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

Endoscopy Part V - the final entry

Well I got the results from my scope and it was negative.

Which means I don't have Celiacs. So I can continue to drink manhattans.

Good news for me. We will probably try to go as gluten free in the house so that there is little chance of Ethan accidentally eating gluten.

I think Michelle is going to have the DNA blood work done, just to see if we should proceed with the scope. We have decided that she should wait until Joshua is off of breast feeding before the procedure is done. Just in case kinda thing, the stuff they use to knock you out is not safe for little one - go figure. So blood work is the preferred method right now.

More info as we get it. Oh yeah Ethan is still only eating here and there - don't know how to fix it. We are both getting a bit frustrated, I am sure that it is a normal 3 year old behavior, but on the other hand he needs to gain. Sounds like a broken record.

Oh well should get some work done.

later
.mike

The Good, The Bad, and The Expensive

We were told, and continue to believe that we are very fortunate to have a diagnosis at such an early age for our son. However, as Dr. Russell said this morning while on the phone with him...yet again...it is unfortunate too. There aren't too many three year olds running around demanding 6 full meals a day with 5 8oz. glasses of milk, juice or water! It's such a tough age without any dietary restrictions.

So, the good is that we have a diagnosis and he seems to be improving in both his belly shape, and his bowel movements. The bad is that he is barely eating what he needs to maintain his weight, not gain. And, it's almost impossible to get him to eat what is needed nevermind what has been fotified without causing some sort of eating disorder that years of therapy will have to correct!

That leaves the expensive...enter the insurance company. You know the one that we already pay more than we should for, whose deductibles and copays went up as of January 1st, and their list of what they do and don't cover seems to be expanding every day. Especially the don't. For instance this Duocal that we have to fortify every beverage with for Ethan. We have been running cirlces with the pharmacy, doctors office and the insurance to try to get this product covered as it is very expensive. Well, the pharmacy won't order it until they know the insurance will cover it because it is too expensive and not prescribed often enough to warrant having it sit on their shelves. The doctors office was contacted and sent not only the pharmacy but also the insurance company a medical neccesity note stating the our child NEEDS to have this medicine to help provide nutrients he isn't getting. Upon calling the insurance company, they said they haven't received any such approval, and need to have the doctors office contact them so they can make sure my son falls into the criteria that warrants his need for this medicine. Since when did they get their medical license??

So, I called the doctors office this morning and spoke with Dr. Russell who said that it is noted in Ethan's chart that the insurance company WAS contacted and given necessary approval. According to the doc. NH insurance companies don't see the medical necessity in prescribing nutritional supplements for children. Massachusettes does. He says he's come up against this before and without saying it, sounds like we're in for a battle. According to the insurance company, because it is considered a medical supply not a prescription we will be subject to the $250 dedcutible followed by an 80/20 coverage up to $1000. So, just how much does this "medical supply" cost? No one knows!

Now, take into account that we will do what we have to in order to get our son the health care he needs, but he isn't even consuming what is necessary at this point anyway. It's been a whole different kind of battle here, one that the parents are losing. Oh the power of a 3 year old. The doc. says he will need to remain on the Duocal until he is consistently gaining weight. I'm thinking at least 12+ years, right?? :)

Weight Check T + 3 days

Ok we spent the weekend trying to get you know who eat and drink MORE calories. As is turns out it is almost as tough as trying not to eat for me. See Ethan hates stopping to refuel, breakfast, lunch and dinner (which to him are interchangable, and that has nothing to with ne not being able to remember what meal we are currently eating) are a chore for us, we ask him what he wants to eat we make it and he takes a bite and says "all done". We tell him he is having mac-n-cheese (rice pasta) and he says ok takes 1 bite and is "all done" Takes 1 sip of milk is "all done". Needles to say mom and dad are "all done"!

We have tried to trick, bribe and plead with him to eat, yet he refuses to do so. The only time he seems interested is when we are at someone else's house, and really how often do you want us over?

So we are still looking for new ways to get the little power plant more fuel.

On the bright side Joshua seems to be putting on more wight everyday and the doctor said it is very unlikely that he has Celiacs, he has neither of the heplatite (sp) so he seems to be in the clear.

