Gluten Free Cookie Swap

We had our very first gluten free cookie swap at our house this year. It is something we hope to do every year with the families from the R.O.C.K. group.

This year we had five families participate. It was mostly moms with children under the age of 7, but we did have one brave 12 year old come out for the fun as well.

What a blast...as you can see Ethan was elbow deep in frosting! One mom brought along all the toppings and ingredients necessary for cookie decorating. All gluten free of course, but the look on these kids little faces when they were told that EVERYTHING on the table was for them to eat...was priceless. It's a wonderful site to see such happiness on the faces of such little children over something that most of us would take for granted.

How many parties have you gone to where you looked at the table and wondered what up there was okay for you to eat? How many parties have you gone to where you wondered if what you did just eat would make you sick later? That's what these little kids (and adults) have to do everywhere they go. Except for this cookie swap. Granted we had food coloring to clean up, cookie toppings all over the floor, and 5 or 6 kids running off all of that sugar later, but it was well worth it.

One mom even brought gluten free pizza in real pizza boxes. I have to say I was thrilled to see a real pizza box in my house with pizza that we could all eat. AND the best part is this pizza was delicious the morning after as well. (I love a yummy slice of cold pizza in the morning!)

The cookies were all delicious as well, and the kids were just overwhelmed by so much yumminess within their reach. Mike and I were so happy to have held this party for not only these families, but for our children as well. Ethan and Josh had a blast, (although Josh missed the cookie decorating as it was way past his bedtime) as they were the only little boys running around with a bunch of girls. We look forward to doing more of these types of get togethers for everyone within our group. It was a wonderful way for us, the parents, to be able to compare notes on our children's health, discuss what has and hasn't worked for food ideas, and just share with each other our fears of how the outside world perceives our children with this disease. (For example schools, families, friends etc.) We know we can't put them in a bubble and protect them forever, but wouldn't it be nice?? :)

Happy 4th Birthday Ethan!!

Yes, I know, not the picture of 4 year old happiness and bliss...but as any of you know who have or had 4 year olds...it isn't always easy to get a good picture these days. Needless to say, he was all smiles after the picture!

Oh my little...I'm sorry...BIG guy has become a 4 year old. Mike and I cannot believe 4 years have passed, today, since we brought this monkey into the world!! :) We would never have guessed four years ago that we would be celebrating his birthday in John Deere style. We would never have guessed that this would be the first birthday that we celebrated completely gluten free. We're so happy though, that we've made it this far and are capable of providing him with such a wonderful day. He kept saying throughout the day how happy he was. Of course that was just before and after saying, "when will everyone get here so I can blow out the candles and eat my cake??"

For you see, this is the first cake Ethan has been able to consume after blowing out the candles. Every party we've been too, (except for his friend Zachary's a fellow Celiac) we've brought gluten free cupcakes with us so that Ethan can "have his cake and eat it too!" Never has he complained about it. He doesn't even ask to eat the "other cake" because we are always prepared. I can't tell you the level of excitement on this little guys face when he saw his gluten free cake. He talked about it all week and even mentioned a couple of times that he wanted to share it with all of his friends because he could. He just stared at this cake from the moment it arrived. No, I didn't make it. I used to make the kids cakes, and loved every minute of it. But since I found this wonderful woman through our church know as "The Cake Lady", we've had her make our cakes. This was her first gluten free cake and she was more than willing to make it specifically as it needed to be made. It was delicious.

Everything on the table was 100% gluten free. We had meatballs, chicken wings, chips and salsa, a spinach and artichoke dip, and a veggie plate. It was so nice for me to not have to worry every time I saw my children chewing on something I didn't give them. Especially with so many people around. I have to say though, that just about everyone that was present I would trust my children's diet to anyway...but I digress.

Needless to say, it was a John Deere/Thomas the Tank Engine birthday. Ethan's two passions together in one party, he didn't know which gift to play with first. I have to say that Pepe's gift was a big hit...a rather large John Deere wagon. Ethan insists that the weather is just fine to take it for a little walk outside. I insist it won't happen unless we get chains for the wheels so it can handle the snow, or Mommy is the one that gets inside for a ride!!

He just loved every gift he received so much, that he ran off wanting to play with it, not realizing he still had more gifts to open. I have to say though that I was very proud of the way he did gifts this year. Mike and I had discussed that we really wanted to make sure he slowed down, opened cards, and took the time to thank the people he received the gift from. It worked! He just enjoyed every minute of it, and that night when he went to bed I asked him what the very best part of the day was and he told me "all of it, especially the cake!"

