News about Kevie….

    • May 28, 2009 at 8:06 pm

      sorry no info

    • Anonymous
      May 28, 2009 at 8:28 pm

      That’s great news, Dawn!

    • Anonymous
      May 28, 2009 at 8:30 pm

      Praise Jesus Christ . Kevies immune system is kicking in. I am happy for you Dawn.


    • Anonymous
      May 28, 2009 at 8:31 pm

      My sweet friend Dawn I love to read something from you filled with the great ones blessings. I can almost see you mowing and smileing and the glow within you. Isn’t it wonderful the way the Great Spirit works and how blessings come to us when we need them the most. Dawn you are a loveing gentle woman and mom. My prayers are with you and Kevie (Your unconditional friend Steve)

    • Anonymous
      May 29, 2009 at 5:48 am

      Hi Dawn! I am so so happy to hear your news about Kevie! You sure have had a rough road and I can only imagine the prayers you have said many times over. I have never prayed cutting the grass saying the Hail Mary’s but kept a picture of the Virgin Mary across my bed post and many nights I sat and looked at the Virgin Mary and prayed over and over again to be healed!
      Even had events where I felt so bad taking my bad and prayed in the tub. Well I must say the day you cut that grass, it got blessed many times over. But I know what you are going through and it’s got to be one of the hardest things a parent could experience. Alot of worries too and alot of concerns.
      Will keep Kevie in my prayers too and will say those Hail Mary’s also! Hugs
      Linda H

    • Anonymous
      May 29, 2009 at 7:30 am

      I am so happy to hear the news….

      You have fought so hard for that little man….

      I’m so glad to know there is a chance of getting better with the right treatment.

      Yeah for Kevin !!!!! What a good way to start the summer !


    • Anonymous
      May 29, 2009 at 8:11 am


      Sorry I have not had a chance to call you back. I am so happy to hear about Kevin. Maybe since Kevins reflexes are back, his CSF protein is normal and his nerve conduction is normal, his body is healed! Maybe his headaches is a way of saying I don’t need this ivig. God has given you a threefold answer just like the Father, Son and Holy Spirit. He often works in threes.

      Selah is doing a lot better since getting ivig weekly. She is such a pumpkin and she has won the hearts of the workers at the infusion center as she always does. She has the sweetest voice and she is very endearing like her daddy. She calls the nurses silly pickles and silly gooses. She knows everybody’s name and she is so social. We see Dr. Mendell again 6/16. He reviewed Selah’s ncv from Dec. and said she had no blockages. I said great and he said, no it isn’t. He made it sound like blockages are easier than slowing to cure. ??????

    • Anonymous
      May 29, 2009 at 8:36 am

      Yahooo for Kevie! It’s always good to see good reports! I pray that it continues. Are you continuing with the IVIG taper? Did you do the happy dance? I would be! Thanks for sharing your good news.

    • Anonymous
      May 29, 2009 at 11:10 pm

      Great news Dawn! I know you must be dancing in the streets….so to speak. Glad Mary interceded on Kevie’s behalf. That is a mother that knows about endurance and pain and she truly knows how hard it is to be a mother and see your son suffer. God bless!

    • Anonymous
      May 30, 2009 at 8:11 pm

      Dawn……so happy for you and Kevie. 100 Hail Mary’s is a BIG yard-I’m sure God is hearing your prayers and answering Kevie’s needs. God Bless you. You are an amazing woman, Dawn. Tell Kevie hi from me.

    • May 31, 2009 at 4:59 pm

      Thanks for the kind words guys. I am very excited and hopeful, yet cautiously optimistic. Obviously, best case scenario would be to wean off ivig and hold our own. If we find out it is medicinally induced, then at least we know ivig is working. By the way, I have this hope ring that I wear all the time, I lost a little weight lately and it fell off at a party on Saturday, I hope it is not a jinx. I know the answer, but it still worries me!

    • Anonymous
      June 1, 2009 at 3:04 am

      WOOO HOOO!!!!! Dawn that is excellent news! I’m so glad to hear it! I was actually down at Rush on Tuesday of last week, so once again we just missed each other!

      I’ll continue to keep my prayers flowing for you and your family, but I am sooo glad to hear this news!

      Hope your gardens doing well, mine is flourishing!

      Take Care!


