So far, so good Jody. Twenty-three actual months. Last labs were status quo with all that kidney function stuff. Now if we could get Gage to eat again, that would be helpful. Especially if he would eat a vegetable – ANY vegetable. It would be great if your kidney could channel that desire.

Even without that, we’re pretty amazed still that we’re about to hit the 2 year mark of normal kidney function for the boy. I’m happy to say that the struggles Gage has had didn’t have anything to do with bad labs for kidney function. Because if that happened too? I might completely lose it.

But really, nearly two years? Can you believe it? Something about time flying and not flying that makes all of this unbelievable. Thanks Jody, my time-flying-not-flying partner.

I have to go…I need to go work on next month’s TWO YEAR anniversary post.

Love you and your perfectly behaved kidney,

Gage’s grateful mom

My baby girl, Quinn. When did she grow up to be seven? And when did she start back talking so fluently? I clearly remember her needing speech therapy. And I specifically remember telling the speech therapist we didn’t want any back talk.

I am making some progress on her transplant. Letters and calls and emails and voicemails.

When this photo was taken she was about 5 days old. A gifted artist friend, Kathy had come over to take pictures for the (award-winning, might I add) birth announcement. I love this picture of Quinn. When this was taken I was so happy and proud to show off my girl. It was one of those few non-kidney related moments during a long time of The Fog that I remember with clarity.

Now, 7 plus years later I’m looking at pictures of my girl and I can’t believe I have another child facing a kidney transpalnt within 24 months of the last one.

But she sure is cute, isn’t she?

Excerpt from Trauma Through a Child’s Eyes (By Peter A. Levine and Maggie Kline) reprinted with permission from publisher.

Our Misunderstood Students

Because trauma is so prevalent but so misunderstood, so too are the children who are often living in a daily state of terror. Or, even worse, they are numb and unresponsive. Already anxious, these students find that the unpredictability of classroom demands and playground events heightens their arousal to an unbearable state. What might seem like ordinary stress to another student can be perceived as a life-or-death struggle. Vain attempts may be made to gain a sense of control by blaming others or through temper tantrums. The dilemma lies in the fact that for those suffering the effects of trauma, the threshold for tolerating sensations generated internally has been compromised. Because of this it may take very little external provocation to upset them. In fact, to the outside observer, it may appear as if antecedents are absent.

Without knowing the basic dynamics of trauma, educators have (naturally) been perplexed about how best to handle troubled students. Typically, these students have ben relegated to “catch-all” classifications such as conduct-disordered, ADHD, obsessive-compulsive, or even mentally ill. They are typically separated from their classmates and placed in special classrooms. Often they are labeled as “Emotionally Disturbed” or “Learning Disabled.” Frustrated teachers or parents may insist on medication as well. These solutions do not resolve the underlying cause of the problem; they are akin to watering the leaves of a dying tree while ignoring its roots. And often, these placements and labels can be a huge dis-service to students already suffering from overwhelming fear and rejection.

I had this post finished, but wanted to sit with it for a day and I’m glad I did. Because I rewrote it completely.

Gage is (Thank the Goddess) served (very well) by our special education department. Gage is labeled as “Other Health Impairment” but he is “Learning Disabled” because it takes him a long time to learn. And it takes a lot of people and a lot of behavior mod systems and time, time, time. Gage was born with Ocularmotor Apraxia (OMA), this is both confirmed by a diagnosis of a few docs who’ve seen it before (it’s rare, so not necessarily all docs have seen it) and by an ever-so slightly malformed piece in Gage’s cerebellum. For certain this impacts Gage’s learning as it is at the root of his learning challenges.

But the medical trauma? The trauma of hundreds of procedures has had its impact on his little soul. His near death experience? Has impacted who he would have been. It’s impacted how he feels about himself and how he projects himself. All of that experience – the big experience that has been his young life, impacts how he behaves. How he reacts to the world around him. How he interacts with peers, authority. It’s the reason I get the calls, the notes. It’s the reason for the charts and the rewards. It’s also what gets in his way of his learning. It’s the reason for my exhaustion.

