Tripp Trapp

Here is Ethan doing what he does best at the table...making a mess. Sometimes the food actually gets into his mouth, which could explain why he is still under 30 lbs...but hey what do I know.

From day one, Ethan has never been the easiest child to feed. Nursing him proved to be more difficult than the emergency c-section I had to bring him into this world!

Since then, he has been known as my "full-body extreme eater". He doesn't seem to be concerned with how messy he gets while eating, and certainly doesn't notice where all of the food goes once he is covered with...ie: the chair, the table, the floor, anyone who comes within a 2 foot radius of his "go-go-gadget arms"! You get my drift.

Well, we had gone shopping with my sister on Saturday to look at baby cribs as her and her husband are expecting their first child in October. My parents were there as well, because they wanted to purchase the crib as their baby present to them. So, off to Tiny Tot Land in Manchester. A rather crowded store with more baby stuff than Babies R Us could ever hope to carry, just not as well organized! However, we stumbled, (almost literally) over this chair that they sell there. It's made by a company called Stokke, and it's called the ZinderZeat also known as the Tripp Trapp. I've seen this seat before and come to find out it's been around for 30 plus years, mostly in Europe where it was originally sold. The company changed the name from Tripp Trapp because they found that us silly Americans weren't as willing to buy a chair for our children with this name...not sure why (hee-hee)! Anyway, they changed it to the ZinderZeat. Now that has been widely accepted in this country they are changing the name back to the Tripp Trapp.

Sorry for the back ground on the company, but it was confusing at first when I noticed the same chair with two different names.

So, I asked Ethan's therapist about this chair as it is supposed to help align the spine which is better for digestion and comfort while eating. It also helps with the fidgety child. For those of you who have witnessed my child eating a meal at the table, fidgety doesn't begin to explain his table etiquette.

Anyway, these chairs don't come cheap and after much searching we found that the price was the same where ever we looked. So, off to Tiny Tot Land to let Ethan pick out his chair. I was tempted to give him the choices of natural colors to match the kitchen table, but decided that if we truly want him to use this chair and enjoy it, I should relinquish my choices and allow him to pick his color. As you can see from below, Fire Engine Red is most definitely not one I would have gone with, but he appears to enjoy it.

How has it worked so far? Well, although he is still messy when eating, so far we haven't had as many dropped spoons, and spilled bowls. We are hoping that maybe we can give him regular cups to drink with now that he isn't squiggling around so much. As you can see it has a 5-point harness on it. Many of you may look at it as a problem on a 3 1/2 year old, but again for those of you who know him...he's fast. He can reach across the table, and jump down from his seat with lightening speed. Hence the spilled cups of milk and the dumped bowls of food. I'm hoping that the harness will only need to be used for a short period of time until he gets used to sitting on the chair to finish a meal. That's the other difference. It now takes him less time to eat his meals. It would take him forever to eat because he was constantly rearranging his body at the table to get comfortable. Now, that he is comfortable, he eats at a normal speed, and finishes what's in front of him. Granted we've only had the chair for 24 hours, but if it is any indication of what we can expect for his behavior at future meals, I will strongly recommend this chair to anyone with a child who is antsy at the table, or who is on the smaller size for most high chairs, or booster chairs. The website gives you a ton of information and it is : www.stokke.com . Check it out. Happy eating!

Brushing

Well, there are all kinds of brushing.

First we have the ever popular toothbrushing. With toddlers/preschoolers, it always becomes an olympic event. Very rarely do they hold still, remember to spit and not swallow, keep their curious tongues out of the way, and to look in our general direction so we can try to see what we are doing!

Second most popular would be hairbrushing. As most of you may have noticed in pictures, my children have buzz cuts. We have found it is a cheap, (I do them myself) and easy way to maintain cleanliness. Especially with my children. I've been known to call them "full body eaters". They really could be hosed down after each meal. Regardless of his lack of comb-able hair, Ethan does like to take my hair pick and try to brush his hair. I think he likes the feel of the pick against his skull!

Another favorite would be paintbrushing. Ethan would dip and paint with the little paint brushes all day long if I let him. Unfortunately, my house would then be all brown, (his favorite color so far) and the paper would be quite clean. He likes to express himself on other mediums, not just boring paper.

The form of brushing that I am now getting to isn't known by most people. It is used on children with SI Dysfunction as a way to give their muscles the input and stimulation they need, so that the child doesn't have to find another way to do it, which usually ends as a dysfunctional way.

We take a little surgical brush and every two hours we proceed to firmly press the bristles on Ethan's skin in an up and down motion, starting with his arm. While trying to continue to touch him we move to his back, and then to his other arm. From their we move down to one leg and then the other. If you start on skin then you need to do all skin. Otherwise you just go over the clothes, (as in long sleeve and pants). The process takes about 2-3 min. and 85% of the time, he absolutely loves it. After we've "brushed" him, we then follow up with compressions of his joints. We call them, "tens, or boom-booms" because when doing them we either count to ten while doing them, or say "boom-boom-boom" with each compression. Basically all you do is stablilize the joint on either side, for instance if your doing his wrist, you would hold his hand with one of your hands, and his forearm below the elbow with your other hand and compress the joint together about 10 times. Then you move up to the elbow, then the shoulder, then do the other arm, etc. Basically wherever there is a joint, you would want to do the compressions. Again this entire process only takes about 5 min. Or so from brushing to compressions.

So, how is it working?, you ask. Well, really well. We went to Maine this weekend to visit our friends who have 5 children...Age range 10-3months. Four boys and a girl. Needless to say, when we add in our active little guy, it becomes quite loud and active in the house. Generally fights break out in any situation such as these, but in the past it has usually been Ethan hitting, pushing, taking toys or items from the other kids, and just basically being a little....well you get the picture.

