Happy 13th Birthday Princess Ellie!

Ellie on her 13th Birthday, November 9

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13!

How do I tell you about 13?

For the first time this year Ellie let us sing Happy Birthday to her and actually did a happy dance along with it. Then we sang the Hooray for Ellie song I made up years ago.  This is a big deal in that Ellie has been abhorrent to others singing to her in large groups for a long time. It's a processing issue that I think is getting much, much better. What's also gotten better is her vision. She no longer needs glasses. So my kid I brought home diagnosed deaf and legally blind from the NICU 13 years ago hears just fine and no longer needs glasses.  All signs of the brain's plasticity.  

Ellie got a certificate of merit for being independent!

Ellie is still leading me.  Lately she has been listening to the anthems of modern day teeny-boppers: Taylor Swift, etc. She loves composting her own songs and "DJ" music to dance too. She told me she wants to be a composer and a toy tester when she grows up. Heck, she really could be a toy tester now. The manufacturers would really find any flaws in their design. Ellie learns the whole toy inside in out by playing with it and finds any flaws and calls them out to us. And if the toy isn't working right in even minute ways she let's us know. She's got great concentration about how things work and patterns, etc.  Her memory has always been good but if you watch her play you can really see how she learns and categorizes and figures out how things work.

Age appropriately, she gives me the equivalent to the eye role when her younger personal care attendants are hanging with her. This year I should have gotten her a Keep Out sign for her door.  Go Ellie! ;-)

I am glad for her growing independence and lessening sensory integration issues.   

Happy Dance in celebrating her 13th ;-)

For those of you who asked about her orthopedic surgery, she is doing well. She has not yet regained her full range especially in terms of sitting criss-crossed. But she's getting there. I need to set her up with more PT and get her in the pool more too.  So that is coming. However, we achieved our goal. She has lovely flat feet that allow her to get in her stander every day and stretch those legs and un-squish her organs, build muscle and bone. Our first post op visit included the doctors admiring their work but also commenting how her tone has kicked right back in. Cerebral Palsy - the gift that keeps on giving (sarcasm here).   Her hip is no longer rocking in and out of the joint socket.  We have Ellie in her AFO's 22 hours a day. She is able to sleep with them on. She has two sets   - the night ones have more padding. We are committed to keeping her feet in working order so she can stand.   We are ready to begin with a gait trainer again so am organizing that.

Cool hat made by Auntie Chris

She is sleeping about 50% through the night but remains an early bird. When do those teenage hormones kick in?  Don't all teens prefer a lie in?? Ah well - the good thing is, as I get older getting up at 4:50am does not seem as bad as it once did. When I go into her room and turn on the light that love that bursts my heart is right there. On my mornings (Dave and I take turns) Ellie wants me to sit her up and snuggle with her and make her schedule on her light board for the day. She's still a love bug. 

A colleague recently suggested that sleep deprivation for parents might be offset by the rush of neurotransmitters like oxytocin and dopamine they get upon seeing and interacting with their child because of the love they feel. She suggested that this does not happen when you pull an all nighter to say, finish a critical paper.  I would love to test this and in some of the work I am doing I think I will get that chance so will keep you posted.  It's certainly a way to learn about this because as my long time readers know, appealing to the Gods of No Sleep has been an exercise in futility as they have their own agenda. ;-)  

Our beautiful girl, our true north.

In other news she is making great progress with her automated wheelchair. She can back up and go straight etc. It's tricky business to get one so that is another route to pursue. I also decided now that she is 13 she has to raise and lower her own bed which has a switch which she has resisted using. I want her to gain more autonomy and it's time to get rid of some of the learned helplessness.  No more g-tube. No more clubbed feet. No excuses not to roll, move and gain as much functioning as she can. 

Things that have not changed:  Ellie still loves to laugh and loves music and is adorable and a sweetie  - prerequisite teenage sass not withstanding.  She's still the soul that anchors me in this world. Happy Birthday my beautiful girl!







  

Happy Halloween from Ellie in Wonderland

Enough of the Hero Talk & Working Parents of Special Needs Kids

Ellie's left foot and her flexing her toes!

On July 22nd Dave took Ellie to get her groovy green casts off. And they did come off revealing no skin issues and beautifully elongated and more functional feet. The other amazing thing we are noticing this week is that Ellie is moving her toes more and differently than she was able to before. We went from worrying about feeling being lost in her feet to seeing she has more feeling and more function than before the surgery - which is unexpected and incredible and I am truly grateful for this happy surprise. You can use her flexing her whole foot here which she was not able to do before.