I still have not heard from my doctor about the results, perhaps this week.

later
.mike

Weight Check

As I told all of you a few posts ago, Ethan had lost a whole pound. For him, that's a ton! I know we all wish we had his problem. However, it's a big problem for him.

We went to see Dr. Russell as well as the dietician that works with him. She specializes in treating these kids with Celiac Disease. Come to find out our little guy is supposed to be taking in about 1300 calories a day. On a good day, he's only taking in about 800 calories!!! I don't know how he manages to have so much energy!! The question isn't so much, what to feed this child, it's how to get him to eat the high calorie stuff. Since it's already a restrictive diet, we don't have much wiggle room. Plus, we don't want him to have empty calories and become a junk food junky.

So, they weighed him and on their scale he was 24 lbs. 12 oz. According to our scale at home he checked in at 25 lbs. So, he gained back his pound give or take...and I was strictly forbidden from weighing him again! :) I absolutely love this doctor. He gets it. He knows that as a mom we worry and worry and worry about these things, but he doesn't want me to drive myself, (or my husband for that matter), crazy. Granted Ethan should have gained more than that by now, but we have to remember that we are still dealing with a very picky 3 year old!

Changes to the diet...well, not many...but a few. First of all we have to get him to drink milk as much as possible. About five 8 oz glasses a day!!! Less water, more milk. Uh hun! Ummm, my kid doesn't drink that much water, never mind milk which he seems to have a lack of love for. Plus, we have to fortify everything we give him to drink with this duocal powder, which helps to boost the calories of the milk or water that he is drinking. Okay...my son seems to have a knack for figuring out when we've added something that supposed to be tasteless to any of his liquids. Well, we found a gluten free choc. milk, which the doctor said we could do since he's not as concerned about calcium absorption right now as he is weight gain. Ethan loved it...for the day yesterday. Today...not so much! ARRRGGGGHHHHH!!

Also, we need to make sure he's eating about every two hours...roughly six times a day. Including a snack after dinner, right before bed. The dietician recommended having him help me make a frozen fruity ice cream shake, fortified with flax seed just before bed. Haven't tried it yet...but I have a feeling that someone will catch on to that one fairly quickly!

I have noticed that he tends to eat better at other people's houses, and sometimes with his friends as a sort of peer pressure thing. Around us, it's like we suck the appetite right out of him!

Pray for us, we're going to need it.

endoscopy part IV - i think

Well as you probably already know I had my endoscopy last Friday. Joy of joys I tells ya.

Actually it was not that bad, only the 2 ish hour wait, 40 minutes in the waiting room, then God only knows how long I sat in the prep area, half of it with an IV in my arm.

The actual procedure took all of 20 minutes maybe.

I remember sitting on the guerney in the procedure room, laying back and getting oxgen the last thing i saw was the clock at 2:50, after I woke up and realized where I was I looked at the clock and it was 3:30. I must have enjoyed my little nap because my leg was hanging over the bedrail, nice relaxing nap. Anyway I guess I saw Michelle at some point but I don't remember a thing.

Felt really sluggy the rest of the day. Should know more in a week or so, will keep you informed.

later
.mike

Issues

As I had stated in a previous blog, Ethan's gluten free diet lifestyle seemed to be stable...at least in the weight gain department. Well after weighing him on Friday, it doesn't seem to be the case. He had lost one pound in a week's time. So, being a panicked mother I started calling his doctors, because as you all know, he can't afford to lose any weight. I finally touched base with his pedi. GI, Dr. Russell, and we have an appt. this coming Friday to meet not only with him, but with his specialized nutritionist. We have to find some sort of high calorie nutrition drink or foods for Ethan. Dr. Russell agreed that he can't be losing weight, so he wants to see him so he can feel Ethan's tummy and take a look at him. Maybe something else is going on. All I know is that his appetite has gone down hill again, along with his behavior. Some days are better than others. For instance on Friday we left him with his Uncle Dan and Auntie Lori while I brought Mike to the hospital for his endoscopy. (no results yet, but he did fine! What a trooper!:) From what I understand he was a little eating machine. He had two bowls of mac. and cheese, 3/4 of a turkey dog, pirate booty, veggie booty, tings, fruit, etc. But then on Saturday, not so good.