Happy Birthday to you our little man! We love you!

Christmas Lights

Hey it's Mike. I know I know I haven't posted in a while. Sorry about that, but Michelle has been doing such a good job I did not think that I could improve upon her posts. Plus she knows how to put pictures up and I still don't. Good thing I'm the computer expert in the family!

Anyway last weekend I spent Sunday afternoon setting up our outside Christmas lights. I left Ethan and Joshua inside because being up on the roof and a ladder I did not think they could help. Plus I might fall on them, which in the end would be a bad thing. So I proceded to put up lights on the house and the bushes, and finally the moving deer (John Deere and Jane Doe as Ethan and I decided later would be their names).

So after all the lights were up I brought the boys and Michelle out to see the "official" turning on of the Christmas lights. I let Ethan push the button (we have a cool little remote) and both the boys faces were priceless. Ethan was excited that we had decorated and Joshua just giggled. Very cute they both sat there gazing for a moment taking it all in. It was worth every minute.

Ethan is getting old enough to enjoy Christmas, it's nice that he's getting older and really getting into the Christmas season.

So next weekend is the tree and the inside decorations!

I'll let you know how it goes and maybe post a picture or two.

Medicines, Doctors, and Tests

The boys had there check up with Dr. Hofley on Friday morning. It was rescheduled for that time because the doctor canceled due to illness earlier in the week. We were hoping it would work to our benefit, and that a little Thanksgiving dinner would help "buff up" our boys. No such luck.

They seem to be stuck exactly 10 lbs. apart from each other. Joshua weighed in at 18 lbs. 13 oz, and Ethan was 28 lbs. 4 oz. Okay so not exact, but close enough. They each grew slightly in the height department, but not enough to really mention. To Joshua's credit, he did have that nasty ear infection and didn't eat much for close to a week. Even now he still isn't eating much. Of course he's also a picky toddler who is now walking around everywhere burning off all of those precious calories. Ah timing.

As for Ethan the doc thinks he's hit a medicinal plateau. He's been on cyproheptadine for quite awhile now, and has most likely built up a tolerance to it. So, we are to take him off of that for a week every two months to help jump start his system. We will keep him on his Prevacid, because when we tried weaning him of that, his stomach started hurting him again. However, we have been given the okay to try weaning him off of the Pepcid. It would be nice to get rid of one of his meds. The other medicine he's on, glycolax for his stools, we have also dropped down on the dose. We were at 3 tsps a day, and now are at 2 tsps. a day. We have to help his body's musculature get used to pushing and doing what it was designed to do for waste removal. As of right now, the medicine does all the work for him, which may be why we still haven't been able to potty train him. His body doesn't know how to function properly yet, so he certainly won't be able to figure it out until it does. It's become quite clear to us what a slow process this has become. If you do the math, it means three in diapers in just a few more weeks...not exactly what we were planning...but hey such is life.

We also discussed what to do as far as any testing for the new baby. The doctor feels it would be silly at this time to do any testing on her until she is older simply because it isn't going to change what we will do with her. We plan on keeping her gluten free, so other than statistical reasons, there really isn't any point to it. Besides all Joshua had was the DNA test which was negative, and yet he's had some gluten issues. This is why I love the boys' docs. They keep it simple, and only do what is in the best interest of the child and the family. It's comforting to know my children's health is in good hands.

The good news is we don't have to go back to see her for 3 months this time. Which works out well because Ethan's 4 yr check up and Joshua's 18 mos. check up are in January, so they still get their weight checked on in between. There's always someone keeping track of where they are health wise, which is nice. It's also nice that those checks are getting fewer and farther between. What will we do with all that spare time......???:)

Last Week

Last week was a very looonnnngggg week. Between the bad weather, sick children and sick mommy, we were stuck indoors trying to make the best of it.

Joshua took the brunt of it. He had started the weekend before with a moderate fever, cough and runny nose. Plus he just wasn't sleeping...correction....he wasn't sleeping by himself. He prefered sleeping his cold away on mommy or daddy. Which I have to say it's kind of sweet to have that snuggly, very warm body on you, it's just sad that he has to be sick to be there.

