Family Time

Recently we've become addicted to jigsaw puzzles...it's an awesome way to spend family time and encourages the family to sit together and talk without the tv turning us all into zombies.

Here is one we finished a couple of weeks ago..we had done it years ago..it was a hand-me-down from my mom..so now it's missing a few pieces. It was still good fun..time to toss it though w/ those missing pieces.



We have been trying so hard to figure out ways to keep our son Cameron away from playing his computer game Freelancer so much. If it were up to him, he'd live in the corner of the living room where we have his computer table set up at and never leave.

Here's Cam in his favorite spot. Over the last few months of watching him go through the symptoms of gastroparesis and eosinophilic gastroenteritus, I'm just happy to see him not laying in misery on the couch.



It's really hard w/ his condition because it makes him feel nauseas 24/7. However, addictions to any one thing is not healthy either..esp w/ your face inches away from a screen all day every day. So we take easy walks around the neighborhood..one after each main meal...we often bring the rc cars w/ us..esp at night w/ flashlights attached to the top of them. At first he was not interested..but little by little his interest is growing...



peeling out in the dirt...



we watch our favorite shows together and try to make it a family event..love the DVR! We read together and sometimes I can coerce him into helping me bake whatever allergy safe goodie I'm trying out for him, but there really isn't a lot he likes to do right now. He used to love board games but as a teenager he's turning up his nose to that everytime we suggest..and scrabble too..that used to be a favorite of his (I suck at it)..he would play with his dad and they were so serious about it. But now he says it requires too much thinking and he can't handle it with the nausea.

A few weeks ago a lightbulb went off in my head as I layed down to sleep..."Hey a jigsaw puzzle!" that one has been a hit. Now we always have a puzzle at the table..we even start to panick when we are almost done...wondering when and where we are gonna get the next puzzle. Not many places to shop here for them. And you know.. to have fun w/ a puzzle it requires some forethought..it's got to have enough color and different things going on.

Here is the latest one we are working on..it's sooo pretty and so much fun! It's about everything that flies, from birds to leaves to flying fish...The colors are amazing. I"ll post a pic when we are done. I"m definitely saving this one and will bring it out again next year.



While we may not be able to have dinners around the table together because it's occupied w/ a puzzle...at least we are doing 'something' together at the dinner table! And really for our situation it works out better because family time at the dinner table isn't centered around food as food seems to be our sons enemy these days.

Now if we could only find more puzzles!

Our Saturday at the Beach

Finally..we got out of the house! We've been stuck inside for so long..just trying to work through some health issues with our son Cameron. He was diagnosed with gastroparesis in August and then in September with eosinophilic gastroenteritus.



I don't remember the last time that I have been so aware of the wonderful ocean air...I've stayed away from the beach for very long intervals before..often letting a year pass in between visits. When I finally go again I don't remember being so aware of sound of the waves and the refreshing ocean air...sure I appreciate it always..but Saturday it was different.. I think we just REALLY needed it this time.

We went to Sprecklesville Beach. Here is Cameron when we first got out of the car...his first time out doing something other then doctors appointments in months and months. He's gotten really 'comfy' staying at home every day..didn't really want to go even, but we insisted it would be good for him.



I promised him just an hour..for lunch and to sit back and read..no pressure. We did our after lunch walk there too..it was such a nice change from the same walk around the neighborhood.



He even did a little exploring with his dad by the tide pools.





We probably stayed an extra hour..and after we stopped at my favorite health food store Mana Foods and picked up some supplies and some frozen yogurt to eat on the way home. Such a simple outing yet sooo very refreshing and very very much needed!

Trip to our new acupuncturist

Actually I think he calls himself a naturpathic physician. I'm happy to find Dr. Kern though..so happy he is on my Kaiser insurance. He is looking at Camerons situation much different then the medical doctors are and in a way that I feel makes much more sense. He spent about an hour with us and got to know all of Cameron's issues..illnesses and problems through out his life. It's all connected somehow. Problems can lead to larger problems and he's about treating the cause not just putting a bandaid on the symptoms.

Here's a pic I snapped with my camera phone while Cameron was getting an acupuncture treatment and a laser treatment on his stomach.



We are still following the advice of the medical doctors, Cameron is on steriods right now which is hopefully going to calm down the inflammation and edema in his stomach and colon. But we are anxious to see what Dr. Kern will want us to do. First he has ordered a couple more blood tests that the reg docs did not order. As soon as Cameron feels well enough we will do that. He did have a good day yesterday, but of course it was a Sunday and the lab was closed so we couldn't take advantage of a good tummy day and get it done. Today started off bad, he hasn't thrown up in about 2 weeks..but thats how we started the day. And so now he's hardly eaten and of course I'm thinking about how it's a step back from the wieight I"m hoping he may have gained from having some good eating days. But I've been told this is how gastroparesis is..really with no rhyme or reason. Certain foods will make them sick..but sometimes they are just sick for what seems no apparent reason.