Then after letting her feet dry out and checking her many sutures they put casts right back on. She now has electric pink casts and still has to use the wedge and is on hip precautions until August 10. Ughhhh. Hip precautions means that we can't use her ceiling lift to transport her because the sling it uses makes her bend more than a 90 degree angle at the hip. She is a two person lift. What this means is that Dave or I have to be here to help the nurse or PCA we have on helping us. Did I mention we both work full time?

There is family medical leave act but neither of us have applied for that. There is a stigma in the working world that gets put on you if you have a child with special needs - at least in my experience. In my own job I was overlooked for a promotion because, and I quote, "We didn't think you would want the position because of your daughter."  I applied anyway and got the job. But it was a bummer not to be asked by the leadership team to apply when everyone else around me who knew of my work was saying, why don't they just offer the spot to you?  Well they didn't because I will always be that woman with the daughter with special needs.

So it goes.

New AFO mold at neutral. 

And I realize I am writing this juxtaposed to just sharing that we do have this issues with lifting her. Which means I will need to work from home when Dave is out of town. He can work from home because his employer allows that for everyone.  What this looks like is every two to three hours the nurse will say, "Hey can you come help me do a lift?"  He or I say, "Sure." Get up from our desk, walk down stairs to Ellie's room, help the nurse transport her into her bed from her chair, then go back up stairs. The whole process takes less than 2 minutes which is less time then it takes to get a cup of coffee or use the restroom. In fact, getting up from one's desk every hour to stretch your legs takes more time. The work effectiveness impact is minimal. There are many studies that show that working parents who have flexibility at work to say work from home, work harder and are more loyal to their employer than other employees.

My question is: How is this scenario different from a parent of a typical kid who is home sick?  Or a professional who has to leave work early to take care of an elderly parent? Or the worker who goes on 15 minute coffee or smoke breaks?  (Other than the fact that our helping to lift Ellie takes far less time than a coffee break.) We all have times when our work is impinged upon by family matters. Why is this so different? After August 10th this two person lift issue will go away.

The other thing I have been hearing a lot is that, "You are a hero!" People inquire as to how Ellie is doing and I tell them then they say it, "Well, you're a hero."

I feel bad every time people say that and they are saying it a lot.  It makes me feel uncomfortable. It makes me cringe. It is so isolating. It screams  - you are so different from me.  Your situation is so beyond everything that I will put you in this unique category over here where I can keep you at arms length. And it also says, your situation is so horrible you'd have to be a hero to deal with it.

Ellie's right foot, the most impacted by her CP.

I realize it's not meant to say any of that. The people saying it truly care and are concerned for us.  But all that the sentiment implies is wrong. My standard response back is, "You would do the same thing  - you really would if it were your child." And really, wouldn't you?  If you love a person you take care of them. It's that simple. No heroics needed. You just do what you have to do as best you can.

The other thing these comments imply is that Ellie is hard to love.  This of course is ridiculous. She's such a great kid and a sweetie pie and funny and yes she's having a rough time now but is handling it really, really well considering. I would go out of my mind if I had to sit there with a wedge between my casted legs for months. I, in fact did have braces on my legs like that as a toddler, and remember bashing a big hole in the wall by my crib with the screw that held them on as I swung my legs back and forth out of pure boredom and pent up energy.  Ellie can't swing her legs so she is essentially pinned in one position until someone else helps her move.

I know the hero label is meant as a compliment. And maybe I reject it so much in part as a knee jerk reaction from playground trauma that happens with girls in childhood. You know the one where one girls says, "You look good or you have pretty hair" And if you say, "Ya I do" or even imply that you agree them in the slightest you are ostracized. You learn very early the only correct response is to say, "No way, I don't look good or my hair sucks, it's so frizzy"

I know this is part of the cringe factor I feel when other women tell me I'm a hero and it's not because I think I am, it's because of the issue with labels and who is good and who isn't BS.  However, it's the arms length, let's set you apart thing, that bugs me more as well as the idea that taking care of your own kid through an injury (in our case TBI) is a heroic act in a world where many people are dealing with much harder things.

I think we should just leave the hero talk out of it. If I pull someone from a burning building or discover the cure for cancer or find the answer to world peace or a way to heal injured neurons - then talk to me about being a hero. And then I may say, "That's right!"