Now I know that a lot of that sounds like typical toddler/preschooler behavior...but it's also a symptom of eating problems associated with Celiac Disease. Plus, now that he weighs only 23.5 lbs. he really can't afford to live off the land. For anyone who has children you can understand a mother's worry and concern. We are very lucky that he hasn't become terribly ill, or hospitalized with broken bones etc.

However, after talking with someone who works with children who have sensory input problems, I believe that may be the next issue we'll be facing with Ethan. Not to say my little guy isn't intelligent, he has an amazing vocabulary and quickly picks up any behavior both desirable and undesirable. However, he has an incredibly hard time with focus and attention. Again, sounds like typical behavior, but when combined with a health issue, it's a little more than typical. At least that's how I understand it. Maybe I'm just being a worry wart, or an overreactive mother, but so be it. My child's mental, physical, emotional, and spiritual health are of the utmost importance to me, and I will do what I can to provide whatever he needs to be healthy in all areas. After all, it's my job!:)

This Friday (03.10.2006)

I'll be going in for my endoscopy (sp?). Can't wait to get this over. Not that I'm scared of the procedure, it is just that I am tired of all the testing. After Friday, one way or the other I believe that we will be going gluten free in the house. It will just make things easier, plus the diet ends up being better for us in the long run.

I have been looking forward to get this test over with and move on with our lives. Michelle is going to cancel her endoscopy just because it poses problem with breast feeding that we feel is not worth the effort. We will go gluten free and if after a while Michelle eats some gluten and then feels ill then we will know, end of story.

Enough about that. We had a nice extended weekend at Dennis & Cheryl's. Don't know if they feel the same but hey they said yes to us coming up, so it is their own fault. heh heh heh.

Anyway it was nice to get away for a few days. Pluz wee allso phound owt that I kan't spel komming orr silly yaks, but for some reason I can do crosswords, go figure.

Now only if we could get Ethan to walk to the lake.

Thanks again guys.

later
.mike

Weekend Away

We had our first long trip away from the safety of our house this weekend. Fortunately it was to another safe house. Our good friends in Maine. They have a mostly gluten free house as well, due to two of them having Celiac Disease as well. Needless to say, it was pretty worry free, which was nice. We haven't really traveled anyway overnight yet since Ethan was diagnosed. Mostly it's because we haven't had the time, but it's also because we wanted to make sure we had a clue to what we are doing. What better way to venture out than to go to another mostly gluten free home!! :)

We had a wonderful time. We really did. Even my husband made the comment "I like it when we come up here honey, your so much more relaxed!" Amazing that we can call a house full of 6 children...5 of them mobile, loud, and crazy..four adults (all of whom their sanity should be questioned), and a dog, relaxing...but it actually was! For us anyway, probably should check back with our friends to get their perspective on it!:)

Even though we had a great gluten free weekend away, we are glad to be back home. Back to the laundry, dishes, dirty floors, messy rooms, and other daily duties that make our house a home. My favorite duty of all...hugging and kissing my children!

One Month

So, it's been one month since Ethan's diagnosis. I can't believe it's only a month. We already feel like old pro's at this stuff.

Changes? Well, although it hasn't reflected in any weight gain, his appetite has definitely changed, and so has some of his behavioral issues. I weighed him on the day we got the diagnosis and on our scale he checked in at 24.5 lbs. That's what he weighed in still today. I know it's not something I should be getting him into the habit of watching, but I can't help myself as he is already just so little. Don't get me wrong, it's great to see that at least he's stable and isn't losing weight, but still with the increase in his appetite it's hard to believe that he hasn't gained anything yet. The doctor's told me he may not gain anything right away, but I'm a mom and I worry about these things. Always have with him. Like I said before, he's eating. AND, they other thing that I have to keep in mind is that he is more active now as well since he's feeling better. So, I think he's burning off a lot more than he was before, even though he's now taking in more...(who wouldn't want that problem???)

Right now he's snacking away on his Peanut Butter Panda Puffs, (which he calls Panda Pups) while running around and away from me in nothing but his diaper...who needs to wear clothes anyway!