Not this weekend. Saturday we managed to remember to brush him every two hours, and despite the fact that he never napped nor did he ever have quiet time, he got along fantastically with everyone. We didn't have any incidents of hitting or any of his usual behavior. It was amazing.

Then came Sunday. Ethan had about 4-5 hours where the brushing just didn't happen, and it showed. At one point he took a piece of paper from his friend Henry who really wanted it back. Every time Henry tried to get it back, Ethan would run away from him. Henry tried asking nicely for it, Ethan just ran. Then, in an impulsive move Ethan crumpled the piece of paper into a ball right in front of Henry. Well, Henry was rightfully upset, and by the time I came in to intervene, (my hubby was out, and Joshua was being quite clingy) Ethan was in tantrum mode. I asked him to pick it up and apologize to Henry, he just kicked the paper. I told him to sit down in the chair, because he needed some time to cool off, and he took a swing at me. I picked him up to put him in the chair, and he just started hitting me, no matter what I tried to do.

While this was all happening, my friend Cheryl and I were chatting in the kitchen. As the scene played out, Cheryl looked at me and asked if he had been brushed lately. I looked at the clock and realized that he hadn't, and by the time we had the situation "under control", I knew the end result of this catastrophe was SI, not 3 yr. old behavior. What started out as a three yr. old game, ended in a SI meltdown.

So, I got him in the chair, and as I was brushing him, could see in his eyes that he was calming down, and could then listen to me. He just wasn't hearing me before, and when I touched him to get him into a seat he just reacted to his space being invaded. I could tell he felt bad, and didn't know quite what to do, so he went to Henry and apologized several times, even brought the paper back to him. After that, things went well again.

So, for those of you doubting Thomas' out there, who may believe that children shouldn't be labeled, and that those of us who do get our children treatment for SI Dysfunction may just be looking for something that isn't there, I say the proof is in the pudding...Ethan pudding that is. I don't put a patch on him that says "I have SI Dysfunction don't push my buttons". He just is. And if we can help him through it with "therapy" then so be it. Wouldn't you do whatever you had to do for the sake of your child's wellbeing too?

Boys!

Yes, the wonderful world of boys. Rough and tumble, trucks and dirt, loud noises and lots and lots of active play. Now, that our youngest boy, Joshua is more mobile (very fast crawler) we are noticing a bond between the two boys form.

Ethan has become very protective of his brother. He's always watching out for him. He loves to hold on to him, and is always willing to "carry" (drag him by the neck) him out of harm's way! Usually out of the bathroom or off the porch since those are off limits to Josh.

The other side of that of course is how quickly the tables can turn. One moment playing as nice as can be, and the next Josh has tire marks on his forehead because he dared to touch a tractor that Ethan had no intention of using until he saw Joshua go for it. Ah, siblings. Being the oldest of three girls myself, I can remember such incidents, but it's different with girls and boys. There's no pause, whining, or trying to figure out the best revenge. It's swift and harsh, whap upside the head, or a toy tossed directly at the offender. Boys don't think on it and sneak up on you later. They deal with head on, at that moment.

Which brings me to my next topic. Hugs. Ethan as I've mentioned before is in therapy for SI Dysfunction. His therapy is once a week, but for the past two weeks due to vacations and other doctor's appt.s we haven't been able to go...until today. It was so nice to touch base with Jessica, his therapist, again and make sure that my sanity is still in check. (For those of you keeping track, my sanity is never in check, but hey it's worth a try:)

One of his senses, tactile, is very much a problem for him. It's difficult for him to sort out what kinds of touch he likes. He's a very affectionate child, with me, but when it comes to others invading his personal space...lookout! It's like a cat being attacked. He becomes very defensive and irrational, and will lash out at the offender like he's the worst enemy in the world. It's in fact called sensory defensiveness, and it's the only way he knows how to deal with the stimulation at that moment. He does it most often with his dad and his best friend.

Here's an example:

This is Ethan's bestest friend in the whole entire world! These two are inseperable, they've known each other since they were only a couple of months old. When they are together it's like a whirlwind of activity. Sometimes good other times not so much. Part of that is certainly just being boys. The other part is definitely from Ethan's inability to control himself.

Jamie is the best hugger in the world. He gives you a great big squeezy kind of hug, that lasts. Ethan can't take that kind of hug, most of the time. For him it needs to be on his time and under his conditions. As you can see in the picture, Jamie was able to sneak in a little arm wrap, but within seconds, Ethan was brushing it off. However, a little later, Ethan is the one trying to give Jamie the hug. Usually it's brief and not a hard squeeze.

So, I spoke to Jessica about this, and she suggested what Jamie's mom and I already established. (See sometimes we're pretty smart moms!!) That Jamie should ask Ethan if he can have a hug, and Ethan has the option of saying No Thankyou, or Yes, a quick hug. On the reverse side of that, Ethan also needs to ask Jamie too, because if he wants his space respected he needs to do the same thing. I know sounds like a whole lot of words for two little 3 1/2 yr. olds, but we've seen it work. Jamie asked Ethan if he could have a hug, and Ethan said No thankyou. About 2 minutes later Ethan asked Jamie for a quick hug, and they did. Jamie was excited to be able to hug his friend, and Ethan was happy that his space wasn't overly invaded. They were both smiling...success.

The good thing is it gives us some insight on to how Ethan interacts with Joshua sometimes. Josh is very snuggly and will crawl up to Ethan wanting to just be next to him, and Ethan will kick him or push him away. But if you give Ethan his space, he is the one going up to Josh and giving him love and affection.

So, now is when I tell you this is my life with boys. It's all I've known for 3 1/2 years, and it has been quite the learning curve. However, we had an ultrasound this past Friday, and found out that the little one we are expecting in January will be a little girl. We are so very excited. She will be a wonderful addition to our growing family. Mike and I can't keep the smiles off of our faces everytime we think about her.

