Hospital Free Weekend

Mike here, just so you know. (Side note to Michelle: please feel free to insert pictures as you see fit. Seeing as I am writing this from work.)

Anyway we had a good weekend. No children were in the hospital. Got some amount of sleep and I actually got out to see a movie with my brother. Can't tell you the last time we did that. Oh by the way 300 is an excellent movie - just not for the kids.

We went for a family walk on Saturday and Ethan and to a lesser extent Joshua played at the playground. Giving me a mild heart attack all the while. Ethan is a little monkey and was climbing up and jumping across bars, slides and ladders. Which is exactly what he needs but made me a bit nervous seeing as he did not always pay attention to what he was doing. But he had a blast never the less.

Then there was Joshua coming out of being sick for three or so weeks sat in the wagon and ate everyting in sight. His brother was not around so he was taking full advantage of the peace and quite to eat. He is his father's son after all.

Then on Sunday my cousin came over to watch the boys while Michelle, Rebekah and I went to Mass and Barnes & Noble. Traveling with one baby seemed extremely easy, don't know why it seemed like work the first time around.

All in all a good weekend.

Now only if the weather would match the calendar.

later
.mike

In Like a Lion

My big guy has had an interesting month. He has BEEN the lion. Being the oldest he is use to getting a lot of attention. Mostly because he can speak so well, and enjoys carrying on a conversation with almost anyone who is willing to listen and converse back. However, between his new little sister, and the illnesses that Joshua has been dealing with, a lot of that attention has been diverted...and it shows. Ethan has still been receiving attention, unfortunately it has been negative attention. The trouble this little man can cause is amazing. It's been impossible though to make sure that Ethan gets the playtime, "mommy time" and "daddy time" he's needed, with a very sick little brother, and a new little sister. We were doing pretty well before all of Joshua's illnesses...not so much now.

Then, of course, there is Joshua. He looks pretty happy here...that was last month! He is sick yet again. This time he has the stomach bug. He had been home for two days, and woke up Friday morning having vomited all over his bed. He continued with that for the rest of the day, and has since been clingy, irritable, and very sensitive to everything going on around him. The poor little guy has been sick for 20 days as of this past Sunday. (This whole thing started Sunday night Feb. 25) He just can't seem to catch a break.

Now, this morning, he woke up at 5:30am covered in spots!! He has a moderate fever, and is absolutely miserable. We will be going in to the doctors this morning. They think it might be a delayed reaction to some of the meds he's been on. I hope so, this poor little guy needs to get better!

Lastly, we have Rebekah. She has been an angel of a third child. Unfortunately her days are spent either in her carseat or in the bouncy chair at home, but to make up for the lack of attention, she has been sleeping nights in our bed. We couldn't have asked for a more "go with the flow" child. She will let anyone hold her, (unless it's feeding time!) and has proven time and time again that she is ready and willing to adapt to her surroundings. Thank God for that. Most of her pictures though will be like the one above. Well, at least she has some pictures right?? :)

We have definitely had a rough month, but as the saying goes "In like a lion and out like a lamb", we'll see!

A Powerful Virus...and then some

So, we move on to Friday. Joshua had a rough night...so did Mike...he just couldn't sleep with all of the coughing. Since we made the executive decision that Ethan should go hang out with another family for the day, we called his Aunt and Uncle to see if he could stay with them for the day. I had a feeling the day wasn't going to be pleasant...I had no idea we'd end up in the hospital!

Joshua would just follow me around the house, sit down wherever I stopped and just moan. With every breath he would moan and cough, constantly. That and play with his ears. We've come to the conclusion that unlike his brother's attachment to a blankie and kitty, Josh is attached to his ears...literally. He plays with them to comfort himself.


I decided to help get him to sleep I would take a drive. He always falls asleep and sleeps well in the car. So, I fed and placed Rebekah in her car seat. When I turned around expecting to find Joshua behind me, I saw him in the playroom, curled up on the bean bag fast asleep.

About 45 min. later he woke up, not feeling any better, so we went for that drive.