Beach Bride Necklace..

Those who keep up with my blog know I've been busy taking care of my son who was just diagnosed with Gastroparesis. I've not much time to create new jewelry pieces..but have been working it into my schedule again little by little. This piece was made right before we found out. It's the diet that he has to be on that is very time consuming..and different with each patient..so it's a lot of trial and error (and boy does momma feel bad when she feeds her boy something that makes him feel yucky) ..but as we learn things that work for him..I'm able to get a little more time in. I posted this necklace to the shop a few days ago..it's available here: Baby Freshwater Coin Pearl - Beach Wedding Necklace

I'm hoping to pull out some beads to make bracelets tonight and bring them out to the dinning room table where I can see the TV and then I can still spend some time with Cameron. I am so very grateful that I work at home and can be here for him. And I'm grateful for the orders that have still come through. I wish I could hug everyone of my customers..they have made paying for Camerons tests, meds and special diet so much easier. Thank you!! ((HUUUGSSS)) to you all!

Thanks for the posts!

Wow..thank you so much for all the posts and emails I've been getting. I've also joined a yahoo group for Gastroparesis and the support and advice sent to me in emails has been wonderful! I just love the internet!

I'm slowly but surely getting my brain back and making room in the day for my jewelry and internet activities. (I need it for my sanity!) It was important to get a routine of what to feed this poor kid of mine. A lot of it is trail and error, so we are still working on it. But we are finding some things that are working and so I'm getting a little more time to myself rather then spending it all constantly researching.

I'm also having to cook a little more which is probably good for me. Cameron has to eat things that are super easy to digest...blended is best. He needs calories to gain weight so it's an issue of what we get down him plus how much. He can't eat a lot at once because it just sits in his tummy, so he has to eat more often.

Last night we made sweet potato and leek soup. Blended the leek so he could have that. While I love sweet potatos, the soup never sounded good to me. My son was not crazy about the idea..but we don't have a lot of choices. It turned out awesome! I just didn't put in the allspice and the lemon. That seemed wierd for soup. And I had added in the leek from another sweet pot soup recipe that was microwaved. (I didn't want to micro it, he needs his food healthy and not all the nutrition zapped out of it) I added a tablespoon of butter for calories for him and it made it taste even better. It was really quick to make. Here is what I did:

3 sweet potato cut up (they were kinda small and skinny)
1 leek
minced onions
1/2 cube of vegie bullion
1/2 cup homeade chicken broth (make chicken broth for use later and keep in freezer. Chizzled off some to put in soup)
water
3/4 to 1 cup of original flavored almond milk (can use real milk, but it hurts my sons tummy)
dill
salt
pepper
tbsp butter

boiled this in a large heavy saucepan. didn't measure my water, but made enough to be like a small pot of soup. It covered the potatos well. boil till soft. peel skins off potatos. Cool slightly, put in blender and blend till smooth. Put back in pan, add milk, butter and spices to taste. simmer 1/2 hour.

Then we made homeade chocolate pudding. I didn't realize that has eggs in it. So that was more protien for him. Esp since he can't seem to eat just eggs like for breakfast. It was all a hit..he did not get sick last night.

Today we took a trip to the acupuncturist. He hated it..has a fear of needles. But he endured. Came home with a chinese med tincture for nausea and diarreah. Tastes discusting but he doesn't mind it..so thats good! We also go for a short walk after each meal to help move it down. He's started having 'Gerd' issues which have been scary for him not understanding whats going on with his body. but thanks to the support of the group we joined, both of us are understanding his symptoms better and can i can help calm his anxiety down.

I'm looking forward to seeing whats new with everyone...so I will probably be pestering your blogs soon ;-P~~~

Possible direction for son's illness...finally

So my son's endoscope and sigmoidoscopy tests ended up showing that his stomache and his colon are not contracting like they are supposed to. Normally they contract about 3 times a minute. I'm not sure how much his is contracting, but the doctor said they just kind of lay there like a bag. I will be able to talk to him more on Tuesday when the biopsy results are ready. They went ahead and took biopsys..but as far as how his stomach and colon looked..it all appeared okay so no sign of cancer or tumors or inflamatory diseases like chrones.

On Sept 26th he has an appointment to get a stomache emptying test. I guess this will verify what the doc thinks it is and that is 'gastroparesis' Evidentally it's not a commonly known condition and it needs a lot more funding to study it. Many people go undiagnosed for years and suffer immensly from it. It happens mostly to people who have diabetes. I'm not sure if it's the disease or the drugs they are on that causes it..but it ruins the vagus nerve. That's a nerve in the neck that goes down to the stomach and tells the stomach to contract. People with anorexia get it too or the nerve can get damaged from a surgery. It can also come from having a bad virus. Some just get it and they dont' know why.

