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.