He slept for another 15 min. but when he woke up, didn't look right. I drove over to Mike's work to get another opinion. We called the doctor because he just didn't seem right. This is when my mother's instincts kicked in. I wasn't sure he was bad enough to go to the ER, but at the same time, he wasn't looking so good. He was all one color...very ashen...and his breathing was incredibly rapid. He seemed to be struggling. Instead of waiting for the doctor to call us back, Mike took the rest of the day and drove us over to the office. I walked in with him, and with one look they brought him into the treatment room to check his stats. His oxygen levels were at 76%. They should be between 92-100%. Then they decided to listen to his breathing and when he started to cry, his O2 stats went up into the 80's. So, they put him on oxygen and then gave him a nebulizing (sp?) treatment. He practically passed out.

At this point I have to say, although we were worried, we didn't think we would need to go to the hospital. The staff at Pediatric Associates did such a great job remaining calm throughout the ordeal, that we were surprised when the doctor came in and said "You've probably guessed by now that we will be admitting him to the hospital."

So, over to the Elliot we went. We checked in on Friday the 9th and didn't get discharged until Tuesday the 13th! It was a very long weekend.

My poor little guy was just struggling so hard to breath. They couldn't determine if it was asthma or if it was just a virus that had settled and caused the extreme inflammation in his lungs. Not that it really matters because the treatment for either one is the same. They don't like to diagnose asthma under the age of 2-3, so they diagnosed it viral.

Mind you, he was treated for walking pneumonia as well. We had gone in to the office on Tuesday the 6th for Rebekah's well visit, and the doctor was very concerned with his cough. She took a listen and said that he now clinically sounded like what little bit of something they saw on the xray from the previous week. She felt it would be best to put him on antibiotics for pneumonia.

The poor little guy, although weak from the endless coughing, difficulty breathing, and very little sleep, was incredibly strong when it came to fending off the respiratory nurses...his arch enemies! They were extremely nice and patient with him, even though he learned how to use his IV arm as a weapon. (That little board under his arm to keep him from bending it, hurts a lot when he bops you in the head!) He got to the point where if they even poked their heads into the room, he would bury his face and start crying. Even in a dead sleep, once they turned the nebulizing machine on, he would wake up and immediately start crying. Who new that breathing in all that oxygen and medicated steam could be so traumatizing? Apparently it was because he cried through every single treatment. (We think that may have been one of the reasons why it took so long for him to get better. When he would cry, the medication wouldn't get inhaled properly. So, that's why they decided to put him on IV steroids to see if they could attack the problem from the inside as well, and try to make his lungs less inflammed.)

Even with his regular nurses, he would wave his arms and cry if they even tried to touch him. He had his little bubble around him, and if they got too close he would say "no no no no" and try to fend them off. Thank God they have a lot of patience, kindness, and perseverance, other wise we'd probably still be there!

Over the course of those five days we learned many things. We figured out that a Daddy is great for comforting when the Mommy isn't around, but the minute the Mommy shows up, the Daddy no longer exists. I found out how heartbreaking it is to leave one of my baby's behind at the hospital crying "Mama", so I could go home and take care of the other two. Mike found out how hard it is to get Joshua to rest when all he wants is Mama and not Dada all night. We were also reminded at how very blessed we are to have such great family and friends to help us out during such a difficult time.

With many thanks to Dan and Lori for taking Ethan all weekend, Friday through Sunday night, including an overnight, (even though you managed to lose him...in your bedroom!:), we couldn't have both been there for Josh and each other with a 4 year old running around the hospital room.

Thanks to Terrie, Norma and Deb for bringing yummy, hot food, coffee, and strong, caring arms to hold on to Rebekah so I could use my arms to hold onto Josh, and we could actually eat something besides veggie chips.

Thank you to Sherry for taking Ethan during the weekdays so that we could again be there for Josh, and handle the discharge from the hospital with all of the many directions and uses of the medications he would be on.

A great big thank you to all of the nurses, doctors and staff at Elliot Hospital. They were all great at keeping us updated, calm, and cheery despite the circumstances. Thanks to their hard work and dedication we were able to bring our little guy home safe and sound.

And thank you to everyone else for your thoughts, phone calls and prayers. You helped keep us connected to what was most important...our family.

Needless to say, we weren't the only ones who were glad to be home. Joshua was like a whole new kid. Even the last two days in the hospital, we could tell he was getting back to himself because he was becoming restless in the bed. We let him walk around a little in those cute little jammies they put on him, but it wasn't enough. Who could blame him. The only reason they were keeping him those last few days was because when he would inhale, he would still retract enough that they were concerned about a relapse if he went home. Come Tuesday morning though, with no retractions what so ever, we were discharged from the hospital with strict intstructions on nebulizing every 4 hours over the first 48 hours, and then once a day for the next two weeks.

