the OJ though and we continued on. We had drive thru McDonald’s for lunch to try to keep good time to make it to Memphis in time to see the Ducks at the Peabody Hotel. J&E were amazing travelers! We stopped at Rend Lake, IL for a break - stretching our legs and it was a really beautiful place to have stopped. We got some fresh air, some running and a few photos. The weather by here was in the low 50’s, which compared to the 16-ish we left at, was warm enough to walk about in long sleeve shirts & pants without a jacket.

We pushed on and arrived to Memphis around 3:45pm, we found the Peabody hotel but the walk to see the Ducks was quite far! Then I had to use the bathroom and J&E needed diaper changes but the silly bathroom there wasn’t equipped to change diapers ( I found this OFTEN, far too often for my liking along our travels ).

We found the ducks and watch them for a while. But it was still a half hour off at one point and J was running around a bit crazy so we decided to leave. We debated driving further or staying in Memphis, we had originally thought to see other things around the city. We ended up calling the two hotels I had picked to stay at and then choosing the 2nd one we knew had a pool (which we never actually ended up using). We got our room and got settled - I had packed an overnight bag for us knowing we’d stay one night on the way there but things got moved around like blankets, toys and snacks while driving and so we had to make several trips and get organized.

By the time we got in our room and settled it was 6:15pm, we went in search of dinner but it was a Saturday night in Memphis we decided on somewhere nearby but don’t’ remember what - but it was PACKED, so we spotted a Taco Bell and settled for that.

We were all beat.
J&E ran a bit around the hotel, we gave them a quick bubble bath and then put them in the bed.
They haven’t been in the same room in 4 months. They haven’t shared a crib since they were 5 months old. The slept in our bed when we went to see Susie & Wendy/family in 2007 when they were 6 months old. And a random 2-3x when we were nursing when they were less than 3 months old-all the time… otherwise they’d never slept in such a big bed or together with really ‘knowing’ it.

They did well! We had to go in a few times, just to remind them it was bedtime, more because we knew we needed sleep to not be crabby the next day! And we weren’t going to fall asleep in the bed next to them if they weren’t’ already asleep.

Sleep continued to go well the rest of our trip. Naptime was a no go while at families (in the car they napped though) they wanted to play together then, but that was OK. After them not doing so the first day, we hit the mall the 2nd day and were with family the third.

The next morning we had breakfast at the hotel, a lovely spread with a custom cook to order window- we didn’t utilize this though. We were trying to get on the road. We did around 8:30. The drive was just as lovely, the weather was beautiful- a little cool to start with but warmed up. We hit some rain at some point but it cleared quickly. We ate lunch at PF Chang’s - our first time. YUM Eggplant!

We hit Baton Rouge and rang Lillian to let her know we’d be there soon-so they weren’t worried. It had taken us a bit longer to get out of the hotel earlier that morning than we’d expected - with breakfast being available there we took advantage.

We got settled and visited, and hit bed early if i remember right. It had been a long day.
The next day we walked the mall with Raymond & Lillian and came back to visit with Melba, Lisa & Landon. Later Lillian & I went to Walmart to get me some shoes and Evelyn some milk.
At some point David came by for a visit. James went to a basketball game with Raymond that night, which he really enjoyed.

The next day we stayed back at the house while Lillian & Raymond walked, and opted to take them out later instead of a nap. The nap didn’t go well the previous day. They played J&E got their first Build A Bears as their souvenir for the trip. Later Della, Joe & Christina stopped by. Raymond made a fire so J&E could see one for the first time.

The next day we spent with Mary & John, we stopped in by Jonathan in the afternoon and Melba & Lisa & family later that night. When we got back to Lillian’s she showed James her photo albums and all the memorabilia that Raymond has from his coaching days. I sorted some of our things for the next few days of travel.

We both wanted to stay longer, and wished we could have. The next morning we hung around a while before taking off. Said our goodbyes and took a slower travel back towards home, stopping for the little Capital, then Stuckey’s, for drinks and stretches, for food, and not really caring the time it took to get home.

We ended up in Memphis for the night, we drove by Graceland and then headed to the hotel we’d stayed at our way down. It worked out so well and we knew what to expect. We got settled and looked for somewhere for dinner - we settled on a Mexican restaurant very near had it not have cooled down we could have walked.

