So Pathetic

Don't laugh, this is my view several times I day. Don't get me wrong, I understand that Ryan does not feel good most of the time, but holding a 32 lbs. child all day starts to wear on you. But really, could you say no to that face. Anyways I have been wanting to capture his pathetic face so I would have proof that he can manipulate me to the core.

On a side note the boys health is the same. We have completed their preliminary testing and now have to do base-line tests before we can start the Enbrel shots. We will be giving them shots 2 times a week (each) and re-evaluate their health at the end of 6 months to see if we have noticed any improvements. Luckily the Rheumatology department at Primary Children's are going to fight the insurance company about picking up some of the cost of this EXPENSIVE medication. Although, they have used Enbrel shots for lots of kids with JRA, Davin and Ryan will require twice the amount of other kids their age so we have to monitor them closely. It is an immuno-suppressive medication so we will be a little crazy about being around sick people, but hopefully the medication will work, their bodies will tolerate it well and their illness will go into remission soon. Of course with a rare disease, you never know what will happen so for now we are hoping this will bring a little normality to their lives. They are concerned about Davin's size, I guess his BMI is only 7% compared to Ryan's 100%. They are not sure why he is so small since there is no genetic predispositions and TRAPS is not known to cause waisting. We are interested to see if treatment will help him bulk up to a healthier size. Since there are less than 25 children right now with the disease, they are not sure if there is a correlation or not. I guess anything is possible right?

Orange County Register

My sister Holly and her family were featured on the front cover of the Orange County Register yesterday. Their story is amazing and I am proud of her speaking out against aborting terminally ill babies and letting women know that there are other options out there. This is quite a feat, especially in liberal Southern California. Love you Holly & Mike!

http://www.ocregister.com/articles/holly-aubrielle-michael-2185921-elise-baby

Happy Birthday

Just wanted to wish Trevor a happy birthday yesterday! We had so much fun celebrating! The boys went all out (at least in their own way) and they were very excited for dad to come home from work so the "party could begin". At any rate, Happy Birthday love, you are the best!

My Handy Man

Trevor can fix practically anything. Sometimes it is amazing to watch him fix something that I thought "there is no way". Of course, when possible, he finds a way. Most of the time he does a better job than the professionals. This weekend he has fixed my phone, SIM card, replaced the garbage disposal, took the old one apart, figured out part of the navigation system and has said he would fix the blanket basket and blind wand. I'm sure there is even more that he has fixed because let's face it, we do have three boys. Also in his spare time he has attended a gardening class and visited the teachers garden (where the gigantic watermelon came from) and has several ideas on how to fix our currently producing garden as well. If it is something mechanical, electronic or anything with an engineering component- I have no fear! My handy man has a beautiful mind.

Davin's Testing

We recieved the results for Davin's genetic testing. He is positive for TRAPS as well. We were not very surprised since it explains his recent 104 degree temperature and symptoms. It also explains a number of his health issues over his lifetime. We are going to meet with some specialists and try to sort out his issues. Since this disease is in every cell of the body, some of his issues differ from Ryan's so we might have to see different specialists and convince them that TRAPS really does exist. Some MD's have been supportive and some think we are inventing this. If I could invent anything it would be a super vitamin that is a "cure all" and sell it for three easy payments of $39.95. OK just kidding. At any rate, we feel bad for Davin, but are happy to know what is wrong. Hopefully we can find effective ways to help him be happy & healthy.

Congratulations Terra & Josh

Terra (Trevor's sister) and her husband Josh, had a healthy baby boy last night. He was 8 lbs 6 oz and 21 inches long. They named him Benjamin Huff. He was born via C-Section, but it sounds like it was the way to go. Both mom and baby are doing well. I just think he is adorable- Terra and Josh you do good work. We are so happy for you!!!!!

So My Child

Today I was taking advantage of some quite play time. However, as most moms with active children can attest, too much silence makes you wonder if everything is OK. After several minutes I went to go check on Davin. Of course the negative in me said "I wonder what he has broke", only to find him in the bathroom with the trash can in hand. I asked him what he was doing, he said "Chores, of course". What? Yes you read right! He was emptying the trash can, picking up toys and singing in the process. At that moment I thought, "He is SO my child". Now if I can get that gum out of his hair that he just put in (while I was blogging), then I might get some real down time today!!!! Here (or hair's) hoping.

Thanks to the Taylor's

I just wanted to thank the Taylors for taking our children and for the yummy dinner yesterday. It makes all the difference in the world to have friends, especially ones that support and care for one another. We are grateful for their continued friendship and example. Everything went well at the hospital yesterday and I should know next week the results of the biopsies. I feel that we have a couple more hurdles, but we should get some supportive answers soon. Also a big thanks to Trevor for taking the day off work to be by my side. Love you!