Rhizo Kids Conference

Whew...after four days with families who have children with RCDP and doctors, researchers, and dieticians discussing RCDP 24/7 I am wore out!!! The Rhizo Kids conference was this weekend at Chesnut Bay Resort in Leesburg, AL. There were nine families who attended from places such as California, Texas, Ohio, Canada, Tennesee, South Carolina, etc. There were 9 doctors from around the world...Vienna Austria, Canada, Johns Hopkins, and Kennedy Krieger, etc. It was a lot of work, but it was well worth it.



You all know I had been kicking around the idea of "quitting" Rhizo Kids. After this weekend with all the families I love and all the kids who are just like our sweet Ian I just can't give up on them. I am exhausted and yes this drains me physically, emotionally, and mentally but I just can't give up on these kids. Ian was a child with RCDP and I did start Rhizo Kids to save Ian. I realize our child has already met Jesus but I also know that RCDP and Rhizo Kids will be a part of our lives forever.

So I know the burning question is "How did the conference go?"...Well...there was one particular moment I wanted to give a doctor a piece of my mind about protocols and procedures they expect us to follow. These protocols they want us to wait on can take years, decades even, and they don't seem to remember our kids are passing away before there "protocols" are met. One child in particular...Ian. Get with it!!!

However, there was this one doctor who spoke. He creates drugs and gets them approved for diseases/disorders. AND...we love him!!! He has this drug he has been working on for Alzheimer's patients. He has been testing it on rabbits and this week he begins testing this drug on mice effected with RCDP. Apparently a person with Alzheimer's has a deficiency in plasmalogenes which is the whole problem with RCDP children. This drug PPI-1011 replinishes the plasmalogenes and the drug also has DHA attached to the drug which will help our kids all the way around. Obviously this drug will not make the kids bones grow but it would be a treatment option that would replace the plasmalogenes they are missing. This should improve brain function, eye sight, etc. To my understanding our kids would be the "test" to see if there are side effects on humans. :) There has been no effects on the animals and it contains natural occuring ingredients. The approval process and final expenses will come to a whopping $7 million to $15 million. If this gets approved for Alzheimer's patients he will let the RCDP children receive the drug for free (I think) When asked when this would be available for the Rhizo Kids the response was the end of next year. So...maybe a treatment in the next 1 1/2 years for our kids. Maybe this is our miracle!!! Pray for this doctor...His name is Paul Wood and his drug is PPI-1011. I believe in miracles and I believe in answered prayers. I know we weren't able to save Ian but think about the children who would be saved if this works.

Thanks...I can't say thank you enough. I am probably going to leave someone out but thank you Cherokee County and Tracey's crew from Sylacauga for donating so much to pull this conference off. We had plenty of drinks so thank you for donating. We had plenty of snacks so thank you for donating that as well. We had three different groups to volunteer to bring dinner each night and it was awesome...our close group of friends brought dinner Thursday night, A precious family who loves Ian more than anything brought us steaks on Friday night along with sunflowers from their "Ian garden", and our very supportive sunday school brought dinner Saturday night and even cooked in the rain. We had family and friends volunteer to babysit Rhizo Kids and healthy kids and they provided a fun time for all the kids there. My dad and Wae drove boats and Jet Skis all weekend and the kids had the time of their lives on the intertubes. Many said..."This was the best day of my life." My grandmother and mom spent the whole weekend cutting up fruit and providing lunches and snacks to all the families. They cleaned up and organized and reorganized over and over again. My brother and Kyla brought Owen and were available for all the extra errands I needed met. Wae's mom and dad and his sister and brother in law Andrea and Shane helped with dinner on Thursday night as well and they helped provide food for some meals. Tony's meats gave us pork chops at a discouted price, Subway gave us a great deal for our lunch as well as Dominoe's pizza and Chesnut Bay resort was very helpful with everything we needed. This conference could not have happened without the support of our family and friends and our awesome community.