We headed back to the hotel and had a drink and the kids had a snack at the managers reception, then hung out in the room. The pool was closed during this stay - so we never got to hit the water, which was sad.

The next day we heaeed for St. Louis. We hit up the Gateway Arch and The City Museum, which were both very cool -only wish it had been a little warmer.

We then decided to head for home, instead of staying in St. Louis the night. We considered staying outside Chicago if we made it that far and going to IKEA but in the end we didn’t even go near Chicago and pushed on home. We got in around midnight.

The kids took about 6 days to adjust back to sleeping in.

So last night, we tried it with our piano and trio blocks and he was doing it (pushing the button & then dropping it) by the end, so every other day we are going to work on it a bit so he remembers the task at hand for the test later.

We were lucky enough to take some time away from Wisconsin last week to take a road trip to Louisiana to see half of James’ family. His Mom was born there, and lived there into her 20’s before meeting James’ dad who was traveling and wrestling (I think I have the story on the right path) they married and lived and wrestled together for a few years, living in Mississippi (I think) for a while, and then moved back to Canada and had Wendy James’ older sister, and then him.

Anyhow, we’d - as a married couple, only been to Louisiana for funerals, in 02 and 05. We were really overdue for ‘our turn’. Though Mary & John have been up 3 times, 2 since J&E were born! and Melba with them the latest time. Evelyn is named after James’ grandmother- Susie’s mom-Evelyn who had a twin (if James is right).

I’ve been busy uploading photos of our trip to our photo site. I have one or two more days to upload, and a day yet to edit the rest of, I only got half way thru. We had a wonderful time though- it was too short! We got to see some of the country, and even if only for a short period it was warmer!

Lil James is doing OK- you can tell he’s different with the wheat, and I look forward to the 17th. We go the week before for his pre-op physical and hopefully he stays healthy. Tuesday, we take the kids for their Preschool Screening, so watch for that update too!

Watch for an update that goes into a bit more detail about our travels. Right now, I get to go restock our fridge, freezer and cupboards.

We’ve had to take James off barley, as he’s gotten a horrible diaper style rash while eating it.
James ate rye once and broke out. Finding things to make that he’d like to eat with rye proved difficult and quite honestly we don’t need that added stress either of him not eating.
Oat (though is considered in some cases safe for celiac) resulted in bad bad diapers. I’m sure we’ll see the allergist at some point on this.

Reluctantly we’ve put him back on wheat. While he is allergic, life at least is less stressful in that we know what (essentially) to expect from wheat and he’s still getting gluten (and in good quantity). It makes for tricky days diaper wise and days when he’s itchy (we had that with oat and barley too) and changes his mood, but we’ll have to push through it. We wish things were different, but it is out of our hands.

I think we’ll be able to give him a combination of wheat/gluten free foods and then like one thing a day that’s full on wheat/gluten to keep the possible damage from the gluten happening.

T minus 35 days till we hopefully have some answers. That’s if they give us answers that day.

For anyone unaware of the procedure;
James will get an IV, and be put under anesthesia and a small tube with space for tools/cameras to pass through will be placed down his throat - it will continue on to his stomach, and then his intestines. They will look at his stomach and check for signs of damage and move on ward to the intestines and the villi where they will take a biopsy and look for damage/signs, the villi should be inflamed if he has celiac. They may also take biopsy from other areas, not sure. From what I’ve gathered, they should be able to tell us some results that day but the biopsy will take a few days to read.

It will take place 2 hours away, the actual procedure itself will take around 20-45 minutes. We’ll need to be there before the procedure and as we learned with E’s brachio/plagio stuff, usually these things aren’t on time. Then he’ll be in recovery for who knows how long. It will be a long day.

We have to take J to his pediatrician to get a pre-op physical done.

Between our upcoming visit to family and keeping the kids not sick for that, and then getting home and needing to keep him healthy for his own procedure, they’ll be stir crazy! Heck, I will!

So, I made him a gluten free/wheat free 2 cup, and 1 cup rye flour bread.
He ate some of it and was itchy the rest the night, we changed his pjs 3 times, put on lotion, gave him his prescription for itching. He also broke out.

