Hi Everyone! You may have noticed that The Land of Noa has been somewhat silent lately. The truth is that events in the The of Jeni have overtaken my ability to keep up with this - and that will probably be the case for a few weeks.
Long story short, a few weeks ago diagnosed with very early stage, non-invasive breast cancer - having surgery on November 15 which may be followed by radiation (will know more once they get a chance to really look at what they take out). Of course this is all happening very fast and has left me scrambling to take care of things in the real world... while the virtual world just kinda hangs out waiting for me to catch up.
In addition to having them remove the Cancer, I'm also having a breast reduction. Why post this in the Land of Noa? Because actually, I've been dealing with some really bad shoulder pain for a year now due in great part to all the lifting and working with Noa and my orthopedist had actually already mentioned this as something that might help me - so it seems to have all come together to make this the right choice for me.
In terms of how this affects the land of Noa - the biggest, most immediate impact will be that after surgery I'm not to lift her for a month. This is difficult. Sometimes when I talk to people about the challenges of a physically impair child they say, "oh I know, little such-and-such likes to be picked up too." But truly, its just a different ball of wax when you have a 40-lb child who cannot get out of bed herself, cannot get from her blocks to the couch. Not only did it ultimately get me to the point of serious injury, it also means that to replace me for a month we have to pull together a small army of new Noa BFF's and HUGE thanks to all those folks who have stepped up. It is no small deal!!!
Noa BFF's have to do three days of training to be able to hang with her (kind of like training to work at Chili's). They have to learn her signs, how to stretch out her legs when they hurt, how to not hurt themselves picking her up and moving her, how to make sure she gets some exercise and how to make sure she doesn't hurt them (because throwing blocks at people and slapping them is a much favored game right now). So kudos and thanks to those brave souls!!!!!
My biggest concern is that she has been having a lot of discomfort in her legs. It started when she outgrew her leg braces and it's taken a long time to get news ones (we hope to have them next week). Without the braces, she doesn't walk as much - and the braces keep her hamstrings stretched out. Walking keeps her hips stretched out. When she doesn't get to walk enough, her body just doesn't send enough blood to the legs so they crap or get pines and needles - or - something - honestly we don't know what. She can't tell us so she screams bloody murder (seriously, I'm waiting for child services to show up - its like she is being stabbed) and thrashing around and we just try every stretch we can think of. Of course, I won't be able to help with this soon so I'm really really hoping the new braces come soon and that they help this somewhat. As you can imagine hearing your child scream in pain for an hour is challenging enough without the extra bonus of being entirely helpless in terms of even trying to help!
SO that's where we are this week. I have actually a blog now for my own upcoming journey:
www.carepages.com/carepages/jenimahoneyI suspect that most of my posting for the next few weeks will be on that site. Also, Ben will be able to update the site and let folks know when I'm out of surgery, etc...
Thanks to everyone for all their help!
Then we went down the hall where they have a huge Halloween Party every year. Although she's done okay at this party in the past - this year she was thrilled to be there. She did her happy dance (with screaming) and gave Ben and I big happy hugs.