Poor thing...she's in for it!! :) But hey, who knows, maybe she'll be the one to teach these boys a thing or two!

Kidney Beans

Ah yes, the magnificent kidney bean. Packed full of nutritious vitamins, minerals and what have you. But, did you know they aren't just to eat anymore?

That's right. They are also great fun to play in!

Well, at least 24 pounds of red kidney beans in a rather large rubbermaid container, anyway!

One of the fun things Ethan looks forward to doing at his therapy is of course play in the ball pit...really who wouldn't?...but his second favorite is the bucket o' kidney beans. So, we went and bought said bucket and said amount of kidney beans. Throw in a few toys and wahla, we have an instant bucket o' fun!

He is allowed to play in it only once a day right now, because otherwise he would spend all day in there. So, we usually give him about 20-30 min. a day to have at it in his "kitty beans" as he calls them. (That's pretty good considering he was calling them coffee beans.) From morning until night it is the question of the day..."Mommy can Ethan play in my kitty beans?" My answer, "okay honey how about after breakfast?" His response while eating his breakfast, "Mommy can Ethan play in the kitty beans?" My answer, "what did Mommy say just a few minutes ago?" His response while refusing to take his vitamins, "after breakfast".

A few precious minutes of silence...and then..."Mommy when can Ethan go in the kitty beans?"

So, this is my day. The good news though is it has added one more item in my list of toys and/or activities Ethan can lose when his behavior is unacceptable. It is one of the more effective ones for now.

Even better is the fact that Joshua gets a kick out of just watching his brother play in there. As you can see we gave Josh a few minutes of play time in the bucket and he absolutely loved it. Unfortunately, he is still in the "gotta put it in my mouth" phase and can't be trusted with the beans. So, for the most part he spends his time growling and screeching at his brother to make more noise with the toys and the beans from the sidelines. He's so supportive! :) He doesn't mind so far, and until he stops trying to eat the beans, he won't be allowed to play in them for a little while.

What is the point of this bucket full of beans? Well, it helps Ethan with his tactile sense mostly. Right now, Ethan is very particular about where the beans are. For instance, he doesn't mind his hands touching them, or even his feet, but he doesn't like his legs buried, or his clothes covered. He stands up every few minutes to dust them off of him. He loves to pour them from container to container, but doesn't do much else. We try to encourage him to look for buried animals, dinosaurs etc. We have cars and things to try pushing through the beans with. It's a developmental thing that we have to work on, that's also fun for him. So, he has no idea that we are trying to teach him, which is nice.

There are many more activities that we can do with Ethan and as his therapy continues we'll be able to adjust his play time to what he's enjoying and learning the best from. Unfortunately we don't' see Jessica until the 15th due to vacations and schedules. However, we've already seen improvement in the way he plays in the beans, he now lets us pour them over his head...occasionally. :) Hey, it's a start!

Sensory Integration Dysfunction

It is the ability to organize your body in such a way as to be able to respond properly to any given situation. The dysfunction part comes in when you can't do that! :)

Ethan was diagnosed with mild SI Dysfunction. Yesterday was his second visit to Easter Seals for Occupational Therapy, (OT) with a wonderful women named Jessica, whom Ethan absolutely loves. She is a great person who really knows how to work with children. As a matter of fact she's seeing SI Dysfunction in a lot of children who have Celiac Disease, including her own daughter who was just recently diagnosed and placed on the GF diet. We are amazed at how alike they are.

So, what's the therapy like...playtime. At Easter Seals they have a huge room full of swings, matts, a rock wall, blocks, chalk board, zip line, scooter boards, therapy balls, and the ever popular ball pit! It is deeper than my son is tall, (which isn't saying much as he is pretty short I know) but he can completely bury himself in there and we wouldn't be able to find him!

Basically, Jessica watches what he chooses to do, how he does things, and what his reactions are when she suggests something else. Based on this she is creating for me what is known as a Sensory Diet. It will be activities we can do at home every day to help Ethan organize his body to better handle daily situations.

One of the things we both noticed was that Ethan seems to be regressing a little bit. He's stopped using pronouns and constanly refers to his name when asking for something, or demanding something..."Ethan wants a drink...Ethan wants to stay home today...Ethan needs to rest, Ethan's tired" etc. He's also started to find everyday things that have been around for a while scary, creepy etc . He's noticed temperature differences and the way his body feels when he's full, hungry, and even now the way he poops. It's all new to him in a way that it should have been when he was younger as most children develop. Now, he's going through it and it's triggering all sorts of different responses than it would have 2 years ago. This actually makes it more difficult to manage. So, Jessica is paying close attention to this development.

In the meantime, we try our best to help Ethan cope with these new sensations. It's a relief because it means he's finally healing, and his body is functioning the way it should. However, it's incredibly frustrating, because now we have to take into consideration these new sensations whenever he has a tantrum, or an outburst over a something simple.

Oh the things we learn. In the meantime, if any of you have children who have been diagnosed with Celiac Disease, you may want to have them checked for SI Dysfunction, as the OT at Easter Seals has noticed an increase prevalence in Celiac and SI Dysfunction in young children. Honestly it can't hurt, it's not a life long "label", and even if it is...who cares? If it means your child will have an easier time coping with lifes day to day activities why wouldn't you want to have him treated. If nothing else, it will help with your own sanity! :)

Catching Up...

Well, we haven't been around much to put everything that's been going on in the blog. So, I will try to catch everyone up without making this a novel...I hope!:)

Health wise the boys are doing great. They had a check up with CHAD's GI Pedi. and Ethan gained 1/2 lb. in a month and Joshua grew 1/2 cm in a month. Not exactly what you or I would call huge gains but they are gains none the less. Ethan has been placed on two medications...one is an appetite stimulant and the other is Pepcid to help with the indigestion he will have from gaining a larger appetite with a little stomach. The thought here is to help increase the size of his stomach so it can catch up to where it should be for a 3 1/2 yr. old. The doctor said sometimes they will gain up to 5 lb.'s in the first month...I'll believe it when I see it. Although I must say that he looks like he may be plumping out in the cheeks a little bit! Joshua just has to have Pediasure once a day mixed with Duocal, as well as adding the Duocal and some formula to anything we can for when he does eat. He is mostly on people food now, doesn't really care for that baby stuff anymore!