Anyway, we had been in contact with the docs over the weekend because Josh just wouldn't stop pulling on his ears. We all thought it was because he is teething...two 1st molars coming in on the top...ouch! So, the doc called in some numbing ear drops. Well, let me tell you, we had a different kid that Sunday. He was smiling, laughing, eating, etc. We thought we had it licked. Well the doc still wanted us to go in on Monday to have him checked out and good thing we did. The poor kid had a double ear infection. One ear was pretty severe, the other one on its way. And due to the fact that he'd had a mild fever all weekend, and a low fever that day, they decided it best to put him on amoxicillin.

As you can see, he was a pretty sick little guy. He never sits that still in the bean bag chair to watch his favorite Veggie Tales, (A Snoodle's Tale). He's usually up dancing to the music.

It is amazing how quickly kids recover though, because even later that day, he was up walking around and playing with his brother a little more.

It wasn't until the next day that we noticed a positive change in his health. He let his brother "decorate" him for the "John Deere Festival of Lights Parade". One of Ethan's passions would be anything John Deere. He knows everything about all of it. So, needless to say he has Part 1-Part 4 of the DVD's that talk all about John Deere. On one of those DVD's they show a parade that John Deere participates in every year for Christmas called the Festival of Lights Parade. They completely cover some of their biggest tractors in lights and parade down the street in competition for first place. Well, Ethan decided that to cheer his brother up, he would decorate him for the parade. This was their "float" all decorated with cars, trucks, and peek-a-blocks. Then Ethan pushed him around. Josh got a kick out of it.

So, that brings us to Wednesday of last week. Right around the time that mommy started feeling the effects of no sleep because of sick children, 3 rd trimester woes, and her case of this head/chest cold coming on.

What is the best game that two loving children... who care only about letting their mother rest and recoup from all of this...play? None other than the very loud game I like to call Dump Truck Derby. Here are the rules...you must run as fast as you can while pushing the truck, you must be as crazy as you can while running fast and pushing the truck, you must crash into as many obstacles as you can while being crazy, running fast and pushing the truck, and most importantly you must make as much noise as your body allows you to while doing all of the above. Bonus points for knocking over or running into your little brother to make him whine or better yet, cry! The game is only over when one or both of the contestants have decided to move on to another game. Yes, it is pure chaos. Yes, it is loud and hectic, especially when the referee...mom...has to determine fair play throughout due to the younger less agile of the two playing. But, oh my goodness do they have fun. Plus, on a rainy, cloudy, yucky day, when your stuck inside, what better way to burn off some energy!!

Onto Thursday. It was a good day, but it was a sad day. We finally found a home for Moose. Thanks to many of the contacts we've had through the vets office, we were referred to the Greater Derry Humane Society. They are a no-kill group who do not have a facility which they work out of. All of the animals are kept in foster homes until a permanent loving home can be found for the animal. So, on Thursday afternoon, we drove Moose out to his foster home in Derry. They are a very nice couple, and Moose took to them right away. I knew I would be upset when it was time to go, so I was thankful that Mike was with me. As we suspected he didn't even realize we'd left him. We've been in contact a couple of times so far, and Moose is doing awesome. He's getting the exercise and attention he so despertely needed, and is making great progress in his house training. We hope to hear he'll be adopted soon, but are comforted in the fact that for now he is in a loving environment until then. It has been a sad relief to not have him around. Sad because we so desperately wanted the companionship of a dog, but a relief because other than when we were sick at the beginning of the week, we again just haven't been home. That's not a great way to raise a puppy.

On Saturday Josh and I cleaned and disinfected the inside of the house, while the other two men...Mike and Ethan...tended to winterizing the outside of the house. It was a very busy day but we were able to get a lot accomplished, since everyone was feeling a little better.

After a long week of sickness, restlessness, a serious lack of sleep, and the disheveled state of the house, it was nice to sit back and relax on Saturday night in the mostly cleaned and picked up place we call home.

Celiac Testing

Recently, a number of people have asked us what kind of testing we've had done to ourselves for Celiac Disease and why. So, here it is:

Michael:
Symptoms: Unexplained liver function issues, high blood pressure, rising cholesterol, inability to lose weight and/or keep it off, and of course his son tested positive for the disease.
Tests: Antibody test...negative for Celiac, endoscopy...negative for Celiac, hasn't had the DNA test done yet.
Results: Decided to go gluten free because it's easier to deal with in the house for meal time, and with a picky 4 yr. old. Now, he has found that if he does consume gluten, within 24-48 hours he will have moderate to severe cramping in his stomach and intestines, headache, and generally won't feel well.

