Today

Today should be interesting to say the least.

After finally tucking myself in after midnight, Paige was still awake with Nick. I have about ten minutes before I need to wake her from her sleepy slumber. She is the last of the kids I like to have deprived of her rest, she is downright GRUMPY! However she was thrilled that a doctor told her to stay up as late as she could just this once. Easy, successful prep.

For years, Paige has woken at night. Not just a quick stir, a someone is stabbing me, terrified screaming, kicking, thrashing kind of nightmare wake up. The worst part about them, is that she does not fully waken, and does not remember a bit of it in the morning.

Initially, we were told it was night terrors, she would grow out of them. Once she started yelling about her legs, the belief was they were growing pains, and they wouldn't last too long. Now with the onset of her migraines, the neurologist we were sent to feels there may be a connection, thus the tests this morning. While she knows what to expect, I know she is nervous, especially since she wants to bring Pooh Bear with her. Hopefully he can go with her.

When she is finished, I need to come home and trade kids.

Cole needs to go to see immunology at the hospital. We had an appointment for this Thursday, but since he developed chicken pox like bumps across his torso, thighs, and a few other random places, in addition to a fever, they wanted to see him immediately, with the first appointment available we go today. We were given a list of reasons to go directly to the hospital, but so far he seems ok, irritable, but ok.

Very hopeful for a few things today. First, that this is not chicken pox. Secondly, that we finally have word from Houston as to what direction we need to move in. We've had test results for almost a month, yet not the analysis, so with any luck, today is the day the next leg of our marathon will start.

Time to play my role as mommy alarm clock! Have a great day everyone.

But

Never has there been a contradictory word that drives me crazy like the word 'but'.  It's a nails on the chalkboard kind of crazy or like my apostrophes gone wild pet peeve with my middle school students who sprinkle their writing with them as if they are topping an ice cream sundae.

So when our immunologist started off with a positive, I waited for the other shoe to drop after she uttered the word 'but'.

To begin, we were told the good things Cole has going for him, that most of his immune system was wonderful, but there was a key part of it that does not function.  This means that there are a particular class of viruses that could be life-threatening to him if he were to have exposure to them either directly or by the rest of the family having contact with them and bringing the shedded germs home.

However, due to the rarity of this nk cell dysfunction, the relative new nature of studying this disorder, as well as the limited amount of research in kids Cole's age, the actual diagnosis may not be solidified for another year. Before they will confirm this disorder with any kids, they usually have a least a year of poor nk cell tests, or at least six tests.  At this point, Cole has only had two.  Doctors also want to rule out the possibility that these results could stem from his g.i. disorder or class of drugs they are treating him with since there is a study that links the two with decreased nk cell function.  Once again, our physician is unclear since there is only an old study dealing with adults and the information regarding kids like Cole and their nk cell studies just are not available so it is tough to truly tell us if their is a link or if he can just be diagnosed.  For now, they are just classifying Cole as having an immunologic disorder. 

With the information we have, we also need to make some decisions about the level of risk we are willing to take with Cole's immunizations.  The majority of them are will be safe for him as they are killed vaccines, but any live vaccines can have life threatening complications for our little guy.  For example, if we do go ahead with the chicken pox vaccine and see one little dot, we need to take action immediately without waiting to see what happens because things could go downhill quickly.  At the same time, the benefit of the shot could outweigh the risk. Ultimately, we are gambling whether we get the shot or not.

Yet again, our immunologist has consulted another researcher.  This doctor is in the process of leaving the east coast for another position in the southwest.  If Cole's blood work next week shows he has not started to form and antibodies against the herpes class of viruses like chicken pox, Epstein Barr, etcetera we may need to meet with this doctor as we move forward.

In the meantime we are to do what we've been doing, keep up the limited exposure to everything, monitor what our older kids are exposed to, and wait.  At least the weather is incredible so we pace a different perimeter.

While we continue in the holding pattern, we are desperately trying anything to bulk up this boy.  In the past week he has continued to lose weight.  Not much, but it is still a loss despite the various high calorie/ high fat foods we have been offering him.  There's about a week and a half until his next weigh in at g.i.  At that point, without a significant gain we may be discussing other measures to get him moving in the right direction.

Overall, despite the long appointment and time our doctor spent with us, the news was about what she had already told us.  On the flip side, there wasn't anything new or worse, so we are pretty thankful today.

Once again, I cannot explain the gratitude I have for family and friends who are there when we need you yet also understand when we have just needed breathing room.  Your messages and phone calls have often come at times when I've doubted my strength or patience in all this waiting and while I know all our changes and sacrifices are for the right reasons, when I'm frustrated at them you've reminded me this is where I need to be now.  Please know, in my heart I know this and I am absolutely sure we are doing the best we can for Cole, and if faced with these choices again, I would make them all.  Everything happens for a reason, and your love, kindness, and prayers are appreciated so much more than I can say.

Love to all.