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#1
09-02-2009, 12:14 PM
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Good News...Update on DS and more!!!
(x-posted)
I just wanted to share our good news update...something we all need more of. Please feel free to add your own good news as well!! And as an fyi, religion is mentioned. DS went to the pediatric rheumatologist on Monday...and the ENBREL IS WORKING! (For those that don't know, my now six year old son has moderate to severe polyarticular juvenile idiopathic [rheumatoid] arthritis.) I just knew it was but it was great to get confirmation...and we have only done four injections (we only do one a week at this point.) Other than his hips...all other impacted joints showed improvement...toes, knee, both shoulders and both elbows. I knew it was working because he hadn't complained about his toes...and his toes were in constant pain which led to lots of daily complaints. It's amazing the change in him...he looks better, feels better, is doing better in school and is eating better. Plus he has so much more energy...a little too much some days lol! But I'm not complaining...poor guy has probably been in pain since May of 2007 and now he feels so good. The rheumy joked and said 'we could always stop the Enbrel'...NO WAY! He also mentioned that he very well may begin gaining more weight (he's very thin...only about 38 pounds) now that he feels better. And judging by what he's been eating lately...I think he's right. I keep adding extra food to his lunchbox and it keeps coming back completely empty everyday! So as long as his bloodwork comes back OK...we don't go back until the end of November...  three whole months (we currently go every six weeks.) Of course the rheumy had to go over the new black box warning on Enbrel...but we quickly agreed that he should continue on the Enbrel. But the Enbrel has a whole set of warnings (listen to the commercials sometime.) They just added a cancer warning specifically for JIA kids...and he is also on naproxen, folic acid and mtx injections. It's scary, very scary, to have such a young child on such powerful medications but we trust in God's plan for him...like we have a choice. We believe our family has been given this miracle...and we just have to rely on faith for the future. Also, as many know, my poor DH has struggled for almost three years in regard to his job/working. We've had a few near misses with jobs...but starting on Tuesday...he is starting what looks to be 'the right' job. I think this is the job that was intended for him all along...but we just couldn't see it every time God was closing those doors in our past. We seemed to forget about the windows He opens...sometimes staring at those closed doors for way too long. Anyway, this one feels right...DH is getting a 70% increase in his base salary, commissions are higher, there are more financial perks, and he will grow with the company. This is not a 'get rich quick/solve all our problems immediately' sort of job...but it will allow us to stay in our home. He will have to work very hard...but he is so excited...the most excited I've seen him in a long time. He has grown so much thru all of this! And talk about God's perfect timing...we must make a full, negotiated down (finally!) mortgage payment no later than November 1st...we are way behind...further than most would even believe possible. And then make two more on time...if we do this...we get to keep this new payment for the next five years...no foreclosure! There was absolutely no way we could have afforded this before this job...now, we'll still struggle, but we will make it! I am so happy my kids don't have to move... I just wanted to update everyone as so many of you have been so supportive to us...it feels good to finally see the light at the end of the tunnel and see the path we were meant to follow. As hard as it has been...the lessons we have learned are invaluable. Our struggles strengthened us... A mom on one of my JIA groups uses a quote similiar to this one...and I love it! “We cannot direct the wind, but we can adjust the sails.” It took me a while...but I'm done fighting the wind...adjusting my sails is so much easier...lol! Thanks again to everyone who has had kind words for us...for the prayers...the support. And again feel free to add your good news!
__________________
Proud Mommy to two...who have taught me I can not change their pasts but I can change me and the way I parent them~ *Yaya~My Siberian Sweetie ~born in 2001~Home 2002~Now 8 and a 'Tween', and in 3rd grade. She's all girl!!!  *Bubbs~My Samaran Sunshine~born in 2003~Home 2004~now 6, in Kindy and such a sweet, silly & special boy!  'My wish, for you, is that this life becomes all that you want it to, your dreams stay big, and your worries stay small, You never need to carry more than you can hold, and while you're out there getting where you're getting to, I hope you know somebody loves you, and wants the same things too, Yeah, this, is my wish.' ~"My Wish" by Rascal Flatts 
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Russia Adoption Information
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#2
09-02-2009, 12:32 PM
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what great news!!!! :-)
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#3
09-02-2009, 02:24 PM
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K, I'm so glad to hear all the great news. I'm happy to hear that A is feeling so much better. It is scary the cocktail of drugs it takes to control this disease, but worth it if it helps reduce/eliminate the constant pain and reduce the long-term effects of the disease.
Good news on the job and housing situation, as well. That has got to be a load of worry off your shoulders!
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#4
09-02-2009, 02:26 PM
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 So good to hear all of this good news for your family. You have all struggled for so long in so many aspects and I am so happy for you right now. The best of luck to your DH in his new venture and many positive thoughts for DS to keep progressing. Good stuff!
__________________
Proud and Lucky Mom of Adrian (A-09/29/04, St. Petersburg)
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#5
09-02-2009, 02:32 PM
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That is great news- the whole family has great news!!
I like your saying about the window opening- don't ever forget to check the windows!! So glad things are looking up. I always enjoy reading your posts. They have helped me through some struggles with Nate. You have helped me out and don't even know it so thank you
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Amy Andrew Bio son age 8 App to agency 2/2005 Homestudy complete 5/2005 Dossier to Russia 7/2005 October 2005 referral of 14 month old boy 11/19-11/25/05 trip 1 4/3/06 GOTCHA! Welcome home Nathan!