But parenting my own child, isn't that a given? In fact if I don't do that well then aren't I negligent or even criminal?  Dave and I are hard working to be sure but so are all good parents. If you are doing it right then you are working hard. The hero wall has to come down though. There are more similarities than differences after all between the typical world and the special needs world if we are only brave enough to look for them.

Sleep Deprivation and Resilience

This chair if really helping thanks to Liz!

 Ellie continues to improve every day. The casts on both feet, knee immobilizers and wedge remain until July 22nd at which point we hope the casts will come off but not sure about the rest. I think Ellie thought that once she got home the knee immobilizers and wedge would come off. She's made it clear she hates them as they really, really restrict her movement  - which is the point. She is coping with that and the pain really well. Liz brought over this Lazy Boy recliner and it has been a wonderful thing to have. It's heavily padded and gets Ellie out of the bed. Though in this picture you can see she has had enough. It's a hard thing and bummer of a way to spend the summer. I have had to be pretty firm about making sure she eats and drinks. She's so out of sorts in every way it's been hard to get back into any sort of routine.  As a result there has been very little rest for any of us. 

Her circadian rhythm is also flipped. She has been up all night and uncomfortable despite the pain meds since she got home on Friday. This is hard for us. In fact one of the hardest ongoing things about raising Ellie has been her inability to sleep through the night. I just ordered this light to help maybe flip her back to a proper rhythm.  Let's hope it works. I had hoped that approaching puberty she would start to sleep more like any good teenager - but not yet.  Still she is only 12.

She's also on some heavy pain meds that are messing with her sleep. We are stretching to dose from every four hours to every six today and it seems to be working. It feels like a long road ahead. My friends in my book club have been dropping by meals each evening for two evenings now. That really helps and is so lovely since we don't have any family who support us in the day to day. 

A note about positioning: Here you can see her on her side. Her body has to stay aligned (straight). She has the casts, wedge, and knee immobilizers on. We are using the cloth chuck underneath her to move her and it helps. Then using pillows and bolsters to help her stay positioned. We switch back and forth to the other side as well as sitting when ever she wants or at least ever two hours.  At night she can't seem to get comfortable regardless. We keep trying. Part of the it to state the obvious is that she just had her bones operated on and bones take a long, long time to heal. So it goes.

Careful positioning keeps Ellie aligned and comfortable.

I keep wondering if I wrap my head around this differently I might feel better about the lack of  sleep and the stress of it all. Maybe if I was just more chill?  One problem is that it's bad right now and a part of my brain goes to the place where it says - it's going to be this way forever.
When I go there I get instantly overwhelmed. And of course, it's not true. The one thing you can always count on -the one constant in life - is change. 

It's a challenge - this management of the self. It's a challenge not to think of how life could be different. 

I have been inspired lately by this guy who exemplifies what a zest for life means.  Watching him jump into life's challenges every day give me energy to "Do more and work harder" as Casey would say. And we do work hard but focusing those efforts on the right things at the right time is the key. Part of that work is keeping focused, positive, and present.

Hello Walkable Feet

Ellie asleep yesterday evening.

Ellie is resting now and we have a long road ahead of us. She has casts from the knee down to toes on both legs. Within those casts are feet at neutral and straight if not pointing out slightly (which is good because her tone pulls them in). She has flat feet! I don't mean that in the can't get into the army way and I can't see if she has a proper arch. But she no longer has feet twisted to the side that don't allow her to stand.  It's a wonder to see and a good thing as I have discussed in my last post.

She also has a foam wedge between her knees and knee immobilizers. It's going to be a very long recovery. Right now she has an epidural block in so she can't feel her hips and pelvis. This is a godsend.  I worry about the pain after that. There's a whole team devoted to her pain management and so far they have been doing great.

Ellie's a bit out of it and uncomfortable - but sleeping intermittently.  She needed a blood transfusion but since she got it her color is a lot better and when she is awake she has more energy.

So far so good.

Amazingly we got assigned a private room so it's quiet which suites Ellie very well as she is such a light sleeper. It's a small reprieve. And of course, it's raining. It rained the day Ellie was born - back in the days when it still rained in Los Angeles.  It rained when she had her brain bleed. It rained when she got ventriculitus when she was still in the NICU.

As we were driving in yesterday it rained too and Dave commented on it.

I love rain and am trying not to see it as a sinister thing. Maybe it's more of a symbol of healing for Ellie?  Maybe it's a way to soften the sharp edges around her?  Maybe it's just rain.

I totally see how superstitions start.

