Hello from winter again

[Guest guest]

Hi all. Thought I would send a note and update you. SW ND had 12

inches of snow yesterday! We got about two inches. The snow is gone

and should be up to about 60-70 by Sunday....Hopefully spring is here to

stay.

I finally got ahold of Cincy....the nurse coordinator that I was working

with had emerg. surg. Dr. Bl...is out until Monday. I am calling U of

Minn to get the records faxes there and go from there. I will also mail

the rest of the paper work that I have on to them, so they can

review that. This other coordinator will get things set into motion and

hopefully I will be able to get an Angel flight. I may try to call NWA

and talk to the coordinator about a Kidkare flight. I don't know if my

ped will sign off on that....as he feels " we're managing ok " and

thinks he will out grow this, yet when I ask for specifics....he can't

give me any....

I know my son isn't as sick as some on here....we've done much better

this year....I can handle it, but just want a little reassurance that

this is the way it will continue, before we make any changes in regards

to Job/daycare/school, etc......

I wrote a letter to Dr. K at U of Minn to ask for some clarification and

express my concerns. I will get that sent today.

As for , he did develop a mouth sore on Monday, but that is healed

today. He really doesn't want to eat much but will drink his

pediasure......I still try to get him to eat, but so many days he won't

have more than a bite of things...I am trying to track his fatigue and

on Tuesday, he was outside with the kids for less then a half hour

(after a 3 hr nap) and wanted to come in and be held......I just don't

think that is typical and think that signifies something...None of my

other kids have ever wanted to come inside......Plus I had just bought

a new sandbox and they had new sand toys....UGH.............

Welcome to all the newbies....

Hope everyone is doing okay....

Marci, hope Aidan is getting better.

Pattie, the house looks great....I also had those OCD tendencies when we

moved in....knew where every piece of furniture was to go and had the

dust rag out and polished everything as they brought it in...In 4 days

we were essentiall done too.....gotta love it! I have a family reunion

in MD in Sept...don't know for sure if I will try to go...will let you

know.

Carey, Hope everything is going okay with the end of the school year and

Ben's graduation goes well.

Jan, you have a great outlook.....I am hoping to get some sort of a

diagnosis so that we can move on....just as you have..

( is two and had a horrible year last year, diagnosed with cyclic

neutropenia, then all kinds of other issues, in and out of the hospital

and lastly we were told he had an NK cell defect....now U of Minn is

saying there is nothing wrong....so, I am seeking another opinion in

Cincinatti, would love nothing more than to have a " healthy child " )

Kate, Hang in there. good luck on the " new job " hunt.......thinking of

you.

Tricia, hope vacation went well and Danny did okay...

Tonight is band night parade...will be cold, but Kaitlyn marches. She

recieved Student of the quarter honors....I leave for work

tomorrow....so, will probably be quiet.....

Have a good weekend.

, from the winterwonderland of ND