'Normal'

[Phyllis Ann Talbot]

Just realized how long it has been since the last update - the good news is that it's because we've been so crazily busy doing 'normal' things - there's nor much crazy medical stuff to tell!

Bill and I had a great trip out to Park City (for all of 18 hours) - Hyde ended up not going - there was some concern at the last minute due to the how high up the resort the meeting was being held was - over 8500 feet and they had a few folks with altitude sickness so we all decided to err on the side of caution. It was actually easier for Bill and I anyway - actually got to read a book for the 6 + hours in the airport and on the plane each way - not quite that relaxing if we'd have been chasing Hyde ;-). It was great to meet all the folks from alexion and Bill and I spoke to 200+ of them during a session - they all seemed genuinely interested and concerned in all that we had gone through and we were very happy we went.

We were back for one day to celebrate Ruth's SEVENTH birthday! (where did the time go?!?!) and then we turned around and headed to Iowa for the conference we went to a couple of years ago and got to reconnect with all of our AHUS 'family' that we've only spoken with on the phone and on-line since the last conference. It's always so great to get to talk face to face and also be reminded of the amazing dedication and care by the researchers and clinicians at the University of Iowa - daddy always said the field of dreams was in Iowa - but I didn't know it wasn't related to baseball!!

Other than that things have been great - kids having fun at school and in soccer (though Hyde doesn't seem to understand that soccer isn't football and there shouldn't be any tackling in soccer - we've had a couple of pushing incidents and one total takedown - and I was worried about everyone being too rough on Hyde - good grief!!!)

Hyde and Ruth (aka Super Mario and the Greek Goddess) had a great Halloween - thanks as ALWAYS to Uncle Warren - Hyde had his first experience of totally gorging on chocolate like all the other kids! It also brings me to how Bill and I realize more and more each day what an unbelievable gift Warren gave Hyde - he really is like a new kid - and I don't mean his different - he's just like Hyde plus. Not sure if it's just hitting us because of the gorgeous weather here - but Hyde is outside almost all the time playing with all the other kids on our street for hours on end. He's outside playing until I make him come in to eat supper, and then he tries to go back outside - even to the bad where he just disappears without telling me anything and it's because he'd been knocking on doors to see if kids can come out and play - it makes me happy but also gives me mild heart attacks so we are working on making sure mommy knows WHERE he is going, etc. ;-) Hyde is just doing so well and we want to thank you ALL for all the thoughts and prayers that have been sent his way over the years - he's just loving life and that makes us so happy. Warren - there just aren't words to express - you literally gave Hyde this normal life - we love you!

The other fun thing is that Hyde was nominated by our children's hospital to be the VIP (Very Important Patient) for the Pink Pig Preview last week. For those of you not in Georgia this is just going to sound strange but the Pink Pig is a longstanding holiday tradition here in Atlanta that started in the 1950's at the Rich's downtown and is now continued by Macy's at Lenox Mall. It's basically a train ride and is put on by Macy's as a fundraiser for CHOA and has raised over $400,000 for the hospital since 1993. Ruth and Hyde got to go down and get all new clothes for the event from Macy's - was supper easy for Hyde - he would wear anything and he was in love with his tall lace up boots and his belt - go figure. Ruth was a different story (coulda told them that!) She loved a pair of boots the lady from Macy's wanted her to get but she didn't think they went with the outfit that had been picked out for her - seriously!!! I told Ruth that if the nice lady from Macy's who is PAID to put together outfits said it matched, then it matched - jeex louise!!! She finally agreed and they looked gorgeous! Here's a link to a couple of bits that ran on the local morning show - Hyde even got to talk!

http://www.myfoxatlanta.com/dpp/good_day_atl/FOX-5-Storm-Chaser-Vis...

We are headed to Maryland in a few weeks for Thanksgiving and finishing up soccer in the meantime - Hopefully Hyde won't get kicked out of the league before then!

thanks!

Bill, Phyllis, Ruth, and Hyde

[Cheryl Biermann]

How much fun!  Totally relating to your energetic Hyde...Nathan disappears and since the one kid on the block his age is pretty much a couch potato, I find him glued to Wii Boxing, or Wii running or X-BOX battles, drenching with sweat!  Not the heart stopping event of a missing 4 year old, though!