We didn't care though, no matter how much work and how little sleep we were going to get, we were all just happy to be home.

A Powerful Virus

A little over two weeks ago, our family came down with some sort of virus. You know the one...cough, runny nose, irritability, cranky, fussy, and tired.

Well, Josh got the worst of it. He ended up with a moderate fever for most of the first week. It got to the point where it spiked up to 104 degrees and he was brought into the ER for a chest x-ray to check for pneumonia.

A little bit scary...for me because I couldn't go with him. Not because I don't trust my husband with him...far from it...but he's my baby and I wanted to be with him. Unfortunately the ER isn't the place for healthy infants, so I stayed behind. The good news is they came home with a positive report that his lungs looked fairly healthy. That was Wednesday the 28th of Feb. However, if his fever persisted through Saturday we were to come back in to have him evaluated again.


Well, needless to say, the fever went away Friday night, but the cough persisted. My poor little guy was just exhausted from coughing so much. He was falling asleep where ever he could. Well, at least where Ethan wasn't around. (Thank God for that train set upstairs!)


I wasn't too worried yet, because the fever left, and from past experience I knew coughs could hang around for weeks. Plus, for those of you who know Joshua, he can be...well...irritable and ornery whether he's sick or not. Makes it a little tough to tell the difference between not feeling well, and just being ornery!


We knew something was up though when he didn't even want the camera around. Mike couldn't get him to smile for anything!

So, on we went into the following week with a very irritated boy. Not to mention that for anyone who has either had a bad cough or been around someone 24/7 who has a bad cough, you know how irritating it becomes for the non-cougher to constantly hear that sound. Needless to say I was becoming quite irritated myself with the endless cough. Then you add in "mother's guilt" because I was also losing my compassion...it was a very long illness...and it was only going to get worse!

Communion

As in receiving communion during mass at our church. Mike and I up until a few weeks ago have still been receiving communion at our church. We are devout Catholics and felt it important to still take communion even though it contains gluten. Mike hadn't noticed any real difference, (although I swear he acted differently when he went without), but I most definitely did. Within that day and over the next few days I began to feel the effects. Crampy, gassy and bloating...that's just to name a few without going into disgusting details. I hadn't noticed these issues while I was pregnant. But it certainly could have been there but showing itself in the hive issues I was having.

I had asked Mike to get a hold of our priest to discuss what we should do because I would just go up, and as discreetly as possible make a bee line for the wine, avoiding the host. Not really the Catholic thing to do. I felt guilty, and empty not being able to receive. As Father Marc later said when we spoke with him, "The Body of Christ shouldn't make anyone sick!"

Come to find out, Father Marc was already in the process of ordering these special low-gluten hosts for the parish. There are two other people who have requested them as well. He referred us to this website: http://benedictinesisters.org/english/site.php to see what it was he was offering us.

According to the information:

"The Celiac community’s response to us... Since we began selling these breads we have served over 2000 celiac sufferers. We have had only positive feedback from those who have tried them. Our low gluten altar breads were featured in an article in the magazine Gluten-Free Living. The editorial and accompanying write-up cited data from the Center for Celiac Research that showed that the 0.01% gluten content of our breads would be perfectly safe for most celiacs. The article states

The measurement cited here, 0.01%, represents 10 PPMs (parts per million). But the more important number is 37 micrograms, because it is daily exposure to gluten that counts. The best current information shows that 10 milligrams a day should be safe.
Ten milligrams is the same as 10,000 micrograms. If you divide 37 micrograms into 10,000 micrograms, you will find that you would have to eat 270 wafers every day to reach the danger point. At most, celiacs would consume one wafer per day or about 0.04% (four tenths of one percent) of the amount considered dangerous."

The one downside, at least from Mike's point of view, is how we have to go and receive this special host. Because of cross contamination possibilities, our hosts are placed in a separate pyx so they can be consecrated during mass when the rest of the hosts are. However, because they use their hands to give them out, we would have to be the first ones to go up and receive. That's right. As soon as the priest comes down from behind the altar, we have to walk right up to him and receive our hosts before the rest of the parish goes up. This means we need to sit closer to the front of the church...with three children...who don't sit still...who don't stay quiet...and who most times gather many looks from the other people who are trying to LISTEN to the mass. Oooopppssss! :)

So, we will see if we have a reaction. It didn't taste bad, in fact it reminded me of a Cape Cod chip without the salt. We just don't know how sensitive we are. Ethan is still a few years away from receiving his First Holy Communion, so we'll see what will be available to him then. For now it's a step in the right direction. It's nice to see the Catholic community doing what it can for those of us with this disease, so that we may be able to participate in the most sacred part of our mass.