Speaking of which, we celebrated Joshua's very first birthday on July 4th. My little independant guy is now crawling, and pulling himself up everywhere. Usually it's too yell at me because I dared to leave the room, but nonetheless he is making progress towards his independance. This is a picture of Daddy and the Boys enjoying some pool time at Grammy and Grampy's house on the 4th. I have two little fishes. We usually have to drag them out with a fight because they think they could stay in there all day. It is my aunt's pool and the water temp is usually around 92 degrees! So, it's like a large bath...who wouldn't want to stay put??
This past weekend we were also quite busy with two family parties. The first one was for my husband's side of the family. We went to Wellington State Park on Newfound Lake this past Saturday. We got there around 10am, and more than 40 of his family memebers gathered there as well. Kids and grownups of all ages. Ethan went swimming in the lake, it was his first time, and again had to be dragged out because his lips were blue and he couldn't stop shivering. Josh and I stayed in the shade on a blanket munching on snacks and trying to keep him from eating pine needles. Tough to keep a crawling baby on a blanket when there are so many things around to put in his mouth...pine needles, sand, bugs, more pine needles etc. As you can tell from the picture however, he was thrilled just to be outside and not far from mommy's side.
For lunch everyone had to bring their own food, a fire pit was provided. So, we brought GF hot dogs, beans, chips, carrot sticks, fruit cups, juice boxes, etc. We had a little camping pan set to cook all of the food in so that we didn't have to worry about cross contamination. It worked out well. For dessert...M&M's!!
Ethan had such a great time. As we were packing up and decided it was time to "play" a little baseball with his cousins. Well, his idea of baseball was "vacuuming" the pine needles in the sand by pushing them around with the bat! Shortly after this picture was taken, he had a large meltdown because he was absolutely exhausted! Needless to say, both children slept in the car on the way to our next family party.

Unfortunately I don't have any pictures from this second party because my camera wasn't used. However, I'm sure that if any of the Ruffing's have some they'd like me to post here I will put some up in another blog if they email them to me.

Anyway, our extended family, The Ruffings are antoher large family that we've been "adopted" into. My husband has known them for over 20 years, and all of the kids are now growing up together as well. And Ethan knows each and everyone of them. It was another barbeque, followed by a giant game of whiffle ball. Then after everyone was satiated and ready to sit back and relax, we had the family picture. It will be interesting to see how they came out between babies not looking, toddlers roaming, and adults complaining because we had to take "one more picture"!

All and all it was a great time, and that night we had the pleasure of Dennis and Cheryl with two of their five children spend the night at our house. Ethan loves it when he can wake up in the morning with visitors.

So, on Sunday, after church all of the Ruffing's again got together but this time it was at a ballfield. We went to see the Manchester Fisher Cats play the Portland Sea Dogs at the Grappone.com ball field. We weren't sure how are chitlins were going to do and this was the first time we went to an event since being GF. Fortunately, between our friends Cheryl and Jeanine who both have GF diet issues in their families we were able to prepare accordingly. We fed Ethan before we went and packed a bunch of snacks not knowing what kind of food he might be able to eat. They didn't even check our bags so we didn't have a problem bringing in what we needed. Come to find out, they serve bagged peanuts and Craker Jacks! Both of these products are GF!! Ethan didn't care for the Craker Jacks, but my goodness, Joshua did. We lasted until the 8th inning surprisingly, but between the heat of the day, (our seats thankfully were in the shade...thank you Cheryl!) and the lack of a nap, our children were ready to head home.

As you can tell from these two pictures the boys had a great time anyway.
They both fell asleep on the way home, and shortly after that Dennis, Cheryl, Sam, Jack and the four of us all went out to dinner at Bugaboo Creek. Their GF menu is great with quite a few choices, and the food tasted wonderful. Ethan and Sam enjoyed the ambiance of the place, (talking moose head), and we enjoyed the fact that we didn't have to cook, and clean up.

It's been an amazing past couple of weeks. We've had to adjust to so many dietary limitations, that it was nice to get out among our friends and family and feel...mostly normal! We are Ouellette's you know...normal is hard for us to do!!

So, thank you to everyone who allowed us to share in food, folks and fun. The memories and pictures will last a lifetime!

Coeliac Center

I know, some of you may think I misspelled Celiac, but in actuality that is the correct spelling. It was us silly Americans who can't stand too many vowels together who decided to drop the "o" and spell it Celiac. Either way, it still the same disease. And come to find out it's been around since the first century!!!

We went to an inaugural meeting down at Newton-Wellesley Hospital on Tuesday night. We were invited because we are one of many parents with children who have recently been diagnosed with Celiac Disease from that practice. MassGeneral Hospital for Children wants to establish a Celiac Center that will meet 3-4 times a year with one or two bigger Greater Boston gatherings. They would like to establish a way for everyone to not only be involved in the latest information, testing, and foods available, but also give us a way to connect with other families who may be struggling in similar areas with their children.

The meeting had a great turnout, standing room only if you were late, and they also provided plenty of gluten-free foods to try and enjoy. It was a wonderful way for us to try some new foods, without having to spend the money and find out we don't like it. They even gave away samples of Pediasure, Boost, cookies, crackers, fruit snacks, etc. to anyone who wanted them.