This morning the nurse called and left a message (we were still asleep) and she said the Dr got back to her, and after talking - we are moving ahead with the Endoscopy. Someone will be calling to schedule it with us, ASAP.

He’s eaten it the last 4 nights for dinner, just straight up cooked in vegetable broth and a little butter. However, he’s itchy to the point of raw. At the same time we started oats/barley and rye, we had to change his miralax and ex-lax use, pretty drastically.

Oat was not successful at all.
Rye James won’t eat, he puts it to his mouth and then hands it back to us.
Barley, he loves but we’ll see the effects - itching raw makes me dislike it.

Hopefully we hear something soon.
He’s scheduled to see the DR in 2 weeks-the 12th of February.

Nothing so far today

This food allergy stuff is for the birds.
I’m off to yet another store today to try to find something to feed James that is wheat free, but not gluten free. By the time I successfully find something, it’ll be Thursday when we have to let the DR know how it went.

The health food store could think of one item only, and they no longer sold it, that was wheat free but not gluten free. James is getting worse by the day, though we are glad the Dr isn’t jumping to shoving things down his throat and putting him under, he’s just not good this way.

E gets her stitches out today, she was supposed to yesterday but we were gone most the day as my Dad had surgery. He was back in this morning to have another as he was bleeding too much, they had to go back in and try to stop it.

I think this household is drained to points of exhaustion.

The Dr wants us to have him on a wheat free, but not gluten free diet for a week to see how he does. To rule out gluten as an issue. However, we found out last night and today-there is like ‘nothing’ that is such. So I need to ring back the Dr on Monday and find out what we should do - we want him better… quick. He’s acting out so much, and irritable and upset over his tummy and his itching and it’s just not fair to him any longer.

However, if she needs to do the endoscopy he can’t be on gluten free foods-and we got some to try to get him off wheat, so I dunno what’ll happen Monday.

Evelyn is doing OK with her stitches, she still says it hurts on occassion but I think she more is telling us it’s there. She’s meant to get stitches out Monday, but my Dad is having surgery that day and I’ll be gone most the day for that-so we’ll have to see if we can fit it in. I’m sure Tuesday will be adequate.

We got information on screening J&E for Early Childhood on Friday-so we’re setup to do that in March. I can’t believe they are old enough for that already, but after some research I found that WI is actually starting earlier, finding it more helpful.

James went out to a work function and was gone till just before J&E went to bed normally-about 9 minutes actually. He was so glad to get to see them, and they him. They have this thing they do- mom doesn’t do it quite the same, “go-go-go”.

So they got stripped down to their diapers and gave hugs all around, and started getting excited, running around doing their go-go thing. James & I were talking-I had on my new glasses and we were discussing them.

All of a sudden E is screaming - we turn and she’s gushing dripping spurting blood.
J is screaming, wait, wha, wait…. hes’ confused.

James runs to her, puts his sleeve on her forehead and I grab a towel.
James dresses J and I wrap E in a blanket and we hit the ER. She needed pressure on it as she was still bleeding quite a bit.

Almost 2 hours later, we are home, with two overtired kids hopped up on cookies from the vending machine… and 3 stitches in E’s forehead. She tripped as she was chasing J and smacked it on our footstool/ottoman which is now in the basement.

I 100% truly believe my kids are cute now though, lol.
Every nurse, Dr and available employee in the general vicinity had to come over when we came out of the room. Gushing over how cute they are as they stuffed their hands full of stickers.

We’ll have to go back on Monday and get the stitches out. She’ll likely have a scar, but hopefully it’s healed properly by the way it was stitched up. She was AMAZING at the ER. She held still and was very calm as they did their stuff. She was not a fan of the large bandaid type thing they put on her head to numb it to put the stitches in, but it was more I think the sensation it gave her.

She is doing OK today-she’s had a slight fever and says it hurts, but only took the bandaid off once.

James is OK.
He’s having so much trouble, and I just want this over with.
I’m asking to schedule the Endo right away, when we hear the Celiac results (tomorrow I hope!).
I don’t want to do this another day more than needed. It’s not fair to him.