Despite the rain, Ellie survived these many surgeries within a surgery. We will be able to let her stand and in doing so let her organs stretch and breath and allow her body to build bone and muscle.  Because we went through this, ensuring that the pain is worth the gains that these interventions allow is critical.

Surgery Day

Ellie got the "Independence" Award at school!

It's a waiting game right now. Ellie is in surgery and will be for the next 9 hours. They got the PIC line in and the A-line and the epidural and the surgeon just made the main incision for her pelvic osteotomy. I asked my Facebook friends to send good thoughts, and whether you agree with our choice to do this or not, please send love and good thoughts to Ellie.

She has a long road ahead of her  but I believe it's one that leads to better quality of life than what she has now AND ensures that her body will be the healthiest possible so she can have a long life.

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Central Question

The big question that has been on my mind in preparing for this surgery is how to manage our energies as parents. I managed other big questions for Ellie like how to get her to gain weight so that she would have more reserves and she did gain 4 pounds! Go team Ellie!  Dave and I both managed all the other agonizing choices and decisions to make leading up to today.

In the past Dave and I have not been good about managing our own energies. Recently, in an episode of "Naked and Afraid" (disclaimer: yes this is a guilty pleasure, and yes, only in America, and no it is not porn) a pair of survivors were just at each other psychically the whole time - jealously weighing who was doing the most work, obsessing whether or not the other would come through with key needs and basically circling each other in the death grip of two drowning people. Finally one tapped out and the other - who was so dysfunctional in the presence of their partner - suddenly became very functional.

Some times Dave and I are like that - not that bad or course - but this dynamic exists in a subtle way - and we just exhaust ourselves in the process which is good for no one - especially Ellie.

The way I have seen us in this dynamic in the past is around how we manage Ellie's hospital time. Typically we both stay by her side for 12 hours and then one of us will stay with her in the hospital over night and the other will go home very late and come back very early then we both stay for 12 more hours and the other one will go home for the night but get back very early. In short, no one gets any rest and we burn out and get cranky and don't have as much brain power to make choices for Ellie because we are so tired.

Last year a friend had to do a similar surgery to what Ellie is going through today and her mom and dad handled the hospital time totally differently. In fact we went in one night and brought the dad some reading material and a beer. He was obviously strained because his child was in pain. But he was also in the flow of it and as such emitted a very calming energy. He was present for his daughter and somewhat rested. Mom was home with the other kids and visited every day but was rested too. After their hospital stay of a week Dad, who stayed at the hospital the whole time with his daughter, had to travel to another country for work and mom took over. And she had the reserves to do so because they had managed their energies so well.

Their easy sharing of the responsibility did not leave them as exhausted as they might have been had they practiced the joined at the hip way Dave and I have managed this in the past. It was still hard but as well managed as it could be.

This time Dave and I are taking longer shifts and giving the other a break in between to catch up on rest. One of us will still be by Ellie's side at all times. Don't get me wrong. We would never leave her in any hospital alone - ever. 

But Dave was up last night with Ellie who, understandably, did not sleep well. She never sleeps well but last night it was particularly bad. And then we were all up by 5am to get out the door to get to the hospital by 6am.  I was up in the middle of the night with her the night before.  The Gods of No Sleep have returned and been camping out with us for a solid 2 years after a year off. Damn them!

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Flying Hearts

Once Ellie was in surgery we waited for the first update and then I sent Dave home to go to sleep. He is taking the first night tonight and as we were awaiting the first update he looked exhausted. I'm glad he's gone home to rest.

When something like this happens, a child is ill or injured or maintains a life long disability, 95% of couples split. I can see why because for us anyway, Ellie became our central concern.  We have to remember to also take care of each other - and in the past we have not been good at that and we were younger and had more energy.

Dave will come back toward the end of the time of her surgery late this afternoon and then, once they are settled in a room and if Ellie is ok, I'll go home and come back mid-day tomorrow and stay for two days while he goes home and rests. He will visit of course but only for a couple of hours versus 12 hours. In the mean time I hope he sleeps in, rides his bike, and rests and rest and relaxes and eats well and hydrates. And then he will take the next two day stint I will try to do the same.

When Ellie gets home we are not going to have help caring for her 24/7. I anticipate some very long nights. We will be vigilantly trying to keep ahead of her pain. All her care will be that much more difficult because of her pain, casts, knee immobilizers and wedge. It will be harder to feed her. And this will go on for weeks and we will be balancing this with full time jobs. 