The testing on this disease seems to be changing so quickly its tough to keep up with. For having it be one of the oldest diseases they certainly don't know a lot about it. In fact it wasn't until World War II when they really started identifying it as a problem. Prego brain here and I don't remember all of the who's and what's of the history books, (not my strong subject in school) but basically during the war, one of the countries over in Europe had been completely cut off from any wheat containing products. In that time, despite some of the hunger, many people started to feel better as they were living on meat, potatoes, and vegies. When the war ended and the supply started coming back in, many of those same people became sick again.

It is still difficult for the medical community to agree on the best way of testing individuals for this disease. We've found even in this short time that most of the medical community still don't even know what Celiac Disease is, never mind know how to test for it. Even the speaker at the meeting we attended agreed that most of us in that room knew more than half the doctors out there. Why? Well, when something affects your child's life the way this disease or any disease for that matter does, wouldn't you research and try to learn all you could about it for your child's sake??? Even the dieticians in the room, said that after the first meeting with parents, generally the parents come back to the next meeting knowing more about the diet than the dietician did. One of them even suggested that maybe they should try the diet for 6 months and see how difficult it is.

We look forward to many more of these meetings, and look forward to a time when all of the research and awareness pays off so that others may be diagnosed and treated before its too late.

For more information and/or a place to make a donation you can visit www.silly-yak.com . We ordered some bracelets and a t-shirt for Ethan because really he is our little Silly Yak!!

Evaluation

Well I took Ethan to his Easter Seals sensory input evaluation. I say I here because Michelle fell down the stairs at home last week and seemed to have pulled somthing in her shoulder, she did not sleep all weekend and the doctor wanted to see her at the same time Ethan's appointment was. Sooo I took Ethan alone. As every mother knows a father bringing a child to something that requires answers of daily routine can be quite...interesting.

So we met Jessica, who by the way is excellent. Ethan was a little hesitant at first but he soon warmed up to her. She had him sit and play with a big ol rubbermaid bucket of beans and he loved that. Then it was on to puzzles and writing. Which he did fine. She would like to see him hold a pen/pencil correctly though. After that we went into the big room which had all sorts of fun things to play with. There was a ball pit, which he could not get enough of, the other toys that he loved was the zip line. I would place him on the line and push him he would hang there until he was over the ball pit, then he would drop. He LOVED it, we must have done that 10 times, at least. Then there was the scooter and ramp which he loved as well. He had a blast.

Jessica put him through a set of tasks and tests to see where he was developmentally. Seems that the little guy is doing ok. She seems to think that he needs a bit of work but nothing serious and nothing long term. Which made us feel better. She will come up with a report in a few weeks and a plan as well. So we shall see.

If you see Michelle please be nice, the meds are making her quite groggy.

Later
.mike

Peaceful

I found this picture in a moment of quiet time that I had to myself. (Ethan upstairs "napping" and Joshua in the other room yelling at his toys in frustration because they, not he, keep moving in the other direction!)

It's amazing how much my big guy has changed in these past few months. With everything he's been through, he's still my little guy. He tells me he "loves me soooo much" and always wants to give me big hugs and kisses with his little pursed sticky-outy lips. When I go in at night to say a little prayer over his head, I whisper "Good-night, I love you, Sweet Dreams, God Bless...and usually he is murmuring each and every word right back at me in his sleep. Sometimes I even get a little hug or a pat with another "I love you soooo much mommy."

It helps to reflect on those times, because during the day my little angel and I butt heads constantly. He can be extremely defiant, stubborn, demanding, and strong willed. All qualities I know will be wonderful in the future if we can just give him the right guidance. Usually by the end of the day, my guidance ends in a "one more time from you and you will go to your room without any toys!"

No matter how our day goes, it's amazing to me that he is able to let it all go at the end of the day and give all he has to give in love to his mommy. It goes to show that as always we have so much to learn from our children. At the end of the day, we still love each other, we still hug and kiss, we say our prayers, God Blesses and Good Nights, and talk about a whole new day to start in the morning. I just love my children.

Looks like it's me too!!

For those of you who have been following the blog, you may remember that I mentioned I was going to have some blood work done for the pregnancy and was going to ask about having the DNA test done to check if I have the gene common in most Celiac patients.

It is called the Human Leuokocyte Antigen test and they are looking for two possible haplotypes...DQ2 and DQ8. Those two are the most common genes found in all known Celiac cases. Ethan was tested and he has DQ5 and DQ8 and Joshua was tested and has DQ6 and DQ7. So, knowing that I can't have the scope and knowing that from the research I've done, if you have the gene then at some point you will develop the disease I figured I would at least check to see if I have the gene because my anitbody test had come back negative.

Well, folks consider me now gluten free! I was positive for DQ8. I have to meet with my primary care doctor at the end of the month to discuss the results, but my history with them tells me they will just say that without an endoscopy thay can't confirm or deny Celiac Disease. A couple of their nurses didn't even know what the disease was when I called about it, so I'm not going to put much faith in their knowledge. It's unfortunate when we can find all of this reasearch on line and even read about it in magazines, and hear about on the nightly news, yet the medical field still seems to be in the dark.

For me, I have been so sick with this preganancy so far, and am now on anit-nausea medication because of it. I wasn't really surprised to find that I have the gene, and I wouldn't be surprised if I have the antibody test redone to see it spiked now.

Some of you may wonder why I would want to just go gluten free without a "confirmed" diagnosis. But if you think about it, you can relate it to diabetes. If it runs in your family and you know your chances are pretty good once you hit 40 that you will be diagnosed, wouldn't you try to exercise and watch your diet to prevent this disease?? It's the same thing with Celiac Disease. If you know you run the risk of the damage beginning at some point in your intestines, why wait for the symptoms when going gluten free will not only prevent it from happening at all, but is just a healthier diet to begin with??

Besides, with my son and my husband both gluten free, it's just plain easier at meal time. We will be having this baby's DNA tested ASAP, to find out if it is predisposed to this as well.