I am tired and after a four hour nap today I am headed to bed still exhausted. I am very hopeful something positive will come from this conference if not just the support of each family to one another. It was wonderful to see all the Rhizo Kids families and it's looking like we will have another conference next year. I love you Rhizo families and I pray for the best for your precious children. I miss Ian even more today after being surrounded by so many children who remind me of his preciousness. Prayers are needed...

http://www.youtube.com/watch?v=A4ahTk8K7F4 You can view a video of the conference at this link on youtube. Enjoy...

Good Morning!

Update on our sweet dog Shug...it is his heart. Boo! We took him back to the doctor and his lungs were no better. He has a heart murmur due to old age. He will have to take a diuretic every day and during the hot summer months he will have to live inside because he can't breathe good outside. Man...I just really don't want an inside dog! But we will have one now because we love us some Shug and don't want anything to happen to him. He is precious!

I've been a wild woman. I have been working in my classroom every day it seems. I am almost finished though and I love it. I think it's the cutest classroom I've had so far. A very talented lady from our community painted me a mural on the outside of my door and one on the inside where it is our reading area. I will have to take pictures and let you see what it looks like.

Rhizo Kids...wow, next week this time there will be 10 Rhizo Kids families from around the world here in Centre, AL. All of the hard work is finally coming together and going to result in an international conference in Centre, AL and it is going to be pulled off by two mommas fighting for their kids lives. One of the mommas AKA me...has already lost her child's life to RCDP but the other momma still has her inspiration. We encourage the doctors to rush, rush, rush, because our children can't wait. We cannot keep losing our children to RCDP!!!

I think things are together. I am such a procrastinator that I just can't stress about it until next week. Weird, huh?!? I'm sure there are many lose ends to be tied and many errands to be run but I'm just waiting. Oh me...I hope it all comes together. There will be 10 Rhizo Kids families and 8 doctors/researchers/nutritionist here fighting for our kids lives. My prayer is that God guides my tongue and I don't lash out at the doctors because they didn't find the cure quick enough for Ian. Please join me in this prayer because I seriously can see me saying things that simply aren't necessary out of anger and hurt.

Sunday is Father's Day...another first around our house that I don't look forward to. Men are so different from women though. I admitted how hard Mother's Day was for me and I was in a pit for days if not weeks before Mother's Day. Wae doesn't seem to think it will be hard but I know men try to be tough no matter the circumstances. I can't wait until he is the daddy of a wild healthy "herd" of children running around our house with Shug tagging along behind. I know he will be the best dad who doesn't take a single second for granted and I know he will love our kids more than anything in the world. I can't wait until the day God decides to bless us with healthy children.

Well, I better go. I have a lot of Rhizo Kids errands to run that have come to my attention as I have been typing this post. Ugh...I didn't write any of them down so you better bet I've already forgotten the majority of the errands. Maybe my memory will come back and I'll accomplish something today for Rhizo Kids. I hope you all have a blessed weekend and my prayer for you on Father's Day is that you know just how blessed you are to be a father. Don't take it for granted...

Good morning!

Just a quick update this morning. Geez...our house is a zoo. You know I told you guys Wae wanted Shug back inside because we thought he was going deaf. Well...took him to doc and he has fluid in his lungs. Can we say dejavu'??? The doctor gave him meds for kennel cough and said he didn't know if it was kennel cough or heart failure. Really?!? I vividly remember a conversation with Ian's docs much like the conversation with the vet. Really?!? WEIRD!!! He is eating it up and loving every second of being inside. He remembers all the old ways and is rubbing it in Miley's face that she's outside. So mean...

I have had many people ask me to tell them when I am going to speak at Celebrate Recovery. Well...it is tonight. I'm not good at telling people when I speak because I just feel weird about telling everyone but there have been many people who wanted to know about this engagement so it will be tonight. The music at CR starts at 6:15 and then I speak.