      ๐Ÿ˜€ ๐Ÿ˜€ ๐Ÿ˜€

    • Anonymous
      June 1, 2009 at 7:56 am

      Hi Dawn! Maybe God let you loose the ring now because somebody else needs to find the ring to give them HOPE! And he feels that you won’t be needing it anymore! Lets think of this in a positive way instead of a jinx! That way it will make you feel better and not be worrying about a jinx! LOL! I know! I would feel the same way! When my father got sick 7 years ago before he died my mother gave him a haircut the last week before he died. She gave me the plastic tray with his hair in the tray and told me to take it outside and go dump the hair in the field for the birds to get!
      I remember going out the door with the tray and something hit me so very hard. It dawned on me that his hair might be the only thing left of my father to touch after he dies! I started balling like a baby in the garage and could not throw his hair away. I snuck back into the house and grabbed a zip lock bag and placed his hair in that bag. Placed it in my purse and kept it there until later in the year. After he died I had something that nobody else had. My father’s hair! And I felt like his spirit was with me and watching over me everywhere I went. The next year after he died, I went and bought Lockets and in each Locket I placed some of his hair in the locket and gave them as Christmas presents to each grandchild and my mom and sister. I keep the locket in my purse and when I need it I take it out as a good luck Charm and Security. That locket with my fathers hair has been my good luck Charm, I need my Dad Charm and my Charm of Hope! If I were to lose it, I just don’t know what I would do. So I would have to think that somebody needed an Angel in Heaven and they chose my father to watch over them giving them the same comfort I needed! Lets pray that ring went to a good cause! Hugs
      Linda H

    • Anonymous
      June 1, 2009 at 10:39 pm

      It is great news about Kevie’s NCV/EMG tests. What I take this is as an indication that the current therapy is working to help in as much healing as possible. It seems best to keep a slow and gentle approach to weaning off the immunoglobulin nfusions and to continue to be “proactive” as your doctor says to prevent any backsteps. My understanding is that nerves never heal the way that they were made the first time. This is part of the reason that people seem never to get life-long back to 100% and that some people have residuals and late consequences. This is not negative, but just a statement of the fact that one can learn to appreciate 95% more than the original 100%. Hopefully, Kevie will get back functionally to 100% in strength. If the pain continues, this should be addressed for itself.
      My last comment is when I read about the Hope ring slipping, I was 1) proud of you that you were able to lose weight and 2) my first thought about it was “hope fulfilled”. Maybe it is a sign that there really is a potential to have the hope of health for Kevie fullfilled and for him to be able to live an almost normal life. It seems much, much more like a sign of this than any sort of bad omen–the association is with a good event!!!
      WithHope for a cure of these diseases

    • Anonymous
      June 4, 2009 at 6:25 am

      possibly the best news I’ve heard in over a month – tell Kevin I’m very happy for him!

    • Anonymous
      June 11, 2009 at 8:45 am

      Hi Dawn,

      Excellent news about Kevins NCV. You can’t ask for better than that. As far as his ankles, I have the same problems. In my case, I think its the achilles.
      when I overdo it they hurt. its seems to be sloooowly diminishing.

      His hurt when he is sick though so I don’t know for sure about that but it is
      probably where his body hurts when he isn’t well.

      Just wanted to pass on that I am happy for him and your family on this
      good news.–tim–

    • Anonymous
      June 11, 2009 at 12:23 pm

      Dawn, Love to hear Good News about Kevie!!:) Hope all pain goes away and he is able to enjoy his summer.:D Stay Healthy you guys!!

    • Anonymous
      June 20, 2009 at 1:10 am

      That is such wonderful news! I have not been to this site for a while but you were one of the reasons I had to come back and post about our visit to Johns Hopkins. You had the right hunch, my son does have transverse myelitis. He is doing much better and the doctor there said that he will recover 100 percent and that this will be a one time occurence. It was music to our ears as is your news of the EMG/NCV! It all just takes time, we are looking at about 18 months until my son will be totally better but at least we know what it is and what to expect after almost 8 months of wondering.

      Thanks for all of your help and support. Kevie continues to be in our prayers…enjoy the victory!

    • June 20, 2009 at 11:51 pm

      So glad to hear your great news!! Thanks for the kind words!
      Dawn Kevies mom