If we exhaust ourselves here - while we have help - we will be all the more tired when she gets home. I want to avoid that.

In truth - maybe the central question really is - how do we survive this experience of raising Ellie and care for each other too?  Maybe in trying to do both we will find not only more grace but more joie de vivre?

Orthopedic Summer

Hi Everyone,

Thank you to those of you who have written to thank me for sharing our story and to say that in that sharing you found some hidden strength and hope. Hope is a powerful thing after all and it is what keeps me going through the darkest times. It motivates me to action.

Ellie having a foot soak.

When Ellie was born they told us she may not make it through the next few hours, then the night, then the week. After she survived for two months they told us that we should sign a DNR because she had diffuse PVL and that she would be severely impaired.  Horrifying to be sure that they would suggest doing a DNR on a kid who needed suctioning so she would not drown on her own secretions. After that we were afraid to leave the NICU at all in fear that they wouldn't work hard enough to save her. 

However, the NICU nurses never gave us that impression that Ellie wasn't worth saving - just the opposite. It was specifically two doctors who did the test for PVL that frightened us so much we just decided to always have one of us on watch. We were already putting in very long days there but after that we would only leave once in a while when a particularly trusted nurse was on. But if there was a respiratory therapist we didn't trust we would stay all night and all day.  That was our life for 134 days. I don't know if it was necessary but the protective instincts we had as new parents were very strong and are still in high gear today. I don't think we will ever get over how intensely protective we feel toward Ellie. I am sure it's the same with any parent. 

During Ellie's infancy and toddlerhood I was also afraid of what our future would be.  What if Ellie were severely impaired? What would that look like? Would I be able to handle it?

These were big questions. And they were on the table for a really, really long time. When she was so little it was hard to know if she would keep progressing or would she stay in the baby stage forever, for example. They told us that we had to make huge progress with her before she was 5 because her development would taper off. And it is true that there is rapid brain development from infancy through toddlerhood. But the brain is constantly re-arranging and adapting based on the needs of its environment. This is why it's so important to bring the world to your kid if they can't access it themselves. Stimulate your child is what we heard and we did as you can see a little bit of by reading here. And it really did help. 

However, in some ways I think that Ellie's foot and leg issues were determined from the moment her brain was injured. In fact her PT/OT in the NICU called it - she said Ellie's feet would always be her hardest problem. And so they are.  But just the same all the work we did Ellie and all the work they do with her now in school helps - it keeps Ellie's brain developing and her life unfolding. Is she at a different  pace than other twelve year olds? Yes - totally.  And that is a bummer in many ways. Don't get me wrong - I wish this had never happened to her or us. It is not glamorous and it's a lot of hard work all the time with lots of constraints I never expected to face.  However, the grass could look greener from anyone's perspective. But she is doing great considering what she has lived through and the challenges she was presented with from her early birth  - yes - fantastic and thank God. It could be worse and I am thankful every day that I get to have her in my life. That is one thing I don't take for granted - ever. 

Now that she is twelve we are facing caring for her has her high tone pulls her legs and feet into knots as her bones grow.

That is why this summer on June 26th Ellie is having a pelvic osteotomy, hip osteotomies, Achilles tendon lengthenings, ham string lengthenings and the bones rearranged along with the muscles in her feet to treat her now clubbed feet. 

The surgery is meant to take roughly 9 hours and she will then be in a hip to toe cast for 3 or more weeks. It will be a long recovery after that with loads of physical therapy needed. 

Ellie Belly checking out the fish at age 4

The consequences of not doing this is that she won't be able to stand much so that her organs will get scrunched which is life threatening. And her hips will start to come out of their sockets regularly - which is hugely painful. 

Once again, as with all of medicine, we are making a choice between two evils. We make the most informed choice we can and move on.  And to answer the unspoken question - yes she wears AFO's every day and her feet still became clubbed. Yes we have tried Botox many times and the last time to no effect.  

With this big surgery ahead of us once again I have to rely on hope - hope that I am making the right choice. Even though we have spoken to four doctors about this and have seen the obvious issues on her x-rays - I still have to hope that we are doing the right thing because you don't know sometimes until you do. 

There is that expression: Have faith in God but tie up your camel.  

It's exactly like that - I have hope but do my homework and work my butt off to ensure a good outcome. Hope alone isn't enough. So send a prayer along for Ellie on June 26th and the weeks following. There are studies that show when people are prayed for they do better. This is a rough thing Ellie has to face once again. I wish she didn't.