I urge and encourage any of you who may have experienced any kind of irritable bowel, problems digesting certain foods, if your overweight and can't seem to lose the weight, underweight and can't seem to gain, or have a litany of other health problems already, get the blood test done. Other than the needle stick, it's pretty easy to do, and worth so much in the end as it is an easy solution in comparison to what the future may hold with meds. and hospital visits.

You can check out the link to the right for more info on the testing or you can leave a comment with contact info, and I'd be happy to send the info your way.

Busy, Busy, Dreadfully Busy...

For those of you who know an old Veggie Tales tune...

Anyway, we have been terribly busy. Our house is officially on the market, and we've been officially diagnosed as insane!! :) Oh my goodness! Some of our friends who have successfully made it through this craziness weren't kidding when they told us it was hard to keep a house clean with children running around. But we figured, hey, why not make it a little harder by adding a few more cherries (pits included) t the pie!

First cherry pit, I'm pregnant, and for those of you who have been in this condition at any point in time but more or less in the heat of the summer months for your first trimester, you know what I'm talking about. Nausea combined with a serious lack of energy or motivation can make it tough to care for my other two children never mind keeping the house in tip top shape in case someone wants to see it.

Second cherry pit, although we are done now, for about a week I had to take stool samples on both of my children. Ethan had 14 samples, and Joshua had 9 samples. They had a 4 hour doctors appt. last Thursday where they were tested for cystic fibrosis, both tested negative, as well as a whole lot of other possiblities. They had blood work, and the doctor who by the way I absolutely love, recommended the stool samples for both boys because she wants to rule out some other possible GI complications. For example: yeast, parasites, or any other inability to digest nutrition properly. Now for those of you who've been following this, you may be wondering why BOTH boys are being tested. Well, although Joshua doesn't have the gene for Celiac Disease, it's possible that he has his own problems with growth that could be related to hypothyroid, or the human growth hormone. He hasn't grown in lenght since he was 6 mos. old, and he's now just about 11 mos. old. So, for those of you keeping track, I have one child Ethan who "grows" in height but not in weight, and my other child Joshua who "grows" in weight but not in height. I put grows in "" because they are still only in the 3%-10% range for their height/weight growth.

I have never been so obsessed with food and the various calorie combinations in my life. All the little games I have to play to get them to consume as many calories as possible, has burnt me out. Not to mention that with my food aversions right now, it's no easy task to make something look yummy when I just want to vomit all over the floor! At least I have a friend who I can talk to who has been going through something similar with her daughter, so she has been able to give me suggestions based on what has worked for her...lifesaver!!! (you know who you are)

So, if my posts get farther apart, it's just because we have been busy. And amongst all of that busyness we hope to enjoy some sort of family time here and there! I am just about 9 weeks, so hopefully only a few more weeks of this ick feeling. Then I'll have a little more energy. (You'd think I'd learn by this time around!)

Successful Doctor's Visit

Yes, I did say successful!!

We went on Friday to see Dr. Russell and Kathy the dietician. I was very nervous that nothing was going to be different, but decided that whatever happens, at last we had wonderful doctors who have been helpful and supportive so far.

Well, my little guy gained 1 lb. and 5 oz. in 24 days!!! Granted, he was very constipated, but even once that waste was removed he still had a positive gain of weight!! He hadn't grown at all in height though. It seems to be the pattern with him. If he gains weight, no height gain and vice versa.

The dietician looked over the food journal I had kept every day for the past 24 days. First let me just say, it is exhausting trying to keep track of every little morsel of food and drink that goes into a 3 year olds body. I can't imagine how much more it would be if he was eating normally!!

She calculated 5 of those days in calories and came up with an average of 1000 calories a day. Better than last visit where he was only taking in about 800 a day. However, he still needs at least another 400 calories a day to really be able to put on the weight.

Back to the constipation, we went back to his glycolax, and we had to give him a suppository to try and clear him out. Boy does that stuff work well. His belly actually went down enough for us to notice and he isn't complaining about pain in his belly anymore.

The doctor was so pleased that he won't see us back for 3 months unless Ethan continues to have constipation problems. Which is fine with me, as long as we can keep his appetite up, which has definitely increased over the past several weeks.

This week both Ethan and his little brother Joshua will be going in to have a sweat test down for Cystic Fibrosis. The pediatrician doesn't believe they have it but she wants to rule out any and all possibilities. It's not invasive and will only take about a half hour or so for each of them.

With the summer coming and the possibility of us moving to a new house soon, we look forward to many cook outs, ice cream sundaes and outdoor activities. All of which should help Ethan gain the weight he needs, so he can grow up "big and strong like his daddy"!

Late Mother's Day Thanks

Happy Mother's Day!

Well better late then never!

Sorry sweetie. Spending mother's day at the hospital with you family is not the best of days. But everyone is ok and home now!

Just a little update. We woke up on Saturday morning took one look at Ethan and called the doctor. The whole let side of his face was swollen. So the nurse said we should come in, we did and the doctor on call decided it best to admit him. So we go to the hospital, Ethan gets admitted, gets an IV, blood work and a Catscan and handles it like a pro. After dad and Ethan spend the night at the hospital Michelle and Joshua come to the hospital for a mother's day breakfast, which was a Dunkin Donut's bagelwich thing. To make a long story short he is home and fine, he is on antibiotics and should be fine.

Now I have a chance I'll thank my wife for the job she has done. 2 children plus one on the way. She is doing a great job. I know it's not easy but she does a wonderful job. Both boys are loving and lively children who love their mother! So I'll speak or the boys and say "Mom you are doing a great job!" changing diapers, feeding a pre-schooler (is that what they call a 3 year old) who had Celiacs disease. As we all know feeding a 3 year old who can eat anything is a challenge not to mention one who had dietary restrictions . Put a 10 month old in there as well as running a house hold and you have one busy mom!

