Half Full

While it may not seem like it, I am always trying to look at the full part of my glass.  Well, this morning, my coffee cup!

Cole is actually drinking his instant breakfast as I type, instead of throwing it at the dog and he is up 10 ounces in the last week and a half.  Although he's still off the charts, he's moving in the right direction.  I'm not exactly sure what he's liked this past week but at least I've cooked or baked some winners.

Vials sent, sealed, and delivered fine.  Fingers crossed, blood marker results from Philly could be in as early as this afternoon.  From there I can only hope if the anticipated genetic tests are ordered the paperwork goes smoothly and approval is swift.  Cinci blood work will be a little longer, but I can be patient for a week, that isn't all that long these days.

Miraculously the car repair was not as bad as we feared, thus no more worries of being stranded on the side of a hot road with three kids.  Luckily, Nick's got a great partner at work who he happened to be carpooling with all summer, so there was no scrambling for a vehicle for our multiple medical commutes this week.  

In addition, it has been nice to spend some time outside in the sun with some very healthy friends.  After a long lonely winter, with little more than phone calls, a few of the girls' friends have come to swim.  They've had to stay outside, just in case, but Cole's afternoon nap has given the girls a little bit luxury where we have not had to say no for a change.  Due to my own appointments, they've even had a wonderful day with kids away from home, thanks to my friend Lori, brave enough to take them to art class, the playground, and then let them invade her house for the day with her own two kids, even though my #2 can be quite a challenge with hers.

We are still hopeful that I will be able to get back into my classroom this fall.  It is such a challenge to make decisions when you are still waiting for information.  I am so fortunate to be in a career where I have been able to take as much time as I have, and am optimistic to jump right back in with my colleagues, who I miss tremendously.  Again, I know I have changed over this journey, and know these individuals will treat me the same as before, which is all I want.  I don't want to be looked at as a sob story, because you know what, I don't feel sorry for myself.  We've welcomed one really cool kid into our family and he has opened our eyes to a different world.  I would never change that.  He just happens to have some hurdles to jump and needs our help, that's what parents do.  The team I work with is amazing, like a family, and I've been lucky to have them as co-workers and friends, and love that when I see them, it as we are picking up where we left off.  Looking forward to it on a regular basis somewhere on this road.

As a very proud, independent individual I have always wanted to do things myself because I could, and maybe I just don't want to seem weak or dependent.  I know many of you have generously asked what you can do, and honestly, I believe we are doing ok.  But the few times I have needed something and was just too darn stubborn to say anything, I am lucky to have people who just said they were doing this or that, whether watching the kids, dragging me out, understanding I was too tired for plans, or volunteering to take me to appointments for myself.  I am so thankful for you, and for those who really want to help, don't worry, I am not so shy or proud anymore that I will not ask, but am saving my requests for the days when I just may not be here to help if and when we are finally sent to Houston or Boston.     

Right now, your love, friendship, support, and understanding is all I need.  Knowing what I have in so many of you and the laughter of my children is what keeps me smiling past the rough patches.  That and, while it is cold, my coffee cup is still half full.

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.

Dips

Hi, my name is Liz and I am a dip-aholic.  It has been a little over a month since my last dips.

Until tomorrow.

Tomorrow marks operation dip discovery day one.  Cole will have it all, veggies and dip, fruit and dip, bread and dip, and even pretzels and dip!  According to the nutritionist, the higher the fat content, the better.  I'm primed and ready to offer him as many dips and dippers that it takes to get him interested in dunking and ultimately, eating.

With Cole's consistent weight loss, it is imperative for him to start gaining as quickly as possible.

Unfortunately for me, it means leading by example.  My arms really don't have to be twisted all that far to plunge peppers into cold creamy deliciousness instead of just gnawing on them naked.  Too much of this will only translate into trouble for my trousers!

I need your help.

Please comment below or send me your dip recipes and ideas, because I will need to pull every trick out of my hat to keep this kiddo interested and to him variety really is the spice of life.

And hopefully, as he gains, this weather stays nice so I can just keep myself moving so I do not face the same fate!