One week I rather skip but as aways life goes on :)

Hello to all my precious family and friends!

I have to tell you that this last weekend was pure heaven for me and that for the first time in so long I was almost able to forget that Connor was sick. We had a fun and also relaxing time at home as a family of eight and even ten at one point, Oma, Opa, Niki, Harlow, Sam, RW, Connor, Alexander, Ron and I. We even got a wonderful visit from Shelly, Clare and Alexander. Connor was mostly quiet throughout all of it but he was very charmed by Harlow and he was very sweet to her throughout the 5 days. Do most of you remember the countdown we had when Niki went into labor with Harlow while we were holed up at CMH in Chicago. Now Harlow is already 10 1/2 weeks old!!!!! crazy how fast time flies!!!

Connor did have some issues with his port and I talked to Dr. Soep's Nurse Michelle about it and we will keep an eye on it and if he keeps getting low grade fevers as well then they will order a blood culture to see if he might be fighting an infection. He will have his infusions again tomorrow morning so I am hoping that the access to his port will be pain free this time around. We also have a new schedule for Connor's next IVIG which is planned for May 6 at 8:30 AM, he will also have a Dermatology Appointment while he gets his infusions that day to have a look at the multiplying warts on his foot. Remember he started out with one when he first showed symptoms of JDM? well I am as of now counting eleven! Dr. Soep also put an order in for 6 more months of IVIG, so we are booked until October :)

So and then the sad part that I am facing this week is Niki and Harlow leaving yesterday and on Friday we have to say Goodbye to my Mom and Dad. As always this will break my heart and I so hope that we convinced them all enough to try and come back here in June or July.

Today, my Mom and Dad had a wonderful one hour massage at the 'A Rub Above' that included time in the whirlpool as well and I got treated to watch AVATAR while waiting for them :) Ron also took Connor to see the Psychiatrist today and I guess it went well but Ron told me that Connor acted bored throughout most of his one hour session. Ron however did get a report from the Doctor about his assessment for Alexander last week. Remember how I wrote that he told us Alexander was a VERY active child? Well he told Ron today that Alexander matched 7 out of 9 markers for BOTH ADD & ADHD. He however also said that this is not a bad match up because when you can get some control over it then most children with this are extremely bright. Well that alone is not a big surprise to me because as you might know my boys are of course very smart and bright :) I will now go in next week and talk to the doctor to see what our next step will be.

Before I finish my blog for tonight I do have to say that I am not happy in regards to Connor's Speech Therapy. When we stayed at TCH in Denver, of all three therapies, Speech was his favorite at times because he did not have to move and they played games with him while he had to sound out words. Since we got home the one therapy he truly dislikes the most is Speech. I do believe it has to do with a personality clash. The Therapist that comes to our home is more pushy and also critical. Today I came home right when she was leaving and what I found was a son that was in tears and feeling miserable. He said she thought he did not do his home work (which is NOT true) and then she wanted him to say 'Ladder' and 'Truck' and he was told that he was unable to say them right. I listen to him say 'Ladder' and it sounded fine, now 'Truck' did not, so I know he needs help but why be so critical to him instead of trying to turn it into a game? Needless to say, he does not want to have Speech Therapy anymore and Ron told me he will make a call tomorrow to see if we can get someone else.

I am feeling extremely tired today. I told Ron I think finally my body might be catching up with my brain. It's almost as if this fight we entered is finally getting to me and some of my spark is leaving. Maybe I am not angry enough anymore for me to go off on little tantrums on my blog - Ha Ha

Oh, and I almost forgot! This last Saturday was Ron and mine eleven year Wedding Anniversary. I can only say that I am so blessed to have married my best friend! I always write about our journey with JDM but my goodness what a journey Ron and I had until now ..... eleven years that never for a minute could be considered boring :)

Love,

R A C A