Wednesday, July 27, 2011

Enbrel Today

Thank you Summer and friends for all the nice comments!

Today is the day.  I would love to get it over with but I know Gary will not feel the same.  I would not to start or end my day with two shots.  I will be watching the step by step several times.  Enbrel was delivered on ice in a big cooler.  Never had a delivery like that before.  We were able to get the co-pay covered thru Enbrel for six months.  It was a lot of chasing but worth it.  I am nervous to give this one only because the needle is bigger.  The pharmacy at Children's used a small gauge needle.  This one is clearly bigger.  Stinks.

Gary has been doing better.  Our latest battle is he is always hungry but will not eat.  Well, he will if it is the right thing like a donut or tuna fish.  But that's it.  He keeps crying at night he is so hungry but if it is not a particular way or kind,  then he will continue to cry.  Argggghhh.  I tend to think this is a normal kind of thing for kids but with all the medications his seems to be magnified.  I am thinking of getting him to drink on of the kid protein shakes before bed time.  See if that helps.  His new thing is to throw up his medicines.  I always yell, please please don't.   Poor buddy.  But he has mastered gagging.  I wondered when he would catch on.  He is getting older and wiser now.  Darn it.  I gotta find some new tricks!

Another problem I have been keeping an eye on is potty time.  He has been complaining about going number one : (   Eeeekkksss.  I have a feeling he may have scratched it causing it to sting?  I don't have that particular part so I am not sure.  Keeping a very close eye on it.  I have heard horror stories of kids on immune suppression with urinary tract infections and things like that.  Hmmm.  Maybe I will get him in, even if it is just a scratch.  He doesn't complain all that time though.

Yesterday his eyes were very heliotrope looking.  Like my new tech term for a JDM rash?  Talent.


  1. Yay u got the support program after six mths u can renew it and then shs renew is so worth the bit of hassle LOL...i never thught in a million years dingy me wld know what heliotope was be able to pronounce it and kinda spell it LOL...mine is back too boo i think it is the sun...mine always gets more prominent in the Summer will rock with the shots hey do you have that numbing cream you can put on him before you inject? Yup Im tat big of a baby i still use it for ivs' injections shots blood draws...maybe the steroids make him hungry they sure make me hmmmm poor little are a great mommy....hang in there girl

  2. Poor boy! :(
    Enbrel injections are not that bad but it is wise to have ice on hand and put it on the injection site for about 10 minutes. The injection stings and you can have redness and swelling, ice really helps.

    Continuing to pray for your little boy, my heart just aches to know there are so many children that are sick.


  3. I just found your blog through Summer's Blog. So sorry to hear of your son's sickness. It is so hard to see your children suffer.

    When you said that he is having a difficult time eating and that you were thinking about giving him a suppliment, I thought I would tell you about a product called Reliv. I take this product following CA and it is amazing what it has done for me. There is a children's product also. It is cellular nutrition and helps the body heal. Just thought I would tell you about it. It can be found at If you need further info or would like to ask questions you can email me at I would be more than happy to help you. Take care and be encouraged in God's constant care. Cheryl

  4. Hi! I hope you've worked through some of these issues since July. When you mentioned him being hungry and not eating, it reminded me of my daughter (9 yrs, dx Oct 2009). When she had her prednisone blast her first treatment she told me that everything tasted disgusting. I'd feed her food she used to eat and she refused, even juice, because it tasted "off". Two years later she still gets memories of the old days. Occassionally she''ll take a bite of something and say, "mmmm. Remember when I was on prednisone how i wouldn't eat this? It used to taste like ink!". Anyhow, not sure if the meds have maybe changed his taste buds but thought I'd throw it out there. I hope things are. Looking up for you all.