Michelle:
Symptoms: Depression, episodes of unexplained constipation/diarrhea, headaches and migraines, allergies, and my son tested positive for the disease.
Tests: Antibody test...negative for Celiac, DNA test...positive I have DQ8, haven't had an endoscopy done because of pregnancy. Probably won't have it done because I have been gluten free since May of this year.
Results: Decided to go gluten free for the same reasons as my husband and have also found that when I consume gluten I will also have moderate to severe pain in my abdomen followed by very loose stools. Usually mine will happen within 24 hours though.

Ethan:
Symptoms: Unable to gain weight, wouldn't eat, complained of stomach pain, severe constipation, had the "celiac body" (big belly, no bum), started to lose weight prior to diagnosis.
Tests: Antibody test...borderline for Celiac. (We later found out that he should have been confirmed at that test because the numbers were considered at the low end of the positive for the disease) DNA test...positive he has DQ8, endoscopy...positive for Celiac.
Results: He has been gluten free since his diagnosis on February 3rd of this year. We are just beginning to see changes in his health. Still very slow weight gain, however he finally has an appetite. He's just a very active preschooler who burns off a lot of what he consumes. Due to the severe lack of nutrition for a good portion of his developmental years however, he is having some developmental delays that are now being found in many children his age who aren't diagnosed early enough...(say 12-18 months of age).

Joshua:
Symptoms: constant irritability after eating, unable to be content after a meal, slow weight gain.
Tests: DNA test...negative for the gene related to Celiac.
Results: Because of Ethan's history, we (the doctors as well as Mike and I), have decided it is in Joshua's best interests to keep him gluten free until he is 6 or 7 years old, due to the developmental milestones that children go through at these young ages. At that time we can then decide to put him on gluten for 3-4 months and see if he has any reactions as well as follow up with the rest of the tests.

Baby #3:
We'll follow the same with this child and any other children we may have as we are currently doing with Joshua.

Fortunately when it comes to our children, we have some of the best docs taking care of them. They are willing to do tests, and go the extra mile to find out what's wrong and make it better. Unfortunately, we've found, that when it comes to adults, docs aren't quite as...well...willing to test for, never mind diagnose this disease. From what I understand from other adults who are fortunate enough to find a good doc, things are changing. We just aren't so sure that we would be willing to put ourselves through a "gluten challenge" now just to get another test done. That would consist of consuming gluten for about 8-12 weeks! We already know what are bodies feel like after one meal of gluten, never mind a couple of months!

So, there it is.

R.O.C.K. Success and Thank You!

We had our very first R.O.C.K. support group meeting this past Friday. What a great night! We met so many wonderful families. I can't explain to any of you how amazing it was to see so many people going through similar issues that we have gone through. Some of the families there have been dealing with Celiac for well over 10 years. Others, like us, have only been diagnosed this year. We all have so much to learn and teach to each other. So, many children long for friends who they can share this disease with. Mike and I couldn't be more thrilled to have been able to provide this opportunity for everyone.

Mike and I will continue to organize more meetings, and events for the group and anyone else who would like to join. If interested you can always post a comment to this site, and I would be happy to give you the R.O.C.K email and website information.

As for the thank you part of this post...
Mike and I just wanted to say thanks to those of you who have called us, spoke with us, and even those who posted anonymously on our last post, in support of what we are doing. It has been no easy task, and as of yet we haven't found a home for Moose. He is still being treated as a part of our family, unfortunately it does mean a lot more kennel time for him. In turn, we've seen a slight improvement in Ethan's behavior since he can have run of the house again. Even Joshua who doesn't have any developmental issues, (just low weight gain and he's on a gf diet) finally began to walk. As time goes by it will certainly be harder to give Moose away to someone, but we still both believe it will be best for him as well as us. Was it a mistake? At the time, no. How could we have known what the future would hold for us. Especially with some of the new developments in Ethan's behavior. No one could have predicted it. Had we known, we most definitely wouldn't have invested our time, hearts, and money into Moose. It wouldn't have been fair to anyone. You live you learn...time to move on.

Hard Decisions

We just love those two little faces. That day was a great day. The weather was perfect for a drive so we went up to the white mountains. Upon seeing not one single cloud in the sky, we decided to drive up Mt. Washington, something Mike and I had both done seperately, but we've never done as a family. What a sight. Breathtaking doesn't begin to describe the absolute beauty that God placed at the top of that mountain.

It was chilly and breezy and the entire time Ethan kept shivering...loudly...but between the fesh mountain air, the bright sunshine, and my family surrounding me, this picture puts everything into perspective.