I am thinking my son got it from 1st a stomach virus he caught in April. Then about a week after that I cooked a crockpot full of raw pinto beans. I slow soaked them over night, then slow cooked them. I was not aware that all raw beans have a toxin called Phytohaemagglutinin and you MUST boil them for at least 10 min at some point. If you don't you get very sick. It lasts only about 12 hours..nausea and diarreah. my husband and I did not get the nausea but my kid who always gets everything 10 fold..got both so bad. He just never got better after that. His poor tummy got a big whammo twice in a row. I'm hoping that is the reason he has this gastroparesis, because people who get it from a virus usually get over it in a couple of months. It's been about 5 though for my son. When I look at his 17 years of life though, he's always had tummy trouble. Projectile vomiting as a baby and every single time he was sick, no matter if just a cold..he ended up throwing up. Every morning growing up...if he didn't eat in time, he would say "mommy I have morning sickness!" and I would have to rush and grab him some cereal or even a cookie..whatever so he would not end up over the toilet gagging. He only threw up once from it..but came close a number of times. I'm wondering if there was a start to this all way back then.

But at least we have a direction to go in now and at least I can rule out stomach cancer. I'm not very happy with the diet he has to eat though. It goes against everything I've ever learned about eating healthy..losts of fruits and vegies and fiber. He's to have no fiber at all, they want him to have white bread and saltine crackers. Everythign needs to be blended, meats blended (yuck!) any vegies or fuits blended or juiced. No salads :( Hopefully he can get to a maintanence part of the diet where he can eat a little more...like 2 oz of baked chicken or fish..but some people can never get to that stage. He has to eat small amounts just more times a day (6 to 8). It's super hard to get him to eat that many times with the nausea. The anti nausea drug is helping now..but I don't want him to stay on that forever. Drugs always have side effects :\ He's probably lost 15 to 20 pounds..and was very skinny already. For sure he's lost 10 in the last 2 months. He's starting to look malnurished..ribs showing in back..spine sticking out far when he leans over..small arms. It doesn't take much imagination to picture him as an anorexic.

So I'm busy learning all I can about this and trying to learn recipes. If anyone knows about this condition, has any recipe ideas..esp ones that are more natural..please let me know. On Tues I've got him going to a somatic excersize instructor that is here from India teaching a class of instructors (my mom, a massage therapist, is attending) this teaches you to wake up muscles that your body has forgotten about and turned off. 100 bucks for an hour..but I've got to take advantage of him being here. Then on Wednesday I'm taking him to an acupuncturist (Kaiser covers most of it..yay!) because I read that acupuncture has had success with helping to get more enzymes down into the tummy to help digest for people with this condition. Cameron is not very happy about this one as he hates needles. I told him acupuncture does not hurt..but he does not care. He's been going to a Nutri Energetics practitioner and is on Kangen water.

I'm just so upset that he was just starting to get on with his life. He was going to take his test for his diploma (we homeschooled and did Hawaii's required 40 hours of tutoring so that his GED test completion would give him not the reg GED but a diploma certificate) and he was getting ready to get his permit. We just got him a car too...someone we knew just wanted to get rid of one that needed somethign simple to fix so his dad fixed it up for him. Some of his friends just graduated and he'd been spending time going places with them and enjoying a little more freedom and time away from having to do schooling. So he was pretty excited about his life moving along and then whammo. Now he has not much quality of life. Everyday is just about fighting to get food down him and hoping he will gain some weight.

Heres my guy a little healthier in 2006



and here is at 15 months when we first moved to Maui..



If this is what he is going to have to live with I'm definitely going to need a juicer! Anyone has any suggestions for a good one let me know. My credit card is soon to start getting a work out..Our insurance only pays 1/2 of all these tests..so the med bills are piling up..plus special foods and other alternative health care visits I've done. But I think a good juicer is what we need...somethign that will allow more nutrients in and let him have raw foods again.

So now I've got to get my creative side back and make more jewelry. Thanks to all my wonderful customers, I've been able to pay for a most of Cameron's care as hubby's work has been slow because of the economy. But no one can buy my jewelry if I'm not making it! I actually got a necklace photographed this evening that I made a couple of weeks ago. Hopefully I will get that priced and up soon.

sorry for the long post..but many of you asked for an update and I don't get much time at the computer lately..so I gave you a huge update. Thank you for all your notes and emails and well wishes..I REALLY appreciate it! I'm sorry if I have not been able to visit your blogs much lately. I hope to get this diet situation under control so I am not spending so much time in the kitchen experimenting. I'm hoping we can get him on a routine that works for both of us.

Thanks again for all your kindness!