Her Big Day...and we had cake!

Yes, it was Rebekah's big day. On Sunday we had our daughter Rebekah Simone Ouellette baptized at Ste. Marie's Parish in Manchester. It was a beautiful ceremony with the whole congregation, family and friends to celebrate.

Ethan was very excited because although he hasn't been a big fan of going to church and praying to God, (more like not enjoying the hour of having to sit still in one spot), he was looking forward to seeing his sister "bathtized" like his cousin Jack was a few weekends ago. I tried searching in vain for pictures of Ethan's baptism, unfortunately a lot of those things are still packed up from when we had the house on the market. He was confused as to why he couldn't be baptized again, and wanted Joshua to take a "bath" up there as well.

More importantly...in a 4 year olds world...there was cake. We have a friend from our church who is known as the Cake Lady. She has been making cakes out of her house for quite some time now. Before we started eating gluten free, she made Joshua's baptism cake, and we were blown away by not only the beauty of the cake, but the taste as well. Incredible! So, when we had a change in our diet, I was less than thrilled that we would have to find someone else to do it for us, or (gasp) do it myself! (For those of you who don't know, I love to bake and cook, but with everything else to do in prepartion for a party at one's own house, it's just easier to have one less thing to think about!) So, I talked to her about cross contamination etc. and told her what kind of cake mixes to use as well as discussed what goes into the frosting, and we've worked everything out. This cake was huge, four Namaste cake mixes, but knowing it wouldn't all get eaten, I was able to freeze a reasonable size of it for use at other parties. I am a planner by nature!:)

Throughout every part of the day...church...the drive to and from church...the whole morning prior to going to church after the cake was delivered...a frantic voice could be heard asking if it was time for cake yet. We have to give the kid credit, he did go through all the motions required of the big brother...

He sat for some really great pictures.

Then there was the party girl. It was tough to get her away from the protective older brother. He needed to know where she was at all times. Let me tell you, he didn't like to hear her cry. Every time she did, which was often, (hey you would too if you were wearing that beautiful yet itchy and hot gown) he would tell me it was time to change her into her princess dress.

The pink in the dress was so beautiful. I can truly appreciate this color now after having two rough and tumble boys. Plus, seeing her laying next to her "older" (by two months) cousing Jacob...aka Jack...I just can't get over how feminine and dainty she looks.

All in all it was such a beautiful day. Thank you to everyone who came to the church and back to our home later, to celebrate God's little blessing.

Rebekah, sweetheart, you are loved by so many friends and family members, but no one loves you more than Mommy, Daddy, and your two big brothers Ethan and Joshua. God Bless you little one.

BackTrack Part 2

So much to catch up, so little time. I feel like we've had so many balls up in the air, that for us to catch any one of them at anytime, would be beyond amazing.

To say that Ethan has had the works when it comes to doctor evaluations would be an understatement. Mike and I are beginning to feel like hyperchondriacs! It doesn't help either that we keep getting sent to see every kind of doctor under the sun. Good thing Ethan does so well with doctors. I think he may actually look forward to most of them. Espcially if it involves any kind of blood work. Mike went for bloodwork, and while sitting in daddy's lap became upset because he wasn't getting his blood work done...definitely not my child!!

Anyway, since December Ethan has been evaluated by Child Find (Manchester School District), a neurologist, (Dr. Woods), an Ear Nose and Throat Specialist, (Dr. Spector), an Opthamologist (Dr. Morse), his primary care pedi., (Dr. Neefe) and will be seeing an Audiologist at the end of February as well!
Phew!