We can climb any mountain that stands in our way.

The most recent mountain is one of the main reasons why I haven't been able to post lately. Other than the normal day-to-day business of life, we've run into a few mountains that have been more difficult to see around much less climb. Because of this Mike and I spent most of last night making a very difficult decision.

As most of you know, we added to our lives the insanity known as Moose our Red Bone Coon Hound. He is currently 15 weeks old, almost 4 months, and come to find out he is developmentally delayed. In other words, he should have some of his adult teeth coming in by now, and he has none. He shouldn't be having nearly as many issues with house training as he is at this point. He's incredibly smart when it comes to the obedience commands of sit, and leave it and stay...somewhat. But as of late that mountain I was telling you about has come into view.

Ethan has been...difficult to say the least. We have noticed changes in him that have become very difficult to deal with on an hour-to-hour basis, never mind day-to-day. He needs much more one-on-one time than I've been able to give him, and in combination with some new developmental stages he's going through at this time, has become very difficult to discipline. He has begun to show fears to things that have never bothered him before. For instance, he is very concerned about where the phone is at all times, and needs it to be blocked from his site if it rings. When it does ring, he yells throughout the house "mommy the phone is ringing", and if it is in reach will bring it to me immediately so I can answer it and make it stop ringing. He will even make sure it is where it belongs upstairs in our bedroom before he goes to bed at night.

Joshua is going through this same stage, except his sudden fear is for the bathtub. He can't wait to get into it, but as soon as his little feet touch the bottom, he's scrambling to get back out. These are normal stages for children to go through. We were told that Ethan may hit some of these stages now that he's feeling better, because he didn't hit them when he was supposed to like Joshua is. However, these stages are coming at a time where a soon-to-be four year olds mind has already developed. His emotions and outrages are quick and intense. They involve his whole entire body, and you can tell from the look in his eyes that he doesn't know how to stop it. We just have to squeeze his whole body tightly to ours while whispering to him to relax and breath, until it passes. Some days it is easier for me to deal with than others. Being 28 weeks pregnant and incredibly hormonal, some days I'd like to flip out like he does.

Having said all that, what could be our difficult decision, our mountain to climb? Well, we've decided that we simply cannot divide our one-on-one time between our children, one of which needs physical activity, yet less stimulation...and our developmentally delayed puppy. We need to find a new loving home for Moose.

I didn't sleep at all last night, not so much because I doubted our decision, more because I'm concerned about the damage that may or may not have been done. Every Mom out there worries at one time or another if they are doing everything right for their children. Do we discipline enough or too much? Do we yell all day every day, or do we give in to our children's every whim? Parenting is tough enough. Raising a puppy is challenging enough. Trying to do both when both need special attention and time from one person throughout the day...I just don't have it.

So, for our children's sake we will find a new home for Moose. One where he can have the attention he needs to become the best pet he can be. One where neither he nor Ethan will become so overstimulated from each other that neither one of them can behave...(urinating all over the house/throwing a major emotional meltdown) Unfortunately it won't happen in this house.

If anyone knows of a loving caring home, preferably one without young children that would love to adopt our Moose please let us know. We don't want him to just go to anyone. We love him, and will miss him in our lives, but know that he will be much better off with a family that can give him the attention he needs.

R.O.C.K.

With so many things going on in our lives...we decided to add one more. This one however will benefit not only our family but many others who are going through similar situations as ours.

R.O.C.K (Raising Our Celiac Kids) is a support group chapter that was started by Danna Korn. She is a well known author of several books including Raising Our Celiac Kids, and Living Gluten Free for Dummies. This support group is recognized nation wide, with many chapters located within states across America. However, the closest one to us is in Connecticut I believe.

We'd love to meet other families with children close in age to ours or have gone through some similar situations. So, in talking with Dr. Hofley, (the boys GI Pedi) we discovered that a support group was in desperate need. However, Dartmouth Hitchcock's CHAD department just doesn't have the manpower to organize it. Enter Mike and I. We contacted Danna Korn and for a one time registration fee of $30 we are now nationally recognized as the ROCK leaders in New Hampshire, (and New England as well).

We have set up our first meeting for November 3rd at the Dartmouth Hitchcock clinic as they will help support us with rooms for meetings, mailings, and anything else we need to help keep the support group going. The response so far has been amazing. We receive emails and phone calls every day from people who want to come and are very excited about it. The room we've reserved only holds so many people, so if we end up needing more room we'll see if we can change the room size. At the rate we're going, we may have to.

