Well….Emily is having a relapse

    • Anonymous
      October 28, 2008 at 4:25 pm

      Emily had to go 4 weeks between treatments, yesterday was 28 days since her last one, & today I noticed that her eye isn’t moving all the way over. She’s been complaining of her arms & legs hurting for the last few days & this morning the back of her ankle was hurting & tight.

      Her nurse is coming today to give her a treatment & I have a call into the neuro. I’m hoping he’ll do a loading dose & then put her back on once every 3 weeks. He promised me he would if I noticed she was declining…hopefully he’ll keep that promise. Maybe I’ll make him do every 2 weeks for awhile then go to 3 weeks. I don’t know yet.

      I’m really stressed out about this. My husband is going through some stuff & is off of work for the week because of it & now this is happening with Emily.

      Just wanted to let you all know.


    • October 28, 2008 at 4:59 pm

      Hi Kelly,
      I am so glad You came on the site, I was going to post you in the prayer requests anonomously, but now everyone can ask God to help EMily and her family specifically. Call me as soon as the nurse leaves. We’ll figure this out together for Emily just like we do with Kev. Kevie and I will say a prayer special for Emily and I will put her name on the prayer list at ccd tommorrow. Don’t get stressed out too much, you are the glue of the family right now. Call me and let J. relax. Just remember, we DO have a medicine and you know what to do and the doc will listen. You will get Emily back on track, a little blip just got in the way!!!! You absoluteley did the right thing trying to stretch things out. You have to see where she is at, maybe she could have handled it, you never would know unless you tested it responsibly and you did. You noticed a change w/in hours, you can’t get more responsible than that. AND you will have the courage to test it again. If you think about it, the growing and weight gain since the start has been significant, technically it is not even a maint. dose. So if you think about it, she is still making headway because she CAN successfully take less than a maint., just not a month apart. Even at three weeks it is longer than a full life since the amount is not exactly a maint dosage. DON’T give up hope and put that silly bauble hope ring you and I and Cindy have on. If not symbolically, just to remind you!!!! Call me when ever. If I step out tell the kids to call me on my cell and I’ll call back or you call my cell. Keep strong friend!!!

    • Anonymous
      October 28, 2008 at 5:04 pm

      Kelly, you and you family are continually in my prayers. Keep us updated how things are going

    • Anonymous
      October 28, 2008 at 5:05 pm

      Kelly I am so sorry to hear this about Emily! Sending out prayers and HUGS to your family. Try and stay strong, let it out when you can’t. Hoping for a speedy road to recovery!

    • Anonymous
      October 28, 2008 at 5:34 pm

      Kelly, Sorry about Emily. You are all in my prayers. Take good care.
      Good luck and all my best,

    • Anonymous
      October 28, 2008 at 6:16 pm

      Hi Kelly! So sorry to hear about Emily going into a relaspe! Bless her little heart! Tonight I will be thinking about her and saying really strong extra prayers for her. Please keep us posted on her outcome! She indeed has me praying and I won’t stop praying for her until I see her well again! Hugs
      Linda H

    • Anonymous
      October 28, 2008 at 10:43 pm

      [B]Hi Kelly,

      So sorry to hear this, but I will keep Emily in my prayers. Sending big Brandy hugs your way.[/B]

    • Anonymous
      October 28, 2008 at 10:51 pm

      Kelly, Sorry to hear things aren’t going soo smoothly right now. Take it one day at a time Hun! Emily, Big Hugs!! Hope you get feeling stronger, Sweetie! You’re doing a great job Kelly, things will calm down, stay positive. You are All in My Thoughts and Prayers.

    • Anonymous
      October 28, 2008 at 11:27 pm

      Kelly, just a note to say I am thinking of you, Emily and your family. ou will get through this, and we are here for you when you need to vent. there will be lots of prayers for Emily tonight and I know God is listening. Best Always!

    • Anonymous
      October 28, 2008 at 11:31 pm

      Hugs and Prayers to Emily and family. You will get thru this. Just hang in there.

    • Anonymous
      October 29, 2008 at 5:23 am

      Well that is a major bummer. Looks like it’s going to take a little longer to wean her off of the IVIg. HOWEVER she is doing great ON the IVIG so this is just a little bump in the road. I get little mini-relapses at 4 weeks too and so and sticking with every 3 weeks for now. We’ll try spacing it out maybe in December but I get the same sort of creeping-back symptoms if I go too long. Don’t think of it as a relapse, maybe just as a reminder of how far she has come on the IVIg and how much it helps her.

      Kelly if there is anything I can do to help you please let me know – saying that knowing I have no money, and can’t physically do much… and of course don’t live anywhere near you. :rolleyes: I’m an idiot but I do care.


    • Anonymous
      October 29, 2008 at 7:54 am

      I’m sorry this is happening. You and your family are in my prayers.