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#6
09-02-2009, 03:07 PM
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I am SO happy for you! Great news all around for your family. How wonderful.
I understand about the meds. When the benefits outweight the (major!) risks you just have to trust. What else can you do with a child in pain?
__________________
Signed with facilitator 1/23/07 Profile completed & sent 2/07 M a t c h e d ! 8/23/07  Cameron is born 11/10/07  FINALIZED!!! 4/3/08 Cameron is diagnosed with Hypoplastic Left Heart Syndrome 11/10/07 Life is beautiful, but it's complicated. We barely make it. We don't need to understand, There are miracles, miracles. Yeah, life is beautiful. Our hearts, they beat and break. (Vega 4)
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#7
09-02-2009, 03:42 PM
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What a wonderful thing to get to read. I'm so happy for all the success you are having on each and every front!
__________________
"When life gives you lemons, you make lemonade. I have several stands." James Brady http://kretzklan.blogspot.com/
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#8
09-02-2009, 03:58 PM
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K - I am so, so happy for you. We are still in the middle of the storm here (no jobs, no certainty and everything else) BUT reading what you wrote ministered to me TOTALLY. Thanks you.
Jen
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Jensboys - Mom of 4 Boys (2 adopted, 2 biological)  Reunited SisterFostering Miss Tiny and Miss Curious - Two Months and 13 months when placed May, 2009 Blogging about reunion with our 14 year old, Not reuniting with our 13 year old, transracial parenting, adoption and life as a minority family in a rural community. And oh yeah, now I have cancer.
'Oh, the audacity of authenticity. You’re going to confuse, piss-off and terrify lots of people – including yourself. You're going to pray it ends, then pray it never ends.' -- Brené Brown
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#9
09-02-2009, 03:58 PM
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This is wonderful news! I am so glad for you and for your family!
__________________
Christina Big Boy (b. 9/1/01 a. 11/16/04) Buttercup (b. 6/8/04 a. 11/16/04) Vladivostok, Russia Every life event presents an opportunity, a gift. You just need to look closely to find it.
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#10
09-02-2009, 04:17 PM
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I am so glad to hear the meds are working so well for him! That methotrexate and Enbrel combination does wonders for me. I do think about what the long term effects could be, but so far the benefits outweigh the risks.
__________________
Debbie - Mom to 3 Including 2 from Guatemala Community Moderator
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#11
09-02-2009, 04:27 PM
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so thankful to read this post karen. i'm thanking God with you!
__________________
"As you do not know the path of the wind, or how the body is formed in a mother's womb, so you cannot understand the work of God, the Maker of all things." Ecclesiastes 11:5
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#12
09-03-2009, 11:25 AM
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And the good news continues...
DS went to the pediatric cardiologist this morning to check on a heart murmur the pedi heard for the first time last month. While he wasn't truly concerned after listening to DS's heart...he decided to do an echo 'just in case' based on his JIA and the meds he's on. And his heart is NORMAL...it's just an innocent murmur that sounds a little 'original.' Thanks everyone... DPline~ Is this the combo you are on? It's amazing the change in DS...his eyes have changed. I can't really explain it but his 'look' is different...in a great way! Jen~ I'm sorry you guys are still in your period of uncertainty. My only advice is 'give it ALL to God.' I should PM you with some specifics on us...you will see that God's hand has been at work for quite a while. We (me) were so lost until February of last year...I went to a new church for the first time. (I grew up Catholic...we strayed away from religion completely once DS came home...so going to a Southern Baptist church that morning was...a surprise...LOL!) The service was unbelieveable...pertained to me perfectly...and we nailed a piece of paper with all of our 'struggles' to a cross...literally! In that moment I gave it all to God...and a feeling of peace overwhelmed me. While we've had our ups and downs since then...I always remind myself of that day and get that same peaceful feeling. Anyway...you are still in my prayers...I hope and pray you find your 'window' soon. DDW~ Somehow I knew you would understand. I thought about you guys so much these last few weeks...thinking about all C (and you) have gone thru and how well C is doing. Walking into that office today...having him decide to do the echo right then...it did scare me a little. So I can't imagine how you do what you do all the time...and do it so well! (HUGS) Everyone else... I just truly appreciate each and every one of you. Karen
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#13
09-03-2009, 01:53 PM
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#14
09-03-2009, 08:51 PM
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I am so glad to hear about dh's job and your son's physical comfort, pain is no fun, no matter what age but little ones shouldnt have to know from that.
We dont have any significant news, but thank goodness all is status quo here. The jobs havent really started coming back to NJ, I have still recently heard of folks being laid off. I hope by the end of this year things will start to reverse themselves. Thanks for the good news! Amy K, NJ
__________________
Adopted baby Joanna from Tver Region 10/06
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#15
09-04-2009, 04:46 AM
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Quote:
Yes. I take three other meds as well, but we are working on getting me off of those and just down to Enbrel, Methotrexate, and Prednisone. Enbrel really has been a wonder drug for me. Methotrexate has never done anything for me in and of itself, but evidently it is best to take it with the Enbrel to increase the effectivness of the Enbrel longterm. So glad to hear the heart murmer turned out to be normal!
__________________
Debbie - Mom to 3 Including 2 from Guatemala Community Moderator
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