I know I don't say it enough as well - you are doing a great job! Thank you!

I love you!
.mike


ps - She did get an early mother's day present - I just could not wait to give it to her. Once you come to our house you can see it. Ethan and Joshua did a great job!

pps - I should also mention that her birthday night out was a bust as well - everyone was sick. So I swear that I'll make it up to you sweetie! Love ya!

Our Growing Family

It is simply amazing how quickly time flys. One moment we are in the hospital expecting everything in our lives to change dramaticaly with the arrival of one little boy. That little boy not only changes our life but opens our eyes to so many possibilities. We get comfortable with the way our life has changed...(you know after those first couple of months of "are we doing this right??") Sleepless nights, engorgement from an impossible nurser, and all of the trials and tribulations seem small compared to the end result, a happy smiling child.

So, then we figure that we are ready to bring on baby number two. I mean if we can handle this little bitty thing, why not another? Plus, with my Mother-In-Laws failing health we wanted to continue to bless her with more grandchildren as these little ones gave her the strenght to fight for her life. Unfortunately she passed away in June of 2004 before we conceived our second child.

With the happiness of the second pregnancy and the sadness at the loss of our beloved "Maam", we began to settle into the fact that our life was going to change dramatically again. But life dealt us a whole new change...a miscarriage. With heavy hearts, and a lot of prayer with close family and friends, we discovered just how much we both wanted to continue trying to grow our family. Plus, it was a comfort to us to know that our daughter was up in heaven with her Meme. This loss strengthened us to try again and bring forth more children into our family.

So, we tried again...and were blessed on the 4th of July with our newest bundle of energy...another boy. Needless to say, we've had our hands full. Being dealt with Ethan's Celiac diagnosis, and subsequent eating issues has been difficult at best. But every night when I go in to kiss that little sleeping head goodnight, I reflect on the millions of times during the day when he told me he loved me, or gave me a hug for no reason. I say a little prayer of protection, kiss him good night, and ask God for another day in Paradise...knowing that we will have another day with more trials and tribulations, but more importantly it will be another day full of kisses, hugs and I love yous!

So, you say, where exactly is she going with this?? Well, we are here to tell the world we are happily expecting our lives to change again with the expected arrival of Baby Ouellette (known to some as Bumby...don't ask) sometime in January!! We couldn't be happier. Yes, our lives are crazy, tiring, and some days VERY trying...but we both agreed that God knows what we can and can't handle, and apparently He has a lot of faith and trust in us. So, why not let Him decide how many children we are to have as well as all that comes along with them.

We don't know where life will lead us. We don't know how long we are here. But, what we do know is that we need to make the most of our time, and we both want our children to be part of a large family who will be able to help take care of each other, support each other and above all love each other through all of their day's.

My children on earth will never know who their Meme was, while my child who has gone to heaven sits in her lap and keeps her company. But we are determined to keep her memory alive by showing them the ways she cared for and loved her family before she died.

Just look at the smile on her husbands face as he holds his two grandkids. Tell me that isn't reason enough to have more children!

Frustration

So, we met with Dr. Russell yesterday. The good news...despite two gastrointestinal illnesses Ethan managed to gain a little less than 1/2 a lb in about a months time. Not exactly what the doctor hoped to find, but better than losing. He is now 25 lbs 1 oz. We're thinking that maybe by his 16th birthday he'll be able to get into a booster seat! :)

Seriously though, the bad news is, the doctor has decided to put Ethan on a couple more medications, and even talked to him, (man to man!) about what he needs to eat and drink.

He isn't allowed to have water anymore, (although I vetoed that for bedtime, I'm not going to start racking up dental bills in an effort to gain what little weight he can by drinking milk or juice through the night!) Any liquid he takes in must be milk, pediasure, or carnation instant breakfast. Juice is alright if all else fails. We will be using heavy cream in any concoction we make for him that requires milk ie: mac and cheese.

We went to the grocery store and he chose Classic French Vanilla Instant Carnation Breakfast, and Chocolate Pediasure for his drinks. Now, you'd think like most kids he'd be thrilled to have a milkshake all day long. Oh no, it took him ALL day to drink the carnation breakfast, and even though he kept begging for the choc. shake at dinner time, it is now, just about 8am the following day and he still won't even try it! We even went out and found new insulated cups that aren't little kid sippee cups. He picked out the color...no still won't drink it.

So, we've resorted to taking one by one his dump trucks away. He asked for two waffles this morning for breakfast, ate about half of one, and decided he was done. As mentioned before wouldn't touch his choc. milk but kept asking for water. He used to get water in the morning with his Glycolax for his constipation. But the doc put him on a liquid form of it so that we wouldn't have to give him water at all. That 40z of water would last him most of the day!!!

As of now, he has lost two of his favorite dump trucks for the day because he wouldn't finish his waffles, and wouldn't drink his choc. milk. I'm at a loss for what else to do. Any and all advice will be taken under careful advisement, as well as be much appreciated. But I will warn you, we've tried a lot of stuff so far. Even the doctor was stumped when we told him about Ethan's lack of milkshake drinking!

The other medication for Ethan is to help stimulate his appetite. This one makes me a little nervous. It is to be given 20 min. before every meal to empty out his stomach and make him feel hungry. Possible side effects...headaches, anxiety and a very rare one of twitching in the face and arms. If the twitching occurs we need to stop the medicine immediately other wise the twitch could become permanent. The doc told me that it happens rarely, and that if it were to occur it would happen within the first few doses of the meds. If we notice it and remove him from the meds. then any effects will be gone no problems. Yikes! I"m not stressed enough, why not add one more thing to it.