Rhizo Kids Conference Needs:

***Cases of water...cases of water...cases of water... We had someone donate 21 packs of 24 packs last week of soft drinks so we have that area covered. We only have 4 cases of water though. So...if you were wanting to do something to do help Rhizo Kids water would be a great way.

***A video taping pro??? The doctors would like to have the Rhizo Kids conference videotaped and I am simply swamped and can't imagine taping the conference. As a matter of fact I just really don't know how to set up the camera on a tripod and do all that it involves. We would also love, love, love it if the video expert would be able to burn DVD's for each family and doctor to take home Sunday. Rhizo Kids will buy the supplies to burn the DVD's I just someone to tell me what to do and what to buy.

Thanks for your help guys. You are always so faithful to help Rhizo Kids. I hate having to ask for help so much but it takes a lot to pull this off and I'm not sure if we are going to pull it off. LOL...I've procrastinated bad!

Going to give Shug his meds and hope he quits this coughing. Geez...he's just a dog Mary! He's just a dog!!!

Disappointing people and disappointing God...

I have really been thinking about disappointment lately. Not disappointment about where my life is going now but about disappointing other people. About how many of us would work ourselves to the bone before we didn't do something for someone who needed us. About how we will stay up day in and day out to complete projects for other people because we enjoy doing them but also because we don't want to disappoint the person. We agonize over details in our lives because we wouldn't want to "disappoint" someone who counted on us.

I have been "thinking" (key word here is "thinking") about backing off on Rhizo Kids. I have entertained the notion of handing the reigns over to someone else and me taking this stressor out of my life for awhile. I have agonized and relentlessly tried to work out every detail of what could happen to Rhizo Kids if I "quit." I have struggled over the fact of how many people would be disappointed if they didn't have a new Team Ian shirt to wear each year. (some of you may just be glad to not buy one LOL) I have struggled over the fact that I started this for Ian...to find him that cure or treatment to help him and am I really going to "quit" on Ian. I know Ian is LIVING in Heaven now but in my eyes everything that is done for Rhizo Kids is in loving memory of our precious Ian and when that cure is found because of what we all started I do want it to be in loving memory of Ian. I don't want anyone to think I am a quitter and the last thing I ever want is to disappoint someone. I was crushed when I discussed this option with people and they were not ready for me to quit because they too weren't ready to give up on Ian's cure even though he is no longer with us. I could hear the disappointment in their voices and I can't stand to disappoint someone.

Well...do we care this much if we disappoint God? Do we even just "entertain" notions or do we jump in head first without even asking Him for His opinion. Do we care what God thinks when we only read our bibles on Sundays at church or when we never pray and seek His guidance in our lives. Do we care if we disappoint God by the choices we choose each day or when we put so many things before Him? Do we care if we disappoint God before we don't go to church because we make up yet another excuse? (It's so easy for me to want to sleep in on Sunday and have the whole day to just Wae and I) Do we care if we disappoint God by "quitting" on him the way I have thought of "quitting" on Rhizo Kids....you know just slacking off a bit on God. Not reading my bible quite as much, not praying every day, not going to church every opportunity we have, and not trying to win souls to Christ. Wow...I really haven't ever thought about "disappointing" God! I bet he has been very disappointed in some choices I have made and how I have chosen to spend my life many days preoccupied by the things of this world.

Soooo...I say let's start becoming conscious of our decisions and let's think about whether or not God is proud of us or if he is disappointed in some of the decisions we make. We always worry about what other people will think about us and I think it's time to think about what God thinks.

A little side note...my classroom is awesome!!! We painted it already...3 walls blue and 1 wall yellow. My "theme" is bees. I always have to have a "theme." Mine used to be monkeys and safari but after Ian's love for monkeys I just couldn't go there. We have "The Math Buzz" for my math meeting board, "The Reading Hive" for our classroom library, "Buzz Words" for our word wall, and many more things that need to have a title. If you are creative with this send your ideas about bees and beehives. We're going to paint a big beehive in my room at the "The Reading Hive" and there will be painted bees around it too. So cute!!! I'm thinking..."BEE autiful work" for the student's work displays, "Buzzing with good behavior" for the behavior chart, etc... I am really excited about getting back to teaching and can't wait to meet the kids.