Basically the meeting's will be unstructured. We'll have a Registered Dietician who represents Elliot Hospital and Hannaford supermarkets here in Manchester. Dr. Hofley will also be there as well as the possibility of several other medical professionals. We are trying to see if Trader Joe's will supply us with lists of the gluten free food choices as well as several samples for the guests to try. After all this food isn't always cheap and for those of you with toddlers, it doesn't matter how much the food costs, you hate finding out after you bought it that it's not pleasing to your picky little eater...gluten free or not!

The meeting is open to anyone who is interested in or currently living a gluten free lifestyle. We hope to share recipes, ideas, stories, suggestions and support to one another as our children and our lives continue to change daily with regards to what we can and can't eat.

If your interested in attending any of the meetings please feel free to post a comment to a current post, and I can send you my the ROCK email and website information.

Moose

Most of you may think of the large easy going mammal that lives up in the Great North Woods of New England. Large rack of antlers, big, furry and cow like as they mosey along their way. No real predators to deter them, and of the ones we see no real concern for the passing motorists. (Hence the reason for so many being killed in the roadways!)

However, there is a new Moose in town...


...introducing Moose our (now 11 week old) Red Bone Coon Hound! He is purebred, AKC, UKC, champion lines, blah, blah, blah. More importantly he is a cute puppy who is not only a great addition to this family, but yet another challenge to my sanity!

Why would a 23 week pregnant mom of two very active boys decide to invest time, energy, (and money) into this little guy (18 lbs. now but will get to between 55-60 lbs.)????

Well, several reasons.

First, we've accepted the fact that we will be in this house until the spring at least. The house market is just dead, and we've had absolutely no bites on ours. So, my husband decided he would feel better, especially during our sometimes long winter months, if we had a dog around as an added bit of security and companionship. That's why we got the puppy now, hoping that by the time Rebekah comes along, he will at least be a potty trained, if not a well established member of our growing family.

Second, is because of Ethan. When he was about 2 or so, he got knocked over by a little dog that wasn't trying to hurt him, just play. He never forgot that, and since then has always been very nervous around any size dog. Although, he does seem to do better with larger older dogs. So, we figured what a great way to help desensitize him to his fear of dogs, but at the same time teach him to respect them as we certainly don't want him to get knocked over again.

The other great thing is that Moose and Ethan have the same energy level, temperament, and lack of impulse control. (I'm pretty sure though, that the dog will be housetrained before Ethan is potty trained). As you can see they can play together nicely. Ethan loves to play "tugger" with Moose, which is basically a game of tug-of-war. It's actually a great workout for Ethan's upper body muscle tone. He gets tired really quickly...usually about 30-45 seconds! So, it will help him to develop some of that upper body strength he needs.

They also get each other wound up, and that's when one or both of them get into trouble. The difference is that Ethan will just stomp off all offended when I tell him to stop and take a break. The dog goes under the table with his tail between his legs, leaking pee the whole way like we're going to beat him. The vet says this is normal for the runt of the litter. He had 8 brothers and sisters and was most likely low doggie on the totem pole. So, if we raise our voices he cowers. He should grow out of it once he becomes more comfortable in our family. Unlike Ethan who challenges me every step of the way, knowing my bark is a lot worse than my bite!

So, there you have it. Some people have called me crazy, insane even. Well...their right! However, my husband is sleeping better at night, my oldest is getting a good upper body workout while learning how to respect animals, my youngest is learning how to squish low to the floor to protect the belly from the "ggie" (that would be doggie), and I'm beginning to appreciate how much easier it was with just the two boys before we had the dog!!! What am I going to do when the new baby comes along???...get frustrated, cry, be aggravated, question my sanity...but most importantly love my growing family as each child, (and animal, yes we still have Kitty Spice), most blessedly deserves. After all, I'm crazy in love with all of them!

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.

Still Trying

Well Ethan is still trying our resolve.

He is challenging us to find new ways to get him to eat/drink enough calories. What isgood one day is not the next. So we are at a loss at times as to what the little guy will eat. You can be assured that whatever is on our plate he will want. Alas it is a small victory he will eat 1 maybe 2 bites and be done with it.

So we are still looking for foods that he will eat on a daily basis. Heck I'd take the same thing everyday as long as he eats. What else is funny is that some days he will do great and others no so well. He just needs some sort of consistency.

Well enough of that, Joshua is eating like it's going out of style. So 1 out of 2 is pretty good!

Will keep you updated.

.mike