We’re consistently working with Gage to help him find a voice about his experience and his feelings. As he matures, he’s beginning to understand the seriousness of his disease and treatments while reconciling the past experiences he’s endured. But we are a long way off from significant healing.

The scary side of raising kids with a disease or treatment or failure of a treatment that could kill them is that we never know what trauma is around the next corner. While we certainly don’t live each day with that sucky thought as our motto, it does make me wonder how the kids will do with their 2nd transplant or 3rd. Of the many struggles I face raising these kids in particular I worry most about their emotional well-being. Not easy or tear free. For any of us.

I’m sick, sick, sick. I think it’s a cold/chest/respiratory thing gone wrong, but one can’t be sure. Besides the kidney stones passing, I mean. Because those are more like actual labor pain. In fact, they are more painful than labor.

Today I pretended part of the day I wasn’t sick and did some cooking and 4 loads of laundry. I feel I have to do that because many years ago during one of Julian’s minor colds, I said, “Did you ever think that if you didn’t act so sick, you wouldn’t be so sick?”

I tried that today and you know what? It didn’t work.

I am behind on emails. Terribly behind. So sorry if I owe you one. You know who you are.

My mechanic called and told us the bad news. Even though they can fix my car (for $3,000) they do not recommend it. We can drive it until the engine quits (something about piston seals) but it’s loud and kind of my very own special version of The Clampets, Volvo Station Wagon Style.

We’re fortunate I can drive it for a bit (who knows how long?) while we really shop and compare another used car. My budget is under $5,000, preferably around $4,000. My current Volvo cost $3,750 in cash…and I’m going to miss her. She was trashy but dependable. You could throw up in her (Gage did many times) and she wiped down easily. She wasn’t the best looking car out there, but she held her own.

I’m going to miss her.

The appointment to see Dr. Wonderful started out kind of rocky. My beloved 15 year old car – who is showing some age, but aren’t we all – was not on her best behavior during our drive. The day before Julian had taken it for an oil change, for the extraction of the key in the ignition (not great for security) and for them to set my dashboard clock 5 minutes fast (they’d broken the knob during the last repair). The car had been fine until an hour out of the big city and then I found myself checking oil, describing the clanks/clacks over a three-way conference call with the mechanic and Julian. Julian wanted me to turnaround. If it weren’t for that pesky Quinn transplant 2nd opinion, I probably would have turned around, but I didn’t. The mechanic assessed the situation and said since there was oil and it wasn’t a tick-tocking sound… “I would just keep going,” he said confidently. Five minutes later, I was crossing the Georgia line.

As a sidebar…I know, 5 minutes fast you ask? Even though I KNOW the clocks I look at are all 5 minutes fast it still helps me somehow stay ahead 5 minutes. There’s not a 5 minute fast clock that I look at that I don’t calculate the “real” time for in my head. It’s kind of strange, now that I type it all out, isn’t it? I don’t know why – it just comforts me.

We got there with 5 minutes to spare. After the vitals and the nurse checking over meds and such we saw Dr. Wonderful. She noticed Quinn’s hand were extremely red and asked about them. Quinn says, “It’s because I don’t dry my hands good and they are chapped.” She gets this from me because that is what we’ve always believed. Dr. Wonderful mentioned a “Phenomenon” affliction with the hands and feet being red when they are cold and tentatively diagnosed Quinn with Raynauds Phenomeno.” *Don’t bother searching the term because it can look kind of scary as it’s usually secondary to other not great diseases/syndromes. So I’m kinda ignoring that part for now (as her head firmly go in sand for now). We know our kids are different and perhaps this is part of their now-only-documented-one-of-a-kind syndrome. Or maybe it is a side effect of a drug. Dr. Wonderful handed out a very long med paper on it and I haven’t read it yet. But I will. Basically, I think the treatment is to keep your hands warm.