Even the doc admitted that I have a lot on my plate with this because not only does he have a restricted diet with Celiac Disease, but he also battles constipation, general bathroom issues (which means they better make a size 7 diaper soon, because containment wise he's going to need it at night! otherwise he'd still fit into a size 4!) as well as a typical "I'm the boss of me" three year old attitude. Every thing is a battle. He'll eat for his Auntie Sherry, when he goes to his friend Jamie's house, or when he's with his Auntie Terrie, but as with most 3-yr olds, it's a battle for good old mom. We've decided we'll have to work out a rotating feeding schedule with all of the above if we hope to put any fat on my child!! :) {Your schedules will be sent to you within the week!:)}

Rice-tastic

Actually the joke is on him! Sometimes peer pressure can work in your favor. Well, that and letting a little mess go a long way.

We decided to let Joshua try some Jasmine rice the other night, and in doing so, encouraged Ethan to eat more than usual. It was an incredible mess, but well worth the it. Plus, they had a blast.

We've found that Ethan's appetite has improved tremendously since he had the stomach bug that went through our family several weeks ago. We'll find out tofday if it has resulted in any sort of weight gain when we meet with Dr. Russell.

As for the Duocal supplementation, well we get anywhere from 1-2 servings in a day. Usually in his milk. Although, I've smartened up, make the milk ahead of time, and use it in his mac and cheese preparation as well!! Soooo sneaky!

Parkers Maple Barn

The unthinkable happened...we ran out of maple syrup!! That's right. We finally found a food that Ethan can't seem to get enough of. They are brown rice chocolate chip pancakes fortified with cinnamon and flax seed! They are very good, and Ethan likes them best covered in a thick layer of butter and drowned in maple syrup.

So, we figured we'd take a little ride out to parkers Maple Barn on Saturday, you know just to get some maple syrup. I packed a GF muffin and donut, as well as a cheese stick and some organic applesauce for Ethan just in case we decided to have some lunch. We were quite famished after our ride out there and figured we could always go for more breakfast foods at noon time...after all it IS a restaurant.

I chatted with the staff and although they hadn't heard of Celiac Disease they felt confident that they could provide a suitable egg dish for Ethan to eat. We were seated and I gave the waitress a restaurant card I designed to explain to the staff what gluten is and how to cook without it. They were so great about the whole thing. They cook scrambled eggs in separate pans anyway, and they use an egg substitute which they brought out to me so I could check the ingredients.

It was so nice to eat out like a family and not have to worry about what Ethan can or can't eat. He was able to eat most of his scrambled eggs, plus some of the GF muffin I was able to bring in with us. Joshua even tried a home fry and decided it wasn't to his liking!

All in all it was a fun family outing that we were all able to enjoy. I highly recommend this place to anyone, but especially to those with food issues as they were incredibly accommodating!

Paradise

We have some good friends who also keep a blog and one of their recent blogs was one called the Optimists Club. As usual I was moved by the way they look at life and what God has given them, both in blessings and trials. I truly believe that these people are part of our lives because they have enabled me to look at life from a new perspective. (Well that and we always have a great time together!) :)

God does give us many blessings every day, even in ways we are unable to see at the time. Everything truly happens for a reason.

Having said that, a country song (I know big surprise) comes to mind. It's calle Just Another Day In Paradise by Phil Vassar. For those of you who don't know it I've included the lyrics because for so many of us, we really are blessed by God to have just another day in paradise.

Kid's screamin', phone ringin', dog barkin' at the mail man
Bringin' that stack of bills
Overdue, good mornin' baby how are you
Gotta half hour, quick shower
Take a drink of milk, but the milk's gone sour
My funny face makes you laugh
Twist the top on and I put it back
There goes the washin' machine
Baby don't kick it, promise I'll fix it
Long with about a million other things

Chorus
It's OK, its so nice, just another day in paradise
And there's no place I'd rather be
Two hearts, one dream, I wouldn't trade it for anything
And I ask the Lord every night, ohh
For just another day in paradise

Friday your late, I guess we'll never make our dinner date
At the restaurant, you start to cry, baby we'll just improvise
Plan B, looks like Dominoes Pizza in the candlelight
Then we'll tippy toe to our room
Make a little love that's overdue
But somebody had a bad dream
Mommy and Daddy, can me and my Teddy come in and sleep in between
Yeah, it's


OK, it's so nice, just another day in paradise
And there's no place I'd rather be
Two hearts, one dream, I wouldn't trade it for anything
And I ask the Lord every night, ohh
For just another day in paradise.

Enjoy your day in paradise!

Clarification

I'm not sure who anonymously posted a comment to this blog, but let me just clarify...I would NEVER, EVER hope for my child to be hospitalized. I know other children, and have experienced first hand what it's like to have a child in the hospital for any length of time regardless of the reasons. The point I was trying to get across is that while I fear a hospitalization, if it were to happen I know that I would deal with it because he is my son, and I will do whatever it takes to get him over this bump in the road.

I Just Had To...

...weigh him!

I know, I know, I was told not to by the doc. However, it's been a week and a half, and I NEED to know if he's making any progress. I pleaded with Mike to weigh him, and he finally let me. I know I need to stop this, but I am very worried about his lack of appetite and eating.

Well, he hasn't gained anything yet. We struggle just to get ONE of the doses of Durocal in him, never mind five of them. We've taken a lot of suggestions and tried them with little to no luck. My biggest fear at this point is that he will need to be hospitalized with a feeding tube to try to get him over this hump. I can't begin to explain how it feels to have no control over this, because we can't force him to eat, (well we could, but then we'd have to pay for the therapy bills later!:)

I truly hope that with this nice weather coming, the fresh air and outdoor activity will spike his appetite and we can put this fear to rest. On one hand I wish it would just come to a hospitalization because then at least we might begin to move past this. But then I think about having him in there with a feeding tube...and just the thought brings tears to my eyes.

The good thing is that he still seems to eat more at other people's homes. This leads me to think we already have a stigma with eating at our house...that will be hard to overcome since over 80% of his meals are here! Well, keep praying.