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Tuesday, October 21, 2008

Hard to leave

I am leaving today for Minneapolis and will be gone until Sunday. I will be doing some work for a client as well as meeting some old friends. In the planning stage I was excited to go. But now, as I wait for the cab to take me to the airport I am sad. I always feel this way when it comes to travelling alone. At first excited for the adventure and then upon the point of departure, really sad. They are very hard to leave, Ellie and Dave.

I tried to tell Ellie about it this morning but it just didn't compute. Time is a weird thing to communicate about in general then try to do it with a 5 year old. She didn't want to leave me when Dave came to take her to the car and I feel really, really bad that when she get's home I won't be there. When she wants to snuggle in to go asleep on my lap like she does most nights, I won't be there. I am worried about Dave too. What if she is up every night like she has been for the last week? What if he is so tired he falls as he is carrying her down the stairs in the morning? What if she gets sick? She was a little not herself yesterday, and here I am leaving.

I guess it's a good problem to have, two people that it tears your heart out to leave. There's my cab. Can I not go? Just say never mind? Nope. Sigh.

*picture is of Ellie sitting independently on the couch playing with her farm toy in her jammies.

Sunday, October 19, 2008

It Doesn't Take a Saint

I was having lunch with a colleague of mine. We started talking about our kids. I mentioned that Ellie was doing really well in school and that we were really happy about it because she has come so far. They agreed and nodded and then said, "You're a saint."

I said, "No, NO! Definitely not. Ellie's a great kid, probably a lot easier to deal with than a lot of kids."

But ya know, I wish I had said something more to the point like, 

"Do you really think you have to be a saint to love your own child if they happen to be disabled?"

And then, in an ideal world, I would have quietly waited for their answer. I am sorry I didn't have it together to say that instead of babbling like I did.

Because isn't that what that comment means? You're a saint because only a saint could love someone who is imperfect or drools or is just basically in that other category most people don't like to think about. Like you have to be Mother Theresa or something (no offense to Mother T.) but jeez!

I remember one of the other mom bloggers writing about that. But this is the first time it was ever said to me. It just seemed so out of context. One minute we were talking about our kids, the next I was defending my child's loveableness.

So for the record - it doesn't take a saint to love Ellie. Not even close.

Thursday, October 16, 2008

Beautiful Ellie and Beautiful B.

There is a little girl who moved in a couple of houses down from us several months ago. Her name is B. She looks to be around 6 ish. She is shy and just stares at me whenever I say hello to her.

She loves Ellie.

Two days ago, Ellie was out for a walk. Whenever Ellie goes out, if the neighborhood kids are around they always come up to her. And when I say that I mean they come up really close to her and say hi and want to push or explore her Kid cart/wheelchair. They are alway so enthusiastic to see Ellie. I know they wonder where she is when she is not out and about. I think sometimes they worry about her but like kids do in that totally pure, nonjudgemental, your life is hard kind of way, but more so in relation to her place with them, whatever that is.

Ellie used to not really pay too much attention. But lately she stops doing whatever she was doing like reading signs or playing with her Raggedy Ann doll who always likes to go for walks too and she will look at the kids and sign hi. She is rivetted by them. This is such a nice indicator that she is maturing.

Two days ago B. asked Ellie what she would be for Halloween. Ellie didn't answer. Undeterred by this B. suggested that Ellie be a fairy princess. Then B's eyes lit up and she exclaimed, "No! You should be a Rainbow Fairy Princess because you are more beautiful than just a fairy princess!"

Saturday, October 11, 2008

Reality Check: Still between a rock and a hard place

We had to start Ellie up on the Cisipride last night. And ya know, I am sad about that. The doctors said she had to discontinue it on the 5th for the surgery on the 8th. We did and found her to be none the worse. But Thursday she was a little gaggy and up all night, not vomiting, but refluxing and in pain. Last night and Friday, more of the same. Such a bummer. I was really hoping to get her off the Cisipride.

So in truth, it's the meds AND the food combining no sugar, low acid diet AND the Slippery Elm that are keeping her esophagus safe and healthy. Which also tells me that her reflux is THAT bad that she needs all of that still. The small bubble of hope exists in the fact that we have not upped her medication dosages on the Cisipride, Protonix, or Zantac in over one year. Will she grow out of needing them some day? That' s a question that can only be answered by looking at her brain damage and believing and brain plasticity and hoping that some of the alternative therapies we do with her help heal her brain. Hoping too that stem cell research will continue and find a cure for brain damage that is with out the risk it is today.

Signing off, from Earth, feet on the ground, trying to see it how it really is.

Thursday, October 09, 2008

So much to catch up on, so little time

Ahoy thar me harties!

Can you tell who I have been spending a lot of time with?  Ellie loves it when she plays that song on her Wiggles guitar and we go along.  

Ellie has been home today because of her surgery yesterday. Who ever said there are no side effects to ear tubes got that dead wrong. Just like ALL other child medicine decisions there are crappy trade offs. CRAPPY. We had ear tubes placed when Ellie was 18 months due to chronic ear infections. I think her mild hearing loss is due to those infections. So we had to do it. I do believe we made the right choice. 

Fast forward to 4 years plus later - (sorry not in the mood to do the math) and we get to learn about yet another medical condition - Cholesteatoma. Where the pocket left by the long since fallen out ear tube has become an area of negative pressure and is creating a keratin build up in her ear (basically dead tissue) which becomes a tumor of sorts that will eventually grow to a size that can destroy those three lovely little delicate ear bones that allow us to hear. Great. 