Now onto the 2nd opinion part. We met with someone on the transplant team for a good long while and with Dr. Wonderful’s assessment they said it looked like they would move to transplant at their center, given Quinn’s other symptoms and her quality of life. I guess our center doesn’t look at the total sum of quality of life issues along with the numbers.

I’m a little surprised that I am not more upset about this. But we’re pretty happy with the transplant team at our center – you know – saving Gage’s life and all. The care Gage has received for his transplant has been really good (we can just ignore those few little incidents, okay?). Plus, I have to have an on-going, good, partnership relationship with them and it doesn’t serve me (or the kids) well to draw a non-removable, thick line. I will be working with them for many years and I truly want a better-than-good relationship with them.

As I stated before, I am an concerned this delay at our center will result in the need for dialysis. Obviously, I am not against dialysis – it kept my son alive until he could get Jody’s kidneys, but I think when we have the opportunity to give Quinn something different. Better. That we should try. Everyone who know knows Quinn should want that for her.

But their rules are their rules. And they have the right to say yes, or no, or maybe to a transplant time line. Luckily, I also have the right to seek a 2nd opinion and so that’s what I’ve done. There are, it seems, remarkable differences among different doctors, teams and centers. I know this from talking with other mothers who have kids who have had kidney or liver transplants. Our options would be to revisit Quinn’s current status (and see if the current quality of life issues are within the “move to transplant” parameters with our local team), or we could just monitor and wait until Quinn’s situation fit their criteria. Or we could try to get our insurance to cover an out-of-network transplant, which is the option I’m exploring at this time. I just got in the queue to get a case manager or nurse to discuss the situation and where to go from here (very helpful person at BCBS, I might add – as a shout out to my good friend Becky) and hope to hear from them in the next few days.

It would not be our preference to do an out-of-town transplant as it puts an unbelievable strain on the family both emotionally and financially. But it is not out of the realm of possibility for us to go this route. We’re fortunate Quinn’s Potential Donor #1 is willing to do this out of town, but I am pretty certain it isn’t her preference either.

Quinn’s new hand and foot “Phenomenon,” the car, the new cold I’m fighting, and the regular life things mixed in there with checking on options for Quinn have me wanting to take a break.

I think I’m going to take 5 minutes.

This is what we do to pass the time at doctor appointments.

It took us a while, but we finally got all the earrings (and other jewels you wonderful people sent!) unpacked and put up…it took a so long because there were so many. As you can see, my girl has some bling choice.

Thank you friends, near and far, and known and not known personally. Dawn, and the Internets People rock! She loves to change them every few days and match them with what she is wearing. She branching out to dangle choices and is very excited to have so many to chose from!

PS – Holly…thanks so much for your earrings for Quinn, she loves them!

PPS – To our secret Internets person who dropped off earrings at our door, thank you! Quinn loves them too! She kept looking at them saying, “Diamonds…” very longingly. I think we are in trouble.

PPPS – Jess, she loves the jewelry holder too! What a nice touch with that and the matching earrings for me!

PPPPS – I could go on forever about every detail of the earrings that she likes, meaning all of them…her initial Q ones, her oh-so-many flowers, stars, the colored stones, the lady bugs and monkeys and hello kitty and hoops! Earrings galore, see what I mean? Stickers and pens and note pads! And Erica, the box of goodies and the paper dolls? Too cute! Thank you again so much ALL of you!

I’d signed up a long time ago to receive campaign updates and get solicitations for bumper stickers for Obama.

Tonight, I said to Julian:

Me: “I just got an email from Barrack about the stimulus plan. It’s a good email.”

Julian: “He probably sent it from his new blackberry.”