Playdates

I can't tell you how fun it is to see my little guy playing with his friends. It's wonderful when you can see and hear your children interact with other children they know and love to be with. Take for instance today...Ethan had his best friend in the world over...aka: Jamie!

These two monkeys treat each other like they were related. They yell at each other, beat on each other, steal toys from one another, complete "monkey-see monkey-do" the whole time they are together. And yet, they also work well together, talk to each other, (maybe not quite listen to each other all of the time!) read together, make up games with each other like Chairs, and Crash! They could't be more different and yet more alike. Ethan is older than Jamie by seven or eight weeks, but Jamie is taller then Ethan by a couple of inches. They compliment each other, therefore are able to teach each other things that us poor mommies either cannot, or don't want to be taught!

For instance; Jamie likes to wrestle and play rough with Ethan who would much rather run around like a mad man screaming at the top of his lungs while pushing his dumptruck that he constantly crashes into the walls (or people). At the same time, Jamie likes to sit for short periods of time and work on little craft projects like coloring or drawing. Ethan however would just scribble a little bit, and then find it much more interesting to peel all of the paper off of the crayons before taking off on another run around the house.

Well, some of that has changed. Don't get me wrong, my little guy still has enough power to run most of Manchester, but for the first time, I was able to get him really involved in an art project today with his friend. They painted, (that's right I said paint) these sticker crafts I picked up a Target...(love that store). We put on some plastic smocks, put down a drop cloth, and put into those tiny little hands the power of a paint brush, complete with water, paints and said object to paint.

I had to remind him a couple of times to focus, but he actually did it. He must have sat there for a good 15-20 min. painting. Now, don't think he still wasn't very "Ethan-like" because any of you who know these two little boys would most definitely be able to pick out who painted which pictures. Jamie's has nice bright colors that are for the most part identifiable as a rainbow of color. Ethan's on the other hand has more of a brown kind of coloring going on...but he managed to use every single color, name them, and chant along with Jamie all the steps of how you paint. Which go something like...dip, dip, dip (in the water to rinse), dry, dry, dry (on the paper towel), then paint, paint, paint...repeat. It was wonderful.

Results

I had my GI appointment today to get my results from the anitbody test. According to this GI normal results are under 19...I was a 5. Having said that, he felt that we were all set and I shouldn't worry about it since I don't "appear" to have any symptoms. Considering that almost any mother of two young children could look down the list of symptoms and start ticking off everyother one as a "yup, had/have that one", it's a wonder that we don't see every single mom tested for it. Every piece of research I have read has stated that false negatives and false positives CAN occur. If that is the case then why wouldn't he test me further since I have a confirmed case of Celiac's in my son??

So, I showed my GI the fancy, smancy medical diagnosis that Ethan's GI Pedi gave us. (At the time Ethan's doc. felt it might be handy for us to have it so that any other GI doc would "know" what to do to look for it in us. Thank goodness he did!) Suddenly, he asked me again what symptoms I've recently had in my lower GI...(not gonna bore ya with the details :), and then said that we might as well do the scope then. I felt like I was coming off as a hyperchondriac!! (no laughing!) I mean, it's not that far out of the realm of possibilities since my son has it.

Anyway, he then goes on to tell me about the procedure and I thought to ask about the meds. I would be taking and their affects on breast milk as I am still nursing Joshua who is going to be 8 months old. He said I may have to "pump-n-dump" for 24-48 hours! Well, at that rate my little guy may just wean himself, and I'm pretty sure we aren't quite ready for that. Plus, he won't take a bottle anymore, and with all of the medical and food costs already accumulating, we certainly don't want to add formula bills on to that total! (no offense to those of you out there who bottle feed your children!)

So, we are at an impasse.

Mike and I talked about it, and although I'm going to schedule my procedure for now, we are hoping to get Mike's results back before that. If he's positive then I will wait on my appt. until such time as we are done having children. In the mean time I will just go gluten free with the rest of the family. If I feel better and notice that gluten bothers me after being off of it for awhile, then I'll know...albeit without a technical diagnosis. I just don't think I'm willing or ready to cut my poor little guy off from not only one of his sources of important nutrition, but also the precious little time we have to bond together as only a mother and child can do. My time with him like this is so short I'd hate to lose that sooner than we must.