father and son
honorary fire fighter of the day...and balloons in his favorite color
the firefighters brought him his birthday cake
and loves with mommy
We had our meeting with the doc today, Brad and i are filling out advanced directives and DNR forms today...and considering admitting him after his bday party this weekend and restart IV's and have meetings with hospice coordinators and social workers.
today his fever is still present. motrin seems to keep him comfortable. i am beyond exhausted at this point and am looking forward to a nap soon.
thank you all for your love and kind words and prayers. Each time I open my email I have over 500 new messages and thats about 3 times a day...so I haven't had time to go thru them all, so even though I know you don't, but please don't take it personally that I haven't gotten back to everyone. But know that I feel so much love and support...
pray.
Praying!!!
ReplyDeleteOh Sarah :( I can't imagine how exhausted you are. I can't imagine what Conner's going through either. I hope clinic is handling this the way you think they should, and the way your family deserves it to be handled. - Know that we're all here if you need us, supporting you 100%, and praying for your family. You & Conner are in my thoughts constantly.
ReplyDeleteSending so much love, and so many prayers your way!
Lots of love!
Chelsea
and may the peace of God that transcends all understanding guard your heart and minds....this is the prayer I say for you each time I think of you, which is pretty much non stop. My workout group is praying, my bible class is praying, my facebook and blogs followers are praying. You are loved, a great momma and being prayed over continuely. May that give you some peace and strength.
ReplyDelete2 Tim 1:7 For God did not give you a spirit of fear but of love and of power and of a sound mind.
You've been on my mind all day. I'm glad that COnner got to spend his birthday with the firefighters and family and friends surrounding him. What a cool celebration!
ReplyDeleteAs Kristi said, please know that you are loved, and being prayed for continually. I've never asked so many people to pray with me before. I've been touched and lifted by the resposes that I've been getting from friends, family and acquaintences, so the blessing is two-fold. Maybe ten-fold.
You'll remain in my heart and in my prayers. Give Conner a special hug from me. I've been sneaking in extra cuddle time with Emily in Conner's honor. Again, what a blessing!
The pics are priceless.... Thinking about you and praying! Xo
ReplyDeleteA friend with CF directed me to your blog by sharing it and asking for prayers via Facebook. I will spread the word and ask my friends to pray. Rest assured there are people all over the world praying for Conner and for you and your entire family. Though it may feel hopeless at times (I can't imagine), God will never leave you nor forsake you... and I can see in this post that He's making that evident to you by surrounding you with amazing people who are supporting Conner in his fight. What a beautiful thing to see the joy and love in these pictures and to feel the love in your words about your son. Blessings and peace to you and yours. I'm so sorry for what you're going through.
ReplyDeleteSarah, stay strong! God is with you and Conner. He is protecting him. I can't imagine what you are going through, but please know I am here for you!! I am so glad we were able to meet you guys last summer. You are such a special family!! And you are the best Mom!! Conner is in very good hands!! Love and hugs,Anne
ReplyDeleteSarah, you don't know me, but I saw your blog referenced on my cousin's FB page. First of all, let me say that I also have a 6 yr old son who is turning 7 in a couple of weeks, and I just can't imagine everything you must be going through with a very sick child! How does any mother find the strength to deal with something so terrible?! I am praying for God to wrap His loving arms around you & your family during this trial you are facing.
ReplyDeleteSecondly, I have no idea what you have looked into as far as treatment options, and I'm certainly no expert, but I did some preliminary reading on Cystic Fibrosis and kept coming up with a link between CF and a selenium deficiency in the child, usually from birth or in utero and not necessarily a genetically inherited link, contrary to the viewpoint held by standard medicine.
To explain: with many diseases, although there may be certain genes in a person's genetic makeup, it requires a certain environment - either too much of something bad (like toxins, pesticides, or heavy metals) or too little of something good (minerals or nutrients) for the genetical tendencies to be 'expressed' (turned on in the body) and for the body to then enter the state of 'disease'. This is true of many diseases including cancer.
I have had great success in treating my own hypertension with magnesium, and much of my research keeps finding a link between so many kinds of diseases and nutritional deficiencies, esp. mineral deficiencies. Minerals are really key! Some studies I read showed that CF had been completely reversed in infants by selenium supplementation - these infants were now 12 yrs old and no CF. Also CF mothers, when given selenium supplementation, had been able to have healthy babies with no CF.
If you haven't already, I encourage you to research it and maybe find a well-respected, experienced naturopath who is familiar with the role of the various minerals in maintaining health of the body.
Also, my 6 yr old somehow contracted MRSA almost 3 yrs ago, and I treated it aggressively at home using natural methods, no antibiotics. We battled repeated & severe outbreaks for over a year & a half, and I'm happy to report that he has had no recurrence of the MRSA for the past yr and a half. Again, I don't know how open you are to natural treatments, but I just wanted to encourage you to not give up & accept his fate; I think you still have options. It may be that you can help him best by researching and finding those options outside of traditional medicine. There may be no options that will work, but what do you have to lose at this point anyway, right?
If you'd like to talk further about it, you are welcome to email me at: jayara@juno.com. I could even refer you to my naturopath you could consult with over the phone - he specializes in minerals, although I have no idea if he's familiar with CF.
I hope I haven't offended you, it may be you have already checked all this out already. I just wanted to encourage you to keep doing what you're doing & fighting for your son! He is very lucky to have a mama like you! You will certainly be in my prayers.
- Amy
Hi, I came across your blog on FB. I can't imagine what your whole family is going through right now. I'll be thinking about you.
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ReplyDeleteHi Sarah iam from Portugal,i will join a groupe of persons,and together we will pray for you and your,s lovely son...both of you and the rest of the family are on my thoughts and prayers...god bless you
ReplyDeleteI've been thinking about you guys a lot. Have you thought about trying to get an urgent Make a Wish for Conner? Those people are amazing.... It could be a great experience for all of you, something you'll never forget.
ReplyDeleteRebekah we did complete his make a wish in january...look at our january posts for pics etc and your right it was AMAZING!
ReplyDeleteOh, I'm glad you got to do that. :) I will go back and look. :) We did Ricky's wish in 2006, a Disney Cruise and it was so great. I had links to the pictures from the cruise on Ricky's site but apparently Kodak has decided to delete them... Sometime I'll get them back up. But on his front page there's a pic of him on the ship: http://www.cfboy.com :)
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