That was really funny to me at the time it happened but now that I am seeing it typed out, it doesn’t look so funny. I guess it only matters that I think it’s funny since it’s my husband and all. We’re heading towards our 15th year of wedded mess bliss so I guess that I still laugh at his lame jokes means I must still love him. Or I really need to laugh.

Let’s talk about symptoms and why occasionally when I read this book (Trauma Through a Child’s Eyes) I have to close the book and cry. There are other lists…Hyperarousal Symptoms and Constriction/Freeze Symptoms that have symptoms Gage exhibits. Like aggression, diminished capacity to enjoy things, attraction to dangerous situations and exaggerated responses (um..affirmative on all these). For this post, let’s discuss just one list (I’ve * Gage’s symptoms from this list).

When Dissociation/Shutdown Predominates

While some youngsters live in an agitated, restless state, other may live in a fog. Often, children with unresolved physical and/or sexual abuse, victims of high-impact head injuries, and children unprepared for intrusive medical procedures and anesthesia typically manifest secondary symptoms that develop from the core symptom of dissociation.

When dissociation predominates, they symptoms may emerge over time:

• distractibility and inattentiveness *
• amnesia and forgetfulness *
  
• reduced ability to organize and plan *
  
• feelings of isolation and detachment *
  
• muted or diminished emotional responses, making it difficult to bond with others *
  
• easily and frequently stressed out *
  
• frequent daydreaming and fear of going crazy
• low energy and easily fatigued
  
• excessive shyness with time spent in an imaginary world or with imaginary friends

…This ability to dissociate is not willed. It is a phenomenon that allows a child to cope and survive through adaptive mechanisms that temporarily block out the pain. At home or at school, when dissociation is prevalent your child may appear to be daydreaming, stare blankly, be inattentive, or look as if she has her “head in the clouds.” What she says may not be congruent with what you see due to a defensive denial of reality. It is more difficult for the child to connect with other children, and parents may comment, “He’s in his own little world.” Such a traumatized child may miss the instructions at school, be labeled “attention-deficit disordered,” or frequently be known to ask, “What did you say?” as they gloat in and out of present-time awareness.

The reading (and absorbing) of this book has been hard. It’s the confirmation that all that I thought was happening (a serious impact on the psychological well-being of my son) to Gage was indeed happening. It’s also confirmation that all that I was doing during the time of the “intrusive medical procedures” to help Gage cope wasn’t doing nearly enough. It’s sad to think that I couldn’t help my son. I couldn’t help him process his experience in a way that worked for him.

Who knows? Maybe he’d have been much worse off at this point if I hadn’t done what I did. I did what I could do, with the information I had at the time.

The truth is, I am not sure if I could have helped Gage navigate his world any better in a way to make his symptom list any less. His personality directed the path I took at the time. And the sad thing about all of this is that maybe all I could…well, can do, is damage control after the fact. I mean to take a situation that is very detrimental to the long term well-being of my child and just survive it with enough stamina as his parent to help him cope with the aftermath.

Part of what I have learned over the 10 years of raising Gage is that I have to first listen to my intuition. I am certain that Gage knows I am his advocate but only because I have allowed him to see me over the years advocate for him with a strong voice, a sometimes laughing voice, a sometimes crying voice — whatever the situation demanded. I am also sure I didn’t always do this. Early on I think I made some mistakes and he’s paid for them. But there are a couple of experiences that he and I have endured that are constant reminders that I should always listen to my intuition. Sometimes letting him see me fighting for him was all I could do and it was enough.

This book sometimes stares in the face of that intuition and challenges it. It sometimes tells me that I was right and that I might have been wrong. But I think part of what makes me the right parent for Gage is that I’m willing to keep doing it (whatever “it” may be) to help him the best way I can, with the tools I have (and can get) to lessen the long term damage.

It all – this experience raising chronically sick kids – can be so hard it feels overwhelming. Because I am just an average person, an average mom, with average skills. I do sometimes wonder if I am enough.