Hence yesterday's surgery to remove the Cholesteatoma which is a very involved thing because they have to remove the keratin build up -which is simple - but then cut a little bit of cartilage from her ear and put it where the negative pressure pocket is - like a little wall that will stay straight versus concave and keep dead cells from building up again - roughly a 2-3 hour surgery.

Her G.I. doctor, whom I adore for the record, jumped in on this and scheduled an endoscopy too. He has wanted to do this for some time, but I have been holding it off because you have to go under general anesthesia to do it, and general anesthesia, as well as elective surgeries are two things we scrupulously avoid.

Yesterday was the day. We went in at 10 and Ellie was prepped with us. She was starting to get upset by 11am because she was hungry and because she understands almost everything that a normal 5 year old would and she knew something was coming. I was very pleased when the anesthesiologist asked if he could give her some Versed through her g-tube to help her relax and not be traumatized by the mask they would put over her face to put her out. With in 10 minutes of getting the Versed, Ellie was smiling and would allow us to put her on the bed and she had a lovely stretch. Cute in a weird, this is wrong, kinda way seeing your 5 year old on drugs. But she's a happy drunk. I was glad that she was relaxed going into the operating room.  I walked her to the door of it, as far as they would let me go.  Ellie was sleepy at this point, and I kissed her and they wheeled her in. After the door closed behind her I burst into tears. I felt out of practice. Things have been going so well. I still, like any parent, HATE seeing my kid being wheeled on a gurney to the operating room. It's an awful, horrible pain in the heart.

I went back to Dave who was gathering up all our stuff (Ellie's stroller, toys, clothes, etc.) and I was still crying but trying to hold it in. It wasn't like I was wailing or anything, just looking hard at the floor and I could feel the blood in my face and the tears were streaming. A really nice nurse closed the curtains and I took a minute to get it together.

We went to the waiting area and  - waited. That wait. It's a particular kind of waiting I will never, ever miss if I never have to do it again. Every time the nurse would come out all the other parents would look up hopeful and fearful at the same time for news.

Then, abruptly, 45 minutes in, Ellie's ENT surgeon came out. Dr. Trevor McGill. He's from Ireland and has a Dublin accent. He's older, gray haired but spry and energetic. He looks 10 years younger in his scrubs and cartoon character surgical cap than he does in his street garb, which frankly is rather Irish priest-like gear. But he comes out with a picture of Ellie's inner ear.  They had removed the Keratin to find that the pocket of negative pressure left from the initial ear tubes was not as concave / deep as they feared. His proposal was, instead of doing the full on Cholesteatoma, which is a 6-8 week recovery time, they would instead place a new ear tube next to the pocket which would even out the pressure and basically buy Ellie some growing time. The theory being that adults don't get Cholesteatomas...

After a short discussion, because we were very conscious that while we were discussing, Ellie was unconscious on the table, we signed the consent form to do this. However, writing this now I almost wish we had said no. No to both the  Cholesteatoma surgery and the new tube placement. No because if the Cholesteatoma has not gotten any worse - maybe it never would have gotten worse. No because what if when the new tube falls out the same damn thing happens? No because - it just sucks to have to make these crappy, invasive, put silicon tubes in my daughter's head choices....

I hope we did the right thing. I really do. But that's the thing about being a parent in this situation, I at least, am not 100 percent sure, 100 percent of the time that the choices I have made are the absolute best that I could have for Ellie. And that is with trying my hardest and doing my homework. It's just the awful nature of it.

The good news is that her recovery time is much less and the whole tumor growing in her ear is gone. 

About 45 minutes later the G.I. surgeon came out to give us the news of Ellie's endoscopy. An endoscopy in this case is when they put a scope (small camera) down Ellie's esophagus into her stomach and into the first part of her intestines to take a look as well as some tissue samples. The really good news here is that Dr. Fox, head of GI at Children's Hospital Boston, said that he didn't see any irritation. That her whole tract  as far has he could see looked great. Better than most peoples'. To all the doctors who have scoffed at her diet and even to my GI doc whom I really like but has still been so worried that Ellie's esophagus was rotting away because we never got her the Nissen Fundoplication - I really do have to take a entirely, smug, poor form human moment and shout     HA! 

I also, when I get off my scales of justice have to think it is the Slippery Elm - that no one seems to understand but the herbal folks and health food store junkies. Slippery Elm has to have been the thing that has helped Ellie's digestive track heal and be healthy. That and her no sugar, low acid, food combining diet. It's all working - really well. So HA HA HA!

OK - yep rather a few human moments there. 

The great thing was too that instead of having to stay over night on serious pain meds Ellie got to go home with us. Today she wanted to watch videos and snuggle and was tired but kept all her food down and wanted to play. We have been controlling the pain with Tylenol and she has been a pretty happy, if not tired, little cutie pie.

I am almost done grading papers etc. and I need to post pictures of Ellie belly. She is now 36 pounds! 36. I can't believe it. She is growing and there is so much of her to hug these days. And when she is not having to deal with surgeries she is doing great. We have come a long, long way and I am thankful. There's nothing like seeing your kid wheeled into the operating room to make you feel 1,000 times more grateful for their existence in your life than you were before - even if it's hard to believe that is possible.