Let me see if I can shed some light on these visits.
We had him evaluated by Child Find to see if Ethan would qualify for a developmental preschool due to some of the behavioral, and delayed developmental issues he's been having. Long story short, they found him a delightful, intelligent, charismatic 4 year old who's learning hasn't been impeded by any kind of behavioral issues. Funny, that's not what a lot of the doctors have found, including Dr. Woods who determined that Ethan definitely had some delays that if corrected now, could help his development drastically change within the next two years! These delays include: adaptability, social/play skills, self-help skills and communication with same aged peers. She said that in the research she has been doing, his type of delays are secondary to Celiac Disease, and that it's been found that once these children have been gluten free for about two years, AND have some OT and other types of therapy in the interim, can become integrated into a regular school system, (or homeschooled).

So, we enrolled him at Our Lady of Mercy Applied Catholic Teaching Preschool. It is located in Merrimack so it will be a 20 minute drive in the morning. However, we only signed him up for the two day program. It starts in the autumn and will be on Tuesday and Thursday each week. Mike and I are very excited but very nervous about this for a couple of reasons. First of all we would very much like to homeschool, but at this time recognize the need for Ethan to be schooled in a public setting for now so that he can overcome some of these social development issues. We are nervous about this because Ethans issues include biting, hitting, spitting, etc. The last thing we want is for him to hurt other children or to have him kicked out of preschool because he is hurting the other children. He seemed to fall between the cracks, as far as we are concerned, through the school district, so that leaves us with trying to find a place for him that will help him develop socially. We pray that this school will be able to help him with this.

In the meantime, Ethan had his 4 year check up and with that came good news and not so good news. The good news, he's gained a total of 4 lbs over the course of a year. Hooray!! He is now 29 lbs.! Unbelievable. In actuality it has been more than that, because when he was diagnosed with Celiac Disease he was around the 24 lb mark and had lost 2 more pounds in the two weeks between his endoscopy and diagnosis. He grew a little bit in height as well, but not significant. The not so good news is that he failed his hearing and vision tests! In talking with his pedi. we also discussed having him evaluated by an ENT specialist for sleep apnea or other sleep related issues because Ethan has suddenly started napping for 2 hours during the day. We've noticed snoring, and more restlessness at night, so he's now scheduled for a sleep study in March. Upon xray they discovered that his adnoids are unusually large but not touching, so at this point they wouldn't recommend surgery to remove them. They will await the results of the sleep study first.

He also saw the opthamologist in Concord for his vision. We went to a specialist because I wear glasses and Mike had two eye surgeries before he was 5 years old. The pedi. just wanted to cover all the bases. (one of the reasons why I love her for my kids!) Upon walking in the exam room, Ethan took one look at the chair and for the first time ever said to the nurse, "Are you going to hurt me?" I was shocked. He's never shown any kind of sensitivity toward doctor's visits and usually looks forward to them. The only reason that I can think of as to why he said what he said is because at his pedi. appt. he had 3 immunizations and actually said "ow" when the last one was done. Hmmmm....pain threshold decreasing??
Anyway, come to find out he is extremely far sighted. I guess it's normal for kids to be farsighted, but Ethan is so extreme that they were surprised he wasn't crossed eyed yet. Typically kids will become cross eyed around 2 0r 3 yrs. old. So, for now we just keep an eye on him, (ha ha ha) to make sure he doesn't cross his eyes, and they will check him in 6 months. Most kids grow out of it. However, they checked my husband while we were in there, and he hasn't grown out of it yet, so we'll see. (oh those puns just keep coming!)

He has his audiologist appt. scheduled for the end of the month, so we'll have to get back to you on that one.

Wow, I think we are mostly caught up here. Unbelievable how much can happen in such a short period of time. At least we have come out on the otherside as a family who still loves each other and supports each other over every hurdle. God only gives us what he knows we can handle...

Boys will be Boys...Girls will be Girls

It's funny how some things are just gender specific from early on. Boys like to play in the dirt, love loud noises, and enjoy almost anything that includes destruction. Girls love to dress up...again...and again...and again, crafty projects, and enjoy anything that is, well girly.




For instance...a camera appears...and suddenly boys are all smiles...or grimaces! This picture was taken at the hospital when Rebekah's cousins came to visit. Ian and Ethan are like two peas in a pod...just one a little shorter than the other! Their mannerisms are sometimes so alike they could be mistaken for brothers.






Then you have Miss Emma. This picture says it all. She just loves getting her hands on that baby girl. Not to say that Ethan and Ian don't enjoy holding and loving the baby...they most definitely do. However, little girls just can't help being little mommies. It was very sweet.




Just so you know...Ian did get to hold the baby too.

