Saturday, October 30, 2010

Much needed relief!!!

Finally!  We got some GOOD news today!  For one thing, Emily went back to school today!!!  Tuesday she was still so tired at Cub Scouts that I wasn't sure she would even want to go to Brownies on Thursday.  It was our Cub Scout Halloween party and she was bugging me to go home early.  Last night, however, she was talkative, and she was even trying to play a little bit.  Kevin said that she slept most of the day, so I really thought that it would be another week or two before she went back to school, but this morning she was up and trying to get ready to go!  I really wasn't convinced that she was ready to go, but she was determined.  The worst that could happen would be that Kevin would have to go pick her up early, right?  They had their "Book- O- Ween Parade" today, along with Halloween parties all day.  Of course, that's why she wanted to go today.  And she didn't come home early!  I was worried about the elevator.  Their elevator only works intermittently.  It seems that they've had the repair people out every other day & as soon as they leave it goes out again.  I think she would have been home a lot earlier if it was out!  It should be interesting to see how November goes.  Heck, it should be interesting to see how tomorrow goes!  I'm not sure how much energy she stored away, how much she pushed herself.  If she paced well she'll be ok tomorrow.  If she pushed herself then she'll probably be totally out of it tomorrow.  We shall see if she'll be able to go to school daily or maybe every other day.  Another possibility is maybe half days.  She has another doctor's appointment and infusion appointment scheduled for November 3rd.  They may or may not keep her overnight.  I am hoping that maybe they will be able to lower her steroid dosage.  It makes me so sad to see her puffing out from the steroids.  Her little belly button is almost missing.  She looks like she has a little beer belly.  :(  Her face looks so different to me.  It's funny how different she can look in such a short time.  However, as much as the damn steroids scare me, as worried as I am about the long-term effects on her, I know that they are working and doing their job well.  Her voice is getting stronger, she can stand longer, she isn't having as much pain, I think.  For all that, I am grateful.

The other bit of good news is that she has been approved for Social Security!!!  This is huge for us!!!  Since Kevin is still unemployed and the medical bills are mounting, this will help a lot.  I really just need help with medical bills.  Our copay for her Orencia infusion alone was $200.  That was just one dose.  I cannot imagine how much her hospitalization and all of the tests will cost.  We just assumed we would be paying the hospital for the rest of our lives, but I know too well that they bill everything separately.  The MRI would be one bill, the Upper GI another, the Chest X-ray another, doctor bills another...  We're already so far behind.  But what can you do?  When your child is very ill what choice do you have?  That is a huge relief for me.  I have worried, gotten hives, worried more, decided I can't worry about it.  I can't remember the last time we all went somewhere together, or bought anything that we didn't need.  This will indeed help a lot.  I still need to fax in my paycheck stubs from June to now, but at least I know we're approved!  Hopefully we won't have to worry anymore about more hospitalizations, but I know that it's a very real possibility over the next year or so.   


  1. Oh Danielle I am so happy to hear about the S.S. and that she is starting to feel better!!!! It must be so scary to be able to SEE the effects of the steroids. But, as you said, at least you are also seeing improvement. Poor little button. So much for a child to deal with and go through. I can't imagine the stress you and Kevin are dealing with. I know that it's hard, BUT, give it to Him as much as possible. I have found so much peace in that. I am so thankful to have found God and my church. We do all WE can for her, after that it's in his hands. Please know that y'all are in my prayers.

  2. Congrats on being approved!! I have been told that we need to start the process for Jackson, especially now that they are on private insurance. I'm waiting to hear if they will get to keep straight medicaid, not holding my breath there.

  3. Thank you both! Amy, if I didn't have God on my side I don't know what I'd do. The most joy that I've ever had started when I learned how to let go. (My kids' favorite song! Off of Natalie Grant's "Relentless" album!
    Courtney- I wrote out a whole paragraph to you before I remembered that I sent you the link to the application!!! LOL! Sometimes I swear I'm brain dead. Oy!