Late Night Ramblings...

If you happen to notice the time of this posting-it is late at night. The ONLY time I seem to have lately to jump on the computer and try and catch up on blogs, Facebook, mail, etc...tonight I blame the late hour on too much Coke Zero and enjoying the quiet in the house since all SIX kids are sleeping, lol (yes, six!) My niece and nephew are spending the night tonight and it has been so much fun having them over. Today (June 9th) is my nephew Kevin's 14th birthday! Happy Birthday Kev-you are such a good kid (can I still call you that, lol?)

Connor is doing really good. He is loving his special toys-mostly Play-doh and playing with bubbles. He plays in the sink when I have soapy water, outside with his bubble containers, and especially bubble baths! He says "bubbles" so many times a day, I lose track...Still so good to hear him babbling and making real words.

Kevin had his birthday pool party this past Saturday and all the kids had a wonderful time-Connor gave us some cause for worry when he refused to wear his bathing suit for the festivities...I guess when you think about it-you take off your clothes for a bath, why not for the swimming pool? :-) Luckily it was mostly family and we did finally get his Thomas trunks back on him...And I have some funny pics to embarrass him with when he is older, lol. He was fascinated with a bubble machine Aunt Laurie had going during the party-it was a purple octopus that is battery operated and automatically blows bubbles-it was a hoot watching Connor chasing the bubbles!

Samantha started at her new ballet school and is really enjoying all the one-on-one attention she gets (easy, since there is only 3 girls in the class including her) Ryan and Stacy are keeping busy with their cousins, reading, and going to the movies a lot.

Connor began his new speech therapy sessions with a new teacher who is very sweet and he seems to like a lot. So far he has been twice and both times did very well-considering she is still new to him. He is going twice a week this summer and as always I tell myself how good it is for him to be meeting new people and going new places in preparation for August when he will be experiencing LOTS of changes in his routine when he goes to school for the first time.

No more hospital until the end of June :) when he goes for his regular IVIG appointment...this months steroids were rough on him again, so any break from more owies is welcome. He had lots of rage this time around and the joint pain along with it...his sleep has really been going downhill (common with OMS) and this certainly didn't help. We are waiting to hear back from his doctor right now about what to do about the issues. We had our appointment in Atlanta with his neurologist-but he gave us no answers and we left being told to consult a psychiatrist on medicine issues-NOT the help we were seeking, or what our doctor sent us there for in the first place...I am trying to see the positive in it though and if he didn't feel comfortable having Connor as a patient, then I am glad he came out and told us to find a new doctor.

We went to the Coca Cola Museum in Atlanta after the appointment. Ryan and Samantha enjoyed it a lot (we were minus Stacy, she opted out this trip) Sam and I didn't enjoy it much due to Connor's reaction to the museum (he cried the entire time we were there) We felt bad later, we timed it just terrible-right after a dr. appt, right after steroids, and when he was most likely hurting...at least two of the kids had fun...these days fun seems to be hit or miss depending on how Connor is doing.

Startling news this week about Patrick Chance, he has relapsed with NB, after a year in remission...His parents are ready to fight all over again and are making plans to fight back hard! Please pray for Patrick and his family.

Also, Super Ryan and his mom Missy need your prayers as well. Both of them are having so much pain, and are in and out of the hospital constantly. May God ease their pain and give the entire family peace and hope to get through these hard days.

Love,
Deb