    • Anonymous
      October 29, 2008 at 8:59 am

      So sorry to hear Emily is not feeling nso good. You so strong you are such a GOOD mom & loving for your daughter. My prayers are with your entire family. Stay positive you can do it. 🙂

    • Anonymous
      October 29, 2008 at 11:18 am

      Sorry to hear this about Emily. Hope it is only a short setback and she makes a quick rebound. Thoughts and prayers for you, Emily and your husband .

    • October 29, 2008 at 11:21 am

      Kelly, I too am sorry to hear about Emily. I pray for strength (spiritual, physical, mental and emotional) for you. You have a lot of burdens you’re carrying. I pray for Emily (healing and feeling confident and comfort from you). I pray for her docs (wisdom and being at the top of their skills to give Emily the best possible treatment. I also pray for your husband (God knows what he needs).

      I love your post script about Emily; it has given me hope. I pray her healing will continue and she will be cured and your post script will give hope and inspire others for years to come.


    • Anonymous
      October 29, 2008 at 12:39 pm

      Any update on Emily yet? I know its pretty quick after her IVIG but i have been thinking about her. I know how important Halloween is to kids and its right around the corner so she has to be better! She has her Fairy costume to wear so we can see pictures! Your family is in my thoughts and prayers.

    • Anonymous
      October 29, 2008 at 1:11 pm

      Thanks for all of your kinds words & support. I cannot tell you how much it means to me.

      We saw the neuro this morning. It was an adventure getting there & home. I got lost! He moved his office & I’ve only been there twice & the ramp to my exit was closed….it was crazy!


      Emily is supposed to get IVIG today, Thursday & Friday. I haven’t heard back from her home care yet but I’m hoping they can get the meds to me ASAP. She had her regular 20 grams yesterday. So the plan is to give her 30 grams for the next 3 days. That will total 110 grams.

      Then she’ll get 20 grams once a week for the next 4 weeks.

      We go back to see the dr in 3 weeks.

      Her eyes hurt when she tries to look right. Her legs & feet also hurt. But guess where she is….SCHOOL! She insisted she go in late!

      I’m really stressed out right now & feel like I’m swimming an uphill battle. I know we’ll get through this though. You know how they say that God will never give you more than you can handle? Well, I think God’s expectations of me are too high, LOL.

      Our health insurance is changing on Saturday – it’s still BCBS but it’s through a different carrier so we had to fit in her IVIG by Friday because I wouldn’t have had enough time to get the new insurance info to the home care company.

      Emily will still be able to Trick or Treat on Halloween – even if I have to pull her around in the wagon. She has a 1/2 day of school that day so her nurse is going to come earlier. Since 20 grams takes 2 hours & 45 minutes, I’m thinking that 30 grams should only take another hour or so, right? She’s always only had 20 grams each infusion so this is something new.

      Thanks again for all of the support. I have a pic of Emily from Thursday night when she was dressed up that I’ll post when 1) I can find my camera & 2) when I have time.


    • Anonymous
      October 29, 2008 at 2:19 pm

      This was taken last Thursday. It’s the only pic I got to take. It was at her school’s Halloween party. My mom made the costume. Emily designed it.


    • Anonymous
      October 29, 2008 at 3:26 pm

      She looks adorable in her costume! Hang in there! Like everyone else said is just a bump in the road! I’m so sorry to hear that things are so overwhelming right now, but my prayers are for you and all your family! Hang in there and know that everyone is here for you!


    • Anonymous
      October 29, 2008 at 3:35 pm

      She is darling ! She’s so lucky to have a talented Grandma, too !

      I’m glad things are coming together. Stay strong…you both have lots of prayers from all over the USA.

      well wishes,

    • October 29, 2008 at 4:29 pm

      What a doll! And talented too. I will have to tell my wife to look for her on the show “project runway” someday. Thanks for sharing the pic. Stay strong by leaning on the Almighty.


    • Anonymous
      October 29, 2008 at 5:16 pm

      What a pretty picture! Talented Gma and Emily for the design. Sure hope the meds kick in fast and she’ll get back to not hurting. What a gutsy little girl you have!

    • Anonymous
      October 29, 2008 at 7:58 pm

      Emily has talent to design such a beautiful costume. Her and Grandma make a good combination. Have fun trick or treating Emily.
      My prayers are with you.

    • Anonymous
      October 30, 2008 at 11:03 pm

      Hi Emily,
      Your costume looks great. My boyfriend and I decorated the whole bottom half of his house and when trick or treaters came they had to go down into the dungeon to get their treats..it is so much fun. tomorow night we are having a costume party for our friends and family. We try to buy a new item each year to add to our collection. Hope you and mommmy and grandma have as much fun as we do..

      Happy Halloween