Another side note...our "baby" before Ian was born was our cocker spaniel Shug. Wae got him for me my sophomore year of college. He lived in the house until Ian was born and then he was kicked out. So sad... :) Well, Wae has been wanting to get him back inside for quite some time now and last night he wouldn't take no for an answer. He used the ole'..."I'm afraid he's losing his hearing and I don't want him to get run over" Well...I can't stand the thought of Shug dying too so guess who is back inside after three years of outside?!? SHUG... This is going to take some getting used to. I think he'd rather be outside and right now I'm riding the fence on this decision. He really is the BEST dog ever so I guess we'll just roll with it. Well I better go find Shug something to chew on before he finds the door frames.

See ya'.......

New Direction...

Well...last week after I updated I met with the Superintendent of Education for Cherokee County.I got my new job placement for next year. I will be a 1st grade teacher at Sand Rock. This isn't the school I was at before Ian so I think God is sending me in a new direction now. I have been there working and painting my classroom and I haven't met one person yet who isn't nice. I mean everyone is overly nice and very welcoming. It makes going to a new school so much easier. And on the plus side I am real good friends with the principal's wife. So...I already knew the principal really well and that relieves a lot of stress to know the boss.

I've heard time and time again from people that they think this is a blessing. You know...I had my normal before Ian was born which was at CES. I had dreams for my future with our healthy kids and so on and so on. Those plans I once had were all shattered the day Ian was born. Now it's like God is giving me a new normal after Ian. I remember what it was like to prepare my classroom and work before Ian was born and I know what it feels like now. It's so different. I told Wae that from the outside looking in our life is "normal" to people now. Just like it was when I taught at CES. I thought things would feel the same but it is so different. I am still a teacher at heart. I loved my job and I cannot wait to jump back in head first. However, there is nothing about me that is the same as before. I have had a total body, soul, and mind makeover. Many things are better, some parts are still broken, and many parts are still healing. I believe God has placed me at this school, in this grade for a time such as this. I know HE is up to something and that he has great plans for my life. I know He sees the big picture and I can't wait to get a glimpse at his plan.

Reminder...Pottery Party this Saturday at Wae's office in Ellisville. This is where we do handprints and footprints of your children and place them on pottery...plates, cookies jars, canister sets, holiday plates et. We turn them into anything you want. If you want to schedule an appointment for "Precious Pottery" please email me and I'll let you know what times are available. For those of you from Centre this is with Deanna Patterson and Amanda Harkins. It makes great Christmas presents and it is one of my most valuable treasures of my time with Ian.

2nd Reminder...Rhizo Kids Conference is almost here. Aagh!!! What was I thinking planning this. I have way too much going on!!! We need drinks. We have 50 people to feed and provide everything for for 3 days and we don't have enough. We need soft drinks, water, drinks for kids, juices for breakfast, etc. We don't have much at all. We could also use little debbies and packs of cookies for the families to snack on during the days. We can use homemade desserts too for our meals and visiting times. If you want to make desserts you can plan on delivering them to Cotton States Insurance on Thursday, June 24th before 12 pm. I will be leaving for Chesnut Bay at 12 and will need to deliver all desserts, drinks, and food to the rented cabins we have. Please help Rhizo Kids with this. You can buy drinks and drop them off at Cotton States Insurance between 9 and 4. Deadline for drink delivery is Wednesday June 23 at 12 pm. Thanks for all you guys do to support Rhizo Kids. I just know this is going to be a blessed meeting with many new discoveries for the Rhizo Kids. You can email me at maryellis96@yahoo.com with questions or for volunteering to help with conference.