BackTrack Part 1

I found myself going through some of the millions of pictures we have saved over just the past several weeks, and lo and behold I suddenly remembered all of the things we had done prior to Rebekah's arrival.

We weren't doing much mind you, I was much too big and tired for that, however, we did manage to capture some cute pictures of the boys before their sister came home.

Ethan has loved Rebekah since before her birth. He loved looking at and touching my belly. Never did I imagine we'd be touching our belly's together mind you, but that's exactly what happened. He sat on my lap and told me that he wanted his "Lima" (the pretend baby that lived in his belly), to kiss Rebekah. It was really tough to explain to him that Lima didn't exist in his belly and that only girls could have baby's in their belly's, but I don't think it really mattered to him. For anyone who knows Ethan, once he gets something in his head, it's really tough to get it back out again. It is what it is...and Lima was his baby. Since Rebekah was born however, we haven't heard much more about dear sweet Lima.


Another fun event that occured before Rebekah was born, was our huge cookie making frenzy. Ethan has never shown interest in baking. Basically, if he couldn't use his dump truck, John Deere equipment, or spin around while doing it...he just wasn't interested.


Surprisingly, this time, he wanted to help me make some of the most delicious cookies of all...peanut butter choc. chip! Mmmmmmmmm...yummy! We needed to make a dessert that we could travel with for Christmas, as we had family to see. I knew that dessert would be everywhere we went, and that's some of the hardest stuff for me to deal with, never mind the kids! :)

So, Ethan said he wanted to help. And he did, from start to finish, AND the best part was eating the finished product right out of the oven!

Meanwhile, brother Joshua, found it entertaining driving his brother up the wall by wearing his favorite John Deere hat. Josh has discovered the best way to get back at his brother, for now, is to touch, play with, or move Ethan's things around. It's so hard to discipline that...

Our Family

Here we are, our family of five! It still hasn't registered with us, that we now have a little girl. For the most part, at this age, they are all pretty much the same. Good thing I have lots of pinks and purples, and reds to dress her in. Although, I do keep referring to them as "my boys". What I need to learn to say now is "my kids". I can still say "my monkeys" because she is filling that role as a Ouellette quite nicely! :)

Calm vs. Chaos

I have been writing this post in my head for over a week, just haven't found the time to actually sit down and get it into the blog.

Ahh...a moment of calm. She just had her first bath before that picture, and as you know it can be quite exhausting. She loved every moment of her bath though. She is proving to be nothing like her brothers so far.

Let's see...first of all she nurses well. That's right folks, she actually does what her brothers couldn't seem to grasp for the first several months. She even managed to put her birth weight back on in the two weeks that they typically do. Unlike her brothers who took several weeks to months to gain back their birth weight. Even the pediatrician didn't know what to say other than see you in 2 months. Weird!

She also sleeps. Well, as well as a newborn can, but the other two just screamed their precious little heads off from the moment we put them in the car seat to take them home. She loves her carseat by the way, and the bouncy seat, and the mini pack and play, and the cradle...just about anything we put her in...except the swing. She isn't too keen on that yet.

So, that's where we've had the calm. The chaos however, comes from the other two twirling vortex's of energy known as Ethan and Joshua! Between Ethan's constant energy and stubborn will, and Joshua's inability to form sentences thus making every sound that comes out of his mouth a loud, grating, grunting sort of noise...it shouldn't come as any surprise that Rebekah decides to just shut down all the time. It's kind of like having the vacuum cleaner on as white noise to help the baby calm down. My boys ARE the white noise...for her anyway. I think I'd rather have the vacuum on. (At least it doesn't talk back!)

Yes, indeed. We are constantly caught somewhere between the calm and chaos. Never really sure when the scales will tip in favor of one or the other, just always trying to stay one step ahead of it. Then in the few minutes when it is calm, I can try to sit back and enjoy this wonderful job of motherhood. But when it is chaotic, I can speed dial my husband several times an hour, and while on speaker phone share with him the rest of my day.

Rebekah Simone

born on December 30 at 1:52 am. 7 lbs 4 oz and 18 inches long. Long night! But I got my tax deduction! All is well and we are all home. Thankfully Joshua had kept us somewhat in shape, for those of you who do not know. Josh still thinks it a good idea to wake up at least once during the night. So it's not such a drastic adjustment!

More pix to follow!

.mike

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.